A Qualitative Inquiry Into the Occupational Challenges Faced by Home-Based Caregivers of People Living With HIV in South Africa’s Gauteng Province

Main Article Content

Maditobane Robert Lekganyane

Abstract

Community home-based caregivers caring for people living with human immunodeficiency virus (PLWHIV) are instrumental in relieving the demand pressures experienced by healthcare service centers. Although their contributions to the healthcare system are essential, they do so under difficult conditions necessitating social work support. This study was conducted in the Gauteng province of South Africa in 2017 to explore the occupational challenges faced by community home-based care caregivers of PLWHIV. Following the qualitative research approach, eighteen caregivers were identified and sampled using purposive and snowball sampling techniques in semi-structured interviews. The data was manually analyzed according to Tesch’s eight steps of qualitative data analysis. This gave rise to four themes: reception by community members, uncooperative clients and families, unsupportive healthcare professionals, and working in unsafe conditions. Following relevant ethical principles such as informed consent, confidentiality, and anonymity throughout the study, trustworthiness was continuously upheld through the principles of prolonged engagement, triangulation, member checking, thick description, and audit trail. The need for psychosocial support programs for caregivers, community and family educational programs, and strengthening partnerships for caregivers, communities, and healthcare professionals is recommended, given the success of community home-based care (CHBC) services for PLWHIV.

Article Details

How to Cite
Lekganyane, M. R. (2024). A Qualitative Inquiry Into the Occupational Challenges Faced by Home-Based Caregivers of People Living With HIV in South Africa’s Gauteng Province. Journal of Population and Social Studies [JPSS], 32, 757–780. Retrieved from https://so03.tci-thaijo.org/index.php/jpss/article/view/271739
Section
Research Articles
Author Biography

Maditobane Robert Lekganyane, Department of Social Work, University of South Africa, Pretoria, South Africa

Corresponding author

References

• Aantjes, C., Quinlan, T., & Bunders, J. (2014). Integration of community home based care programmes within national primary health care revitalisation strategies in Ethiopia, Malawi, South-Africa and Zambia: A comparative assessment. Globalization and Health, 10(1), Article 85. https://doi.org/10.1186/s12992-014-0085-5

• Belotto, M. J. (2018). Data analysis methods for qualitative research: Managing the Challenges of coding, interrater reliability, and thematic analysis. The Qualitative Report, 23(11), 2622–2633. https://doi.org/10.46743/2160-3715/2018.3492

• Caiels, J., Milne, A., & Beadle‐Brown, J. (2021). Strengths-Based Approaches in Social Work and Social Care: Reviewing the evidence. Journal of Long-term Care, 401–422. https://doi.org/10.31389/jltc.102

• Carries, S., Mkhwanazi, Z., Sigwadhi, L. N., Moshabela, M., Nyirenda, M., Goudge, J., & Govindasamy, D. (2023). An economic incentive package to support the wellbeing of caregivers of adolescents living with HIV during the COVID-19 pandemic in South Africa: A feasibility study protocol for a pilot randomised trial. Pilot and Feasibility Studies, 9(1), Article 3. https://doi.org/10.1186/s40814-023-01237-x

• Creswell, J. W. (2014). Research design: Qualitative, quantitative and mixed methods approaches (4th ed.). Sage.

• Dako-Gyeke, M., Boateng, D. A., & Mills, A. A. (2018). The role of social work in the provision of healthcare in Africa. In N. Nortjié, W. A. Hoffman, & J. De Jongh (Eds.), African perspectives on ethics for healthcare professionals (pp. 107–118). Springer.

• Dippenaar, J., Chinula, G., & Selaledi, B. M. (2011). Support for lay caregivers of patients with HIV and AIDS in Lilongwe, Malawi. Africa Journal of Nursing and Midwifery, 13(1), 22–33. https://uir.unisa.ac.za/bitstream/10500/9065/1/ajnm_v13_n1_a4.pdf

• Duda, S., Warburton, C., & Black, N. (2020). Contextual research. In M. Kurosu (Ed.), Human-Computer interaction. Design and user experience (pp. 34–49). Springer, Cham. https://doi.org/10.1007/978-3-030-49059-1_3

• International Federation of Social Workers (IFSW). (2014, July). Global definition of social work. https://www.ifsw.org/what-is-social-work/global-definition-of-social-work/

• Jnanathapaswi, S. G. (2021). Thematic analysis & coding: An overview of the qualitative paradigm. APH Publishing Corporation.

• Joint United Nations Programme on HIV/AIDS (UNAIDS). (2019). Communities at the centre—Defending rights, breaking barriers, reaching people with HIV services. https://www.unaids.org/sites/default/files/media_asset/2019-global-AIDS-update_en.pdf

• Joint United Nations Programme on HIV/AIDS (UNAIDS). (2020). HIV Prevention 2025 Roadmap: Getting on track to end AIDS as a public health threat by 2030. https://www.unaids.org/sites/default/files/media_asset/prevention-2025-roadmap_en.pdf

• Joint United Nations Programme on HIV/AIDS (UNAIDS). (2021). Unequal, unprepared, under threat. Why bold action against inequalities is needed to end AIDS, stop COVID-19 and prepare for future pandemics. https://www.unaids.org/sites/default/files/media_asset/2021_WAD_report_en.pdf

• Kubicek, K., McNeeley, M., Holloway, I. W., Weiss, G. B., & Kipke, M. D. (2013). “It’s Like Our Own Little World”: Resilience as a factor in participating in the ballroom community subculture. AIDS and Behavior, 17(4), 1524–1539. https://doi.org/10.1007/s10461-012-0205-2

• Larki, M., & Roudsari, R. L. (2020). Home-based care, the missing link in caring of patients living with HIV/AIDS and their family members: A narrative review. PubMed, 8(3), 190–208. https://doi.org/10.30476/ijcbnm.2020.82771.1085

• Lekganyane, M. R. (2020). Motivational factors for caring for people living with HIV in South Africa: Home-based caregivers’ experiences. Social Work, 56(4), 478–493. https://doi.org/10.15270/56-4-888

• Lekganyane, M. R., & Alpaslan, N. (2019). Suggestions by home-based caregivers caring for people living with HIV and AIDS on how social workers could support them in managing their work-related challenges. Social Work, 55(2), 141–156. https://doi.org/10.15270/55-2-712

• Maher, C., Hadfield, M., Hutchings, M., & de Eyto, A. (2018). Ensuring rigor in qualitative data analysis: A design research approach to coding combining NVivo with traditional material methods. International Journal of Qualitative Methods, 17(1). https://doi.org/10.1177/1609406918786362

• Mamukeyani, E. (2021). Difficulties experienced by caregivers of HIV/AIDS orphans: A qualitative study for rural-based caregivers. Open Access Library Journal, 8(6), Article e6721. https://doi.org/10.4236/oalib.1106721

• Mashau, N. S., Netshandama, V. O., & Mudau, M. J. (2015). Voluntary home-based caregivers’ perceived needs for support: A study in the Mutale Municipality in South Africa. Journal of Social Sciences, 44(1), 66–71. https://doi.org/10.1080/09718923.2015.11893461

• Mieh, T. M., Iwelunmor, J., & Airhihenbuwa, C. O. (2013). Home-based caregiving for people living with HIV/AIDS in South Africa. Journal of Health Care for the Poor and Underserved, 24(2), 697–705. https://doi.org/10.1353/hpu.2013.0091

• Mitchell, M. M., Hansen, E., Tseng, T. Y., Shen, M. R., Catanzarite, Z., Cruz‐Oliver, D. M., Parker, L., & Knowlton, A. R. (2022). Caregiver role strain in caring for vulnerable persons living with HIV: Correlates of caregiver and care recipient reports. AIDS Care, 34(10), 1314–1320. https://doi.org/10.1080/09540121.2021.1968997

• Mokoena, R. (2014). The resilience of caregivers at a Gauteng-based hospice with people living with HIV/AIDS. [Master’s thesis]. University of South Africa. https://uir.unisa.ac.za/bitstream/handle/10500/18405/dissertation_mokoena_r.pdf?sequence=1&isAllowed=y

• Morton, D., Mayekiso, T., & Cunningham, P. (2018). Structural barriers to South African volunteer home-based caregivers providing quality care: The need for a policy for caregivers not affiliated to primary healthcare clinics. African Journal of AIDS Research, 17(1), 47–53. https://doi.org/10.2989/16085906.2017.1397719

• Moshabela, M., Sips, I., & Barten, F. (2015). Needs assessment for home-based care and the strengthening of social support networks: The role of community care workers in rural South Africa. Global Health Action/Global Health Action. Supplement, 8(1), Article 29265. https://doi.org/10.3402/gha.v8.29265

• Moshidi, M. L., Malema, R. N., Muthelo, L., & Mothiba, T. M. (2021). Provision of care to the people with HIV: Voices of professional nurses in the public hospitals of Limpopo Province, South Africa. International Journal of Environmental Research and Public Health/International Journal of Environmental Research and Public Health, 18(6), Article 3112. https://doi.org/10.3390/ijerph18063112

• Murphy, J., Moolla, A., Kgowedi, S., Mongwenyana, C., Mngadi, S., Ngcobo, N., Miot, J., Evans, D., & Pascoe, S. (2021). Community health worker models in South Africa: A qualitative study on policy implementation of the 2018/19 revised framework. Health Policy and Planning, 36(4), 384–396. https://doi.org/10.1093/heapol/czaa172

• Nassaji, H. (2015). Qualitative and descriptive research: Data type versus data analysis. Language Teaching Research, 19(2), 129–132. https://doi.org/10.1177/1362168815572747

• Ndebele, N., Mlambo, V. H., Molepo, J. N., & Sibiya, L. (2021). The South African health sector and the World Health Organization South Africa’s health sector and its preparedness for the National Health Insurance (NHI): Challenges and opportunities. European Journal of Economics, Law and Social Sciences, 2021(1), 334–350. https://iipccl.org/wp-content/uploads/2022/03/Pages-from-023.pdf

• Networking HIV & AIDS Community of Southern Africa (NACOSA). (2013, July). Recognition for home-based carers. https://www.nacosa.org.za/wp-content/uploads/2016/04/home_based_carers_position_paper_july_2013.pdf

• Ngcobo, S., Scheepers, S., Mbatha, N., Grobler, E. & Rossouw, T. 2022. Rones, barriers, and recommendations for community health workers providing community-based HIV care in Sub-Saharan Africa: A review. AIDS Patient Care and STDs, 36(4), 130–144. https://doi.org/ 10.1089/apc.2022.0020

• Nowell, L., Norris, J. M., White, D., & Moules, N. J. (2017). Thematic analysis. International Journal of Qualitative Methods, 16(1). https://doi.org/10.1177/1609406917733847

• Nyaphisi, M., & Obioha, E. E. (2015). Challenges of HIV and AIDS-related community home-based health care delivery system in Roma Valley, Lesotho. Anthropological Notebooks, 21(1), 83–105. https://anthropological-notebooks.zrc-sazu.si/Notebooks/article/view/176

• O’Brien, B., Harris, I. B., Beckman, T. J., Reed, D. A., & Cook, D. A. (2014). Standards for reporting qualitative research: A synthesis of recommendations. Academic Medicine, 89(9), 1245–1251. https://doi.org/10.1097/acm.0000000000000388

• Ogunmefun, C., Gilbert, L., & Schatz, E. (2010). Older female caregivers and HIV/AIDS-related secondary stigma in rural South Africa. Journal of Cross-cultural Gerontology, 26(1), 85–102. https://doi.org/10.1007/s10823-010-9129-3

• Oleribe, O. O., Momoh, J., Uzochukwu, B., Mbofana, F., Adebiyi, A. O., Barbera, T., Williams, R. J., & Taylor-Robinson, S. D. (2019). Identifying key challenges facing healthcare systems in Africa and potential solutions. International Journal of General Medicine, 12, 395–403. https://doi.org/10.2147/ijgm.s223882

• Osafo, J., Knizek, B. L., Mugisha, J., & Kinyanda, E. (2017). The experiences of caregivers of children living with HIV and AIDS in Uganda: A qualitative study. Globalization and Health, 13(1), Article 72. https://doi.org/10.1186/s12992-017-0294-9

• Pindani, M., Maluwa, A., Nkondo, M., Nyasulu, B. M., & Chilemba, W. (2013). Perception of people living with HIV and AIDS regarding home based care in Malawi. Journal of AIDS & Clinical Research, 4(3), Article 1000201. https://doi.org/10.4172/2155-6113.1000201

• Pulla, V. (2017). Strengths-based approach in social work: A distinct ethical advantage. International Journal of Innovation, Creativity and Change, 3(2), 97–114. https://www.ijicc.net/images/Vol_3_iss_2_nov_2017/Pulla_2017.pdf

• Ransom, P. E., & Asaki, B. (2013). Home-based caregivers in Africa: Alliance building, advocacy and policy environments. Journal of Health and Human Services Administration, 36(3), 367–391. http://www.jstor.org/stable/23621805

• Root, R., Van Wyngaard, A., & Whiteside, A. (2015). Reckoning HIV/AIDS care: A longitudinal study of community home-based caregivers and clients in Swaziland. African Journal of AIDS Research, 14(3), 265–274. https://doi.org/10.2989/16085906.2015.1059864

• Saleebey, D. (1996). The strengths perspective in social work practice: Extensions and cautions. Social Work, 63(4), 296–305. https://doi.org/10.1093/sw/41.3.296

• Saunders, B., Sim, J., Kingstone, T., Baker, S., Waterfield, J., Bartlam, B., Burroughs, H., & Jinks, C. (2017). Saturation in qualitative research: Exploring its conceptualization and operationalization. Quality and Quantity, 52(4), 1893–1907. https://doi.org/10.1007/s11135-017-0574-8

• Simbayi, L. C., Zuma, K., Zungu, N., Moyo, S., Marinda, E., Jooste, S., Mabaso, M., Ramlagan, S., North, A., Van Zyl, J., Mohlabane, N., Dietrich, C., Naidoo, I., & the SABSSM V Team. (2019). South African National HIV Prevalence, Incidence, Behaviour and Communication Survey, 2017: Towards Achieving the UNAIDS 90-90-90 Targets. HSRC Press. https://hsrc.ac.za/uploads/pageContent/10779/SABSSM%20V.pdf

• Simelela, N., Venter, F., Pillay, Y., & Barron, P. (2015). A political and social history of HIV in South Africa. Current HIV/AIDS Reports, 12(2), 256–261. https://doi.org/10.1007/s11904-015-0259-7

• South African National AIDS Council (SANAC). (2023, March). National Strategic Plan for HIV, TB and STIs 2023-2028. National Department of Health. https://sanac.org.za/wp-content/uploads/2023/05/SANAC-NSP-2023-2028-Web-Version.pdf

• Statistics South Africa. (2021, July). Statistical release: Mid-year population estimates. https://www.statssa.gov.za/publications/P0302/P03022021.pdf

• Valjee, L., & van Dyk, A. C. (2014). Impact of caring for people living with HIV on the psychosocial well-being of palliative caregivers. Curationis, 37(1), Article a1201. https://doi.org/10.4102/curationis.v37i1.1201

• Wanga, I., Helová, A., Abuogi, L., Bukusi, E. A., Nalwa, W., Akama, E., Odeny, T., Turan, J. M., & Onono, M. (2019). Acceptability of community-based mentor mothers to support HIV-positive pregnant women on antiretroviral treatment in western Kenya: A qualitative study. BMC Pregnancy and Childbirth, 19(1), Article 288. https://doi.org/10.1186/s12884-019-2419-z

• Wesonga, B. (2015). Components, practices and benefits of home based care of HIV and AIDS clients in Kenya: Butula Local community’s perspective. African Journal of Education and Social Sciences, 2(2015). https://arjess.org/social-sciences-research/components-practices-and-benefits-of-home-based-care-of-hiv-and-aids-patients-in-kenya-butula-local-communitys-perspective.pdf

• Wood, E., Zani, B., Esterhuizen, T., & Young, T. (2018). Nurse led home-based care for people with HIV/AIDS. BMC Health Services Research, 18(1), Article 219. https://doi.org/10.1186/s12913-018-3002-4

• World Health Organization (WHO). (2017, June). The African Regional Health Report. https://www.afro.who.int/sites/default/files/2017-06/african_regional_health_report2006_0.pdf

• Wu, F., He, X., Guida, J., Xu, Y., & Liu, H. (2015). Network stigma towards people living with HIV/AIDS and their caregivers: An egocentric network study. Global Public Health, 10(9), 1032–1045. https://doi.org/10.1080/17441692.2014.1003572