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: firstname.lastname@example.org 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 . 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 . 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