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Published in: BMC Health Services Research 1/2015

Open Access 01-12-2015 | Research article

‘Deep down in their heart, they wish they could be given some incentives’: a qualitative study on the changing roles and relations of care among home-based caregivers in Zambia

Authors: Fabian Cataldo, Karina Kielmann, Tara Kielmann, Gitau Mburu, Maurice Musheke

Published in: BMC Health Services Research | Issue 1/2015

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Abstract

Background

Across Sub-Saharan Africa, the roll-out of antiretroviral treatment (ART) has contributed to shifting HIV care towards the management of a chronic health condition. While the balance of professional and lay tasks in HIV caregiving has been significantly altered due to changing skills requirements and task-shifting initiatives, little attention has been given to the effects of these changes on health workers’ motivation and existing care relations.

Methods

This paper draws on a cross-sectional, qualitative study that explored changes in home-based care (HBC) in the light of widespread ART rollout in the Lusaka and Kabwe districts of Zambia. Methods included observation of HBC daily activities, key informant interviews with programme staff from three local HBC organisations (n = 17) and ART clinic staff (n = 8), as well as in-depth interviews with home-based caregivers (n = 48) and HBC clients (n = 31).

Results

Since the roll-out of ART, home-based caregivers spend less time on hands-on physical care and support in the household, and are increasingly involved in specialised tasks supporting their clients’ access and adherence to ART. Despite their pride in gaining technical care skills, caregivers lament their lack of formal recognition through training, remuneration or mobility within the health system. Care relations within homes have also been altered as caregivers’ newly acquired functions of monitoring their clients while on ART are met with some ambivalence. Caregivers are under pressure to meet clients and their families’ demands, although they are no longer able to provide material support formerly associated with donor funding for HBC.

Conclusions

As their responsibilities and working environments are rapidly evolving, caregivers’ motivations are changing. It is essential to identify and address the growing tensions between an idealized rhetoric of altruistic volunteerism in home-based care, and the realities of lay worker deployment in HIV care interventions that not only shift tasks, but transform social and professional relations in ways that may profoundly influence caregivers’ motivation and quality of care.
Literature
1.
go back to reference Singh P, Sachs JD. 1 million community health workers in sub-Saharan Africa by 2015. Lancet. 2013;382(9889):363–5.CrossRefPubMed Singh P, Sachs JD. 1 million community health workers in sub-Saharan Africa by 2015. Lancet. 2013;382(9889):363–5.CrossRefPubMed
3.
go back to reference Johnson LF, Mossong J, Dorrington RE, Schomaker M, Hoffmann CJ, Keiser O, et al. Life expectancies of South African adults starting antiretroviral treatment: collaborative analysis of cohort studies. PLoS Med. 2013;10(4):e1001418.CrossRefPubMedPubMedCentral Johnson LF, Mossong J, Dorrington RE, Schomaker M, Hoffmann CJ, Keiser O, et al. Life expectancies of South African adults starting antiretroviral treatment: collaborative analysis of cohort studies. PLoS Med. 2013;10(4):e1001418.CrossRefPubMedPubMedCentral
4.
go back to reference Hermann K, Van Damme W, Pariyo GW, Schouten E, Assefa Y, Cirera A, et al. Community health workers for ART in sub-Saharan Africa: learning from experience-capitalizing on new opportunities. Hum Resour Health. 2009;7:31.CrossRefPubMedPubMedCentral Hermann K, Van Damme W, Pariyo GW, Schouten E, Assefa Y, Cirera A, et al. Community health workers for ART in sub-Saharan Africa: learning from experience-capitalizing on new opportunities. Hum Resour Health. 2009;7:31.CrossRefPubMedPubMedCentral
5.
go back to reference Mwai GW, Mburu G, Torpey K, Frost P, Ford N, Seeley J. Role and outcomes of community health workers in HIV care in sub-Saharan Africa: a systematic review. J Int AIDS Soc. 2013;16(1):18586.CrossRefPubMedPubMedCentral Mwai GW, Mburu G, Torpey K, Frost P, Ford N, Seeley J. Role and outcomes of community health workers in HIV care in sub-Saharan Africa: a systematic review. J Int AIDS Soc. 2013;16(1):18586.CrossRefPubMedPubMedCentral
6.
go back to reference Zulu JM, Kinsman J, Michelo C, Hurtig AK. Developing the national community health assistant strategy in Zambia: a policy analysis. Health Res Policy Systems BioMed Central. 2013;11:24.CrossRef Zulu JM, Kinsman J, Michelo C, Hurtig AK. Developing the national community health assistant strategy in Zambia: a policy analysis. Health Res Policy Systems BioMed Central. 2013;11:24.CrossRef
7.
go back to reference Zulu JM, Kinsman J, Michelo C, Hurtig AK. Hope and despair: community health assistants’ experiences of working in a rural district in Zambia. Human Resour Health. 2014;12:30.CrossRef Zulu JM, Kinsman J, Michelo C, Hurtig AK. Hope and despair: community health assistants’ experiences of working in a rural district in Zambia. Human Resour Health. 2014;12:30.CrossRef
8.
go back to reference Zulu JM, Kinsman J, Michelo C, Hurtig AK. Integrating national community-based health worker programmes into health systems: a systematic review identifying lessons learned from low-and middle-income countries. BMC Public Health. 2014;14(1):987.CrossRefPubMedPubMedCentral Zulu JM, Kinsman J, Michelo C, Hurtig AK. Integrating national community-based health worker programmes into health systems: a systematic review identifying lessons learned from low-and middle-income countries. BMC Public Health. 2014;14(1):987.CrossRefPubMedPubMedCentral
9.
go back to reference Sanjana P, Torpey K, Schwarzwalder A, Simumba C, Kasonde P, Nyirenda L, et al. Task-shifting HIV counselling and testing services in Zambia: the role of lay counsellors. Human Resour Health. 2009;7:44.CrossRef Sanjana P, Torpey K, Schwarzwalder A, Simumba C, Kasonde P, Nyirenda L, et al. Task-shifting HIV counselling and testing services in Zambia: the role of lay counsellors. Human Resour Health. 2009;7:44.CrossRef
10.
go back to reference Bemelmans M, van den Akker T, Ford N, Philips M, Zachariah R, Harries A, et al. Providing universal access to antiretroviral therapy in Thyolo, Malawi through task shifting and decentralization of HIV/AIDS care. Trop Med Int Health. 2010;15(12):1413–20.CrossRefPubMed Bemelmans M, van den Akker T, Ford N, Philips M, Zachariah R, Harries A, et al. Providing universal access to antiretroviral therapy in Thyolo, Malawi through task shifting and decentralization of HIV/AIDS care. Trop Med Int Health. 2010;15(12):1413–20.CrossRefPubMed
11.
go back to reference Shumbusho F, van Griensven J, Lowrance D, Turate I, Weaver MA, Price J, et al. Task shifting for scale-up of HIV care: evaluation of nurse-centered antiretroviral treatment at rural health centers in Rwanda. PLoS Med. 2009;6(10):e1000163.CrossRefPubMedPubMedCentral Shumbusho F, van Griensven J, Lowrance D, Turate I, Weaver MA, Price J, et al. Task shifting for scale-up of HIV care: evaluation of nurse-centered antiretroviral treatment at rural health centers in Rwanda. PLoS Med. 2009;6(10):e1000163.CrossRefPubMedPubMedCentral
12.
go back to reference Selke HM, Kimaiyo S, Sidle JE, Vedanthan R, Tierney WM, Shen C, et al. Task-shifting of antiretroviral delivery from health care workers to persons living with HIV/AIDS: clinical outcomes of a community-based program in Kenya. J Acquir Immune Defic Syndr. 2010;55(4):483–90.CrossRefPubMed Selke HM, Kimaiyo S, Sidle JE, Vedanthan R, Tierney WM, Shen C, et al. Task-shifting of antiretroviral delivery from health care workers to persons living with HIV/AIDS: clinical outcomes of a community-based program in Kenya. J Acquir Immune Defic Syndr. 2010;55(4):483–90.CrossRefPubMed
13.
go back to reference Tenthani L, Cataldo F, Chan AK, Bedell R, Martiniuk AL, van Lettow M. Involving expert patients in antiretroviral treatment provision in a tertiary referral hospital HIV clinic in Malawi. BMC Health Serv Res. 2012;12:140.CrossRefPubMedPubMedCentral Tenthani L, Cataldo F, Chan AK, Bedell R, Martiniuk AL, van Lettow M. Involving expert patients in antiretroviral treatment provision in a tertiary referral hospital HIV clinic in Malawi. BMC Health Serv Res. 2012;12:140.CrossRefPubMedPubMedCentral
14.
go back to reference Kielmann K, Datye V, Pradhan A, Rangan S. Balancing authority, deference and trust across the public-private divide in health care: Tuberculosis health visitors in western Maharashtra, India. Glob Public Health. 2014;9(8):975–92.CrossRefPubMedPubMedCentral Kielmann K, Datye V, Pradhan A, Rangan S. Balancing authority, deference and trust across the public-private divide in health care: Tuberculosis health visitors in western Maharashtra, India. Glob Public Health. 2014;9(8):975–92.CrossRefPubMedPubMedCentral
15.
go back to reference Nading AM. “Love isn’t there in your stomach”: a moral economy of medical citizenship among Nicaraguan community health workers. Med Anthropol Q. 2013;27(1):84–102.CrossRefPubMed Nading AM. “Love isn’t there in your stomach”: a moral economy of medical citizenship among Nicaraguan community health workers. Med Anthropol Q. 2013;27(1):84–102.CrossRefPubMed
16.
go back to reference Gilson L. Trust and the development of health care as a social institution. Soc Sci Med. 2003;56(7):1453–68.CrossRefPubMed Gilson L. Trust and the development of health care as a social institution. Soc Sci Med. 2003;56(7):1453–68.CrossRefPubMed
17.
go back to reference Blaauw D, Gilson L, Penn-Kekana L, Schneider H. Organisational relationships and the ‘software’ of health sector reform. In: Centre for health policy. South Africa: School of Public Health, University of Witwatersrand; 2003. Blaauw D, Gilson L, Penn-Kekana L, Schneider H. Organisational relationships and the ‘software’ of health sector reform. In: Centre for health policy. South Africa: School of Public Health, University of Witwatersrand; 2003.
18.
19.
go back to reference Kalofonos I. ‘All they do is pray’: community labour and the narrowing of ‘care’ during Mozambique’s HIV scale-up. Glob Public Health. 2014;9(1–2):7–24.CrossRefPubMed Kalofonos I. ‘All they do is pray’: community labour and the narrowing of ‘care’ during Mozambique’s HIV scale-up. Glob Public Health. 2014;9(1–2):7–24.CrossRefPubMed
20.
go back to reference Bradley EH, Curry LA, Devers KJ. Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Serv Res. 2007;42(4):1758–72.CrossRefPubMedPubMedCentral Bradley EH, Curry LA, Devers KJ. Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Serv Res. 2007;42(4):1758–72.CrossRefPubMedPubMedCentral
21.
go back to reference Wouters E, Van Damme W, van Rensburg D, Masquillier C, Meulemans H. Impact of community-based support services on antiretroviral treatment programme delivery and outcomes in resource-limited countries: a synthetic review. BMC Health Serv Res. 2012;12:194.CrossRefPubMedPubMedCentral Wouters E, Van Damme W, van Rensburg D, Masquillier C, Meulemans H. Impact of community-based support services on antiretroviral treatment programme delivery and outcomes in resource-limited countries: a synthetic review. BMC Health Serv Res. 2012;12:194.CrossRefPubMedPubMedCentral
22.
go back to reference Dil Y, Strachan D, Cairncross S, Korkor AS, Hill Z. Motivations and challenges of community-based surveillance volunteers in the northern region of Ghana. J Community Health. 2012;37(6):1192–8.CrossRefPubMed Dil Y, Strachan D, Cairncross S, Korkor AS, Hill Z. Motivations and challenges of community-based surveillance volunteers in the northern region of Ghana. J Community Health. 2012;37(6):1192–8.CrossRefPubMed
23.
go back to reference Campbell C, Scott K, Madenhire C, Nyamukapa C, Gregson S. Sources of motivation and frustration among healthcare workers administering antiretroviral treatment for HIV in rural Zimbabwe. AIDS Care. 2011;23(7):797–802.CrossRefPubMedPubMedCentral Campbell C, Scott K, Madenhire C, Nyamukapa C, Gregson S. Sources of motivation and frustration among healthcare workers administering antiretroviral treatment for HIV in rural Zimbabwe. AIDS Care. 2011;23(7):797–802.CrossRefPubMedPubMedCentral
24.
go back to reference Akintola O. Defying all odds: coping with the challenges of volunteer caregiving for patients with AIDS in South Africa. J Adv Nurs. 2008;63(4):357–65.CrossRefPubMed Akintola O. Defying all odds: coping with the challenges of volunteer caregiving for patients with AIDS in South Africa. J Adv Nurs. 2008;63(4):357–65.CrossRefPubMed
25.
go back to reference Maes KC, Shifferaw S, Hadley C, Tesfaye F. Volunteer home-based HIV/AIDS care and food crisis in Addis Ababa, Ethiopia: sustainability in the face of chronic food insecurity. Health Policy Plan. 2011;26(1):43–52.CrossRefPubMed Maes KC, Shifferaw S, Hadley C, Tesfaye F. Volunteer home-based HIV/AIDS care and food crisis in Addis Ababa, Ethiopia: sustainability in the face of chronic food insecurity. Health Policy Plan. 2011;26(1):43–52.CrossRefPubMed
26.
go back to reference Schneider H, Lehmann U. Lay health workers and HIV programmes: implications for health systems. AIDS Care. 2010;22 Suppl 1:60–7.CrossRefPubMed Schneider H, Lehmann U. Lay health workers and HIV programmes: implications for health systems. AIDS Care. 2010;22 Suppl 1:60–7.CrossRefPubMed
27.
go back to reference Wringe A, Cataldo F, Stevenson N, Fakoya A. Delivering comprehensive home-based care programmes for HIV: a review of lessons learned and challenges ahead in the era of antiretroviral therapy. Health Policy Plan. 2010;25(5):352–62.CrossRefPubMed Wringe A, Cataldo F, Stevenson N, Fakoya A. Delivering comprehensive home-based care programmes for HIV: a review of lessons learned and challenges ahead in the era of antiretroviral therapy. Health Policy Plan. 2010;25(5):352–62.CrossRefPubMed
28.
go back to reference Lees S, Kielmann K, Cataldo F, Gitau-Mburu D. Understanding the linkages between informal and formal care for people living with HIV in sub-Saharan Africa. Glob Public Health. 2012;7(10):1109–19.CrossRefPubMed Lees S, Kielmann K, Cataldo F, Gitau-Mburu D. Understanding the linkages between informal and formal care for people living with HIV in sub-Saharan Africa. Glob Public Health. 2012;7(10):1109–19.CrossRefPubMed
29.
go back to reference Campbell C, Nair Y, Maimane S, Sibiya Z. Supporting people with AIDS and their carers in rural South Africa: possibilities and challenges. Health Place. 2008;14(3):507–18.CrossRefPubMed Campbell C, Nair Y, Maimane S, Sibiya Z. Supporting people with AIDS and their carers in rural South Africa: possibilities and challenges. Health Place. 2008;14(3):507–18.CrossRefPubMed
30.
go back to reference Akintola O. What motivates people to volunteer? the case of volunteer AIDS caregivers in faith-based organizations in KwaZulu-Natal, South Africa. Health Policy Plan. 2011;26(1):53–62.CrossRefPubMed Akintola O. What motivates people to volunteer? the case of volunteer AIDS caregivers in faith-based organizations in KwaZulu-Natal, South Africa. Health Policy Plan. 2011;26(1):53–62.CrossRefPubMed
31.
go back to reference Greenspan JA, McMahon SA, Chebet JJ, Mpunga M, Urassa DP, Winch PJ. Sources of community health worker motivation: a qualitative study in Morogoro Region, Tanzania. Human Resour Health. 2013;11:52.CrossRef Greenspan JA, McMahon SA, Chebet JJ, Mpunga M, Urassa DP, Winch PJ. Sources of community health worker motivation: a qualitative study in Morogoro Region, Tanzania. Human Resour Health. 2013;11:52.CrossRef
32.
go back to reference Takasugi T, Lee AC. Why do community health workers volunteer? a qualitative study in Kenya. Public Health. 2012;126(10):839–45.CrossRefPubMed Takasugi T, Lee AC. Why do community health workers volunteer? a qualitative study in Kenya. Public Health. 2012;126(10):839–45.CrossRefPubMed
33.
go back to reference Akintola O. Perceptions of rewards among volunteer caregivers of people living with AIDS working in faith-based organizations in South Africa: a qualitative study. J Int AIDS Soc. 2010;13:22.CrossRefPubMedPubMedCentral Akintola O. Perceptions of rewards among volunteer caregivers of people living with AIDS working in faith-based organizations in South Africa: a qualitative study. J Int AIDS Soc. 2010;13:22.CrossRefPubMedPubMedCentral
34.
go back to reference de Wet K. Redefining volunteerism: the rhetoric of community home-based care in (the not so new) South Africa. Comm Dev J. 2012;47(1):111–25.CrossRef de Wet K. Redefining volunteerism: the rhetoric of community home-based care in (the not so new) South Africa. Comm Dev J. 2012;47(1):111–25.CrossRef
35.
go back to reference Maes K. Volunteerism or labor exploitation? harnessing the volunteer spirit to sustain AIDS treatment programs in Urban Ethiopia. Hum Organ. 2012;71(1):54–64.CrossRefPubMedPubMedCentral Maes K. Volunteerism or labor exploitation? harnessing the volunteer spirit to sustain AIDS treatment programs in Urban Ethiopia. Hum Organ. 2012;71(1):54–64.CrossRefPubMedPubMedCentral
36.
go back to reference Mutale W, Ayles H, Bond V, Mwanamwenge MT, Balabanova D. Measuring health workers’ motivation in rural health facilities: baseline results from three study districts in Zambia. Human Resour Health. 2013;11(1):8.CrossRef Mutale W, Ayles H, Bond V, Mwanamwenge MT, Balabanova D. Measuring health workers’ motivation in rural health facilities: baseline results from three study districts in Zambia. Human Resour Health. 2013;11(1):8.CrossRef
38.
go back to reference Mbilinyi D, Daniel ML, Lie GT. Health worker motivation in the context of HIV care and treatment challenges in Mbeya Region, Tanzania: a qualitative study. BMC Health Serv Res. 2011;11:266.CrossRefPubMedPubMedCentral Mbilinyi D, Daniel ML, Lie GT. Health worker motivation in the context of HIV care and treatment challenges in Mbeya Region, Tanzania: a qualitative study. BMC Health Serv Res. 2011;11:266.CrossRefPubMedPubMedCentral
39.
go back to reference Mbindyo P, Gilson L, Blaauw D, English M. Contextual influences on health worker motivation in district hospitals in Kenya. Implementation Sci. 2009;4:43.CrossRef Mbindyo P, Gilson L, Blaauw D, English M. Contextual influences on health worker motivation in district hospitals in Kenya. Implementation Sci. 2009;4:43.CrossRef
40.
go back to reference Gopalan SS, Mohanty S, Das A. Assessing community health workers’ performance motivation: a mixed-methods approach on India’s Accredited Social Health Activists (ASHA) programme. BMJ Open. 2012;2:5.CrossRef Gopalan SS, Mohanty S, Das A. Assessing community health workers’ performance motivation: a mixed-methods approach on India’s Accredited Social Health Activists (ASHA) programme. BMJ Open. 2012;2:5.CrossRef
41.
go back to reference Franco LM, Bennett S, Kanfer R. Health sector reform and public sector health worker motivation: a conceptual framework. Soc Sci Med. 2002;54(8):1255–66.CrossRefPubMed Franco LM, Bennett S, Kanfer R. Health sector reform and public sector health worker motivation: a conceptual framework. Soc Sci Med. 2002;54(8):1255–66.CrossRefPubMed
42.
go back to reference Hanefeld J, Musheke M. What impact do global health initiatives have on human resources for antiretroviral treatment roll-out? a qualitative policy analysis of implementation processes in Zambia. Human ResourHealth. 2009;7:8. Hanefeld J, Musheke M. What impact do global health initiatives have on human resources for antiretroviral treatment roll-out? a qualitative policy analysis of implementation processes in Zambia. Human ResourHealth. 2009;7:8.
43.
go back to reference Walsh A, Mulambia C, Brugha R, Hanefeld J. “The problem is ours, it is not CRAIDS’ ”. Evaluating sustainability of Community Based Organisations for HIV/AIDS in a rural district in Zambia. Globalization Health. 2012;8:40.CrossRefPubMedPubMedCentral Walsh A, Mulambia C, Brugha R, Hanefeld J. “The problem is ours, it is not CRAIDS’ ”. Evaluating sustainability of Community Based Organisations for HIV/AIDS in a rural district in Zambia. Globalization Health. 2012;8:40.CrossRefPubMedPubMedCentral
44.
go back to reference National AIDS Council. Zambia national minimum standards for community and home-based care organisations. Lusaka: Ministry of Health of Zambia; 2007. National AIDS Council. Zambia national minimum standards for community and home-based care organisations. Lusaka: Ministry of Health of Zambia; 2007.
45.
go back to reference Kielmann K, Butt L. Just shifting tasks? The moral economy of HIV care work on the periphery. Paper presented at 2nd International Conference for the Social Sciences and Humanities in HIV. Paris; 2013 Kielmann K, Butt L. Just shifting tasks? The moral economy of HIV care work on the periphery. Paper presented at 2nd International Conference for the Social Sciences and Humanities in HIV. Paris; 2013
46.
go back to reference Chela CM, Siankanga ZC. Home and community care: the Zambia experience. Aids. 1991;5 Suppl 1:S157–61.PubMed Chela CM, Siankanga ZC. Home and community care: the Zambia experience. Aids. 1991;5 Suppl 1:S157–61.PubMed
47.
go back to reference Kielmann K, Cataldo F. Tracking the rise of the “expert patient” in evolving paradigms of HIV care. AIDS Care. 2010;22 Suppl 1:21–8.CrossRefPubMed Kielmann K, Cataldo F. Tracking the rise of the “expert patient” in evolving paradigms of HIV care. AIDS Care. 2010;22 Suppl 1:21–8.CrossRefPubMed
Metadata
Title
‘Deep down in their heart, they wish they could be given some incentives’: a qualitative study on the changing roles and relations of care among home-based caregivers in Zambia
Authors
Fabian Cataldo
Karina Kielmann
Tara Kielmann
Gitau Mburu
Maurice Musheke
Publication date
01-12-2015
Publisher
BioMed Central
Published in
BMC Health Services Research / Issue 1/2015
Electronic ISSN: 1472-6963
DOI
https://doi.org/10.1186/s12913-015-0685-7

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