BARRIERS TO SOCIAL SUPPORT AND SUPPORT RECEIVED FROM THEIR FAMILIES OF ORIGIN AMONG GAY MEN WITH HIV/AIDS.
Research suggests that the social networks of gay men play a significant role in the individual's adaptation to HIV/AIDS. There is evidence that psychological functioning (adjustment to illness, more active coping, depression, hopelessness, mood disturbance, self-esteem, anxiety, and hostility) is related to satisfaction with, or perceived availability of, social support (Hays, Turner, & Coates, 1992; Kurdek & Siesky, 1990; Leserman, Perkins, & Evans, 1992; Namir, 1986; Namir, Wolcott, Fawzy, & Alumbaugh, 1987; Pakenham, Dadds, & Terry, 1994; Siegel, Karus, & Raveis, 1997; Turner, Hays, & Coates, 1993; Wolcott, Namir, Fawzy, Gottlieb, & Mitsuyasu, 1986; Wolf et al., 1991; Zich & Temoschok, 1987).
Although the family of origin is generally an important component of the support system of individuals who are experiencing the crisis of a physical illness, gay men with HIV/AIDS are more likely to seek and receive social support from friends and partners than from the family of origin (Hays, Catania, et al., 1990; Hays, Chauncey, et al., 1990; Hays, McKusick, et al., 1994; Schwarzer et al., 1994). The family of origin also is perceived as less effective in providing help than friends and partners (Blasband, 1990; Britton, Zarski, & Hobfoll, 1993; Hays, Catania, et al., 1990; Hays, Chauncey, et al., 1990; Hays, McKusick, et al., 1994). Social support from friends, but not family, has been significantly related to lower distress levels among men with HIV/AIDS in several studies (Britton et al., 1993; Hays, Catania, et al., 1990; Hays, Chauncey, et al., 1990; Hays, McKusick, et al., 1994).
Although initially the family of origin is a less important source of support, this situation may change over the course of the illness. Men with a diagnosis of AIDS are more likely to seek or receive support from their families of origin than those who have HIV are (Hays, Catania, et al., 1990; Schwartzer et al., 1994). Catania, Turner, Kyung-Hee, and Coates (1992) found that family support was more effective than peer support in helping gay men with AIDS cope with death anxiety.
Barriers to Support
There is currently no research that directly addresses the question of the barriers that men perceive in obtaining support from their families. The literature reviewed in this section is based on the clinical literature, on the empirical literature that has examined barriers to care perceived by men in relation to their support network in general, and on some of the empirically based research on social support that has attempted to explain why men prefer peers to family as sources of support.
The willingness of gay men to approach their families of origin for social support may be related to the family's past acceptance or rejection of their sexual orientation (Blasband, 1990; Kadushin, 1996; Perry, Ryan, Fogel, Fishman, & Jacobsberg, 1990). Some men may be reluctant to approach their families for help because enlisting the family as a source of support will require them to disclose their sexual orientation (Beckerman, 1994; Cates, Graham, Geoglin, & Tiekler, 1990; Lovejoy, 1990; Stulberg & Buckingham, 1988). This can produce a family crisis as the level of denial may be high in families who were not aware of a son's homosexuality until a diagnosis of HIV/AIDS (Cates et al., 1990; Stulberg & Buckingham, 1988). The stigma associated with HIV/AIDS also may create a barrier to receipt of support. The family may fear social ostracism if others in the community become aware of the fact that they have a relative with HIV/AIDS (Weitz, 1992).
Disclosure of sexual orientation may strain the relationship between a man's partner and the family of origin. Conflicts may arise over who has the right to implement an advance directive and who should provide care (Bonuck, 1993; Kadushin, 1996; Irevine, 1994; Pakenham, Dadds, & Terry, 1996). Parents who are having difficulty accepting the fact that their son is gay and has AIDS also may scapegoat the partner and blame him for their son's illness (Greif & Porembski, 1989).
Young men may not be accustomed to asking for help (Johnston, Stall, & Smith, 1995). A man may be reluctant to compromise his adult status or independence by asking his family of origin for assistance (Hays, Magee, & Chauncey, 1994).
Family members may have little knowledge about HIV/AIDS (Blasband, 1990). In this case the gay man may not approach the family for help because the perception is that such contact will not be beneficial (Hays, McKusick, et al., 1994).
HIV/AIDS also may have a negative effect on the man's relationship with his family. Some family members may blame the man for his illness, avoid discussing the illness, provide unsolicited advice or criticism, and display insensitivity to the limitations that HIV/AIDS places on physical abilities (Collins, 1994; Hays, Magee, et al., 1994). A pattern of intrusive, babying behavior has been documented among parents; this behavior is experienced as infantilizing by an adult male accustomed to caring for himself (Blasband, 1990; Hays, Catania, et al., 1990; Hays, Chauncey, et al., 1990).
Finally, practical issues may function as a barrier to care. Men may be separated from their families of origin by geographic distance (Johnston et al., 1995; Siegel, Ravels, & Karus, 1994). Middle-aged men generally will have parents who are retired and elderly and therefore unable to provide care, because they lack material resources or are experiencing health problems of their own (Johnston et al., 1995).
This review suggests that although the family of origin may become a more important source of support for the gay man as HIV/AIDS progresses, there are many barriers that make it difficult for men to gain support from their families. This study attempts to provide information about the type of support men actually receive from their families and the barriers that prevent them from obtaining care from their families over the course of the illness. Specifically, the study asks the following questions: How much contact do men have with their families? How close are men to each family member? What type of support is provided by the family? What is the effect of an AIDS diagnosis on the level of support and type of support provided by the family and the support differences among relatives? What factors are obstacles to receiving support from the family? What is the effect of an AIDS diagnosis on the level of barrier and types of barriers to obtaining support from the family and the barrier differences between relatives?
The period of data collection was from October 1996 to June 1997. Because gay men with HIV/AIDS constitute a"hidden population" there is no census-based sample frame or any other source from which to randomly sample a subset of the population. I decided to use a mail survey to gather as large a sample as possible from a variety of settings to attempt to obtain a representative sample (Kadushin, 1997). A list of 45 social service agencies in the Midwest that provided services to gay men with HIV/AIDS was compiled by examining the National Directory of AIDS Care (Harvey, 1996) and by using a snow ball sampling technique to generate additional names and addresses of agencies when agencies listed in the directory were contacted. Twenty-one (46 percent) of the agencies contacted agreed to participate in the project. A total of 842 questionnaires and attached return envelopes were distributed to agencies. The number of questionnaires mailed to each agency was determined by agency request and ranged from 10 to 320. Agencies were given the option of distributing the questionnaire in a waiting area, in support groups, or through contacts between individual case managers and clients. The study also was advertised in two Midwestern newspapers targeted to gay audiences and in two national gay magazines. These advertisements generated 70 requests for questionnaires. A total of 117 questionnaires were received. The fact that the research was on a "sensitive topic" or a topic involving stigmatizing and private behavior may have limited the number of respondents willing to participate (Kadushin, 1997). It is not possible to calculate a response rate because the number of questionnaires actually distributed is unknown.
The mail questionnaire was constructed after a review of the professional literature and the existing social support inventories. I decided that there were no existing social support questionnaires available to meet the needs of the current study and that it would be necessary to reformulate and adapt existing questionnaires for the purposes of this research.
The type and amount of social support provided by the family was measured with a question that asked respondents to indicate on a five-point scale, ranging from 0 = never to 4 = very often, how often each family member (mother/stepmother, father/stepfather and sibling) had provided emotional (for example, reassurance) instrumental (for example, providing goods), informational (for example, providing information/advice) and fun/relaxation support since the respondent became ill. The types of support measured (with the exception of fun/relaxation) and the five-point scale were adapted from the short form of the UCLA Social Support Inventory (Schwarzer et al., 1994).
Contact with the family was measured by asking respondents to indicate on a five-point scale, ranging from 0 = not at all to 4 = almost daily, how often they had contact with each family member in person and by phone or letter during the past three months. Closeness to family members was measured by asking respondents to indicate on a five-point scale, ranging from 0 - not at all close to 4 = extremely close, how close they felt to each relative before the illness and how close they felt "right now." Another series of questions measured whether the respondent had disclosed his sexual orientation and his HIV status to each family member and how long ago in years and months the disclosure had occurred. Responses to questions about disclosure of sexual orientation, and HIV status were scored, yes = 1 and no = 2. The preceding questions were adapted from Blasband (1990).
Satisfaction with support was measured with a question that asked respondents to rate on a five-point scale (ranging from 0 = very dissatisfied to 4 = very satisfied) their satisfaction with each type of support received from the family as a whole since becoming ill. This scale was adapted from Blasband (1990).
Barriers to support were measured with a question that asked to what extent (scored on a five-point scale ranging from 0 = not a barrier to getting help to 4 = an important barrier to getting help) a number of potential barriers prevented the respondent from obtaining support from each family member. The barriers were classified as knowledge ("doesn't know enough about HIV/AIDS"), independence ("I don't want to ask for help because I like to think of myself as independent"), relationship ("worries too much or overreacts to my illness"; "seems critical, displeased or angry with me because of HIV/AIDS"; "disregards, ignores, or minimizes problems or feelings concerning HIV/AIDS I feel are important";"expects too much from me; doesn't understand the limits my illness imposes on me"; "acts judgmental; has said it is my fault I am ill"; "avoids discussing the illness with me"); "practical" ("are sick and disabled so they can't help me";"doesn't have the financial resources to help me"; "lives too far away to be of help"), partner ("believes it is my partner's fault I am ill"; "puts me in the middle between her and my partner about who will provide care"), and conservative ("is very religious and views me as a sinner"; "is politically conservative and views me as an outcast"; "I feel I have to lie about my illness").
Respondents also were asked to provide demographic information such age, race, religion, highest level of education completed, current employment status, and household composition. HIV/AIDS diagnosis was measured with two questions. Men were asked how long ago in years and months they had tested positive for the HIV virus. A second question asked whether they had been diagnosed with AIDS. The answer to the question about AIDS was scored, no = 0 and yes = 1. Men also were asked how many times they had been hospitalized for AIDS-related conditions since developing AIDS symptoms.
Information on family composition was obtained by asking respondents to indicate which people (mother, father, stepmother, stepfather, brother and sister) were members of their family. A follow-up question then asked respondents who had both a mother and a stepmother to select the one with whom they had the closest relationship in completing the questionnaire. A similar question asked respondents who had both fathers and stepfathers to follow the same procedure. A third question also instructed respondents who had more than one brother or sister to select the sibling with whom they had the closest relationship in answering the questions.
The questionnaire was pretested during May 1996 with 10 gay men with HIV/AIDS who were clients of a Midwestern social services agency. The pretest revealed that some of the scales and directions for completing the questionnaire needed to be simplified so that men with different levels of literacy would be able to understand the questions.
Repeated measures multivariate analysis of variance (MANOVA) and pair-wise contrasts were computed to examine the effect of AIDS diagnosis on the level of support received, the levels of support differences among relatives, and different types of support. Repeated measures MANOVA and pair-wise contrasts also were computed to examine the effect of AIDS diagnosis on the level of barrier to obtaining support, the levels of barrier to support differences among relatives, and the different types of barrier. In addition, repeated measures MANOVA and pair-wise contrasts were computed to examine the levels of satisfaction with each type of support received and to compare differences in means for closeness to each relative both before and after the onset of the illness. The Bonferroni multiple comparison test at an experiment-wise alpha = .05 was used to test differences between pairs of means when a significant overall F value was computed. The Mann-Whitney and t tests were used to compute differences between pairs of means when data was ordinal and interval level, respectively. Pearson correlation coefficients were computed to determine the associations among interval level data.
Characteristics of Respondents
The mean age of the sample was 37 years (SD = 8.32, range = 21-73). The majority of respondents were white, had attended or graduated from college, and currently were not employed full-time (Table 1). A little more than one-third lived alone, and the remainder lived with roommates, partners, or relatives or in other living arrangements.
Approximately half of the respondents had HIV and half had an AIDS diagnosis (Table 1). The mean number of hospitalizations for AIDS-related conditions for the 117 respondents was 1.15 (SD = 2.50). The range for this question was from none to 20 hospitalizations. Attest found no significant differences among the respondents on age. The Mann-Whitney test found no significant differences on education; however, those with an AIDS diagnosis were significantly more likely (p [less than] .000) to be not working than those who had HIV.
The mean for family size for the 117 respondents was 5 (SD = 3.02, range = 1-21). More men had mothers in their families (81 percent) than fathers (58 percent). There were few stepmothers (19 percent, n = 22) or stepfathers (17 percent, n = 20). The mean number of sisters for the 94 men who had sisters was 2 (SD = 1.35, range = 1-9) and the mean number of brothers for the 86 respondents who had brothers was 3 (SD = 2.12, range = 1-11). Respondents identified 56 sisters and 39 brothers as closest siblings. Twenty-two respondents did not answer this question.
Table 1. Demographic Characteristics of Respondents Characteristic % Diagnosis (n = 116) HIV 53 AIDS 47 Race (n = 117) White 85 African American 9 Hispanic 3 Other 2 American Indian 1 Asian 1 Religion (n = 113) Catholic 27 Protestant 25 Other 25 No religion 22 Jewish 2 Education (n = 116) Less than 12th grade 8 High School graduate 17 Vocational School graduate 10 Some college 32 College graduate 17 Some graduate school 6 Graduate degree 10 Employment status (n = 117) Full-time 26 Part-time 14 Receiving disability 26 Unemployed 28 Other 7 Living situation (n = 116) Alone 35 With partner 29 With roommates 19 With relatives 10 Other 8 NOTE: Percentages may not add to 100 due to rounding.
Amount of Contact, Levels of Closeness, and Rates of Disclosure
The mean amount of in-person contact across all family members for all 117 respondents was"once a month or less" (M = 2.24, SD = 1.18). Men also had contact with family members by phone or letter a mean of "once a month or less" (M = 2.44, SD = 1.15). Respondents indicated that they had been moderately close to their families before the illness (M = 2.84, SD = 1.13) and that they were moderately close now (M = 2.95, SD - 1.15). There were significant differences in how close men felt to different family members before [F(3, 92) = 271.26, p [less than] .001] and after [F(3, 91) = 311.83, p [less than] .001] the illness. Post hoc comparison tests revealed that men felt closer to mothers and siblings than fathers both before and after they developed HIV/AIDS.
A majority of men had revealed their sexual orientation to their families (Table 2). In general, men had disclosed their sexual orientation to their families at least 12 years earlier and approximately eight years before disclosure of HIV status (Table 3).
Social Support Provided and Satisfaction with Support
The mean for support received from the family for 113 who answered the question was 2.40 (SD = .93). Emotional support was provided most often; mothers and siblings provided more support than fathers (Table 4). A repeated measures MANOVA computed to examine the effect of AIDS diagnosis on level of support and to compare the level of support differences among support providers (relatives) and types of support revealed a main effect for AIDS diagnosis [F(1, 61) = 4.87, p [less than] .05] on level of support. Inspection of the means for support received from the family when men had an AIDS diagnosis and when men had HIV revealed that men who had AIDS received a higher level of support from the family. Because the MANOVA found no interactions between AIDS diagnosis and relative or type of support, the variable of AIDS was dropped from the model and a second repeated measures MANOVA was computed that revealed a main effect for relative [F(2, 53) = 13.82, p [less than] .001] and type of support [F(3, 52) = 83.39, p [less than] .001]. Post hoc comparison tests found that mothers and siblings provided a significantly higher level of support than fathers. Post hoc comparison tests also revealed that the family provided a significantly higher level of emotional support than other types of support. A significantly higher level of relaxation/fun was provided than instrumental and informational support. An interaction also was found between the variables of relative and type of support [F(6, 49) = 6.05, p [less than] .001]. Mothers and siblings provided a significantly higher level of emotional, fun/relaxation, and informational support than fathers. Mothers also provided a significantly higher level of instrumental support than either siblings or fathers. Attest found no significant differences between the mean level of support provided by 38 brothers (M- 2.37, SD = .90) and 53 sisters (M = 2.70, SD = 1.01).
Table 2. Family Members Knowledge of Sexual Orientation and HIV and AIDS Diagnosis Knowledge Sexual Orientation HIV Diagnosis AIDS Diagnosis Family Member % n % n % n Mother 88 103 80 103 84 49 Father 82 82 74 83 79 38 Sibling 96 107 87 110 93 53
There were significant differences in respondents' satisfaction with the different types of support [F(4, 113) = 71.05, p [less than] .001] received from the family as a whole. Post hoc comparison tests revealed that all 117 men rated emotional support (M = 2.84, SD = 1.83) as significantly more satisfying than all of the other types of support. Fun/relaxation also was rated (M = 2.50, SD = 1.95) as significantly more satisfying than instrumental (M = 1.87, SD = 1.86) and informational support (M = 1.85, $D = 1.90). Positive correlations between the amount of each type of support received and satisfaction with that type of support were found for 113 of the respondents (emotional, r = .80, p [less than] .001; fun/relaxation, r = .74, p [less than] .001; informational, [TABULAR DATA FOR TABLE 3 OMITTED] r = .63, p [less than] .001; and instrumental, r = .65, p [less than] .001).
Barriers to Social Support
The mean for level of barrier to obtaining support from the family for 111 respondents was 2.24, (SD = .88). Men rated lack of knowledge about HIV/AIDS by the family as the largest barrier to obtaining help, followed by the desire to remain independent. The highest level of barrier was perceived in obtaining help from fathers (Table 4). For 110 respondents, there were significant negative correlations between the total amount of support received from the family and the level of barrier to obtaining support from the family (r = -.44, p [less than] .001), and for 89 respondents, there were significant negative correlations between total amount of support and satisfaction with support received from the family and the level of barrier to obtaining support from the family (r = -.51, p [less than] .001).
A repeated measures MANOVA computed to examine the effect of AIDS diagnosis on the level of barrier to obtaining support and to compare the level of barrier differences between support providers (relatives) and different types of barrier revealed no main effect for AIDS and no interactions between AIDS diagnosis and relative or type of barrier. However, the F value for the effect of AIDS diagnosis on the level of barrier to obtaining support was very close to significance, [F(1, 52) = 3.57, p [less than] .06]. Inspection of the means for the level of barrier when men had AIDS and when they had HIV revealed that men who had AIDS experienced a lower level of barrier to obtaining support from their families.
Table 4. Means for Support Received from and Degree of Barrier Perceived in Relation to the Family of Origin Amount of Support Variable M SD n Type of support Emotional 3.17 1.12 113 Relaxation/fun 2.71 1.17 113 Informational 1.94 1.02 113 Instrumental 1.84 .97 113 Relative/support provider Mother 2.58 1.13 96 Father 2.07 0.99 74 Sibling 2.46 1.01 108 Degree of Barrier Variable M SD n Type of barrier Knowledge 2.75 1.44 110 Independence 2.72 1.34 109 Relate 2.39 1.08 109 Practical 2.27 0.94 109 Conservative 1.79 .97 109 Partner 1.58 1.01 106 Relative/support provider Mother 2.30 1.00 95 Father 2.36 1.09 75 Sibling 2.07 .93 104
Because the MANOVA revealed no main effect for AIDS and no interactions between AIDS and the other variables, the variable of AIDS was dropped from the model, and a second repeated measures MANOVA was computed that revealed a main effect for relative [F(2, 43) = 4.07, p [less than] .05] and type of barrier [F(5, 40) = 17.76, p [less than] .001]. Post hoc comparison tests found that men experienced a significantly higher level of barrier in obtaining help from fathers than from siblings. Post hoc comparison tests also revealed that men perceived a significantly higher level of barrier to obtaining support in relation to lack of knowledge among family members about HIV/AIDS and fears of compromising independence (Table 5). Significantly lower levels of barrier were experienced in relation to conservative religious or political values connected to negative attitudes toward homosexuality and strains in the relationship between the family and the partner (Table 5). The MANOVA also revealed all interaction between the variables of relative and barrier [F(10, 35) = 2.76, p [less than]. 01]. Post hoc comparison tests found that a significantly higher level of barrier was experienced in relation to fathers than to mothers and siblings regarding lack of knowledge about HIV/AIDS and the expression of conservative political and religious values connected to negative attitudes toward homosexuality. A significantly higher level of barrier was experienced in relation to fathers than to siblings regarding relationship issues. A t test found no significant differences between the level of barrier to obtaining support from 36 brothers (M 2.02, SD- .91) and 51 sisters (M- 1.89, SD = .77).
Table 5. Main Effect for Type of Barrier (N = 106) Type of Barrier M SD Knowledge(a) 2.76 1.44 Independence(a,b) 2.72 1.34 Relationship(b,c) 2.39 1.08 Practical(c,d) 2.27 .94 Conservative(d,e) 1.79 .97 Partner(e) 1.58 1.01 NOTES: N is smaller than total sample due to missing data. Main effect: F(5, 40) = 17.76, p = .001. Means with the same superscript letter are not significantly different. Post hoc comparisons tests computed with Bonferroni multiple comparison test at alpha = .05.
In answering the question of the amount of support men received from the family, the study found that men had contact with their families infrequently and that the family did not provide a high level of support. This finding is consistent with earlier research (Hays, Catania, et al., 1990; Hays, Chauncey, et al., 1990; Hays, McKusick, et al., 1994; Schwarzer et al., 1994). Emotional support and fun/relaxation were provided at significantly higher levels than instrumental or informational support. Consistent with earlier research, (Schwarzer et al., 1994) men with AIDS received significantly higher levels of support from their families of origin than men with HIV.
Although earlier research (Hays, Chauncey, et al., 1990) found no differences in the type and level of support provided by different family members, this survey found that mothers and siblings provided a significantly higher level of support than fathers. Mothers and siblings provided a significantly higher level of emotional, fun/relaxation, and informational support than fathers. Mothers also provided a significantly higher level of instrumental support than fathers and siblings. Earlier research (Horwitz, 1993) on patterns of caregiving suggests that a hierarchy of obligations exists so that the primary basis of support within the family of origin stems from parents, particularly mothers. If a parent is not available, family members whose obligations do not normally involve caregiving (such as siblings) may provide compensatory help in place of the parent. In the present sample, the involvement of the sibling with the mother as the primary source of support may have been necessitated by the fact that the father did not assume a more supportive role.
One possible explanation for the fathers' low level of support is suggested by the barriers men identified to obtaining support from fathers. The survey found a significant negative association between the level of barrier to obtaining support and the level of support received. One explanation for the father's lower level of support is derived from the fact that men perceived a significantly higher level of barrier in relation to fathers than mothers and siblings regarding conservative political and social values connected to negative attitudes toward homosexuality and lack of knowledge about HIV/AIDS. Earlier research indicates that fathers have more difficulty accepting homosexuality than mothers (Ben-Ari, 1995; Boxer, Cook, & Herdt, 1991; Cohen & Savin-Williams, 1996; Cramer & Roach, 1988; D'Augelli & Hershberger, 1993). Fathers of gay men also are more reluctant to participate in treatment and support groups for HIV/AIDS than mothers (Fisher, Goldschmidt, Hays, & Catania, 1993). Therefore, homosexuality and HIV/AIDS may be experienced as more troublesome issues for fathers than other family members. These reactions may interfere with the ability of some fathers to provide support.
Although men were more likely to designate a sister than a brother as a closest sibling, the survey found no significant difference in the level of support, provided by brothers and sisters. This finding is consistent with earlier research on sibling support which found that sisters are only slightly more likely than brothers to provide social support (Connidis, 1989; Horwitz, 1993; Horwitz, Tessler, Fisher, & Gamache, 1992).
In answering the question about satisfaction with support, the survey found that men were significantly more satisfied with the emotional support and fun/relaxation they received from their families than the informational or instrumental support. There were strong correlations between the amount of each type of support men received and their satisfaction with support. Although a mount of support is therefore a variable that contributes to satisfaction, it may not be the only variable, because the correlation between amount of support received and satisfaction with support was high for all types of support even though men received smaller amounts of instrumental and informational support than emotional support and fun/relaxation.
It is also possible that satisfaction with support is dependent on whether the support is expected or desired from a particular source (Blasband, 1990). Instrumental or practical support, such as help with shopping, laundry, or meal preparation, may be experienced as damaging to a man's ego by making him feel too dependent or babied. Because the men in this sample had experienced an average of only one AIDS-related hospitalization, they also may not have been disabled enough to require instrumental assistance. Informational support refers not only to getting information but also to receiving advice. Although men did not perceive families as sources of information - they identified the family's lack of knowledge about HIV/AIDS as a barrier to getting help - they may have been dissatisfied because they were receiving unwanted advice from the family, which they experienced as intrusive (Blasband, 1990; Hays, Magee, et al., 1994).
In examining the barriers to obtaining support from the family, the study found that the mean rating for level of barrier was 2.24, suggesting that none of the barriers were rated at a high level as an obstacle to obtaining help. It is possible that the effect of barriers is cumulative or additive and that several barriers perceived as mild obstacles produce enough discomfort to create a disincentive to seeking support from the family. It is also possible that this response reflects a social desirability bias and that men were reluctant to endorse the barriers items more strongly because this would imply criticism of their families.
The survey found a trend for men with AIDS to perceive a lower level of barrier to obtaining support from the family than men with HIV. This finding is consistent with earlier research (Catania et al., 1992), which suggested that the possibility of death may motivate families to resolve past difficulties and relate to each other more positively. With regard to specific barriers, the survey found a significantly lower level of barrier in relation to conservative political or religious views connected with negative attitudes toward homosexuality and strains in the relationship between the family and the partner. The fact that a high proportion of the men in this sample had disclosed their sexual orientation to their families at least 12 years earlier suggests that, with the exception of some fathers, family members had an opportunity to work through initial reactions of denial, shock, and grief and come to an acceptance of, or at least an ability to acknowledge, their sons' or brothers' sexual orientation (Ben-Ari, 1995; Boxer et al., 1991; Cramer & Roach, 1988; Griffin, Wirth, & Wirth, 1986). Recent trends toward a higher level of tolerance in U.S. society toward homosexuality also may facilitate acceptance by the family (Goldberg, 1998).
Practical issues such as lack of geographic proximity to the family or parents' poor health were not rated highly as a barrier to obtaining support. Although the respondents in this study were satisfied with the amount of instrumental help they received from their families, they did not regard this help as beneficial as other types of help. Geographic proximity or ill health of a potential caregiver is likely to be an obstacle if instrumental help is desired or expected. Therefore, practical barriers may not have been highly rated because they did not represent obstacles to the type of help men wanted or expected from their families.
Lack of knowledge about HIV/AIDS and a desire to remain independent were the most highly rated barriers to obtaining support from the family. The tremendous amount of uncertainty and the continually changing knowledge base related to HIV/AIDS may make informational support very important to gay people with AIDS (PWAs) (Hays, Magee, et al., 1994) and the family's lack of knowledge about these issues a significant barrier to care. With regard to the issue of independence, men may want to preserve their preillness identities as autonomous adults, and relying on their families for care may have threatened this self-perception (Hays, Magee, et al., 1994). Issues related to individuation are likely to be problems not only for gay men with HIV/AIDS but also for any young adult who experiences a chronic illness that results in dependence on the family of origin (Rolland, 1994). Men also indicated that relationship problems were a barrier to obtaining help. This confirms earlier research that found that families may behave in ways that are perceived as unhelpful (Hays, Chauncey, et al., 1990; Hays, Magee, et al., 1994; Johnston et al., 1995).
A significantly higher level of barrier was experienced in obtaining help from fathers than siblings. A significantly higher level of barrier was experienced in regard to relationship issues in relation to fathers than siblings. Although fathers may be more difficult to approach for help because of conflicts over sexual orientation and HIV status, earlier research suggests that gay men with HIV/AIDS experience communication about sexual orientation and HIV status with siblings as less threatening than with parents (Cain, 1991; Frierson, Lippmann, & Johnson, 1987; Shelby, 1995). Research indicates that men perceive the risk of rejection by siblings resulting from disclosure as less devastating than rejection by parents (Cain, 1991). In addition, siblings may have a long history as friends and intimates, thus encouraging communication (Cain, 1991). Thus, in comparison to fathers, siblings may be perceived as easier to approach for help.
IMPLICATIONS FOR PRACTICE
Caution should be exercised in generalizing the findings of this study to the population of gay men with HIV/AIDS and their families of origin because the findings are not based on a random sample of the population. Nevertheless, the findings are suggestive of several implications for social work practitioners.
The study suggests that although family members do not provide a high level of support for gay men with HIV/AIDS, as the illness progresses men rely to a greater extent on their families for help, but they also continue to experience barriers to obtaining support. One intervention that has been found to be effective in helping families of origin become educated about, and learn skills for more effective caregiving, is the psychoeducational group intervention (Pomeroy, Rubin, & Walker, 1996). Family members participating in such groups have been provided with information about the health care delivery system, social services, financial programs, and the medical and nutritional needs of PWAs. These groups also function as a context for recognizing and learning how to handle anger, guilt, and blame constructively (Pomeroy et al., 1996). Families who have a better understanding of HIV/AIDS and their own reactions to the illness also may be able to offer support in a manner that is not as threatening to a man's independence. Psychoeducational groups are particularly effective with family members of PWAs because they relieve isolation and stigma by providing members with access to social support and with a context in which to normalize their own experiences through identification with other group members (Pomeroy et al., 1996; Rolland, 1994).
Mothers and siblings were identified as the primary caregivers in this survey. Research (McShane, Bumbalo, & Patsdaughter, 1994) has documented levels of depression, anxiety, anger, and guilt among parents and siblings of PWAs that are higher than normative community samples on the Brief Symptom Inventory. Social workers providing services to the family of origin of gay PWAs should be aware of the need to assess whether family members - particularly mothers and siblings - are experiencing these symptoms and provide appropriate intervention.
Finally, the study suggests that social workers providing services to the families of gay PWAs should be aware of the fact that some fathers may be isolated or disengaged from other family members. It may be advisable, with the consent of the PWA, to reach out to these fathers to involve them in discharge planning, counseling, and support groups. Fathers who are able to resolve some of their conflicted feelings about HIV and homosexuality may be able to assume a more active role as a supportive parent to their gay son with HIV/AIDS.
Future research should replicate this study with a larger sample of African American and Hispanic gay men with HIV/AIDS and their families of origin to provide information about patterns of support and barriers in these communities.
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ABOUT THE AUTHOR
Goldie Kadushin, PhD, is associate professor, School of Social Welfare, University of Wisconsin-Milwaukee, P. O. Box 786, Milwaukee, WI 53201; e-mail: email@example.com. An earlier version of this article was presented at HIV/AIDS '98: Social Work Response, May 1998, New Orleans.
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|Publication:||Health and Social Work|
|Article Type:||Statistical Data Included|
|Date:||Aug 1, 1999|
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