“He was no longer listening to me”: A qualitative study in six Sub-Saharan African countries exploring next-of-kin perspectives on caring following the death of a relative from AIDS

References

• Beals, K., Wight, R., Aneshensel, C., Murphy, D., & Miller-Martinez, D. (2006). The role of family caregivers in HIV medication adherence. AIDS Care, 18(6), 589–596. doi: 10.1080/09540120500275627
   PubMed Web of Science ®Google Scholar
• Bond, V., Hoddinott, G., Viljoen, L., Simuyaba, M., Musheke, M., Seeley, J., & and the HPTN071 Study Team. (2016). Good health and moral responsibility: Key concepts underlying the interpretation of treatment as prevention in South Africa and Zambia before rolling out universal HIV testing and treatment. AIDS Patient Care and STDs, 30(9), 425–434. doi: 10.1089/apc.2016.0114
   PubMed Web of Science ®Google Scholar
• Bonnington, O., Wamoyi, J., Ddaaki, W., Bukenya, D., Ondenge, K., Skovdal, M., … Wringe, A. (2017). Changing forms of HIV-related stigma along the HIV care and treatment continuum in sub-Saharan Africa: A temporal analysis. Sexually Transmitted Infections, 93(Suppl 3), e052975. doi: 10.1136/sextrans-2016-052975
   PubMedGoogle Scholar
• Croome, N., Ahluwalia, M., Hughes, L. D., & Abas, M. (2017). Patient-reported barriers and facilitators to antiretroviral adherence in sub-Saharan Africa. Aids (london, England), 31(7), 995–1007. doi: 10.1097/QAD.0000000000001416
   PubMed Web of Science ®Google Scholar
• Evans, R., & Atim, A. (2015). HIV care and interdependence in Tanzania and Uganda renewing care: Critical international perspectives on the ethics of care. Bristol: The Policy Press.
   Google Scholar
• Evans, R., & Thomas, F. (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. doi: 10.1016/j.emospa.2009.08.003
   Google Scholar
• Floyd, S., Marston, M., Baisley, K., Wringe, A., Herbst, K., Chihana, M., … French, N. (2012). The effect of antiretroviral therapy provision on all-cause, AIDS and non-AIDS mortality at the population level – a comparative analysis of data from four settings in Southern and East Africa. Tropical Medicine and International Health, 17(8), e84–e93. doi: 10.1111/j.1365-3156.2012.03032.x
   PubMed Web of Science ®Google Scholar
• Herce, M. E., Elmore, S. N., Kalanga, N., Keck, J. W., Wroe, E. B., Phiri, A., … Tengatenga, L. (2014). Assessing and responding to palliative care needs in rural Sub-Saharan Africa: Results from a model intervention and situation analysis in Malawi. PLoS One, 9(10), e110457. doi: 10.1371/journal.pone.0110457
   PubMed Web of Science ®Google Scholar
• Homan, R., Searle, C., Esu-Williams, E., Aguirre, M., & Mafata, S. (2005). Exploring the role of family caregivers and home-based care programs in meeting the needs of people living with HIV/AIDS.
   Google Scholar
• Mburu, G., Oxenham, D., Hodgson, I., Nakiyemba, A., Seeley, J., & Bermejo, A. (2013). Community systems strengthening for HIV care: Experiences from Uganda. Journal of Social Work in End-of-Life and Palliative Care, 9(4), 343–368. doi: 10.1080/15524256.2013.846889
   PubMedGoogle Scholar
• Pereira, H. R., & Rebelo Botelho, M. A. (2011). Sudden informal caregivers: The lived experience of informal caregivers after an unexpected event. Journal of Clinical Nursing, 20(17–18), 2448–2457. doi: 10.1111/j.1365-2702.2010.03644.x
   PubMed Web of Science ®Google Scholar
• Reniers, G., Blom, S., Calvert, C., Martin-Onraet, A., Herbst, A. J., Eaton, J. W., … Clark, S. J. (2017). Trends in the burden of HIV mortality after roll-out of antiretroviral therapy in KwaZulu-Natal, South Africa: An observational community cohort study. The Lancet HIV, 4(3), e113–e121. doi: 10.1016/S2352-3018(16)30225-9
   PubMed Web of Science ®Google Scholar
• Seeley, J., Kajura, E., Bachengana, C., Okongo, M., Wagner, U., & Mulder, D. (1993). The extended family and support for people with AIDS in a rural population in south west Uganda: A safety net with holes? AIDS Care, 5(1), 117–122. doi: 10.1080/09540129308258589
   PubMed Web of Science ®Google Scholar
• Skovdal, M., Campbell, C., Madanhire, C., Nyamukapa, C., & Gregson, S. (2011). Challenges faced by elderly guardians in sustaining the adherence to antiretroviral therapy in HIV-infected children in Zimbabwe. AIDS Care, 23(8), 957–964. doi: 10.1080/09540121.2010.542298
   PubMed Web of Science ®Google Scholar
• Skovdal, M., Maswera, R., Kadzura, N., Nyamukapa, C., Rhead, R., Wringe, A., & Gregson, S. (2018). Parental obligations, care and HIV treatment: How care for others motivates self-care in Zimbabwe. Journal of Health Psychology. doi: 10.1177/1359105318788692
   PubMedGoogle Scholar
• Skovdal, M., Ogutu, V., Aoro, C., & Campbell, C. (2009). Young carers as social actors: Coping strategies of children caring for ailing or ageing guardians in western Kenya. Social Science and Medicine, 69(4), 587–595. doi: 10.1016/j.socscimed.2009.06.016
   PubMed Web of Science ®Google Scholar
• Skovdal, M., Ssekubugu, R., Nyamukapa, C., Seeley, J., Renju, J., Wamoyi, J., … Zaba, B. (2017). The rebellious man: Next-of-kin accounts of the death of a male relative on antiretroviral therapy in sub-Saharan Africa. Paper presented at the 13th international AIDS impact conference, Cape Town, South Africa.
   Google Scholar
• Slaymaker, E., McLean, E., Wringe, A., Calvert, C., Marston, M., Reniers, G., … Michael, D. (2017). The network for analysing longitudinal population-based HIV/AIDS data on Africa (ALPHA): data on mortality, by HIV status and stage on the HIV care continuum, among the general population in seven longitudinal studies between 1989 and 2014. Gates Open Research, 1, 4. doi: 10.12688/gatesopenres.12753.1
   PubMedGoogle Scholar
• Tronto, J. C. (1993). Moral boundaries: A political argument for an ethic of care. New York: Routledge.
   Google Scholar
• Tronto, J. C. (2013). Caring democracy: Markets, equality, and justice. New York: NYU Press.
   Google Scholar
• Ware, N. C., Idoko, J., Kaaya, S., Biraro, I. A., Wyatt, M. A., Agbaji, O., … Bangsberg, D. R. (2009). Explaining adherence success in Sub-Saharan Africa: An ethnographic study. PLoS Medicine, 6(1), e1000011. doi: 10.1371/journal.pmed.1000011
   PubMed Web of Science ®Google Scholar
• Williams, A. (2002). Changing geographies of care: Employing the concept of therapeutic landscapes as a framework in examining home space. Social Science and Medicine, 55(1), 141–154. doi: 10.1016/S0277-9536(01)00209-X
   PubMed Web of Science ®Google Scholar
• Wringe, A., Renju, J., Seeley, J., Moshabela, M., & Skovdal, M. (2017). Bottlenecks to HIV care and treatment in sub-Saharan Africa: A multi-country qualitative study. Sexually Transmitted Infections, 93(Suppl. 3), e053172. doi:10.1136/sextrans-2017-053172. Retrieved from http://sti.bmj.com/content/sextrans/93/Suppl_3/e053172.full.pdf
   PubMedGoogle Scholar
• Zhou, Y. R. (2010). The phenomenology of time: Lived experiences of people with HIV/AIDS in China. Health, 14(3), 310–325. doi: 10.1177/1363459309358596
   PubMed Web of Science ®Google Scholar