2011. Vol.2, No.4, 318-322
Copyright © 2011 SciRes. DOI:10.4236/psych.2011.24050
A Qualitative Study of HIV Treatment Adherence Support from
Friends and Family among Same Sex Male Couples
Support for HIV Medication Adherence from Friends and Family
Scott Stumbo, Judith Wrubel, Mallory O. Johnson
University of California, San Francisco, USA.
Received February 16th, 2011; revised March 21st, 2011; accepted April 27th, 2011.
HIV-positive individuals seek support for medication adherence from a variety of sources—spouses, family and
friends. We conducted a qualitative study of twenty same sex male couples where we asked men to give narra-
tives of support received for medication adherence from their partner, family and friends. Men in couple rela-
tionships did not routinely seek tangible or practical assistance for adherence from friends and family but almost
exclusively from partners. These men did seek and receive informational and emotional support from friends
and family. These results have implications for designing interventions for medication support when an individ-
ual is in a relationship.
Keywords: Social Support, Gay Couples, Antiretrov i ral Adherence, HIV/ AIDS
Social support through social networks provide logistical and
emotional support that is seen as beneficial across many disease
contexts (Berkman & Syme, 1979; Kulik & Mahler, 1989;
Lewis & Rook, 1999). The same has held true in studies of
coping with HIV and HIV medication adherence (Ammassari
et al., 2002; Catz, Kelly, Bogart, Benotsch, & McAuliffe, 2000;
Murphy, Marelich, Hoffman, & Steers, 2004; Power et al.,
2003). Less, however, is known about how gay men in couples
support one another around HIV medication adherence and less
still is known about how gay men in couples seek or receive
support from family and friends in their social network. In this
paper we specifically explore the offering and receipt of sup-
port from friends and family when an individual on HIV medi-
cations also has a primary partner.
Two major aspects of social support we explore are the type
of support (of what does the support consist) and the source
(who is providing the support). The types of support are gener-
ally categorized as 1) tangible/practical/aid, 2) emotional/af-
fective, and 3) informational (Dakof & Taylor, 1990). Sources
of support include 1) partners/spouses, 2) parents, 3) other fam-
ily, 4) friends, and 5) health care workers (Nott, Vedhara, &
Power, 1995). The type of support may be classified as either
perceived available support or actual received support.
Some previous studies have focused on the intersection of
type and source of support (DiMatteo, 2004; Hamilton, Raz-
zano, & Martin, 2007; Primomo, Yates, & Woods, 1990).
However, quite often researchers combine the sources of sup-
port into an overall measure of generalized (often perceived)
support. This approach does not allow for analysis based on the
specific source of support (Newell, Baral, Pande, Bam, & Malla,
2006; Revenson, Schiaffino, Majerovitz, & Gibofsky, 1991;
Walley, Khan, Newell, & Khan, 2001). This in turn can poten-
tially dilute findings about social support. For example, when
recent studies involving an “important family member” found
conflicting evidence for social support in tuberculosis medica-
tion adherence, how are we to assess whether the intervention
would have been differently affected if the important family
member was a spouse versus a parent versus a sibling (Newell
et al., 2006; Walley et al., 2001)? Within HIV support literature
too, this type of aggregating occurs, as when friends and inti-
mate partners are combined as “peers” (Derlega, Winstead,
Oldfield, & Barbee, 2003), or partners and blood relatives as
“family” (Vandehey & Shuff, 2001).
Spouses/partners are thought to play a particularly important
role in providing social support. Generally thought to be the
most important relationship (Revenson, 1994), and therefore a
cornerstone of support provision, the evidence has produced
decidedly mixed results (Ridder, Schreurs, & Kuijer, 2005;
Martire, Schulz, Keefe, Rudy, & Starz, 2007). A meta analysis
of literature involving family support during chronic illness
found that interventions which involved only spouses did
somewhat better than those that involved “mixed family” in the
intervention (Martire, Lustig, Schulz, Miller, & Helgeson,
2004), thereby highlighting the need to measure the sources of
support independently. As for analyses looking specifically at
non-partner sources of support, the data is either not disaggre-
gated enough to answer specific questions about non-partner
sources (Derlega et al., 2003; Vandehey & Shuff, 2001) or the
literature shows a range of results (Kimberly & Serovich,
Previous research has argued that gay men tend to rely on
their peer social networks more than heterosexuals (Nott et al.,
1995). One reason given for this is that men may have strained
relationships with family (Hays, Chauncey, & Tobey, 1990;
Kadushin, 1999; Kurdek & Schmitt, 1987). However, others
have noted that though the partner is extremely important in
coping with HIV, that gay men, too, like heterosexual couples,
often find support from the partner to be problematic and view
friends’ support at times more positively (Haas, 2002). There is
not enough work yet in the field of support for HIV medication
adherence among gay couples to know how distinct sources of
social support—partners, peers and family—may have different
influences on medication adherence.
Our goal for this paper is to explore the types of support for
antiretroviral medication adherence reported by gay couples
that they receive from sources in their social network other than
their partners. We previously enumerated the daily support
practices for adherence by partners among co-residing gay cou-
ples (Wrubel, Stumbo, & Johnson, 2008, 2010). In that work
we outlined the numerous and diverse ways in which HIV+
seroconcordant and serodiscordant couples offer support for
HIV medication adherence. In this paper we explore both per-
ceived and received support from family and friends, as distinct
from the provision of support by partners.
This study draws on data from the first phase of the Duo
Project, a three-phase study of how relationship dynamics in-
fluence HIV medication adherence. In the first phase, from
December 2006 to March 2007, 20 gay male couples were re-
cruited for one in-depth interview about their relationship, their
health care practices and HIV medication adherence issues.
Eligible participants were 18 or older, had been in a rela-
tionship and co-residing for a minimum of 3 months, and at
least one of the men had to be HIV+ and on an acknowledged
antiretroviral medication (ART) regimen for the past 30 days or
more. Couples were recruited from local HIV care newsletters,
referrals from other studies, HIV clinics and gay venues. Flyers
were used to advertise the study, and interested persons were
instructed to call the study telephone for more information and
for screening. The telephone screening was used to confirm
eligibility criteria, and eligible couples were scheduled for the
The two individuals in each couple were interviewed simul-
taneously but separately and were asked about their relationship,
general health issues, HIV treatment, and medication adherence
practices and support for adherence from the partner and others
in the social network. Participants were asked to respond to
questions generally but were also asked to provide a narrative
of a specific recent event. The interview protocol was devel-
oped based on relationship and treatment adherence literatures.
Questions included items about how many members of their
network knew of their HIV status and medication regimens,
what (if any) support they provided around mediation-taking,
and whether they said or did things that were unhelpful in their
medication taking.
Narrative data were audio recorded then transcribed for
analysis. Transcribed interviews were entered into ATLAS.ti, a
software program for the management and analysis of narrative
Qualitati ve Analysis
As a first step, we used a team-based approach to developing
codes and coding the narratives (Fernald & Duclos, 2005;
MacQueen, McLellan, Kay, & Milstein, 1998). The three team
members began the analysis of the narrative data with broad
questions: what are the couple dynamics around medication
adherence practices? What kinds of support for HIV adherence
are others in the social network offering? The team read the
narrative accounts repeatedly with these questions in mind,
articulated more specific questions based on these close read-
ings, and developed codes that reflected what was said in the
interviews. Codes were further refined into index codes to de-
marcate themes and marker codes to note the presence of ac-
tions, attitudes, feelings, and experiences that were relevant to the
study questions (MacQueen et al., 1998; Seidel & Kelle, 1995).
The qualitative team developed the coding protocol using in-
terviews from five couples (i.e., 10 individual interviews) as no
new codes emerged from the narratives and the codes were
judged to be saturated (Bowen, 2008). The completed codebook
included the codes, definitions of each code, and an exemplar
of each code from a narrative. The remaining cases were coded
by one team member and verified by the other two. Disagree-
ments were resolved through discussion until 100% consensus
was reached. For this analysis, we focused on the data which
indicated support from non-partners. This data was coded into
the commonly described categories of tangible, emotional and
informational so as to be able to speak to current literature more
The sample included ten HIV + seroconcordant and ten sero-
discordant couples. The mean age was 48.7 and the couples had
been together an average of 9.8 years. See Table 1 for further
demographic descriptive statistics.
Relational partners in our sample offered a wide range of all
types of support for medication adherence (Wrubel et al., 2008).
Men did not report receiving much tangible support from other
social network members (see Table 2). Our goal is to describe
support for adherence received from family and friends in the
social network, including the importance of affective and in-
formational support, and data from a group who believed that
medication adherence was too personal to discuss outside the
Affective Support
We found a lack of specified tangible support sought or re-
ceived from non-partner social network members. In contrast,
the amount of affective support was highlighted as particularly
useful and comforting to participants. For those who do not
currently feel that they need tangible support for adherence, or
who receive that support from their partner, men still report
knowing that they can emotionally count on others as a valu-
able form of support. Almost half the sample indicated a per-
ceived availability of affective support from friends and family,
or an actual instance of emotional support for HIV medication
I: And do your friends do anything that helps or supports
you around being HIV-positive?
P: Nothing that I could pinpoint other than being, you know,
I know that I have friends that I could rely on if I ever needed to
talk or […to] visit me in the hospital. (Ppt 019-1)
Men did not just seek or receive affective support from
friends. For those with good relationships with their families,
Table 1.
Sample Characteristic s.
Age—mean years (SD) 48.7 (9.0)
Race/Ethnicity—n (%)
6 (15.0)
28 (70.0)
4 (10.0)
2 (5.0)
Education—n (%)
<HS graduate
HS graduate
Technical training or two years of college
College graduate
Advanced de gree (MA/MS/PhD /JD/MD)
3 (7.5)
8 (20.0)
13 (32.5)
10 (25.0)
6 (15.0)
Annual Personal Income—n (%)
$20,000 - $39,999
$40,000 - $59,999
$60,000 or more
24 (60.0)
5 (12.5)
5 (12.5)
6 (15.0)
HIV-positive 30 (75.0)
Months on Anti-Retrovira l Medications—mean (SD) 83.8 (82.6)
Antiretroviral Medication Adherence %*—mean (SD) 96.5 (9.3)
Couple relationship length in months— mean (SD) 119.4 (88.3)
Couple length of time living together i n months—mean (SD) 106.1 (88.0)
Notes: N = 40 for all variables except months on meds and adherence scores (N =
30). *Adherence measured with a Visual Analog Scale from 0 - 100 cm; results
are then scored as a percent (Walsh et al., 2002).
Table 2.
Mentioned types of support by so urce. Sample n = 40.
Tangible Informational Affective
Friends 3 9 11
Family 2 3 6
Total 5 12 17
we found that families could also be an important source of
affective support.
I: Do these people [friends, family, etc.] do anything that
helps or supports your partner around being HIV-positive?
P: Direct support? Not a whole lot. I mean hes my partner.
Hes a member of the family. So I would say a lot of the support
they would give him is in just treating him normally. You know
he is a partner and a member of the family and, you know, they
just treat him as anyone would be treated. And thats pretty
much it. (Ppt 019-2)
Informational Support
If tangible support from friends and family was low, infor-
mational support, like affective support, was heavily endorsed
and appreciated by participants. The most common source of
informational support was friends. Most importantly, informa-
tional support from other HIV+ friends was common and en-
P: Yeah. Its like when we have a certain rash or a certain
thing thats happening, [] then we look at it and say, Oh that
probably is because of that, or probably is because of this, why
dont you take this? Cause my doctor gave me this because I
have the same thing and, you know, ask your doctor’.” And
sometimes when I go to my doctor I say, Hey, I need this, be-
cause my friend has something similar and --” [] Because we
are in the same boat. [] With a guy or person who is negative,
we cannot talk about, you know, nightmares, we cannot talk
about sweats, we cannot talk about meds or doctors, cause
they dont know. (Ppt 020-2)
* * *
P: [L]ike I said, its like the HIV club. You know its like
theyre a member too. [] [E]very once in a while [] well
discuss side-effects, and what meds youre on, and Oh, I was
on that one and I couldnt deal with that one, honey. That one
made me so ill. You know? And well, well girl talk about
what this one did, and what that one did, and where you ever
on this one. [] Its like pill talk. [] Its kind of a comradery
of drugs, you know, what works for you, what doesnt work for
you, are you on the same thing Im on [...]. Because a lot of
guys, especially in the chorus, were on very close to the same
cocktail, you know, because our numbers are pretty close to the
same. (Ppt 046-2)
This type of informational support may be particularly im-
portant in HIV serodiscordant couples, where the HIV-negative
partner may have less direct personal experience with HIV
medications. The description below is from an HIV-negative
participant regarding his partner’s sources of support:
P: Well I know C. does have a couple good friends who he
keeps in contact with who are, you know, a very good source of
information in terms of, you know, whats going on in terms of
like research or like if a new drug comes out, you know, theyre
very on top of—you know one of his good friends whos down
in L.A. is always sending out e-mails in terms of whats going
on with HIV and AIDS in terms of like whether it be legislation
or whether it be like drugs in the pipeline or that sort of thing.
(Ppt 029-2)
Though friends, particularly other HIV+ friends, provided
the bulk of informational support, family could also be a source
of support. No one in the sample reported a fellow HIV+ family
member, and thereby no family member had the intimate
knowledge of HIV-related issues as HIV+ friends did. This did
not, however, necessarily preclude informational assistance
from family. Both members of one couple reported that one of
their sisters consistently provided informational support in the
form of internet information:
P: They [family, friends, etc.] are very supportive. Like my
sister-in-law, she, whenever some new drug [comes out], she
looks it up on the internet just to see what kind of side effects
and whatnot it is. (Ppt 023-1)
And his partner says:
P: You know, so I told her [about my new meds] and then
she goes right straight to the Internet [] and looked up eve-
rything and the side effects. So she knew the side effects before
I even knew, before I got the printout from the pharmacy what
possible side effects are. (Ppt 023-2)
We dont really get into that
For five men, the thought of asking for or receiving support
for HIV medication adherence outside the partnership seemed
almost unthinkable. The topic of being HIV+ or of taking
medications was seen as too sensitive to involve others, be they
family or friends. For these men, discussions of side effects,
medication changes, or other adherence issues happened only
with the partner, not other social network members.
This was particularly true for HIV-negative men in our sam-
ple, perhaps feeling protective of their partners:
I: Who among these people [friends, family etc.] know that
your partner is HIV positive?
P: Its none of their business. (Ppt 05-1)
* * *
P: I guess its more of a privacy thing, []. So you have to
be good friends, I guess, to really talk about that kind of stuff,
thats pretty personal. And I, and I guess people that are on the
meds take it just as personally as somebody that was doing
cancer treatments, you know, whether or not they want to talk
with somebody about their chemo or the pills theyre taking, or
something. Cause its not really something you want to dwell
on all the time with everybody’. (Ppt 044-2)
Gay men in couples draw on many sources for support.
However, they access different sources for different types of
support. Our work extends earlier findings on the relevance of
friends as an important source of support for gay men (Haas,
2002; Hays, Catania, McKusick, & Coates, 1990). Among gay
men coping with HIV and managing HIV medication adherence,
studies have sometimes shown an equal reliance on “peers”
—partners and friends (Hays, Catania et al., 1990; Hays,
Chauncey et al., 1990). Our work provides less support for
concluding that partners/spouses were more likely to provide
emotional support, and that partners and friends provided tan-
gible support equally (Dakof & Taylor, 1990). Partners are the
primary source of tangible support in the lives of those who
have them (Haas, 2002; Revenson, 1994).
This study is based on a relatively small sample; the study
was designed to elicit narratives of support from partners and
other sources. The sample had overall high adherence, and
therefore lacked variation in need for support. Poor adherers
may access support in their social network differently than
HIV+ individuals with relatively good adherence, or may lack a
substantive network altogether.
The current findings support the importance of primary rela-
tionships in the role of social support and treatment adherence.
There is a rich literature establishing the role of primary part-
ners in the adoption and maintenance of health promoting or
health compromising behaviors. Findings suggest that when
there is a primary partner, opportunities for adherence related
support from other people may be restricted or not sought.
From a relationship theory perspective, the findings have im-
plications for further exploring the role of different types of
relationships on health-related social support.
Future quantitative survey work could explore the provision
of support for medication adherence more systematically from
all social network members. As tangible support was recently
reported to be the most important element in adherence, it is
particularly important to note the sources of that form of sup-
port (Rueda et al., 2006). Future intervention development
would be served by focusing on detailed assessments of the
sources of social support. For HIV+ individuals who have
partners or spouses, interventions focusing on tangible assis-
tance in addition to emotional support may be warranted. For
HIV+ individuals without a primary partner, interventions
could focus on enhancing affective and informational support
from friends and family, or encourage the development of tan-
gible assistance seeking from family and friends. Future inter-
ventions based on better understandings of the sources of sup-
port needed by couples who are HIV+ concordant or serodis-
cordant could help with adherence support and better clinical
Ammassari, A., Trotta, M. P ., Murri, R., Castelli, F., Narciso, P., Noto,
P., et al. (2002). Correlates and predictors of adherence to highly ac-
tive antiretroviral therapy: Overview of published literature. Journal
of Acquired Immune Deficien c y Syndromes, 31, S123-127.
Berkman, L. F., & Syme, S. L. (1979). Social networks, host resistance,
and mortality: A nine-year follow-up study of Alameda County resi-
dents. American Journal of Epidemiology, 109, 186-204.
Bowen, G. A. (2008). Naturalistic inquiry and the saturation concept: A
research note. Qualitative Research, 8, 137-152.
Catz, S. L., Kelly, J. A., Bogart, L. M., Benotsch, E. G., & McAuliffe,
T. L. (2000). Patterns, correlates, and barriers to medication adher-
ence among persons prescribed new treatments for HIV disease.
Health Psychol, 19, 124-133. doi:10.1037/0278-6133.19.2.124
Dakof, G. A., & Taylor, S. E. (1990). Victims’ perceptions of social
support: What is helpful from whom? Journal of Personality and So-
cial Psychology, 58, 80-89. doi:10.1037/0022-3514.58.1.80
Derlega, V. J., Winstead, B. A., Oldfield, I. E., & Barbee, A. P. (2003).
Close relationships and social support in coping with HIV: A test of
sensitive interaction systems theory. AIDS Behav, 7, 119-129.
DiMatteo, M. R. (2004). Social support and patient adherence to medi-
cal treatment: A meta-analysis. Health Psychology, 23, 207-218.
Fernald, D. H., & Duclos, C. W. (2005). Enhance your team-based
qualitative research. Annals of Family Medici n e, 3, 360-364.
Haas, S. M. (2002). Social support as relationship maintenance in gay
male couples coping with HIV or AIDS. Journal of Social & Per-
sonal Relationships, 19, 87-111. doi:10.1177/0265407502191005
Hamilton, M. M., Razzano, L. A., & Martin, N. B. (2007). The rela-
tionship between type and quality of social support and HIV medica-
tion adherence. Journal of HIV/AIDS & Social Se r v i c e s , 6 , 39-63.
Hays, R. B., Catania, J. A., McKusick, L., & Coates, T. J. (1990).
Help-seeking for AIDS-related concerns: A comparison of gay men
with various HIV diagnoses. American Journal of Community Psy-
chology, 18, 743-755. doi:10.1007/BF00931240
Hays, R. B., Chauncey, S., & Tobey, L. A. (1990). The social support
networks of gay men with AIDS. Journal of Community Psychology.
Special Issue: AIDS and the community, 18, 374-385.
Kadushin, G. (1999). Barriers to social support and support received
from their families of origin among gay men with HIV/AIDS. Health
& Social Work, 24, 198-209.
Kimberly, J. A., & Serovich, J. M. (1996). Perceived social support
among people living with HIV/AIDS. American Journal of Family
Therapy, 24, 41-53. doi:10.1080/01926189508251015
Kulik, J. A., & Mahler, H. I. (1989). Social support and recovery from
surgery. Health Psychol, 8, 221-238. doi:10.1037/0278-6133.8.2.221
Kurdek, L. A., & Schmitt, J. P. (1987). Perceived emotional support
from family and friends in members of homosexual, married, and
heterosexual cohabiting couple s . Journal of Homosex, 14 , 57-68.
Lewis, M. A., & Rook, K. S. (1999). Social control in personal rela-
tionships: Impact on health behaviors and psychological distress.
Health Psychology, 18, 63-71. doi:10.1037/0278-6133.18.1.63
MacQueen, K. M., McLellan, E., Kay, K., & Milstein, B. (1998).
Codebook development for team-based qualitative analysis. Cultural
Anthropology Methods, 10, 31-36.
Martire, L. M., Lustig, A. P., Schulz, R., Miller, G. E., & Helgeson, V.
S. (2004). Is it beneficial to involve a family member? A meta-
analysis of psychosocial interventions for chronic illness. Health
Psychol, 23, 599-611. doi:10.1037/0278-6133.23.6.599
Martire, L. M., Schulz, R., Keefe, F. J., Rudy, T. E., & Starz, T. W.
(2007). Couple-oriented education and support intervention: Effects
on individuals with osteoarthritis and their spouses. Rehabilitation
Psychology, 52, 121-132. doi:10.1037/0090-5550.52.2.121
Murphy, D. A., Marelich, W. D., Hoffman, D., & Steers, W. N. (2004).
Predictors of antiretroviral adherence. AIDS Care, 16, 471-484.
Newell, J. N., Baral, S. C., Pande, S. B., Bam, D. S., & Malla, P. (2006).
Family-member DOTS and community DOTS for tuberculosis con-
trol in Nepal: Cluster-randomised controlled trial. Lancet, 367,
903-909. doi:10.1016/S0140-6736(06)68380-3
Nott, K. H., Vedhara, K., & Power, M. J. (1995). The role of social
support in HIV infection. Psychological Medicine, 25, 971-983.
Power, R., Koopman , C., Volk, J., Isr aelski, D. M., Ston e, L., Chesney,
M. A., et al. (2003). Social support, substance use, and denial in rela-
tionship to antiretroviral treatment adherence among HIV-infected
persons. AIDS Patient Care and STDS, 1 7, 245-252.
Primomo, J., Yates, B. C., & Woods, N. F. (1990). Social support for
women during chronic illness: The relationship among sources and
types to adjustment. Research in Nursing & Health, 13, 153-161.
Revenson, T. A. (1994). Social support and marital coping with chronic
illness. Annals of Behavioral Medicine, 16, 122-130.
Revenson, T. A., Schiaffino, K. M., Majerovitz, S. D., & Gibofsky, A.
(1991). Social support as a double-edged sword: The relation of posi-
tive and problematic support to depression among rheumatoid arthri-
tis patients. Socia l Science & Medicine, 33, 807-813.
Ridder de, D. T. D., Schreurs, K. M. G., & Kuijer, R. G. (2005). Is
spousal support always helpful to patients with asthma or diabetes?
A prospective study. Psychology & Health, 20, 497-508.
Rueda, S., Park-Wyllie, L. Y., Bayoumi, A. M., Tynan, A. M., Anto-
niou, T. A., Rourke, S. B., et al. (2006). Patient support and educa-
tion for promoting adherence to highly active antiretroviral therapy
for HIV/AIDS. Cochrane Database System Review, 3, CD001442.
Seidel, J., & Kelle, U. (1995). Different functions of coding in the
analysis of textual data. In U. Kelle (Ed.), Computer-dided qualita-
tive data analysis: Theory, methods, and practice. Thousand Oaks,
CA: Sage.
Vandehey, M. A., & Shuff, I. M. (2001). HIV infection and stage of
illness: A comparison of family, friend, and professional so-
cial-support providers over a 2-year period. Journal of Applied So-
cial Psychology, 31, 2217-2229.
Walley, J. D., Khan, M. A., Newell, J. N., & Khan, M. H. (2001). Ef-
fectiveness of the direct observation component of DOTS for tuber-
culosis: A randomised controlled trial in Pakistan. Lancet, 357,
664-669. doi:10.1016/S0140-6736(00)04129-5
Walsh, J. C., Mandalia, S., & Gazzard, B. G. (2002). Responses to a 1
month self-report on adherence to antiretroviral therapy are consis-
tent with electronic data and virological treatment outcome. AIDS, 16,
269-277. doi:10.1097/00002030-200201250-00017
Wrubel, J., Stumbo, S., & Johnson, M. O. (2008). Antiretroviral medi-
cation support practices among partners of men who have sex with
men: A qualitative study. AIDS Patient Care & STDS, 22, 851-858.
Wrubel, J., Stumbo, S., & Johnson, M. O. (2010). Male same sex cou-
ple dynamics and support for HIV medication adherence: The ques-
tion of received social support. Journal of Personal and Social Rela-
tionships, 27, 553-572. doi:10.1177/0265407510364870