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Crossing the Divide: STOPAIDS. Caregiver Seminar November 2013 David Deakin, Head of HIV, Tearfund Report on research in progress Voices of grassroots.

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Presentation on theme: "Crossing the Divide: STOPAIDS. Caregiver Seminar November 2013 David Deakin, Head of HIV, Tearfund Report on research in progress Voices of grassroots."— Presentation transcript:

1 Crossing the Divide: STOPAIDS. Caregiver Seminar November 2013 David Deakin, Head of HIV, Tearfund Report on research in progress Voices of grassroots caregivers and supporting organisations in determining adequate compensation and support

2 Objectives of the research To explore the understanding, practices and attitudes of international non-governmental organisations (INGOs), local caregiving organisations and (secondary) caregivers in terms of caregiver retention, support and compensation. To make recommendations on good practice for caregiver compensation and support in HIV care and support programming

3 Methodology Two phase mixed methods research study: Phase 1: Desk Review and INGO Interviews Annotated summary of key documents Telephone interviews with INGOs Phase 2: Case Study Development (4) Zambia and Zimbabwe selected as case study countries through consultation with participating INGOs Interviews with one government and one DFID representative per country Interviews and focus groups with key stakeholders in CBOs that employ (secondary) caregivers Interviews and focus groups with secondary caregivers

4 Interviews with INGOs Catholic Agency for Overseas Development – CAFOD (faith-based) Help the Hospices Mothers2mothers Save the Children Tearfund (faith-based) Voluntary Service Overseas World Vision (faith-based)

5 Phase 1: Hearing from INGOs Observations so far!: No consistent approach to compensation and support of secondary caregivers Some INGOs have organisation-specific guidelines that are developed and utilised All INGOs adhere to national guidelines on HBC Progress in developing guidelines entitled, “Making Care Count” Bottom line: no standard criteria

6 Support (non-monetary) offered to secondary caregivers Training (initial and refresher) In-kind support (agricultural inputs, building materials, etc.) Equipment (medical supplies, bicycles, uniform, HBC kits) Supplementary food for clients Psychosocial and/or spiritual support Mentoring and supervision Exchange learning visits Community Care Coalitions and organisational capacity building; links with District AIDS Task Force Certificates and volunteer recognition

7 Support (monetary) offered to secondary caregivers Transport allowances Savings and loans group (establishment and training) Annual allowances Monthly stipends (+add’l supervisor stipend) Training per diems Salary for five 8-hour days per week (contract)

8 No standard criteria “The government does not provide standards on compensation and conditions of work [for caregivers in this context]” “We need to develop an approach that is consistent across NGOs and within our own projects” (No government/DFID feedback yet)

9 Working for free “I have become increasingly convinced that organisations and governments cannot expect people to do this work for no money” “[Caregivers] cannot be expected to do something for nothing”

10 Inconsistent messaging Compensation and support of caregivers is valued in principle by many NGOs, but not insisted on with CBO partners (ie: not a requirement in programming or grant compliance) “Low or no pay [for caregivers] is especially problematic when an organisation visits projects in expensive 4x4 vehicles”

11 Sustainability and Community Ownership Compensation needs to… “be sustainable after we leave” “sustain an ethos of volunteerism” “The first principle, which is compulsory, is that it should not cause dependency, but instead should support and complement government efforts in a way that is sustainable”

12 Caregiving as an essential service “Compensation should be in line with what is paid to others who do similar work in that country” Caregiving provided by CBOs is “an absolutely essential service; they provide the first line of care for people with HIV and AIDS – a service which is not available anywhere else in the countries in which we operate.”

13 Phase 2: Hearing from Caregivers Case Studies Data collection done by local researchers Interview with programme manager or similar person at CBO level Focus group with current caregivers Interviews with approximately four past caregivers Case studies: World Vision-supported organisation in Zimbabwe Tearfund-supported organisation in Zimbabwe (plus Island Hospice supported by Tearfund and Help the Hospices) VSO-supported organisation in Zambia CAFOD-supported organisation in Zambia

14 7 preliminary observations (across all 4 case studies)

15 1. The nature of caregiving has changed with anti- retroviral therapy (ART) and an increased family role. “Originally caregiving was more of physical contact with patients all the time but now it has shifted…. There is [now] a primary caregiver in the family who has taken over some of the roles from the secondary caregivers.” [Zim] “In my area I have two [clients] who are serious and I spend more time with them. Fifteen others are up and going so I meet them once a month. [Zamb] ”

16 2. Funding has decreased markedly “[Previously] there were a lot of [donor] organizations supporting people with HIV/AIDS including the carers. Now that we have people living with HIV [i.e. on ART], most organizations have left.” [Zim] “At some point we were also getting food from World Food Program and you know World Food Program is no longer working in Zambia.” [Zamb]

17 3. The limited past support has been further curtailed “Each care givers was supposed to be equipped with a piece of soap, a hand towel, water, pain killer… but things have changed over time with dwindling funding… When it was well funded each care giver would receive a chitenge [cloth wrap], gum boots, an umbrella and a blanket but as time went on, because of dwindled funding, we could not meet these compensations” [Zamb] “[At] this time, there is nothing we are getting… Only God will reward us” [Zambia]

18 4. Money payments are wanted, but very seldom given “We do not have any compensation and no one is recognising our efforts. Under [previous project] we used to get incentives in Zim dollars and groceries and we used to be well motivated.” [Zim] “[The worst part of caregiving is] being mocked [and seen] as people who work for food handouts by some members of the society.” [Zim] “Our colleagues have since ceased as caregivers in order to concentrate on their business.” [Zamb]

19 5. Caregivers are unhappy when they see others receiving while they do not “House maids do not work hard but they get about $180 per month. We work harder and we get nothing.” [Zim] “The fact that caregivers in other projects are paid and we are not makes me think of stopping.” [Zim] “All of us here we have planned to stop as care givers… It’s better to go where they can give us money.” [Zamb]

20 6. Results from support for income- generation projects are mixed “Caregivers are getting training to do self-help projects even though … [HIV] projects can no longer sustain these because projects are bleeding.” [Zim] “[The IGA project] is doing well and from it we are getting money for our needs. Members borrow from the pool of funds and pay back with some interest.” [Zim] “It couldn’t sustain because some misused the money and did not bring the money back after making profit, so we have no source of income.” [Zamb]

21 7. Regular training is often no longer provided “Things are changing everyday, new drugs are coming in so carers need to be updated regularly. But for [this project] this has not been possible due to lack of funding.” [Zim] “We train them when we have funds.” [Zamb] “We need refresher courses on HIV/AIDS and TB because some of the clients might be more learned than the care givers and if it happens that way, the client will lose hope in listening to you.” [Zamb]

22 And yet… caregiving continues “We visit anyone because our Lord Jesus never used to be selective when he was teaching. Likewise we as caregivers don’t choose who to visit because today it could be the other person, tomorrow it could be me.” [Zamb] “For our project, turnover is zero because all our members are HIV+ and on treatment… They would never think of dropping [out] because they want all the support they can get.” [Zim]

23 Next Steps Analysis of data; finalisation of case studies and completion of research report Research to be completed by January 2014 Recommendations developed based on the research outlining good practice in caregiver compensation and support Dissemination through STOPAIDS. Membership and other networks Embedding recommendations into NGO Code of Good Practice for NGOs Responding to HIV and AIDS


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