AIDS and family caregivers

International Journal of Nursing Studies 38 (2001) 209±225

www.elsevier.com/locate/ijnurstu

Telephone support group intervention for persons with hemophilia and HIV/AIDS and family caregivers Miriam J. Stewart a,*, Geraldine Hart a, Karen Mann b, Susan Jackson c, Lynn Langille c, Marie Reidy d a Faculty of Nursing, University of Alberta, Edmonton, AB, Canada Department of Medicine, Dalhousie University, Halifax, Nova Scotia, B3H 3J5, Canada c Atlantic Health Promotion Research Centre, Dalhousie University, Halifax, NS, Canada B3H 3J5 d School of Nursing, University of Montreal, Montreal, Quebec, Canada H3C 3J7 b

Received 4 August 1999; received in revised form 27 October 1999; accepted 23 December 1999

Abstract The purpose of this pilot project was to test the feasibility of a telephone support group intervention for persons with hemophilia and HIV/AIDS and for their family caregivers. Their support needs were unique because they did not identify with predominant groups of persons with AIDS and were geographically dispersed from peers. The 12 week intervention involved separate telephone support groups for hemophiliacs and for family caregivers. The two groups, comprised of a predetermined maximum of six people, were co-led by a professional and a peer. The support group for family caregivers involved six people and the group for men with hemophilia included ®ve people, including one peer facilitator and one professional facilitator in each group. The telephone support group discussions were taped, transcribed, and analyzed for prevalent themes. The peer and professional facilitators maintained weekly ®eld notes. All participants reported that the telephone groups had a positive impact on meeting their support needs. They believed that they had bene®tted from sharing information and that the support groups had decreased their feelings of isolation and loneliness. Participants, however, contended that the intervention should be longer than 12 weeks. 7 2001 Published by Elsevier Science Ltd. Keywords: Hemophilia; HIV/AIDS; Family caregivers; Support groups; Loneliness; Coping; Stress

1. Introduction The World Health Organization predicts that the number of adults and children infected with human immunode®ciency virus (HIV) will triple from 9±11 million to 30±40 million by the year 2000 (World Health Organization, 1991). Persons with hemophilia,

* Corresponding author. Tel.: +1-780-492-9413.

who were infected by tainted blood prior to 1985, are now HIV positive or have developed AIDS. Fifty percent of persons with hemophilia in the USA have been infected with HIV (Hall, 1994); while in Canada, HIV/ AIDS has a€ected at least 40% of the country's estimated 2300 hemophiliacs (Canadian Hemophilia Clinic Directors Group, 1993; Dunn, 1993). This group of boys and men are supported predominantly by family caregivers, and live in traditional nuclear families (Smith and Rapkin, 1996). Several studies (e.g., Hart

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et al., 1991; Lamping, 1991) depict the loneliness and social isolation experienced by persons with AIDS (PWA) and their family caregivers. 2. Literature review 2.1. Support needs The literature reveals that loneliness may stem from support de®ciencies and unmet support needs. Most PWA have few sources of close support (Smith and Rapkin, 1996). Moreover, some PWA are forced to relocate to seek support from family members, such as elderly parents (Ellis and Muschkin, 1996). Numerous barriers to support for PWA include interpersonal costs, negative interactions, fear of disclosure (Smith and Rapkin, 1996), social stigma, and inadequate access, acceptance and intimacy. Furthermore, survivors may be emotionally exhausted; remove themselves from non-supportive relationships once diagnosed (Johnston et al., 1995); and, be unwilling to use support services (Wight et al., 1995). These obstacles to support are problematic because persons with lifethreatening illnesses, such as AIDS, who experience less satisfaction with social support in conjunction with more severe stressors are more vulnerable to emotional distress (Servellen et al., 1996). Family caregivers of PWA also su€er from support de®cits. In one study, family caregivers of children with HIV/AIDS reported low social support which diminished caregiving impact and competency (Hughes and Caliandro, 1996). AIDS has a devastating e€ect on the support resources and network structure of con®dants of PWA (Jankowski et al., 1996). Consequently, family caregivers have unmet support needs (Wight et al., 1995). The literature on social support and AIDS focuses primarily on the homosexual population and virtually overlooks hemophiliacs with HIV/AIDS and their family caregivers. 2.2. Support group interventions Although support interventions can decrease con¯ict, create new sources of support (Barrera, 1991), or alleviate social isolation (Maguire, 1991), interventions for PWA are rare. Moreover, the few support interventions focus on two high-risk populations; homosexuals and intravenous drug users (Rounds et al., 1991). Earlier studies were generally post-hoc descriptions that documented the value of existing support groups for PWA from the perspective of the professionals involved (e.g., Child and Getzel, 1990; Gambe and Getzel, 1989; Ribble, 1989). More recent evaluations of existing support groups for PWA revealed a positive

impact on adherence to treatment, psychological symptoms (Weishut, 1996), sense of purpose, ecacy, and mutuality (Sandstrom, 1996). Given that most studies have focused only on existing support groups, intervention studies that test di€erent formats and mechanisms are timely. Four recent support group intervention studies pertinent to PWA were directed at professional caregivers (Lego, 1994), bereaved caregivers (Sikkema et al., 1995), PWA in residential settings or half-way houses (Daniolos, 1994), and HIV-infected donors (Cleary et al., 1995). None addressed the support needs of hemophiliacs with HIV/AIDS or their family caregivers. Furthermore, these four interventions were based more heavily on education, information, and cognitive behavioural coping models than support. All groups were facilitated by professionals only and were conducted face-to-face. However, face-to-face groups may not suit the needs of PWA who are geographically and socially isolated. Telephone support groups can link isolated people. 2.3. Telephone support interventions Telephone support interventions have been conducted with family caregivers of Alzheimer's patients (Goodman, 1990; Goodman and Pynoos, 1988, 1990), physically disabled adults (Evans et al., 1984), gay men and lesbians (D'Augelli, 1989), and low-income elderly women (Heller et al., 1991). Telephone support lines have also been used as vehicles to identify developmental and gender di€erences in children's support needs (Kliewer et al., 1990; Peterson, 1990). The advantages of telephone support are its anonymity, and its ability to bring people together who are unable, geographically or logistically, to participate in a face-to-face group. Support can be given and received without risk. Peer telephone networks have resulted in signi®cant gains in support satisfaction, perceived support for caregiving, and information (Goodman and Pynoos, 1990). Rounds et al. (1991) developed a program of telephone support for rural-dwelling PWA; preliminary results reveal evidence of increased information and support (Rounds et al., 1995). No telephone support group interventions have addressed the unique support needs of hemophiliacs with HIV/AIDS and their family caregivers. 3. Preliminary study of support needs We previously conducted a nationally-funded study that examined AIDS-related stresses, coping strategies, social support, and support needs experienced by men with hemophilia and HIV/AIDS (n = 30), family caregivers of hemophiliacs with HIV/AIDS (n = 23), and

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bereaved family caregivers (n = 17). The initial phase entailed individual interviews and the second phase involved questionnaires based on themes elicited from the initial interviews. This study of the support needs of HIV-infected hemophiliacs and their family caregivers revealed prejudice, isolation/avoidance, unfair comparisons with others, and loss of con®dentiality which ampli®ed their loneliness and decreased their self esteem and social contact (Stewart et al., 1995). Fear of the stigma of AIDS often kept respondents from seeking needed social support. Support groups of peers in the same situation (i.e., persons with hemophilia and HIV/AIDS, or their family caregivers) was reported as the greatest support need. Participants did not identify with predominant groups of PWA. Furthermore, the geographical dispersement of many respondents in rural areas and their expressed need for con®dentiality limited accessibility to face-to-face support groups. In contrast to support groups reported in the literature which were led by professionals only, 74% of respondents preferred joint professional±peer leadership. Based on ®ndings from this preliminary study of support needs, accessible telephone support groups, co-led by a peer and a professional, were developed for hemophiliacs with HIV/ AIDS and for family caregivers. 4. Research questions for support intervention study This paper describes the ®ndings from a pilot study designed to test the feasibility of a telephone support group intervention for hemophiliacs with HIV/AIDS and for their family caregivers. The research questions guiding the pilot intervention study were: 1. What stressful situations and coping strategies are discussed in telephone support groups for hemophiliacs with HIV/AIDS and for family caregivers? 2. What sources of support do participants identify? 3. What types of support are provided by the telephone support groups? 4. What are the mediating support processes in telephone support groups? 5. What are participants' perceptions of the impact of the telephone support intervention?

5. Conceptual framework for support intervention study Social support is conceptualized as interactions, with family members, friends, health professionals and peers, that communicate information, reliable alliance, aid and esteem (i.e., informational, emotional, instrumental, and armational support)

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(Stewart, 1993). Social support and coping are mediators of the stress process associated with AIDS (Pearlin et al., 1988). Coping strategies, both problem-focused and emotion-focused, can in¯uence the type and quality of support received and the maintenance of social relationships (Pearlin, 1991). Social support, in turn, can improve coping, moderate the impact of stressors (Heller, 1990), promote health, and alleviate isolation and loneliness (Maguire, 1991) (Fig. 1). Loneliness is a subjective, unpleasant experience resulting from perceived de®ciency in social relationships or relational provisions. Rook (1990) claimed that loneliness is ``an enduring condition of emotional distress that arises when a person feels estranged from, misunderstood, or rejected by others and/or lacks appropriate social partners for desired activities, particularly activities that provide a sense of social integration and opportunities for emotional intimacy''. Supplementary social support can prevent and redress emotional and social loneliness. Loneliness, conceived as an indicator of mental health, should be decreased by the indirect impact of the telephone support group on the stress associated with HIV/AIDS and caregiving (Fig. 1). Three mediating support processes were anticipated within the telephone support groups (Fig. 1). The process of social comparison occurs in mutual aid support groups, and in¯uences emotions and coping e€ectiveness (Gottlieb and Selby, 1989). Although norms of equity or social exchange suggest that support should be bidirectional or reciprocal, the ill frequently encounter non-egalitarian, non-reciprocal relationships (Tilden and Galyen, 1987). Support reciprocity has been associated with diminished loneliness (Rook, 1990) and with improved wellbeing (Maton et al., 1989) in support group members. Social learning theory posits that people's perceptions of their capabilities (self-ecacy) a€ect their behaviour, thinking and emotional reactions in stressful situations and that personal and situational in¯uences alter coping behaviour (Bandura, 1986). According to social learning theory, people assimilate new knowledge better when it is presented by peers, because they can identify with someone who shares a common experience (Borkman and Shubert, 1995). Peers, acting as role models, can exchange experiential knowledge in support groups. Support is needed to overcome the stigma associated with AIDS, to bolster self esteem, to gain a sense of control, and to reduce loneliness. Support groups can accomplish this through comparison with peers, through enhanced situation-speci®c ecacy, and through two-way exchange that reduces feelings of indebtedness and dependency.

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6. Methodology for support intervention study

6.1. Purpose and rationale for intervention The type of intervention Ð a telephone support group Ð was the same for hemophiliacs with HIV/ AIDS and for family caregivers because both a€ected men and caregivers lived in geographically isolated areas and expressed the need for peer support groups in the preliminary study of support needs. Given that they reported distinct stressors, separate telephone groups were created for a€ected men and for family caregivers. Within each group, participants were free to discuss whatever topics they wished with their peers (i.e., people in similar situations). These groups were created for provision of diverse types of support Ð informational, armational and emotional Ð and were not primarily educational, in contrast to previous interventions reported in the literature. These three types of support were conveyed by peer and professional facilitators and by group members during the telephone discussions.

6.2. Study design The men with hemophilia and the family caregivers participated in weekly support groups, conducted by teleconference. The intervention was 12 weeks long, to attempt to overcome problems associated with the brevity of telephone support interventions reported for other populations. The telephone support group for hemophiliacs with HIV/AIDS and the group for family caregivers were co-led by a professional and a peer, as suggested by the participants in the preliminary needs assessment study. Based on recommendations in the literature concerning optimum group size for telephone support, the predetermined maximum size of each group was ®ve members and one professional facilitator. The peer facilitator was chosen from among the group members. There were ®ve people in the group for men with hemophilia and six in the group for family caregivers, including the professional and peer facilitators. 6.3. Facilitator training The professional facilitator was a mental health

Fig. 1. Conceptual framework for support intervention.

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nurse with experience in facilitating support groups. The peer facilitators of both groups were actively involved in the Canadian Hemophilia Society. A distinct advantage of co-leadership, beyond shared control, is the merging of experiential knowledge and professional knowledge. In this study, co-leadership

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was promoted by a 4-hour orientation session. The trainer had extensive experience conducting training sessions for other social support interventions and expertise in group facilitation and telecommunication technology. During training, particular attention was paid to how personal beliefs might a€ect the facilita-

Table 1 Revised facilitator guide Potential topics Group needs and support intervention . Ground rules . Practical issues about teleconferencing . Intervention outcomes and processes . Desired topics . Format and content Disease and treatment options . Evolution of AIDS . Stages of illness . Stressors . Coping and support Making health care systems work

Practical support needs

Preventing contagion

Coping with illness stressors

Managing negative interactions and behaviours of others

Disclosure versus con®dentiality

Disrupted family functioning and communication problems

Social isolation Bereavement (new topic)

Sample references Anderson and Shaw (1994) Field and Shore (1992) Lego (1994) Mayers and Spiegel (1992) Aronstam et al. (1993) Canadian Hemophilia Clinic Directors Group (1993) Eyster et al. (1993) Berk et al. (1995) Cleary et al. (1992) Field and Shore (1992) Rutkowsky (1994) Dunn (1993) Hays et al. (1994) Rounds et al. (1991) Semple et al. (1993) Bor et al. (1993) Chorba et al. (1993) Markova et al. (1990) Mayes et al. (1992) Folkman et al. (1994) Frierson et al. (1987) Miller et al. (1989) Roth et al. (1994) Wilkie et al. (1990) Aaronson (1990) Brown and DeMaio (1992) Hays et al. (1994) Osborne et al. (1995) Brown and DeMaio (1992) Hall (1994) Mansergh et al. (1995) Perry et al. (1994) Bor et al. (1993) Cohen et al. (1995) Roth et al. (1994) Semple et al. (1993) Getzel and Mahoney (1989) Hall (1992) Brown and Powell-Cope (1993) Daugherty (1993) Field and Shore (1992) Getzel and Mahoney (1989) Richmond and Ross (1994)

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tors' ability to interact with participants; ways to use personal strengths to assist others; and, strategies for building group members' competence. The training session addressed: (1) the purpose and intended outcomes of the telephone support groups; (2) the responsibilities of participants; (3) the nature, scope and sequencing of topics for discussion; (4) strategies for handling process issues; (5) complementary roles of peer and professional facilitators; (6) documentation of support processes; (7) follow-up of individual members' support needs; and, (8) operational matters involving the use of telephone technology. Simulated situations and role playing were used to practice group facilitation techniques. During the training session, the facilitator guide was introduced. 6.4. Facilitator guide A document consisting of background information and pertinent references for each of the twelve sessions was developed using input from sta€ in hemophilia clinics, needs expressed in the earlier assessment study, and the literature (see Table 1). This guide only suggested topics that could be covered during group discussions. Potential topics for discussion included current treatment options, navigating health care systems, preventing contagion, coping with illness stressors, disclosure versus con®dentiality, help/support seeking, family functioning, and isolation/loneliness. This document was sent to nurses and social workers in HIV/AIDS care and to AIDS researchers for feedback. During the ®rst support group session, participants were asked to provide feedback on the suggested content and format, and recommend additions and amendments to the proposed topics which re¯ected their priority support needs. Furthermore, participants were free to discuss the topics of their choice in all sessions. 6.5. Participant recruitment and selection criteria Participants were recruited initially through the hemophilia clinics in four hospitals in di€erent sites in Quebec, the Hemophilia Association, and newspapers. The nurses working in the hemophilia clinics gave information about the project to hemophiliacs who were HIV-infected and to parents of HIV-infected children. Participants in the support group for PWA (n = 3) met the following inclusion criteria: (1) males with hemophilia and HIV/AIDS; (2) 18 years of age or older; (3) functional status did not preclude participation (e.g., deafness or dementia); and, (4) access to a non-party telephone line. Participants in the family caregiver group (n = 4) could be male or female. The inclusion criteria for family caregivers were: (1) living in the same home as a person who had hemophilia

and HIV/AIDS; (2) 18 years of age or older; (3) functional status did not preclude participation; and (4) access to a non-party telephone line. 6.6. Informed consent The study was approved by the Ethics Committee of the university and by clinics/agencies from which participants were recruited. The project coordinator obtained verbal consent by phone and mailed out consent forms prior to the ®rst telephone session to acquire written consent. The potential participants were informed that they could decline or withdraw from the study at any time. To protect con®dentiality and anonymity of ®ndings, all data were held in con®dence, coded, and stored in a secure place. Only group data and anonymous quotes were reported. 6.7. Teleconference procedure The professional facilitator contacted participants to determine a mutually agreeable time for conducting each telephone support group session. The telephone operator called the individual members to link them to each teleconference session. Group members received written information about teleconferencing and instructions for rejoining the teleconference if they had to leave for part of a meeting or were accidentally disconnected. 6.8. Support group sessions Facilitators were trained to use the facilitator guide only as a suggested outline of potential topics, and to encourage participants to freely discuss any topic of their choosing. Both professional and peer facilitators urged group members to voice their experiences and concerns. Sessions were originally scheduled for 45 min. The sessions for the men who had hemophilia and HIV/ AIDS ranged from 76 to 122 min and lasted on average 102 min. The caregiver group sessions ranged from 79 to 153 min and the mean length was 105 min. 6.9. Preparation for termination The facilitators were trained to prepare for termination. The facilitator's guide included suggestions for long-term coping strategies and for other sources of social support outside of the group. Facilitators guided members in their discussion of future strategies for support seeking and continuing contact. 6.10. Data collection and analysis The telephone support group discussions were taped

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by the telephone company, and transcribed and translated by a bilingual graduate student, as the groups were conducted in French. The professional and peer facilitators recorded ®eld notes following each session. The guide for the ®eld notes included speci®c questions pertaining to key topics/issues discussed, social learning, social comparison, reciprocity, leadership, and factors in¯uencing the success of the session. The facilitators contacted participants individually between sessions if there were any issues requiring monitoring such as absence and documented reasons for dropouts or missed sessions, their contact with members between sessions, members' interactions with each other between sessions, and other intervening processes. Following the intervention, participants were interviewed individually by telephone; 13 open-ended questions elicited their perceptions of shared leadership, group member input, mediating support processes, continuing contacts/interactions with other member(s), the impact of the intervention, and satisfaction with the intervention. Following the intervention, the peer and professional facilitators were interviewed jointly. The nine-item interview guide focused on facilitators' roles, contributions, communication, and partnership, and on the advantages and disadvantages of co-leadership. In summary, four sources of qualitative data were collected: facilitators' ®eld notes, transcripts of the taped telephone discussions, taped individual interviews of participants, and a taped joint interview of facilitators. These data were subjected to content analysis of themes and sub-themes. A framework was created from categories of themes that emerged from the data: (1) primary demands of caregiving (e.g., physical care); (2) secondary demands of caregiving (e.g., e€ects on family); (3) stressful situations associated with illness for PWA; (4) sources of support (e.g., peers); (5) types of support (e.g., informational); (6) appraisal of support (e.g., helpful); (7) coping strategies (e.g., support seeking); (8) support group processes (e.g., social learning); and (9) impact of intervention (e.g., bene®ts). This framework was guided by the conceptual foundation but open to new themes. Each category and subcategory was de®ned clearly to inform judgements about the right category for each unit of analysis. The categories in the framework met several criteria: inclusive (i.e., re¯ected range of content in data); useful (i.e., meaningfully connected to data); mutually exclusive (i.e., separate and independent); and clear and speci®c. To assure that the coding was as free from bias as possible and that it could be replicated, the reliability of unitizing the data (selecting the data elements for coding) and coding the units according to the category system was assessed by checking inter-rater agreement between two indepen-

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dent coders who had been trained in the system of analysis. The results of the thematic content analysis for each telephone support group (caregivers and hemophiliacs) were compared. [Note: The quantitative data and analysis are reported in a separate paper (Stewart et al., 2000).] 7. Pro®le of participants in support intervention study The three participants in the hemophiliac support group were males in their early thirties (range 32±34; mean=33 years), and lived in di€erent rural areas. Only one man was single and only one had children; these children were not HIV-positive. The number of people in their households ranged from one to ®ve. Although these men were infected with HIV in the mid-eighties, their physical health remained ``fairly good'' in their view. The highest CD count was 70. Symptoms covered the spectrum of fatigue, skin problems, herpes, white blotches, pain, and liver malfunction. The men were all in ``blue collar'' jobs. The family caregivers were not related to the men with HIV/AIDS in the other group. This strategy was intended to keep the support groups distinct, to avoid potential contamination, and to foster comfortable and con®dential discussion. Only one of the four family caregivers was male. All caregivers were in conjugal (i.e., married, common-law) relationships. The number of people in caregivers' households ranged from three to ®ve. Two caregivers were spouses and two were parents of hemophiliacs with HIV/AIDS. The parents were in their ®fties, whereas the spouses were in their thirties. Caregivers had known for 9±10 years that their spouse or child had been infected with HIV. 8. Findings from support intervention study The results of the content analysis of the transcribed teleconference sessions, the facilitators' diaries, and the post-intervention interviews of participants and facilitators are presented under the headings of stressful situations, coping strategies, sources of social support, types of support provided by the intervention, mediating support processes, and perceived impact of the intervention. The common and unique themes in the hemophiliac and caregiver groups are summarized in Table 2. 9. Stressful situations discussed in telephone support groups The taped discussions in the telephone support groups and the facilitators' diaries revealed that men

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with HIV/AIDS and family caregivers experienced stresses associated with negative social attitudes, inadequate information, interactions with formal systems, and isolation. 9.1. Negative social attitudes The men with HIV faced the stress of the widespread stigma, fear, ignorance and avoidance that the spectre of AIDS provokes. The men attempted to reduce ignorance about HIV, and spoke openly about their own illness. Sometimes, however, they found the constant necessity to explain stressful. . . . having to deal with it day after day is depressing. At times it doesn't bother you, but other days you just don't want to have to go through the whole explanation; you don't want to talk about it. Family caregivers also recounted incidents involving ignorance and stereotyping and were critical of media representations of HIV/AIDS. There is always the assumption that it is a homosexual disease. It doesn't matter how someone gets it, they still need the same kind of support. Like our guys, they did nothing to get it. I ®nd the attitude frustrating.

9.2. Inaccessible and inadequate information The men with hemophilia and HIV/AIDS wanted to understand their condition and the products and medications with which they were treated. They reported an urgent need to keep abreast of research. Inaccessibility of information was considered stressful. The ®nancial cost of information contributed to its inaccessibility. Furthermore, the men found information inadequate and/or inaccurate. Similarly, caregivers expressed anger and frustration regarding insucient and unreliable information from the health system. 9.3. Stressful encounters with health and social service systems The men contended that the health and social service systems, which they believed should help them by providing information and support, failed to do so. Moreover, they experienced lack of respect and rejection. Dealing with di€erent layers of complex and bureaucratic systems frequently created stress. The HIVinfected men identi®ed cutbacks and inadequate ®nancial support and compensation as the key sources of system-induced stress. These men believed that nonpro®t health organizations did not advocate on their behalf.

Table 2 Summary of themes

Stressful situations

Coping strategies

Social support Sources Types Impact of Intervention

Both groupsa

A€ected men

Family caregivers

Negative social attitudes Inadequate, inaccessible information Dealing with health/social systems Isolation Talking with others who understand (EF) Advocacy (PF)

Illness treatment Financial strain Injustice Advocacy Positive attitude (EF) Seeking information (PF)

Monitoring relative's health Dealing with relative's reactions Impact on family Personal needs Expressing anger (EF) Labelling emotions/concerns (EF)

Enhanced communication

Increased con®dence

Protective bu€ering (RF) Support group members (peers) Support group facilitators Family Armational Informational Emotional Satisfaction of emotional support needs Satisfaction of informational support needs Enhanced coping Reduced isolation

a

Sharing caregiving stresses (RF)

Improved interactions with natural network

EF Ð Emotion-focused coping; PF Ð Problem-focused coping; RF Ð Relationship-focused coping.

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. . . you are dealing with a government organization . . . you are at the end of your rope. You have tried everything. You reach a point that you want to tell them o€ over the phone . . . Then, when you start to talk a bit louder, to disrupt things, what do they do? They hang up on you. For the past ®ve years I have been watching what our government has been doing, and it is very worrisome. We are going into misery. . .We are deteriorating and it is not good to see . . . It is just an added stress. You not only have to battle against your illness, but you have to battle against the system to get your regular needs met. Caregivers expressed anger at the circumstances surrounding the infection of their family members. They believed that available services did not respond to their own needs or the needs experienced by their infected relatives and other family members. Caregivers recounted stressful incidents regarding bad blood products and product recalls. Due to inconsistent government support, medications were started and stopped. Caregivers' anger at the health care system was sometimes directed toward speci®c health professionals. It's still happening. In July he got some medication and in August they told us we had to bring some back. He went to see the doctor, but the doctor gave him no medicine. He coughs and coughs and coughs. It doesn't make sense. He's just leaving him to die.

9.4. Isolation The participants reported that their cause was considered marginal within the organizations intended to help hemophiliacs or PWA. They expressed feelings of isolation from these ``helping'' organizations. The a€ected men and caregivers identi®ed unique issues that di€ered from those experienced by the majority of the HIV/AIDS and the hemophiliac populations. As the population of HIV-infected hemophiliacs was diminishing, it was dicult to attract attention to their situation. Geographical isolation generated stress because participants could not connect with others in similar circumstances who were dispersed in rural settings. The lifestyle changes and restrictions that accompanied the illness also created social isolation. The men could no longer participate in some sports or work activities. Forming new relationships was dicult. The one a€ected male who was single poignantly expressed the loneliness that his illness had imposed:

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. . . dreaming about the ®rst 25 years of my life. I compare the ®rst 25 years and the last seven years. Loving someone, being loved by someone. Since then, frankly . . . The analysis of the transcripts for the men's teleconference sessions and the facilitators' diaries revealed stresses associated with their illness and treatments, ®nancial strain, and injustice.

9.5. Illness and treatment Hemophiliacs infected with HIV must bear the stress of multiple illnesses and treatments. Persons with both hemophilia and HIV/AIDS encountered the physical and emotional stress of frequently changing medications and treatments. I was hospitalized about four years ago, and I was put next to someone who had a cough . . . I asked the nurse whether he had pneumonia. . . and I told her that in the past two years about forty of my friends had died from it, and that I was scared. She spoke to the doctor and I got a new room. It wasn't to prevent the other man from catching AIDS, but to prevent me from catching pneumonia.

9.6. Financial strain Financial diculties emerged as another constant stress for participants. In Quebec, hemophiliacs with HIV receive $30,000 a year which does not cover the combined costs of living and treatment. If you are in bad health, that is when it is expensive. I ®gure it costs about $30,000 or $40,000 for the last six months of your life, to get a nurse and all that.

9.7. Injustice and advocacy The a€ected men had become activists, working on behalf of infected hemophiliacs to promote public awareness of injustices and to increase ®nancial support. There was little organizational support for their e€orts, and mixed response from the media. For me, it is absolutely clear that they knew they were giving us dangerous products. It is this element of consciousness that makes the di€erence.

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Although their advocacy work was liberating, it created stress by imposing a physical and emotional toll on men whose health was fragile. Some participants found that the public pro®le of the activist was also stressful for their families. It's easier for me to ®ght the illness than them . . . What makes me sick is to ®ght the system. If I got ®nancial compensation, I wouldn't have to ®ght anymore. During the telephone support group discussions, the family caregivers of males with both hemophilia and HIV/AIDS eloquently described the primary demands of managing their ill relative's health and reactions, and the secondary impact on their personal needs and on the family unit.

9.8. Monitoring ill relatives' health Monitoring the physical health of their family members was a constant and stressful aspect of caregiving. Caregivers also expressed concerns about and actively monitored their relative's emotional health. We have to worry daily about the blood they receive. Is it good? Is it bad? I can't really say that he is good shape. He has no energy. He has no enthusiasm for anything. I hope his spirits improve.

9.9. Dealing with ill relative's reactions Caregivers attributed some PWA's reluctance to discuss their illness to the circumstances surrounding HIV infection. Caregivers were constrained from discussing the illness and its related injustices in their families and in public because they respected the wishes of their relative with HIV/AIDS concerning disclosure. He never wants to talk about it with people. They will bring it out in their own time, and I think we must respect that. While it may be dicult for us to not talk about it, it must come from them.

ships. Indeed, family caregivers worried about their other relatives' reactions to this serious illness. There are those who can't take too much at one time. They have to have it doled out in little doses.

9.11. Personal needs of caregivers Caregivers also talked about their inability to accept the circumstances surrounding their relatives' infection with HIV, their personal feelings of isolation, and their faltering hopes for the future. Although the emotional concerns of caregivers were paramount in group discussions, the impact of caregiving on their physical health (e.g., weight loss) was also mentioned. I think I'm losing hope more than he is. . .You always have to have it, but sometimes it's hard on morale.

9.12. Summary Both hemophiliacs with HIV/AIDS and family caregivers reported stresses associated with social stigma and public indi€erence, inadequate and inaccessible information, insucient support from the formal health system and from health professionals, and isolation. While the a€ected men found the illness and its treatment stressful, the caregivers discussed stresses associated with monitoring and managing the health and reactions of their ill relative, the e€ect of the illness on family members, and the impact of caregiving on their personal needs. (Table 2)

10. Coping strategies discussed in telephone support groups During their group discussions, the a€ected men and the family caregivers reported using a wide array of emotion-focused, problem-focused, and relationshipfocused coping strategies to manage the stresses of living with HIV/AIDS. 10.1. Emotion-focused coping

9.10. Impact on family Caregivers recognized the devastating e€ects of the HIV infection on family members and family relation-

The a€ected men talked privately (to peers and loved ones) and publicly (in an advocacy role) about their feelings. In their opinion, non-disclosure was an ine€ective coping strategy. These men articulated the importance of maintaining a hopeful, positive attitude.

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They also coped by engaging in enjoyable activities that enabled them to ``step outside'' their illness. In each misfortune that has arisen, I have tried to ®nd something to laugh about. I heard that [I was infected with HIV] in 1989, but I think it was even my nature before then. . .But I have been able to step outside the context of HIV and have fun, laugh. Family caregivers' emotion-focused strategies for coping included ``living one day at a time,'' discussing the reactions of relatives to the illness, and ``labelling'' their emotions and concerns. Their expressions of anger Ð at the system, at inattention to their needs, and at circumstances surrounding the infection Ð served as a springboard for problem-focused coping strategies. One that I know of that I never talked about it is my brother (who is now severely ill with AIDS). He never spoke to anybody about it. Finally he had to talk about it. It didn't make things worse for him. In contrast, it was liberating.

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discussion and shared problem solving in close relationships. 10.4. Summary Members of both groups expressed emotions, kept informed, relied upon humour, advocated, and used protective bu€ering as strategies to cope with HIV/ AIDS (see Table 2).

11. Sources of support identi®ed during telephone discussions Participants discussed support provided by members of their social networks. The men's few comments about wives, mothers, or friends indicated that they were enduring sources of support. Similarly, caregivers received support from a variety of sources; in particular family. My mother encourages me always. She says ``You will be like me, you will be strong''.

10.2. Problem-focused coping The men expended considerable time and energy on seeking current information about their illness and relevant initiatives. Both the a€ected men and the family caregivers took advantage of advocacy opportunities. Caregivers also supported the advocacy e€orts of their children and spouses. Within the health system, caregivers negotiated the care of their relatives with hemophilia and HIV/AIDS.

10.3. Relationship-focused coping Both the men and the caregivers engaged in ``protective bu€ering''. The caregivers tried to protect the HIV-infected relative and the family from outsiders who expressed negative attitudes. Similarly, the men tried to protect their families. To illustrate, one of the HIV-infected men described his strategy for managing the stress that his public pro®le created for his wife: I do it for her. I know when she is feeling ill at ease. There are many people that see me and assume that my wife is the same. It is important that I make the clari®cation. There was less evidence of ``active engagement'', a relationship-focused coping strategy that entails open

12. Types of support provided by telephone support groups Group members and facilitators provided armational, informational, and emotional support. 12.1. Informational support The most frequent sources of information were members of the telephone support group and the professional facilitator. In addition to verbal information, the professional facilitator provided the group members with written materials on treatment options. At the request of group members, guest experts occasionally joined the groups to provide informational support; these guest speakers included prominent AIDS activists and a writer. The HIV-infected men bene®ted from explanations about treatments and symptoms, and from guidance on interacting with the system. Indeed, these men reported that they had acquired new knowledge from the telephone support groups. What have I learned? Oh, a lot of things. A lot of things regarding the history of contaminated blood. I learned as well Ð something that the medical community doesn't furnish us with Ð about various infections . . .We have learned a lot about medications, ways to treat various things.

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Caregivers exchanged information which they had received from other health professionals; discussed strategies for obtaining medications and ®nancial support; suggested alternative ways of coping; and, shared information about community resources. We learn a lot [about the side e€ects of medication]. It is not something that the doctors would tell us.

12.2. Armational support Positive feedback and encouragement were exchanged among group members during the teleconferences. The professional facilitator frequently o€ered positive appraisal, a form of armational support. As the professional facilitator indicated: I admire people like you who are ®ghters, who take your life in your own hands. There are many people who have trouble doing that.

13. Mediating support processes in telephone support groups Although social comparison was evident in these support groups, social exchange and social learning processes predominated.

13.1. Social exchange The reciprocity of exchanging information and experiences was an important ingredient in the successful functioning of the support groups. The facilitators and members expressed feelings of equality and valued the mutual aid in groups. I think that we all gave a lot, but we learned a lot, also. I got the feeling that we were all on equal ground, and that we were free to talk about everything to others who understand us and are living through the same thing.

13.2. Social learning 12.3. Emotional support Although the men appreciated the informational support communicated in the group, emotional support was most important in their view. In the postintervention interviews, they frequently stressed the signi®cance of di€erent types of emotional support: listening, sharing feelings and experiences, expressing solidarity, and trusting. . . . That there were resources available, that people were there for us. There were people we could trust. [We] didn't believe in it at the beginning. Caregivers appreciated sharing their feelings and experiences, having the opportunity to laugh and talking with others who could understand and empathize with their situations. That is what people don't understand, and that is why there needs to be dialogue among ourselves because it isn't something that you can talk to everybody about. Someone can understand you only if someone has the same thing as you.

Experiential knowledge o€ered by group members and peer facilitators complemented information relayed by the professional facilitator. Both professional and experiential types of knowledge were shared in these telephone support groups. 14. Participants' perceptions of impact of intervention During the post-intervention interviews, participants reported high levels of satisfaction with the support groups. They also indicated that they were impressed with the impact of the intervention on their support needs, coping, loneliness, communication, relationships, and con®dence. 14.1. Satisfaction of support needs By providing the opportunity for communication, the groups enhanced the emotional support experienced by participants. In their view, sharing stories and experiences was supportive. There was a lot of sharing. Everybody took the time to listen to everybody else. It can't get any better than that with regard to meeting one's needs. You know that there are people there that will take the time to listen to what you have to say.

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In the post-intervention interviews, both the a€ected men and caregivers expressed great satisfaction regarding informational support provided by the telephone groups. Further, they noted that much of the information they received through the intervention was not available elsewhere. Problems with respect to opportunist illness, because everyone has had their own health problems. What are the symptoms, what is it, how does one live with it? All these little things. [Note: The quantitative data revealed a statistically signi®cant increase in total support satisfaction.]

14.2. Coping mobilized Participants reported that, as a direct result of the intervention, they employed coping strategies such as seeking information and communicating their views to the media. The men planned to write a book about their experiences as HIV-infected hemophiliacs. One man indicated that the information and emotional support provided by the group enhanced his ability to cope with the stress of public life: More con®dent, to be able to express yourself, to know you're not alone . . . And the way to do things, I understand more. No one can stop me from saying what I want to say, and that way I feel more con®dent. Caregivers also reported that they had been mobilized into action based on knowledge gained in the group. They also sought support more selectively following the intervention. My son has been hospitalized and, based on some of the things we have discussed, I have asked certain questions to the doctors and the nurses. I think that it has helped in this instance.

14.3. Decreased isolation and loneliness In the post-intervention interviews, participants con®rmed that the telephone support groups helped to decrease their feelings of isolation and loneliness. They felt less alone because other people, who understood their situation, provided information and emotional and armational support. Whenever there was something to say we could share it with the group. It was like a family on the telephone line.

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[Note: The quantitative results revealed decreases in social and emotional isolation and social and emotional loneliness following the intervention, although these changes were not statistically signi®cant, probably because of the small sample size.] 14.4. Enhanced communication and relationships The men reported that the support group enhanced their frequency of communication with other people. Furthermore, they maintained regular contact with each other between teleconferences. Although caregivers had lived with the stress of HIV for about 10 years, they believed that their involvement in the support groups had a positive impact on their relationships with family members. I spoke to [family member] about it. Each time there was a conference during which I learned something, I would mention it to him.

14.5. Increased con®dence Caregivers reported that their con®dence in their personal knowledge and skills had increased through participation in the support groups. It has made me feel more con®dent. I have found that those who participated with me were very competent, knew a lot, and I learned a lot.

14.6. Duration of the intervention The sole negative factor a€ecting the impact of the intervention, according to the a€ected men and the family caregivers, was the termination of the groups after 12 weeks. All participants expressed a desire to maintain communication and were disappointed that the intervention ended. Caregivers exchanged phone numbers and planned to arrange a face-to-face meeting for their group. I don't know what I'm going to do when this over, because I'd really like to continue this. I've really enjoyed it.

14.7. Summary Participants believed that the intervention met their support needs through information, empathy, encour-

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agement, and communication. In their view, the support provided by the groups had decreased their isolation and improved their coping and con®dence. 15. Discussion This pilot project indicated that a telephone support group was feasible and suitable for these men with hemophilia and HIV/AIDS and their family caregivers who lived in rural settings. The model of shared peer and professional facilitation was successful. According to the facilitators' ®eld notes and the transcribed telephone sessions, both professional and peer facilitators encouraged group members to voice their experiences. Facilitators' feedback during the post-intervention interview revealed that the training session anticipated issues that arose during the support group sessions and suggested appropriate strategies. Group discussions were augmented by appropriate techniques and resources (e.g., expert consultants, written information). Following the termination of the intervention, the facilitator's guide (which re¯ected issues identi®ed by hemophiliacs and family caregivers in the early assessment study) was revised according to more recent literature and additional topics raised by group members during the teleconference sessions. The major addition pertained to bereavement. The updated and modi®ed guide is available as a resource for future telephone support groups for related populations. The themes in the taped sessions closely resembled the topics in the facilitator's guide, although the ordering and emphasis di€ered. To illustrate, the men focused more on ``managing/dealing with the system''. As indicated earlier, the participants provided initial input into the proposed topics, and were free to discuss topics of their choice in all sessions. The facilitators typically suggested topics from the facilitators' guide only when themes did not emerge spontaneously from the group members. According to review of the transcribed telephone sessions by research assistants, the facilitators introduced potential topics for the group's consideration primarily in the initial few sessions. As the level of comfort within the support groups developed, the participants directed the selection of discussion themes. Indeed, the men with hemophilia and AIDS quickly assumed control of the introduction of topics of importance to them. Nevertheless, there may have been some potential for ``bias'' in topic coverage and determination of agenda. Types of support (i.e., emotional, instrumental, information, armation) should be speci®c to stressful situations (Cutrona, 1990). The support o€ered by these telephone support groups frequently focused on stressful situations experienced by participants and on

relevant coping strategies and resources. For example, the participants regularly shared their knowledge about AIDS, current treatments, and available resources (i.e., informational support) to deal with information-related stress. Armational support was o€ered frequently with respect to system-related stress. Emotional support helped participants to deal with isolation-related stress. In this study, a support group was created to supplement the depleted, strained networks of hemophiliacs with HIV/AIDS and family caregivers. Participants reported that the telephone intervention enhanced their support and diminished their isolation and loneliness. Solomon et al. (1990) concluded that support promotes mental health indirectly through its impact on loneliness. The fact that discussions lasted much longer than the predetermined hour re¯ected the hemophiliacs' and caregivers' paramount needs for peer support. Future group sessions could be scheduled for a longer time slot (e.g., 2 hours) depending on the health of participants and other factors such as cost. In this context, ®nancial support or reduced conference call rates could be sought from telephone company competitors. As participants wanted groups to continue beyond the 12 weeks and support group interventions for other populations tested by our research team consistently point to the need for expanding their duration, future groups could meet over a lengthier period (e.g., 1 year). Gottlieb (in press) con®rms the importance of suitable intervention duration and dose; in the context of chronic stressful situations such as illness and caregiving, short-term interventions are rarely sucient. Given the indications of the positive impact of the intervention in the encouraging qualitative and quantitative results, a randomized control trial should be mounted. Similar telephone support groups could also be tested in randomized control trials for geographically or socially isolated family caregivers of children infected with HIV from other causes or for persons infected with HIV/AIDS through the health systems' treatment of other pre-existing conditions.

Acknowledgements The authors are grateful for grants received from National Health Research Development Program (NHRDP) and Canadian Foundation for AIDS Research (CANFAR) for this project. We are indebted to the expert assistance from Alexandra Hirth, the Coordinator for the Social Support Research Program.

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