close

Вход

Забыли?

вход по аккаунту

?

184

код для вставкиСкачать
American Journal of Medical Genetics 78:22–24 (1998)
Some Psychosocial Aspects of Nonlethal
Chondrodysplasias: V. Assessment of Personal Social
Support Using the Personal Resource Questionnaire
Alasdair G.W. Hunter*
Department of Genetics, Children’s Hospital of Eastern Ontario, and Department of Pediatrics, University of Ottawa,
Ottawa, Ontario, Canada
Social support has been shown to be an important influence on how an individual
copes with a number of stresses, including
acute and chronic illness, psychiatric morbidity, and life events. It can be thought of
as a dynamic process consisting of a network of persons who are available to provide support, and the level of support that is
perceived to be available from those persons. Patients with disproportionate short
stature due to a chondrodysplasia might be
expected to face greater challenges in developing a social support network. This study
assessed social support among a group of
dwarfed patients using the Personal Resource Questionnaire (PRQ85). The overall
extent and functioning of social support appears comparable to that in the general
population, but there are some differences
when unmarried patients are compared
with married patients and when those who
have affected spouses are compared with
those whose spouses are of average stature.
Am. J. Med. Genet. 78:22–24, 1998.
© 1998 Wiley-Liss, Inc.
KEY WORDS: chondrodysplasia; dwarf; social support; PRQ85
INTRODUCTION
The essential component of social support is the help
available to an individual through social ties [Turner et
al., 1983]. Social support has an objective component
(the social network), and a subjective aspect (the per-
*Correspondence to: Alasdair Hunter, Department of Genetics,
Children’s Hospital of Eastern Ontario, 401 Smyth Road, Ottawa,
Ontario, Canada, K1H 8L1. E-mail: hunter@cheo.on.ca
Received 16 May 1997; Accepted 23 March 1998
© 1998 Wiley-Liss, Inc.
ceived or qualitative value of interpersonal relationships) [Funch et al., 1986]. The social network is a measure of who is available, and under what circumstances, to provide support. In other words, it reflects
the whole social environment in which an individual
lives [Turner et al., 1983; Funch et al., 1986]. However,
it is of equal, if not greater, importance to recognise
that it is the perception of the individual of the availability and quality of the social interaction that correlates best with health outcomes that have themselves
been shown to be influenced by levels of social support
[Funch et al., 1986]. Not all social contacts or relationships are supportive and the actual amount of help
received is not necessarily related to the perception of
support received. In general, it has proved easier to
assess the quantitative rather than the qualitative aspects of social support [Orth-Gomér and Undén, 1987].
While a number of authors have attempted to further
define the individual components of social support
[Kahn and Antonucci, 1980; House, 1981; Cohen and
Hoberman, 1983], the final common pathway is the
preservation of an individual’s self-esteem and selfmastery in situations in times at stress [Turner et al.,
1983].
Social support has been shown to have a positive
effect on chronic and infectious illness, psychiatric morbidity, self-reporting of medical symptoms, illnessrelated behaviour, and recovery from illness [Funch et
al., 1986]. Positive effects of good social support have
been observed across a broad range of illnesses including asthma [De Araujo et al., 1973], coronary artery
disease [Lynch, 1977], reactive depression [Brown et
al., 1975], and chronic illnesses such as those requiring
hemodialysis [Dimond, 1979]. Social support may also
protect from the negative health effects of job loss
[Gore, 1978], and individuals suffering from neuroses
have been shown to have a more limited social network
with more negative social interactions than the general
population [Henderson et al., 1978].
The individuals with chondrodysplasias who participated in this study had disproportionate short stature,
in many cases associated with a distinctive facial appearance, and in some cases with associated medical
complaints that limited their physical mobility. Such
Social Support in Chondrodysplasias
23
TABLE I. Part 1 of PRQ85 Self-Assessment of Personal Support Network*
Number in group
Parent
Children
Spouce/partner
Relative/family
Friend
Neighbour/coworker
Spiritual advisor
Professional
Agency
Self-help group
No one available
Handle alone
Total study
population
Unmarried
Married
Unaffected
spouse
Affected
spouse
Control
101
4.4 (3.5)
0.48 (1.4)
4.1 (4.0)
4.5 (3.6)
5.6 (3.1)
1.2 (2.1)
1.0 (2.2)
2.0 (2.4)
0.47 (1.3)
0.39 (1.3)
0.1 (0.39)
0.67 (1.3)
55
5.1 (3.4)
0.33 (1.3)
1.6 (3.0)
4.4 (3.7)
6.1 (2.9)
1.3 (2.3)
1.0 (2.1)
1.9 (2.3)
0.4 (1.0)
0.27 (0.9)
0.09 (0.35)
0.9 (1.4)
46
3.4 (3.4)
0.65 (1.4)
7.1 (2.8)
4.6 (3.4)
5.0 (3.3)
1.1 (1.9)
1.0 (2.3)
2.0 (2.6)
0.54 (1.6)
0.52 (1.6)
0.10 (0.4)
0.41 (1.1)
30
2.8 (2.9)
0.81 (1.3)
7.9 (1.9)
4.8 (3.7)
5.2 (3.6)
0.9 (1.7)
0.13 (0.34)
1.9 (2.2)
0.44 (1.0)
0.06 (0.25)
0.19 (0.54)
0.88 (1.7)
16
3.7 (3.7)
0.57 (1.4)
6.6 (3.1)
4.5 (3.3)
4.8 (3.2)
1.2 (2.0)
1.4 (2.7)
2.0 (2.8)
0.6 (1.8)
0.78 (1.9)
0.07 (0.37)
0.17 (0.46)
2.4
2.1
6.9
2.7
3.6
1.1
1.7
1.7
0.61
0.37
0.16
0.91
2.8 (2.1)
3.5 (2.4)
2.4 (1.8)
2.28 (1.2)
2.35 (0.86)
2.24 (1.3)
Number of crisis reported per the 10 scenarios
3.0 (2.2)
3.1 (2.2)
a
Satisfaction with support provided at time of actual crises
2.4 (1.2)
2.44 (1.2)
Actual level of satisfaction with help in time of crisis (percentages)
Total study
Unmarried
Married
Unaff spouse
Aff spouse
‘‘Very’’ to
‘‘fairly
satisfied’’
‘‘Fairly’’ to ‘‘a little
satisfied’’
‘‘A little’’ to
‘‘little dissatisfied’’
‘‘A little dissatisfied’’
to ‘‘fairly dissatisfied’’
‘‘Fairly dissatisfied’’
to ‘‘very dissatisfied’’
‘‘Very dissatisfied’’
38.1
33.3
40.5
30.8
45.8
34.5
40.0
29.7
38.5
25.0
17.8
15.6
21.6
30.8
16.7
3.6
4.4
2.7
0.0
4.2
3.6
2.2
5.4
0.0
8.3
2.4
4.4
0.0
0.0
0.0
*Sources of support which would be used when facing the 10 different life-crisis scenarios. The numbers represent the number of times out of the 10
scenarios that a specific source of support would be sought. The standard deviation is given in parentheses.
a
Individual satisfaction is calculated as total of Likert satisfaction score for all crises experienced divided by the number of crises (low number, greater
satisfaction).
factors might be expected to reduce their likelihood of
marriage, employment, and general participation in social activities, and thus to reduce the size, and perhaps
the quality, or at least the nature of, their social network and support system. This paper describes the results of administering the Personal Resource Questionnaire [Weinert, 1987] social support measure to 101
individuals with disproportionate short stature due to
a chondrodysplasia.
METHODS
The patient population and data handling are reported in the first article in this series [Hunter, 1998].
The measurement instrument used is the Personal Resource Questionnaire (PRQ85) [Weinert, 1987]. The
construct of this measure is based on the model of relational functions of Weiss [1974]. There are two parts.
In the first part the individual is asked to indicate,
from a choice of various potential resources, where they
would turn for help, and the level of satisfaction experienced when those resources have actually been used,
in each of a series of 10 hypothetical life scenarios.
More than one resource can be chosen. The second part
is a 25-item, 7-point Likert scale, ranging from
‘‘strongly agree’’ (7) to ‘‘strongly disagree’’ (1), that measures perceived levels of social support. The questionnaire appears to have good internal consistency
(C. Weinert, personal communication) and construct
validity [Weinert and Tilden, 1990]. Lack of correlation
with the Marlowe-Crowne Social Desirability Scale has
demonstrated that there is no bias toward social desirability in the responses (J. Murtaugh, unpublished
thesis).
RESULTS
Table I gives the mean number of times (out of 10)
that a particular source of support was used. The total
study group has also been subdivided according to
marital status, and a ‘‘control’’ population from a study
where one member of the couple had multiple sclerosis
is also included. The table also includes data on the
actual number of crises that match one or more of the
scenarios that have been experienced by the patient, as
well as the degree of satisfaction that the patient felt
with the support received in these times of need.
Table II summarises the total scores for the second
part of the PRQ85, which includes the 25 questions on
a 7-point Likert scale. Thus, possible individual scores
range from 0 to 175, with high scores indicating a perception of greater social support. The study patients
are again subdivided according to marital status.
DISCUSSION
When attempting to assess the strength of the patients’ overall support network in comparison with
other populations the results are strongly influenced
by demographic factors such as age and marital status.
24
Hunter
TABLE II. Part 2 of PRQ85 Self-Assessment of Personal
Support Network*
Total study group
Unmarried patients
Married patients
Spouse affected
Spouse unaffected
General populationa
Number in group
Mean (SD)
101
55
46
16
30
243
139.8 (19.8)
136.0 (17.9)
143.2 (21.7)
146.3 (20.7)
137.3 (22.9)
141.4 (15.8)
*Summary of total scores of perceived social support, provided as mean and
standard deviation (in parentheses).
a
Based on weighted average of three studies.
For example, the couples where one member has multiple sclerosis (C. Weinert, personal communication)
are by definition married, and were older than our patients and thus more likely overall to have support
from children and spouses, but were less likely to have
surviving parents as support. However, it is clear from
Table I that the patients with chondrodysplasias have
at least as extensive a support network as do the comparison group, and that they are not more likely than
individuals in that group to experience situations
where there is no one who can help or where they
would handle matters by themselves. Comparison between patients based on their marital status show few
statistically significant differences, although there are
some trends, some of which are in keeping with the
results of other aspects of this study. Self help groups
are not an important resource for any of the groups but
are used about twice as often by married as unmarried
persons. This is in keeping with the rates of Little
People Association membership recorded in the lifestyles part of the study [see Hunter, 1998]. Likewise,
propositi who have an affected spouse are more likely
to turn to a support group than are those with an unaffected spouse (0.02< P <0.05). Affected individuals
who are married to an unaffected spouse are significantly less likely to turn to a spiritual advisor (0.005<
P <0.02) and are more likely to handle a crisis alone
(0.02< P <0.05) than are those who have an affected
spouse. They also show a greater tendency to indicate
that no one is available to help. These results are in
keeping with measures that show greater depression
(Part II of this study), and marital stress (Part IV)
among couples where only one member is a dwarf. Married individuals and those who are married to a dwarf
show a trend to fewer crises and a higher level of satisfaction with the support they have received than do
those who are unmarried or those who are married to
average-size persons.
Part 2 of the PRQ85 measures perceived social support, and the mean scores of the study population are
very similar to those of individuals in other populations
(Table II). As in Part 1, there is again a trend for married patients to show higher perceived support than
those who are unmarried, and for those who are married to affected spouses to have higher scores than
those married to unaffected spouses. However, the
standard deviations are large and none of the differences reach significance (0.05< P <0.10 and P >0.10,
respectively).
In conclusion, this study provides evidence that individuals with disproportionate short stature due to a
variety of chondrodysplasias have a social support network that is comparable in magnitude and perceived
level of support to that in the general population. There
is evidence that the availability and degree of support
is somewhat higher among those who are married, specifically among those whose spouse also has a chondrodysplasia.
ACKNOWLEDGMENTS
The individuals who helped with this study, professional as well as the patients and their families, are
more thoroughly acknowledged in Hunter [1996]. I
again thank them all, for without their selfless help
this study would not have been possible. The support of
the Children’s Hospital of Eastern Ontario, for my sabbatical leave, is again acknowledged.
REFERENCES
Brown GW, Bhrolchain M, Harris T (1975): Social class and psychiatric
disturbance among women in an urban population. Sociology 9:225–
254.
Cohen S, Hoberman HM (1983): Positive events and social supports as
buffers of life change stress. J Appl Soc Psychol 13:99–125.
De Araujo G, Van Arsdel P Jr, Holmes TH, Dudley D (1973): Life change,
coping ability and chronic intrinsic asthma. J Psychosom Res 17:359–
373.
Dimond M (1979): Social support and adaption to chronic illness: The case
of maintenance hemodialysis. Res Nurs Health 2:101–108.
Funch DP, Marshall JP, Gebhardt GP (1986): Assessment of a short scale
to measure social support. Soc Sci Med 23:337–344.
Gore S (1978): The effect of social support in moderating the health consequences of unemployment. J Health Soc Behav 19:157–165.
Henderson S, Duncan-Jones P, McAuley H, Ritchie K (1978): The patient’s
primary group. Br J Psychiatry 132:74–86.
House JS (1981): ‘‘Work Stress and Social Support.’’ Reading, MA: Addison-Wesley.
Hunter AGW (1996): Craniofacial anthropometric analysis in several types
of chondrodysplasias: Characteristic profiles and systematic measurement error. Am J Med Genet 65:5–12.
Hunter AGW (1998): Some psychosocial aspects of nonlethal chondrodysplasias: I. Assessment using a life-styles questionnaire. Am J Med
Genet 78:
Kahn RL, Antonucci TC (1980): Convoys over the life course: Attachment,
roles and social support. In Baltes PB, Brim OC Jr (eds): ‘‘Life-Span
Development and Behaviour.’’ Vol. 3. New York: Academic Press, pp
253–286.
Lynch J (1977): ‘‘The Broken Heart.’’ New York: Basic Books, pp 30–68.
Orth-Gomér K, Undén A-L (1987): The measurement of social support in
population surveys. Soc Sci Med 24:83–94.
Turner RJ, Frankel BG, Levin DM (1983): Social support: Conceptualization, measurement, and implications for mental health. Res Community Mental Health 3:67–111.
Weinert C (1987): A social support measure: PRQ-85. Nurs Res 36:273–
277.
Weinert C, Tilden V (1990): Measures of social support: Assessment of
validity. Nurs Res 39:212–216.
Weiss R (1974): The provisions of social relationships. In Rubin Z (ed):
‘‘Doing Unto Others.’’ Englewood Cliffs, N.J.: Prentice-Hall, pp 17–26.
Документ
Категория
Без категории
Просмотров
3
Размер файла
40 Кб
Теги
184
1/--страниц
Пожаловаться на содержимое документа