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Compensation for Caregivers: An exploratory study on roles and attitudes in respect

of caregiver support

By: Debbie Budlender and Nina Hunter

For:

Tearfund

January 2014

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Table of contents

Acronyms.. ...................................................................................................................................... 0  Executive summary ....................................................................................................................... 50  

Introduction ............................................................................................................................... 50  Literature review ....................................................................................................................... 05  International non-governmental organisation interviews .......................................................... 50  Zambia case study ..................................................................................................................... 60  Zimbabwe case study ................................................................................................................ 70  Going forward ........................................................................................................................... 80  

Introduction ................................................................................................................................... 10  Background ............................................................................................................................... 10  Methodology ......................................................................................................................... 1100  Challenges in obtaining information ..................................................................................... 0012  Structure of the report ........................................................................................................... 0012  

Literature review ....................................................................................................................... 0013  UK Consortium on AIDS and International Development documents ................................. 0013  Other documents ................................................................................................................... 0018  

International non-governmental organisations ......................................................................... 0022  Catholic Agency for Overseas Development ........................................................................ 0022  Help the Hospices .................................................................................................................. 0024  mothers2mothers ................................................................................................................... 0025  Save the Children .................................................................................................................. 0026  Tearfund ................................................................................................................................ 0028  Voluntary Service Overseas .................................................................................................. 0030  World Vision ......................................................................................................................... 0032  

Zambia case study ..................................................................................................................... 0037  Relevant country policy ........................................................................................................ 0037  Other contextual information .................................................................................................... 38  Voices from funded projects in Zambia ................................................................................ 0041  

Mwazwini Home Based Care ........................................................................................... 0041  St Peters Home Based Care .............................................................................................. 0044  General discussion ............................................................................................................ 0046  

Zimbabwe case study .................................................................................................................... 46  Relevant country policy ............................................................................................................ 46  Country contextual information ............................................................................................ 0048  Voices from funded projects in Zimbabwe ........................................................................... 0050  

Family AIDS Caring Trust ................................................................................................ 0050  Zimbabwe National Network of People living with HIV ................................................. 0052  Island Hospice, Harare ...................................................................................................... 0053  General discussion ............................................................................................................ 0054  

Going forward ........................................................................................................................... 0055  References ................................................................................................................................. 0058  Interviewees .............................................................................................................................. 0060  

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INGO interviewees ................................................................................................................ 0060  Government interviewees ...................................................................................................... 0060  DFID interviewee .................................................................................................................. 0060  

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Acronyms AIDS Acquired Immunodeficiency Syndrome ART Anti-retroviral therapy CAFOD Catholic Agency for Overseas Development CBO CCC

Community-based organisation Community care coalitions

CHA Community health assistant CHAZ Churches Health Association of Zambia CHBC DATF

Community Home Based Care District AIDS Task Force

DFID Department for International Development EPWP Expanded Public Works Programme FACT Family AIDS Caring Trust FBO Faith-based organisation FGD Focus group discussion GEMSA HtH

Gender and Media Southern Africa Help the Hospices

HBC Home-based care HIV Human immunodeficiency virus INGO MDGs

International non-governmental organisation Millennium Development Goals

MoH Ministry of Health MoHCW Ministry of Health and Child Welfare m2m mothers2mothers NAC National AIDS Council (Zimbabwe) NGO Non-governmental organisation PEPFAR OVC PC

President’s Emergency Fund for AIDS Relief Orphans and other vulnerable children Palliative care project

RAISA RDC

Regional AIDS Initiative of Southern Africa Rural District Council

SC Save the Children TB Tuberculosis Tearfund The Evangelical Alliance Relief Fund UN United Nations UNAIDS Joint United Nations Programme on HIV/AIDS US United States VSO Voluntary Service Overseas WV World Vision WVI World Vision International ZNNP+ Zimbabwe National Network of People living with HIV

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Executive summary Introduction  This paper presents the composite report of a study of compensation of caregivers providing home-based care (HBC) in respect of HIV and AIDS (human immunodeficiency virus and acquired immunodeficiency syndrome) and other diseases and conditions. The study was commissioned by The Evangelical Alliance Relief Fund (Tearfund) on behalf of the Care and Support Initiative of the United Kingdom Consortium on AIDS and International Development (now known as STOPAIDS), a UK-based network of more than 80 not-for-profit, faith-based and academic agencies. The objectives of the study were to explore the understanding, practices and attitudes of international and local non-governmental organisations (NGOs) towards caregiver support, in terms of caregiver retention, support and compensation. Zambia and Zimbabwe were chosen for case studies because these two countries were those in which the largest number of consortium members were or had been active. With each of the two countries, two projects, representing interventions supported by different international non-governmental organisations (INGOs), were chosen as project case studies.

Literature  review  A brief literature review confirmed that the consortium had been concerned about care as the ‘forgotten pillar’ of the HIV response for some years and had, in particular, been pointing to the need for support and compensation to secondary caregivers – those providing care to others in the community beyond their family. At times these documents used a strong language of rights, for example going so far as to assert that caregivers have a ‘right to a living wage for their work’. The documents discuss and advocate for a range of other forms of compensation beyond a wage, and suggest the roles of different actors in ensuring that there is adequate compensation and support. The literature review also quotes the recent report of the United Nations special rapporteur on extreme poverty and human rights that asserts the need to shift from ‘reliance on market and voluntary provision of care that is informal and exploitative’. It cites a recent four-country research project of the Caregivers Action Network that explores the role of ‘informal’ community caregivers in expansion of HIV prevention and treatment and primary health care in the context of rapid scale-up of anti-retroviral therapy (ART).

International  non-­‐governmental  organisation  interviews  The research included interviews to document the approaches described by relevant representatives of INGOs in respect of their support for HIV-related caregiving in Zambia and Zimbabwe. The interviews with the representatives revealed that only one of the INGOs had provided for financial compensation for secondary community caregivers. Another planned to provide compensation when funding was granted for the planned project, although the amount was below the level recommended by government. Two of the INGOs reported providing for some type of in-kind support. In contrast to the few mentions of financial and in-kind compensation, all INGOs described providing logistic and material support to caregivers, and this generally took the form of transport equipment, uniforms and care kits or some of their

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contents. There were also references to transport allowances, but this seemed to be available only in particular cases, or for particular purposes such as training. For the most part, these items cannot rightly be considered as compensation, as they are tools required to perform the work effectively. If anything, they represent a form of reimbursement. At least four of the eight INGOs reported that they provided for some sort of support (other than care) for patients and their families. INGO informants stated that this support was generally provided through the caregivers, and in most cases only for the neediest patients. All but one of the INGOs reported that they provided some sort of emotional or psychosocial support for caregivers. This most often took the form of regular meetings, but one INGO saw social protection-type support – such as burial society, savings and lending schemes, and income-generation activities – as forming part of emotional support. All INGOs stated that caregivers received some sort of training or capacity building. Several referred to both initial and follow-up training. In most cases at least some of the training was certificated. However, it is not clear to what extent the certificates would enable the person to seek employment outside of that particular project or home-based caregiving more generally. Finally, INGOs reported various other forms of support and this included references to support for income generation.

Zambia  case  study  Zambia has National Minimum Standards for Community and Home Based Care Organisations which sets out the ‘principles and steps for which home-based care organisations must strive in order to improve on the quality of care and support offered to the client’. The guidelines could thus be interpreted as aspirational rather than firm requirements. However, the document states that the standards will be ‘enforced’. One of the five categories relates to human resources, and this category includes standards relating to retaining staff and caregivers as well as capacity building. The standards do not include a stipend or wage, but do refer to various other forms of support and rewards. They also require that organisations working within a given area ‘coordinate to harmonize reward schemes for caregivers’. Representatives of government and a development partner described the range of different categories of community caregivers, as well as pilot projects and plans currently being implemented. The information provided was sometimes contradictory and painted a complicated picture. The two community-based projects selected as case studies in Zambia were Mwazwini Home Based Care (supported by Voluntary Services Overseas (VSO)) and St Peters Home Based Care (supported by Catholic Agency for Overseas Development (CAFOD)). There were many similarities across the two case study projects, including the absence of educational requirements for recruitment, minimal training after the initial basic training, deterioration in the compensation provided to caregivers, attempts to provide support for income-generation activities, and a changing profile and needs of patients cared for. The tasks done by caregivers for the two projects were very similar. The absence of follow-up training was particularly worrying given the widespread acknowledgment of the changing nature of the care needed and thus, presumably, the skills and knowledge needed by caregivers. Both organisations had caregivers who had stopped caregiving, and for both the issue of lack of, or diminished, compensation emerged as a key reason for caregivers stopping the work. In St

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Peters, the more overtly faith-based project, caregivers were clear that compensation should take a monetary form, while in Mwazwini caregivers emphasised the need for compensation in the form of food. Both organisations had provided assistance with income-generating activities. It is unclear to what extent these were intended to support the project and to what extent to support the caregivers. The reports on the success or otherwise of the income-generating activities were mixed.

Zimbabwe  case  study  Zimbabwe’s National Community and Home Based Care Caregiver Policy of 2011 covers caregivers employed by/working for government institutions as well as those employed by/working for organisations. The document lists roles, responsibilities and attributes of caregivers, roles and responsibilities of the implementing organisations and institutions, and rights of ‘community secondary’ caregivers. The rights include, among others, training and development, psychosocial support ‘to relieve burnout’ and access to bereavement counselling where necessary. The section on recognition and retention of caregivers requires that caregivers be informed about and benefit from an incentive ‘structure’ that includes a minimum monthly package of specified items including basic food items, Vaseline and soap to the value of US$15; consideration for recruitment into the organisation when opportunities arise; other in-kind incentives which the organisation is able to provide (with the proviso that tools such as bicycles, uniforms, stationery and transport to and from work should not be considered as incentives); free medical treatment at the clinics and hospitals to which they are affiliated; and, where possible, support in respect of income-generation activities. The national coordinator for treatment, care and support employed by the National AIDS Council (NAC) of Zimbabwe described a range of categories of community caregivers, including secondary caregivers who provide HBC and who are linked to health services at the primary health care level. The coordinator said that the government regards community caregivers as volunteers, not as workers (employees). It therefore needs to be clear that ‘they are not like the worker who gets a salary, but [nevertheless] volunteers do need to be paid for the work they are doing’. The case study organisations in Zimbabwe are Family AIDS Caring Trust (FACT) (supported by Tearfund Zimbabwe) and Zimbabwe National Network of People Living with AIDS (ZNPP+) (supported by World Vision Zimbabwe). The research also gathered information on the caregiver compensation and support practices of Island Hospice, which provides training for FACT caregivers but also itself manages caregiving projects. Both FACT and ZNPP+ came into being in response to the AIDS pandemic. Both had since expanded their scope to include other chronic illnesses such as tuberculosis (TB), cancer, diabetes, epilepsy and hypertension. The shift is probably more marked for FACT, especially within the palliative care (PC) project. In addition, the degree of formalisation and professionalisation differed, with ZNPP+ less formal and professionalised than FACT (and Island Hospice). ZNPP+ caregivers were less supported in terms of the various forms of compensation and support investigated in the study. However, there had reportedly been zero turnover among ZNPP+ caregivers, while some caregivers had left FACT and others had thought of doing so.

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This almost certainly reflects the ZNPP+ caregivers’ status as people living with HIV, and the other forms of support – perhaps not directly related to their caregiving role – that they received from ZNPP+ and each other.

Going  forward  The case studies of the organisations in the two countries spanned a range of different projects. Nevertheless, there were many consistent messages across projects, as follows:

• The nature of caregiving has changed with the availability of ART. Caregivers have faced new tasks. It seems that in many cases they might not have been adequately trained for these tasks, and may even not be the best people to do all the tasks.

• Availability of funding has decreased markedly. In some cases this deprioritisation of care funding reflects the perception that care is no longer needed in the same way. In other cases it reflects a shift in focus of major donors to ‘systems strengthening’ rather than funding of direct delivery.

• The limited past support and compensation previously available for caregivers has been further curtailed. The reduction ranged from provision of food to availability of regular training.

• All projects were said to provide initial basic training. However, in most cases it seemed that regular training was not provided to the extent planned or desired.

• Emotional support was barely mentioned by caregivers in the case study projects, although it was highlighted by all INGO informants.

• Across all projects, caregivers expressed a desire to receive monetary payments. They expressed unhappiness at seeing others being paid while they were not.

• Financial and in-kind compensation to caregivers was not mentioned frequently by INGOs and case study organisations. Logistic and material support were far more frequently mentioned. This suggests that INGOs and country organisations focused their contribution more on the work of caregivers than on caregivers’ well-being.

• Several organisations had supported income-generation projects for both caregivers and patients. The reported results of this assistance were mixed. Overall, it seems that income-generation support is not a quick and easy fix.

Despite all these constraints and limited (if any) compensation, many caregivers continued with their tasks and continued to gain pleasure from improving the well-being of fellow community members. Such perseverance was most likely where caregivers had personal reasons for continuing, such as religious faith and conviction or the benefits for their own status as people living with HIV which they derived from the project. In addition to the themes summarised above, the research highlighted a range of contradictions and complexities. These included the following:

• a mismatch between what is contained in country policies and what is found on the ground;

• a mismatch between the compensation and support that INGOs report is provided to caregivers and what is found on the ground;

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• a mismatch between what is reported by different key informants, such as those from government and development partners;

• a wide range in the type and extent of support provided by INGOs to the local caregiving projects which they report they support (which then implies a wide range in the extent to which INGOs can influence the support and compensation provided to caregivers);

• a multiplicity of types of caregivers and ongoing expansion of understanding of what ‘care’ involves

HBC in the narrow sense was initially introduced in response to the inability of the formal health system in developing countries affected by HIV and HIV-related diseases to respond to the need for care of patients. In essence, the HBC caregivers were performing a role that should have been performed by the formal health system. It is recognition of this fact that constitutes one of the strongest motivations for adequate compensation to be given to community caregivers. If ART has changed the scenario, with fewer desperately ill and dying patients, the need for and role of caregivers may need to be reconsidered.

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Introduction Background  This paper presents the composite report of a study of compensation of caregivers providing HBC in respect of HIV and HIV-related illnesses and other diseases and conditions. The study was commissioned by Tearfund on behalf of the UK Consortium on AIDS and International Development, a UK-based network of more than 80 not-for-profit, faith-based and academic agencies. The objectives of the study were to explore the understanding, practices and attitudes of international and local NGOs towards caregiver support, in terms of caregiver retention, support and compensation. The research sought to highlight challenges and examples of (perceived) good practice of caregiver support for intermediaries working in HIV care and support programming. A particular focus was to be given to INGOs working in collaboration with local country NGOs, given that such organisations are the members of the UK Consortium on AIDS and International Development. Zambia and Zimbabwe were chosen for case studies because these two countries were those in which the largest number of consortium members were or had been active. With each of the two countries, two projects, representing interventions supported by different INGOs, were chosen as project case studies. The objectives of the country case studies were to document the design and practice in respect of caregivers of two projects and explore staff and caregiver perceptions of the financial and other support caregivers received within the project. The study responded to concern among consortium members that ‘care and support’ had become the ‘forgotten pillar’ of the 2006 UN Political Declaration on HIV, which committed to universal access to prevention, treatment and care and support. It also responded to perceived increasing interest, including among international development agencies such as the United Nations agencies, about care work – and particularly unpaid care work. (As seen below, this is not necessarily reflected in increased funding for care work.) The terms of reference for the research noted that the 2004 Joint United Nations Programme on HIV/AIDS (UNAIDS) report on the global HIV epidemic estimated that in sub-Saharan Africa, around 90 per cent of care for people living with HIV and HIV-related diseases was carried out in the home by family or community-based caregivers. In line with common usage, we refer to the family caregivers as ‘primary’ caregivers and the community-based non-family caregivers as ‘secondary’ caregivers or ‘community’ caregivers. It is the role of and compensation for the secondary/community caregivers that is the focus of this study. The terms of reference noted that the work of both primary and secondary caregivers was recognised as being of critical importance in terms of achieving the desired increased demand for health services at the community level, extending the reach of health service delivery, providing care where people are most comfortable, often in the home, and reducing the financial and human resource burden of government. However, there was less evidence and understanding of the extent and nature of community-based care and support. There was also limited consideration of the best approach for supporting and compensating caregivers. In the words of the terms of references, these gaps had ‘led to haphazard approaches to address caregiver support and an inadequate evidence-base for promoting caregiver compensation among development partners (i.e. donors) and national governments’.

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The research was initially framed on an understanding that there would typically be several layers of actors in respect of community caregiving. Thus the caregivers would be recruited and ‘employed’ (but generally without monetary compensation) by a community-based organisation (CBO), which would be supported by a local NGO intermediary, which would in turn be supported by an INGO, which would receive funding from various sources, including international donors. The research was thus seen as focusing on the role of both the international and local NGO intermediaries. In line with this focus, there was an interest in issues of accountability of local NGOs to INGOs, and of INGOs to their own donors in respect of compensation for caregivers. In practice, the initial interviews with INGOs suggested that there was not necessarily separate local NGOs and CBOs, with the link between the INGOs and the implementing partners more direct than initially assumed.

Methodology  A multi-method approach was adopted, including:

• a limited literature review of core documents produced by the consortium and other key actors on compensation for caregivers, as well as documents referred to by INGO interviewees;

• in-depth interviews with eight representatives of INGOs (CAFOD, Help the Hospices, mothers2mothers (m2m), Save the Children (SC), Tearfund and VSO), providing support for caregiving in Zambia and Zimbabwe. More than one person was interviewed for some INGOs, for example in cases where there was a separate person for each country;

• in-depth interviews with a key government official in each country, and with a representative of the Department for International Development (DFID) as a key donor in Zambia. Attempts to secure an interview with a development partner representative for Zimbabwe were unsuccessful;

• country case studies in Zambia and Zimbabwe of projects supported by different INGOs. The plan was to cover two projects (and thus local organisations) per country, but the Zimbabwe case study also collected information on Island Hospice, an NGO that provides training for caregivers of one of the case studies but also itself employed caregivers.

Local researchers were contracted to conduct the Zambia and Zimbabwe case studies (Joseph Simbaya and Rodwell Chaitezvi respectively). In the case of Zambia, the contracted researcher did not complete the task and one of the lead researchers thus wrote up the case study from available transcripts. To enhance comparability, the same interview and focus group research instruments were used for all the case studies. Consortium partners were engaged at various steps in the research. Shannon Thomson of Tearfund played a lead role in guiding and supporting the research. She ensured that other consortium members were informed about and comfortable with the terms of reference and choice of researchers. Some consortium members also saw and commented on interim products and, in particular, the write-up of the INGO interviews. Shannon used the opportunity of a STOPAIDS Caregiving Seminar in November 2013 to present interim findings from the country case studies.

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Challenges  in  obtaining  information  The INGOs selected for interviews were all members of the network. This no doubt contributed to the researchers’ experience that the majority of INGO informants were accommodating and supportive of the interview process and generous with their time and input (including follow-up questions via email). Nevertheless their generosity was much appreciated, especially considering the number of questions and the time interviews took to complete. However, busy work schedules that involved international travel made it difficult to get a response from or set up interview times with several informants, and at times impacted on interview appointments. Two of the INGO interviews had to be undertaken via email because of these challenges. For one of these organisations the recommended interviewee was unwilling to answer all the questions because of time constraints, and another employee from the same organisation therefore answered the more ‘general’ questions relating to the organisation, leaving only the programme-specific questions for the original interviewee to answer. A further interview was constrained by the informant’s lack of willingness to provide information. The fact that this organisation had scaled down caring activities might have meant that there was less interest within the INGO in the findings of the research. It was relatively easy to set up interview times with government informants, with both informants being accommodating in terms of their time. However, there were a number of questions that one of these informants could not answer (perhaps someone else in the government department would have been better placed to answer the questions), and despite being promised, follow-up information was not forthcoming. The DFID interviewee who participated was helpful and cooperative and also willingly answered follow-up questions via email. Although an interview time was set up with the second development partner representative, this was not honoured. Interview questions sent subsequently via email did not elicit answers, despite several promises of a reply. For the case study aspect of the study, the researchers were reliant on the selected INGO informants to identify appropriate partners and to be the link between the researchers and their partners. The process was challenging for some of the case studies. One INGO was hesitant to put us in contact with her organisation’s partners due to a concern about the time the case study would take from the already overloaded partner. This was no longer an impediment once the time requirements and benefits to the partner organisation were outlined. Similarly, another INGO informant required a detailed explanation of the case study phase of the research before passing us onto his country level counterparts. Finally, one INGO did not respond to repeated email requests, but provided information after an (international) telephonic request.

Structure  of  the  report  The report largely follows the logic of the methodology, with separate sections for the limited literature review, INGO profiles, and country case studies. The information from the interviews with government officials and development partner representatives is included in the country case studies. The paper ends with a section that discusses the findings and offers tentative recommendations for further discussion within the consortium and beyond. A second shorter report, ‘Compensation for caregivers: Good practice recommendations’, describes the various forms of compensation provided by INGOs and case study organisations and puts forward good practice recommendations.

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Longer interim reports on most of the components were produced during the course of the study. To avoid an over-long document, this report does not contain all the detail of the interim reports nor the research instruments. Interested readers can obtain copies of these from Tearfund.

Literature review UK  Consortium  on  AIDS  and  International  Development  documents  The UK Consortium’s ‘Roadmap to Universal Access to 2015: Consensus statement’, prepared for an international conference in November 2010, defines comprehensive care and support to include ‘clinical, psychosocial, social and economic, legal and human rights services and support to people living with and affected by HIV and their caregivers’ (emphasis added) (UK Consortium, 2010). The document does not distinguish between primary and secondary caregivers, and the statement is likely to be interpreted as referring to primary caregivers. The consortium’s 40-page document on ‘Care & Support: The Forgotten Pillar of the HIV Response’ (UK Consortium, 2011a) of the following year highlights how care and support are generally overlooked and underemphasised by international institutions, donors and ‘regional bodies’. In particular, the work of ‘community and family carers and home-based care organisations has remained largely invisible’ (page 1). The seven ‘key messages’ include the following (page 2), all of which indirectly relate to our topic but none of which directly addresses it:

Ensure that quality care and support and carers [defined to include both primary and secondary] are fully recognised and reflected in the international, regional and national policies and strategies on HIV and other relevant sectors. Identify the gaps in evidence and conduct research on the need for and impact of care and support and draw together best practice on effective comprehensive care and support services that realises the rights of carers.

In the section that discusses the link between care and support and the Millennium Development Goals (MDGs), provision of compensation to women carers is seen as one way in which Goal 3 can be advanced. A section that summarises the different elements of a comprehensive HIV care and support response includes ‘caring for the carers’ (page 6), which is described as including psychosocial support, training and supervision, essential equipment and safety supplies; socio-economic support, nutritional support and legal care and support. A full page (page 12) is devoted to economic support for caregivers. It highlights the opportunity cost of providing care and suggests that ignoring this has ‘created an unsustainable cycle of deprivation and exploitation that has continued for decades’. However, it acknowledges that some governments and donors have ‘finally’ begun to address the problem. The document does not advocate for direct payment of primary caregivers, but instead suggests economic support through social protection of various forms. For secondary caregivers it makes similar observations to the other consortium documents, referring to the expenses they incur, and their lack of choice as to whether they work voluntarily (ie without pay). The document uses a strong language of rights, and asserts, in particular, their ‘right to a living wage for their work’. It suggests that a ‘clear path’ must be found towards such proper remuneration. While work on this

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is done, secondary caregivers should immediately be protected through limitation of unpaid work to 20 hours per week to ensure time for their own income-earning activities; provision of training, savings, loans and other assistance for income-generation; provision of regular training, supervision, equipment and clothing; and assistance with transport where necessary. For the medium to long term it recommends that governments, donors and NGOs work together to ensure a ‘minimum stipend that meets all their care costs and is standardised nationally among NGOs, governments and donors’, establishment of a career path with accredited training; inclusion of more men as caregivers so as to change understanding of gender roles, and recognition of secondary caregivers as community health workers who are part of the broader health system. (The medium- to long-term vision seems to fall short of the ‘living wage’ advocated for on the same page. The final point on recognition as health workers is narrow in restricting the conception to health.) A later section of the report highlights the potential of caregivers’ organising, quoting a member of the GROOTS network in this respect. The one-page extract from a speech by a GROOTS caregiver leader includes the following sentences, which refer to both financial aspects of compensation and participation in decision-making as a form of recognition and power (page 18):

One of the biggest gaps is resourcing the care and support work and also supporting the grassroots care-givers. Care-givers usually have to struggle to resource their care-giving work at the community level. We have another gap on the lack of recognition of care-givers. We are recognised at service delivery level, but when it comes to decision making at the health facility, decision making and planning about HIV/AIDS in constituency committees, sometimes there is a gap.

A later extract from a speech by a primary caregiver places greater emphasis on the need for support and/or compensation in the form of training, cash transfers, shelter and sanitation, nutrition, health and education. Another UK Consortium document of 2011 (UK Consortium, 2011b) represents the printed version of the product of a consultation that took place at the November 2010 Conference on ‘HIV care and support: A roadmap to universal access’. The draft developed through the consultation was then further developed by a technical advisory group with representatives from UNAIDS, United Nations Children’s Fund, World Health Organisation, Global Fund to Fight AIDS, TB and Malaria (United States), President’s Emergency Fund for AIDS Relief (PEPFAR), DFID and civil society stakeholders. The 15 guiding principles for HIV care and support includes one that could be considered directly relevant for the research, namely (page 3):

• Ongoing training, supervision, and support services for human resources for health, social welfare and community caregivers.

The document includes tables giving targets for different role players, with a space for progress to be noted. Targets that seem potentially relevant for our purposes are the following: Funders:

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• Ensure neglected aspects of care and support receive adequate funding, including organizing caregivers locally, nationally, globally, addressing the care and support needs of neglected groups, including… caregivers themselves (both adult and child)

• Support and publish research that draws together good practice from organisations that provide effective comprehensive care

National governments:

• Convene consultative processes (including secondary caregivers and adult and child primary carers) to develop comprehensive policy guidance on integration of home-based caregivers into health systems through referrals, supervision, task shifting, funding, and other mechanisms

• Define the work of primary and secondary caregivers and develop remuneration and social protection models for inclusion in policies by 2013

Civil society:

• Work with government and communities to: support innovative programmes, e.g. to increase the involvement of men and boys in care-providing provide regular training for primary and secondary caregivers that enables them to provide good quality care and support and reduces their risk of exposure

• Civil society organisations create and/or strengthen care and support alliances to enable primary and secondary care-providers to share knowledge, skills and resources; and to advocate with government to undertake their support responsibilities for community caregivers

• NGOs and CBOs conduct and analyze research on existing good practice on remuneration of caregivers to determine programme of action

A UK Consortium document of March 2012 (UK Consortium, 2012) focuses directly on ‘remuneration and social protection’ for caregivers. Like other documents it discusses both primary and secondary caregivers, but it pays more explicit attention to the latter than many other documents. The document makes a clear proposal that (page 2):

governments, donors and international institutions should include costs and strategies for the remuneration of caregivers in budgets, programme plans, and technical guidance related to their role in the response to HIV. Compensation for primary caregivers should take the form of social protection and remuneration for secondary caregivers should take the form of salaries.

The document defines secondary caregivers as community caregivers and health workers working, whether on a paid or unpaid basis, in clinics, NGOs, faith-based organisations (FBOs) and CBOs. While most conduct home visits, this is not seen as a necessary characteristic to be defined as a secondary caregiver. This broad definition would include ‘ordinary’ health services staff such as doctors and nurses. The document observes that many secondary caregivers are also primary caregivers to members of their own families.

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The document argues that lack of remuneration of caregivers can be seen as a form of ‘structural discrimination’ (page 3) against women as they do the bulk of caregiving work, akin to other rights abuses such as unequal access to property, inheritance and early marriage. It acknowledges that the nature of caregiving changes when people who are ill have access to ART. However, the need for caregiving does not decrease as many people who need ART still do not receive it, and those who do receive it still require a wide range of other support services. The document argues that while secondary caregivers are generally seen as non- or para-professionals who provide basic primary health care and the like, in reality they provide a far wider range of services. Like other documents, this one cites the study of 1,366 secondary caregivers in six countries coordinated by the Huairou Commission (Budlender, 2009) to illustrate how caregivers – whether or not they receive stipends – are forced to use their own resources to cover transport and other costs. It notes that the low value attached to the work of other secondary caregivers by ‘formal healthcare workers’ (page 6) as well as exposure to illness, death and HIV negatively affects the caregivers’ physical and emotional health and well-being, and can also result in burnout (and thus attrition). However, the document acknowledges that the caregivers also often derive great satisfaction from their work. The brief cites a 2010 study of community health workers in five countries under the auspices of the World Health Organisation and Global Health Workforce Alliance. This study reportedly argued for a range of incentives for community health workers. However, it shied away from promoting financial incentives on the grounds that donor funding was unsustainable and governments did not (as yet) have the necessary funds for this. In discussing incentives, the brief refers to training, supervision, equipment, uniforms, counselling, transport support and reimbursement of expenses. It cites the Catholic Relief Service’s approach in respect of HIV support which encourages provision to volunteers through a ‘motivation package’ (page 9) that includes training and work materials, food, transport allowance, care for the caregiver activities, training, supervision and enabling access to credit and income-generation activities. There is also a case study of Ndola Ecumenical Hospice Association in Zambia, which provides its 33 home-based caregivers with maize meal, clothing, and an umbrella, in addition to initial and monthly training. In addition, the caregivers generate income for themselves through communal poultry farming. The brief notes that training, supervision and psychosocial support may well be incentives, but are also essential components of any programme that hopes to deliver good services to those in need. However, the study of 1,366 caregivers suggests that many had received minimal training. The brief acknowledges that many caregivers are driven to do this work by their religion or commitment to the community, and says that this should be encouraged. However, the brief notes that this cannot be an excuse for caregivers being made poorer than they already are by doing the work, meaning that – at the least – their expenses should be covered. In addition, however, it argues for support to be provided in respect of their livelihood activities, whether in the form of training for income-generation, savings schemes, access to credit, or something else. Training is again relevant here if it takes a form that can place the caregiver on a career path that can lead to a qualification and higher pay. Ethiopia’s Health Extension Worker Programme is cited as it provides for distance learning combined with practical training that leads to a registered nursing qualification. The brief notes that while many caregivers are called ‘volunteers’, this term may simply mean that they are unpaid, rather than that they do the work willingly without pay. It makes the strong statement that: ‘These caregivers have a right to a living wage as do all workers’ (page 10).

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However, it does not define a living wage. It also states that, given the economic constraints, many countries with HIV epidemics will not in the near future be able to afford this. It argues that economic constraints ‘should never be an excuse to avoid the issue. A clear and timebound path to remuneration is critical’ (page 6). The brief acknowledges that some NGOs provide stipends if money is available for this. It cites the Stephen Lewis Foundation which requires that all the programmes they fund provide a stipend for caregivers. The downside is the lack of certainty that donor funding will increase. Stipends are thus more ‘sustainable’ if the money is guaranteed by government, whether as an ordinary salary or as a payment on a public works programme. The brief cites South Africa as an example of a country with a national stipend for secondary caregivers provided through the Expanded Public Works Programme (EPWP). This is done by channelling money to the NGOs for which the caregivers work. The brief does not make explicit that many secondary home-based caregivers operate outside of the EPWP programme. It also does not acknowledge that there is now a minimum wage level for the EPWP that should help prevent severe differences in pay for (male-dominated) construction-type EPWP work and (female-dominated) caregiver-type EPWP work as suggested in the brief. The second example of successful stipends relates to health surveillance assistants in the much poorer country of Malawi. The programme provides for stipends of about US$80 per month for up to 10,000 assistants. The programme under which this was done was funded by DFID and the Global Fund. The brief discusses reasons why having government take over caregiver services may cause challenges. In particular, it cites fears on the part of organisations currently providing care that a government-led programme may be beset by bureaucracy and corruption that will reduce its effectiveness. Initiatives to provide for stipends might also run counter to requirements by the International Monetary Fund that public sector personnel expenditure be capped. Meanwhile, many donors will be reluctant to fund a recurring cost such as stipends on the basis that this will undermine hopes of sustainability. The brief suggests that the sustainability argument is flawed in that building human resources is an essential element of strengthening health systems, which many donors cite as their ultimate objective. This argument also ignores the recognition in the UNAIDS Treatment 2.0 approach and UNAIDS Strategic Investment Framework and elsewhere that care and support services and social protection are ‘both effective and cost efficient’ (page 12). The brief notes further that the costing of the Investment Framework does not make provision for remuneration of caregivers. The authors of the framework have, reportedly, claimed to be hampered by lack of reliable costing data and have called for detailed country-based country studies. The brief ends with recommendations for specified role players. The two of most interest from our perspective are the following (page 14):

The Global Fund to Fight AIDS, TB, and Malaria should strengthen guidance on remuneration of caregivers in the context of its Community Systems Strengthening agenda, and prioritise proposals which include sustainable remuneration policies for caregivers. The UN should play a leadership role calling for the remuneration of HIV caregivers as a strategy to reach MDG 3 and MDG 6, including holding governments accountable to commitments made in the outcome document of the 53rd Commission

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on the Status of Women on the theme ‘The equal sharing of the responsibilities between men and women, including caregiving, in the context of HIV and AIDS’.

An undated briefing for UNAIDS’ Michael Sidibé (UK Consortium, undated) ends with a sub-section on ‘Critical issues not being addressed’. The first issue raised in this section is ‘The role of caregivers – the unrecognised, unpaid and supported workforce’. The document reads as follows on this point:

The majority of caregivers receive very little or no financial support or remuneration for the work they do. The cost of care and loss of opportunity to pursue another livelihood has created an unsustainable cycle of deprivation and exploitation that has continued for decades. The role of family and community caregivers in the HIV response, particularly older women caregivers, has been recognised by UNAIDS for over a decade (in the 2001 Declaration, 2006 Political Declaration and Getting to Zero). Yet this recognition, has not been matched by direct recommendations or targets for support, and the work of caregivers, their impact on the HIV response and the impact providing care has on their lives has not been monitored.

The document recommends that UNAIDS research and make recommendations on a minimum package of support for both primary and secondary caregivers. The main body of the document focuses on the drawbacks of placing care and support within the same ‘strategic direction area’ as treatment (as is done in UNAIDS’ ‘Getting to Zero’ document). It argues that this placement tends to result in non-medical care and support being overlooked. The document also highlights the virtual absence of outputs, indicators and targets relating to home-based, palliative and psychosocial care in the UNAIDS Unified Budget, Results and Accountability Framework and other international frameworks.

Other  documents  The recent Report of the UN Special Rapporteur on extreme poverty and human rights (United Nations General Assembly, 2013: para 100) suggests in the following paragraph that there should be a move away from expecting caregivers to provide services without any monetary compensation:

…States should shift from a strategy of reliance on market and voluntary provision of care that is informal and exploitative to one that allows professional, decently paid and compassionate forms of care.

Community Caregivers (Caregivers Action Network, 2013) brings together evidence of such a shift (or lack of it) from a four-country research project on (primarily HIV-related) community- and HBC in Ethiopia, Malawi, South Africa and Zambia. The research objectives were to:

• explore changes in caregiving at the community level since the rapid scale-up of ART; • assess whether and how caregiving by informal caregivers at community level has been

integrated in the health system and recognised as part of primary health care;

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• investigate the role of caregivers in the expansion of HIV prevention and treatment and primary health care;

• assess the potential for complementary roles of formal and informal community caregiver programmes in the decentralisation of HIV treatment programmes

The report defines the term ‘community caregivers’ to include both primary and secondary caregivers. However, the research seems to have focused almost exclusively on secondary caregivers. The research found that within each country a large number of different terms might be used for the caregivers of interest. In Zambia, the terms found included treatment supporters, adherence support workers, lay counsellors, health promoters, community health advisers, outreach educators, community health representatives, peer health promoters, and peer health educators. These descriptions suggest that some of these might not necessarily undertake home visits. The document comments that the multiplicity of terms and ‘blurred distinctions’ between them was evident in both policy documents and the ‘minds of key actors’ to a larger extent in Zambia than in the other three countries. The document contests the use of the term ‘formal care’ to refer to health professionals and public health services and ‘informal care’ for unpaid caregivers in community home-based care (CHBC) programmes run by NGOs on the basis that the latter play an important role in the national health and social welfare systems. The terms are, however, used at some points in the report. The discussion of the definition of the term ‘palliative care’ notes that the definition has changed over time ‘in particular in resource-poor settings’. While previously the term referred to physical and psychosocial end-of-life care, the World Health Organisation expanded the definition to care that:

improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

On the ground, the definition has been further expanded to address a wider range of ‘client’ needs. The Worldwide Palliative Care Alliance argues that palliative care should begin early for individuals facing life-threatening illnesses and should include social as well as medical interventions, and should be ‘comprehensive’. Mirroring this broadening definition, the range of tasks done by community caregivers has expanded over time – sometimes beyond what the terms named above might suggest. For example, in both Ethiopia and Zambia the research found CHBC organisations providing assistance to beneficiaries in respect of farming and businesses. Across the four countries, 30 of the 46 respondent organisations provided some sort of livelihood support. Beyond the definitions described above, there are several themes within the report that are of direct interest for this research. The report notes that in Zambia, as in Ethiopia, NGOs tend to operate relatively independently of the government. At one point the report suggests that there is a ‘heritage of resistance’ to Ministry of Health (MoH) attempts to exert control. This might be partly explained by how the health system operates in Zambia, and the limited role of the government in rural service delivery. The MoH has a memorandum of understanding with the Churches Health Association

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of Zambia (CHAZ), an umbrella organisation of FBOs, in terms of which the ministry provides grants and seconds skilled health workers to the FBOs in respect of services provided through mission hospitals and other rural health facilities. Local and international NGOs also provide community health care services. A strong theme throughout the report is the efforts of the various country governments to expand government-run structures and systems through (often new cadres of) salaried staff employed by government. At one point the report describes this as a move from ‘community-based’ services to ‘community-oriented’ services. In the case of Zambia, government is, with assistance from donors, piloting the use of a new cadre of ‘community health assistants’ (CHAs). CHAs will be stationed at health posts, the most decentralised health service delivery point. Like in Malawi, but unlike in the other two countries, the research suggests that these workers will play a supervisory and coordinating role rather than themselves be direct providers of care. In so doing, they would contribute to formalising the links within the health system. The report suggests that in Zambia the CHAs are unlikely to be able to influence the way that large FBOs and NGOs that run clinics and hospitals organise their CHBC programmes. However, the MoH has plans to employ 5,000 CHAs in 2013. The report suggests that 80 per cent of the CHAs’ time is meant to be spent on prevention activities. This suggests that their role extends beyond coordination and supervision. Alternatively, it suggests that there might be lack of clarity as to whether these workers are primarily responsible for coordination of government and NGO activities or instead are responsible for delivery of services. The report predicts that tensions will result as government moves to employing ‘formal’ caregivers who receive regular wages or salaries. The report notes that governments will be unable to employ and pay the full number of caregivers needed and volunteer work will therefore still be necessary. However, the introduction of cadres of paid workers could erode the ethos of volunteerism and also result in reduced respect of those who are unpaid simply on the basis that their work is not financially rewarded. The report says that such tensions have already emerged as a result of differences in the nature and size of incentives provided to the different groups of workers both between government and NGOs, and across NGOs. This tension arises in particular in situations where there is no regulatory framework on community caregiver incentives. It results, understandably, in caregivers moving to programmes that have better incentives. The programmes that have trained the caregivers then need to find the resources to train new caregivers. On the issue of compensation, the document notes that there is a general understanding in Ethiopia that caregivers should not work on a voluntary basis for longer than two years. After this period, they should receive additional training, a certificate, or financial assistance to start a business.

In Zambia, each NGO has its own policy and practice in respect of training, recruitment and remuneration. Some provide payments to caregivers placed at health facilities. Others provide allowances for community outreach activities and/or the tools to do the work such as bicycles, CHBC kits, shoes, bags and T-shirts. Caregivers may be assisted with farming inputs and spiritual/pastoral care. Other incentives take the form of recognition at community gatherings and training certificates for training which can vary from two to eleven weeks. The report states that generally organisations in Zambia tend not to pay community caregivers. It suggests that the origin of the non-payment is the early CHBC programmes designed and run by the Salvation Army and Catholic Church which encouraged a ‘self-help’ approach. However,

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elsewhere the report notes that funding cutbacks in Zambia have resulted in ‘loss or severe reduction in cash incentives, and even in resources such as bicycles’, suggesting that monetary and other compensation was previously provided and the legacy of the Salvation Army and Catholic Church was not pervasive. The report observes that the cutbacks have resulted in many community caregivers stopping this work. Across the four countries, most of the 46 CHBC organisations who responded said that funding cuts were a serious and ongoing problem. All of the organisations in Zambia said that they had experienced funding cuts as a result of changing donor priorities. A 65-page publication produced by VSO in collaboration with Gender and Media Southern Africa (GEMSA) (GEMSA and VSO-Regional Aids Initiative of South Africa, 2010) is intended for use by country facilitators of a planned coalition to advocate for recognition in policy of caregivers’ unpaid labour in CHBC. The publication includes three sections: a section that sets the context; process guidelines that describe advocacy activities, and materials that can be used in the advocacy and lobbying process. The background summarises the key principles that emerged from an audit of national policies on care work in 12 Southern Africa and Development Community countries that GEMSA conducted in 2008–09. These principles include the following: that caregivers, who are doing government’s work, have a right to financial reward (and that more men would get involved if there was financial reward); that caregivers need to be provided with logistic and material support (suggested elements include uniforms, bicycles, foodpacks, monetary allowances, soap, free medical treatment, financial support for income-generating projects, raincoats, umbrellas, agricultural inputs, part-time employment in hospitals, funeral assistance, stationery and transport allowances); that caregivers should receive standardised and adequate training and professional recognition; that they should receive psychosocial support to avoid burnout, and deal with stigma and stress. (The highlighted aspects are among those suggested by the UK Consortium as possible elements of compensation for caregivers to be investigated by this research.) The document also includes a table giving details of the audit findings for each of the countries in respect of each of these elements as well as gender equality. Zambia is categorised as having a ‘mediocre’ policy. Of the five elements, it has policy only in respect of training and professional recognition. The description for this element is as follows:

No policy that recognises care-givers as professionals except the third line of care-givers (professionals like nurses, clinical officers etc). Care providers are trained by qualified trainers from the Ministry of Health (MoH) and other organisations. Care-givers receive a certificate of attendance after training. CHBCs are registered under the Registrar of Societies. CHBC organisations are also required to register with the [District Health Management Team] in their area of operation. Existing training and standardised training manual.

Zimbabwe, in contrast, is categorised as having a good model. This categorisation appears to be based on ‘new’ guidelines developed. The handbook does not discuss whether and how these guidelines will be enforced. There is no policy in respect of gender equality, but the four remaining elements are covered as follows:

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• There is no policy on remuneration, but government ‘recommends that the community mobilise funds for caregiver costs. The government feels that by remunerating care-givers, the spirit of volunteerism would be compromised’.

• On logistical and material support, the ‘new’ guidelines recommends incentives that mirror those that the policy handbook gives, suggesting that the handbook has based this element on the Zimbabwe guidelines.

• On training, the guidelines suggested standardised training that uses an adult learning approach and that includes coverage of accidental exposure to infection.

• The need for psychosocial support is recognised.

International non-governmental organisations This section of the report reflects information collected through interviews with INGOs who fund and support caregiving activities in Zambia and Zimbabwe, namely CAFOD, Help the Hospices, m2m, SC, Tearfund, VSO and World Vision. The interviews were supplemented in some cases by documents provided by informants, as well as by email information from others in the organisation. Multiple interviews for a single organisation and these additional emails assisted in highlighting differences in the approach and activities of a given INGO in the two countries. These differences at times reflected the relative independence of the organisation in the different countries.

Catholic  Agency  for  Overseas  Development  CAFOD, as its name implies, is a faith-based organisation. It covers a number of thematic areas in its work, namely HIV, livelihoods, governance and advocacy. Within the HIV area, CAFOD places special emphasis on the needs of orphans and other vulnerable children (OVC). CAFOD’s Southern Africa Regional Office operates in Malawi, Mozambique and Swaziland as well as our two core countries of Zambia and Zimbabwe. CAFOD supports HIV-related work in all these countries except Swaziland. All the work supported by CAFOD in southern Africa in respect of HIV is ‘kept alive’ through volunteer caregivers. Since CAFOD started funding HIV work in Uganda in 1986, it has partnered for this work primarily with churches. The church partners saw the work as an extension of the pastoral activities of the church and based on gospel principles such as ‘I was hungry, you gave me to eat’. This formed the basis for encouraging volunteer work by women and men. CAFOD selects its partners on the basis that their mission, vision and objectives are in line with CAFOD’s ‘Just One World’ vision. CAFOD supports six organisations in Zambia and two in Zimbabwe in respect of HIV-related caregiving work. All the supported organisations are faith-based. All the organisations support work with volunteers who provide care. Some of the volunteer caregivers are themselves living with HIV and belong to support groups. CAFOD has developed guidelines to complement the national guidelines on HBC in each country. The CAFOD guidelines emphasise the importance of valuing the work of the volunteers by encouraging its partners to show appreciation of the services delivered in cash or in kind (CAFOD, undated). The ten-page guideline document recommends ‘working principles’ for working with volunteers who make an ‘indispensable contribution’ to the work of CAFOD’s

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HIV-related programme partners. The guidelines stress throughout that the document is not intended to be prescriptive, but goes into more detail than almost any other similar document on the topic. It starts from the premise that volunteers are donating not only ‘leisure’ time, but also time in which they could be earning income for themselves, that they are generally as poor as those to whom they deliver services, and that they usually contribute beyond time from their own resources. The ‘key learning points’ listed and briefly discussed relate to the need for training, support and supervision so that volunteers feel confident, are competent and remain committed; adequate equipment; ‘tokens of appreciation’ that they can keep, such as T-shirts, bicycles, umbrellas, certificates, as well as celebrations such as on International Volunteers Day; clarity about incentives and consistency with what other similar projects provide; clear and transparent recruitment and selection process and clear time frame in which they must work; appropriate support for those who are living with HIV, and avoidance of a situation where volunteers assume or are given inappropriate responsibilities or status. A further learning point is that the majority of volunteers tend to be women, and that this work adds to their existing care burden. In line with the above principles, the document then presents recommendations on recruitment and selection; induction; support and ongoing training and provision of resources while working; a code of conduct for volunteers, and examples of incentives and related issues. On the last-named topic, the document notes the need for CAFOD to develop an approach consistent with that of other NGOs and which ‘sustain[s] an ethos of “volunteerism without ulterior motives”’. It offers several further working principles in this respect, namely standardisation across projects, checking on tax and insurance implications, the need for everyone to be clear from the beginning on the approach, equality of access to incentives across volunteers, and transparency in relation to management and control of incentives. The document ends with a short discussion of sustainability, which in this document is understood to relate to accepting the fact that volunteers ‘will come and go’ rather than to financial aspects of sustainability. The support offered by CAFOD in Zambia and Zimbabwe varies across partner organisations on the basis, among others, of available resources. The variation reflects the value that CAFOD attaches to partnership, and thus the ability of partners to determine what they do. Overall, it seems that there is as much variation between partners in a particular country as between partners in the two countries. Our interviewee said that, to the extent that one can generalise, CAFOD partners provide the following forms of support to volunteer caregivers:

• In-kind support includes agricultural inputs such as seed and fertiliser and supplementary

food. • Logistic and material support takes the form of bicycles, scotch carts and wheelbarrows;

wrap-around skirts (chitenje), walking shoes, umbrellas and raincoats. Also, a transport allowance may be provided where the caregiver does not have a bicycle and must travel long distances.

• In some of the St Theresa Ibenga sites in Zambia, caregivers have formed support groups to provide psychosocial support to each other, and to motivate each other through activities such as burial societies or savings and lending schemes.

• Supplementary food (such as maize meal, matembe, oil) for passing on to sick clients, where this is available, through channels such as the World Food Programme.

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• Basic initial training in caring for the sick, followed by workshops for refresher training where the need arises, such as where there is turnover of volunteers or particular needs, for example, where there is an outbreak of diarrhoea. Attendance certificates are awarded for this training. Some caregivers are also referred to training offered by other organisations.

CAFOD does not prescribe the amount of money to be given to caregivers and it seems that, in practice, few (if any) of its partners offer a stipend or salary. The organisation has learnt, through experience, the dangers involved in different programmes that use volunteers offering differing incentives which encourage volunteers to move from one programme to the other in search of the most lucrative work. CAFOD notes further that many of the volunteers say that the work they do is a way of helping others as they themselves have been helped. In addition, the organisation is keen that as much as possible of its funding should be of direct benefit to clients. Nevertheless, our CAFOD person expressed concern as to whether the ‘volunteer concept’ should continue, and questioned whether NGOs, in doing this work, had relieved government of its responsibility and ‘offloaded’ the responsibility on poor women in the community. CAFOD and its partners utilise a range of strategies to avoid burnout and encourage volunteers. Partners may, for example, organise a retreat for volunteers, celebrate International Volunteers Day, organise exchange visits, or organise livelihoods-related skills training. CAFOD tried to ensure that each volunteer should not have more than about six households to care for. In some projects volunteers receive priority attention when they themselves require medical treatment.

Help  the  Hospices  The bulk of the work of Help the Hospices (HtH) focuses on supporting independent hospices in the UK. The organisation’s programmes and projects in ‘resource-poor’ developing countries are for the most part implemented by non-UK-based organisations (‘partners’) that HtH funds in the other countries. The overall aim is to support the development of palliative care, with a focus on community-based approaches. For the most part, the work in developing countries focuses on palliative care in respect of HIV. However, it is only HtH’s planned project in Zimbabwe that will involve community-based caregivers. The choice of planned focus in Zimbabwe was driven by both the preference of the first potential donor and that of the partner organisation, Island Hospice, with which HtH has had a long relationship. The work with caregivers will constitute only one element of the planned project. HtH does not have any written guidelines in respect of caregiver support, but would aim to work on the principle of ‘not just using people’. For the Island Hospice programme, compensation would take the form of:

• A small annual incentive payment at a rate less than the government of Zimbabwe recommends. Island Hospice motivates the smaller amount on the basis of sustainability, the available budget, and provision of other, non-financial incentives.

• Logistic and materials support will take the form of HBC kits and uniforms. Bicycles will not be provided after experience in a previous programme that the bicycles were not used, and were in fact not able to be used in the rainy season.

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• Emotional (or psychosocial, to employ the term more commonly used in the literature) support will be provided through regular contact, mentoring and support groups.

• Training in saving and lending will be provided by a consultant. • Whatever certification is provided through Island Hospice, which is a recognised training

provider. HtH sees the compensation as ways to motivate carers and encourage them to participate, and believes that people should not work ‘for free’. At the same time, HtH is aware of the need for the programme to be sustainable after HtH leaves. Our interviewee suggested that a community savings element would lessen the need for caregivers to be paid for the caregiving. However, it seems that the inclusion of an ongoing livelihoods aspect in the programme contributed to the initial potential donor’s eventual decision not to support the programme as the funder felt that HtH was not a livelihoods organisation. The application to the second donor includes provision for a savings and lending consultant to provide once-off training to the caregivers.

mothers2mothers  m2m provides psychosocial support and education to pregnant women living with HIV and new mothers, with the aim of reducing the incidence of HIV infection and increasing the number of healthy mothers and babies. All of its programmes involve caregivers. The name of the organisation reflects the fact that the ‘caregivers’ are mothers living with HIV who are trained to work alongside doctors and nurses in understaffed health centres and to provide one-on-one support to other women. The programme thus operates on the basis of a form of peer support. The caregivers’ work is done in the health facilities, through home visits, and in the community more generally. The programme currently operates in Botswana, Kenya, Lesotho, Malawi, South Africa, Swaziland, Tanzania and Uganda. The organisation worked in Zambia between 2007 and 2011, but has not worked in Zimbabwe. m2m’s 2011 annual report indicates that Zambia was part of pilot implementation of m2m’s Active Client Follow-Up initiative in which the caregivers follow up on women who miss appointments through phone calls, SMS and home visits. The pilot is currently being rolled out to all m2m sites but is not being implemented in Zambia as m2m is not active there at present. m2m does not usually work through intermediaries; instead it implements through its own staff and structures. However, in Zambia m2m provided capacity building to both government and a local implementing partner, ZAPP, to build the m2m approach into their work. m2m also provided financial assistance to ZAPP, but the organisation closed after m2m funding and support stopped. Compensation for the m2m caregiver mothers incorporates the following elements:

• All workers receive payment for five eight-hour days per week, complemented by unspecified benefits. The pay is aligned with that of a comparable cadre of health care workers in that country, and therefore differs across countries. Our informant did not specify the amount paid in Zambia.

• Nutritional support takes the form of education and cooking demonstrations. • Logistic and material support takes the form of a cellphone. Our informant also classified

monitoring and evaluation, training and a demonstration tool under this category.

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• Caregivers are provided with nutritional support for delivery to the beneficiaries whom they service.

• Psychosocial support is provided. • Three weeks of pre-service training is provided, followed by one week of in-service

training each year. • Certification differs across countries. In Zambia, caregivers were given attendance

certificates. • Other named forms of compensation and support were supervision by the project

manager, a wellness programme to assist with management of the caregivers’ chronic illness, and an employee wellness service.

The main principle in determining the compensation for caregivers is that it should be in line with what is paid to others who do similar work in the country concerned. No information was provided on strategies to reduce turnover, but our interviewee emphasised that the recruitment process was ‘stringent’.

Save  the  Children  SC is a secular organisation. As the name suggests, its work centres on children. Its focus areas include health, child protection, nutrition and food security, education, and child rights governance. The organisation’s HIV-related work spans several of these focus areas, including child protection and health. The organisation operates in approximately 120 countries. Within Africa, SC supports HIV-related work in Côte d’Ivoire, Malawi, Nigeria, South Africa, Zambia and Zimbabwe, among others. PEPFAR is one of the most important donors for the HIV-related work. SC aims to support proper parenting practices by primary caregivers and this is usually done through volunteers (secondary caregivers). Primary caregivers are also reached directly through parenting sessions, group-based methods and centre-based services. The secondary caregivers get some support in the form of stipends related to training/workshop and travel allowances, but do not receive a salary. However, SC’s support to the social welfare workforce strengthening agenda may change this paradigm as it would provide for support for para-social workers linked to local government who would monitor children’s well-being over time. SC’s hope is that government would then provide the regular stipend/salary for this level of worker. For the most part, SC supports caregiving work by funding partner organisations who recruit and manage caregivers, although in some cases SC itself recruits the caregivers. In Zambia, SC provides both funds and technical support to partner organisations that work directly with caregivers. Six partner organisations, of which two are faith-based, work with caregivers. However, in some cases the carers on whom the SC-funded work focuses are primary (family) caregivers rather than secondary caregivers from the community. The nature and frequency of the support varies by project, and is specified during the design phase. The support provided for caregivers who work with partner organisations takes the following forms:

• Caregivers do not receive a stipend or salary. • Caregivers do not receive in-kind support.

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• Some receive logistic and material support in the form of bicycles, name badges, branded T-shirts and bags. Some caregivers receive transport allowances of between US$5 and US$10 where they travel long distances to reach beneficiaries or attend central meetings. Refreshment allowances are also sometimes given for meetings, but these would be given to the organisation rather than directly to the caregivers.

• Emotional support is provided through monthly and quarterly meetings. • Initial training is provided to volunteers nominated by the community at the start of the

project, and there is usually refresher training halfway through the project. Additional demand-driven training is provided if resources allow for this.

• Community health workers (including traditional birth attendants and growth monitors) receive certificates after training from the MoH, which is one of SC’s partners. SC and its partners also issue certificates for training on areas such as child rights.

SC Zambia’s strategies to avoid turnover and dropout include working through existing community structures and with recognised authorities such as traditional leaders, religious leaders, and civic and community leaders who interface with caregivers; providing incentives such as the in-kind support described above, and the monthly and quarterly meetings. In Zimbabwe, SC funds both local NGOs and Rural District Councils (RDCs), which are the local authorities, in respect of caregiving. SC currently funds five partners in Zimbabwe in respect of HIV, and two partners in respect of child protection. The HIV partners include three NGO partners alongside two local government partners. None of SC’s partners in Zimbabwe are faith-based. The support provided in respect of caregivers takes the following forms:

• Caregivers do not receive any financial support. • Caregivers may receive in-kind support such as soap. • Caregivers receive uniforms and may receive tennis shoes. • In cases of dire need, SC will provide interim support for the clients of caregivers, such

as milk for a baby or school fees for a child, while looking for a permanent service provider to meet the needs.

• Emotional support is provided through quarterly meetings in which caregivers share their experiences with each other. In some wards, the local authorities fund these meetings.

• SC aims to provide six-monthly training, but funds do not always allow for this. The training is not certificated.

• In terms of ‘other’ support, SC arranges exchange visits with other projects. For the most part these occur within Zimbabwe, usually within the same province. Finally, caregivers receive occasional assistance with livelihoods/income-generating endeavours.

SC Zimbabwe feels that community ownership of the projects, rather than their being seen as belonging to SC, helps to counter turnover and dropout. Exchange visits, provision of uniforms, and occasional provision of incentives such as soap and tennis shoes, visits and frequent consultations also assist in countering turnover and dropout.

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Tearfund  Tearfund is a FBO that aims to have the local church play a role in overcoming poverty. This orientation is reflected in Tearfund’s provision of financial and technical support to churches, and local FBOs who support churches. The fact that Tearfund works in this way increases the likelihood that those with whom they work will be willing to work on a voluntary basis, because of their faith. Tearfund works in almost 50 countries, in seven of which it does only operational work rather than funding. Internationally Tearfund does work on livelihoods, agriculture, food security and disaster risk reduction. Other focus areas include health and HIV, children, gender, vulnerable adults and advocacy. The organisation’s policy department focuses its work in the UK. Tearfund’s HIV unit was established in 2006. Tearfund does HIV-related work that is coordinated by the HIV unit in ten countries, nine of which are in sub-Saharan Africa, including Zambia and Zimbabwe. Caregiver work in relation to sexual violence is also supported in several countries. Tearfund does not have standard criteria on how to support caregiving. The FBOs and churches supported by Tearfund thus have some discretion as to what support and incentives they provide to caregivers. Tearfund does not actively encourage its partners to provide cash incentives for caregiving. Cash incentives have never been provided in Zimbabwe, but have been provided elsewhere, including in Malawi. Partners agree to adhere to Tearfund’s quality standards, which include the NGO Code of Good Practice. These talk in general terms about the need to strike a balance between payments and sustainability, provision of incentives for volunteers such as T-shirts, training and recognition; and the need to ensure caregivers are supported so as to avoid burnout. Tearfund’s Roots Guides publication series includes one on HIV (Blackman, 2005) which outlines how to care for carers. Tearfund’s partners are, however, not obliged to adhere to the guidelines. The guide suggests that caregivers should care for a maximum of ten families, should be given clear and realistic responsibilities, should be organised in teams that can provide emotional support and share the burden of caregiving, should have regular meetings, and should receive spiritual support and counselling where needed. Regular training should be provided, and the caregivers’ work should be recognised and valued, for example by involving the caregivers in decision making. The guide argues that one of the disadvantages is that community members will see the caregivers as employees, and this may place at risk community ownership of care for people with HIV. It uses the example of a partner in Zimbabwe to argue that organisations that pay caregivers struggle to expand their projects and have volunteers who lack commitment to the work. It suggests that recognition of the need to care for caregivers is better expressed through means such as payment of travel allowances, and provision of free health care or food at a reduced price. Tearfund began funding work in Zimbabwe involving caregivers in 1987 through FACT, a faith-based CHBC programme. In 2009, Tearfund Zimbabwe was established as a trust. It is also in this year that Tearfund started thinking strategically about palliative care and extended HBC. In Tanzania and Zimbabwe Tearfund is piloting an extension of existing HBC programmes to include palliative care and move beyond HIV to include other illnesses. Tearfund Zimbabwe supports two organisations in Zimbabwe in respect of direct ‘employment’ of caregivers, namely FACT and River of Life. Tearfund also funds Island Hospice – which is not faith-based – as an ‘intermediary’ partner to provide training to caregivers. FACT links

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caregivers with government hospitals and health centres. In this partnership, the health centres provide technical support, including gloves for the palliative care programme. The support recommended by Tearfund Zimbabwe to caregivers and beneficiary households takes the following forms:

• In terms of material and logistic support, bicycles are provided to caregivers in districts for which the donors supply the necessary funds, with any ‘left over’ given to caregivers in other districts. The necessary funds are budgeted for uniforms for all caregivers, but sometimes those supplied are not the correct size. Gloves should be provided, but sometimes stocks of both the implementing partner and the health services are not sufficient. Funds are provided to cover the cost of umbrellas and disinfectant, but where there are insufficient funds umbrellas must be shared.

• A Tearfund Zimbabwe partner, FACT, has recently employed a social worker to ensure that emotional support, as well as mentoring and supervision of caregivers, is strengthened.

• All caregivers receive both initial and annual refresher training. (Refresher training was less regular before the palliative care component was introduced.) Mentoring support has also been introduced but is not always adequate to reach all of the project caregivers.

• The initial training is certificated, and this is considered by the implementing partners to be an incentive as the caregivers can use the certificate to get similar work in other provinces.

No financial or in-kind support is provided for caregivers or those for whom they care. The only time cash is provided for caregivers is to cover costs of airtime for calls to FACT and transport money when caregivers attend training or need to be present for special occasions, such as visitors from the UK. Tearfund Zimbabwe recommends that groups of caregivers come up with a business plan for economic activities (such as a vegetable garden, poultry or goat-keeping), which it then supports with funding. The organisation feels that this approach is more sustainable than providing cash incentives. In line with this view, Tearfund Zimbabwe tries to ensure that caregivers have sufficient time to spend on supporting their own families. This is done through trying to avoid their having to cover long distances and/or work long hours, and limiting the number of patients per caregiver. All the caregivers on the PC project are engaged in income-generating projects. In addition, FACT encourages the church to support the caregivers, to pray for them, and to have them stand up in church so the community can acknowledge their efforts. Tearfund Zimbabwe has also tried to encourage church support groups after a similar initiative by the health centres failed. Some of the implementing partners have devised other strategies to reduce turnover, such as giving preference to married women with children rather than young people who are more likely to move to urban areas. The PC project has a monitoring and supervision component in which mentors accompany caregivers on home visits and provide feedback. Caregivers are also provided with notebooks and taught how to take notes. The main purpose of the mentoring and supervision is to safeguard the quality of the caregiving, but Tearfund also sees it as a form of support for the caregivers. Overall, our Zimbabwe interviewee felt that the additional support introduced for the palliative component had resulted in a realisation that the caregivers ‘are professionals in their own way,

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they are not just volunteers’. She felt that Tearfund Zimbabwe’s partners provided a higher level of ‘appreciation’ of the work done by the caregivers than other organisations. Our Zimbabwe interviewee noted that the overwhelming majority of caregivers were female. She was comfortable with this situation as she felt that women were ‘natural’ carers and provided better care than men. She noted further that men had greater expectations in terms of cash compensation and were less committed while ‘for women even without compensation they still continue’. In Zambia, Tearfund had a PEPFAR-funded HIV project between 2009 and 2012 that included caregiving. The availability of PEPFAR funds allowed Tearfund to scale up the ‘pockets’ of related work that they had done in Zambia before this time. The Zambia project was at a much larger scale than Tearfund’s caregiving support in most other countries, which is funded through smaller amounts available from operational funds, trusts and foundations. The Zambia work covered 17 districts in which, unlike Zimbabwe, caregivers received some cash payments. The time spent by volunteers was considered as part of the cost-sharing agreement between PEPFAR and Tearfund and partners were asked to document volunteer time to demonstrate this contribution. The payment for the work of caregivers was intended to cover costs incurred by them in doing the work, such as costs of transport, meals and provision of support to those they visited. The payments were determined by the local partners based on the extent of assessed needs and the costs incurred. In addition, caregivers received T-shirts, vitenje, bicycles, home-based care kits with basic medication, gloves, soap and other materials. The bicycles were sourced from Bicycle World, a UK-based bicycle dealer, remained the property of the implementing partners, and had to be returned to the partner when the volunteer stopped working for the project (PEPFAR/New Partner Initiative, 2010). Recognition at public events was given as a further form of motivation.

Voluntary  Service  Overseas  VSO consists of a federation of country-based organisations, all of which recruit volunteers, raise money, and engage in advocacy and policy-orientated work. The programme work is managed by VSO International. The organisation is not faith-based. VSO’s primary focus is on poverty, and the work is organised in terms of four ‘development areas’, namely participation and governance; education; secure livelihoods, and health and HIV. VSO provides support primarily through recruitment of professionals such as teachers, doctors, midwives, and agricultural specialists who work with partners in more than 30 countries. The costs related to the volunteers (including their monthly pay) are covered by funders. The bulk of the work that involves caregivers is in southern Africa, and especially in Zambia, Zimbabwe, Mozambique and Malawi. The focus of programmes in Zimbabwe and Zambia is on home-based care, while the focus in the other two countries is broader. In southern Africa the HIV work occurs under the umbrella of the Regional AIDS Initiative of Southern Africa (RAISA). RAISA has been in place for about 12 years, and VSO has supported caregiver-related work in Zambia and Zimbabwe for about ten years. While VSO’s support comes mainly in the form of professional volunteer support, within RAISA VSO also provides small grants to partners who carry out work that involves home-based caregivers. The money is used for expenses such as bicycles and home-based care kits, training and seed funding for income generation projects. VSO also organises (and funds) national exchange visits between partner organisations so that they can learn from each other, and the

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costs of centralised training on topics such as palliative care and income generation activities for caregivers. The centralised training is usually provided in Pretoria. VSO has also put a lot of effort into supporting advocacy work, including advocacy in parliaments in the southern African region over the last seven years. The organisation sees the caregiver policy that Zimbabwe adopted in 2012 as a direct outcome of its advocacy, as the policy recognises the contribution of caregivers and commits to providing them with training, materials and – in the long term – with remuneration. Our interviewee explained, however, that the Zimbabwean government would only be able to commit to remuneration when donors committed funding for this. In 2013, VSO is supporting ten caregiving organisations in Zambia and eight in Zimbabwe. Our interviewee was not aware of any guidelines provided to funded organisations in respect of support for caregivers. VSO did, however, collaborate with GEMSA in producing ‘Making care work count’ and has also worked with the World Health Organisation and South African Development Community in providing guidance and information to country programmes. VSO does not fund stipends or other allowances for caregivers. Instead, its support focuses on improving conditions for home-based caregivers, increasing male involvement in care provision, provision of social protection for home-based caregivers (ie kits, training in and seed money for income generation, and psychosocial support), and advocacy. Training on psychosocial support is provided to the CBO, which is then expected to use the skills and knowledge in supporting the caregivers. Training on caregiving is provided to both the CBOs and the caregivers. Trainees who complete the training are provided with certificates by both the partner CBOs and by VSO. ‘In principle’, VSO believes that caregivers should be compensated in some way as they are providing an essential service. Ideally, it would like to see caregivers receiving stipends, money to cover travel costs related to training, bicycles, equipment, support, supervision and protection from infection. However, VSO does not insist that CBOs include specific aspects, but instead funds in line with the small grant applications received. The support on income generation is provided to avoid burnout and also to avoid caregivers being ‘further impoverished as a result of the caregiving role they are providing’. However, our interviewee was very clear that caregivers are currently not adequately compensated for the work they do and ‘can’t just be expected to do something for nothing’, especially given the increasing sophistication of the work done by them. Our interviewee believed that there had been a shift in thinking, in that nine years ago VSO staff members were more inclined to accept the belief that caregivers should not expect remuneration because they were engaged in the work ‘out of love’. However, since then there had been increased recognition of the crucial role played by caregivers in the health system. Nevertheless, caregiver support at national, regional and global level remained ‘woeful’. Ultimately, VSO would like to see legislation in each country that:

• recognises the critical role played by home-based caregivers; • guarantees adequate training, equipment, support and supervision to enable them to carry

out their caregiving roles effectively, safely and without falling into further deprivation as a result;

• provides for remuneration in the form of state-provided welfare payments in recognition that the caregiving role they provide restricts their ability to earn an income (along the lines of caregivers’ allowances paid to full-time carers in the UK)

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World  Vision  World Vision International (WVI) is a faith-based (Christian) organisation that engages in and supports community-based relief, development and advocacy work focused on children. WVI operates in more than 100 countries across the world, including Zambia, Zimbabwe and about 25 other countries in Africa. WVIs global HIV programme, the Hope Initiative, was active in 21 countries in Africa until 2011. Since 2011, WVI has continued to provide support on HIV, but mainly in East and southern Africa. All WVI countries that have HIV as a focus include work on caregivers. World Vision (WV) has been operating in Zambia since 1981. The organisation works in all of the country’s ten provinces, and in 29 of the 72 districts. WV Zambia has been funding caregiving work in relation to HIV since 2003. In 2013, WV Zambia provided direct support to more than 11,000 caregivers through the STEPS OVC consortium. If grant funding to CBOs that provide caregiving is included, WV Zambia was working with more than 50,000 caregivers. The latter grants do not, however, necessarily explicitly target caregiving. WV organises the caregivers to whom it provides direct support into community care coalitions (CCC). These coalitions, each of which covers a designated area, are made up of representatives of institutions and organisations that provide support for OVC (including schools and health facilities) and households that are affected by HIV. Caregivers receive training from WV Zambia in home-based care, counselling and testing, adherence to treatment, follow-up of children, simple monitoring and reporting, simple report writing and organisational development. The latter relates to WV’s hope that caregivers will come together to register as independent CBOs. The CBOs are also linked up with the relevant District AIDS Task Force (DATF). The task force is responsible, among others, for assessing which organisations should receive funds. Caregivers are also trained in community village savings and lending models for individual and group economic empowerment. The intention is that they use the money they receive through the savings schemes to support both their own needs and the costs of providing caregiving, including the basic needs of those for whom they provide care. WV Zambia has a broad definition of care that ranges from taking a child to a health centre and encouraging and facilitating school attendance to provision of counselling, prayers and/or food. Caregivers also assist with monitoring of adherence to medication regimes. For caregivers whom WV directly funds, support takes the following forms. It sees these forms as being in line with the Zambian government’s draft guidelines on compensation:

• Material and logistic support includes a bicycle in respect of which caregivers sign a memorandum of understanding that says that they will use the bicycle for two years for their caregiving activities, after which it will become theirs. WV has not been able to offer bicycles to all 11,000 caregivers, but in some areas there are other bodies, including government and the CHAZ, that adopt a similar approach. Other such support takes the form of home-based care kits with medication, umbrellas, raincoats, gumboots and torches for night work.

• Where necessary, in-kind support for those cared for is provided in the form of linkage to WV Zambia’s food security programme and/or linkage to a sponsor who can provide school-related materials. Households in which patients reside are also linked to livelihood activities if they are able to engage in these.

• Emotional support is provided in the form of peer support from other group members, including through monthly meetings.

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• Trainees receive certificates of attendance (rather than of qualification). • In terms of support for income-generating activities, WV Zambia identifies ‘lead farmers’

who can train others, and who receive seed to support themselves and their ‘clients’. The community savings groups constitute a further element of livelihoods support, as well as a grinding mill for caregiver groups that have financial records that show how they use their money to support the vulnerable.

WV Zambia does not provide stipends or salaries for caregivers. The organisation does not provide any guidelines to the CBOs that receive grant funds on how they should support any caregivers that are part of their organisation. It would see provision of such guidelines as undue interference. The Hope Initiative was implemented in Zimbabwe as from 2001, although even before this date WV Zimbabwe had some HIV-related activities. WV Zimbabwe sees itself as facilitating the work of others. In particular, it assists the MoH through training of home-based caregivers, and provides uniforms, bicycles and caregivers’ kits to the caregivers. WV Zimbabwe itself provides the training and other support to CBOs and/or to caregivers rather than working through intermediary organisations. While providing this support, WV Zimbabwe is clear that it is government that ‘owns’ the relevant structures and it is to the local government that the caregivers must report. Zimbabwe has 58 districts, and WV Zimbabwe works in 24 of these. Each district has between 15 and 20 wards, and WV Zimbabwe provides training and support in three to ten wards per district. While WV does not fund NGOs or CBOs in respect of caregiving, it sub-grants money to some CBOs and also supplies some of the CBOs with materials for caregiving. The support provided by WV Zimbabwe to caregivers and beneficiary households takes the following forms:

• WV Zimbabwe does not provide allowances to caregivers. CBOs may, if they so choose, use part of the money they receive as a sub-grant to pay allowances to caregivers.

• Logistic and material support takes the form of equipment, and is in line with what was agreed by the NAC, namely a bicycle for each caregiver, a uniform (including a headdress for female caregivers), tennis shoes, a bag containing a care kit, and promotional materials. The contents of the care kit are determined by the government rural health centres on the basis of the needs of patients. Contents could include Betadine, gloves, eye ointment, soap, Vaseline, towels, other ointments.

• No emotional support is provided to caregivers. • Training is provided, and is required by the MoH. After training, caregivers are registered

with the local health facility, but do not necessarily receive a certificate. Our interviewee said that the status of ‘volunteer’ accorded to caregivers was ‘a stance inherited from government policy’ and was clearly explained during training. He had conducted focus groups and interviews with caregivers in preparation for the interview and reported that the caregivers said that even if they were volunteers, they should receive some compensation as they needed to be able to assist their own children. As our informant expressed it: ‘As humanity we all have expectations of compensation. We need some form of livelihood to survive.’ Across the groups, the amounts suggested were between US$10 and US$50 per month. He said that the caregivers compared themselves with village health workers who received US$42 every four

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months (effectively US$10 per month) from government. (The village health workers are also regarded as ‘volunteers’ rather than employees or government employees, are not covered by labour laws and not entitled to membership of the government pension fund.) WV Zimbabwe supports livelihoods projects, such as gardening or poultry, in some of its programmes, but this support is not found in every caregiver programme but instead depends on the initiative of the WV officer working in the area. One respect in which WV Zimbabwe performs better than some other funders is that it is able to provide funding for a bicycle, uniform and care kit for each and every caregiver rather than only for some of them in each project. 0 and 0 summarise the compensation and support for caregivers reported by the various INGOs. The table reveals that one of the INGOs – HtH – (aims to) provide for financial compensation, but even this is below the level recommended by government; another INGO, m2m, did provide financial compensation during the duration of the project, but this INGO is no longer active in either Zambia or Zimbabwe. Two of the INGOs provide for some type of in-kind support, in one case food and in the other a personal necessity item. In contrast to the few mentions of financial and in-kind compensation, logistic and material support is provided for by all INGOs, and generally takes the form of transport equipment, uniforms and care kits or some of their contents. For this item, m2m is an exception in providing access to cellphones. There were also references to transport allowances, but this seemed to be available only in particular cases, or for particular purposes such as training. For the most part, these items cannot rightly be considered as compensation, as they are tools required to perform the work effectively. If anything, they represent a form of reimbursement. At least four of the eight INGOs provide for some sort of support (other than care) for patients and their families. In most cases this is provided only for the most needy. All but one of the INGOs report that they provide some sort of emotional support for caregivers. This most often takes the form of regular meetings, but CAFOD sees some of its social protection-type support – such as burial society, savings and lending schemes, and income-generation activities – as forming part of emotional support. All INGOs state that caregivers receive some sort of training or capacity building. Several refer to both initial and follow-up training. In most cases at least some of the training is certificated. However, it is not clear to what extent the certificates will enable the person to seek employment outside of that particular project or home-based caregiving more generally. Finally, INGOs reported various other forms of support, and this included support for income generation.

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Table 1: Summary of compensation and support provided by caregivers by INGO: Part 1 INGO Financial In-kind Logistic and

material To cared-for via caregiver

CAFOD No Food supplements or agricultural inputs for some.

Bicycles, scotch carts or wheelbarrows to some; wrap-around skirts; shoes, umbrellas/raincoats; transport allowances if no bicycle, distance long.

Food for neediest: energy supplements, corn/soya blend, maize meal, matemba and cooking oil.

Help the Hospices Incentive payment, below US$14 recommended by government.

No Home-based care kits and uniforms.

No

mothers2mothers Yes, in line with what is paid to others doing similar work in relevant country.

No Cellphone and working tools.

No

Save the Children Zambia

No No Bicycles, name badges, branded T-shirts and bags to some; transport and refreshment allowance (US$5–10) to some.

No

Save the Children Zimbabwe

No Soap Uniforms, tennis shoes.

Short-term relief if dire need.

Tearfund Zimbabwe No No Uniforms and umbrellas to all; bicycles, gloves, JIK to some.

No

VSO No No Varies, eg bicycles, care kits.

No

World Vision Zambia

No No Bicycles for some. School kits for needy children; link to livelihoods activities for those living with HIV.

World Vision Zimbabwe

No No Bicycles for all; headdress, dress, tennis shoes and bag; promotional materials.

Items from home-based care kit eg Betadine, gloves, eye ointment, soap, Vaseline, towels.

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Table 2: Summary of compensation and support provided by caregivers by INGO: Part 2 INGO Emotional Training Certification Other CAFOD Caregivers formed own

support group; burial societies, savings and lending schemes, income-generation activities; prayer sessions.

All trained upon enrolment; at times refresher training; referral training of other organisations.

Yes, some. Exchange visits for learning and motivation purposes.

Help the Hospices Regular mentoring/contact and support groups.

Saving and lending consultant to train.

Island Hospice training.

No

mothers2mothers Psychosocial support. Three-week pre-service training; one-week in-service training per year.

Yes, all. Wellness programme.

Save the Children Zambia

Monthly and quarterly meetings with some caregivers.

Initial; refresher halfway into project; demand-driven if resources available.

Yes, some. Referral to other available support services.

Save the Children Zimbabwe

Quarterly sharing meetings; psychosocial support to some.

Capacity building for all.

No Exchange visits within Zimbabwe.

Tearfund Zimbabwe Groups organised into clusters to provide peer support.

Annual training followed by mentoring and supervision.

Yes, for initial training.

Income-generating activity and start-up grants.

VSO Training for managers in psychosocial support.

Yes Yes Volunteers support capacity building. Support for income generating activities: training; study tours.

World Vision Zambia

Monthly support meeting.

Yes Yes Lead farmers support others; link to savings groups; grinding mill for group if conditions met.

World Vision Zimbabwe

No Yes For some.

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Zambia case study Relevant  country  policy  The introduction to Zambia’s National Minimum Standards for Community and Home Based Care Organisations (National AIDS Council Technical Working Group, 2007) notes, as a success, ‘the involvement of communities and families in voluntarily dedicating themselves to the movement’. The document notes that expansion of treatment, care and support is one of the six themes of the Zambia AIDS Strategic Framework. The first strategic objective within the theme is to ‘strengthen community and home-based care’. Among the issues it then highlights in relation to the objectives are:

• actively support communities and groups engaged in home-based care • provide psychosocial support and appropriate skills to caregivers • devise strategies to address burnout syndrome and infection risks among home and

community service providers The document states that it sets out the ‘principles and steps for which home-based care organisations must strive in order to improve on the quality of care and support offered to the client’. The guidelines could thus be interpreted as aspirational rather than as firm requirements. However, the document also notes that the word ‘minimum’ means that the standards are meant to be realistic and achievable. It goes on to state that the standards will be used to ‘regulate’ community and HBC so as to protect ‘clients’, that the standards will be ‘enforced’, and that they will be used to ‘register and certify’ care organisations. The standards are grouped into five categories, which together have 23 standards. The presentation of each standard includes a list of indicators, key actions and core skills. Category 4 is human resources, and has three standards, namely recruiting staff and caregivers; retaining staff and caregivers, and capacity building. The standard on retaining staff includes the following (pages 40–41):

HBC organisations provide an enabling environment for staff and caregivers. Indicators (to be read in conjunction with key actions and core skills) 1. HBC organisations have written conditions of service with job descriptions for staff and caregivers. 2. Staff and caregivers sign a code of conduct upon being recruited. 3. HBC organisations offer regular refresher training to staff and caregivers to inspire greater confidence and empowerment. 4. HBC organisations review staff and caregiver performance and conditions regularly. 5. HBC organisations provide essential supplies and equipment to staff and caregivers for their work. 6. HBC organisations and communities provide rewards to recognise the efforts of staff and caregivers.

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Key Actions and Core Skills … • For their own security, caregivers should be provided with a form of identification, e.g., cards, t-shirts, so that communities recognize them as part of the HBC organisation. • Where possible, caregivers should be provided with transportation to facilitate their work, especially where clients are based remotely. • HBC organisations should hold special events for caregivers to reward their efforts and make them feel part of the organisation, e.g. sports and recreation, labour days, volunteer of the month. • Other rewards for caregivers may include bicycles, blankets, food, farming inputs, medical and funeral support. • HBC organisations and communities should collaborate in making decisions on and providing rewards to caregivers. • HBC organisations working within the same area should coordinate to harmonize reward schemes for caregivers.

Other  contextual  information  Further background information on care and support in Zambia was provided by the principal planner in the Planning and Budgeting Unit that falls within the Directorate of Policy and Planning in Zambia’s MoH, and the health and nutrition adviser for DFID Zambia. Our government informant explained that community caregivers complement the work of the government, especially where human resources are low. For our DFID informant, the fact that Zambia has high HIV prevalence makes the work of community caregivers vital. Various categories of community caregivers in Zambia were described by our informants. The first was community health workers. According to our government informant, community health workers function at the community level; they work for the community and they come from the community. They identify the homes where sick people are and refer them to health facilities. Sometimes they are trained with specific skills and knowledge. However, not all are necessarily qualified or trained, and those who are trained do not receive uniform training. This range in training among community health workers was confirmed by our DFID informant who said that community health workers were trained for six or three months. In contrast to the government informant, she said that some were lay people; some worked for the MoH, while others worked for the Ministry of Community Development. This suggests differing definitions of community caregivers among key stakeholders. Our government informant noted that because community health workers are volunteers, they do not receive payment, but may receive items such as boots, T-shirts or bicycles. What is received depends on what is in the district level budget and also on the level of activity of the workers. What is received also depends on which programme they are working on. The role of the DATF is to identify and support people with HIV. This is similar to the role of community health workers, but the difference is that these workers are part of the government structure, while community health workers are voluntary workers. In addition, there are far fewer DATF workers than community health workers. Community health workers who are part of a ‘results-based’ pilot project that is being rolled out in Zambia with support from the World Bank through the MoH receive both monetary and other

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incentives. The pilot focuses on maternal and child health, and malaria. Community health workers receive a monetary incentive to encourage or help mothers to deliver in health facilities, as well as an incentive for assisting those with possible malaria to visit a health facility. Our government informant described the results-based pilot as an example of good practice in Zambia in respect of compensation and support for community caregivers. However, he believed the number of community caregivers has decreased over the last three years, and he expected a further decrease over the next three years. He ascribed this to the removal of user fees which were used previously to fund the caregiving activities of community health workers and neighbourhood health committees. User fees were removed in 2006 and 2007 in rural areas, and in 2011 in urban areas. A further category of community caregivers are community health assistants (CHA). Our government informant described a programme still in its pilot stage where people are trained for six months and then sent back to the communities from which they come to use this training. Again in contradiction of the stated general pattern where community caregivers are unpaid volunteers, the CHAs receive a monthly payment from the government as ‘motivation’. At the time of the interview, 307 of these CHAs had been trained and were working back in their communities. Our informant described how in Zambia many international NGOs come and train volunteers, but when they leave, the workers are handed over to the government, or just left. The hope is that the CHA programme will be sustainable. According to our DFID informant, CHAs provide a link between primary care and secondary services. These workers have a clinical role as they work with those who are on ART, encourage people to visit health facilities, provide HIV counselling and testing services and refer patients who are living with HIV for treatment access. Our DFID informant stated that CHAs are trained for one year (rather than the six months stated by the government official) and are paid by the government health system. She said that the programme is currently being rolled out nationally. Previously, DFID funded the salaries of approximately 300 CHAs (perhaps the same 307 referred to by the government official) through the government budget via the Clinton Health Access Initiative. Now DFID is funding the training of these workers and the development of the training curriculum, but not subsequent salaries. The change in focus reflects DFID’s intention that the Zambian government should fund the salaries of CHAs, in order that it be made ‘sustainable’. DFID hope to train 3,000 CHAs in the next three to four years. A DFID document sets out the business case for the Human Resources for Health Programme in Zambia (DFID, 2012). This is a five-year programme in which government’s financial contribution is expected to increase from 10 per cent in the first year to 100 per cent by the end of the programme. The document describes plans to recruit 3,100 (remunerated) CHAs (estimated as equivalent to 60 per cent of national requirements), and to develop a strategy for standardisation of training, incentives and skills for an estimated 23,500 ‘community health volunteers’. The document thus seems to assume continuing reliance on volunteers, despite citing evidence that reliance on unremunerated volunteers is unsustainable. The business case document notes that there are at least ten different types of volunteers making up the total of 23,500, with differences in training, functions and incentives among others. The document cites a Community Health Worker Strategy of 2010 which suggests that there were more than 8,000 volunteers working on HIV prevention, counselling and home-based care. However, the business case appears to focus primarily on caregiving and human resources for maternal and child health, suggesting some overlap with the World Bank-supported pilot.

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In line with the business case document, additional categories of community caregivers were mentioned by our government informant. Traditional birth attendants help with the delivery of babies, but the government is in the process of phasing them out. Neighbourhood health committees are also being phased out. These committees deal with a wide range of health issues such as malaria (distributing malaria nets) and diarrhoea (ensuring that water is chlorinated). As already noted, these committees were dependent on user fees which have been abolished at the primary health care level. Community development officers (called social welfare officers by our DFID informant) fall under the Ministry of Community Development and regulations govern what they do. Their job is to identify poor or elderly people and target them for the receipt of social cash transfers and other programmes. According to our DFID informant, they have a role in terms of care and support in that they link patients to other primary health care and social welfare support services (that is, they provide information and facilitate referrals). Our DFID informant mentioned community-based distributors who counsel people on family planning methods. In the past, many of these community-based distributors were HIV counsellors. However, the work they do is dependent on available funding. Most of these workers are linked to the government in some way. The budget at the district health level has four components, one of which is community outreach. At least 10 per cent of this component is meant to be allocated towards community work. Funding and support by government to community caregivers is provided for through the government channels at the community level, that is, the health facility (centre or clinic) closest to a particular community. At the health centres the environmental health officers reportedly supervise the community health workers. Our government informant indicated that the MoH does not give money to any organisation that employs or trains caregivers, but that it works directly with international organisations and ensures that training is provided to caregivers. With regard to bad practice in Zambia in respect of compensation and support for community caregivers, our government informant described lack of uniformity in how caregivers are compensated or supported by organisations. This contradicts the minimum standards document that advises that HBC organisations and communities should collaborate in making decisions on and providing rewards to caregivers and that HBC organisations working within the same area should coordinate to harmonise reward schemes for caregivers. Our DFID informant was eager to tell us that DFID’s nutrition funding is growing. A pilot study implemented by Care UK aimed to find out if cash transfers or food packages were more helpful when people were starting anti-retroviral treatment. The research found that cash helped the patients adhere to the treatment. Therefore, according to our DFID informant, within nutrition programmes there may be scope to do more with regard to care and support, and indeed nutrition counselling is a form of care and support. DFID funds community caregivers indirectly through partnerships with NGOs such as CAFOD, Tearfund and VSO. The INGOs apply for the money (called civil society grants), and it goes through the central budget which is administered in London. Our DFID informant said that the agency did not detail what compensation should be provided by caregivers indirectly funded by them, and also did not monitor this aspect. She said that DFID had funded VSO to undertake research to help inform the Zambian government on the number of different types of community caregivers, their compensation and funding, but did not provide the research report.

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Our DFID informant argued that if you push for all caregivers to be remunerated you run the risk of destroying voluntarism. Further, treatment was more of a priority than care and support, since if treatment is stopped, people die. She described how there is already less funding for HIV work than previously, and it appears that it will decrease further.

Voices  from  funded  projects  in  Zambia  The two community-based projects selected as case studies in Zambia were Mwazwini Home Based Care (supported by VSO) and St Peters Home Based Care (supported by CAFOD). Information was gathered through an interview with the Catholic Diocese of Lusaka HBC coordinator, two interviews with senior project managers, two focus group discussions (FGDs) with current caregivers, and seven short interviews with past caregivers. Unfortunately, the country-based Zambia researcher, Joseph Simbaya, did not complete his contract. This report was therefore written up from available (incomplete) interview and focus group transcripts and a very preliminary draft report. Each of the case studies is introduced with a short description of the approach of the supporting INGO. These introductions are drawn from the in-depth interviews done as another component of this study. Mwazwini Home Based Care Mwazwini Home Based Care in Chazanga compound began operating in 1992 and established an office in 1996. The branch operating in Garden compound started around 1997–98. At the time of the interviews, Mwazwini Home Based Care reported having funding from the Global Fund (through CHAZ) and Norwegian Church Aid, ‘reservoir’ funding from CAFOD, and non-funding support linked with research into psychosocial issues. The director did not refer to support from VSO. The director emphasised community ownership and the autonomy and uniqueness of the projects, rather than ownership by Mwazwini. He said that grassroots community members would come together to start a community-based project, such as establishing a garden. After some years of operation, Mwazwini would register the project with the diocese and provide support in the form of supervision, monitoring and funding. At all times, however, the parish would discourage dependency so as to ensure that the project would continue even if the parish had no funds. At the time of the interview, Mwazwini Home Based Care had 24 caregivers of whom seven were men. However, three of the men were no longer active. In the discussion and interviews there were several references to the challenges posed by a shortage of male caregivers in terms of providing care and counselling to male patients. The motivation for becoming involved in caregiving differed across caregivers. Some joined because they were encouraged by friends to serve suffering community members. Some joined because they wanted to learn how to take care of the sick and what it entails to be a caregiver. Others joined after losing a loved one, whereas yet others joined because they hoped for help for themselves and their family once they had joined as caregivers. As one of the past caregivers, a widow with a psychologically disturbed adult son, explained: ‘That is the main reason I joined… to get help for both my son and I in our livelihood.’ Mwazwini has challenges in retaining caregivers. One of the caregivers said that previously there had been as many as 45 caregivers but many had left because ‘akabomba akabiye kamunda’ (you

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can’t work when there is nothing eaten in the stomach). As seen below, the need for food emerged repeatedly in the interviews and group discussion. Several of the past caregivers said that they had stopped caregiving on account of the lack of incentives. A current caregiver observed that widows with many children who were doing caregiving saw that others were making a success of small businesses and therefore left caregiving. Some of the Mwazwini caregivers were engaged in income-earning activities before joining as a caregiver. Some continued with these activities after joining as caregivers, while others stopped because they could not combine both types of work successfully. In contrast, others used money from the ‘chilimba’ (rotating savings and credit organisation) that was established to expand or change the type of income-earning that they did. Most past caregivers returned to their previous or other income-earning activities after they stopped caregiving. The current caregivers reported that those they cared for were bedridden and/or were living with HIV, and had related illnesses. They said they caregivers had an average of five patients. Among these, typically two would be bedridden. The work undertaken by caregivers differs from one patient to another. Tasks described by caregivers included preparing food for patients; teaching them and their primary caregivers about prevention and how to take care of the sick; counselling the sick to encourage them to continue with medication; taking medication to patients; accompanying patients to the local clinic or hospital, and caring for children. The director also referred to HIV testing, nutrition support, education support for orphans, recreation activities for children, and assistance with livelihoods. In addition, he said that the caregivers provided pastoral care. The caregivers reported that their role had changed over time. While previously most patients were bedridden, they were now (thanks to the availability of ART) able to walk and do some chores for themselves. This has reduced the workload for caregivers and also the number of times they needed to visit patients each week. However, a caregiver noted that there could also be negative effects of ART and the resultant health of patients. She said that because they now looked ‘good’, some women had become involved (again) in the sale of sexual services as a way of getting money to relieve their poverty. The director said that there was a national training package for HBC, but that caregivers needed regular refresher training so as to be able to keep up to date with developments. Caregivers similarly said that they would like further training. In particular, two referred to the need for guidance in how to persuade patients who did not want to go for HIV testing or take ART because ‘they would be laughed at’. Another said that without refresher training, ‘some of the clients might be more learned than the caregivers and if it happens that way, the client will lose hope in listening to you’. There were references to an annual training retreat where caregivers receive ‘a bit of money’, probably similar to the workshop or sitting allowances that are generally paid in Zambia. The director said that the reduction in caregiver workload as a result of availability of ART had resulted in less emphasis than previously on caregiver incentives, and that the donor community was instead ‘focused on the livelihood for the beneficiaries and forgetting about the caregivers’. The director and caregivers reported that previously they were given cooking oil, maize meal, kapenta (fish), beans and blankets as an incentive for being caregivers. They would also share any food remaining after they had distributed to patients. One caregiver said that they were given ‘clothes and a few necessities to help us fulfil the work of the caregiver’.

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The diocese had also provided maize meal and medication if they were ill and money to engage in group income-generating activities. Caregivers in Mwazwini had reared chickens both so as to be able to supply patients and for earning money to buy beans, sugar, salt and cooking oil for themselves. These forms of support had, however, stopped because Mwazwini now received less funding than formerly. A past caregiver said that Mwazwini previously had brought in someone to train the caregivers in tailoring, but that this initiative had not lasted long because Mwazwini ran out of money to pay the trainer. She had therefore moved to another project, SOS, so as to continue being trained in tailoring. The income-generation and chilimba were said to have resulted in some successes. Caregivers in rural areas were said to have used money from the schemes to buy fertiliser during the rainy season, some had used the money for building structures, while others had used it for Christmas expenses. The director argued that successful group-based income-generating activities and rotating credit would in time allow for people to get individual loans and be linked with micro-credit schemes. However, a past caregiver said that she did not gain much personally from the income-generating activity because ‘most of the profit’ was handed over to Mwazwini Home Based Care. Caregivers were unhappy that the direct support, especially in the form of food, was no longer provided. As one said when asked which forms of support were most important: ‘Food is more important because without eating you can’t do the work.’ The director explained that the project had previously received assistance in respect of food from both the World Food Programme and ‘Euro’. The former no longer worked in Zambia while the latter’s assistance stopped when their project came to an end. The reduction in available funds had affected the organisation in other ways, including its ability to provide food supplements to patients. This, in turn, resulted in some patients stopping their medication as the medication needed to be accompanied by adequate food. It was argued that the saving on food expenses ultimately imposed higher costs, as patients developed resistance to the first-line drugs, and had to be put on more expensive second-line treatment. The fact that caregivers were not able to bring food regularly to their homes also made some patients resist and reject the caregiving services. When asked what they liked about caregiving, caregivers said that they were pleased about what they had learnt (both about caregiving and – in at least one case – about income-earning), were proud that they were able to prolong people’s lives (including their own), and felt personally affirmed. When asked which aspects of caregiving they did not like, caregivers offered wide-ranging answers. One complained about ‘senior officers’ from the project implying that the caregivers did the work only to obtain food and other benefits. Of particular interest for our purposes were the complaints about setting off to do the work on an empty stomach and coming back home to a house without food. The coordinator argued persuasively that the work caregivers were doing was ‘on behalf of the Ministry of Health’ in that they were ‘filling the gap’. Government should therefore develop a uniform policy that was applicable to all caregivers. He said that the policy should provide for ‘the type of motivation one would receive in World Vision’. He said that government officials should visit on a regular basis so as to monitor and provide supervision. They should also organise forums at which stakeholders could be brought together after such visits to discuss challenges and how to address them. More generally, the coordinator said that the donor focus only on beneficiary (ie patient) livelihoods was ‘wrong’ because caregivers were ‘important’ people in the community who

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needed basic necessities and tools in order to do their work better. He acknowledged that the lack of incentives was the most important challenge in respect of caregiving. St Peters Home Based Care The Archdiocese of Lusaka HBC is one of the six partners supported by CAFOD in Zambia. St Peters falls under the archdiocese and is, clearly, a faith-based organisation. CAFOD has been the main funder of St Peters Home Based Care since at least 2000, the year in which the coordinator was appointed as the nurse for the project. Other funders include CHAZ and the FNB Sisters. The organisation has about 41 registered caregivers, but fewer than this are active. Caregivers were recruited through an announcement in the church which people responded to by raising their hand. There were no set selection criteria aside from a willingness to serve the sick. The coordinator said that as a qualified nurse, he was paid the same as a nurse on the government payroll because he was paid by the archdiocese. However, ‘What has made me work for all these years, it’s just passion for the sick and my spiritual stance.’ The caregivers said that some of their former colleagues had done the work ‘because of employment’ rather than ‘out of pity’. These caregivers had done the work at an earlier point ‘because a truck used to come loaded with things for caregivers’. One of the current caregivers said that she had been the first to stop caregiving. She had stopped for three to four months because she found a job that helped her provide for her children. One caregiver said that she had thought of ‘going to the Orthodox where they were recruiting caregivers’ because St Peters was not providing compensation. The coordinator agreed that some monetary compensation, even if small, was needed to attract back those caregivers who had left the project. The coordinator reported that the caregivers dealt with all types of ‘ailments’ related to chronic conditions. The conditions mentioned included TB and cancer as much as, if not more than, HIV. The tasks mentioned in the interviews included counselling, encouraging patients to take their medication, housework, ‘hygiene services’ (bathing), provision of painkillers, collecting medication from the clinic and delivering to patients who are not mobile, nutrition (including distribution of food), teaching primary caregivers how to care for patients and personal hygiene, and prevention and health education. As in Mwazwini, in St Peters both the coordinator and caregivers remarked on how the role of caregivers had changed with the availability of ART. This change had been seen in respect of both TB and HIV patients given that TB is often linked to HIV. Some of the caregivers’ tasks are carried out at the clinic, while others are done after the patients are sent home. There is a book for each caregiver in which the sister notes down which members of their community need assistance or monitoring and assign related tasks to the caregivers. The caregivers were reported to work from 8am to 2pm five days a week. The coordinator said that all caregivers received basic training on how to care for patients, coping skills and counselling. He said that caregivers should receive regular refresher training, but that this had not happened for some time due to lack of funds. The coordinator noted that caregivers expected to receive 10,000 kwacha during training, probably again referring to per diem or sitting allowance-type payments. To compensate for lack of funds, some training was provided during strategic meetings. The coordinator and some caregivers reported that in the past caregivers were given gumboots, umbrellas, blankets, vitenge and foodstuff such as cooking oil, mealie meal, sugar, kapenta and

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beans as incentives for being caregivers. However, the incentives had decreased or stopped due to the declining donor support. Caregivers reported that provision of vitenge, umbrellas and gumboots had stopped as far back as 2006. The coordinator reported that the decision to provide food to caregivers was made after they discovered that some of the food allocated to caregivers for delivery to patients was not reaching the people it was intended for. The chitenge materials were provided in response to a request from caregivers for uniforms. The blanket was provided because it ‘proved to be cheaper and affordable’ when compared with money compensation. Many caregivers engaged in income-generating activity alongside their caregiving work. They reported that the project had, with money from Ireland, assisted with income-generating activities through buying sewing machines and a piece of land on which they could grow vegetables. It seems that this assistance was intended to make the project better able to sustain itself, rather than necessarily to benefit individual caregivers. The initiative had, however, failed due to lack of cooperation by caregivers because they were too busy with their businesses in the attempt to provide for their own families. The caregivers had been divided into two groups in respect of income-generation and there were references to the fact that one group – those rearing and selling chickens – had benefited more than the other. One of the past caregivers felt that the absence of compensation reflected lack of acknowledgment of the work done, and that the caregiver ‘is also just a person’. The caregivers felt that they should be given money or other assistance to enable them take care of their families, including sponsorship of their children for secondary school in the same way that orphans were sponsored. The funding shortage, as well as the World Food Programme’s withdrawal, had also affected the services that the caregivers and the organisation more generally were able to offer. Focus group participants reported that clients were leaving the programme to join other programmes which offered more, and in particular, food. Caregivers reported that in the past they had been provided with toolkits that included soap, a hand towel, water, painkillers and oral rehydration solution, but now they were given only Panadol. There had also previously been money which allowed them to provide blankets, soap, maize meal, medication and even shelter to patients. When asked what they liked about caregiving, caregivers said they liked visiting patients and ‘encouraging’ them as they would do for their own family members when they were ill. One caregiver said simply: ‘We like our work as caregivers but the only problem is that it’s voluntary [ie unpaid].’ When asked which aspects of caregiving they did not like, the caregivers spoke about patients who stopped taking ART once they started feeling and looking better; patients who avoided their visits and pretended they were not at home, and the risks associated with visiting patients with TB who were not yet on treatment and in whose houses there were ‘so many things like insects’. In such a situation, they would ‘just commit ourselves in[to] the hands of God’. Caregivers used the opportunity of this question to reiterate that they did not like working without any monetary compensation, and the struggle to balance the needs of their families and patients. A past caregiver remarked that government should acknowledge that ‘caregiving is more like a doctor, a nurse as well as a midwife, because it involves carrying out the roles of the above-mentioned, for example bathing patients, washing sores and [much] more which demands ample time from a caregiver’. This, she said, meant that government should ‘show some kind of

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appreciation’ by providing allowances. When asked for suggestions going forward, caregivers said that they had no suggestions to make other than that the ‘money issue’ be addressed.

General discussion There were many similarities across the two case study projects, including the absence of educational requirements for recruitment, minimal training after the initial basic training, deterioration in the compensation provided to caregivers, attempts to provide support for income-generation activities, and a changing profile and needs of patients cared for. The tasks carried out by caregivers for the two projects were very similar. The absence of follow-up training is particularly worrying, given the widespread acknowledgment of the changing nature of the care needed and thus, presumably, the skills and knowledge needed by caregivers. One perhaps surprising aspect is that while both INGOs had said that they focused on OVC, this aspect was not mentioned much in the focus groups and interviews. There was also no mention of caregivers receiving psychosocial support, although this was emphasised in the interviews with INGOs. Both organisations had caregivers who had stopped caregiving, and for both the issue of lack of, or diminished, compensation emerged as a key reason for caregivers stopping the work. However, while the St Peters, the more overtly faith-based project, caregivers were clear that compensation should take a monetary form, in Mwazwini caregivers emphasised the need for compensation in the form of food. Both organisations had provided assistance with income-generating activities. It is unclear to what extent these were intended to support the project and to what extent to support the caregivers. The reports on the success or otherwise of the income-generating activities were mixed. The fact that many caregivers left caregiving to engage in their own income-generating activities suggest that the project-based ones were not enormously successful.

Zimbabwe case study Relevant  country  policy  Zimbabwe’s National Community and Home Based Care Caregiver Policy (NAC, 2011) covers caregivers employed by/working for government institutions as well as those employed by/working for organisations. The foreword to this policy document by the Ministry of Health and Child Welfare (MoHCW) reads as follows (page 2):

Research shows that our community and home based care providers provide these services with very little support material or otherwise. While some progress has been made to recognise community and home based caregivers in the form of different policies as well as programmes, caregivers still remain on the fringes of benefiting from their work. These caregivers more often than not provide their services on a voluntary basis and as such this contribution undoubtedly comes at a significant personal cost to the care provider… We are confident that the policy framework will ensure that our community and home based caregivers remain a part of the health care delivery system but not without the due recognition and support.

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The document notes that many caregivers are reported to drop out of caregiving in order to earn money for their own families. It acknowledges the proposition that many of those who become caregivers in resource-poor countries do so in the expectation that they will gain financially and materially, different to what might be the case in industrialised countries. The document states that about 10 per cent of organisations with community and home-based caregiver projects make cash payments to caregivers, while 75 per cent provide material incentives in the form of food, uniforms, T-shirts and/or soap. The document notes the existence of a single curriculum for caregiver training, but observes that not all caregivers receive adequate training. Resources such as care kits are not always available, placing both caregivers and patients at risk. It observes that ‘although they are not expected to be remunerated’ (page 8), they may use their own limited resources to assist those for whom they provide care. A national review of home and community-based care and treatment recommended that caregivers be provided with a range of incentives. The document notes the need for standardisation of incentives ‘to establish cohesion’ (page 9) among the various initiatives in the country. The document lists roles, responsibilities and attributes of caregivers (including that they should not ask for cash from those to whom they provide care), roles and responsibilities of the implementing organisations and institutions, and rights of ‘community secondary’ caregivers. The rights include, among others, training and development, psychosocial support ‘to relieve burnout’ (page 11), and access to bereavement counselling where necessary. The policy covers recruitment and selection, training and capacity building (minimum ten days initially, plus a minimum of annual refresher courses), administration and management, community caregiver recognition and retention, technical support and supervision of caregivers, male involvement, public-private partnerships, children, ethical considerations, and policy implementation, monitoring and evaluation. The administration and management section includes the requirement that caregivers work for at least four hours per day and three hours per week. It then goes on to note that caregivers need time for their personal tasks, but does not stipulate maximum working hours. However, it says that where emergencies require time over and above the time stipulated in their contract or agreement, this extra time should be compensated. It does not specify what form the compensation should take. The policy states that caregivers who work in areas with ‘poor terrain’ be provided with ‘relevant resources’, such as bicycles (page 14). It states that caregivers should be covered by insurance. The health and safety sub-section of administration and management includes a requirement for training. The section on recognition and retention of caregivers:

• requires that organisations monitor causes, signs and symptoms of burnout and take remedial action, and put in place measures – such as debriefing and counselling – to manage stress

• requires that caregivers be informed about and benefit from an incentive ‘structure’ that includes:

o a minimum monthly package of specified items including basic food items, Vaseline and soap to the value of US$15 which may be provided in cash or kind. Organisations can apply for exemption if they feel unable to provide this package.

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o consideration for recruitment into the organisation when opportunities arise o other in-kind incentives which the organisation is able to provide (with the

proviso that tools such as bicycles, uniforms, stationery and transport to and from work should not be considered as incentives)

o free medical treatment at the clinics and hospitals to which they are affiliated

• where possible, support in respect of income-generation activities The section on technical support requires that caregivers be provided with care kits that are replenished as and when necessary, transport costs, uniform and other clothing, shoes, hat and raincoat, name badge, stationery and other tools essential for their work.

Country  contextual  information  The national coordinator for treatment, care and support employed by the NAC of Zimbabwe provided further background information. This informant was ideally placed to provide information relating to care and support in Zimbabwe, as she is the only officer responsible for CHBC – there is no one in Zimbabwe’s MoHCW who has this responsibility. Our informant highlighted a range of categories of community caregivers in Zimbabwe. She explained that when one speaks to employees of the MoHCW about caregivers, they refer to the village health worker. The work of village health workers encompasses health care in general, which includes primary health care, malaria, TB and mother-to-child transmission, with care work defined more narrowly constituting only a small part of their work. In recent times, village health workers have been paid by the MoHCW including through funding from the Global Fund. The second category of caregivers is secondary caregivers. These workers provide HBC – bathing patients, providing palliative care, ‘you name it’. With the arrival of ART the scope of practice has changed for these caregivers, with only around 3 per cent of clients bedridden and requiring a lot of practical nursing care, about 70 per cent living with HIV, with the rest having other chronic illnesses. According to our informant, because the number of bedridden people has been reduced, the MoHCW reason that there is ‘no more work’ for caregivers. Moreover, with the introduction of ART, some donors have switched their focus to other areas. As a result, several NGOs lost some funding resulting in some caregivers not receiving compensation. However, our informant described how caregivers have been taught an extended role that relates to health promotion for HIV prevention, treatment, care and support (‘positive living’), treatment literacy, adherence counselling, psychosocial support, and even palliative care. In addition, the caregivers report information about patient conditions which assists nurses. Meanwhile, some of the former work continues. For example, our informant reported that on recent field trips she has seen patients on treatment, many of whom had had a reaction to the drugs, and were now bedridden, some with bed sores. HBC is an extension of the health service with secondary caregivers reporting to the MoHCW via nurses at their local health facility. Caregivers come to the clinic to replenish the care kits. There are referrals of patients between the nurse and the caregiver. However, our informant argued that current support from nurses at the district level needs to be improved, in terms of technical support and training. Secondary caregivers used to be supported by the AIDS levy, which represented a 3 per cent levy on the income tax paid by individuals, companies and trusts. Currently, most secondary

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caregivers in Zimbabwe are supported by NGOs, including the Global Fund. The NAC, to which the AIDS levy is initially channelled, has recently increased the funding provided to the MoHCW. However, ART was prioritised and allowances for secondary caregivers were not funded for the current financial year. Some care kits were procured and delivered, but these were not sufficient for the number of patients. In previous years, the Zimbabwe government channelled Global Fund money to organisations that employ or train caregivers. The third category of caregivers in Zimbabwe are health promoters, who do the same work as secondary caregivers but in addition provide health education at local facilities such as clinics. Health promoters are paid through the local government councils, and are better paid than village health workers and secondary caregivers who do HBC. A fourth category of community caregivers is community-based distributors who undertake family planning work which includes the distribution of contraceptives. These workers are employed and supported by the Zimbabwe National Family Planning Council. Behavioural change facilitators form a fifth category of caregivers, and are involved with ‘demand creation’. These workers educate the community in terms of programmes (such as HIV prevention), and they also engage with the community leadership. Behavioural change facilitators are employed by NGOs and currently the NAC works with them through a project funded by the Global Fund. A sixth and final category of community caregivers are local villagers who on a voluntary basis work in child protection committees for OVC, which are monitored by the Ministry of Social Welfare. Our informant referred to the caregiver’s policy (described in previous sub-section) which was developed through the HBC programme and focused on volunteers. The policy is applicable only to secondary caregivers, behavioural change facilitators and child protection committees for OVC among the various categories of workers described above. The policy was signed at the end of June 2011, printed and distributed, but there is not a great deal of awareness about it. Since Zimbabwe does not have a volunteer policy there is some discussion as to whether the policy should be applicable to all types of volunteer work in the country. Our informant said that the government regards community caregivers as volunteers, not as workers (employees). It therefore needs to be clear that ‘they are not like the worker who gets a salary, but [nevertheless] volunteers do need to be paid for the work they are doing’. She recognised that the recommended monthly rate of US$15 (including in-kind payment) ‘is a pittance’. According to our informant, every organisation should raise this money to pay their caregivers, and if this is not possible they should inform the MoHCW. Our informant explained that most community caregivers live in rural areas, and that while the US$15 will hold little value for caregivers in urban areas who face higher costs of living, in the rural areas ‘there is a bit of value in the US$15’, which can also be ploughed into a project – such as a livelihoods project – if it is paid in cash. Our informant noted that all secondary caregivers who are employed (paid) are employed (paid) by NGOs. However, many of those trained are volunteering without compensation, and in some cases they are not even volunteering because some NGOs have closed due to no funding. Some have joined currently funded programmes such as the behaviour change programme or the village health worker programme. As an example of good practice in Zimbabwe in respect of compensation and support for community caregivers our informant described a project in which an NGO gave caregivers money but also allocated ground at the NGO’s premises. The caregivers worked together on the land and were able to utilise whatever they produced. In another project, a goat was looked after

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by a family that had a community caregiver in it; the goat had a kid; the kid stayed with this family and the goat was given to the next family that had a community caregiver in it; the goat had another kid, and so on, enabling community caregivers to benefit from owning a goat. In addition, our informant remembered an internal savings and lending project. In terms of bad practice, our informant gave the same example as our Zambian government informant: the problem of differences in compensation and benefits provided by different NGO programmes. This was considered especially unfair when differences were found in respect of items such as bicycles used in caregiving. In terms of sustainability of caregivers, our informant believed that the way forward could lie in finances being ploughed into livelihoods projects that caregivers can work on and benefit from, and which can be sustained after donors have left. However, funding is needed to start projects such as this, and according to our informant, the MoHCW is currently not doing as much as they could be in terms of lobbying for such funding.

Voices  from  funded  projects  in  Zimbabwe  Family AIDS Caring Trust FACT is a Christian-based private voluntary organisation established in Mutare in 1987. It came into being as a response to HIV, and draws on volunteers from different churches who have been trained in basic nursing care. FACT’s programmes currently cover the whole of Manicaland province and beyond. In Chimanimani, FACT has two caregiving projects running, namely the CHBC programme funded by the Global Fund through the Hospice and Palliative Care Association of Zimbabwe, with 60 carers and the palliative care programme (on which this research focused) with 30 carers funded by Tearfund and The Diana, Princess of Wales Memorial Fund. The PC project built a good relationship with the MoHCW which laid the basis for caregivers to work with local health institutions. Caregivers are organised into clusters and each cluster is linked to a local health institution. The sisters in charge of the health facilities coordinate with the caregiving team, monitoring and supervising their activities and providing emotional support. The caregivers refer patients to the clinic where they are given priority to get treatment, and nurses refer patients to caregivers for follow-up. Now that people are living positively with HIV as a result of ART, the project scope has widened to provide care to cancer, diabetes, hypertension patients and people with other chronic conditions, such as epilepsy. Caregivers also assist with screening, care and monitoring of TB patients. Caregivers are organised in clusters, and cluster supervisors are responsible for organising cluster meetings; assessing the needs of patients and making referrals, submitting cluster reports and making sure that income-generating projects are working well. They provide emotional support to both secondary and primary carers and they disseminate project information to caregivers. Secondary caregivers monitor adherence to treatment (for example through pill counts), provide counselling to patients and other family members including primary carers, encourage pregnant mothers to use voluntary counselling and testing centres and to receive antenatal care (and prevention of mother-to-child-transmission if necessary), keep track of patients’ health records and inform cluster supervisors of any changes, as well infection control. Selection of caregivers is done on two levels. At the church level, church pastors from different mainline churches are asked to provide caregivers. (The white garment churches and other new

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Pentecostal churches are not willing to be part of the programme.) In addition, village heads are asked to provide the names of people who could work as caregivers. The proposed caregivers are then vetted by nursing sisters of the local clinics. Criteria used include: the person should be a role model in the community, have good morals and be of sound health, be able to maintain patient confidentiality and be aged between 30 to 40 years (that is, be mature). Caregivers also need to be able to read and write, be committed to assisting others and be available in the community most of the time. Desired characteristics include owning a cellphone, being computer-literate so as to be able to write reports and do research, and being able to speak English (for reading and writing reports) and a local language. Both interviews and the FGD made it clear that the work of carers has changed over time. Originally, secondary caregiving work primarily involved physical contact with patients. Primary caregivers have, however, taken over some of these roles and secondary caregivers now focus on monitoring, and where necessary refer patients to clinics. Caregivers said that each of them cared for between two and six bedridden and housebound patients whom they visited twice a week, and between six and thirty up-and-about patients whom they met with once a month through support groups. Caregivers expressed unhappiness that they did not receive financial allowances outside of reimbursements for transport expenses. As one commented: ‘It is sad to know that village health workers who are doing the same type of work are paid by the government yet we do not get anything.’ The caregivers had received training on income-generating projects after which they were asked to write group project proposals and were given seed money for their projects, which initially involved goat-rearing and poultry. One group later started an income savings and lending project. The amounts received ranged from US$250 to US$735. Some focus group participants expressed concern that they had been told the ceiling was US$300 only to learn later that one group had received US$735. One participant was clear that the seed money was ‘the best thing that has ever happened to us so far’. Those in the goat-rearing project suggested that they needed to be paid a monthly amount to assist in taking care of their immediate needs while waiting to benefit from their project. The livelihoods training was provided by FACT’s field officers with support from the Ministry of Agriculture. In terms of material support, caregivers receive uniforms, T-shirts, bags, trousers for men and skirts for women, umbrellas, tennis shoes, soap and Vaseline. They also receive preferential treatment at local clinics. The project coordinator reported plans to procure kits with basic infection control items. Caregivers are expected to complete the MoHCW’s National Home Care training before they start caregiving. They receive certificates of attendance and these can be used to seek caregiving employment in other districts or projects. The initial training is supplemented by regular refresher courses informed by gaps noted by the project coordinator. Other caregivers view palliative care as having specialised training. The programme coordinator said caregivers under other projects at first felt inferior to palliative care carers. FACT had to explain to them how different projects are funded. She highlighted the low turnover rate among caregivers in the PC project as proof that things are working well within FACT and the PC project in particular. In terms of emotional support, at the time of the interview FACT had employed a social worker who was to be based in Chimanimani, so as to be close to the caregivers. The sisters in charge of clinics, a pastor who is a caregiver and cluster supervisors provide emotional support during debriefing sessions with caregivers. All caregivers who participated in the FGD agreed that the

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nature of their work requires a lot of emotional support and were grateful that it was being provided. Focus group participants said that stopping the current support to caregivers would have a serious impact on the project. The income generation support, reimbursement of transport, and uniforms were said to be especially important for continuation of the work. Informants said that in the past, caregivers received both material and financial compensation in the form of cash incentives, foodpacks and nutritional hampers because there were many players supporting them during these times. According to the project coordinator, the support is no longer provided because most projects are ‘bleeding’ due to diminished donor support. The coordinator expressed concern as to whether they would ever be able to find replacements for the current older and dedicated generation of caregivers who continued to work without adequate compensation. One of the caregivers expressed doubt that their children would be prepared to do such work for nothing. Caregivers said they would appreciate a monthly allowance to help them buy soap and other commodities that would help them look presentable when visiting patients. Many caregivers rely on vending for their survival and advocated for a workshop allowance which would help compensate for income lost while attending workshops. Bicycles were viewed as very important equipment for caregiving work because they enable caregivers to visit patients faster and free them to do income-earning activities as well as cut travel expenses to submit reports. Medical, education and funeral assistance were considered important but missing elements in the compensation and support of caregivers. Most caregivers said they had thought of stopping caregiving, with virtually all reasons related to the economic costs of caregiving and lack of compensation. The main reason why they had not stopped was because they were hopeful that one day they would get recognition and rewards for their hard work. Some said further that they could not turn their backs on the patients who relied so much on them for assistance. Informants were aware of caregivers who had left both the palliative care and other projects. The information included a report that a 32-year-old caregiver had gone back to commercial sex work after failing to receive compensation for caregiving. Zimbabwe National Network of People Living with HIV The Zimbabwe National Network of People Living with HIV (ZNNP+) is a CBO based in Chipinge district of Manicaland which was established in 1992. ZNNP+ does not have offices at district level and their activities are coordinated through the NAC offices. The ZNNP+’s caregiving project does not receive any funding for its programming. However, the Global Fund has been funding training of trainers for the district focal person, who then must ensure that the training cascades down to other caregivers. WV does not fund any of ZNNP+’s activities but at times contributes transport assistance. ZNNP+ has a team of 32 caregivers in Chipinge, with four caregivers in each of the eight wards. All the caregivers are living with HIV. There are few male caregivers, as men generally do not want to share their HIV status with others and are not interested in doing voluntary work. Caregivers use their life experience and knowledge to support patients in the community, through home visits, support groups and community meetings. In the absence of a coordinating structure other than NAC, ZNPP+ caregivers themselves agree on how things are done in the caregiving project. Caregivers are selected from support groups for people living with HIV. The criteria used in selection include that they should be able to maintain confidentiality, writing skills for report-

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writing and record-keeping, commitment to help others, availability in the area, an outgoing personality, and an age between 30 and 50 years. ZNPP+ said that their work had changed and become easier over time as primary caregivers took responsibility for more of the tasks, leaving secondary caregivers to concentrate on supervision. The availability of ART had helped reduce the number of bedridden patients, and thus reduced the burden in respect of regular visits and monitoring. Caregivers said that each of them looked after between three and ten patients. The frequency of visits depended on the conditions of patients but one to two visits per week were recommended. ‘Up and about’ patients were met once a month through their support groups. Caregivers also took advantage of other community gatherings to provide community members with information on HIV and engaged patients at the opportunistic infection clinic. This helped reduce the number of visits. Due to non-availability of funding, ZNNP+ does not provide financial support and compensation to its caregivers. There is also no in-kind support, although in the past caregivers received foodpacks and cooking all through support from other organisations. Similarly, while patients previously received foodpacks, laundry soap and Vaseline, they now receive only reading material from the clinic. Caregivers said that they had themselves provided soap, food and even cash to assist patients because they felt they could not just walk away when a patient was desperate for help. The caregivers are meant to receive gloves from the local clinics but most of the time these are not available. Caregivers reported that some organisations had previously paid school fees for children whose parents were living with HIV. However, many organisations had since left because of political pressure (they were accused of supporting regime change agenda and siding with the opposition) and because there were fewer people requiring care because ART was being provided. The focal person said that emotional support was provided through MoHCW’s ward-based health technicians, NAC ward-based focal persons and other caregivers. However, caregivers reported that they received no emotional support. All caregivers had received the National Home Care training which is the minimum MoHCW requirement before starting caregiving. Nurses from local clinics or hospitals, the NAC, and the ZNNP+ district focal person were reported to have facilitated training for ZNNP+ carers, but there seemed to have been little, if any, refresher training. Caregivers said that they would like to receive a monthly financial incentive, regular training, protective clothing, uniforms and infection control kits. They continue to provide care but lack motivation due to the absence of compensation and support mechanisms within ZNNP+. Participants in the study did not know of any ZNPP+ caregivers who had stopped caregiving but knew people from other projects who have done so. They reported that some caregivers had left other projects after realising that the projects were not able to provide them with money to send their children to school. Some had stopped caregiving when organisations such as Médecins du Monde, which used to pay caregivers, withdrew. A key reason why ZNPP+ caregivers do not leave caregiving is the support they received as people living with HIV. Indeed, they said that if it were not for their status, they would have left long ago due to lack of motivation. Island Hospice, Harare Island Hospice is a local NGO based in Harare that was established in 1979. It was the first hospice in Africa and a well-known centre of excellence in the provision of palliative care in Zimbabwe and in the region. Generally, Island Hospice does not provide initial training to

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caregivers. Instead it provides the palliative care component to carers who are already working as caregivers. Besides training caregivers (including those from FACT’s PC project), Island Hospice has its own caregiving project in Harare, Chitungwiza and Chikwaka. The organisation’s caregivers previously provided care only to cancer patients, but care has since been extended to include HIV, motor neuron disorder and renal failure patients. Previously, Island Hospice did not pay financial incentives to caregivers but instead provided reimbursement of transport expenses, uniforms and training. Currently, some Island Hospice caregivers are meant to receive US$14 per month through Global Fund funding. However, delays in arrival of these funds has meant that the caregivers have remained unpaid. Island Hospice caregivers also have uniforms, kits (for needy patients only), ongoing training, wheelchairs, walking sticks (available for needy patients), emotional support and community gardens. The community gardens, for which training and seeds were provided, supply vegetables (for sale or consumption) for OVC as well as for the caregivers themselves. The coordinator was especially confident about the emotional support provided: ‘This is our business; this is what we do best for our caregivers.’ Emotional support is provided through debriefing sessions, supervisory sessions, group sessions and mentorship sessions. Carers are taught about self-care and encouraged to take time out for themselves. Island Hospice recommends that its caregivers set aside two or three days per week for caregiving, so as to have sufficient time to spend on income-earning activities for their own family. However, the Global Fund requirement that each caregiver take care of eight patients means that some caregivers need to spend more than three days on caregiving. The coordinator said that caregivers are instructed not to support patients from their own pockets, but said that some caregivers did so in order to be accepted by the patient or the family. General discussion Both FACT and ZNPP+ came into being in response to the AIDS pandemic. Both have since expanded their scope to include other chronic illnesses such as TB, cancer, diabetes, epilepsy and hypertension. The shift is probably more marked for FACT, especially within the PC project. Caregivers’ roles have changed over time in respect of HIV as primary caregivers have taken over some of the roles previously performed by the secondary caregivers. While the descriptions of the tasks carried out by the caregivers were similar in many respects, the degree of formalisation and professionalisation differed, with ZNPP+ less formal and professionalised than Island Hospice. ZNPP+ caregivers were also less supported in terms of the various forms of compensation and support investigated in the study. However, there had reportedly been zero turnover among ZNPP+ caregivers, while some caregivers had left FACT and others had thought of doing so. Those who had not left questioned whether the next generation would produce future caregivers without changes being made in approaches to compensation and support. The fact that ZNPP+ caregivers remained with the project almost certainly reflects their status, as people living with HIV, and the other forms of support – perhaps not directly related to their caregiving role – that they received from ZNPP+ and each other.

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Going forward The case studies of the organisations in the two countries spanned a range of different projects, from relatively sophisticated (such as Island Hospice and FACT) to very basic community-based (ZNPP+ and St Peters). Nevertheless, there were many consistent messages across projects, as follows:

• The nature of caregiving has changed with the availability of ART. Several factors contribute to this. Firstly, availability of ART means that HIV infection is no longer a death sentence, and instead patients have a chronic condition that can be managed. Secondly, and linked to this, far fewer patients are bedridden and in need of onerous – and unpleasant or even scary – caregiving tasks on a daily or even hourly basis. Thirdly, and again linked, primary caregivers within the family have become more willing to take on caregiving tasks as both the burden and stigma have lessened. Organisations seem to have responded to this change by expanding their scope to other chronic conditions. Internationally, this has also seen the definition of ‘palliative care’ expand to be similar to the management of chronic conditions. Caregivers have faced new tasks, such as monitoring that patients comply with medication requirements and encouraging behaviour change. It seems that in many cases they might not have been adequately trained for these tasks, and may not be the best people to do all the tasks.

• Availability of funding has decreased markedly. Caregiving was to some extent always the ‘forgotten pillar’ in terms of funding, a factor which resulted in the widespread use of voluntary community-based labour. Funding has perhaps decreased over time for HIV as a whole, but has definitely decreased in respect of caregiving, as funders and governments channel money to ART (or issues other than HIV). In some cases this reprioritisation of care funding reflects the perception that care is no longer needed in the same way. In other cases it reflects a shift in focus of major donors such as PEPFAR and DFID to ‘systems strengthening’ rather than funding of direct delivery.

• The limited past support and compensation previously available for caregivers has been further curtailed. Across both countries, examples were given of support that was previously given but no longer affordable. The reduction ranged from provision of food (especially in Zambia, with the withdrawal of the World Food Programme) to availability of regular training.

• All projects were said to provide initial basic training. However, in most cases it seemed that regular training was not provided to the extent planned or desired. The failure in this respect was generally blamed on lack of funding.

• While seven of the eight INGO representatives reported that the caregiving projects they supported provided various forms of emotional support to caregivers, this form of support was barely mentioned by caregivers in the case study projects.

• Across all projects, caregivers expressed a desire to receive monetary payments. In one of the Zambian organisations, food was ranked higher than money, but even in this organisation caregivers would have liked financial reimbursement for costs such as transport. Money payments are wanted but very seldom given by these organisations. Where caregivers were said to have left projects, this was often for financial reasons, such as to have time for income-earning or to join another project where compensation was given.

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• As evidenced by movement of caregivers from one project to another, caregivers expressed unhappiness at seeing others being paid while they were not. The comparisons were not restricted to caregiving, but were also made in respect of other groups of workers, such as domestic workers. The Zambian policy requires that there be harmonisation of benefits across organisations working in a particular area. Such harmonisation is currently clearly not in place. The motivation for such harmonisation could be protection of caregiver interests, but could also be avoidance of caregivers being able to ‘vote with their feet’ to reject poor support.

• Financial and in-kind compensation to caregivers was not mentioned frequently by INGOs and case study organisations. Logistic and material support were far more frequently mentioned. This suggests that INGOs and country organisations focus their contributions on the work of caregivers rather than caregiver well-being.

• Several organisations had supported income-generation projects for both caregivers and patients. The reported results of this assistance were mixed. It was also not clear whether these efforts were introduced for the benefit of the caregivers, or primarily for the benefit of the patients and/or project. In some cases, organisations recognised that caregivers’ work on either the group or individual income-earning required that their caregiving hours be limited. However, there was little, if any, mention of the time that the primarily female caregivers need to spend on (unpaid) caregiving tasks in their own homes. In several cases the income-generation projects seem to have raised suspicion of fraud and allegations of unfairness. Overall, it seems that income-generation support is not a quick and easy fix.

Despite all these constraints and limited (if any) compensation, many caregivers continued with their tasks and continued to gain pleasure from improving the well-being of fellow community members. Such perseverance was most likely where caregivers had personal reasons for continuing, such as religious faith and conviction, or the benefits they derived from the project with regard to their own status as people living with HIV. The literature review, in-depth interviews with INGO, government and development partners, and interviews and FGDs in the case study organisations highlighted a range of contradictions and complexities. These included the following:

• a mismatch between what is contained in country policies and what is found on the ground;

• a mismatch between the compensation and support that INGOs report is provided to caregivers and what is found on the ground;

• a mismatch between what is reported by different key informants, such as those from government and development partners;

• a wide variation in the type, and also the extent, of support reportedly provided by INGOs to the local caregiving projects which they report they support (which then implies a wide range in the extent to which INGOs can influence the support and compensation provided to caregivers);

• a multiplicity of types of caregivers and ongoing expansion of understanding of what ‘care’ involves. In particular, there is the expansion of the definition of ‘palliative care’ to encompass most of what would previously have been known as care for people with chronic conditions, but even within the eight INGOs investigated there were some (such

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as m2m) that seemingly have never provided the type of care generally classified as ‘home-based care’ for people living with HIV.

The variation in type and extent of support reportedly provided by INGOs, and differences between what was reported by the INGOs and the local projects that they supported, could be interpreted as raising questions about accountability. As noted above, the issue of accountability of projects to INGOs, and of INGOs to their own donors, was one of the issues in which the UK Consortium expressed interest. It is, however, difficult to pronounce on accountability without knowing whether the INGOs and donors prescribed approaches in respect of compensation when providing funding and other support. In the interviews, INGOs tended to say that they did not prescribe. In the lack of prescription, one cannot interpret the mismatch as lack of accountability. The November 2013 STOPAIDS seminar came up with three questions which they hoped this research would help answer. The questions, and some brief possible answers, are as follows:

1. What do we mean by ‘monetary compensation’? Does it, for example, include payments such as a lunch allowance? Unless there is a regular monthly payment, whether a wage or stipend, caregivers are unlikely to perceive themselves as receiving monetary compensation. Lunch allowances and the like constitute a form of reimbursement rather than compensation in the sense of ‘pay for work done’.

2. What do we include as ‘caregiving’? Does it include everything from intensive physical care to a weekly visit for company and conversation? As noted above, the use of the term ‘caregiving’ seems to have expanded, in a way that is perhaps not helpful for the discussion here. HBC in the narrow sense was initially introduced in response to the inability of the formal health system in developing countries affected by HIV to respond to the need for care of patients. Sending patients home to be cared for there seemed to be the only possible solution, with HBC introduced as a cheap way of ensuring that the families of those who were ill were not completely overwhelmed and that patients received some form of care. In essence, however, the HBC caregivers were performing a role that should have been performed by the formal health system. It is recognition of this fact that constitutes one of the strongest motivations for adequate compensation to be given to community caregivers. If ART has changed the scenario, with fewer desperately ill and dying patients, the need for and role of caregivers needs to be reconsidered. Good Samaritans who visit their ill neighbours would presumably not expect compensation. Those who visit ill people who are not close friends but who do not have family who can do basic tasks for them, such as housework and basic care, could be considered as part of the health or social welfare workforce.

3. How do we align a minimum package of support for caregivers with an understanding of a minimum package of services rendered? The answer to this question links to that for the previous question. Within each country there needs to be a discussion as to what government (with donor support) can and should provide as a minimum package of support to those who are ill, and how those outside government who play a role in seeing that this minimum package is provided should be recognised and compensated.

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References Blackman Rachel. 2005. HIV and AIDS: Taking action. ROOTS Guide 8. Tearfund: Teddington. Budlender, Debbie. 2009. Report on interviews with volunteer caregivers in six countries. Prepared for Huairou Commission. Community Agency for Social Enquiry: Cape Town. CAFOD. Undated. Valuing volunteers: Considerations on involving volunteers in development and humanitarian response programmes supported by CAFOD. London. Caregivers Action Network. 2013. Community caregivers: The backbone for accessible care and support: Multi-country research: Synthesis report. Department for International Development. November 2012. Business case for human resources for health in Zambia programme. Lusaka. Gender and Media Southern Africa and VSO-Regional Aids Initiative of Southern Africa. 2010. Making care work count: Policy handbook. Johannesburg. National AIDS Council. August 2011. National community and home based care caregiver policy for Zimbabwe. Republic of Zimbabwe: Harare. National Aids Council Technical Working Group on VCT/HBC. March 2007. Zambia national minimum standards for community and home-based care organisations. Republic of Zambia: Lusaka. PEPFAR/New Partnership Initiative. 2010. Scaling up demand for HIV prevention services & expanding care & support programs through churches in Zambia: Technical Operations Manual. Zambia. UK Consortium on AIDS and International Development. 2010. HIV care and support: A roadmap to universal access to 2015: Consensus statement. Prepared for international conference 9–10 November 2010, London. UK Consortium on AIDS and International Development. 2011a. Care & support: The forgotten pillar of the HIV response. London. UK Consortium on AIDS and International Development. March 2011b. HIV care & support Roadmap to achieving universal access to HIV care and support by 2015. London. UK Consortium on AIDS and International Development. March 2012. Past due: Remuneration and social protection for caregivers in the context of HIV and AIDS. Policy brief. UK Consortium on AIDS and International Development. Undated. Care and support briefing for Michael Sidibé.

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United Nations General Assembly. 9 August 2013. Report of the special rapporteur on extreme poverty and human rights. Sixty-eighth session. Item 69 (c) of the provisional agenda. Promotion and protection of human rights: Human rights situations and reports of special rapporteurs and representatives. New York.

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Interviewees INGO  interviewees  Agatha Dodo, CAFOD (email) Clive Ingleby, VSO Hannah Newth, SC Cote d’Ivoire Idzai Murimba, Tearfund Zimbabwe Kate North, Help the Hospices Kathrin Schmitz, m2m Kendra Blackett-Dibinga, SC (email) Maurice Sepiso, WV Zambia Shannon Thomson, Tearfund Sikotshi Sibanda, WV Zimbabwe

Government  interviewees  Caroline Sirewu, NAC, Zimbabwe Patrick Banda, MoH, Zambia

DFID  interviewee  Silke Seco-Grutz, DFID Zambia In addition, project staff and past and current caregivers were interviewed for case study projects in the two countries.