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The lived experience of mothers as they sought health care for their internationally adopted children

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THE LIVED EXPERIENCE OF MOTHERS AS THEY SOUGHT HEALTH CARE
FOR THEIR INTERNATIONALLY ADOPTED CHILDREN
by
Natalie L. Murphy
A Dissertation Submitted to the Faculty of
The Christine E. Lynn College of Nursing
in Partial Fulfillment of the Requirements for the Degree of
Doctor of Philosophy
Florida Atlantic University
Boca Raton, FL
December 2010
UMI Number: 3438346
All rights reserved
INFORMATION TO ALL USERS
The quality of this reproduction is dependent upon the quality of the copy submitted.
In the unlikely event that the author did not send a complete manuscript
and there are missing pages, these will be noted. Also, if material had to be removed,
a note will indicate the deletion.
UMI 3438346
Copyright 2011 by ProQuest LLC.
All rights reserved. This edition of the work is protected against
unauthorized copying under Title 17, United States Code.
ProQuest LLC
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© Copyright by Natalie L. Murphy 2010
ii
ACKNOWLEDGEMENTS
Thank you, Robert Russell Murphy, my husband of 20 years, for your love,
dedication, and support. It was your belief in me that carried me through this process.
Thank you to my children, Nicole, Layne, and Treyson, for your unconditional
love. I am so very proud of each of you.
Thank you to my parents, Herbert and Carolyn Wessner, for teaching me to
follow my dreams and for providing me with the opportunities to do so early in my life.
Thank you to Robert and Mary Murphy, my parents-in-law, for your
unconditional support through this process.
Thank you, Dr. Deborah Raines, my dissertation chair, my mentor and my
guide. Along the way you also became my dear friend. Words cannot express my
gratitude.
Thank you, Dr. Susan Folden, Dr. Josie Weiss, and Dr. Edward Pratt, my
committee members, for your guidance and thoughtful feedback.
Thank you to Dr. Rose Sherman, for encouraging me to chase my dreams. It was
you who led me to The Christine E. Lynn College of Nursing in the first place.
Thank you, Dr. Laureen Fleck, for being first my mentor and then for becoming
my friend. I would not have gotten through this process without you.
iv
Thanks also to the entire esteemed faculty at The Christine E. Lynn College of
Nursing for guiding on my doctoral journey.
Thanks also to all of my many co-students who have shared in this journey. It
would have been lonely without you!
Finally, I thank my research participants, for bravely sharing their stories.
Thank you for trusting me.
v
ABSTRACT
Author:
Natalie L. Murphy
Title:
The Lived Experience of Mothers as They Sought Health Care
for Their Internationally Adopted Children
Institution:
Florida Atlantic University
Dissertation Advisor: Dr. Deborah Raines
Degree:
Doctor of Philosophy
Year:
2010
For the past 60 years, American citizens have turned to international adoption
as a way to build their families. Unfortunately, international adoptees often spend the
first months or years of their young lives in conditions of poverty and/or
institutionalized care. Additionally, current U.S. immigration laws dictate that the
children receive only a cursory health screening before arrival. As a result, many of the
children adopted by Americans arrive to the United States with significant physical,
emotional, behavioral, and developmental health problems.
Twelve mothers who had adopted children internationally were interviewed for
this study. Their stories of obtaining health care for their newly adopted children were
shared in descriptive narratives. The themes that emerged from the data analysis were
seeing healthy children despite the challenges, struggling to help the children, needing
help, missing lost pieces, being different, and wanting more from providers. The overall
vi
essence derived from the mothers’ experiences was that seeking health care for their
newly adopted children was one of hope to achieve wellness for their children and
normalcy for their families within the context of loss and a desire for more support.
These findings have significant implications for the health care providers who care for
them.
vii
DEDICATION
To
Treyson Josef Murphy
The little man with the big brown eyes who taught me that love really can heal the
deepest of wounds.
I love you with all my heart.
THE LIVED EXPERIENCE OF MOTHERS AS THEY SOUGHT HEALTH CARE
FOR THEIR INTERNATIONALLY ADOPTED CHILDREN
List of Tables .......................................................................................................... xii
Chapter 1 .................................................................................................................. 1
Introduction......................................................................................................... 1
Historical Review of International Adoption in the United States ........................ 2
A Pilot Study......................................................................................................14
Caring for a Sick Stranger ............................................................................15
The Nightmare Transition.............................................................................15
Lack of Knowledge ......................................................................................16
Perceptions of Discrimination.......................................................................17
Purpose of Research ...........................................................................................17
Significance of Research ....................................................................................18
Research Question..............................................................................................18
Definition of Terms............................................................................................18
Chapter Summary...............................................................................................19
Chapter 2 .................................................................................................................21
Review of Literature...........................................................................................21
International Adoptive Parents and the Adoption Process ...................................21
General Background on Internationally Adopted Children..................................24
viii
Current Screening Process to Obtain U.S. Visa...................................................24
Physical Problems of Internationally Adopted Children......................................26
Common Infectious Diseases and Suggested Treatment in International
Adoptees ......................................................................................................26
Tuberculosis (TB)...................................................................................26
Human Immunodeficiency Virus (HIV)..................................................26
Hepatitis B Virus (HBV).........................................................................27
Parasites .................................................................................................28
Helicobacter pylori (H. pylori) ...............................................................29
Global Spreading of Infectious Disease Via International Adoption..............29
Immunizations in Internationally Adopted Children......................................31
Other Physical Challenges ............................................................................32
Consequences of the Physical Problems on Adoptive Families .....................32
Behavioral and Mental Health Needs of Internationally Adopted Children .........34
Developmental Health Needs of Internationally Adopted Children.....................36
International Adoption Medicine ........................................................................37
International Adoptive Families and General Health Care Providers...................39
Chapter Summary...............................................................................................42
Chapter 3 .................................................................................................................43
Methodology......................................................................................................43
Design ..........................................................................................................43
Data Sources ......................................................................................................44
Procedures for Data Generation..........................................................................45
Data Analysis .....................................................................................................48
ix
Rigor..................................................................................................................49
Chapter 4 .................................................................................................................51
Results ...............................................................................................................51
Introduction..................................................................................................51
Demographics ....................................................................................................51
Procedures..........................................................................................................52
The Interviews ...................................................................................................53
Connie..........................................................................................................53
Louise ..........................................................................................................58
Beth..............................................................................................................61
Monica .........................................................................................................64
Carol ............................................................................................................68
Sandra ..........................................................................................................71
Betsy ............................................................................................................74
Sharon..........................................................................................................77
Joyce ............................................................................................................80
Terri .............................................................................................................83
Sonia ............................................................................................................86
Danielle........................................................................................................90
Data Analysis .....................................................................................................96
Themes ............................................................................................................104
Seeing Healthy Children Despite the Challenges ........................................104
Struggling to Help the Children ...................................................................106
x
Needing Help..............................................................................................109
Missing Lost Pieces....................................................................................111
Being Different ...........................................................................................112
Wanting More from Providers ....................................................................113
The Essence .....................................................................................................114
Criteria for Rigor ..............................................................................................118
Chapter Summary ............................................................................................119
Chapter 5 ...............................................................................................................121
Discussion, Implications, and Recommendations..............................................121
Introduction................................................................................................121
Discussion of Philosophy, Theory, and Findings..............................................121
Implications for Practice...................................................................................124
Seeing Healthy Children Despite the Challenges ........................................124
Struggling to Help the Children and Needing Help.......................................126
Missing Lost Pieces....................................................................................133
Being Different and Wanting More from Providers .....................................135
Implications for Policy .....................................................................................139
Limitations and Implications for Future Research.............................................140
Conclusion .......................................................................................................141
Appendixes............................................................................................................143
References..............................................................................................................147
xi
LIST OF TABLES
Table 1. Themes Extracted from Participant Interviews.........................................101
xii
CHAPTER 1
Introduction
In the past decade, U.S. citizens have adopted more than 200,000 children
internationally (U.S. Department of State, 2009b). Since the United States was built
through immigration from multiple nations, the mixing and blending of various cultures
are the norm. This may be the key reason Americans feel comfortable with creating
diverse families through international adoption (Pertman, 2000). International adoption
began as an altruistic, philanthropic response to the plight of the World War II orphans
in the late 1940s. Over the past 60 years, international adoption proliferated because of
the social, political, and economic context of the nations involved (Lovelock, 2000).
The United States is both a ‘sending’ and a ‘receiving’ country. A little known fact is
that young black American mothers adopt ‘out’ their newborns to other countries,
primarily Canada, because the mothers view these countries to be less racially divided
(Engel, Phillips, & Dellacava, 2007). Understanding the history of international
adoption provides insight into the present problems of this process and how these
problems impact the current health of the children and families involved. With greater
understanding of this background and knowledge of the existing needs of international
adoptive families, health care providers will be better prepared to offer the support and
guidance needed to assist newly-formed adoptive families provide the necessary
environment for physical health.
1
Historical Review of International Adoption in the United States
In the 1940s, domestic adoption was a difficult process controlled by social
workers who created families through a policy called ‘matching.’ Prospective parents
underwent a highly invasive screening and, if deemed ‘good enough,’ were matched
with an infant or child who looked like them. Social workers attempted to create
‘natural’ looking families, families of young, married couples with children who at least
appeared as if they could have been born to these couples. Older couples were
encouraged to adopt older children or children with physical or mental disabilities.
However, there were never enough babies available to meet the demand of prospective
adoptive parents (Berebitsky, 2000).
After the devastation of World War II, the losing nations of Germany, Japan,
Italy, and Greece were unable to provide care for the many children who became
orphans as a result of the war. The physical and financial destruction of these countries
set the stage for wealthier nations, such as the United States, to begin adopting these
children. As a result, wealthy American families independently began to search these
countries, especially Italy and Greece, for adoptable children (Benet, 1976). At the time,
there were no laws or policies available to facilitate such independent international
adoptions. In response, President Truman created a way into the U.S. by issuing a
directive in 1945, which allowed the immigration of these children to the United States
in 1945. Thirteen hundred European and Japanese children migrated under this directive
(Lovelock, 2000). In 1948, the Displaced Persons Act was passed, allowing American
families to adopt an additional 3,000 refugee children (Engel, Phillips, & Dellacava,
2007).
2
One year later, Pearl S. Buck, a Pulitzer and Nobel Prize-winning author, was
the first American to form an international adoption agency that facilitated adoptions.
The agency, which started in Pennsylvania and originally was named the Welcome
House, now is called Pearl S. Buck International. Buck, who had lived abroad most of
her life, was an adoptive mother of four mixed-race, foreign-born children. Since Buck
was a staunch critic of the practice of racial ‘matching’ routinely practiced in domestic
adoptions, she actively supported the international adoption movement (The Adoption
History Project, 2007a). Prospective American adoptive families finally had another
possible avenue to parenthood.
In 1953, Americans continued the philanthropic activity of international
adoption. This time most of the adoptable children were ‘GI babies’ sired by American
soldiers with young Korean mothers during the Korean War. These mixed-race children
were scorned publicly in their birth country (Oh, 2005). An important note is that
international adoptions in the 1950s continued to occur under conditions of post-war
poverty in conquered nations and were minimally regulated. In addition, cultural beliefs
of the nations involved influenced the process. Korean cultural beliefs of the need for
‘racial purity’ contributed to the mass American adoptions of ‘GI babies.’ Mixed-race
babies were rejected outright by Koreans as unacceptable (many were simply left to die
after birth) and the American media portrayed adoption by Americans as the only way
to save these children. Americans, guided by their own cultural beliefs, felt adoption of
these half-American children was a national duty (Oh, 2005). One consequence of
adopting these mixed-race children was that the adoptions directly contrasted the child
3
matching policies supported by the domestic child placing practices (Berebitsky, 2000).
What defined ‘family’ in the United States began to change.
Christian religious groups primarily drove the movement to adopt these
children. Most notable were Harry and Bertha Holt, a Christian American couple who
adopted eight ‘GI babies’ and started the Holt International Adoption Agency. The
Holts believed that the current domestic adoption practices were restrictive and urged
others to adopt war orphans to fulfill Christian duty. By 1961, the Holts were
responsible for placing 2,587 Korean orphans in American homes (The Adoption
History Project, 2007b). The Holts challenged the domestic practice of scrutinizing
prospective adoptive parents and professed that faith was the only necessary criterion
needed for individuals to be parents. The Holts completed adoptions by proxy and the
adoptions basically were unregulated (Engel, Phillips, & Dellacava, 2007).
Many of the Korean children as well as war orphans adopted from Japan and
Eastern Bloc countries were granted visas through the Refugee Act of 1953. Two years
later when this act expired, prospective American adoptive parents called upon the U.S.
government to continue intercountry adoptions. This move designated an important
shift in the underlying purpose of international adoption by Americans; what began as
“finding families for children” became “finding children for families” (Lovelock, 2000,
p. 908). In 1959, Congress shifted the responsibility for granting visas to orphans from
the Department of State to the Department of Justice’s Immigration and Naturalization
Service (INS). Although this was a governmental attempt to begin regulating
international adoptions, the function of the INS was to support immigration law, not to
investigate the health and safety of the children involved (Lovelock, 2000).
4
In 1961, the Immigration and Nationality Act was passed, which led to
permanent laws granting prospective American adoptive parents permission to adopt
internationally. In 1963, the INS initiated the current I-600 program that is responsible
for the immigration services of internationally adopted children. Through this program,
American parents and ‘adoptable’ children must meet certain criteria to gain permission
to adopt and to obtain a U.S. entry visa. Interestingly, as the INS established this
service, a group of child advocates in Europe met in an attempt to form
recommendations and guidelines for international adoption. These recommendations led
to a published report called the Leysin Principles, which stressed that the needs of the
adopted child, not the needs of the parents, should be the focus of adoption, and
suggested that international adoption should be a last resort option for children. The
United States, however, did not endorse the Leysin Principles initially (Lovelock,
2000).
Significant social and political changes occurred in the 1970s, which greatly
impacted adoption processes both domestically and internationally. In 1973, first
trimester abortions became legal in the United States. Premarital sex, singlemotherhood, birth control, and divorce became socially acceptable, prompting fewer
women to place their infants up for adoption. Adult adoptees became vocal about the
detriments of ‘closed’ adoption records (legally sealed records that required adopted
children to obtain a court order to acquire any information on their birth parents), and
the movement towards ‘open adoption’ began. In ‘open adoption,’ birthmothers were
free to choose adoptive parents for their child and, in some cases, they continued to
have contact with their child after placement with the adoptive family (Berebitsky,
5
2000). Infertility rates and ‘late’ marriage rates also began to rise during this period.
Also, the National Association of Black Social Workers issued a policy statement in
1972 vehemently opposing transracial adoptions, which resulted in an almost complete
cessation of the practice of available domestic black children being placed in white
adoptive homes (The Adoption History Project, 2007c). As a result of these factors,
American couples increasingly looked abroad for adoptable children as the domestic
baby shortage intensified (Alstein & Simon, 1991).
During 1975, the United States government began Operation Babylift in
Vietnam, in which the U.S. military airlifted Vietnamese children displaced by the war
and brought them to the United States to be placed in American homes. Most of the
children, however, were not orphans, but simply displaced children separated from birth
families by the war. This highly controversial removal of nearly 2,000 children from
Vietnam, which completely disregarded international adoption procedures, displayed a
shocking truth: the movement of these children was motivated not by child welfare but
by the domestic and political needs of nations. What was even more horrifying was that
during the ‘rescue,’ one of the helicopters crashed and 100 children and 25 adults
perished. During this time, there was an established program to adopt available
Vietnamese children (Lovelock, 2000), but the rights of the children and the Leysin
Principles again were disregarded completely (Lovelock, 2000). The media coverage of
the event prompted the Vietnamese government to slow their adoption program, and by
1980, very few children were adopted internationally from Vietnam (Alstein & Simon,
1991).
6
Notwithstanding the Operation Babylift occurrence, the numbers of
internationally adopted children continued to grow during the next two decades. The
United States continued to consider international adoption a ‘private’ matter between
adoptive parents and the sending country. Despite the United Nations holding two
international conventions concerning the rights, protection, and safety of children being
adopted internationally, neither legislative changes nor any form of federal regulation of
the process materialized in the United States. Methods for obtaining children by
independent parents and adoptive agencies simply were overlooked (Lovelock, 2000).
The 1990s were a time of great change for adoptions. Shifting socio-political
factors worldwide created new sending countries. For example, China created its ‘one
child policy’ and became a huge source of adoptable children (Miller, 2005).
Additionally, the fall of the Iron Curtain resulted in the eastern European region
becoming a significant sending area for the first time (Lovelock, 2000). The domestic
adoption process was altered forever by the media frenzy surrounding the Baby Jessica
case, thereby having a tremendous effect on international adoptions. Around the same
time, stories of child trafficking tainted international adoptions (Collinson, 2007). All of
these events impacted the practice of international adoptions and led to the beginnings
of reform.
The government of China created their “one child” policy in an attempt to
control their booming population rates. The policy mandated that couples could have
(and keep) only one child. Since there is no public program in China to support the
elderly and Chinese culture dictates that male children are responsible for their aging
parents, young parents overwhelmingly chose to keep male children and abandon
7
female children. Millions of abandoned baby girls soon filled government orphanages
and became available for adoption to other countries (Miller, 2005).
In 1993, prospective adoptive parents were faced with another disconcerting
reality in domestic adoptions. The Michigan Superior Court shocked the nation with its
decision to return a 2-year-old child to her biological parents after spending two years in
her adoptive home. Shortly after birth, Baby Jessica (as she was known) had been
placed with her adoptive parents, Jan and Roberta DeBoer. The birthmother, Cara
Clausen, initially placed the child without informing the biological father of the child’s
existence. A few months after the placement, Cara told Baby Jessica’s biological father,
Dan Schmidt, about the child. Schmidt then began legal proceedings to gain custody of
his biological daughter. The DeBoer’s never had finalized their adoption legally and the
Superior Court ruled in favor of the biological family (Collinson, 2007).
The Baby Jessica court decision had profound implications for domestic
adoptions as well as international adoptions. Many prospective adoptive parents began
to worry that domestic placements simply were too risky. These couples were
concerned that biological parents could and would return to reclaim their child years
after an adoption. As a direct result of this fear, more parents began to consider
international adoption as a safer route to parenthood than domestic adoption. They
believed that birthparents of foreign-born children were unlikely to attempt to reclaim a
relinquished child (Collinson, 2007). Not surprisingly, international adoption rates in
the 1990s soared. However, Americans adopting abroad soon discovered that this was
not a risk free activity at all. Indeed, some of the adoptions were tainted by immoral and
unethical problems. Romanian adoptions were one example of the latter.
8
In 1989, Nicolae Cearseau, the President and dictator of Romania, was executed
after a national uprising (Lovelock, 2000). Following his death, media coverage
revealed the deplorable conditions of poverty found in the country and the devastating
effects of his government policies. Hundreds of thousands of orphaned children roamed
the streets or were housed in horrendous conditions in state-run orphanages. The
worldwide response to help these children was enormous and unprecedented.
Prospective adoptive parents from all over the globe poured into Romania to find a
child (Pertman, 2000). Many countries, including the United States, ‘fast-tracked’ the
visa process to get help to the children quickly (Lovelock, 2000).
When it became clear that many of the orphanage children were infected with
HIV and Hepatitis B, a Romanian black market for children formed. Baby brokers
found abandoned children in local villages or bought them from poor families and sold
them to adoptive couples. Unfortunately, because of their significant early neglect, the
infants and children (many under the age of 6 months) adopted from Romania had
“persistent developmental delays, frequent sensory dysfunction, and ongoing emotional
and behavioral problems” (Miller, 2005, p. 58). Today a moratorium exists on foreign
adoptions in Romania, while the Romanian government tries to institute much needed
reforms in the process (Miller, 2005).
Guatemala became the next site for controversial media attention. As the
Guatemalan civil war, a war that resulted in nearly 40 years of bloodshed and
persecution of the indigenous Maya, came to an end in 1996, the government grappled
with regaining control. Thousands of displaced citizens wandered the country, many of
whom were children and pregnant women. Again, in response to the aftermath of war,
9
international adoptions began in an attempt to place the children of the refugees
(Collinson, 2007).
Horrible stories about baby stealing by Americans spread like wildfire across the
country. Many of the stories suggested that Guatemalan children were being stolen and
killed so that American children waiting on transplant lists could use their organs. Some
believe that these unfounded stories were initiated by the military of the previous
regime in an attempt to undermine the new government. Guatemalans literally attacked
American tourists on the street. Guatemalan villagers stabbed one reporter simply for
taking a photograph of a village child (Collinson, 2007).
The U.S. government responded by issuing travel advisories in 1994 and
instituting deoxyribonucleic acid (DNA) testing as a requirement for obtaining a visa
(Collinson, 2007; Miller, 2005). The birthmother and relinquished child both are tested
by the U.S. embassy to prove that the child is not stolen and is being placed legally. The
adoptive parents pay for the testing. The DNA testing is carried out at the beginning of
the adoption process when the birthmother places her child in foster care with an
attorney, and testing is repeated after the adoption is finalized in Guatemala and before
a visa is issued. Of course, DNA testing cannot prevent a mother from selling her child
to a lawyer who brokers children.
As adoption became increasingly globalized and numerous ethical dilemmas
surfaced, the media, child advocates, and adoptive parents called for increased
regulation of the process (Lovelock, 2000). On May 29, 1993, the Hague Convention
on the Protection of Children and Co-Operation in Respect of Intercountry Adoption
was created. This was the first document that publicly identified international adoption
10
as an acceptable practice used to permanently place children in adoptive homes outside
their country of birth (Hague Conference, 2008). The document had three objectives:
establish safeguards to promote the rights of the child, establish a system between
countries that would eliminate the trafficking of children, and ensure that all adoptions
take place in accordance with the convention. Participating countries would need to
establish a ‘central authority’ to oversee the adoptions. Basically, the Hague Convention
called for a cessation of all independent adoptions and dictated that countries assign a
“central authority” to oversee the adoption process. The United States signed the initial
document on March 31, 1994; however the document was not ratified until 2007 when
President George Bush finally signed it (Topics in Brief, 2007). The “central authority”
position for the United States then was assigned to the Department of State (Brown,
2009).
While the Hague Convention was developed to protect children, the short term
results of this international treaty have lengthened the adoption process greatly. One
stipulation of the treaty was that adoption agencies had to be accredited. In the United
States, accreditation occurs by one of two agencies backed by the U.S. Department of
State. To meet accreditation regulations, U.S. adoption agencies had to hire a Master’s
prepared clinical supervisor for social workers, increase the adoption training of current
social workers, provide a minimum of ten hours of training to prospective adoptive
parents, and begin carrying a $1 million per aggregate liability policy (Bailey, 2009).
This greatly raised the overhead cost of adoptions for agencies. These requirements
most likely will force smaller adoption agencies (who may be ethical agencies) out of
business and this overall cost may be passed onto the prospective parents (Bailey,
11
2009). The paperwork for prospective parents is expected to increase as well.
Governments all over the world are attempting to comply with the components of the
Hague Convention. Some, like Guatemala, have been unable to set in place all the
necessary legal obligations; as a result, their adoption programs have “closed” (Brown,
2009). The “very policy intended to protect families and children, may in practice,
ultimately cause more harm” (Bailey, 2009, p. 181). For waiting children, this policy
already has translated into greater waits under dismal circumstances and for many, no
adoption at all. In 2009, the number of adoptions by U.S. citizens dropped to 12,753,
the lowest number in more than a decade and nearly a 50% drop since 2004 (U.S.
Department of State, 2009).
Besides the greater wait times for children and families, one of the greatest
criticisms of the Hague Convention is that it inadvertently may contribute to child
trafficking. While many countries are signed members of this treaty, there are many
that are not. The rules of the Hague Convention apply only to Hague-agreement
countries. U.S. adoption agencies that wish to process adoptions from countries who
have not ratified the treaty may do so and do not have to meet accreditation
requirements. A key point is that Russia, Kazakhstan, Haiti, and other poverty stricken
nations are not members of the Hague Convention (HCCH, 2010). In 2009, 7,213 of the
12,753 children adopted by Americans came from non-Hague nations (U.S. Department
of State, 2009). In effect, it is easier and quicker to adopt from nations who have not
signed the treaty since these adoptions are not well regulated. Although this does not
necessarily mean the adoptions are unethical, they are not occurring through accredited
adoption agencies or in accordance with the Hague Convention (Brown, 2009). These
12
adopted children are arriving from poor nations under unregulated conditions. It follows
that children adopted under these circumstances may be more likely to have
undiagnosed and untreated health problems.
Another reality is that the U.S. government does not comply with its own
adoption laws. A good example is the recent earthquake in Haiti, which left hundreds of
children possibly orphaned. In response to the disaster, the U.S. government
“pressured” Haitian authorities to release 54 orphaned children to the United States.
While 47 of these children had waiting adoptive families in the United States who had
completed all legal paperwork on their adoptions (but whose adoptions had not been
finalized in Haiti), 7 of the children had no waiting parents (Jonsson, 2010). In essence,
the flight of these children from Haiti to the United States was not unlike the earlier,
highly criticized Vietnam Babylift. In reality, this action was not illegal because Haiti is
not part of the Hague Convention; however, it was unethical. While the evacuation of
the children did result in their immediate physical safety, their current and future mental
and developmental health was disregarded. Removing a child from all that they know
during a crisis event will have emotional consequences. For the seven children who
were moved without proper documentation, it is quite possible that those children still
have biological relatives in Haiti who are alive and willing to care for them. This recent
event highlights the ongoing ethical and legal dilemmas occurring in international
adoption.
Since the inception of international adoption, more than one-half million
children have migrated to the United States from more than 100 countries through the
adoption process (U.S. Department of State, 2009). The reality of international adoption
13
is that wealthier countries generally adopt the children of poorer ones. Poverty, war,
famine, and political upheaval create conditions under which less fortunate countries
‘place out’ their children. International adoption law in this country was created to give
American families a new way to build their families. The laws created were focused on
immigration: how to allow the child to move to a new country legally. Because the laws
were created and managed by an agency of the government that oversees immigration
and not child welfare, there is limited focus on the health of the children involved. By
understanding the history and challenges of international adoption, it comes as no
surprise that these underprivileged children often arrive at their new adoptive homes
with a host of physical, mental, behavioral, and developmental problems (Miller, 2005).
How is our current health care system caring for these children and their new families?
The purpose of this study is to examine the experiences of adoptive mothers as they
obtain health care in the U.S. for their newly internationally adopted children.
A Pilot Study
Although the numbers of international adoptees exceed one-half million in the
United States alone, there has been no research to determine if these adoptees have been
screened sufficiently by health care providers according to suggested guidelines (Welsh,
Viana, Petrill, & Mathias, 2007e, 2007). In 2008, Murphy (2009a) conducted a pilot
study to evaluate the experiences of mothers who sought health care for their newly
internationally adopted children. Four mothers who adopted a total of five infants
internationally were involved in the phenomenological pilot study. Mothers simply
were asked to “tell their story of obtaining health care for their internationally adopted
child” (Murphy, 2009a, p. 5). Analysis of the data collected revealed that the adoptive
14
mothers experienced numerous barriers in caring for their newly adopted children’s
health. Four themes were discovered: ‘caring for a sick stranger,’ ‘the nightmare
transition,’ ‘lack of knowledge (by health care providers),’ and ‘perceptions of
discrimination (from health care providers)’ (Murphy, 2009a). These themes are
described in brief below.
Caring for a Sick Stranger
Mothers in the pilot study remarked that all of their children arrived with acute
illnesses at their new adoptive homes. The adoptive mothers described how difficult it
was to adjust to having a new member of the family and how illness complicated this
process. Each of the mothers lamented how difficult it was to try to care for a sick child,
especially a sick child who essentially was a stranger. This quote by one of the
participants highlights this frustration:
We being new, ignorant parents did not recognize that the colds had turned into
ear infections. We dealt with ear infections for 10 days before we knew what we
were dealing with. It was so hard to figure out that they were sick because we
didn’t know what their normal was, does that make sense? We didn’t know their
baseline. (Murphy, 2009a, p. 8)
The Nightmare Transition
The title of the second theme was derived from one mother’s statement: “The
first four weeks home were a nightmare…a nightmare that I wasn’t prepared for”
(Murphy, 2009a, p.9). This theme evolved from the mothers’ description of how
difficult the initial transition period at home proved to be. The mothers expressed that
15
initially their children’s behavior was difficult and stressful and that they struggled to
meet their new children’s behavioral and mental health needs.
Lack of Knowledge
The third theme identified was lack of knowledge. This lack of knowledge was
twofold: adoptive mothers lacked general knowledge on their new children’s medical
histories, while health care providers lacked knowledge on how to care for international
adoptees and their new families. Mothers articulated frustration about adoption agencies
and foreign countries not providing medical histories. The mothers also expressed
disappointment with the health care providers’ lack of knowledge about internationally
adopted children and their specific health care needs. This was expressed in comments
such as:
•
“I simply don’t know my daughter’s medical history” (Murphy, 2009a,
p.11).
•
“All of their information was downloaded on us (by the Guatemalan foster
parents) in twenty minutes in Spanish” (Murphy, 2009a, p. 9).
•
“My pediatrician doesn’t seem to offer much support because she simply
doesn’t have too many internationally adopted kids in her practice”
(Murphy, 2009a, p.12).
•
“Dr. S. was really honest about her lack of experience with internationally
adopted kids. It was hard. I can’t blame Dr. S. for not solving our problems.
She was very sweet, very sympathetic, but not helpful” (Murphy, 2009a, p.
10).
16
Perceptions of Discrimination
The final theme identified in the pilot study was labeled as perceptions of
discrimination. The adoptive mothers described health care providers who were
insensitive to their needs, which led the mothers to feel they were being discriminated
against. As a result, one mother withheld important medical information from her
provider and another expressed anger about being denied information routinely given to
biological parents. The quote below revealed these findings:
I asked to know my daughter’s blood type. You know if you give birth to a baby
they tell you. But the blood they were drawing wasn’t for that and they said that
you’d formally have to request it and insurance might not cover it. (Murphy,
2009a, p. 11)
These provocative, preliminary findings revealed the need for further evaluation.
Understanding the actual experiences of international adoptive parents as they navigate
the current health care system can assist healthcare providers with changing the system
to meet international adoptive family needs appropriately. As such, further research was
necessary.
Purpose of Research
The purpose of this study was to continue to build upon the pilot study discussed
above and to gain a better understanding of the lived experiences of adoptive mothers as
they sought health care for their newly internationally adopted children. This study
focused on the experiences of mothers who obtain health care for their internationally
adopted children after returning to the United States. The lived experience of adoptive
mothers as they sought care for their newly internationally adopted children is described
17
and the underlying meaning of this experience for the mothers is revealed. The goal of
this research was to generate knowledge for health care providers regarding the needs of
international adoptive families.
Significance of Research
As mentioned earlier, there has been no specific research to assess if
internationally adopted children have been screened properly and thoroughly for
physical, behavioral, developmental, and emotional problems according to suggested
guidelines (Welsh et al., 2007). While there is significant medical literature regarding
infectious disease incidence among international adoptees, there is a dearth of research
on the experiences of international adoptive families as they seek preventative and
illness related healthcare for their new child. A goal of this research was to obtain a
deeper understanding of actual adoptive family experiences with the U.S. health care
system. This knowledge can be used to enhance health care practices and subsequently,
improve health outcomes of internationally adopted children and their families.
Research Question
What is the lived experience of adoptive mothers as they seek healthcare for their newly
internationally adopted children?
Definition of Terms
Lived Experience: A phenomenological term that describes the underlying nature or
meaning of the everyday life experiences humans encounter (Van Manen, 1990).
Healthcare: Healthcare is the physical, behavioral, developmental, and/or emotional
care that children receive from licensed health care providers in the United States after
adoption.
18
International Adoptive Mothers: The mothers in this study are U.S. citizens who legally
have adopted children from third world nations.
Newly Adopted: This refers to the time shortly after adoption. Mothers will be
questioned about the health care experiences that occurred during their child’s first year
in the United States.
Internationally Adopted Children: These are children who have immigrated legally to
the United States from other countries through the process of international adoption.
Chapter Summary
Child adoption is a practice that has existed since ancient times. The process of
international adoption in the United States has a long, difficult history. As stated earlier,
international adoption often occurs between countries with great differences in
economic circumstances. Unfortunately, the financial disparity between receiving and
sending countries sets the stage for numerous ethical dilemmas (Lovelock, 2000).
International adoption is at once a success and a failure; children from poor countries
are placed in the loving homes of wealthy nations with a chance to lead productive,
fruitful lives and yet these same children are denied the opportunity to remain in their
countries of birth, loved by families judged too poor to care for them. In reality,
international adoption is a process mediated by discrepancies in social class, gender,
and race. These discrepancies contribute to the physical, behavioral, developmental, and
emotional health of the children concerned. Ultimately, the health of the adopted
children and the health care they receive are influenced greatly by poverty and by the
politics of the nations involved. As internationally adopted children arrive at their new
homes, their health status and needs are affected by these conditions directly. Health
19
care providers who lack knowledge about how to care for children with these
backgrounds are unlikely to meet the unique needs of the children and their new
adoptive families.
Researching the needs of internationally adopted children and their families as
they seek health care illuminates the current state of care they receive. This research
built on the knowledge gained in the pilot study. The challenges and barriers faced by
families as they attempt to integrate their internationally adopted child into their new
American family and secure quality health care for the child were uncovered. The
findings have implications for the education and practice of health care providers in
primary care and pediatric care settings. The research findings also have implications
for improving the quality of care that internationally adopted children and their families
receive.
20
CHAPTER 2
Review of the Literature
In Chapter 1, the history of the international adoption process was delineated
and the effects of this history on the current state of affairs were discussed. In this
chapter, the literature on the general backgrounds of those involved in the international
adoption process, the adoptive families, and the adopted children are reviewed. The
difficulties of the adoption process and the screening procedure for visa entry into the
U.S. also are described. The physical, behavioral, and developmental problems common
in international adoptees then are highlighted. Finally, the current literature on the
interactions of international adoptive families with health care providers is reviewed.
International Adoptive Parents and the Adoption Process
The international adoption process is expensive, highly intrusive, lengthy, and
often overwhelming. Parents must navigate through increasingly complicated legalities,
find reputable adoption agencies, and produce and notarize paperwork for their dossier
(a legal portfolio of required documents), which is required by the adoption agency and
federal and state governments as well as by the foreign government (Miller, 2005a).
The paperwork varies by state, by agency, and by whether the countries involved are
members of the Hague Convention (U.S. Department of State, 2009a). Part of the
dossier paperwork includes a “home study,” which is a process to determine if
prospective adopters are fit to be parents. During this lengthy home study process,
21
adoptive parents’ medical records, financial records, and their values, including
religious beliefs, are scrutinized. Not surprisingly, feelings of powerlessness, isolation,
and anxiety prevail among adoptive parents. To make the situation worse, the process of
international adoptions sometimes can take years to complete (Miller, 2005a).
The average cost of adopting a child from abroad is between $25,000 and
$45,000 (The Adoption Guide, 2010), and there may be additional costs for travel.
Some of the cost is offset by an available $9,000 tax credit (Internal Revenue Service,
2009). Most international adoptive parents are older, married, well educated, and part of
the middle to upper socioeconomic class. This higher socioeconomic status should
result in a more protective home environment for the adopted children. As a rule, these
parents are highly motivated to help their children succeed and will seek outside
assistance to overcome developmental delays (McGuinness, Ryan, & Robinson, 2005;
International Adoption Project, 2002). One survey revealed that 70% of international
adoptive parents who participated in the survey had college degrees, and 30% had
graduate degrees (International Adoption Study, 2002). With this level of education,
these parents usually excel at networking. One way adoptive parents seek help is
through private adoptive parent support groups. Many of these are formed and
moderated by adoptive parents themselves (Celock, 2006). Some of these groups meet
locally, while others are internet-based. The groups are a safe-haven for adoptive
parents to seek out advice on handling their adopted child’s challenges without fear of
stigma (Sanford & Sanford, 2008).
For most adoptive parents, adoption was not their first family-building choice.
Adoptions often occur after years of trying unsuccessfully to conceive a baby. Some
22
couples are able to mourn the loss of their planned biological children and then move on
to adoption. Others adopt children before their grief and loss are resolved fully, which
can lead to significant family stress once the adopted child arrives home (Cudmore,
2005). Many adoptive parents spend years struggling with numerous losses and then
must suffer through the challenges of the adoption process itself. Adding to these
struggles, the public views adoptive families as “second-best” families (Daniluk &
Hurtig-Mitchell, 2003). A study conducted by the Evan B. Donaldson Adoption
Institute (2002) demonstrated that although most Americans had a favorable opinion
about adopting children, more than 40% of the people questioned felt parenting an
adopted child was not as satisfying as parenting a biological child. Unfavorable
opinions may prevent waiting adoptive parents from seeking the outside support of
friends and family since they may fear rejection.
When the unpredictable adoption procedure finally ends with the placement of a
child, parents often struggle with the reality of sudden, first-time parenthood (Daniluk
& Hurtig-Mitchell, 2003). One author described this instant parenthood as “leapfrogging.” In essence, family, friends, and society expect the adoptive parents to know
how to parent their new child in a developmentally appropriate way. However, these
parents were deprived of a pregnancy and the subsequent developmental stages of
parenting. Instead, international adoptive parents often “leap-frog” right over infancy to
the developmental stages of toddlerhood or preschool and school age children (Weir,
2003). Even experienced parents have expressed that the arrival of their internationally
adopted (IA) child to their family was stressful and challenging. As one mother stated,
“We’d had two biological kids already but this has been much harder than expected.
23
This child has been an adjustment” (Murphy, 2009b, p. 9). While these parents work
through their transition, they also take on the daunting responsibility of managing the
health issues, developmental delays, and behavioral problems that often occur with
post-institutionalized children. These challenges may well affect the health of the
adoptive families involved.
General Background on Internationally Adopted Children
As discussed in the historical review, international adoptees tend to come from
poorer, underdeveloped nations. In 2009, the top five sending countries were: China,
Ethiopia, Russia, South Korea, and Guatemala (U. S. Department of State, 2010). The
majority of the children adopted internationally are under five years of age (University
of Alberta, 2007), and it has been shown that the younger adopted children are placed
with families, the better their outcomes. Children placed in adoptive homes after 2 years
of age have greatly increased exposure to risk factors that may lead to behavioral and
developmental delays (International Adoption Study, 2002). Most children adopted by
Americans are girls: approximately 64% are female (Gravois, 2004). This could be
influenced somewhat by China’s one child policy. Most of the IA children were raised
in orphanages, while some arrived from foster care situations (Davenport, n.d.).
Current Physical Screening Process to Obtain U.S. Visa
Although the requirements for obtaining a resident visa for the U.S. includes a
medical examination, this cursory assessment only screens for these excludable
conditions: active tuberculosis (TB), sexually transmitted diseases, human
immunodeficiency virus (HIV), mental defects, narcotic drug addiction, psychopathic
personality disorder, and leprosy (Jenista, 2002; United States Immigration Support,
24
2009). Individuals under 15 years of age, which applies to most adoptees, are not
required to have either serology tests for syphilis and HIV or a chest radiograph to rule
out tuberculosis, unless the examining healthcare provider has reason to believe the
child has been exposed to these diseases (Jenista, 2002). In 2009, the Center for Disease
Control (CDC) initiated an adjustment to this policy. Adopted children over two years
old who are immigrating to the U.S. from Ethiopia and China must be tested for latent
TB before a visa is granted. While this policy was created to prevent the spreading of
drug resistant forms of TB, the policy is creating additional legal, financial, and
emotional problems for international adoptive families. The greatest problem is that
since the testing takes place after the final adoption decree in the foreign country, the
child already is the legal dependent of the adoptive family. If the child tests positive,
this could delay the child’s entry to the United States by 12 or more months. Many
adoption proponents feel this policy is “unwarranted and harmful” to the children and
their families (Joint Council on International Children’s Services, 2009). Additionally,
international adoptees also are not required to have current immunizations on arrival to
the United States. Instead, adoptive parents simply are required to sign a waiver
agreeing to begin vaccination of the child within 30 days of arrival (U.S. Department of
State, 2006). Although current policies protect the public from a few specific
conditions, the policies inadvertently create barriers and do not determine the true
health status of the children (Bledsoe & Johnston, 2004; Jenista, 2002).
25
Physical Problems of Internationally Adopted Children
Common Infectious Diseases and Suggested Treatment in International
Adoptees
Tuberculosis (TB). A recent study done at Case Western University in
Cleveland revealed that 14% of international adoptees tested had a latent TB infection
(Mandalakas, Kirchner, Zhu, Yeo, & Starke, 2008). Another Canadian study of IA
adopted children documented that 8% of the children had a positive tuberculin skin test
after arriving at their new home (Fortin. Carceller, Robert, Chevalier, Lamarre, &
Lebel, 2007). Previous studies had identified latent TB infection in 3 to 19% of the
children after adoption (Miller, 2005a). Since many of the children have been
vaccinated with bacilli Calmette-Guerin (BCG), some clinicians incorrectly assume that
the tuberculin skin testing always will be positive and if positive, the results are
inaccurate (Miller, 2005a). Current tuberculosis experts agree that foreign-born children
with a positive tuberculin skin test are more likely to have a latent TB infection than
simply a reaction to the BCG vaccine (Mandalakas & Starke, 2004). As such, any IA
child who presents with a tuberculin skin test induration greater than or equal to 10mm
(including those with a documented history of BCG vaccination) should be considered
positive and further evaluation and treatment should be initiated (CDC, 2007; Miller,
2005a; Murray, Groth, Weitzmam, & Cappello, 2005) The American Academy of
Pediatrics (AAP) (2006) recommends that children with a positive test should receive 9
months of isoniazid treatment.
Human immunodeficiency virus (HIV). Due to worldwide HIV awareness
programs, the global prevalence of HIV infection has “leveled off” and the incidence
26
rate of new infections has decreased (UNAIDS, 2007). Despite attempts at prevention,
the number of people currently affected by this virus is astounding. Recent estimates
suggest that 33.2 million people globally are infected. In 2007, 2.5 million people were
newly infected, and 2.1 million died of acquired immunodeficiency syndrome
(UNAIDS, 2007).
IA children are at risk for HIV infection due to multiple factors such as
transmission from drug addicted birthmothers, lack of prenatal care, and unsafe medical
practices such as sharing vaccination needles among orphan children (Miller, 2005a).
Although HIV testing is not required for children under 15 years of age for entry into
the United States (United States Immigration Support, 2009), most children are
screened in countries of birth before adoption (Miller, 2005a). In a survey of 7,299 IA
children who immigrated to the United States between 1990 and 2002, only 12 children
(0.16%) were diagnosed with HIV infection (Aronson, 2002 in Miller, 2005b).
Although the incidence rate is low, IA children should be screened twice using an
ELISA test: once on arrival to their new home and then six months later (Miller,
2005a).
Hepatitis B virus (HBV). Hepatitis B infection has been identified in 5-7% of
IA children, even though most of these infected children had tested negative in preadoption screening completed in their countries of birth (Miller, 2005a). The CDC
(2004b) identified only six cases of acute HBV infection in the children adopted from
1990 to 2002; most infected children simply are carriers. HBV can be transmitted by the
sharing of common household items such as toothbrushes, nail clippers, and towels
(Miller, 2005a) and as previously noted, adoptive families have been infected by their
27
adopted children (Friede et al., 1988). IA children should be screened for HBV once
they are in the United States. If their children test positive, the adoptive parents need
education about transmission risks and all family members should be encouraged to get
vaccinated. If the child develops acute symptoms, anti-viral therapy should be
considered (Miller, 2005a).
Parasites. It has been reported that the prevalence of intestinal parasites in IA
children ranges from 6% to 51%, depending on the country of origin (Chen, Barnett, &
Wilson, 2003; Miller, 2005a; Murray et al. 2005). Not only are intestinal parasites
common, multiple parasites often are found (Miller, 2005a). According to Miller
(2005a), the most common parasites are “Giardia lamblia, Entamoeba histolytica,
Dientamoeba fagilis, and the nematodes, Ascaris lumbricoides, Trichuris trichiura,
hookworms, pinworms, and Strongyloides” (p. 254-255). Even though there has been
no documented transmission of intestinal parasites from an IA child to others (Chen,
Barnett, & Wilson, 2003), once the child is home, the parasites often are not diagnosed
promptly. Hence, possible exposure to other individuals exists (Macariola, Daniels, &
Staat, 2002). An important clinical note is that intestinal parasites are capable of
inhibiting growth in children (Miller, 2005a).
IA children should be thoroughly evaluated and screened for intestinal parasites.
Symptoms vary by parasite but some of the most common are diarrhea, abdominal pain,
and flatulence. Staat (2002) recommended stool samples be collected three times, 2-3
days apart, and evaluated for ova and parasites. After treatment, children should be rescreened to confirm eradication of the parasites (Miller, 2005a). Other parasites found
in IA children include scabies and head lice. Since institutional settings are conducive to
28
the spread of lice and scabies, IA children are at increased risk for contracting these
parasites. Miller (2005a) reports that 10% of IA children arrive home with scabies. The
current number of IA children diagnosed with head lice is unknown but one older study
reported an incidence rate of 4% (Nicholson, 1992, as cited in Murray et al., 2005).
Helicobacter pylori (H. pylori). H. pylori is a gram negative bacteria that
frequently infects the gastric mucosa. This bacterium is prevalent in institutional
settings, such as orphanages. Although infected children often are asymptomatic,
chronic infection may result in long-term gastritis. Infected children are at risk for
gastric complications, including gastrointestinal reflux, malnutrition and subsequent
growth delay, duodenal ulcers, and gastric cancer (Miller, 2005a; Murray et al., 2005).
The bacterium also reduces iron absorption, thereby contributing to iron deficient
anemia (Miller, 2005a). One study revealed an infection rate of 31% among IA children
(Miller at al., 2003).
Accurate diagnosis of H. pylori in young children presents some challenges. The
most accurate ways to screen for this bacterium are either a c-urea breath test, which
requires cooperation of the child, or an invasive endoscopy for biopsy and culture.
Serology testing is considerably less accurate. Since many IA children come from
institutional settings, they should be considered to be at increased risk for H. pylori
infection. If the child presents with any symptoms, evaluation and antibiotic treatment
are recommended (Miller, 2005a).
Global Spreading of Infectious Disease Via International Adoption
The current visa medical exam does not screen for many common infectious
diseases nor does it include genetic or developmental screening. Unfortunately, this lack
29
of screening creates a risk of disease transmission to adoptive families and the public,
and also fails to reveal significant physical or developmental problems the adopted child
may have. Several documented cases of infectious disease transmission, as a direct
result of international adoption, already exist. Below are several examples.
In the summer of 1998, a 36-year-old woman living in rural North Dakota began
to experience hip pain. Her medical evaluation revealed tuberculous arthritis, which had
caused not only a pelvic abscess but also osteomyelitis of her femoral head. Since North
Dakota has a low incidence of tuberculosis and the woman had not traveled recently,
the physicians began to search for the source of infection. The woman and her husband
had adopted 7-year-old twin boys from the Marshall Islands in 1996. When evaluated
by chest radiography, one of the boys was diagnosed with extensive tubercular disease.
Contact testing revealed that the boy had infected 120 people, 56 of them young
children. The child had TB symptoms: he was 11 pounds and 2 inches shorter than his
twin, had experienced a dry cough for months, and frequently fell asleep during class as
reported by his classroom teacher. The source child had been screened inappropriately
on arrival to the United States; a tuberculin skin test was given but not read (Curtis et
al., 1999). This was a preventable incident.
Adoptive parents have contracted hepatitis B (Friede et al., 1988) and hepatitis
A (Wilson & Kimble, 2001) from their adopted children. In Belgium, not only did
seven adoptive parents contract acute hepatitis B, but a teacher, grandparent, and
teenage did as well (Sokal, Van Collie, & Buts, 1995 as cited in Chen, Barnett, &
Wilson, 2003). In the United States in 2001, a measles outbreak that involved people in
eight states was traced to children recently adopted from China (CDC, 2001). Three
30
years later, a similar outbreak occurred, where 9 of 12 adopted Chinese children
developed clinical symptoms of measles while traveling home, exposing adoptive
families, travelers, and embassy workers (CDC, 2004a). In 2006, three more cases of
measles contracted by adults in China on an adoption pick-up trip were reported in
California, Missouri, and Washington (CDC, 2006). The CDC’s (2006) report
highlighted that even vaccinated individuals still can contract measles.
In 2002 upon arrival to the United States, a 10-month-old Russian infant was
diagnosed with pertussis. Not only had the adoptive family been exposed but also the
unsuspecting passengers and crew of the airline flight from Russia (CDC, 2002). In
2003, adoptions from China were suspended temporarily because, upon return to the
United States, traveling adoptive families were hospitalized for suspected severe acute
respiratory syndrome (SARS), a disease that has a 10% mortality rate (Miller, 2005b;
Murray et al., 2005). International adoption creates the potential for global spreading of
epidemic illnesses, including SARS and avian influenza (Krilov, 2004). Appropriate
and careful screening of these children upon arrival to the U.S. is imperative.
Immunizations in Internationally Adopted Children
Obviously, with the risk of infectious disease transmission, international
adoptive parents should ensure adequate screening and vaccination of their children.
Unfortunately, the foreign medical records of IA children often are inaccurate;
therefore, all immunization records should be scrutinized carefully (Narad & Mason,
2004; Miller, 2005a; Verla-Tebit, Zhu, Holsinger, & Mandalakas, 2009). Seventy new
adoptees from 13 different countries, with documentation of vaccination abroad, had
immunization titers drawn upon their arrival in the United States. Despite documented
31
vaccination, 50% lacked immunity to pertussis, 10% lacked immunity to measles, 19%
lacked immunity to mumps, and 16% lacked immunity to rubella (Miller, Comfort, &
Kelly, 2001). Murray et al. (2005) has hypothesized that the discrepancy between the
foreign vaccine records and actual vaccination titers of international adoptees can have
multiple explanations: records may be falsified to hide poor care; adoptees may receive
expired, diluted, or improperly stored vaccines; or the children are so malnourished
their immune systems are not capable of responding to the vaccines given. For this
population, the APA (2003) recommends vaccine titers be drawn on all IA children and
any questionable vaccines repeated. Another equally safe and more cost conscious
option for children less than one year of age is to simply re-vaccinate (Murray et al.,
2005).
Other Physical Challenges
IA children are at risk for various conditions: malnutrition; delays in their
growth and physical development; exposure to environmental toxins, such as lead; and
prenatal exposure to drugs or alcohol (Miller, 2005a). One study revealed that nearly
60% of Russian born children residing in the Murmansk region had phenotypic features
of fetal alcohol syndrome (Miller el al., 2006). IA children have been diagnosed with
numerous acquired and congenital conditions such as thalassemias, precocious puberty,
lactose intolerance, and rickets (Miller, 2005a).
Consequences of the Physical Problems on Adoptive Families
With the cursory visa screen and the less than ideal circumstances of birth
countries, it follows that adopted children often arrive at their new homes with physical
problems or they experience acute illness shortly thereafter. One study revealed nearly
32
50% of the adopted children experienced an acute illness within the first month of
arrival home (Jenista & Chapman, 1987). Findings from the pilot study discussed earlier
support these findings. The international adoptive mothers revealed that their adopted
children did indeed arrive to their new homes acutely ill. Although none of the illnesses
were life threatening, it was apparent as the mothers shared their stories of homecoming
that they simply were unprepared for the reality of caring for a sick child. This was
made worse by the fact that they did not even ‘know’ their child yet and so felt helpless
in comforting and appropriately caring for them. One mother stated:
We just didn’t know the basics. We were all ready for the big stuff but didn’t
know the little parenting stuff. Like how do you give medications? What is this
child usually like? I mean we were like strangers you know. I was clueless.
(Murphy, 2009b, p.8)
Not only did the adoptive mothers have to cope with parenting a new child but they also
were overwhelmed by how to deal with the illnesses their children brought with them.
Another recent study revealed that although most international adoptive families were
prepared for minor medical problems, they were not prepared to deal with the
psychological and developmental issues that came with greater medical problems
(Paulson & Merighi, 2009). Adoptive families must not only adjust to a new family
member but they also may have to cope with their family, friends, and neighbors being
exposed to the diseases their child brought home. This is a very different reality than a
biological family excitedly sharing their healthy newborn with their closest relatives
and friends.
33
Behavioral and Mental Health Needs of Internationally Adopted Children
In addition to physical challenges, behavioral and mental problems also are
commonly found in IA children. These children often present with symptoms of
depression, autistic-like behaviors, inattention, over-activity, and aggression (Miller,
2005). A recent study revealed common psychological problems among 320 IA
children: “Attention deficit disorder, 12%, attention deficit/hyperactivity disorder, 11%,
reactive attachment disorder, 11%, mental retardation/developmental delay, 9%, and
post traumatic stress disorder, 7%”(Paulsen & Merighi, 2009, p. 11). One large cohort
study, which included 11, 320 international adoptees, found that adults adopted
internationally as children were more likely to commit suicide, abuse drugs and alcohol,
be admitted for psychiatric disorders, or display criminal behavior than other nonadopted immigrants (Hjern, Lindblad, & Vinnerljung, 2002). An important note is that
most international adoptees do not have long-term behavioral problems, although they
are referred for mental health services more frequently than their non-adopted peers.
This data was obtained by a large meta-analysis reviewing 25,281 cases (Juffer &
IJzendoorn, 2005).
Attachment difficulties also are present in many international adoptive families.
Attachment is a bi-directional process that requires both parent and child to develop a
bond. Attachment problems result in these families when this reciprocal bond fails to
develop (Murphy, 2009a). The newly arrived child is busy mourning the loss of his
previous life, while adoptive parents still may be trying to resolve underlying infertility
issues (Cudmore, 2005). Considering the impact of attempting to deal with all of these
challenges simultaneously, while also managing an acute illness, it is not surprising that
34
attachment between parents and child can be affected. Children who require
hospitalization during the early weeks home may have additional difficulty with
attachment (Smit, 2000). As discussed earlier, the child’s physical problems may
contribute to the development of behavioral and developmental challenges.
Unresolved behavioral and mental challenges can have dire consequences for
adoptive families. Some surveys have indicated that as many as one quarter of
international adoptions end in “disruption” or dissolution of the adoption. The adopted
children then are placed either in state foster care systems or into another adoptive home
via private adoption (Chang, Dubreuil, & Grey, 2008). One adoptive mother allegedly
ended her foreign adoption by returning her adopted son to his birth country of Russia.
The eight year old child literally was placed unescorted on an international airline flight
back to his homeland. The child carried a letter written by his adoptive mother,
explaining that she was returning the child due to his psychological problems
(Vasilyeva, 2010). Worse yet, the most horrific result of the failure to form attachments
in international adoptive families is that a few overwhelmed adoptive parents have
murdered their adopted children (Wingert, 2007).
While there are some services available to help international adoptive families
cope with their child’s behavior, the cost can be prohibitive. Additionally, space
available for treatment often is limited and the wait time for care is long. One example
of this is “Ranch for Kids” located in Montana. In 1999, a registered nurse, Joyce
Sterkel, opened this treatment center for troubled foreign adopted children. She has
come to be known as the “adoption whisperer” due to her ability to connect with
international adoptees who have severe psychological and behavioral problems. While
35
her treatment appears to help many families, the camp staff can care for only 40
children at a time and has an extensive waiting list (Chang, Dubreuil, & Grey, 2008).
In the pilot study (Murphy, 2009b), all of the mothers described a difficult,
transitional time after the adoption. The mothers expressed how their child’s behavior
was a source of stress. They also described frustration about meeting their child’s
mental health needs during the transition. The mothers depicted babies that fussed
inconsolably and/or appeared frightened. One mother shared: “I had to be physically
with her every minute; she had to at least be able to see me or she screamed” (Murphy,
2009b. p. 9).
Developmental Health Needs of Internationally Adopted Children
From a developmental perspective, international adoptees also present with
multiple challenges. Since these children come from backgrounds of deprivation,
developmental delays are quite common (Narad & Mason, 2004). Speech-language
pathologists treat approximately 57% of international adoptees and about one third of
IA children have significant speech and language problems (Glennen & Masters, 2002;
Pollack & Bechner, 2000 in Glennen, 2002). Some international adoptees also have
sensory integration dysfunctions, as well as trouble with gross and fine motor skills
(Narad & Mason, 2004; Miller, 2005a). These children often experience learning
disabilities and cognitive impairments as well (Miller, 2005a). A recent study
examining 320 international adoptees revealed these developmental challenges:
“educational development, 24%, language development, 23%, social skills, 21%,
auditory processing, 18%, cognitive development, 17%, sensory development, 17%,
nightmares, 17%, night terrors, 16%, fine motor skills, 15%, bed-wetting, 13%, gross
36
motor skills, 10%, and visual development 10%” (Paulsen & Merighi, 2009, p. 11). Not
surprisingly, the more developmental problems the adopted child has, the less satisfied
the parents are with the adoption (Paulsen & Merighi, 2009). One mother, from the pilot
study, succinctly summed up the multiple challenges of international adoptees with this
statement: “These kids are like other kids except they come with a lot more baggage”
(Murphy, 2009b, p. 9).
International Adoption Medicine
In the past two decades, there has been a proliferation of descriptive research
regarding the medical needs of IA children and recognition of the need to screen these
children thoroughly (Welsh et al., 2007). As a consequence of this research, pediatric
clinics that specialize in ‘international adoption medicine’ have developed (Welsh et al.,
2007). Additionally, the AAP developed a subspecialty group called The Section on
Adoption and Foster Care (SOAFC). Full membership is available to physicians, with
an affiliate membership available to non-physicians interested in this specialty.
Membership is voluntary and requires no certification. The group hosts continuing
education seminars nationwide in an attempt to disseminate information on this
emerging field. There are currently 200 physician members (American Academy of
Pediatrics, n.d.).
International adoption clinics (IAC) provide adoptive families with multiple,
complex services, including both pre- and post-adoption care. Before adoption,
physicians review medical records and videos on referred children and make
recommendations on the ‘medical risk’ of these children. Parents also are offered
counseling on appropriate medical precautions for travel abroad. After the children
37
arrive in the United States, they receive a thorough medical evaluation as well as a
developmental screening. If needed, referrals are made to appropriate specialists, such
as speech or occupational therapists. Often, the international adoption physician works
in conjunction with the family’s general practitioner (Welsh et al., 2007).
Unfortunately, there are no ICD-10 codes for the specialty and as a result, the health
insurance industry neither recognizes nor reimburses this specialty (Miller, 2005a).
Parents who seek this care must have the financial means to do so. After spending
thousands of dollars to complete the adoption, many parents find this additional expense
prohibitive.
International adoption medicine has been guided by protocols suggested in The
American Academy of Pediatrics’ Red Book (AAP, 2003). Recently, an international
adoption specialist practicing at Tufts University Medical Center in Boston published
an additional comprehensive practice guide, The Handbook of International Adoption
Medicine (Miller, 2005). Both books contain practice guidelines based on available
research and consensus of professional opinion (Welsh et al., 2007). Unfortunately,
according to Welsh et al. (2007), there has been limited research concerning the “actual
impact of these (IAC) services on internationally adopted children and their families”
(p. 292). Also interesting is that there has been no research to assess if children
evaluated by general practitioners, rather than by adoption specialists, have been
properly and thoroughly screened according to the suggested guidelines (Welsh et al.,
2007).
38
International Adoptive Families and General Health Care Providers
There are few international adoption clinics in the United States. If there is no
clinic within a reasonable distance, families may not have the opportunity to seek
specialty care. International adoptive families who seek care from general providers
report many obstacles. For instance, many adoptive parents believe the sketchy medical
histories and highly questionable immunization records of their children added to the
stress of obtaining appropriate healthcare for their new child. Some adoptive parents
have experienced providers who completely were unaware that foreign medical records
were likely to be inaccurate or that immunization records often were falsified (Murphy,
2009b; Smit, 2000). Additionally, adoptive mothers revealed that healthcare providers
lacked basic knowledge about IA children and the difficulties these families faced
during their early union. They reported frustration and stress while communicating with
providers and also questioned the quality and appropriateness of the care received
(Murphy, 2009b). Other nursing studies support these findings, highlighting that
adoptive parents often experience even more stress than biological parents when
interacting with the healthcare system (Smit, Delpier, Tarantino, & Anderson, 2006;
Smit, 2000). Contributing to the poor communication with providers, international
adoptive parents often are hesitant to reach out for help because they feel they do not
have the “right” to complain. In other words, by adopting, adoptive parents chose this
situation and so feel they must “live with it” (Peterson, 1997).
Healthcare providers sometimes responded to adoptive families with
insensitivity, which inadvertently contributes to parental stress (Smit, Delpier,
Tarantino, & Anderson, 2006; Smit, 2000). For example, two nursing research studies
39
addressed the lack of knowledge healthcare providers have concerning legal adoption
issues, such as a name change or consent for care (Smit et al, 2006; Smit, 2000). Many
adoptive families give their children new names once they are adopted. Although the
family begins to use the new name immediately, it often takes months to legally change
the child’s name in domestic court. Providers may misunderstand the importance of
honoring the child’s new adoptive name and instead refer to the child by their legal
name. A child whose adoption has not been finalized in domestic courts, but who is
under the custody of the adoptive parents, is the legal responsibility of the adoptive
parents. Adoptive parents have the right to make all medical decisions and give consent
for the child even before finalization. Confusion over these issues causes stress for
adoptive families (Smit et al., 2006; Smit, 2000).
International adoptive families and their child often struggle with various issues
related to identity (Smit, 2002) and this also may contribute to stress. For example,
strangers as well as health care providers frequently ask international adoptive families
inadvertently invasive questions in public (Friedlander et al, 2000; Murphy, 2009b).
One such question many parents experience is, “how much did your child cost?” If the
child is old enough to comprehend the question, this can impact the child’s self esteem
negatively. One mother in the pilot study reported that the Emergency Room staff
asked inappropriate questions of her and her spouse. She stated that “the staff asked ‘do
you have infertility problems?’ which I (the adoptive mother) found invasive. Asking us
why we adopted is private. What did our infertility have to do with our child
wheezing?” Close friends and family may compliment the adoptive parents on “saving
the child” and remind the child how he/she was “blessed” or “lucky” to be “chosen.”
40
These words label the child as “different” and may leave the child feeling like a charity
case (Coughlin & Abramowitz, 2004).
These feelings of discrimination often lead to alienation. As discussed earlier,
the findings of the pilot study revealed that the mothers struggle through a rough initial
transition to motherhood with their newly adopted child. As they navigate through this
tricky time, healthcare providers failed not only to support them but actually alienate
them more (Murphy, 2009b). Sadly, another recent nursing research study (Rykkje,
2007) supports these findings. One mother clearly declared her frustration with the lack
of nursing support she received with this statement:
I came (to the nurse community clinic) with my problems but felt they were
minimalized. It was evident that the baby reacted to a change in environment – it
took a few months before his first smile, and it was difficult to establish eye
contact with him. I was quite concerned about the baby but received no support
or understanding. (p. 510)
International adoptive families feel marginalized by healthcare providers (Murphy,
2009b). Interestingly, this marginalization may cause them to withhold important
information from healthcare providers. This quote illustrates this concept well:
I didn’t share medical records with the doctor because, um, they said Katie was
mentally retarded and that she had been treated for syphilis after birth. I didn’t
want the records to bias the doctor. You know, like that her birthmother was a
prostitute or something (Murphy, 2009b).
41
Chapter Summary
IA children often arrive at their new adoptive homes with a host of physical,
behavioral, and developmental problems. As discussed, these problems exist due to
multiple conditions present in the countries of birth. Adopting a child places social and
economic demands on a family that force the family to restructure itself (Bird, Peterson,
& Miller, 2002). The physical, behavioral, and developmental problems of the newly IA
child also place competing demands on the family. Understanding the history,
background, and challenges of international adoptive families allows healthcare
providers to better meet their needs. Understanding the current experience of obtaining
healthcare for an internationally adopted child highlights areas of care that need
improvement.
42
CHAPTER 3
Methodology
Design
This study was a qualitative study using a phenomenological approach.
Research was conducted to answer the question “What is the lived experience of
adoptive mothers as they seek healthcare for their newly internationally adopted child?”
The study of lived experience is based in the philosophy and method of
phenomenology. In this type of research, the investigator seeks to answer the question
“what is this or that kind of experience like?” (Van Manen, 1990, p. 9). Phenomenology
seeks to explain a human experience as only those who have lived the experience can
reveal. Phenomenological research reaches beyond just describing the experience but
seeks to delineate the underlying meaning of the experience. Ultimately, the results of
this type of research can provide a thoughtful, attentive way to approach practice (Van
Manen, 1990).
Van Manen’s (1990) phenomenological approach requires the researcher to be
acutely aware of the research question being asked. Otherwise, the researcher may easily
wander away from the driving force of the research and become distracted by extraneous
findings. To effectively pursue the answer to the research question, the researcher must
approach research subjects carefully with a well designed interview plan. Van Manen
43
(1990) describes interviewing as collecting “personal life stories.” As such, the
interviews focused on the actual stories of the participants as close to the way the
experience was “lived” as possible. This was accomplished by keeping the interview
focused on the experience itself. The goal of phenomenological research is to focus on
the “level of concrete experience” (Van Manen, 1990, p. 68). Once the interviews were
completed, the researcher then was challenged with discerning the underlying meaning of
the lived experience of the other through hermeneutic phenomenological reflection (Van
Manen, 1990). This process is described in the data analysis section.
Data Sources
The participants in this research study were 12 mothers of internationally
adopted children. Inclusion criteria included adoptive mothers who: 1) had completed an
international adoption successfully, 2) had an internationally adopted child who
received health care from a licensed provider within the first 6 months of arriving to the
United States, 3) whose internationally adopted child had been in the adoptive home at
least one year, and 4) whose child was adopted before three years of age from a third
world nation. In the earlier pilot study, both adoptive parents (mothers and fathers)
were recruited but adoptive mothers were the only parents who responded and
participated in the data collection. This study sought to build on the initial pilot study,
and as such, continued to explore the experience of international adoptive mothers. The
participants were not limited either by a specific birth country or by numbers of
dependent children, whether adopted or biological. Consistent with a phenomenological
44
perspective, the actual number of participants was determined by the richness and
saturation of the data. Participant interviews continued until data saturation was
achieved; in this case, by the ninth interview. However, the researcher conducted three
additional interviews to ensure data completeness as well as confirm emerging themes
from the earlier data. General demographics of the adoptive families were recorded. The
demographic questionnaire can be found in Appendix A.
Procedures for Data Generation
Before data collection, permission to proceed with this study was sought from
the Institutional Review Board (IRB) at Florida Atlantic University. The IRB approval
is located in Appendix B. It is important to reveal that the researcher is an advanced
registered nurse practitioner as well as the parent of an internationally adopted child.
Therefore, the process began with the researcher exploring and writing about her
personal experience with obtaining healthcare for her child after international adoption.
Additionally, the researcher kept a journal to document personal feelings and thoughts
related to her experience with international adoption. By becoming distinctly aware of
his/her own beliefs and perceptions about a particular phenomenon, a phenomenological
researcher can avoid biasing collected data with preconceived notions. ‘Bracketing,’ as
this process is called, produces more reliable results.
Using a snowball technique, the researcher contacted other known adoptive
parents in the Miami-Dade, Broward, and Palm Beach areas and also contacted other
local clinicians’ offices in order to recruit participants. Once identified, participants
45
were contacted by telephone or email and were asked if they would like to participate in
a conversation about their experience of seeking health care for their internationally
adopted children. If the mothers agreed to participate in the study, the researcher
obtained written, informed consent prior to each interview. Since all the interviews were
conducted on the telephone, informed consents were obtained either by fax or by email.
The risks and benefits of participating in the study were disclosed to those
recruited, although minimal risk was expected. However, since conversations about
personal information related to their child’s adoption and health status could be
stressful, any adoptive mothers who experienced significant stress during or after the
conversations were referred to their health care provider for support. None of the
mothers voiced any distress. The participants had the right to refuse inclusion in the
study as well as the right to withdraw from the study at any time; they also had the
right to refuse to answer any question or questions asked during the interview.
Semi-structured, one-on-one interviews with the participating adoptive mothers
were conducted by telephone, as this was what the participants preferred. The shortest
interview was 14 minutes in length and the longest lasted 52 minutes. With consent of
the participants, the interviews were audio-taped and field notes were taken. When the
interview was completed, the participant was asked to recommend the study to others
and was provided with a contact number for any future voluntary participants to call.
In several cases, follow-up interviews were needed for the researcher to clarify her
understanding of the participants’ statements; these were arranged at the convenience of
46
the participants. The researcher interviewed the participants in a humanistic way that
built rapport and established the adoptive mothers as collaborators in the research.
The following questions guided the interview:
•
Tell me about your child’s health status when he/she arrived to the United
States after the adoption.
•
Tell me about your first visit with your healthcare provider after your child
arrived home.
•
Did your child experience an illness or medical problem during the first year
home? If so, tell me about it. How did you obtain healthcare services for
your child during this time? What was it like for you and what do you think
it was like for your child?
•
Did your child experience a developmental delay during the first year home?
If so, tell me about it. Was your health care provider involved in diagnosing
the delay? If so, tell me about this experience.
•
Did your child experience any emotional or mental health problems during
the first year home? Was your health care provider involved in diagnosing
and treating this problem? If so, tell me about this experience.
•
Did your child’s “status” as an internationally adopted child affect his/her
health? If so, in what way?
•
Did your child’s “status” as an internationally adopted child influence the
healthcare your child received? If so, in what way?
47
•
Can you share any stories of adoption-related experiences (positive and/or
negative) you experienced with healthcare providers?
•
If there were one thing you would like your healthcare provider to know
about international adoptive family needs during the early months home,
what would it be?
Some of these questions were used in the earlier pilot study. Based on the findings of
that study, additional questions were incorporated. This list of questions served only
as a guide for the interview. Additional prompts and follow up questions were asked to
clarify information and enhance understanding.
With participant agreement, all conversations were digitally audio-taped. All
audio-taped conversations then were transcribed verbatim, either by the investigator or
by a paid transcriptionist, who signed a confidentiality agreement. Once data analysis
was completed, the digital audio-tapes were erased. When the interviews were
transcribed, any identifying names and agencies that were recorded were changed to
pseudonyms. Any field notes taken also contained pseudonyms; the actual names of
participants were removed. Each transcript and demographic data sheet was assigned a
code.
Data Analysis
Van Manen’s (1990) methods were used for data analysis. First, the data was
transcribed from the audio tape to a typed transcript, either by the researcher or the
transcriptionist. Second, the typed transcripts were read while simultaneously listening
48
to the audio tape to ensure the words spoken were transcribed accurately. The next step
was immersion in the collected data. Reading and re-reading the transcribed texts as well
as listening to the audio-tapes repeatedly accomplished this.
After immersion, data analysis proceeded with three approaches: sententious,
selective, and detailed. The sententious approach required the researcher to evaluate the
entire text as a whole and determine a phrase that “captures the fundamental meaning of
the text as a whole” (Van Manen, 1990, p. 93). During the selective approach, the
researcher read the text and identified particular participant statements that appeared to
be essential to describing the phenomenon. This was done by using Van Manen’s four
existential life worlds as guides for reflection (1990). Lastly, the detailed approach
entailed a line-by-line reading, which challenged the researcher to discover the meaning in
each line of text (Van Manen, 1990). As the data were analyzed in this fashion, themes
began to emerge. The final process was to express these findings in a text that reveals
the underlying meaning of the lived experience of the participants.
Rigor
Munhall (2007) contends that there are criteria for readers of phenomenological
research to consider when deciding if a particular study has rigor and therefore merit.
Essentially, trustworthy phenomenological research is true to its participants. The
findings represent, describe, and effectively reveal the meaning of the lived experience of
the participants as they experienced it. The final narrative that shares the participants’
49
experience not only should represent their lived experience accurately, but should be
written is such a way that the text is relevant, responsible, and clear (Munhall, 2007).
To ensure that the findings of this research study meet the standards for rigor, an
advanced registered nurse practitioner, who has a doctoral degree as well as experience in
phenomenological research, independently reviewed the texts, themes, and
interpretations of the themes. Additionally, member checks were completed with three
of the participants. This entailed contacting the participants, presenting the results to
them, and asking for critical feedback before the final revision of the research. This
ensured that the final narrative accurately reflected the lived experience of the
participants. Lastly, an audit trail that included recruitment of the snowball sample,
bracketing of biases, field notes, and thematic coding was recorded. This allows readers
of the research and future researchers to follow easily the particular path this researcher
took. Lastly, the researcher’s dissertation chair reviewed and approved the transcripts
and data analysis.
50
CHAPTER 4
Results
Introduction
This chapter presents the findings of the study. First, demographics of the
participants and their children are shared. Next, rich descriptions of the adoptive
mothers’ stories are provided. Third, a detailed explanation of how the data was
analyzed is offered, followed by descriptions and explanations of the themes that
emerged from the data. A table is offered to detail the themes, which are supported by
current literature, and to provide excerpts of the data and quotes from the participants.
The essence or overall meaning of the mothers’ experiences of obtaining health care for
newly adopted children is revealed. Finally, the criteria for evaluating the study’s rigor
are explained.
Demographics
Twelve international adoptive mothers were interviewed. These mothers ranged
in age from 33 to 55 years, with 42 being the mean age. Two of the mothers were
single; the others were married at the time of the adoption and still are married. Three of
the mothers held graduate degrees, six had undergraduate degrees and the remaining
three were high school graduates. Nine of the mothers were employed; two of the
mothers were registered nurses, while the other participants worked in business,
administration, or education. The current ages of the adopted children ranged in age
51
from 2 to 9 years. All of the children were adopted between 9 months and 22 months of
age. The mean time in the United States after adoption was 3.8 years. Nine of the
children were female and three were male. Two children were adopted from Guatemala,
three were adopted from Russia, and the remaining seven were adopted from the
Republic of China. Three of the children were raised in foster care situations initially;
the other children were cared for in orphanages.
Procedures
All of the participants were recruited via a snowball method. Initially, I began
the recruitment by contacting local adoptive parents who were known to me and asked
if they could identify potential participants. I also contacted nurse practitioner
colleagues in Florida and asked them to help me recruit participants. I provided my
email address and telephone number as a way for potential participants to contact me.
As a result of these recruitment methods, I received either email addresses or telephone
numbers of possible participants. If I received an email address, I sent an email to the
prospective participant explaining my study and asking if they would be interested in
participating. I also attached the consent form to the message. If I received a telephone
number for the participant, I called the prospective participant, explained the study, and
asked if they would be interested. For those mothers who verbally expressed an interest
in participating, I obtained their email address and emailed them the written consent
form. Once I received the participant’s signed consent form via email or facsimile, we
arranged a time for the interview through email communication. Although the mothers
who lived locally were given the option of a live interview, all of the mothers chose to
52
be interviewed on the telephone. Their choice often was explained as “being more
convenient.”
At the scheduled time of the interview, I called the participants at the telephone
number they had provided. I initially took some time for casual conversation. I then
reviewed the consent form again, confirmed that they were in agreement with being
audiotaped, and began the interview. For the first few interviews, I followed my
interview guide closely. As the interviews progressed, I began to expand the questions
as my perspective on their experiences grew. For instance, in later interviews I tended to
ask more questions concerning their definitions of health. I also learned which questions
tended to be unclear to the mothers, and re-worded them to gain more detailed
information. At the end of the interviews, I asked them if there was anything else they
would like to share and whether they had any friends who also might be interested in
participating. In this way, I kept my snowball recruitment method rolling. I also asked
them if I could contact them in the future if I had any additional questions and for
member checks. After I began data analysis, I did contact three of the participants for
brief follow up questioning, using this time to review their initial interview responses
and to confirm my understanding of their experience.
The Interviews
Connie
An adoptive parent whom I have known for quite some time gave Connie’s
name and email address to me. Both mothers are members of an online support group
for families who have adopted from China. I called Connie, a 35-year-old white mother,
around seven o’clock in the evening. She had told me this was a good time to talk
53
because dinner would be over and her kids would be playing, leaving her free to speak
to me. Connie answered the telephone sounding a little tired. I could hear her children
playing in the background. I confirmed with her that this was a good time to talk and
she assured me it was. At the beginning of our conversation, I revealed that I also was
an international adoptive mother. She volunteered that she and her husband had turned
to international adoption after they suffered secondary infertility. The couple has a 9year-old biological son. She also shared with me that she was a nurse educator with a
graduate degree. Her adopted daughter, Kelly, was born in China and arrived to the
United States at 10 months of age. They have been an adoptive family for three years.
I began by asking Connie about her child’s health status upon arrival to the
United States. Connie shared that Kelly had arrived home “completely healthy.” She
seemed proud to report that Kelly was of average weight and height on the U.S. growth
charts. She emphasized that Kelly was healthy and free of any problems. I prompted her
to tell me about her first visit to her health care provider. With this prompt, Connie’s
tone of voice changed slightly. She seemed to be trying to remember this event. Connie
reported that about three weeks after her daughter arrived from China, she was
diagnosed with bronchitis. The child had a very high fever that “would not go down
even though we gave her Motrin and Tylenol.” She went on to describe in detail how
Kelly was chronically ill her first year home. She explained that the child had frequent
respiratory infections and was hospitalized with pneumonia several times. Connie took
her child to specialists, a pulmonologist and a gastroenterologist, to try to determine the
cause of her child’s frequent illness. Connie also reported that Kelly had a significant
speech delay and “emotional problems.”
54
When Connie was asked if she felt that her child’s status as an internationally
adopted child affected her health, she replied,
She seemed to be the absolute most healthiest child when we got to China...So I
felt like she was really healthy when we brought her home but then we got her
home. And it seems like the emotional stress of the adoption, the change in
climate, the change in culture, the change in house structure, not being in a crib
with another baby, that she just became very ill. I just felt like it was the stress
of the whole household change, the whole culture change, and living with
people she did not know...while that whole period was going on, she was
extremely stressed out and this made her sick.
I questioned Connie about her child’s emotional problems. Connie explained
that Kelly seemed to have an aversion to males. She believed this dislike of males
stemmed from the fact that all her care providers in the orphanage had been female. She
went on to explain that the only male her daughter had known was the orphanage
director who held an authoritative role. Connie stated when “a male authoritative figure
would approach her, she would lose it and cling to me...even for hours after the male
left.” This behavior occurred from the first day that Kelly was placed in her arms.
“When they gave her to us, she was screaming. By the time we got back to the hotel
room (in China), she only screamed when my husband was in the room. So I don’t
know if it was his voice or what but she wanted nothing to do with my husband while
we were in China.” This behavior continued after arrival to the United States. Connie
reported that when Kelly had to visit the specialty doctors, both of whom were male,
“she would rescind back, we would come home and she would not sleep for days. She
55
withdrew back and allowed only me to hold her, not even my husband.” Connie
expressed that the physicians seemed to believe that Kelly’s behavior was “typical
stranger anxiety” and that they failed to see that her behavior was related to her
“adoptive process” as Connie believed. She supported this assertion with the fact that
Kelly did well with her primary pediatrician who was a female. She shared that she “did
well with this doctor and allowed the practitioner to touch her and listen to her lungs
without crying or pulling away.” On a follow up phone call to Connie, I asked her if she
thought her child might have been abused while in the orphanage. She quietly reflected
on this and stated that her daughter had “marks on her thighs” from being strapped to a
potty chair for hours but that she did not think her child had been physically or sexually
abused intentionally.
When asked to describe her daughter’s emotional problems in greater detail,
Connie shared that the first year had been a difficult one. Kelly sometimes “ignored
anything that I said to her” unless Connie stood physically close to the child and
achieved eye contact. Initially, Connie’s husband, Doug, worked from home and was
able to stay home with Kelly for the first eight months. Connie stated that everything
seemed fine and that father and daughter had bonded “or at least, we thought they had
bonded.” But when Doug took a new job that required him to leave the house each day
and Kelly entered daycare, Kelly withdrew and regressed. She “wanted back on the
bottle” and returned to diapers after months of successful potty training. She had sleep
disturbances and acted out, refusing to allow Doug to touch her. Connie quietly
revealed that “if I left her home with my husband, then she would sit and cry when I got
home, for up to four hours, relentlessly. I could be holding her the entire time but
56
nothing would pacify her.” Eventually, Connie and her husband sought professional
help for their daughter from a therapist. Kelly and her family received therapy to help
them bond.
When I asked Connie if she thought Kelly’s status as an international adoptee
influenced the care she received in the U.S., she shared that she felt that health care
providers lacked experience with dealing with the emotional health problems often
found in internationally adopted children. Connie expressed sadness that her primary
provider seemed unaware that very young adoptees can have difficulty with attachment;
the provider also was unaware of resources available for adoptive families. She shared
her initial struggle to parent her adopted daughter and how this made her feel
inadequate. Connie said, “I could handle the illness and the fevers and getting the
bronchitis and the cough because that is a part of motherhood. But the shunning, the not
being able to look into my eyes, knowing that we were doing it (bonding) wrong is what
hurts the most.” She expressed frustration and guilt with being unable to meet her
daughter’s needs or with being unaware that perhaps her adopted daughter had different
needs than those of her biological son. Throughout the interview, Connie shared her
frustration with lost time. “We thought she felt safe, if we had done more of the
attachment stuff (learned in therapy) we would have picked up earlier that something
was wrong. We could have made her feel safe with us earlier.”
After the interview concluded, we spoke a bit about our adopted children and
she mentioned how being a nurse made the “illness part” easier. She mentioned that she
wondered what this experience would have been like for someone who was not a health
care provider. I hung up the telephone wondering the same thing.
57
Louise
A local adoptive parent that I know referred Louise, a 55-year-old white, single
mother residing in South Florida, to me. Louise’s daughter, Brittney, was adopted at the
age of 14 months from Russia and is now 9 years old. Louise holds a Bachelor’s degree
in business and had retired from a government job recently. Brittney is her only child.
Louise described her daughter’s health status on arrival to the United States as
“basically healthy” despite the fact that her child arrived with an acute illness. “She
came with a cold and a sinus infection and actually the first time I saw her at the
orphanage, she had that runny nose.” Although Louise repeatedly asserted that her
child’s health status was “pretty good” and that “she was a strong kid,” she revealed
through the course of the conversation that Brittney was significantly underweight, had
strabismus, likely had been premature at birth, was unable to tolerate solid food, had a
significant speech delay, and displayed numerous behavioral problems.
When I asked Louise about her first visit with her health care provider, she
prefaced her answer by revealing that her daughter’s pediatrician actually was a family
member. Before the adoption, he had reviewed a videotape the orphanage had made of
Brittney and also carefully reviewed her medical records, including vaccines, after her
arrival. Louise reported that the pediatrician disregarded her daughter’s foreign
immunization records and chose to re-vaccinate her. He also ordered blood tests and a
TB test. She expressed frustration that her daughter did not receive any additional
testing:
58
I asked him about lots of common conditions that come from an orphanage and
from my research had a list (of conditions) but he didn’t do any testing for
them...He basically told me he could know (if she had any conditions) just by
looking at her, like HIV. He told me the she doesn’t have HIV or AIDS. Now
how he knew that, I don’t know because that is a separate blood test and I don’t
think he did it.
I asked Louise to tell me how she felt while obtaining health care for her child.
She revealed frustration with her lack of knowledge about her child’s past in Russia.
She described this unknowing as an uncomfortable position. She struggled to fill out
forms provided by health care providers and it made her “feel funny.” When questioned
by health care providers about why she didn’t fill out forms completely, despite writing
“adopted at 14 months of age” on the paperwork, she felt frustrated stating:
Well, look at the top, she was adopted and I didn’t fill it out because I don’t
know. I mean I don’t know her history... I don’t know about the birth mother. I
don’t know if she was healthy or not when she had the child. I am not the
birthmother.
When her child has diagnosed with strabismus, Louise shared that she wondered if her
prematurity had caused this. She stated, “Is this something that was caused by her birth?
You know, I didn’t know but I wondered. It’s kind of like a hole, you know...in her
history.”
Louise described the first year home as a difficult transition. Brittney had a
significant speech delay and displayed numerous behavior problems. Brittney was
described as “really difficult” and strong willed. Louise shared, “She kind of lost her
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speech, if you ask me. She was making baby noises when we brought her home from
Russia. But within a month, she stopped making any noises. It took awhile for her to
make those baby noises again.” Brittney also had trouble with acting out behaviors and
sensory integration. Louise reported that her daughter was easily distracted and this
problem never has resolved, creating problems for Brittney in school to this day. Louise
stated, “If she gets very excited, and this is one of the behavioral problems, she would
basically have a temper tantrum if you tried to stop her. This was a behavioral issue
from the start.” When I asked Louise if she was able to get help for her daughter, she
voiced that she had turned to a social worker at her adoption agency, who met with her
three times to provide guidance. When questioned about whether this advice was
helpful, Louise gave a nervous laugh and stated, “Yeah, for a little while. In hindsight,
she needed more. I needed someone to say to me ‘this child needs more.’ And what is
upsetting is I could have gotten that help when I look back from the county.”
I asked Louise if she had been able to obtain guidance from health care
providers on Brittney’s developmental and behavioral issues. She explained that the
primary provided ignored her daughter’s speech delay, insisting that Brittney would
“catch-up.” By the time Brittney began to receive speech therapy, she was four years
old. At that time, Louise finally contacted the public school system and had her child
tested. Expressing frustration with the primary provider, Louise said, “If the health care
provider had been more informed about international adoptions, coming from another
country, that intervention (speech) should have been earlier.” Like Connie, Louise
seemed frustrated with the amount of time that was lost before care was received. She
described that her daughter was seen as any other American child, viewed as “a regular
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14 month old child, no different (than other children).” The health care providers failed
to see that international adoptees “have been traumatized. No matter how you say it, it
is not normal to not be with your parents, your birth parents.”
When asked what she thought health care providers should know about adoptive
family needs during the early months home, Louise suggested that health care providers
need additional education about the needs of children coming from institutionalized
settings. She expressed that providers do not have to “know it all” but be aware of
available resources and direct parents to these resources. Other than three information
sessions provided post adoption by her adoption agency, Louise reported having no
specific support system to cope with her child’s developmental and behavioral
challenges. She summed up her feelings with the statement, “we (adoptive families) got
suggestions and ideas (during those three sessions) and then you were on your own.”
When the interview was complete and the recorder was off, Louise shared that
she knew her daughter probably needed additional services but that having a family
member as her provider made this difficult for her. She did not want to “upset” him. She
expressed that her child had a difficult time adjusting that first year. She also mentioned
that her daughter eventually had seen a psychologist for help. I asked Louise if I could
document these statements and she consented. Louise gave me the email address of a
friend of hers who had adopted from Russia around the same time. That friend was
Beth.
Beth
Beth is a 54-year-old woman who earned a Masters degree in business
administration. She is a single mother and Katie, who is eight years old, is her only
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child. Katie was adopted from Russia and arrived home at eight months of age. Beth,
who resides in New York, requested that we speak during the day while her daughter
was in school because “she didn’t want her daughter to hear her talking about the
adoption because there are things she doesn’t know yet.”
When asked about her daughter’s health status on arrival to the United States,
Beth stated that Katie “actually had very good health” although she also stated that “she
looked gray, she looked very gaunt and gray.” Beth went on to describe that Katie was 8
months old and weighed only 12 pounds at arrival, had head lag, could not sit
independently, and suffered from chronic respiratory congestion. Throughout the
interview, Beth continued to bring up her daughter’s small stature and stated that “she is
still small and thin and for all I know it’s just what her genetics are.” As the interview
progressed, Beth kept returning to her daughter’s weight and the unknown source of her
small stature. She explained that she believed her daughter’s malnourished condition
likely was the result of orphanage care and questioned if her child had received care
different from the other children.
Some of them (other adopted children) were pretty hefty, you know. They were
big kids. One in particular, I mean she was a big kid, and she probably had the
same amount of food (as Katie), I can’t imagine she didn’t have, that she had
more food and my child had less, I don’t know.
When questioned about her first trip to a health care provider in the United
States, Beth answered, “It wasn’t all that informative.” She described that Katie was
weighed and found to be “under” the growth charts. She was instructed to feed the child
“thick shakes and ice cream” to promote weight gain. Beth considered this poor advice
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and felt her child would grow better if she avoided “junk foods” and so she fed her a
diet rich in fruits and vegetables. Beth reported that Katie “reached the bottom of the
charts” at about the age of three years. Beth described that her child was re-vaccinated
although she expressed frustration at not knowing why this was necessary. During the
first visit, she also received a referral to physical therapy to have Katie’s developmental
delays evaluated.
Beth described a positive experience with the physical therapy team that came to
her home. One of the providers was Russian speaking and Beth seemed surprised that
Katie “did understand some of it (the Russian speech).” With what Beth described as an
“aggressive” physical therapy schedule, Katie was physically and developmentally on
target by 15 months of age. Her only disappointment was that her primary care provider
never seemed to ask how the therapy was going and if Katie was improving. Beth
reports simply being asked to respond to “check boxes on the medical forms” that
monitored her development but “it wasn’t like the pediatrician ever said ‘Oh, the
physical therapy is doing well! Look at her, she is standing up now, her legs seem a lot
stronger.’ Never really did that. It was more ‘what shots is she due for and OK,
goodbye.’” Beth felt her daughter’s developmental delays likely were due to the care
she received at the orphanage. She did not view her child’s care as neglectful but rather
just a product of the situation, stating “I thought she was well taken care of there in
Russia but I thought of it more as they didn’t have time to bounce each child up and
down and strengthen their legs versus let’s say it being neglect or something.”
Beth denied that her child had any emotional or behavioral problems after her
adoption. She expressed though that the lack of history made caring for Katie difficult
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sometimes. She offered the example that her daughter had to be re-vaccinated because
the providers were not sure they could “trust” the foreign paperwork. Overall, Beth felt
her child was treated no differently than biological children. She discussed that she
originally had contacted an international adoption specialty physician to review her
daughter’s records before the adoption and reported that that had been a very positive
experience. She reflected that perhaps she should have found an adoption specialist for
Katie after they were home because “when I spoke to those doctors they were very
knowledgeable about things and my pediatrician wasn’t.” Beth went on to say that
international adoptees are different and it would be helpful for providers to tell parents
“something that is specific to adopted children.”
Beth’s interview ended and the recorder was turned off. Like the previous
interviews, Beth immediately began to talk to me as “another adoptive mother.” She
shared concerns, asked questions, and voiced opinions about her experience but she
requested I not share these things specifically. I hung up the telephone and wondered
how a mother can describe a severely malnourished, developmentally delayed child as
“healthy.”
Monica
Monica came to the study as a “snowball” participant from Connie’s online
support group. Her interview took place late one evening. Monica is a 41 year old,
devoutly Christian woman who holds a Bachelors degree. Before her adopted Chinese
daughter arrived, Monica worked for her church as a ministry assistant but now is a
“stay at home” mother. Monica and her husband have four biological children, ranging
from 8 to 15 years of age. Their adopted daughter, Paige, is 26 months old and arrived
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to the United States at the age of 14 months. The family resides in Pennsylvania. Early
in the interview, Monica revealed that they had gotten “specialty care” for their adopted
daughter. Monica’s husband, Ryan, worked for a pediatric health care network in a
large city in Pennsylvania, and the network included an international adoption clinic
(IAC).
Monica stated that Paige was “probably one of the healthiest kids that we have
in our network of adoptive friends and stuff. She was probably one of the healthiest
we’ve seen come home from China.” Despite the assertion of health, Monica went on to
describe a 14-month-old toddler who was unable to roll over, unable to crawl or walk,
and had been born with unilateral hearing loss. She also added that there were many
“sleepless nights until she adjusted to being in our home.” Paige also struggled with
“hyper-attachment” problems and appeared uncomfortable around females.
Monica reported very positive experiences with her health care providers.
Before Paige’s adoption, they consulted with the IAC regarding her medical records in
an attempt to determine her health status. Monica considered these physicians to be
experts and voiced how she appreciated that they could “not just read the medical
diagnoses that were listed but she was able to tell us in her experience what those words
meant.” Monica and her husband were aware that their daughter had a birth defect, a
unilateral hearing loss, and were able to make plans for handling her condition before
Paige arrived in the United States.
Their first visit to the IAC occurred three weeks after their arrival home. They
were met both by a physician and an occupational therapist. While the occupational
therapist played with Paige on the floor and assessed her, the physician asked them
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detailed questions about their travel experience to China, about their “bonding
experience,” and specifically asked if they had any concerns. The IAC physician
ordered lab work as well as vaccine titers on Paige. The IAC also referred the family to
an audiologist, sent records to the primary care pediatrician (who also was in the same
hospital network), and made them aware of services, such as Women, Infants, and
Children (WIC), that were available to children with birth defects. Monica expressed
that her primary care provider also was well versed in care of international adoptees and
felt very comfortable with his skills. Of special note, Monica shared that she felt that the
IAC actually helped create a bond between her and her daughter. She stated that when
Paige had to have her blood drawn, the nurses came to Monica and said “you probably
don’t want to be the ones to hold her while we are doing this (drawing the blood)
because your attachment is so new.” She went on to describe how it took four nurses to
hold Paige down while she screamed and fought. Monica and her husband waited in
another room but could hear her cries.
They brought her back out to us and as hard as it was there was this strange
dynamic that happened in that she reached for me and for Ryan in a way that she
hadn’t reached for us in the three weeks previous and I remember like, she knew
I was Mommy. And it was such a touching poignant moment...She just knew that
(I) was Mommy and that was not an experience I expected to come out of that.
Monica went on to say that she was so thankful for this experience that when they
returned to the IAC at a later date, she “stopped in the lab and I thanked them for
handling it that way because of the impact it had on our bonding experience.”
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Monica went on to discuss how her adopted daughter “struggled sometimes with
attachment issues.” She spoke of how Paige would get upset if Monica left the house to
run an errand or if someone else put her to bed. She noted that if they deviated from the
child’s usual schedule “it would lock her more than other times.” Paige would respond
to her mother’s absence with extreme clinginess upon her return. This was described as
“the stress of Mommy going somewhere else without her pushed her over the edge and
that manifests itself in a kind of panicky cry, you know, you can feel her little heart
racing and she gets like bionic fingers around my arms and legs.” Paige also preferred
men to women.
Monica and Ryan responded to their daughter’s behavior by following the IAC’s
advice to “shrink her world.” “We basically shrunk her world the first year home. We
purposely and intentionally shrunk her world as much as possible, kept our social life to
a bare minimum.” Later in the conversation, Monica came back to this event. Although
she emphasized that if she ever “adopted again, I will shrink our world like that for
about a year again,” she acknowledged that shrinking the family’s world that year cut
her off from social support and resources.
I think I spent a lot of time those first two or three months trying to figure out
why bringing home this baby felt so different when I had done it four times
before. I mean I know the circumstances are different but the adoption versus
biological etc, but I think I would have benefited from someone saying treat this
a little more like a biological birth. Let people bring you meals. Let people pick
up your groceries.
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Monica emphasized that Paige had a very strong personality and will and that the
transition to becoming a family was a long process. She shared that the “adjustment to
that personality has been far longer than just the first year that we ‘took off.’”
When the interview was completed, Monica spoke of her church and of wanting
to adopt again. I got the impression that she viewed her adoption of Paige as a very
Christian-like thing to do. After hanging up the telephone, I reflected back to the Holt’s
belief that adoption was a Christian duty.
Carol
Carol was referred to the study through a local colleague who is a nurse
practitioner. Carol, a resident of South Florida, is a 47 year old, white female who is a
high school graduate. She currently is employed in an administrative role. She and her
husband adopted their first child, a boy named Cody, from China. Cody was 15 months
old at arrival and has been home for 3 years. Their adoption of Cody was considered “a
special needs adoption” because Cody was born with a cleft palate. Before Cody’s
placement in their home, the couple was able to arrange for his cleft palate repair in a
specialty hospital in another state.
When questioned about Cody’s health status upon arrival to the United States,
Carol responded, “I wouldn’t say it was poor, but it wasn’t great.” Cody arrived home
with a skin infection and bilateral ear infections, but already was on antibiotics. When
asked what it was like to care for Cody during this time, Carol reported, “It was
frustrating. I was happy to have him home but I was still recovering from the twelve
hour time difference and it was frustrating because I didn’t know and he didn’t
understand.” When questioned about what this statement meant, she explained that not
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only could Cody not hear well due to the ear infections but also he was unable to
understand English. She reported that during these early days “nobody was sleeping
because Cody was afraid to be in his room alone.”
When asked about her first visit to her health care provider, her voice literally
sounded happy and she exclaimed, “That was the best day.” She went on to explain that
her pediatrician had a lot of experience with international adoptees and he instructed
them to simply let their new son cry himself to sleep. His rationale was that “he (Cody)
had to learn to soothe himself and because he put himself to sleep in the orphanage and
soothed himself he could do that here, but if we ran in there every time he was crying
we were never going to get any sleep.” Carol reported that they did as instructed and
Cody cried himself to sleep that night and never cried at night thereafter. Carol also
stated that Cody’s pediatrician “did a whole line of blood work, just to check for
everything” but reported that neither vaccine titers nor re-vaccination was completed.
The specialty care Cody received to repair his cleft palate occurred two months
after his arrival to the United States. He also had bilateral myringotomy tubes placed.
Carol labeled this experience as “fantastic, within 24 hours of having his palate closed
he was running around the pediatric recovery room.” The only issue that Cody did
develop after surgery was that “he could no longer speak. He wouldn’t, it wasn’t that he
couldn’t, he just wouldn’t. So we started speech therapy in February (four months after
the surgery.)” After a year of speech therapy, Carol reported Cody was developmentally
on target.
Carol denied that Cody ever had any emotional or behavioral problems,
something she explained was due to his previous experiences. She pointed out “by the
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time we got him home, we were like his fourth family. So I think he is real easy going.
He’s very outgoing with people.” While she stated that Cody did not have emotional
problems, she did return to describing how difficult the initial transition home was. She
said, “It was tough and plus everybody was just, all three of us were exhausted and
frustrated because we couldn’t communicate with each other. It was hard, it was really
hard.”
When asked what she thought health care providers should know about those
early months home, she stated that parents need emotional support. Health care
providers should know “that the parents as much as they read and they follow up, they
are not as equipped as they think they are to handle the situation and they are still
getting over the process of the fact that their child is actually physically in their arms.”
She went on to point out that most international adoptees are over one year old and this
makes the transition difficult.
That when you adopt a child I think it takes longer for it (your innate mom
sense) to kick in because you are still learning about each other...especially if the
child is older, if you don’t get the child as an infant. Cody was 15 months old
when I adopted him. He had a personality, he had his moods and the way he
liked to do things and the way he had learned things. So I was trying to fit into
his world as much as he was trying to fit into mine.
Once the interview was complete and I had thanked Carol for her participation,
we continued to talk. She shared with me that she believed that she was lucky because
China is a country that provides “more accurate” medical records for the adopted
children. She expressed a desire to adopt again but felt that financially this would be
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impossible. As the conversation ended, I was left wondering what those first few
months had been like for little Cody. Imagine changing all that you know, having 4
families in14 months, arriving to your new home ill, requiring major surgery, and then
completing a year of follow-up speech therapy.
Sandra
Sandra, a 35 year old white woman, is an acquaintance of an adoptive parent
friend of mine whom I had met a few years back when adopting my son. She lives in
South Florida and had “met” my friend in an online support forum for adoptive
families. Sandra is a pediatric nurse who holds a Bachelors degree. She and her
husband, Bill, adopted their daughter, Amanda, from Guatemala at the age of nine
months. Amanda is now four years old. Amanda was placed as a few day old infant in a
foster care situation in Guatemala and had one consistent foster mother during her time
there.
I started the interview by asking her to describe Amanda’s health on arrival to
the United States. Her reply was “well, she was generally healthy.” Sandra went on to
explain that Amanda was of normal height and weight, had some issues with
constipation, and had minor physical developmental delays initially. She also reported
that Amanda had “emotional issues.” Amanda was described as “clingy” and had
significant sleep disturbances. Sandra stated, “She had sleep issues. She didn’t sleep
through the night for a long, long time. I think it was a year before she actually slept
through the night.”
When asked about the first visit to the health care provider, Sandra stated that
she felt comfortable because she sought care from a physician colleague whom she
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worked with at her hospital. Although Sandra felt that her physician did not have “an
actual protocol (for care) for adopted kids” and so he “just kind of winged it,” she
reported that her doctor scrutinized the foreign medical records and re-vaccinated
Amanda. He also did a complete and thorough physical exam. Amanda had blood work
completed, including a HIV screening. Amanda’s constipation problem was treated with
a laxative. Amanda quickly overcame her developmental delays and was sitting up on
her own about one month after arrival.
Since Amanda seemed to have minimal physical problems, I returned to
prompting Sandra about Amanda’s emotional issues and how she obtained care for her.
Sandra explained that Amanda arrived to the United States “grieving.”
She did have emotional issues when she came home but, no, she was not treated
for any of that. I don’t even think I really talked to the pediatrician about it. I
don’t know if I necessarily felt comfortable about that because I didn’t really
know what was going on myself but when she came home she was definitely
grieving...(at night). She would cry and cry and cry and I couldn’t comfort her.
No matter what I did she cried, screamed, and carried on.
Later in the conversation, Sandra did report that she told her pediatrician about the
sleeping problem. The pediatrician instructed her to allow Amanda to “cry it out.”
While Sandra reported that her pediatrician did an exemplary job of providing her with
anticipatory guidance for typical pediatric concerns such as the use of car seats, he
failed to see Amanda as “different” than biological children. She shared, “He was
treating her whole sleep issue and all of that as a regular biological child, that wasn’t
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gone from me for eight months.” When questioned about what she meant, Sandra
explained that one night when she tried to follow his advice,
The poor thing just cried and cried and cried, never went to sleep. I went in there
(to the bedroom), she just looked devastated like I was the worst thing in the
world! What did you do to me? That whole day I felt guilty and she was, I think
she was worried. I had left her...Because that (being left) had happened to her
before, you know. Her foster mother, all of a sudden, was there and then she
wasn’t. Now she is in this new country where there are new smells, new
language, things sound different, things are weird and now she’s here and she
was with me for those few months already and I think she was worried that I
didn’t respond to her crying, now what is going on? What’s up? Is Mom ever
coming back again?
Sandra went on to explain, “I don’t think my pediatrician knows anything about
attachment really to be honest. I don’t even know how many of the doctors I have been
around really know much about attachment.” Sandra reports ignoring her pediatrician’s
advice after that night and instead spent a year rocking her child to sleep and responding
to every cry. She explained that Amanda took about one year to bond and be secure in
her new environment.
I prompted Sandra to tell me what she thought health care providers should
know about adoptive family needs during the early months at home. She emphasized
that adopted children are different from biological children. She described that
biological children have had a secure base and with adopted children “bonding is a lot
different.” When asked why she felt bonding was different, she responded:
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She would have been fine left in Guatemala with her foster mother. I am sure
she would have adjusted just fine but once I take her out of what her familiar
environment is, you know, she’s a basket case you know. She’s stressed, she’s
you know worried, she’s – that her needs aren’t going to be met and all of that.
So I think it’s just that’s how they are different, they’re not with the same care
provider all of the time you know so they are being pulled out of a familiar
environment, you know. So that is it’s hard, just like it would be hard for me to
be pulled out of my safe environment.
When the interview was complete and the recorder turned off, Sandra and I
talked about our children. After completing this interview, I was definitely beginning to
see patterns in what the adoptive mothers were sharing. Since it appeared that the
adopted children’s behavioral issues seemed to overshadow their physical challenges, in
subsequent interviews I explored these concerns in greater detail. I also found that a
simple prompt, “Is there anything else you would like to share?” asked at the end of the
interview often resulted in mothers suddenly recalling additional information.
Betsy
Betsy was the seventh international adoptive mother I interviewed. I obtained
her name and email address from a local nurse practitioner. Betsy, a resident of Florida,
is a 35-year-old mother. Betsy completed “some college” and currently works as a
records keeper. She and her husband adopted their daughter, Cassie, from China at nine
months of age. They have no other children in the household and they have been an
adoptive family for two years.
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In response to the first interview question, Betsy reported that her daughter’s
health status on arrival to the United States was “pretty good.” Betsy did acknowledge,
however, that Cassie was significantly underweight on arrival. She weighed only 14
pounds. She also went on to describe significant problems with sleep. She expressed
that her real concern those first weeks was:
The only problem I was having was that when I was calling around for doctors
that they were saying they only were accepting newborns, like they weren’t
taking new patients and plus I started to explain well, she is a newborn to me,
even though she is nine months because she is coming all the way from China.
When I asked Betsy to describe her first visit to the primary care provider after
the adoption, she expressed that although she felt nervous because she was “an older
first time mother,” she had felt very comfortable with the pediatrician. This comfort, she
explained, was primarily because she discovered that the pediatrician was himself an
international adoptive parent. Betsy reported that her child’s foreign vaccine records
were accepted and that she was not re-vaccinated. She explained that blood work was
obtained and that she was instructed to feed Cassie “just about anything” to encourage
growth. Cassie had follow up visits every two weeks for the first few months to monitor
her weight gain. Betsy reported that Cassie “really had an appetite” and quickly gained
weight.
Betsy expressed that the biggest challenge they encountered with Cassie was
sleep disturbances. She reported that while Cassie would sleep, she refused to sleep
alone in her own room. Any attempt to have Cassie sleep in her own crib resulted in
prolonged screaming episodes. Betsy asked her pediatrician how to handle this issue.
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He explained that this was “probably normal” because the child had been used to
sleeping with other children, and encouraged Betsy and her husband to “basically throw
a mattress in there, a sleeping bag or something and just take turns.” So Betsy and her
husband spent five months, which Betsy stated “seemed like years,” sleeping on the
floor next to Cassie’s crib, holding her hand through the crib rail. Eventually, the crying
stopped. Besides the nighttime behavioral issues, Cassie also initially displayed “shy”
behavior to strangers. Betsy reported that Cassie would cry and “want to be with us”
when exposed to others. Betsy reported that when a large crowd of extended family met
them at the airport to welcome them home from China, the “shock” of this upset Cassie.
With time, these issues were resolved as well.
When asked what she would want health care providers to know about adoptive
family needs during the early months at home, Betsy stated that providers should be
educated on the specific needs of “these kids.” She discussed that brand new adoptive
parents, who have no other children, really need support because “adopting is a little bit
different.” Her belief was that the more health care providers knew about the unique
needs of international adoptees, the “better off they can help the parents.”
As our conversation came to an end, Betsy shared that some of the other
international adoptive mothers she knew had children who had significant
developmental delays. She reported that these children came home older than one year
of age and she shared that she believed Cassie had avoided these issues by coming
home earlier. By this point, it was becoming clear that the behavioral and emotional
challenges international adoptees had were the most difficult situations the new families
had faced. The next interview continued to support that thought.
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Sharon
I received Sharon’s telephone number from yet another local nurse practitioner.
She initially asked to be interviewed in person, since she resides in Florida, but then her
husband became ill and she decided a telephone conversation would be more
convenient. Sharon is a 52-year-old woman with a Bachelors degree in business and
marketing. She is currently self-employed. Sharon and her husband adopted their
daughter, Emily, from China at the age of 13 months. They have been an adoptive
family for nearly four years.
When asked about Emily’s health status upon arrival to the United States,
Sharon shared that “she appeared to be in excellent health.” Later she repeated that her
daughter “appeared to be in perfect physical health.” Emily, though, did arrive with
mild developmental delays. She was unable to stand or crawl. Sharon reported that they
actually took photographs of her Mongolian spots “to take back to the States because
we were afraid that the doctors here would think it was child abuse.” Early in the
interview Sharon did acknowledge that although Emily had only mild physical delays,
she had significant “emotional issues.”
I asked Sharon to share her first experience obtaining health care for her child in
the United States. She explained that it was quite a difficult experience because Emily
was “screaming bloody murder...a screaming, loud tantrum the entire time, could not
console her.” Sharon went on to explain that she had specifically chosen an Asian
doctor for her newly adopted daughter. She believed this would put her daughter at ease
and that this doctor would be more attuned to the cultural needs of her daughter. Sharon
explained further that each time they visited the doctor, Emily responded with the same
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screaming tantrum. One day, the doctor was out and Emily was seen by the nurse
practitioner who was not of Asian descent. Emily did not cry. Sharon said, “When she
didn’t have the fit, that’s when I started to think it was the doctor. I really think it was
because she was Asian.” When questioned about why she thought her child responded
this way, Sharon suggested that her daughter possibly had a “horrible medical
experience (while in China) that we don’t know about.” But Emily’s reaction to people
of Asian descent occurred outside of the doctor’s office as well.
We had another incident where, she loved elevators, loved them and we were
going on a trip up to Boston and we had to go into an elevator at the airport.
Well, when the elevator doors opened, an Asian family came rushing out and
she went into a tizzy. We couldn’t get her in the elevator and the whole trip
when we were up in Boston, every time we went to an elevator she would just
freak out and panic. Up until that point, she had never had a problem with an
elevator and I, I might be over thinking it but I think it was, she seemed to react
whenever she would see Asian people.
Emily’s pediatrician acknowledged that the behavior was concerning but “did not
suggest anything, didn’t treat her in any way.” When asked why she thought her
daughter responded this way, Sharon sighed and again stated that she felt her daughter
had experienced some kind of physical trauma while in China. She described the
conditions of the orphanage as “sub, sub human.”
Emily also resisted sleeping. As Sharon explained:
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She had big issues going to sleep and that was apparent from when we were still
in China too. We actually have a photograph of her. She just didn’t want to go
to sleep. I’d put her down in the crib for a nap and she just kept crying and
crying and screaming and screaming and she wouldn’t go to sleep and she stood
up at the edge of the crib and fell asleep standing up and we actually have a
photograph of it and it is the sweetest thing but she wouldn’t lay down and go to
sleep, but she stood up at the side of the crib and she slept standing up for
probably 20 minutes.
Sharon reported that for the first six months in the United States, “it was a two hour
process to get her to bed at night.” Daytime naps were similar. Sharon described this
experience “as always a challenge for the first six months. It was screaming bloody
murder tantrums. Just screaming, screaming, screaming and the only thing you could
do was hold her and rock her until she just exhausted herself.” One night when Sharon
left Emily to “cry it out,” the child had such a significant tantrum that she lacerated her
face with a toy kitchen pot. This laceration required a trip to the Emergency room and
twelve sutures. Sharon stated this visit was “traumatic.” Her memory of this event is
shared below.
The doctor had to stitch her three times because the stitches kept breaking and
he had a horrible bedside manner and he was actually chastising her for
screaming and wiggling because they had to put her in a papoose. I mean he
was actually yelling at my child while he is trying to stitch her up. That was a
very unpleasant experience.
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Sharon received no specific guidance from her health care providers on this issue. Once
the attempt to “cry it out” failed, Sharon decided to just “suffer through it” and rocked
Emily to sleep each night with lullaby music. After six months, the problem slowly
resolved.
I asked Sharon to tell me what she thought health care providers should know
about adoptive family needs during the early months at home. She shared that health
care providers need to show empathy, sensitivity, and special care to international
adoptees. She described that the early time after the adoption is an “adjustment.”
I think there should be more sensitivity to, like when Emily was going to the
doctor and screaming and screaming, everybody just seemed to be aggravated
you know, the Emergency room, even the doctor. Instead of realizing that we
needed to be possibly be a little bit more sensitive to her.
Sharon went so far as to buy a “doctor kit” for Emily to play doctor. She stated, “I just
worked at trying to prepare her for doctor visits…You know I prepared her for two or
three days in advance for every visit.”
As the interview came to a close, I thanked Sharon for participating. I was struck
by how forthright she had been in describing what had been a difficult time in her and
her adopted daughter’s lives. I was incredibly grateful that she was willing to share her
story with a health care provider.
Joyce
Joyce was a snowball participant recruited by Monica. The two mothers had met
in an online support forum for adoptive parents. Joyce, a 36-year-old woman, resides on
the West coast of Florida but originally lived in the state of Georgia after the adoption.
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Joyce and her husband adopted their daughter, Hannah, from China at the age of 10
months old. Hannah was raised by foster parents while in China. Hannah is currently
five years old. The couple is also parents of a two-year-old biological son.
The question about her daughter’s health status on arrival prompted her to state,
“She was fairly healthy but very malnourished.” Joyce reported that her 10-month-old
daughter weighed only 10 pounds! During the first year home, Hannah became ill with
“the mumps” and experienced a significant speech delay. By her second birthday,
Hannah only spoke four words. The child also eventually developed chronic sinusitis,
requiring her to see numerous specialists. Joyce also reported that Hannah displayed
significant stranger anxiety that began about 12 months after arrival.
After the adoption, Joyce shared that her first visit with Hannah to the
pediatrician was “just like a regular check up, like a brand new baby.” Joyce found the
visit to be informative. She had “picked” her provider before they traveled to China to
pick up Hannah because the provider had experience in dealing with internationally
adopted children. The first visit included blood work, including a HIV screen and
vaccine titers. Hannah was re-vaccinated. Joyce was given specific instructions to
increase Hannah’s formula intake to promote growth.
Joyce reported that her pediatrician seemed unconcerned about Hannah’s speech
delay; the pediatrician felt that since Hannah’s speech comprehension was on target,
delayed speech articulation in a child who had “heard Chinese for a year was normal.”
However, Joyce insisted on testing and at that point, Hannah was evaluated by a speech
pathologist. Hannah’s speech delay required significant speech therapy and at her
current age of five, she still is receiving speech therapy services in kindergarten.
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Joyce reported that Hannah had no issues with sleep. She did share that
Hannah’s Chinese foster family had her on a specific schedule and so Joyce “followed it
to a T” once back in the United States. Hannah did seem to be “all freaked out” when
they initially arrived in Georgia but she then seemed fine until about 12 months later. At
that time Hannah began to display symptoms of stranger anxiety. When she asked her
pediatrician about this, she was told this was normal for Hannah.
She said that yes it is abnormal for like an almost two year old to be going
through it (stranger anxiety) but that (other) babies go through it at a year. They
start about between nine months and a year and we had been home about a year
and so I thought it was late for her age, it was normal for her being with us for
that time period.
Joyce and her husband dealt with the anxiety by staying in close proximity to their
daughter at all times. Joyce reported that Hannah then “Just got over it. Like once she
realized we would come back because she was just afraid we weren’t coming back.”
When asked what she would want health care providers to know about the early
months home, Joyce sighed and then laughed. She expressed frustration with how
difficult it was to be a brand new parent. However, since her child wasn’t a newborn,
the providers seemed to forget that they were new parents:
We’d never been parents before so even though Hannah was 10 months old they
think, a lot of the nurses and doctors think, we were already parents (for 10
months). Well, we you know, we weren’t. We didn’t know what we were
doing. She was a newborn baby as far as we were concerned. So a lot of times
they would talk to us like we had been parents for 10 months or a year and we
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hadn’t. So that was one thing we wish they had been a little bit more
understanding (about).
After this interview, I pondered for a bit how difficult it must be to be the instant
parents of a toddler or older infant. I began to think of how we could make this
experience smoother for international adoptive parents. Data saturation was achieved
with the completion of this interview. The remaining three interviews were completed
to confirm the prior findings and the completeness of the data.
Terri
Terri was another participant recruited into the study by Connie. Connie and
Terri had met because they both used the same adoption agency. Terri is a 40-year-old
married mother of Kayla, her four-year-old adopted Chinese daughter, and a one-yearold biological son. Kayla was 10 months old when she arrived to the United States. She
initially was raised in an orphanage.
Terri told me that Kayla was “very healthy, as healthy as could be when we got
her.” Despite her initial health, Terri went on to describe how Kayla was born with teeth
that did not have enamel. As her baby teeth grew in, Terri could see tiny holes all over
her teeth. As this put Kayla at high risk for significant cavities, she was taken to the
hospital, anesthetized, and had all her teeth sealed. While the enamel problem was
discovered about a year after arrival, the treatment did not take place until Kayla was
over two years of age. Terri reported that there is no way of knowing if this will happen
with her permanent teeth as well. She stated that she has no way of knowing if this
problem was caused by the birth mother “not taking care of herself while she was
pregnant.” Approximately 60 days after arrival, Kayla also experienced a case of “hand,
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foot, and mouth disease” that was severe enough to warrant intravenous therapy for
dehydration.
When asked about the first visit to the health care provider, Terri reported that
her agency had provided information about an international adoption specialist in a
nearby city. She stated that although she had this information, she chose to take Kayla
to the local pediatrician. She shared that “I just took her to the pediatrician I was going
to use, the local one, and just did the regular weight and height and just the regular
stuff...They didn’t do anything special. She didn’t have any problems so I guess things
were pretty standard.” Terri reported that Kayla was re-vaccinated.
When asked further about any medical problems Kayla might have had that first
year, Terri explained that Kayla developed a rash one day. On the second day, the rash
was severe; in addition, Kayla had developed sores in her throat. So Terri took her to
the local emergency room. She explained that she was satisfied with the care they
received but reported that the providers “seemed baffled.”
They kept saying they had never seen anyone have it like this before…They
thought maybe, oh I don’t know. They were looking up online to see how
common this is in China. They were thinking this doesn’t occur over there and
so she had no immunity to it at all. So you know like children here just might
get it a little bit but I don’t know...There were like four doctors who kept coming
in and out and they were looking things up on the Internet. You know, things
that were China related.
I asked Terri if Kayla had had any emotional problems during the first year. She
responded that Kayla had “very bad sleep problems” that started from the time of arrival
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home and continued for approximately three years. She reported that the sleep problems
had resolved themselves only six months previous to our interview! She stated that
Kayla’s sleep problems were “night terrors” and she provided the following description.
They would last all night. There were several times that we just put her in the
car and just took her for a ride and that would calm her down some. But she
would just wake up screaming and she would be looking at me but it was like
she couldn’t see me like she didn’t even know I was there. Then she would sleep
for 5 or 10 minutes and then she would scream for 5 or 10 minutes like for hours
all night long. And this went on maybe three or four times per week.
When I asked if she asked her pediatrician for guidance on this issue, Terri reported that
she had never mentioned it but she did seek advice from a fellow adoptive mother. She
Terri explained that she didn’t know that this behavior was unusual. She stated, “She’s
my first child. And I don’t know, I guess I thought all kids cry all night long. I just
thought this was part of being a mom, you know, kids cry all night long.”
When I asked Terri what she would want health care providers to know about
adoptive family needs during the early months home, she expressed that she would want
providers to know about the sleep disturbances. She shared that it would have been
helpful to have “someone who could or would be better able to tell me what to do or
how to handle it. I didn’t know what to do. I just kind of let her scream it out.” Terri
finished up her interview by highlighting that Kayla’s adoption never had caused them
any problems with getting medical treatment. She was happy to report, “she’s been
treated just like any other child.”
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That final statement followed me to bed that night. I wondered if it had been a
good thing that Kayla had not been seen as “different.” Perhaps being seen as different
might have resulted in Terri getting anticipatory guidance from her health care
providers about the common occurrence of sleep disorders in internationally adopted
children. Perhaps providers could have educated her about how these children grieve
losses.
Sonia
This participant was referred to the study by a local nurse practitioner who knew
her personally. Sonia, a 33-year-old married woman, is a high school teacher who holds
a Masters degree in education. Sonia and her husband live in New York. They had
become an adoptive family 2 years before when they brought home their son, Jose, from
Guatemala at the age of 12 months. Sonia reported that the “pick up trip” occurred the
week of Jose’s first birthday. Until his adoption, Jose was raised in foster care, as are
most Guatemalan adoptees. Although Jose is currently an only child, the family now is
in the process of adopting a sibling from Korea for Jose.
Sonia was asked to describe her son’s health upon arrival to the United States.
She responded “he was seemingly healthy but we did find out he had TB
(tuberculosis).” When asked to define what “seemingly healthy” meant to her, Sonia
explained that Jose was a plump, playful, active boy and “was like a regular one year
old.” Other than the latent TB, Jose had no major medical problems or developmental
delays. Sonia reported that Jose did experience “problems with attachment.”
While Sonia and her husband were in the process of adopting Jose, their
adoption agency conducted a series of workshops. One of the workshops was about the
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health care needs of international adoptees. The guest speaker for this event was an
expert immunologist from a large teaching hospital in New York. Sonia hired this
doctor to track her son’s medical records from Guatemala during the adoption process;
he also was the first doctor that Jose saw on arrival to the United States. Sonia
expressed that the visit to the specialist was a very positive one. The physician did
extensive testing of Jose, including stool samples and blood work. Sonia could not
recall if vaccine titers were completed or if Jose had been re-vaccinated. The specialist
is the one who diagnosed and treated Jose for TB. Sonia summed up her experience
with this doctor with these words: “I was lucky. I had a doctor that understood the
process and what I was going through. He knew these kids. It killed me that he couldn’t
be my primary provider.” Because the specialist was not a pediatrician, Sonia needed to
find one for Jose.
Sonia reported that she called the local pediatrician used by her friends and
neighbors. She asked if she could have an interview with the pediatrician.
You know how sometimes they give pregnant women interviews so you can get
in there and find out about the practice and that kind of stuff. But they didn’t do
that. They said, you know, you already have a child and so we didn’t get to go to
those meetings.
When asked to tell the story of the first visit to this practice, Sonia went on to describe
how frustrated she was with filling out the background paperwork for Jose. The
adoption agency had given very limited medical information about Jose to the couple.
Sonia basically knew his birth weight and length and little else. She asked the
receptionist for help.
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Because I couldn’t answer the questions, they told me to just put ‘adopted’ in
big letters across the top (of the form.) So that was a little awkward. It made me
feel stupid. Like I didn’t know these basic things about my child, I didn’t know
this. I should know this but at the same time I don’t know this and I have no way
to know this. We do have contact with the foster mother but we have no contact
with the birth mother. So we had no knowledge besides his weight and length
and head circumference. Then we went for the physical….it was just…it was
very uncomfortable, like sometimes I felt they were talking down to me.
Sonia went on to discuss that the pediatrician actually seemed displeased that she had
taken Jose to see a specialist and informed her that the primary care office could handle
his care.
I think he thought that by seeing a specialist I wasn’t trusting his opinion. I
wanted the best person to care for Jose. One who knew exactly what to look for,
I mean Dr. Smith is an adoption specialist, who else would be better? There is
nobody better in my mind.
Throughout the interview, Sonia touched on how frustrating it was to not have a
medical history on her son. She described this loss as “pieces missing in his puzzle.”
She explained that she felt different than the other mothers at the pediatrician’s office.
She felt that writing ‘adopted’ on her son’s medical form was a label. Sonia shared that
this made her feel different and singled out. But Sonia did acknowledge that she was
different:
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You don’t want to feel that you are different. You have a child and you love that
child and you want to make sure that your child will get the best that they need,
just like any other parent. But at the same time, you don’t know everything
about your child.
Interestingly, Sonia reported that one of the benefits of seeing the specialist was that
she did not feel different there. She shared how another adoptive mother in the waiting
room also had a son diagnosed with TB. “And you know, just being able to talk to her
and know someone in the waiting room had the same thing. You know it wasn’t just my
child with this problem. Her kid had the same thing.”
I asked Sonia if Jose had any emotional or mental health problems that first
year. Sonia told me that Jose’s foster family had him on a regimented schedule in
Guatemala. When Sonia and her husband brought Jose to the United States, they
continued to follow the exact schedule for the first six months and Jose thrived. After
the six-month period, Sonia reported that the family began to deviate from Jose’s
schedule and Jose developed “attachment issues.” In the first six months, Sonia
described Jose as “a very mellow kid but he wouldn’t leave me out of his eyesight.”
Jose also often sat quietly near Sonia and studied his surroundings. At the six month
mark, Jose began to become clingy and would become a “big, sobbing, crying mess”
when separated from Sonia. Their social worker told them that this behavior was normal
in adopted children. With time, the behavior resolved.
When asked what health care providers should know about adoptive family
needs during the early months home, Sonia shared:
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I think they need to realize that you already have insecurities as an adoptive
parent, like sometimes people look at you differently. I was in a store and Jose
was being a little annoying and I was getting frustrated and this woman says to
Jose ‘be nice to this lady.’ Well, this lady is his mom, you know? You always
feel like people are looking at you and trying to figure out what your situation is.
I think they don’t realize that or take it in to consideration that you are already
on eggshells while you are trying to figure out how your family dynamic is
going to work and I think that primary care people should have empathy and try
to make you feel comfortable. I think they get so caught up in the medical stuff
that they make you feel uncomfortable.
Sonia went onto explain that adoptive parents want to know that their children are
healthy and need their health care providers to help them fill in those “missing pieces.”
Adoptive parents want to “know” about their children too.
I thanked Sonia for her participation and for candidly telling her story. We
talked a bit about their upcoming adoption from Korea and she expressed sadness that
they could not adopt a sibling from Guatemala for Jose. The adoption program in
Guatemala currently is inactive. I wondered if their second adoption would be a
smoother process.
Danielle
The final participant entered the study as a “snowball” from Beth. The mothers
had met because they both lived in New York. Although Danielle had contacted me
quite early in the data collection phase, two months passed before she returned her
consent and asked to schedule her interview. When I reviewed the study and the consent
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process with her, she admitted she had needed time to think about whether she wanted
to share their story. She expressed that their adoption had been a difficult one. Danielle,
a 52-year-old married woman, had adopted her son Michael from Russia when he was
22 months old. They have been an adoptive family for four years. Michael is their only
child.
In Russian adoptions, two visit trips to the country are required. Prospective
adoptive parents travel the first time to meet their “matched” child and decide if they
want to proceed. If so, then a second trip is scheduled several weeks later to pick up the
child. In Michael’s case, his adoptive parents were well aware that he had significant
problems. They did seek out the expert advice of an international adoption specialist to
review Michael’s medical records. Danielle reported that they initially believed their
son was “autistic or retarded but they (the specialists) were saying to us he is a normal
child. We see this all the time. This is the way kids act when they don’t have human
interaction.” With this advice, Danielle and her husband decided to take a “leap of
faith” and proceeded with the adoption.
When I asked Danielle about Michael’s health status upon arrival to the United
States she said, “He looked good, like he was tiny though. He was 22 months old and he
weighed only 19 pounds.” She went on to explain that in addition to his severe
malnutrition, the child also had Kawasaki’s disease, had a heart murmur, had allergic
dermatitis with multiple lesions, was unable to chew or suck, made no auditory sounds,
had a completely flat affect, and would not make eye contact. Eventually, it also was
discovered that Michael was legally blind in one eye. Danielle and her husband
continued to believe that Michael had “autism or was mentally retarded.” Michael had
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to be fed with a bottle with large holes cut in the nipples. Danielle reported that the
saddest part was this:
He didn’t cry. When he would be upset, you would see tears roll down his face
but he wouldn’t make a single sound, you know. Later, we learned that’s like a
learned experience. Kids know how to cry when they are born. But if you make
a sound and nobody ever responds to you, you stop making the sound, so you
know it was heart wrenching.
The day after Michael’s arrival to the United States, Danielle took him to the
pediatrician. Before the adoption, she had interviewed 15 pediatricians before she found
one who not only was familiar with international adoptees but who also spoke Russian.
Danielle reports that this pediatrician gave them a standing appointment for their arrival
home. At the first visit, Michael was re-vaccinated and had blood work completed.
Danielle reported, “She gave us a blood form where she checked off every single box
on it!” Michael was referred to a pediatric cardiologist to have his heart murmur
evaluated and Danielle was given specific instructions on how to feed Michael to
promote growth. Danielle reported feeling well taken care of by her primary provider
and felt that this provider was very well versed in care of international adoptees.
When asked how the visit to the specialist went, Danielle sighed. She reported
that the office staff and nurses had been very good with her child but that the doctor
“probably could have been a little more sensitive.” When I asked her to explain further,
Danielle stated:
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The doctor was more matter of fact. You know, slap the things on his chest, like
the electrodes or whatever, and do the test, ‘lay still, don’t move’ you know, it
was difficult...Michael didn’t really speak English and didn’t understand
English. Everything was scary for him. So you can imagine being thrown into
that situation, being poked and prodded and not really understanding?
Thankfully, Michael’s heart murmur was benign.
The new adoptive parents suddenly faced additional problems when Michael
discovered solid food. Danielle and her husband had been told by the orphanage
workers that Michael would not eat and that they had to puree vegetables and add them
to his formula. But once Michael began to eat solid foods, he was unable to stop eating
and absolutely refused to drink fluids. This resulted in significant and prolonged
dehydration that affected his kidney function. Danielle reported, “running around like
lunatics from blood test to blood test” to monitor his kidney function. Michael refused
bottles or cups. Eventually, the couple realized he was willing to drink from a syringe.
It sounds crazy right? But it was like a way we could get him to drink liquids
and it was a game for him as well. We would spend hours at the table with the
syringe soaking up the milk and then injecting it into his mouth.
Equally frightening for the new parents was Michael’s binge eating.
He consumed so much food that we, as silly as it sounds, actually called the
pediatrician and said can he do damage to himself? Can he hyperextend his
stomach? Can he like rip, tear, explode his stomach? He would literally eat until
he would throw up and that lasted for quite awhile.
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Their pediatrician instructed them to allow Michael to keep eating as much as he
wanted. She explained that he eventually would learn to stop when he was full. She
encouraged them to provide only healthy food, no junk. Over the first year, Michael
slowly began to eat without gorging. Four years later, Michael is a healthy eater but he
still struggles to consume enough liquids.
Two weeks after Michael’s arrival, Danielle arranged for him to be evaluated by
an early intervention service provided by New York State. Danielle found out about this
service from other local adoptive parents, not her health care provider. Michael had
“significant, significant delays, significant.” He received therapy five days per week for
two years with early intervention. Three days per week Michael received special
education therapy and two days he received speech therapy. Once he was four years old,
the school district provided his therapy; he continued with two days each week of
special education and three days each week of speech therapy. Initially, Danielle
reported:
He wasn’t even uttering sounds at two. We would put him in the middle of the
room with tons of toys around him and he would just sit there. He didn’t know
how to play with toys, you know. So we had a lot of work to do for those first
couple of years.
At his current age of six years, Michael is developmentally on target and beginning
kindergarten this school year.
When I asked Danielle about Michael’s emotional health that first year, she
reported that Michael had been able to bond with them quickly. She did share, though,
that Michael was terrified of many things. He was afraid of the wind blowing, the dark,
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and would not enter a room alone. Danielle described Michael as overly cautious and
easily over stimulated. When over stimulated, Michael would “just shut down.” Their
adoption agency did instruct them to keep Michael’s world “small” for the first month
and they followed these instructions. Although he did not seem to have any trouble such
as having nightmares while sleeping, Michael slept frequently during his first year
home. He would take nearly 3 hour naps during the day and then sleep an additional 12
hours at night. He also had the curious habit of violently rocking himself to sleep.
Despite their best efforts, this habit persists. Danielle worries about this, stating “I don’t
want him to get made fun of at sleepovers.”
When asked what health care providers should know about adoptive family
needs during the early months home, Danielle had a strong answer.
If you (a health care provider) are not well versed in adoption issues, then let the
parents know and say ‘I may not be the best choice for you these first couple of
years that your child is here (in the United States) and these are the reasons
why.’ I think if doctors would do that it would give parents the chance to really
do their homework and find a better fit...From the pediatrician’s standpoint, if
they don’t know what the adoption issues are then they shouldn’t try to fake it.
They should just say straight up, ‘Not my forte.’
Danielle went on to explain that adoptive parents should know that they have a choice
in providers and they should look for a provider who is experienced in international
adoption medicine. She recommended that adoptive parents use the services of
international adoption specialists both before and after their children’s adoptions. With
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the support she received, Danielle explained that although the “adjustment period was
difficult, we are in the swing of normal life now and it’s awesome.”
I hung up the telephone knowing that I now faced the most difficult part of the
research journey. I had to find the meaning in my participants’ experiences and tell their
stories with accuracy and truth. Once transcribed, their words totaled 212 pages of data.
Data Analysis
The process of data analysis began with bracketing my own experience as an
international adoptive mother. Before the interviews were conducted, I expressed my
story in a narrative. During the process of data collection, I kept reflective journals that
focused on feelings and ideas. At all times, I attempted to be aware of biases and
preconceived notions about mothering a newly adopted child. Interestingly, as the
interviews progressed and the data analysis began, I had a much more difficult time
bracketing my experience of being a nurse. As participants revealed numerous health
problems, it was very difficult not to view those experiences through the eyes of a
nurse. Instead, I carefully focused on seeing those experiences through the lens of each
participant as it was lived and experienced for them.
Van Manen’s hermeneutic phenomenological method was used for data
analysis. Van Manen’s perspective on conducting phenomenological research is one of
carefully examining the studied phenomenon (the lived experience) from multiple
angles. This approach requires researchers to begin the process by examining the data
through the lenses of four existential life worlds: spatiality, corporeality, temporality
and relationality. Inherent in phenomenological philosophy is the understanding that
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people exist as “beings in the world” and this being can be contextualized and
understood by space, body, time, and relation to others (Munhall, 2007).
Spatiality can be defined as the space people feel around them (Van Manen,
1990), and includes where we are and where we have been. For instance, our place of
birth and our current home are a part of how we experience our spatiality life world.
Corporeality refers to the experience of “lived body.” This means that our experience of
life events always occurs through the physical experience of our body as well as how
we view the bodies of others. How a body appears under the gaze of another is
dependent on their perspective (Van Manen, 1990). For instance, a severely
underweight infant may appear healthy while lovingly viewed by its new adoptive
mother. Temporality is the experience of “lived time.” Temporality is experienced as
time within the context of past, present, and future. Lived time is “subjective time as
opposed to clock time or objective time” (Van Manen, 1990, p. 104). For example,
some of the mothers in this study expressed that time seemed to slow down the first
year their children were home. They expressed that the early time spent with their
children seemed to last much longer than the actual months. Many mothers had
difficulty even recalling the sequence of events during the first year. The final life
world, relationality, is our lived experience of interpersonal relationships with others.
Relationality is how one situates oneself in the world in relation to others (Van Manen,
1990). The mothers in this study viewed themselves in relation to the very personal
experience they had mothering their adopted child. I followed three general steps of
data analysis: sententious, selective, and detailed, and with each step, the existential life
worlds were used to guide reflection (Van Manen, 1990).
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After the first nine interviews were completed, I began formal data analysis. To
ascertain the essence of the participants’ experiences, I first read and re-read the texts
individually to get a feeling for the overall meaning in each interview. This is called the
sententious approach. As there is no one correct way to conduct a phenomenological
data analysis, I also spent hours listening to the audio recording. This allowed me to
hear the tones and inflections of voice and to listen for pauses, sighs, and laughs within
the speech, all of which provided additional meaning. I believed this was necessary
because the interviews were conducted by telephone, which prevented me from seeing
body language. Although this fact might be considered a shortcoming in the research,
interviews conducted on the telephone also provide participants with some degree of
anonymity, which might allow them to speak more freely. The brief field notes taken
during the interviews also were reviewed. Listening to the spoken words proved to be
valuable at helping me discover meaning within the words; it also revealed unspoken
feelings. Having completed the sententious step, I began to see similarities within the
text.
The next step, referred to as the selective approach, required me to read the text
and highlight any phrases that seemed important to describing the phenomenon. Taking
various colored highlighter pens, I proceeded line by line through the text, guided by
what I had heard in the first step. Statements that referred to physical health were
highlighted in green. Statements that discussed the children’s behavior were colored
pink. Any statements discussing a lack of information or lack of history were colored
yellow. The numerous statements that the mother’s made about “being different” were
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highlighted orange. Statements made about interactions with health care providers were
colored blue. Then I took time to reflect on these initial ideas.
A second review of the data resulted in new colors being introduced. The
statements initially marked blue could be sub-divided into three additional ideas. The
mothers made statements about health care providers not understanding them (remained
blue), how they proceeded with providers to help their child overcome health challenges
(marked red), and statements describing that they needed help with their children’s
health problems (underlined in pencil).
The final step was a detailed review, with each line of the text carefully read. I
felt it helpful to read the text aloud. After reading a single line, I attempted to discern
the meaning of the words. Paying close attention to the words highlighted by colored
markers, themes began to emerge. The green statements described children who
appeared healthy but weren’t. Upon further reflection, many of the green statements
seemed to mean that although the children had health problems that weren’t initially
apparent, these problems seemed to be overlooked by the mothers. This theme was
labeled “Seeing Healthy Children despite the Challenges.” With that theme identified,
the next two themes that followed were “Struggling to Help the Children” and “Needing
Help.” The statements marked in red and underlined in pencil comprised these themes,
which revealed how the mothers went about helping their children overcome their
health problems and become “normal and regular” children as well as how they needed
help during this process. The numerous pink statements that described the children’s
behavior were obvious displays of grief. These statements also contained details of how
the mothers worked to help their children through the grief behaviors. The statements in
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yellow all were references to unknown or lost information. Using the words of a
participant, this theme was labeled “Missing Lost Pieces.” The orange statements were
labeled “Being Different” since these statements gave detailed accounts by the mothers
about how they felt dissimilar to other non-adoptive families. The final theme was
derived from the blue statements that described health care providers who appeared not
to understand the needs of the adopted mothers and their children and how the mothers
stated they needed more. This was labeled “Needing More from Providers.”
After these themes had been identified, I returned to complete the same data
analysis procedures on the last three interviews. This gave me the opportunity to ensure
data completeness. At this time, I called three participants to clarify some of their
statements in short conversations. At that point, I felt I had captured the themes
effectively. Table 1 summarizes the themes and includes excerpts from the data and
quotes of participants in support of the themes. Whenever possible, the participants’
own words were used to label the themes. Following the table is a detailed explanation
of each theme.
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Table 1
Themes Extracted from Participant Interviews
Themes
Seeing
Healthy
Children
Despite the
Challenges
Excerpts of the Data
Children who the mothers
initially described as:
Appearing physically healthy
Strong
Active
Normal on growth charts
Good appetite
Quotes of Participants
“She actually had very good
health; she did have a couple of
problems but basically nothing
that was going to pose a big
lifelong problem.”
“He was seemingly healthy but
we did find out he had TB.”
But had:
Having hearing defects
Tuberculosis
Malnourished
Speech delays
Developmental delays
Cleft palate
Ear infections
Mumps
Struggling to
Help the
Children
Speech therapy
Occupational therapy
Attachment therapy
Family therapy
Repairing cleft palates
Establishing a good listening
environment
Shrinking their world
Bonding/attaching
Repairing teeth
Treating infections
Resolving grief
Resolving trauma
“And it started out where we
would have to sleep right next to
her crib and hold her hand. And
you know, it was hard, it was
really hard but basically it took a
couple months but it worked.”
“They closed his palate and put
tubes in his ears…We spent a
year in speech therapy through
the Early Steps and it’s like night
and day.”
“We had a lot of work to do
those first couple of years. We
had therapy five days a week.”
“Putting her to sleep was always
a challenge for the first six
months. It was screaming bloody
murder tantrums. Just screaming,
screaming, screaming, and the
only thing you could do was
hold her and rock her until she
exhausted herself.”
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Themes
Needing Help
Excerpts of the Data
Mother reported needing help
with:
Finding resources
Handling emotional and
behavioral problems
Identifying health problems
Bonding
Learning how to parent at their
child’s developmental level
Quotes of Participants
“They (health care providers)
need to say ‘Hey, here are
resources for you because you
are bringing home a child who is
not from a typical situation.’”
“I went online and you know
read about what people (other
adoptive parents) were saying
about different things and I’d
post stuff and get answers that
way.”
“I live in a small community and
there needs to be more outreach
for adoptive parents.”
Missing Lost
Pieces
Mothers reported:
No available birth history
No or little medical history
No history of the child’s daily
life before placement
Wondering if a child’s
behaviors are from abuse
“I feel like there are pieces
missing in his puzzle and you
can’t expect me to know all the
pieces.”
“There were a lot of questions
that we couldn’t answer. So we
did do a whole line of blood
work when he came home.”
“Is this something caused by her
birth? You know, I didn’t know
but I wondered. It’s like a hole,
you know…in her history.”
“I think she just had a horrible
medical experience that we don’t
know about…It was definitely
something.”
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Themes
Being
Different
Excerpts of the Data
Mothers reported that these
made adoptive children and
adoptive mothering unique:
Being from a different culture
Speaking/understanding a
different language
Not being a biological child
Not being a birth parent
Having to practice leap-frog
parenting
Having special needs
Not being a newborn
Needing special testing
Bonding differently
Having diseases not common
in the United States
Quotes of Participants
“I think that the important things
they (providers) need to realize
is that these kids are different,
and especially emotionally than
biological children, and they
need to address those issues
differently.”
“They (the emergency room
staff) were bringing in all of the
people (other staff) because
nobody had ever seen the
mumps before. I felt kind of
weird. I felt bad because they
were all looking at her and she
was like, what the heck is going
on?”
“You don’t want to just write
‘adopted’ (on your child’s
paperwork)….You don’t want to
feel you are different.”
Wanting More Mothers reported primary
from
providers failed to:
Providers
Test for common conditions
Provide anticipatory guidance
specific to adoptees
Provide resources
Provide emotional support
Have a specific treatment
protocol
Be sensitive
Identify attachment or grief
problems
Be empathetic
This left them wanting more
support than was offered.
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“I think kids adopted
internationally are susceptible to
different diseases that we don’t
check for here…I think they
(health care providers) should
know what to look for.”
“They get so caught up in the
medical stuff that they make you
uncomfortable.”
“He wasn’t sure what shots he
was going to do right away.
They don’t have an actual
protocol for adopted kids; they
just kind of wing it, I think.”
Themes
Seeing Healthy Children, Despite the Challenges
Every mother in the study described her child’s health status as healthy upon
arrival to the United States. They used these words specifically to describe this health:
seemingly healthy, very healthy, completely healthy, appeared healthy, remarkably
healthy, generally healthy, pretty healthy, looked good; one described her child’s health
as “wasn’t poor but it wasn’t great.” Despite this initial assertion of health, every
mother went on to discuss that her child actually did have one or several significant
health problems. The health problems experienced by the adopted children of the
mothers in this study were typical of those experienced by other international adoptees,
such as cleft palates, infectious diseases, and developmental delays (Narad & Mason,
2004; Miller, 2005a). Several of the mothers stated that before the adoption they had
attended workshops or learning sessions with their adoption agencies, where they
learned about health problems common in their children. As a result, they knew their
children might come home with problems. Keeping this information in mind, their
descriptions of “health” may have reflected that the mothers were aware that their
children might have minor health issues but that they believed these issues would be
“nothing that was going to pose a big lifelong problem.” They appeared to deny the
severity of the challenges their children faced.
Basically, their initial assertions that their children were healthy overlooked and
downplayed their children’s actual health challenges because the mothers saw the health
problems as fixable and if not repairable, at least manageable. Three of the mothers
brought home children who already had been labeled “special needs;” one child had a
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cleft palate, another had unilateral hearing loss, and one appeared to be autistic. The
mothers of these three children arranged for specialty care for their children before they
arrived in the United States. These mothers received their children, hoping they would
be “fixed.” What is concerning, though, are the numerous other health problems that
mothers revealed. While the problems were “repairable” from a basic physical view,
these health challenges had hidden risks. The mothers who reported severely
malnourished children seemed unaware that children malnourished in infancy
frequently have permanent stunting of growth and may experience “broad effects on
development, cognition, behavior, and immune function” (Miller, 2005a, p.156). These
effects can be permanent. Despite what the mothers believed, the issues experienced by
the adopted children may indeed cause “big lifelong problems.”
Upon arrival or during the course of the first year, all of the children who had
been institutionalized displayed health problems most likely related to this type of care.
These included typical orphanage behaviors (like uncontrollable temper tantrums and
rocking to sleep) (Miller, 2005a), developmental delays, growth delays, speech delays,
and difficulty with bonding and attachment. Another child reared in foster care, who
appeared to be a “regular one year old,” tested positive for latent tuberculosis shortly
after arrival. His mother described that finding out her son had this infectious disease
caused her to panic and feel guilty. She stated, “I just broke down. You have so much
going through your head. I was a new mom. You think your world is over. The week
before flashed through my head. Who have we seen? Who have we contaminated?”
Like this mother, international adoptive parents dealing with physical, developmental,
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and behavioral challenges of their newly adopted children often experience significant
stress (Miller, 2005a).
Struggling to Help the Children
The mothers gave detailed accounts of the actions they took to overcome their
children’s health challenges. These mothers sought care at international adoption
specialty clinics; they obtained occupational and physical therapy for their children,
with many obtaining speech therapy as well; and one even traveled to another state for a
cleft palate repair. Their descriptions of helping their children often included statements
about how these actions required a significant commitment of time. One mother
expressed that she felt she “lost” time with her daughter while trying to help her, but
seemed hopeful that her experience might help other adoptive mothers:
I wish we could have caught it (attachment problems) sooner and could have
done things to promote attachment like holding her and feeding her with a
bottle, rather than waiting a whole year while she was ill. I think we could have
bonded in a different way from the very beginning. These are things that I share
with other adoptive moms now when they come home. You know, like make
sure your attachment is secure.
Internationally adopted children, especially those who have been reared in
institutionalized settings, often come from conditions of neglect and sometimes abuse
(Miller, 2005a). They have suffered numerous losses. They have lost their birth parents,
birth country, caregivers, crib mates, language, and culture. Infants and toddlers do
grieve losses, and this grief is displayed physically, emotionally, and behaviorally.
Sleep disturbances as well as changes in appetite and energy level are common.
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Grieving children express general anxiety, fear, anger, and separation anxiety. They are
prone to developmental regression (including language regressions), temper tantrums,
agitation, clinging, and may have trouble with concentration (Di Ciacco, 2008).
Traumatized children often display the same behaviors and can be quite difficult to
manage (Brohl, 2007).
All of the children in this study displayed some type of these grief behaviors
during the early months after their adoption. Mothers reported that the children cried
inconsolably; had sleep disturbances including refusing to sleep, refusing to sleep alone,
night terrors or oversleeping; were withdrawn and quiet; had unmanageable temper
tantrums; had significant changes in appetite; and/or were clingy and fearful that their
mothers would leave them. Several of the children actually displayed trauma behaviors
that appeared to be triggered by certain situations. For example, one mother described a
daughter who would cry for hours after coming in contact with a male health care
provider, but who did “really well with females.” Another mother described that her
Chinese child would become frantic and inconsolable whenever she saw people of
Asian descent.
The mothers, whose children displayed significant grief behaviors, also
expressed how much effort it took to overcome these problems. They reported rocking
children to sleep (this continued each night for as long as a year), sleeping on the floor
of their child’s room at night (this continued each night for several months), working
from home to avoid any separation from their child, “shrinking their child’s world,”
purposely regressing their child back to infancy (by keeping them on bottles and
treating them as young infants), seeking professional help, and patiently waiting for the
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behaviors to pass. “Shrinking their world” is adoption language that means to
intentionally limit your child’s exposure to only his/her immediate family and to limit
trips from home to only those that are necessary, such as to the doctor or the grocery
store. Adoption agencies and often adoption specialists instruct families to avoid
vacation travel and social events, including having a birthday party for the adopted
child, for the first few months home.
The idea behind “shrinking” is to keep the child’s world small while he/she has
time to adjust to his/her new environment and feel secure. While this might provide the
adopted children with stable, secure environments, it might create challenges for the
new mothers. Positive social support has been identified as an important factor for a
woman successfully transitioning into her role as a mother (Mercer & Walker, 2006).
An obvious drawback of the “shrink their world” technique, which can include no
overnight trips to grandparents’ homes, is that it severely limits the support friends and
family members can offer the new adoptive mother. One mother in this study reported
being told by her international adoption specialty clinic to “shrink” her daughter’s world
for the first year. As earlier research has highlighted, adoptive parents already may feel
alienated and marginalized by society and health care providers (Daniluk & HurtigMitchell, 2003; Murphy, 2009b; Rykkje, 2007); this technique may worsen feelings of
isolation.
The mothers in this study described the time spent helping their children achieve
wellness and normalcy as “difficult, “a long process,” and as something they had to just
“suffer through.” Despite the difficulty, the mothers appeared dedicated to their
children. Previous studies support that adoptive parents generally are well educated,
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dedicated, and persistent. They are motivated to help their children succeed and will
look for ways to overcome delays (McGuinness, Ryan, & Robinson, 2005; International
Adoption Project, 2002). This was the case with the mothers in this study. Of course,
this does not mean they should have to find this help independently. The next theme
details this need.
Needing Help
Throughout the interviews, the mothers who participated in this research
expressed that they needed help caring for their newly adopted children. Most of the
mothers depended on their health care providers to know the kind of physical care their
children needed. They followed their providers’ recommendations on screening,
vaccination, and physical care, such as what to feed underweight babies. Since only two
mothers reported that their children did not receive screening tests or re-vaccination, it
does appear that most of the children of the mothers in this study received appropriate
physical care and screening. Although the children’s physical needs were challenging,
the mothers reported that these needs were indeed met with the help of the health care
providers.
Unfortunately, the mothers in this study felt unprepared to handle the behavioral
and developmental challenges their children faced. Earlier research revealed the same
findings (Paulson & Merighi, 2009). Some mothers reported returning to their adoption
agencies or their social workers for guidance with behavioral problems. Other mothers
in this study asked their health care providers for guidance on behavioral issues, such as
sleep. However, most felt that the advice they received was not helpful and they
subsequently reported feeling unsupported. Rykke (2007) reported similar findings of
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adoptive parents feeling unsupported by their nurses regarding how to cope with their
children’s early attachment behaviors. Many of the mothers in this study also stated that
they turned to each other for assistance. They asked for advice from fellow adoptive
parents and several sought guidance from online adoptive parent forums on the Internet.
This finding is congruent with previous literature, which revealed that international
adoptive parents often seek support from each other in online forums (Celock, 2006;
Sanford & Sanford, 2008).
Of special note, a few mothers in this study never shared with their health care
providers the behavioral problems their children were having. One mother reported that
her adopted daughter experienced “night terrors” for three years after the adoption;
however, she did not tell the pediatrician about it. She thought “all kids cry all night
long.” This mother sought support from another adoptive mother. This finding is similar
to the earlier pilot study findings, where some of the mothers revealed that they
specifically had withheld information from providers (Murphy, 2009b). Obviously, nondisclosure by the mothers limits support from health care providers. Mothers who fail to
reveal a problem and ask for help are not likely to get assistance to resolve that
problem. Again, this appears to be denial by the mothers about the existence of health
problems in their adopted children.
Though many mothers expressed that they needed help and sought help,
ultimately some chose to find their own solutions. One mother stated, “I just kind of
dealt with it (her child’s sleep issues) myself.” Another participant shared, “So I gave
up with his (her pediatrician’s) suggestions and just started doing my own things to
comfort her.” Mercer (2004) stated that mothers who work to learn about their child’s
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specific needs and show commitment to their child are displaying a positive adjustment
to motherhood (Mercer, 2004). The mothers in this study support this contention.
Despite the challenges, they were able to commit to their children and support their
children’s specific needs.
Missing the Lost Pieces
Previous literature has revealed that medical records on adoptees often are
erroneous or misleading (Narad & Mason, 2004; Miller, 2005a; Verla-Tebit, Zhu,
Holsinger, & Mandalakas, 2009) and obviously this can make treatment of the children
after the adoption challenging. The findings in this study support that this is indeed a
problem for adoptive families. The mothers consistently expressed that they struggled to
care for their newly adopted children because there were pieces of information about
their children’s birth histories, medical histories, and about the events that occurred in
their children’s young lives before placement that were lost. This lack of information
was described as “holes in the history,” “missing pieces,” and “no way of knowing.”
If their child had any health history at all, it was brief. One mother stated, “We
didn’t get a packet of information (on the adopted child), we got a single piece of paper
that said what vaccines he got.” The mothers communicated that this lack of
information was irritating and often made them feel inadequate. The participants
explained that mothers should know all things about their children, but in their case,
they did not know even basic information. Since their children’s genetic health history
had been lost, the mothers expressed frustration that this lack of information could
impact their children’s access to appropriate health care in the future. One mother
though expressed that she turned to her health care provider to help her “find the
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missing pieces.” She felt that the evaluation the health care provider completed on her
child provided her with some additional health information that she felt had initially
been lost. This was a source of comfort to her.
Being Different
Throughout the text, mothers expressed “being different.” This difference was
related to how they felt about themselves as well as how they felt others treated them.
The mothers explained that they felt they were different because, although they were
new mothers, they were not new mothers of newborns. In other words, they were
experiencing “leap-frog” mothering. This required them to parent their child at their
current developmental level without first experiencing the previous levels (Weir, 2003).
This left them feeling unprepared and inadequate. The mothers also voiced that being an
adoptive mother simply was different from being a birth mother. Their lives together
had started months after “normal” biological families had, and this delay in time created
unique challenges for them. Their newly adopted children had different needs than
healthy newborns. These findings echo earlier findings in the literature that revealed
adoptive parents often struggle and feel overwhelmed during their transition to
parenthood (Daniluk & Hurtig-Mitchell, 2003; Murphy, 2009b).
Some mothers expressed frustration both with being seen as different and as not
being seen as different. This is expressed in statements such as “You always feel like
people are looking at you and trying to figure out your situation,” and “Everyone else
just saw her as a regular 14 month old child.” As noted previously, society often sees
adoptive families as “second best families” and this can lead to adoptive families
feeling marginalized (Daniluk & Hurtig-Mitchell, 2003); this was expressed by some of
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the mothers in this study. The participants explained that their difference was alienating
and some suggested that this resulted in their children receiving what they deemed
inappropriate health care. Other mothers in the study specifically did not express being
treated as “different.” Instead, they stressed how important it was that they and their
children were treated the “same.” The importance for sameness was shared in
comments such as where one mother proudly expressed “She’s been treated just as any
other child.” Internationally adopted children bring unique needs to their adoptive
families (Miller, 2005a). Ultimately, the new mothers in this study wanted health care
providers to acknowledge their children’s differences but yet treat them with equality.
Wanting More from Providers
The final theme revealed how the mothers wanted health care providers to truly
understand the specific needs and situations of international adoptive families. The final
interview question was “what do you want health care providers to know about
international adoptive family needs during the early months at home?” This question
resulted in an outpouring of responses, which highlighted that health care providers
seemed unaware of what the adopted children needed and what the adoptive mothers
wanted. While, overall, there was a sense that the children’s physical needs were met by
providers, the mothers seemed disappointed in the mental health care their children
received. Developmental screening also was lacking. Again, the mothers expressed how
their differences were disregarded. As in the earlier pilot study (Murphy, 2009b), many
of the mothers voiced that health care providers not only lacked knowledge about their
children’s emotional needs but also about possible resources available for the families
to meet these needs. They simply wanted more from their providers.
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They (health care providers) need to say ‘Hey, here are resources for you
because you are bringing home a child who is not from a typical situation.’...I
just think if they had those resources available for you, I mean they don’t need
to be educated in them all but they should know if your child has spent x number
of months in foster care or in an orphanage that these are the resources your
child might need and here is where you can go in the county or privately to get
help. That would be a big help.
Additionally, many mothers of the adopted children expressed that the care their
children received was insensitive and caused the mothers stress. These findings support
the findings of previous studies, which suggested that health care providers’ lack of
knowledge inadvertently causes stress for adoptive parents (Smit, Delpier, Tarantino, &
Anderson, 2006; Smit, 2000).
The Essence
The final step in data analysis is a synthesis of the themes. Van Manen (1990)
explained that the overall outcome of phenomenological research was to ascertain the
essence or the meaning within the lived experience of the participants. In other words,
what does the lived experience of seeking health care for an internationally adopted
child mean to the adoptive mothers? According to Van Manen (1990), an essence is a
“linguistical construction, a description of the phenomenon” (p. 39). This essence is
derived from reflection on the identified themes. The “method” of reflection is in
writing and re-writing the stories and, if necessary, returning to repeat conversations
with participants to clarify meaning within themes (Van Manen, 1990).
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The themes “Seeing Healthy Children Despite the Challenges” and “Struggling
to Help the Children” reveal an underlying desire for “regular,” “normal” children.
Initially, the mothers described “healthy” children but then revealed the multiple health
challenges their children had. Throughout the interviews, the mothers acknowledged
their children’s unique needs, described how they worked tirelessly toward solutions,
and how they looked for guidance. They did so because the mothers wanted their
adopted children to be the children they initially imagined them to be. They had wished
to be the mothers of regular, normal, healthy children. The most revealing clue to this
underlying desire was found in their tone of voice. When describing the difficult
transition after the adoption, the mothers spoke softly and sometimes hesitantly. Some
mothers even seemed angry about how difficult the journey to wellness had been. But
when the mothers transitioned to discussing how their children had overcome their
health challenges, their tone of voice lightened. The mothers wanted families that were
not defined by labels or being different.
Ultimately, these themes are about having hope. The mothers’ hope was for
wellness for their internationally adopted children and for normalcy for their families.
Their initial descriptions of “healthy” children contained this desire. Their descriptions
were of the children they wished for and of the children as they know them now, in
present time. This hope also was expressed in all they did to care for their newly
adopted children. The mothers in this study saw the possibility of health present in their
adopted children, despite their initial problems. As one mother stated, she took a “leap
of faith” when adopting her son whom she initially believed might be autistic. She had
hoped he would be able to be well.
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The themes of “Being Different” and “Missing Lost Pieces” represent loss. The
adopted children entered their new adoptive homes after losing their birth parents,
culture, and language. The mothers also struggled with their own losses. They voiced
how difficult it was to care for their children because their genetic, medical, and social
backgrounds were unknown. They mourned the loss of their child’s history and of the
time they had lost with their child between birth and adoptive placement. The mothers
also seemed to identify the experience of “being different” than biological mothers as a
loss. They explained that they had lost the experience of becoming a “normal” mother.
Instead, they began their mothering experience nine months to nearly two years after
“nature intended.”
The remaining themes “Needing Help” and “Wanting More from Providers”
reveal an underlying sense of the frustration the mothers felt when trying to meet their
newly adopted children’s health needs. Their frustrations were multifold. While the
mothers identified that they needed help, they expressed that they were often unable to
identify appropriate sources of support for their children. They also stated that their
adoption agencies either failed to offer support after the adoption or did not offer
sufficient support. For example, one mother shared that her agency provided a few,
short post-adoption support meetings and then she “was on her own.” While health care
providers did generally meet the physical requirements of the children, the mothers
conveyed that their children’s emotional and developmental needs often seemed to be
disregarded. The mothers revealed that health care providers seemed oblivious to the
needs of the adoptive parents as well. For example, the mothers had difficulty practicing
“leap-frog” parenting (Weir, 2003) and so struggled to parent their new toddler having
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missed the opportunity to parent the same child when he/she was an infant. One mother
explained that her health care provider seemed to “forget” that she had only been a
parent for a few weeks although her daughter was nearly a year old and failed to see her
as a “new” mother. Compounding the difficulty in finding enough support for
themselves and their children, some of the mothers failed to disclose their children’s
behavioral problems! This created an obvious barrier to receiving appropriate help.
Ultimately, these themes reveal that the mothers felt that they had insufficient support in
meeting their children’s health care needs.
The essence of this study is found by integrating the meaning conveyed in the
themes. This essence or underlying essential structure provides a “single unifying
meaning of the phenomenon” (Creswell, 1998). The mothers worked to achieve health
for their newly adopted children and struggled to create normal lives for themselves and
their children, while wading through feelings of loss. Although their health care
providers met the adopted children’s physical needs, they often seemed to
underestimated the children’s emotional and behavioral needs. Sometimes the mothers’
hope for normal, regular children blinded them to their own reality and they failed to
reveal or delayed revealing the obvious difficulties they faced to those who could help
them. In response to the research question, what is the lived experience of mothers as
they seek health care for their internationally adopted children? The essence or meaning
of this study is that the adoptive mothers hoped to achieve wellness for their new
children and normalcy for their families within the context of loss and a desire for more
support. These international adoptive mothers dreamed of normal, regular families.
Ultimately, their hope and their dedication made that wish possible, despite their own
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initial denial of their children’s health challenges. One mother succinctly summarized
her journey to help her adopted child as one she was willing to “do over again, one
hundred million times.”
Criteria for Rigor
Munhall (2007) lists numerous ways to evaluate phenomenological research for
rigor. Basically, research that meets the criteria for rigor is conducted in an ethical and
reasonable way. The research findings are easily understandable, logical, and relevant.
The reader of the study walks away from the findings with a new understanding and
sensitivity to what the lived experience is like for the other. The findings inform them
and offer the reader a “new insight not thought of before” (Munhall, 2007, p. 562).
To meet the criteria for rigor in this study, I carefully created an audit trail. This
included keeping records of how the snowball sample was recruited, how the bracketing
process was completed, how the data were analyzed, how the themes were derived, and
how the essence was synthesized. Additionally, field notes were recorded during the
interviews as well as during follow up interviews. Records also were kept on the
member checks.
There were three other important steps for rigor to be complete: an independent
data review, member checks, and a review of the data by my dissertation chair. Since I
am an international adoptive mother, I sought an independent review of the data to
ensure that I, as the researcher, had effectively bracketed my biases. The independent
reviewer, who was not an adoptive mother, was a doctorally prepared family nurse
practitioner who had experience in phenomenological research. I sent all of the
transcripts, which had no identifying information, to the reviewer. After the reviewer
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had read the transcripts and shared her ideas on relevant quotes from the participants as
well as her ideas on possible themes, I submitted my themes and derived essence to the
reviewer. Numerous, lengthy discussions ensued to discuss and ensure that the themes
made logical sense and that the essence expressed the meaning of the participants’ lived
experience. Ultimately, the independent reviewer supported my findings.
Once the themes and the essence had been written and reviewed, three
participants were contacted to do member checks, the second step in the process. The
written themes and essence were emailed in a Word document to these participants.
Once they completed their review and reflection, they were instructed to call me to
discuss the findings. All three participants expressed to me that the findings supported
their experience. One stated, “That’s it, that’s totally it.” Another expressed, “That’s our
story. Yes, that is exactly how it went.” Finally, my dissertation chair reviewed and
approved the transcripts of the interviews and my analysis of the data. After these
reviews, I felt confident that the criteria for rigor had been met.
Chapter Summary
In this chapter, the stories of the participants were narrated with rich description
by using many of the exact words of participants. The data was analyzed in a careful,
systematic, reflective way. Emerging themes were detailed, described, and supported
with relevant literature. The essence then was synthesized logically from the themes.
Criteria for rigor were discussed, including how the participants were actively engaged
in the review of the study findings. In conclusion, the findings revealed that the lived
experience of international adoptive mothers as they sought health care for their
children was one of hope. Ultimately, each mother hoped to achieve wellness for their
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child and normalcy for their family within the context of loss and a desire for more
support.
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CHAPTER 5
Discussion, Implications, and Recommendations
Introduction
This final chapter reviews the findings of the research study and places them in
the context of Swanson’s theoretical perspective. Implications for practice are discussed
and recommendations for policy are delineated. Limitations of the research are also
discussed. Finally, implications for future research are suggested.
Discussion of Philosophy, Theory, and Findings
Phenomenology is both a philosophical paradigm and a research method.
Phenomenology allows for a holistic view of human beings, a way to see how humans
truly are in their world. Heidegger (1962) explained that the purpose of phenomenology
was to understand and explain human experience, as it existed, “to the things
themselves.” Benner (1985) stressed the importance of using phenomenological method
within nursing. Her belief was that human illness and health needed to be examined by
researching the experiences of those involved. Since human experience is complicated
and occurs within the context of relationships and culture (Benner, 1985), if one wants
to understand the meaning of another’s experience, phenomenological perspective
offers a way to this understanding.
While phenomenological methods were used for data analysis in this study,
Swanson’s (1991) Middle Range Theory of Caring was the theoretical perspective that
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guided the researcher. Initially, the theory was used to make choices in how the data
was collected; it then provided direction in creating the actual interview questions.
Additionally, the theory provided a way in which to contextualize the findings and their
implications. Since Swanson developed her theory based on her research of perinatal
loss, this particular theory easily is applied to international adoptive families formed
within conditions of loss. While the theory originated in nursing, the researcher believes
the theory is applicable and useful to all health care providers. This theory, like other
caring theories in nursing, emphasizes the wholeness of persons and reminds providers
that patients require much more than physical care.
Swanson’s Middle Range Theory of Caring is built around five identified caring
processes: knowing, being with, doing for, enabling, and maintaining belief. ‘Knowing’
by health care providers must be based on the experiences and needs of the person
being cared for. As such, providers must bracket their own biases and be willing to see
and understand their patients as they actually are at this time and in this place. ‘Being
with’ is a caring process that describes provider presence. ‘Being with’ requires health
care providers to be emotionally and physically available to the patient. ‘Doing for’ is
Swanson’s process for helping patients achieve health and wellness. This is what health
care providers can do to help patients when they are unable to meet their needs on their
own. ‘Enabling’ is explained by Swanson (1991) to mean “facilitating the other’s
passage through life transitions and unfamiliar events” (p. 164). Health care providers
can guide patients through situations and help them grow and resolve problems. The
final caring process, ‘maintaining belief,’ calls for the health care provider simply to be
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the sustainer of hope. Swanson (1991) explained that providers have the power to
believe that their patients can and will grow from challenging life experiences.
In this study, the researcher examined the experiences of the participants and
sought the meaning in their experiences. Their words were used to create a text that
vividly expressed their lived experience. The purpose, of course, was to reveal what the
lived experience of seeking health care for a newly adopted child was like for the
mothers. The underlying meaning or essence of the lived experience for these mothers
was one of hope to achieve wellness for their children and normalcy for their families
within the context of loss and a desire for more support. This meaning can be
understood better if it is examined through the lens of Swanson’s theory. As providers
care for their patients, mothers also care for their children. The adoptive mothers in this
study ‘maintained their belief’ despite their children’s multitude of problems. They
‘maintained belief’ while simultaneously coping with their losses and navigating the
often unhelpful health care system. The mothers came to ‘know’ their children’s needs,
learned how to ‘be with’ them in their grief, ‘did for’ them by finding them therapy and
help, and ‘enabled’ their children by providing them a permanent, safe base from which
the adopted children may now explore and grow. By caring in this way, normalcy and
wellness were achieved.
With an informed understanding of what it was like for mothers to seek health
care for their adopted children, recommendations for practice, policy, and future
research emerged. These recommendations not only acknowledge the meaning found in
the lived experiences of the participants, but the recommendations also were developed
keeping Swanson’s theoretical framework firmly in mind. Below, implications for
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practice will be discussed for each identified theme and each will be explained within
the context of Swanson’s caring theory.
Implications for Practice
Seeing Healthy Children Despite the Challenges
Most of the adoptive mothers in this study were aware of the potential health
problems commonly found in international adoptees. However, this did not mean they
understood or were totally prepared to handle their children’s health issues. Some of the
mothers attended health seminars on the expected health of their soon-to-be adopted
children, provided by their adoption agencies, and/or they researched this information
themselves. There is the possibility, though, that adoptive parents who are in the process
of adopting may selectively hear that there is a possibility that their child will have
health challenges and may hope their child will be the one who is problem free.
Unfortunately, the adopted children of the mothers in this study arrived to the U.S. with
significant physical, developmental, and/or behavioral problems, similar to those
identified in the existing literature (Glennen & Masters, 2002; Jenista & Chapman,
1987; Mandalakas et al., 2008; Miller, 2005a; Murphy, 2009b; Narad & Mason, 2004;
Paulson & Merighi, 2009). Complicating matters further, the mothers initially denied or
minimized their children’s health challenges.
Several of the participants hired international adoption specialists to review their
child’s medical records before placement. Three of the mothers actually arranged for
specialty post-adoption care for their “special-needs” children before their arrival to the
United States, one at an international adoption clinic. As a result, the parents of these
three children, with identified physical health problems, had support systems for their
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problems already in place when their children arrived at their adoptive home. On the
other hand, the mothers who sought care from general health care providers initially
seemed unprepared to cope with the health problems their children encountered.
Supporting Paulsen and Merighi’s (2009) earlier findings, the mothers in this study
reported being most unprepared to deal with their adopted children’s developmental and
behavioral problems.
This finding can be situated in the context of Swanson’s theory (1991) under the
caring process of ‘knowing.’ To care for international adoptees and their families
effectively, health care providers should have knowledge of the common physical,
developmental, and behavioral problems within this population. It would be helpful for
providers to be familiar with appropriate screening and treatment for these conditions.
Also important, adoptive parents need direction to resources guidance, support, and
education as they care for the special needs of their adopted children.
Practice implications then must support better education of parents before and
after the adoption of their child. Specialists recommend pre-adoption medical
counseling (Miller, 2005a). This counseling includes reviewing the referred child’s
available medical records, discussing common problems and the possible outcomes of
institutionalized care, and providing guidance on what to expect during the early
months after arrival to the adoptive home. Discussions about grief, trauma, and
transition should also occur. Since parents may not truly “hear” the pre-adoption
counseling, the discussions should continue post-adoption as well. While the
government now does require pre-adoption education for adoptive parents, there are no
requirements for continuing education for parents after the adoption (e-CFR, 2010).
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Subsequently, repeating all of the pre-adoption information given to parents at postadoption health care visits would be helpful. If possible, adoptive parents also should be
provided with written guidelines for care, or at least directed to a written source. Dr.
Miller’s (2005a) book entitled The Handbook of International Adoption Medicine: A
Guide for Physicians, Parents, and Providers is an excellent way to meet this need.
As an additional point, Welsh et al. (2007) reported that there has been no
research to evaluate the effectiveness of international adoption clinics and international
adoption medical specialists. While this study did not focus on these entities, several
mothers did receive care from specialists in adoption medicine; overall, they perceived
that this care was of better quality than the care received from general providers.
Several mothers, who used adoption medical specialists before the adoption, actually
lamented that they had not used the specialty services after the adoption. With this
finding in mind, referral to an international adoption clinic, if one is available, might be
prudent.
Struggling to Help the Children and Needing Help
These two themes have been combined together for the purposes of discussion.
The mothers in this study voiced that their adopted children needed specific
interventions to overcome their health problems. The mothers also expressed that they
needed help getting these interventions. Some of the children received speech therapy
and physical therapy, while others needed behavioral interventions. The mothers stated
that finding these services for their children often was difficult. Many specifically stated
that they wished their primary health care providers had been better able to connect
them with available resources. Many of the mothers turned to their adoption agencies
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and other adoptive parents in an attempt to find appropriate resources. Subsequently, a
relevant finding of this study is that the adoptive mothers had a difficult time finding
specific developmental and, in particular, behavioral services for their children and this
ultimately delayed appropriate intervention for the adopted children. This included
obtaining help for their children’s grief behaviors.
These themes fit in Swanson’s (1991) theoretical framework under the processes
of ‘knowing,’‘doing for,’ and ‘enabling.’ In order to assist adoptive parents, providers
who ‘know’ that international adoptees commonly have developmental delays and
behavioral problems then can screen specifically for these problems. Once problems are
identified, providers can ‘do for’ adoptive families and initiate appropriate referrals,
such as to speech therapy. Once referrals have been made, providers can ‘enable’
parents to search for other services by providing them with a list of available resources
and directions on how to obtain them. Adoption agencies also should be aware of
appropriate resources and direct parents to these sources.
Early pre-adoption stress and trauma have negative consequences on behavioral
patterns after adoption (Groza & Ryan, 2002). Studies have discovered that adopted
children who have experienced institutionalized care experience significantly more
behavioral problems than children spared this experience (Groza & Ryan, 2002; Hawk
& McCall, 2010). Although internationally adopted children often experience
behavioral and developmental problems, especially during the early weeks home, and it
is recommended that adoptive parents receive anticipatory guidance to assist them
(Miller, 2005a), another study demonstrated that even though international adoptive
parents wanted knowledge on resources and coping strategies for parenting children
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with special needs, they reported being provided with little anticipatory guidance on
what to expect post placement (Molinari & Freeborn, 2006). This appears to be similar
to the experiences of the mothers in this study. While some mothers reported having
some pre-adoption preparation about their children’s possible health needs, most of the
mothers reported being totally unprepared to deal with the grief, post-orphanage, and
trauma behaviors their children displayed.
Wilson and Weaver (2010) revealed that internationally adopted children who
develop significant behavioral problems early on after adoptive placement often
develop persistent behavioral problems. Three of the mothers in this study reported that
their children had persistent behavioral problems that lasted beyond the first year home.
Each of these mothers reported delays in their children receiving care for their early
problem behaviors. Two of the mothers also reported that their children continue to
struggle with their behavioral problems years after their adoptions. Consequently, it is
reasonable to suggest that all internationally adopted children who display significant
behavioral problems, even early on after adoption, should be referred promptly to a
mental health provider or an early childhood specialist. Children who display severe
attachment related symptoms or symptoms of post-traumatic stress disorder need
referral to a child psychiatrist. Specialists then can determine if these simply are
transitional behaviors or behaviors that require treatment.
Children grieve losses. As discussed previously, adopted children have suffered
numerous losses. Unlike adults who can use words to process their grief, infants and
toddlers are pre-verbal and so their processing of grief is different than adults. This does
not make the grief any less real or less painful. Experiencing traumatic loss, such as the
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loss of a mother or caregiver, as an infant or toddler can lead to permanent damage to
the developing limbic area of the brain. This part of the brain regulates emotion (Di
Ciacco, 2008). Separation from a caregiver also can cause a dysregulation of biological
processes (Dozier & Rutter, 2008). Consequently, children respond to grief physically,
emotionally, behaviorally, and neurologically. Like the adopted children of the mothers
in this study, children express their grief by failing to thrive and grow, by having sleep
disturbances, by acting out behavior, by having attachment difficulties, and by
experiencing developmental delays (Di Ciacco, 2008).
Attachment to a primary caregiver is a process that occurs over a child’s first
three years of life (Bowlby, 1969). Inherent in this process is the development of trust
and the ability to begin distinguishing self from other. This task begins to occur at
approximately nine months of age. As a result, infants who lose a caregiver after nine
months of age experience this loss as abandonment. They know the “other” has left.
Infants who lose their caregiver before nine months of age experience this loss as
annihilation. Their world simply crumbles around them. Their sense of self and other
has not been established as a solid mental representation. Now, there is only complete
disruption. “There is nothing the child can hold onto to soothe her disrupted sense of the
world” (Di Ciacco, 2008, p. 72). The adopted children in this study experienced both
types of loss. Annihilation occurred when they initially were placed by birth parents in
foster care or orphanage care. Abandonment occurred when they were removed from
orphanage caregivers or foster mothers and placed in their new adoptive homes. Grief
and the difficulties caused by that grief should be expected in this situation.
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Adoption agencies should be informing prospective adoptive parents about the
typical grief behaviors in internationally adopted children before the children arrive to
their adoptive homes. Once home, health care providers also can educate new adoptive
parents about the stages of grief as well as the process of attachment. Parents need
specific instructions about how best to parent their child during these initial months in
the adoptive home. Grieving infants and toddlers need assistance to regain “regulation”
of their body processes. They require help to learn how to trust and attach to new
caregivers. They need time to be allowed to grieve their losses. To this end, it is of the
utmost importance that the child is provided with a secure, predictable, consistent
environment (Di Ciacco, 2008). Parents also need guidance on handling sleep
disturbances. Parents should be informed that sleep disturbances often are a result of
grief. “Crying it out” is not a recommended way to promote sleep in these children
(Hopkins-Best, 1997). Biological children, since they are firmly attached, may respond
favorably to this technique; however, being left to cry alone may devastate children who
have experienced abandonment and/or annihilation. Abandoned children may fear they
will be abandoned yet again. A recent study suggests that co-sleeping or close sleeping
with Chinese born adoptees was the method chosen by many of the international
adoptive parents to handle their child’s sleep disturbances (Tan, Marfo, & Dedrick,
2009). This was the case for most of the mothers in this study as well. Tan, Marfo, and
Dedrick (2009) pointed out that close sleeping actually promoted parent-child
attachment and revealed that the parents in their study were being sensitive to their
child’s needs. The authors also stated that the current recommendations of solo sleeping
for children suggested by pediatric providers in the United States simply represent a
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cultural bias. Some professionals actually have recommended co-sleeping for adoptees
(Gribble, 2007), although there might be safety issues with this suggestion. Instead,
recommend close-sleeping. Suggest that parents sleep near the child, not with the child.
For instance, one mother in the study reported sleeping on her child’s bedroom floor at
night. Her adopted child could see her, touch her hand, and hear her soothing voice. The
child knew she was not alone. As the child becomes secure in their new environment,
the sleep issue should resolve. In this current study of adoptive mothers, most of their
children resolved their sleep disturbances within the first six months. Obviously,
children with unresolved grief should be referred for professional counseling and
therapy. In regard to developmental concerns, providers should promptly refer parents
to sources of support after assessing the needs of their child. Most local governments
have programs established to provide children under three years of age with speech,
occupational, and physical therapy without cost. For children older than three years of
age, help often is available through public school systems. If the child has congenital
problems, it is important to remember that the child may qualify for other federal and
state support programs such as the Women, Infants and Children Program (WIC) (FNS,
2009). Do not assume social workers will handle these referrals. Although international
adoptees with special needs require services similar to special needs children adopted
domestically (Groza & Ryan, 2001), even domestic adoptive parents who adopted
within state social service systems reported difficulties obtaining services. One in five
parents reported being dissatisfied with the services provided (McDonald, Propp, &
Murphy, 2001). International adoption agencies are not required to provide postplacement services beyond those dictated by placing countries (e-CFR, 2010).
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Consequently, international adoptive parents may not have a social worker after
placement.
In the case of speech delay, refer the child as soon as possible to a language
pathologist. Do not assume that the child is delayed only because of a change in
language. Internationally adopted children develop speech delays due to a multitude of
challenges. This developmental problem likely is a result of a combination of factors
such as neglect, abuse, malnutrition, maternal causes, chronic illness, congenital
medical conditions, and a change in language. Prompt referral to a language specialist
will ensure the child receives treatment and therapy in a timely manner (Ladage, 2009).
Several mothers in this study complained that their children’s providers did not seem to
consider their child’s speech delayed. Each of these mothers eventually had their
children’s speech screened privately or by public school systems and, unfortunately, the
children did have delays that required considerable therapy. Had the providers identified
the speech delay, therapy could have been initiated earlier. Of course, the mothers’
initial denial of their children’s health challenges may have contributed to this delay as
well.
To enable adoptive parents to parent successfully, another important task for
adoption agencies is to encourage parents to establish support systems, preferably
during the pre-adoptive waiting period. Parents who have support systems in place will
be much better prepared to handle their children’s problems and the stress those
problems will bring to the family unit. Parents could be referred to local chapters of
international adoptive parent networks, such as Families with Children from China
(FCC). This active family networking group has local and online groups for adoptive
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parents to connect (Evans, 2008). Internet-only support groups also are an excellent way
for parents to connect and share experiences with one another. For parents of children
with specific health needs, these sites can provide advice and workable solutions for
coping with their children’s health problems (Baum, 2004).
Missing Lost Pieces
Adoptive parents enter the adoption grieving their own losses. Many have
suffered the pains of infertility and the loss of their hoped for biological child
(Cudmore, 2005). They have spent approximately a year or more “in the adoption
process” waiting for their child to arrive. They grieve the loss of that time with their
child. With their child’s arrival, they encounter more losses. The most obvious was a
lack of information about the child’s birth history, medical history, and history of their
previous care giving backgrounds. Their greatest loss seemed to be the loss of becoming
a “normal” mother. Instead, becoming the mothers of a newborns, they suddenly
became the mothers of older infants or toddlers! They initially felt unprepared to mother
the children they received. The mothers in this study expressed great frustration with
these losses.
As in the case of the previous theme, this theme can be viewed best through the
processes of ‘knowing,’ ‘being with,’ and ‘maintaining belief’ in Swanson’s (1991)
theory. When caring for an adopted child, health care providers also care for the
adoptive family. ‘Knowing’ the context of adoptive family unions enables providers to
better meet their needs. Providers who are willing to take the time simply to ‘be with’
adoptive parents as they struggle through their experience of loss can assist them in this
process. Offering information and support to adoptive parents strengthens their hope
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that they will be able to meet their children’s needs. This ‘maintains their belief’ that the
initial feelings of loss will lessen with time.
Adoption specialists long have recognized that medical records from developing
countries often are inaccurate. Occasionally, the records appear to even be falsified
(Narad & Mason, 2004; Miller, 2005a; Verla-Tebit, Zhu, Holsinger, & Mandalakas,
2009). The adoptive mothers in this study expressed frustration with the lack of birth
and medical records that they received on their child. They also expressed fear that not
knowing their children’s genetic history would negatively affect their future health. In
addition to not understanding the foreign medical records, some of the mothers voiced
confusion over why their children needed to be re-vaccinated and/or seemed concerned
that their children did not receive appropriate screening once in the U.S.
Health care providers can ease parental concerns by scrutinizing the child’s
medical records carefully, drawing vaccination titers, and screening the child properly.
Providing the parents with the findings of these tests gives the parents information on
their child, filling in some of the missing pieces; this may lessen their sense of loss.
Parents can be given detailed explanations as to why re-vaccination is necessary or
recommended. Offering information that most disease processes are the result of
multiple factors, such as life style, and are not solely “genetic,” may ease parental
concerns about unknown genetic predispositions. Again, connecting adoptive parents to
available support resources can not only help them find support for their child’s medical
challenges, but it can help them cope with their own sense of loss as well.
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Being Different and Wanting More from Providers
These two themes have been combined for practice implications. The adoptive
mothers in this study repeatedly stated during the interviews that they and their children
were unique and, as such, had distinctive needs. The adopted children were not healthy
newborns. Instead, they were children who entered their families with unusual and
challenged backgrounds. The adopted children had experienced abandonment and many
had spent their first months of life in institutions where they had encountered varying
degrees of neglect. The adoptive mothers had lost the experience of pregnancy, missed
the first months of their children’s lives, and felt unprepared to handle the instant
motherhood of a non-newborn child. The mothers expressed feeling inadequate in their
new role as mother. The mothers also sometimes withheld information from their
providers as well as denied the existence or severity of their children’s health
challenges. Complicating these feelings of difference, the mothers reported that health
care providers failed to see their unique needs, treated them with insensitivity, lacked
empathy toward their difficult transition, and did not provide them with enough
appropriate guidance and support.
These themes can be situated in Swanson’s theory under the important
processes of ‘knowing’ and ‘enabling.’ Health care providers who effectively assist
families of internationally adopted children to grow and overcome their initial
challenges, understand and acknowledge that international adoptive families have some
needs that are different than those of biological families. They can assist or ‘enable’
adoptive families in their journey to meet these unique needs.
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A recent grounded theory study, which included interviews with adoptive
parents of special needs children and as well as with health care providers, found that
the adoptive parents experienced dissatisfaction with health care providers because the
providers lacked knowledge about common behavioral problems and because the
providers failed to direct parents to appropriate resources (Molinari & Freeborn, 2006).
The adoptive mothers in this study complained of similar frustrations. Interestingly,
although the health care providers (physicians and nurse practitioners) who were
interviewed for the grounded theory study admitted that they did not have specific
knowledge about adoption related behavioral issues such as grief and reactive
attachment disorder, they still believed they had “provided quality care” (Molinari &
Freeborn, 2006). Unfortunately, health care providers may be unaware that their lack of
knowledge might affect the quality of the care provided to adoptive families.
While the mothers in this study focused on being “different,” not all of their
experiences were unique to adoption. All of the mothers in this study were over 30, with
the mean age of the mothers being 42 years of age. Another qualitative study
investigated what it was like to become a biological mother for the first time after 35
years of age. The results indicated that the mothers initially struggled with the transition
to motherhood, which was described as a “nightmare,” and that it took 6-8 months for
the mothers to feel adequate in their new role as mother (Carolan, 2005). Carolan
(2005) identified that the older biological mothers eventually learned to individualize
their responses to their infants, which was labeled “finding my (their) own way;” this
was similar to the adoptive mothers in the current study. The adoptive mothers also had
adapted and found their own solutions to challenges, such as sleep disturbances.
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Although the experiences of mothering for the two groups of mothers were similar, it is
important to understand that they were not exactly the same. As stated previously, the
adoptive mothers were parenting non-newborns with health challenges within
conditions of loss, not healthy biological newborns.
The most important finding in this current research study was the revelation that
although health care providers did provide some anticipatory guidance to the adoptive
mothers, the guidance provided failed to take into account the specific and unique needs
of international adoptees and their families. As one mother stated, “Maybe I should
have found somebody like that (an international adoption specialist)... because it would
have helped if she (my doctor) just had some good information about what is different
about internationally adopted children, you know, something specific to adopted
children.” Additionally, because the providers were unaware of problems common to
international adoptees, they also did not screen for them. For example, one of the
adoptive mothers described a child who suffered from night terrors and sleep
disturbances for over three years. Although the mother withheld this information from
her health care provider, the provider also failed to ask the mother directly if her child
was experiencing any common behavioral problems after the adoption. The mothers
also expressed how difficult it was to parent an “older” infant or toddler when this was
their first parenting experience. They quite literally had missed the first nine months or
more of their children’s lives. Ultimately, the provider’s lack of awareness of the unique
experiences of international adoptees and their families and the mothers’ failure to share
information led to ineffective anticipatory guidance and insufficient screening,
especially for developmental and behavioral problems. To assist parents in their hope to
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achieve wellness for their internationally adopted children, their challenges first must be
uncovered. Only then can appropriate treatment occur.
Although international adoption specialty clinics are available, general primary
care providers care for many internationally adopted children. One obvious implication
for this study’s findings is that pediatric providers could provide better care if they were
made aware of the unique needs of international adoptive families. As such, information
specific to the health care needs of internationally adopted children can be incorporated
directly into the pediatric education of health care providers. Currently, there are some
textbooks that already include this information; Colyar’s (2003) Well-Child Assessment
for Primary Care Providers can be used for this purpose. Additionally, health care
providers should be made aware of recommended screening protocols. Miller’s (2005a)
book that earlier was recommended as an excellent read for parents also is a highly
recommended source of information for providers. Better educated providers can
approach adoptive families with a sensitivity and empathy that acknowledges as well as
celebrates their difference. This will allow adoptive families to feel understood and
supported instead of labeled and marginalized
Adoptive mothers also should take a more active role in the health care their
children receive. A few of the mothers in this study reported that their agencies had
given them health checklists (that contained screening suggestions) to take with them to
the provider. This may be a helpful universal practice that can empower the mother and
inform the provider. Mothers who are well-informed by their adoption agencies of
common health problems will be better able to advocate for their child if those problems
occur. Mothers who are well-educated about the types of physical, behavioral, and
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developmental problems that are common to international adoptees and who also are
aware of the treatments available for these problems are in a stronger position to
advocate for appropriate care.
Online support groups have been mentioned previously as a way for
international adoptive families to connect. These forums would be an excellent place for
health care providers knowledgeable in the health care needs of international adoptees
to post information, such as the screening checklists, for adoptive parents. These forums
also could be used as a way to disseminate applicable research findings, such as those in
this study.
Implications for Policy
Important implications for public policy can be derived from the findings of this
research study. In 2009, in an effort to become compliant with the Hague Treaty, the
U.S. government established standards to accredit adoption agencies. Although the
standards specifically require adoption agencies to spend ten hours educating parents
about the medical and emotional health care needs of their children before the child is
placed, there are no specific requirements for post-adoption support services for health
issues. Adoption agencies must comply only with the post-adoption services dictated by
placing countries (e-CFR, 2010). One strong policy recommendation would be that
adoption agencies must support international adoptive families with support services
and education for at least another ten hours after the adoption has been completed.
Adoption agencies should be held accountable for providing parents with lists of
available resources to help with medical complications, emotional/behavioral problems,
and developmental delays. Adoption agencies also should be responsible for providing
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parents with a list of the recommended health screenings that they can share with their
health care provider.
The U.S. laws governing the health status of immigrating children are extremely
limited. The medical screening done by U.S. panel physicians in placing countries are
brief and are designed to look for specific contagious diseases. These exams do not
discern the true health status of international adoptees. To this end, the U.S. government
has placed on their website a disclaimer stating these limitations (United States
Department of State, n.d.). The problem that remains, however, is that many U.S. health
care providers are unaware of the immigration laws for children. As a result, some of
the providers, like two in this study, simply accept foreign medical records and fail to
screen and vaccinate the adopted children properly. A recommendation, therefore,
would be to improve the current screening practice that the U.S. government uses. This
could help prevent the multiple outbreaks of contagious disease linked to international
adoption (CDC, 2001; CDC, 2002; CDC, 2004a; CDC, 2004b; CDC, 2006; Curtis et al.,
1999; Friede et al., 1988; Sokal, Van Collie, & Buts, 1995 as cited in Chen, Barnett, &
Wilson, 2003; Wilson & Kimble, 2001).
Limitations and Implications for Future Research
The major limitation of this research is the homogeneity of the sample. The
mothers were all well-educated, Caucasian women. The children were adopted
primarily from institutionalized settings. However, in reality, this sample represents a
typical international adoptive family. Snowball sampling can be seen as another
limitation. However, the snowball sample in this study had several “starting points” and
so did not initiate from only one source.
140
Another limitation of this research is the time interval from the adoption of the
children to the interview with the mothers. Since the mean time from the children’s
arrival to the United States and the time of the interviews was 3.8 years, a considerable
amount of time had passed. Because the adoption events were not recent, this may have
affected the mother’s recall of those events.
This study revealed areas for future research. Several of the children in this
study did appear to receive inappropriate health screening on arrival. Several of the
mothers reported that neither vaccine titers nor re-vaccination were completed. One
mother specifically complained that her pediatrician refused to complete a HIV
screening. Another mother, a nurse, stated that she felt her pediatrician “just winged it
(care).” Future research should include a study of what care and screening of
international adoptees primary health care providers complete.
Another interesting area for future research would be in reference to attachment.
While there is significant research in biological families about how attachments are
formed, there is very little in the literature about how adoptive families form
attachments to each other. There also is little in the literature that discusses what actions
truly can help facilitate attachment in this situation. Future research should focus on
discerning how adoptive family attachments are formed and on what behaviors and
actions can create strong attachments in these families.
Conclusion
International adoptive families form under unique circumstances. Although
adoptive parents often are older and well-educated, as were the mothers in this
phenomenological study, these protective factors (McGuiness, Ryan, & Robinson,
141
2005) do not prevent parents from feeling overwhelmed by the care their newly adopted
children need. Adopted children often arrive to their new homes with a host of health
challenges (Miller, 2005a). The findings of this study revealed that adoptive mothers
struggled to find a sense of normalcy and to achieve wellness in their children because
they lacked information and were unable to get sufficient support from their health care
providers and other sources. Despite this lack of support, the mothers held hope that
they could overcome their children’s problems and become “regular” families. Health
care providers who are well educated about international adoptive family needs will be
better able to care for them. With this knowledge, providers can screen and support
these children and their families properly. Ultimately, this benefits not only the adoptive
families but the communities in which they reside as well.
142
APPENDIXES
143
APPENDIX A
Adoptive Mother Demographic Questionnaire
1) Age_________
2) Marital Status________
3) Education____________________
4) Occupation___________________
5) Age of your adopted child___________
6) If applicable, ages of other children in the household, are they also adopted?
_____________________________________________________________
7) Child’s country of origin _______________________
8) Length of time child has been in the United States ____________________
9) List any previous experience in the healthcare setting (as a recipient and/or as a
provider).
144
APPENDIX B
IRB Approval
145
146
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