Net-positives: the value of networks and social support for women living with HIVadmin
Net-positives: the value of networks and social support for women living with HIV
HIV Australia | Vol. 12 No. 1 | March 2014
By Jayne Russell
JAYNE RUSSELL explains how personal networks can provide support opportunities for HIV-positive women.
Australia has a comparatively low HIV prevalence rate (115 per 100,000 of the population) with over 80% concentrated in the sub-population of men who have sex with men (MSM).1
In 2009, an estimated 10–12% of MSM in Australia were living with HIV.2 Given this concentration, prevention programs have been consistently targeted to MSM via localised gay community organisations, venues and media; however, this focus has meant that there is a paucity of HIV-related services, knowledge and experience of HIV in the general population.3
Women living with HIV constitute less than 10% of the HIV population.4
These women largely reside within the broader Australian population with understandings and meanings of HIV informed through the negative stereotypes and discourses of blame that have characterised people living with HIV in Australia since the beginning of the HIV epidemic.5 6 7
These factors have implications for service provision.11 12 In terms of medical services, women use different healthcare services to men for HIV and non-HIV care:13 they require gynaecological services for themselves and healthcare services for their families that are likely to be unfamiliar with HIV.14 15
Furthermore, unwanted disclosure of HIV and unfavourable treatment by healthcare staff have been found to limit the opportunities for women to engage positively with services – both HIV services and mainstream health care.16
These barriers mean that women with HIV are unlikely to know other HIV-positive women. In addition, despite facing added layers of HIV-related stigma and conflict in everyday and healthcare settings, and despite difficulties accessing HIV services, the needs of women with HIV attract inadequate resources for intervention and support strategies.
This is of particular concern given that physical health can be seriously compromised when an individual’s access is restricted to smaller and less diverse social networks,17 and there is a strong case to strengthen intervention and support strategies that assist in building resilience in the personal networks of HIV-positive women.
Social support, social relations, HIV disclosure and social networks
For women with HIV, partners, children and family members are the most likely important sources of social support.18
Importantly, social support and positive health outcomes are contingent on disclosure of positive HIV status to a range of network members: participants of the Australian HIV Futures Six survey rated their sources of support as more supportive if they had disclosed their positive HIV status to them.24
Other studies have found that social support was associated with disclosure to friends but not to family;25 to network members who are believed to be HIV-positive;26 to intimate partners, followed by friends, with family the least likely to be told.27 28 29
However, not all social relationships are positive. Negative social interactions are consistently and strongly related to negative health outcomes.30 31 32 33 Social relations between individuals are also the building blocks of social networks34 that in turn influence social support.35 36
Network phenomena produces network effects above and beyond the sum of the effects of the individuals in the network.39
My PhD research
My PhD research project explores the value of network effects and positive and negative social supports within various networks of women living with HIV.
Networks where everyone knows each other reflect a closed network – this type of network can produce trust and coordinated action for support amongst the network members but equally produces pressure to conform and restricts access to diverse social resources.40 41
Alternatively, networks with no connections between network members reflect no potential for coordinated support from others, but do maintain control of social information such as HIV positivity.
Networks with some, but not full connections, link people from outside the network with new information that is otherwise not available within the network and also permit some coordination of resources and trust.
To conduct my research, I travelled to three Australian states in 2009 and 2010 and interviewed 60 HIV-positive women, most in person and a few by phone.
The interviews ranged from 30 minutes to three hours. I collected detailed data including demographic, HIV and general health information in two self-reporting questionnaires and social network data by structured interview.
For the social network information I asked each woman to nominate up to 12 people important to them who they had been in contact with in the past month.
I then asked for information about each nominated network member, the type and content (including conflict and social supports) of relationships that they had with each of these network members and the type of relationship and extent of conflict, if any, that the network members had with each other.
The demographic diversity of the population of women living with HIV in Australia was reflected in the 60 women I interviewed.
They ranged in age from 22 to 70 years with a median of 40 years of age; 57% were born in Australia and 43% overseas including nine from African countries and three from South East Asian countries; 22% had a university level education, a quarter had not completed secondary school, with the remainder having some level of qualification; 45% reported professional occupations, 32% unskilled and 23% reported no profession; 42% were working, a third were not and the remainder were either studying or engaged with home duties full-time.
Just over half these women reported very good or excellent health and fewer than 50% reported poor, fair or good health; the time since HIV diagnosis ranged from six months to 27 years (average = 10 years), one quarter had been diagnosed with AIDS and 12% reported a history of hepatitis C.
The 60 women interviewed nominated a total of 467 network members; 60 of these were less than 18 years of age. Of the 467, 40% were family members, 29% friends, 15% healthcare providers, 12% intimate or ex-intimate partners and 4% were co-workers.
The networks ranged in size from three to 12 network members (average = eight) and they ranged in density from 0.084 (almost no connections between the network members) to one (100% of network members knew each other). The average density was 0.6 (60% of network members knew each other).
This study participant was between 30–49 years of age and had recently migrated to Australia. She worked part-time, and received additional income support from the government.
She was diagnosed with both HIV and AIDS in regional Australia six months prior to the interview. This participant reported good health with no other illnesses.
Of the nine network members, there were three women healthcare providers, three women friends, one male HIV-positive peer and two family members (sister and mother).
The sister and mother knew each other and the healthcare workers knew each other; all the others were only connected to the study participant. However, there was no support given by the family members.
This network was homophilous42 with regards to ethnicity and gender: except for the healthcare workers, all network members were of the same ethnicity and except for the HIV peer, all network members were women.
Of note, this participant had recently migrated which is associated with ethnically homophilous networks that have limited access to diverse social resources.43
Because of this ethnic and gender homophily, the social interactions in this network will be more predictable which is important in times of crisis.44
Also evident in this network, was the role of social support as an incentive to the disclosure of HIV-positive status and alternatively, conflict as a disincentive to disclosure.
Two of the network members unaware of the participant’s HIV positivity were friends. One was a five-year friendship with weekly contact, a lot of conflict and no support; the other participant had known the participant for one year and was in regular contact; there was no conflict but also no social support.
Additionally, family members provided no support in this network. The participant received no social support from her mother and sister and she reported conflict with both of these relationships although she provided them with emotional, informational and practical assistance.
Overall, maintaining these family relations was a burden and negatively impacted the total amount of social support this study participant received from her personal network.
This study illustrates how individual and HIV health characteristics, network factors, patterns of disclosure of HIV positivity, the type of social relation and negative relating shape women’s experience of living with HIV – particularly opportunities for social support.
Having regard to these network characteristics in development of HIV and mainstream health services may provide a way to increase equity and facilitate social wellbeing for women living with HIV.
1 The Kirby Institute. (2012a). HIV, viral hepatitis and sexually transmissible infections in Australia Annual Surveillance Report 2012. The Kirby Institute, University of New South Wales, Sydney.
2 The Kirby Institute, et al. (2012b). Global AIDS Progress Report: Country Progress report 2012 Australia. UNAIDS, Geneva.
3 Sendziuk, P. (2003). Learning to Trust: Australian Responses to AIDS. University of New South Wales Press, Sydney.
4 The Kirby Institute, (2012a), op. cit.
5 Lawless, S., et al. (1996). Dirty, diseased and undeserving: the positioning of HIV positive women. Social Science and Medicine, 43(9), 1371–1377.
6 Sendziuk, P., (2003), op. cit.
7 Persson, A., Newman, C. (2008). Making monsters: heterosexuality, crime and race in recent Western media coverage of HIV. Sociology of Health & Illness, 30(4), 632–646.
8 Grierson, J., et al. (2003). Victorian Networks Study Technical Report: Method, Sample and Preliminary Findings. Monograph Series Number 44. Australian Research Centre in Sex Health and Society (ARCSHS), La Trobe University, Melbourne.
9 Koelmeyer, R., et al. (2010). HIV Futures 6: Making positive women’s lives count. Monograph Series Number 77. ARCSHS, La Trobe University, Melbourne.
10 The Kirby Institute, (2012a), op. cit.
11 Grierson, J., et al., (2003), op. cit.
12 Carman, M., et al. (2010). Trends in the location of the HIV-positive population in Australia: Implications for access to healthcare services and delivery. Sexual Health, 7(2), 154–158.
13 Thorpe, R., et al. (2008). Gender differences in patterns of HIV service use in a national sample of HIV-positive Australians. AIDS Care, 20(5), 547–552.
14 Koelmeyer, R., et al., (2010), op. cit.
15 Koelmeyer, R., et al. (2012). Beyond the data: distinct features and experiences of women living with HIV in Australia. HIV Australia, 9(4).
16 Koelmeyer, R., et al., (2010), op. cit.
17 Berkman, L., Syme, L. (1979). Social networks, host resistance, and mortality: A nine year follow-up study of Alameda County residents. American Journal of Epidemiology, 109, 186–204.
18 Grierson, J., et al. (2009). HIV Futures 6: Making Positive Lives Count. Monograph Series Number 74. ARCSHS, La Trobe University, Melbourne.
19 Agneessens, F., et al. (2006). Diversity in social support by role relations: A typology. Social Networks, 28(4), 427–441.
20 Barbee, A., et al. (1998). Helpful and unhelpful forms of social support for HIV-positive individuals. In Derlega, V., Barbee, A. (eds). (1998). HIV and Social Interaction. Sage, Thousand Oaks. 83–105.
21 Casale, M., et al. (2013). “They give us hope”: HIV-positive caregivers’ perspectives on the role of social support for health. AIDS Care – Psychological and Socio-Medical Aspects of AIDS/HIV, 25(10), 1203–1209.
22 Edwards, L. (2006). Perceived social support and HIV/AIDS medication adherence among African American women. Qualitative Health Research, 16(5), 679–691.
23 Edwards, L., et al. (2012). Am I My Mother’s Keeper? Children as Unexpected Sources of Social Support Among African American Women Living With HIV-AIDS. Journal of Black Studies, 43(5), 571–595.
24 Grierson, J., et al., (2009), op. cit.
25 Petrak, J., et al. (2001). Factors associated with self-disclosure of HIV serostatus to significant others. British Journal of Health Psychology, 6(1), 69–79.
26 Rice, E., et al. (2009). Differential disclosure across social network ties among women living with HIV. AIDS & Behavior, 13(6), 1253–1261.
27 Simoni, J., et al. (1995). Women’s self disclosure of HIV infection: Rates, reasons, and reactions. Journal of Consulting Clinical Psychology, 63(3), 474–478.
28 Petrak, J., et al., (2001), op. cit.
29 Rice, E., et al., (2009), op. cit.
30 Rook, K. (1984). The negative side of social interaction: Impact on psychological well-being. Journal of Personality & Social Psychology, 46(5), 1097–1108.
31 Smith, M., Rapkin, B. (1996). Social support and barriers to family involvement in caregiving for persons with AIDS: implications for patient education. Patient Education and Counseling, 27(1), 85–94.
32 Akiyama, H., et al. (2003). Negative interactions in close relationships across the life span. The Journals of Gerontology, 58B(2), 70.
33 Newsom, J., et al. (2008). Stable negative social exchanges and health. Health Psychology, 27(1), 78–86.
34 Pattison, P. (2011). Relation algebras and social networks. In Scott, J. Carrington, P. (eds.) (2011). The Sage Handbook of Social Network Analysis. Sage Publications Ltd, London. 447–458.
35 Wellman, B., Gulia, M. (1999). A network is more than the sum of its ties: the network basis of social support. In B. Wellman. (ed.)(1999). Networks in the Global Village: Life in Contemporary Communities Boulder, Westview. 83–118.
36 Cornwell, B. (2009). Good health and the bridging of structural holes. Social Networks, 31(1): 92–103.
37 Scott, J. (1991). Social Network Analysis: A Handbook. Sage Publications, London.
38 Wasserman, S., Faust, K. (1994). Social Network Analysis: Methods and Applications. Cambridge University Press, New York.
39 Christakis, N. (2004). Social networks and collateral health effects: have been ignored in medical care and clinical trials, but need to be studied. British Journal of Medicine 329(7459), 184–185.
40 Cornwell, B. (2009), op. cit.
41 Borgatti, S. and V. Lopez-Kidwell (2011). Network theory. In Scott, J. Carrington, P. (2011). The Sage Handbook of Social Network Theory. Sage Publications Inc, London.
42 Homophily is the principle that similarity facilitates connections between individuals in characteristics such as ethnicity, age, occupation, tobacco, cannabis and alcohol use. Interacting with similar others leads to predictability but also limits access to diverse resources, which for women living with HIV, may limit a diversity of understandings of HIV positivity. See: McPherson, J., et al. (2001). Birds of a feather: homophily in social networks. Annual Review of Sociology, 27, 415–444.
43 Lubbers, M., et al. (2010). Longitudinal analysis of personal networks. The case of Argentinean migrants in Spain. Social Networks, 32(1), 91–104.
44 McPherson, J., et al., (2001), op. cit.
45 Granovetter, M. (1973). The strength of weak ties. American Journal of Sociology 78(6), 1360–1380.
46 Wellman, B., Wortley, S. (1990). Different strokes from different folks: community ties and social support. American Journal of Sociology, 96, 558–588.
47 Wellman, B., Gulia, M., (1999), op. cit.
48 Grierson, J., et al., (2003), op. cit.
49 Newman, M. (2003). Mixing patterns in networks. Physical Review, 67(026126), 1–13.
Jayne Russell is a PhD candidate at the Australian Research Centre in Sex, Health and Society, La Trobe University, Melbourne