A qualitative study of community home-based care and antiretroviral adherence in Swaziland

Journal of the International AIDS Society

Volumn 16, Issue , 2013, Pages

  Root, Robin ^a   Whiteside, Alan ^b,c  

^a CITY UNIVERSITY OF NEW YORK   (United States)

^b UNIVERSITY OF KWAZULU NATAL   (South Africa)

^c WILFRID LAURIER UNIVERSITY   (Canada)

Author keywords

Adherence; Africa; AIDS; Antiretroviral treatment; ART; Chronic disease; HIV; Home based care; Stigma

Indexed keywords

ANTI HUMAN IMMUNODEFICIENCY VIRUS AGENT;

ACQUIRED IMMUNE DEFICIENCY SYNDROME; ADOLESCENT; ADULT; AGED; ARTICLE; CD4 LYMPHOCYTE COUNT; COMMUNITY CARE; CONFIDENTIALITY; DEVELOPING COUNTRY; EDUCATIONAL STATUS; FEMALE; HEALTH CARE QUALITY; HERBAL MEDICINE; HIGHLY ACTIVE ANTIRETROVIRAL THERAPY; HIV TEST; HOME CARE; HUMAN; HUMAN IMMUNODEFICIENCY VIRUS INFECTED PATIENT; HUMAN IMMUNODEFICIENCY VIRUS INFECTION; MAJOR CLINICAL STUDY; MALE; MARRIAGE; MEDICATION COMPLIANCE; MIDDLE AGED; PATIENT COMPLIANCE; PRIORITY JOURNAL; PUBLIC HEALTH SERVICE; QUALITATIVE RESEARCH; QUESTIONNAIRE; RELIGION; RURAL POPULATION; SELF CARE; SOCIAL INTERACTION; SOCIAL PROBLEM; SOCIAL STIGMA; SOCIOLOGY; SUICIDE; SWAZILAND; TRADITIONAL MEDICINE; YOUNG ADULT;

ADHERENCE; AFRICA; AIDS; ANTIRETROVIRAL TREATMENT; ART; CHRONIC DISEASE; HIV; HOME-BASED CARE; STIGMA;

ADOLESCENT; ADULT; ANTI-RETROVIRAL AGENTS; COMMUNITY HEALTH SERVICES; FEMALE; HEALTH SERVICES RESEARCH; HIV INFECTIONS; HUMANS; MALE; MEDICATION ADHERENCE; MIDDLE AGED; QUESTIONNAIRES; SWAZILAND; YOUNG ADULT;

EID: 84891684454     PISSN: None     EISSN: 17582652     Source Type: Journal    
DOI: 10.7448/IAS.16.1.17978     Document Type: Article

References (61)

1. World Health Organization. Global health sector strategy on HIV/AIDS 2011-2015. Geneva: World Health Organization; 2011.
2. Fee E, Fox D, editors. AIDS: the making of a chronic disease. Berkeley: University of California Press; 1992.
3. Gopal M, Bhaskaran A, Khalife W, Barbagelata A. Heart disease in patients with HIV/AIDS-An emerging clinical problem. Curr Cardiol Rev. 2009;5(2):149-54.
4. Uys L. A Model for home-based care. In: Uys L, Cameron S, editors. Home-based HIV/AIDS care. Oxford: Oxford University Press; 2003a. p. 1-15.
5. Uys L. Aspects of the care of people with HIV/AIDS in South Africa. Public Health Nurs. 2003b;20(4):271-80.
6. Ogden J, Esim S, Grown C. Expanding the care continuum for HIV/AIDS: bringing carers into focus. Health Policy Plan. 2006;21(5):333-42.
7. Weidle P, Wamai N, Solberg P, Liechty C, Sendagala S, Were W, et al. Adherence to antiretroviral therapy in a home-based AIDS care programme in rural Uganda. Lancet. 2006;368:1587-94.
8. Bowie C, Kalilane L, Cleary P, Bowie C. The pattern of symptoms in patients receiving home based care in Bangwe, Malawi: a descriptive study. BMC Palliat Care. 2006;5(1):1-7.
9. University Research Co., LLC. Increasing HIV testing and counseling in the Kingdom of Swaziland-technical brief [Internet]. 2010 Oct [cited 2012 May 15]. Available from: http://www.urc-chs.com/uploads/resourcefiles/ Swazilandtechnicalbrief.pdf
10. Iwelunmore J, Airhihrnbuwa C, Okoror T, Brown D, Belue R. Family systems and HIV/AIDS in South Africa. Int Q Community Health Educ. 2006-2007;27(4):321- 35.
11. Kipp W, Nkosi T. Factors associated with the self-reported health status of female caregivers of AIDS patients. West J Nurs Res. 2008;30(1):20-33.
12. Gibbs A, Smith J. Annotated bibliography on care in the context of HIV/AIDS. Durban, South Africa: Health Economics and HIV/AIDS Research Division; 2010.
13. Mills E, Nachega J, Buchan I, Orbinski J, Attaran A, Singh S, et al. Adherence to antiretroviral therapy in sub-Saharan Africa and North America. JAMA. 2006;296(6):679-90.
14. World Health Organization. Consolidated guidelines on the use of antiretroviral drugs for treating and preventing HIV infection: recommendations for a public health approach [Internet]. 2013 Jun [cited 2013 Sep 23]. Available from: http://apps.who.int/iris/bitstream/10665/85321/1/9789241505727-eng.pdf
15. Thomas F. Stigma, fatigue, and social breakdown: exploring the impacts of HIV/AIDS on patient and carer well-being in the Caprivi Region, Namibia. Soc Sci Med. 2006;63:3174-87.
16. Kates J,Wexler A, Lief E, Avila C, Gobet B. Financing the response to AIDS in low- and middle- income countries: international assistance from Donor Governments in 2010. Kaiser Family Foundation and Joint United Nations Programme on HIV/AIDS [UNAIDS] [Internet]. 2011 Aug [cited 2012 May 6]. Available from: http://www.kff.org/hivaids/upload/7347-052.pdf
17. World Bank. Swaziland [Internet]. 2012 [cited 2013 Sep 23]. Available from: http://data.worldbank.org/country/swaziland
18. International Fund for Agricultural Development. Rural poverty portal. Rural poverty in the Kingdom of Swaziland [Internet]. 2013 [cited 2013 Aug 23]. Available from: http://www.ruralpovertyportal.org/country/home/tags/swaziland#
19. Central Statistical Office (CSO) [Swaziland], and Macro International Inc. Swaziland demographic and health survey 2006-2007. Mbabane, Swaziland: Central Statistical Office and Macro International.
20. Leclerc-Madlala S. Age-disparate and intergenerational sex in southern Africa: the dynamics of hypervulnerability. AIDS. 2008;S4:S17-25.
21. Shannon K, Leiter K, Phaladze N, Hlanze Z, Tsai AC, et al. Gender inequity norms are associated with increased male-perpetrated rape and sexual risks for HIV infection in Botswana and Swaziland. PLoS One. 2012;7(1):e28739.
22. Joint United Nations Programme on HIV/AIDS [UNAIDS]. Swaziland country report on monitoring the political declaration on HIV and AIDS [Internet]. 2012 Mar [cited 2013 Aug 16]. Available from: http://www.unaids.org/en/dataanalysis/ knowyourresponse/countryprogressreports/2012countries/ce-SZ-Narrative-Report[1]. pdf
23. Integrated Regional Information Networks (IRIN). Swaziland: a culture that encourages HIV/AIDS [Internet]. 2009 Apr [cited 2013 Aug 27]. Available from: http://www.refworld.org/cgi-bin/texis/vtx/rwmain?docid=49e6ef2dc
24. United Nations Development Program. Human Development Report. Swaziland [internet]. 2013 [cited 2013 Aug 27]. Available from: http://hdrstats.undp.org/ images/explanations/SWZ.pdf
25. Mauch V, Oey L. Report of KNCV visit to The National Tuberculosis Control Program of Swaziland 07-17 July 2009 Report 2. Den Haag, The Netherlands: KNCV Tuberculosis Foundation [Internet]. [cited 2011 Oct 13]. Available from: www.stoptb.org/.../1-3-33-KNCV%20Report%202%20Swaziland%20July%2009.pdf
26. Médecins Sans Frontières. Swaziland: HIV and tuberculosis epidemic demands action [Internet]. 2010 Nov [cited 2012 May 14]. Available from: http://www.msf.org.uk/swaziland-PR-nov10-20101118.news
27. President's Emergency Plan for AIDS Relief. Partnership Framework on HIV/AIDS 2009-2013: a collaborative effort of the Government of the Kingdom of Swaziland and the Government of the USA [Internet]. 2009 June [cited 2011 Sep 26]. Available from: http://www.pepfar.gov/frameworks/swaziland/124993.htm
28. President's Emergency Plan for AIDS Relief. The US President's emergency plan for AIDS relief. Fiscal year 2009: PEPFAR operational plan [Internet]. 2010 Nov [cited 2011 Sep 26]. Available from: www.pepfar.gov/documents/organization/ 124050.pdf
29. The Government of Swaziland. The national multi-sectoral strategic framework for HIV/AIDS: 2009-2014 [Internet]. [cited 2013 Sep 23]. Available from: http://www.ilo.org/wcmsp5/groups/public/-ed-protect/-protrav/-ilo-aids/ documents/legaldocument/wcms-174723.pdf
30. Service availability Mapping (SAM) 2006-2007. Kingdom of Swaziland: Ministry of Social Welfare and Ministry of Education. World Health Organization Regional Office for Africa. 2008 [Internet]. [cited 2013 Sep 23]. Available at http://www.infocenter.nercha.org.sz/sites/default/files/infocenter-db/ELDOCS/ SAM.pdf
31. Lund F, Budlender F. Research Report. Paid care providers in South Africa: nurses, domestic workers, and home-based care workers. Geneva: United Nations Research Institute for Social Development; April 2009.
32. Van Wyngaard A. Reducing the effects of HIV/AIDS in rural communities through a holistic approach by volunteer caregivers in Shiselweni, Southern Swaziland. U.S. Agency for International Development [Internet]. [cited 2013 Aug 27]. Available from: http://www.hciproject.org/node/3291
33. Root R, Van Wyngaard A. Free love: a case study of church-run home-based caregivers in a high vulnerability setting. Glob Public Health. 2011; 6(Suppl 2):S174-91.
34. Root R. Being positive in church: religious participation and HIV disclosure rationale among people living with HIV/AIDS in rural Swaziland. Afr J AIDS Res. 2009;8(3):295-309.
35. Root R. Situating PLWHA experiences of HIV-related stigma in Swaziland. Glob Public Health. 2010;5(5):523-38.
36. Yach D. The use and value of qualitative methods in health research in developing countries. Soc Sci Med. 1992;35:603-12.
37. Thorne S. Data analysis in qualitative research. Evid Based Nurs. 2000;3:68-70.
38. Ryan, G. What are standards of rigor for qualitative research? Rand Corporation [Internet]. n.d. [cited 2013 Sep 23]. Available from: www.wjh.harvard.edu/nsfqual/Ryan%20Paper.pdf?
39. Guest G, MacQueen KM, Namey EE. Applied thematic analysis. Thousand Oaks, CA: Sage; 2012.
40. Root R. "That's when life changed": PLWHA experiences of church run home-based care in Swaziland. A report for the Health Economics and HIV/AIDS Research Division [Internet]. 2011 Oct. [cited 2013 Sep 23]. Available from: http://www.heard.or.za/
41. Dlamini P, Wantland D, Makoae L, Chirwa M, Kohi T, Greef M, et al. HIV stigma and missed medications in HIV-positive people in five African countries. AIDS Patient Care and STDs. 2009;23(5):377-87.
42. International Treatment Preparedness Coalition. Rationing funds, risking lives: world backtracks on HIV treatment [Internet]. 2010 Apr [cited 2013 Sep 23]. Available from: http://www.who.int/pmnch/ITPCMTT8report.pdf
43. Thomas D. A general inductive approach for qualitative analysis. School of Population Health. University of Auckland [Internet]. 2003 [cited 2013 Sep 23]. Available from: http://www.fmhs.auckland.ac.nz/soph/centres/hrmas/-docs/ Inductive2003.pdf
44. Campbell C, Nair Y, Maimane S, Nicholson J. Dying twice': a multi-level model of the roots of AIDS stigma in two South African communities. J Health Psychol. 2007;12(3):403-16.
45. Ncama B, Uys L. Community impact of HIV status disclosure through an integrated community home-cased care programme. Afr J AIDS Res. 2006;5(3):265-71.
46. Apondi R, Bunnell R, Awor A,Wamai N, Bikaako-Kajura W, Solberg P, et al. Home-based antiretroviral care is associated with positive social outcomes in a prospective cohort in Uganda. J Acquir Immune Defic Syndr. 2007;44(1):71-6.
47. Hardon A, Akurut D, Comoro C, Ekezie C, Irunde H, Gerrits T, et al. Hunger, waiting time and transport costs: time to confront challenges to ART adherence in Africa. AIDS Care. 2007;19(5):658-65.
48. Ware N, Idoko J, Kaaya S, Biraro I, Wyatt M, Agbaji O, et al. Explaining adherence success in Sub-Saharan Africa: an ethnographic study. PloS Med. 2009;6(1):e1000011.
49. Campbell C. Letting them die: why HIV/AIDS programmes fail. The International African Institute. Oxford, United Kingdom: James Currey, an imprint of an imprint of Boydell and Brewer Ltd.; 2003.
50. Escott S, Walley J. Listening to those on the frontline: lessons for community-based tuberculosis programmes from a qualitative study in Swaziland. Soc Sci Med. 2005;61(8):1701-10.
51. Makoae L, Portillo C, Uys L, Dlamini P, Greeff M, Chirwa M, et al. The impact of taking or not taking ARVs on HIV stigma as reported by persons living with HIV infection in five African Countries. AIDS Care. 2009;21(11):1357-62.
52. Deacon H, Stephney I, Prosalendis S. Understanding HIV/AIDs stigma: a theoretical and methodological analysis [research monograph]. Human Sciences Research Council (HRSC). Cape Town, SA: HSRC Press; 2005.
53. Campbell C, Nair Y, Maimane S, Sibiya Z. Supporting people with AIDS and their caregivers in rural South Africa: Possibilities and challenges. Health Place. 2008;14:507-17.
54. Kippax S. Effective HIV prevention: the indispensable role of social science [commentary]. J Int AIDS Soc. 2012;15(2):17357.
55. Colvin C. HIV/AIDS, chronic diseases and globalization. Global Health. 2011;7(1):31-6.
56. Weiser S, Young S, Cohen C, Kushel M, Tsai A, Tian P, et al. Conceptual framework for understanding the bidirectional links between food insecurity and HIV/AIDS. Am J Clin Nutr. 2011;94(6):1729S-39.
57. Physicians for Human Rights. Epidemic of inequality: women's rights and HIV/AIDS in Botswana & Swaziland: an evidence-based report on the effects of gender inequity, stigma and discrimination. Cambridge, MA: Physicians for Human Rights; 2007.
58. Tsai A, Bangsberg D, Emenyonu N, Senkungu J, Martin J, Weiser S. The social context of food insecurity among persons living with HIV/AIDS in rural Uganda. Soc Sci Med. 2011;73(12):1717-24.
59. Nixon S, Hanass-Hancock J, Whiteside A, Barnett T. The increasing chronicity of HIV in sub-Saharan Africa: Re-thinking "HIV as a long-wave event" in the era of widespread access to ART [editorial]. Global Health. 2011;7(1):1-5.
60. Zachariah R, Van Damme W, Schmit J, Harries A. The HIV/AIDS epidemic in sub-Saharan Africa: thinking ahead on programmatic tasks and related operational research. J Int AIDS Soc. 2011;14(Suppl 1):S7.
61. Oka S. Fact sheet treatment 2.0 Geneva: Joint United Nations Programme on HIV/AIDS [UNAIDS] [Internet]. n.d [cited 2011 Dec 12]. Available from: http://data.unaids.org/pub/Outlook/2010/20100713-fs-outlook-treatment-en.pdf