Restricted accessResearch articleFirst published online 2020-4
Mapping Experiences of Serodiscordance: Using Visual Methodologies to Construct Relationality in Families Living With or Affected by Stigmatized Infectious Disease
The “my health, our family” research project was established to document stories of what serodiscordance (mixed infection status) means for Australian families affected by HIV, hepatitis B, and/or hepatitis C. A family mapping exercise was developed for the start of interviews as a way to conceptualize serodiscordance as a movement of “closeness” and “distance” within the relational networks that participants defined as “family,” the outcome of which was originally intended as a guide to explore the contributions of each family member in the in-depth qualitative interviews that followed. Such static representations of family were soon revealed to be inadequate for capturing the contingent, flexible, and multifaceted nature of familial relationality in the management of these infections. In this article, we explore these shifts for the conceptual openness mapping methods facilitate, and the constraints they reveal, for spatializing family relations in ways that heed diverse experiences of serodiscordance.
BagnoliA. (2009). Beyond the standard interview: The use of graphic elicitation and arts-based methods. Qualitative Research, 9(5), 547–570. https://doi.org/10.1177/1468794109343625
2.
BaxterJ.QuL.WestonR.MoloneyL.HayesA. (2012). Experiences and effects of life events: Evidence from two Australian longitudinal studies. Family Matters, 90, 6–18.
3.
BogartL. M.CowgillB. O.KennedyD.RyanG.MurphyD. A.ElijahJ.SchusterM. A. (2008). HIV-related stigma among people with HIV and their families: A qualitative analysis. AIDS and Behavior, 12(2), 244–254. https://doi.org/10.1007/s10461-007-9231-x
BowenM. (1976). Theory in the practice of psychotherapy. In GuerinP. J.Jr. (Ed.), Family therapy: Theory and practice (pp. 42–90). Gardner Press.
6.
BrenerL.HorwitzR.von HippelC.BryantJ.TreloarC. (2015). Discrimination by health care workers versus discrimination by others: Countervailing forces on HCV treatment intentions. Psychology, Health & Medicine, 20(2), 148–153. https://doi.org/10.1080/13548506.2014.923103
7.
BryantJ.BrenerL.HullP.TreloarC. (2010). Needle sharing in regular sexual relationships: An examination of serodiscordance, drug using practices, and the gendered character of injecting. Drug and Alcohol Dependence, 107(2-3), 182–187. https://doi.org/10.1016/j.drugalcdep.2009.10.007
ChambersD. (2012). A sociology of family life: Change and diversity in intimate relations. Polity Press.
11.
CotlerS.CotlerS.XieH.LucB.LaydenT.WongS. (2012). Characterizing Hepatitis B stigma in Chinese immigrants. Journal of Viral Hepatitis, 19(2), 147–152. https://doi.org/10.1111/j.1365-2893.2011.01462.x
12.
DavisM.FlowersP. (2011). Love and HIV serodiscordance in gay men’s accounts of life with their regular partners. Culture, Health & Sexuality, 13(7), 737–749. https://doi.org/10.1080/13691058.2011.552986
13.
DeMatteoD.WellsL. M.GoldieR. S.KingS. M. (2002). The “family” context of HIV: A need for comprehensive health and social policies. AIDS Care, 14(2), 261–278. https://doi.org/10.1080/09540120120076940
14.
DrewS. E.DuncanR. E.SawyerS. M. (2010). Visual storytelling: A beneficial but challenging method for health research with young people. Qualitative Health Research, 20(12), 1677–1688. https://doi.org/10.1177/1049732310377455
15.
DrysdaleK.WongK.-A. (2019). Sensory ethnography. In AtkinsonP.CernatA.DelamontS.SakshaugJ.WilliamsR. (Eds.), SAGE research methods foundations. SAGE. https://doi.org/10.4135/9781526421036775965
16.
DumontR. H. (2008). Drawing a family map: An experiential tool for engaging children in family therapy. Journal of Family Therapy, 30(3), 247–259. https://doi.org/10.1111/j.1467-6427.2008.00429.x
17.
EggenbergerS. K.MeiersS. J.KrumwiedeN.BliesmerM.EarleP. (2011). Reintegration within families in the context of chronic illness: A family health promoting process. Journal of Nursing and Healthcare of Chronic Illness, 3(3), 283–292. https://doi.org/10.1111/j.1752-9824.2011.01101.x
18.
EllardJ.WallaceJ. (2013). Stigma, discrimination and Hepatitis B: A review of current research. Australian Research Centre in Sex, Health and Society, La Trobe University.
19.
ErlingssonC. L.MagnussonL.HansonE. (2012). Family caregivers’ health in connection with providing care. Qualitative Health Research, 22(5), 640–655. https://doi.org/10.1177/1049732311431247
20.
EvansR.ThomasF. (2009). Emotional interactions and an ethics of care: Caring relations in families affected by HIV and AIDS. Emotion, Space and Society, 2(2), 111–119. https://doi.org/10.1016/j.emospa.2009.08.003
21.
FairC. D.WalkerS. (2011). Pediatric HIV social workers: Perspectives on disclosure. Qualitative Social Work, 10(4), 415–433. https://doi.org/10.1177/1473325010373527
22.
FinchJ.MasonJ. (1993). Negotiating family obligations. The Sociological Review, 38(2), 219–246.
23.
FraserS.TreloarC.BryantJ.RhodesT. (2014). Hepatitis C prevention education needs to be grounded in social relationships. Drugs: Education, Prevention and Policy, 21(1), 88–92. https://doi.org/10.3109/09687637.2013.776517
24.
GallantM. P.SpitzeG. D.ProhaskaT. R. (2007). Help or hindrance? How family and friends influence chronic illness self-management among older adults. Research on Aging, 29(5), 375–409. https://doi.org/10.1177/0164027507303169
25.
García-HuidobroD.PuschelK.SotoG. (2012). Family functioning style and health: Opportunities for health prevention in primary care. British Journal of General Practice, 62(596), e198–e203. https://doi.org/10.3399/bjgp12X630098
26.
GilliesV. (2011). From function to competence: Engaging with the new politics of family. Sociological Research Online, 16(4), 1–11. https://doi.org/10.5153/sro.2393
27.
GleggS. M. N. (2019). Facilitating interviews in qualitative research with visual tools: A typology. Qualitative Health Research, 29(2), 301–310. https://doi.org/10.1177/1049732318786485
28.
GrantJ. S.VanceD. E.KeltnerN. L.WhiteW.RaperJ. L. (2013). Reasons why persons living with HIV include individuals in their chosen families. Journal of the Association of Nurses in AIDS Care, 24(1), 50–60. https://doi.org/10.1016/j.jana.2012.04.007
29.
GrayR. M.Newton-JohnT.LeeJ.RalfsC. (2017). Intimate relationships and chronic illness: A literature review for counsellors and couple therapists. Psychotherapy and Counselling Journal of Australia. http://pacja.org.au/?p=3948
30.
GreenA.KolarK. (2015). Engineering behaviour change in an epidemic: The epistemology of NIH-funded HIV prevention science. Sociology of Health & Illness, 37(4), 561–577. https://doi.org/10.1111/1467-9566.12210
31.
GuerinJ. P. (1976). Family therapy: Theory and practice. Gardner Press.
32.
GuilleminM. (2004). Understanding illness: Using drawings as a research method. Qualitative Health Research, 14(2), 272–289. https://doi.org/10.1177/1049732303260445
33.
HamiltonM.BotfieldJ.NewmanC. E.PerssonA.ValentineK.BryantJ.WallaceJ. (2018). Hidden carers for an increasingly hidden illness? A scoping review of the needs of informal carers of people with HIV in the contemporary treatment era. International Journal of Carers and Caring, 2(4), 529–549. https://doi.org/10.1332/239788218X15411705099442
34.
HarrisonB. (2002). Seeing health and illness worlds–using visual methodologies in a sociology of health and illness: A methodological review. Sociology of Health & Illness, 24(6), 856–872. https://doi.org/10.1111/1467-9566.00322
HoltslanderL. (2005). Clinical application of the 15-minute family interview: Addressing the needs of postpartum families. Journal of Family Nursing, 11(1), 5–18. https://doi.org/10.1177/1074840704273092
38.
HopwoodM.TreloarC. (2008). Resilient coping: Applying adaptive responses to prior adversity during treatment for Hepatitis C infection. Journal of Health Psychology, 13(1), 17–27. https://doi.org/10.1177/1359105307084308
39.
HopwoodM.TreloarC.RedsullL. (2006). Experiences of Hepatitis C treatment and its management: What some patients and health professionals say. National Centre in HIV Social Research, University of New South Wales.
40.
HorsfallD.NoonanK.LeonardR. (2012). Bringing our dying home: How caring for someone at end of life builds social capital and develops compassionate communities. Health Sociology Review, 21(4), 373–382. https://doi.org/10.5172/hesr.2012.21.4.373
41.
HuK.-Q. (2008). Hepatitis B Virus (HBV) infection in Asian and Pacific Islander Americans (APIAs): How can we do better for this special population?The American Journal of Gastroenterology, 103(7), 1824–1833.
42.
JosselsonR. (1995). The space between us: Exploring the dimensions of human relationships. Sage.
43.
Kent-WilkinsonA. (1999). Forensic family genogram: An assessment & intervention tool. Journal of Psychosocial Nursing and Mental Health Services, 37(9), 52–56. https://doi.org/10.3928/0279-3695-19990901-13
44.
The Kirby Institute. (2017). HIV, viral Hepatitis and sexually transmissible infections in Australia: Annual surveillance report 2017. The Kirby Institute, UNSW Sydney.
45.
KnaflK. A.GillissC. L. (2002). Families and chronic illness: A synthesis of current research. Journal of Family Nursing, 8(3), 178–198. https://doi.org/10.1177/107484070200800302
46.
LenetteC.BotfieldJ. R.BoydellK.HaireB.NewmanC. E.ZwiA. B. (2018). Beyond compliance checking: A situated approach to visual research ethics. Journal of Bioethical Inquiry, 15(2), 293–303. https://doi.org/10.1007/s11673-018-9850-0
47.
LimbG. E.HodgeD. R.WardK.FerrellA.AlborotoR. (2018). Developing cultural competence with LDS clients: Utilizing spiritual genograms in social work practice. Journal of Religion & Spirituality in Social Work: Social Thought, 37(2), 166–181. https://doi.org/10.1080/15426432.2018.1448033
48.
MaG. X.LeeS.WangM.TanY.GaoW.MaX.LaiP.ToubbehJ. I. (2011). The role of sociocultural factors in Hepatitis B screening among Asian Americans. Southern Medical Journal, 104(7), 466–472. https://doi.org/10.1097/SMJ.0b013e31821f8ab0
MartireL. M. (2013). Couple-oriented interventions for chronic illness: Where do we go from here?Journal of Social and Personal Relationships, 30(2), 207–214. https://doi.org/10.1177/0265407512453786
51.
McCarthyJ. R. (2012). The powerful relational language of “family”: Togetherness, belonging and personhood. The Sociological Review, 60(1), 68–90. https://doi.org/10.1111/j.1467-954x.2011.02045.x
52.
McCartyC.MolinaJ. L.AguilarC.RotaL. (2007). A comparison of social network mapping and personal network visualization. Field Methods, 19(2), 145–162. https://doi.org/10.1177/1525822X06298592
53.
McGoldrickM.GersonR. (1985). Genograms in family assessment. W. W. Norton.
54.
MerzE. L.MalcarneV. L.KoC. M.SadlerM.KwackL.VarniJ. W.SadlerG. R. (2011). Dyadic concordance among prostate cancer patients and their partners and health-related quality of life: Does it matter?Psychology & Health, 26(6), 651–666. https://doi.org/10.1080/08870441003721251
55.
MorganD. H. (1996). Family connections: An introduction to family studies. Polity Press.
56.
MorganD. H. (2011). Rethinking family practices. Springer.
57.
MykhalovskiyE.RosengartenM. (2009). Commentaries on the nature of social and cultural research: Interviews on HIV/AIDS with Judy Auerbach, Susan Kippax, Steven Epstein, Didier Fassin, Barry Adam and Dennis Altman. Social Theory & Health, 7(3), 284–304.
58.
NeufeldA.HarrisonM. J.StewartM.HughesK. (2008). Advocacy of women family caregivers: Response to nonsupportive interactions with professionals. Qualitative Health Research, 18(3), 301–310. https://doi.org/10.1177/1049732307313768
59.
NewmanC. E.BonarM.GrevilleH. S.ThompsonS. C.BessarabD.KippaxS. C. (2007). Barriers and incentives to HIV treatment uptake among Aboriginal people in Western Australia. AIDS, 21(Supp1), S13–S17. https://doi.org/10.1097/01.aids.0000255080.46976.18
60.
NewmanC. E.PerssonA.EllardJ. (2018). When HIV figures in family life: Exploring the relational reach of serodiscordance. Sexuality & Culture, 22(4), 1527–1541. https://doi.org/10.1007/s12119-018-9542-2
61.
OwitiJ. A.GreenhalghT.SweeneyL.FosterG. R.BhuiK. S. (2015). Illness perceptions and explanatory models of viral Hepatitis B & C among immigrants and refugees: A narrative systematic review. BMC Public Health, 15(1), Article 151. https://doi.org/10.1186/s12889-015-1476-0
62.
PerssonA. (2008). Sero-silence and sero-sharing: Managing HIV in serodiscordant heterosexual relationships. AIDS Care, 20(4), 503–506. https://doi.org/10.1080/09540120701787487
63.
PerssonA. (2013). Notes on the concepts of “serodiscordance”and “risk” in couples with mixed HIV status. Global Public Health, 8(2), 209–220. https://doi.org/10.1080/17441692.2012.729219
64.
PerssonA.EllardJ.NewmanC. E. (2016). Bridging the HIV divide: Stigma, stories and serodiscordant sexuality in the biomedical age. Sexuality & Culture, 20(2), 197–213. https://doi.org/10.1007/s12119-015-9316-z
65.
PerssonA.HughesS. D. (2016). Cross-cultural perspectives on couples with mixed HIV status: Beyond positive/negative (Vol. 2). Springer.
66.
PerssonA.NewmanC. E.HamiltonM.BryantJ.WallaceJ. (2017). Families living with blood-borne viruses: The case for extending the concept of “serodiscordance.”Interdisciplinary Perspectives on Infectious Diseases, 2017. https://doi.org/10.1155/2017/4352783
67.
PerssonA.NewmanC. E.ValentineK.HamiltonM.BryantJ.WallaceJ. (2019). The embodied relationality of blood-borne viruses: How families matter in the context of a stigmatised viral infection. Social Science & Medicine, 243. https://doi.org/10.1016/j.socscimed.2019.112620
RanceJ.RhodesT.FraserS.BryantJ.TreloarC. (2018). Practices of partnership: Negotiated safety among couples who inject drugs. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 22(1), 3–19. https://doi.org/10.1177/1363459316660859
70.
RanceJ.TreloarC.FraserS.BryantJ.RhodesT. (2017). “Don’t think I’m going to leave you over it”: Accounts of changing Hepatitis C status among couples who inject drugs. Drug and Alcohol Dependence, 173, 78–84. https://doi.org/10.1016/j.drugalcdep.2016.12.020
71.
RempelG. R.NeufeldA.KushnerK. E. (2007). Interactive use of genograms and ecomaps in family caregiving research. Journal of Family Nursing, 13(4), 403–419. https://doi.org/10.1177/1074840707307917
72.
RhodesT.CusickL. (2000). Love and intimacy in relationship risk management: HIV positive people and their sexual partners. Sociology of Health & Illness, 22(1), 1–26. https://doi.org/10.1111/1467-9566.00189
73.
RobinsonC. A. (2017). Families living well with chronic illness: The healing process of moving on. Qualitative Health Research, 27(4), 447–461. https://doi.org/10.1177/1049732316675590
74.
RodrigueJ. R.BalistreriW.HaberB.JonasM. M.MohanP.MollestonJ. P.MurrayK. F.NarkewiczM. R.RosenthalP.SmithL. J. (2009). Impact of Hepatitis C virus infection on children and their caregivers: Quality of life, cognitive, and emotional outcomes. Journal of Pediatric Gastroenterology and Nutrition, 48(3), 341–347. https://doi.org/10.1097/MPG.0b013e318185998f
75.
RollandJ. S. (1994). In sickness and in health: The impact of illness on couple’s relationships. Journal of Marital and Family Therapy, 20(4), 327–347. https://doi.org/10.1111/j.1752-0606.1994.tb00125.x
76.
RosenbergJ. P.HorsfallD.LeonardR.NoonanK. (2015). Informal caring networks for people at end of life: Building social capital in Australian communities. Health Sociology Review, 24(1), 29–37. https://doi.org/10.1080/14461242.2014.999400
77.
RoseneilS. (2006). The ambivalences of Angel’s “arrangement”: A psychosocial lens on the contemporary condition of personal life. The Sociological Review, 54(4), 847–869. https://doi.org/10.1111/j.1467-954X.2006.00674.x
78.
RoslandA.-M.HeislerM.PietteJ. D. (2012). The impact of family behaviors and communication patterns on chronic illness outcomes: A systematic review. Journal of Behavioral Medicine, 35(2), 221–239. https://doi.org/10.1007/s10865-011-9354-4
SmithM. K.LiuH.WangJ.HeW.HendersonG. E.MillerW. C.WangN. (2017). Stigma, sex and family life: Serodiscordance in Henan Province, China. In PerssonA.HughesS. D. (Eds.), Cross-cultural perspectives on couples with Mixed HIV status: Beyond positive/negative (pp. 125–138). Springer.
81.
SpencerL.PahlR. (2006). Rethinking friendship: Hidden solidarities today. Princeton University Press.
82.
TreloarC.RanceJ.BackmundM. (2013). Understanding barriers to Hepatitis C virus care and stigmatization from a social perspective. Clinical Infectious Diseases, 57(Suppl_2), S51–S55. https://doi.org/10.1093/cid/cit263
83.
ValentineG.JayneM.GouldM. (2014). The proximity effect: The role of the affective space of family life in shaping children’s knowledge about alcohol and its social and health implications. Childhood, 21(1), 103–118. https://doi.org/10.1177/0907568213476898
84.
ValentineG.SadgroveJ. (2014). Biographical narratives of encounter: The significance of mobility and emplacement in shaping attitudes towards difference. Urban Studies, 51(9), 1979–1994. https://doi.org/10.1177/0042098013504142
85.
ValentineG.SkeltonT.ButlerR. (2003). Coming out and outcomes: Negotiating lesbian and gay identities with, and in, the family. Environment and Planning D: Society and Space, 21(4), 479–499. https://doi.org/10.1068/d277t
86.
WallaceJ.McNallyS.RichmondJ. (2007). National Hepatitis B needs assessment. La Trobe University.
87.
WallaceJ.McNallyS.RichmondJ.HajarizadehB.PittsM. (2011). Managing chronic Hepatitis B: A qualitative study exploring the perspectives of people living with chronic Hepatitis B in Australia. BMC Research Notes, 4(45), 1–7. https://doi.org/10.1186/1756-0500-4-45
88.
WattsC.ShraderE. (1998). How to do (or not to do). . . The genogram: A new research tool to document patterns of decision-making, conflict and vulnerability within households. Health Policy and Planning, 13(4), 459–464. https://doi.org/10.1093/heapol/13.4.459
89.
WeeksJ.HeaphyB.DonovanC. (2003). Same sex intimacies: Families of choice and other life experiments. Routledge.
WillyardJ.MillerK.ShoemakerM.AddisonP. (2008). Making sense of sibling responsibility for family caregiving. Qualitative Health Research, 18(12), 1673–1686. https://doi.org/10.1177/1049732308327195
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
