1. Home-Based Care Volunteers Results from A Study of Home- Based Care Volunteers in the SUCCESS Program: Zambia. Shannon Senefeld Catholic Relief Services

2. “Home-based care is taking us back to the root of human coexistence. It reminds us that we all have the responsibility to one another. If we hold hands through this tragedy... we will be able to retain our humanity and will come out of this epidemic as a stronger community.” Joy Phumaphi, Minister of Health, Botswana (as quoted in WHO, 2002)

3. Introduction HBC Volunteer (HBCV) Survey was initially presented to SUCCESS HBC Diocesan Coordinators at an annual planning workshop. Coordinators expressed interest in implementing the surveys in their Dioceses, so the survey was revised with partner input in order to make it appropriate to the Zambian context. Each Diocese agreed to randomly survey at least 50 HBCV.

4. Methodology In all four dioceses, the following steps were followed: 1. Survey translated into local language(s) by HBC volunteers or diocesan staff 2. Survey back-translated with different participants or with a group of translators in collaboration with Survey Coordinator 3. Survey presented to HBC site coordinators as a volunteer activity. The Survey Coordinator discusses the objectives of the survey, how coordinators can randomize those they select, and the timeframe for implementation and submission.

5. Methodology Continued…. 4. Site coordinators were given the option to participate. Numbers of survey per site were decided upon with consideration to: Total number of participating sites How many volunteers each site has Whether or not some sites have been supported by SUCCESS for a significantly longer period of time than others 5. Surveys printed and distributed, when possible with specific requests by site coordinators as to which translations are most appropriate for them and how many 6. A timeframe for submission to the diocese is decided upon, normally 2-4 weeks

6. Respondents 270 Respondents Representing HBCV in Mpika, Mansa, Mongu, and Solwezi Dioceses 58% female 67% married, 10% widowed, 19% single 88% of male respondents were married; only 53% of female HBCV were married.

7. HIV in the lives of the carers 95% of HBCV cared for at least one child, and 65% cared for more than 4 children 78% cared for at least one orphan in their household (HH). Women HBCV were more likely to report caring for orphans (p<.01). 9% of HBCV reporting that someone in their HH is living with HIV; 39% reported not knowing. Women HBCV were more likely to report the presence of someone with HIV in their HH (p<.05).

8. Income and Incentives 75% of HBCV reporting income levels in the lowest quartile in the area. Nearly all (93%) were unemployed. 44% reported receiving some sort of incentive for volunteering. No HBCV reported receiving cash incentives. More than half (58%) reported sharing their food with their clients. HBCV who received incentives were more likely to share their food with their clients.

9. Client load and retention Most HBCV (35%) reported supporting only 1-3 clients, but 23% reported assisting more than 9 clients. The majority (62%) spend 1-4 hours a week volunteering, but some (15%) volunteer more than 8 hours a week. The majority of volunteers (55%) had volunteered for more than 3 years, and 85% planned to remain volunteers for more than 4 more years. Women had been volunteers longer than men, although this may be because men HBCV are only being actively recruited recently.

10. Psychosocial Correlations HBCV who were unemployed were more likely to exhibit increased depression, anxiety and stress scores as well as lower quality of life scores. HBCV who reported more frequent caregiver meetings have lower depression, anxiety and stress scores. The number of clients reported by the HBCV is linked with decreased psychosocial scores.

11. Using the results Our HBCV are the poorest of the poor in their areas. They’re unemployed, yet they share their food with their clients. The lack of employment is linked with decreasing psychosocial scores. How can we improve their livelihoods while improving the livelihoods of the clients? Access to SILC, Self-help groups, etc.

12. HBC volunteers & VCT Our HBCV aren’t being tested themselves for HIV, nor are their families. 39% don’t know if someone in their HH is infected, yet they promote VCT to the communities regularly…. Why HBCV are not being tested? Increased training to HBCV on importance of testing, increased referrals, home testing rollout.

13. Psychosocial The caregiver meetings are clearly helping the majority of the HBCV. The HBCV who attend these meetings regularly have reported less depression, anxiety and stress. Intervention: Replicated the meetings and increased frequency of meetings.

14. Conclusions Retention appears to be strong, with dedicated HBCV. In fact, there’s a significant relationship between time already spent as an HBCV and time planned to remain an HBCV. However, the data clearly demonstrates that support for HBCV is necessary. The results presented here can in no way be generalized to HBCV as a population, as our sample was relatively small and only included HBCV from four Dioceses in Zambia. However, this work does demonstrate that HBCV also need specific support. So many HIV programs rely on the work of the volunteers that many of our programs would crumble without their continued vital effort and contribution. Special focus should be paid to the stress that is inherent with volunteering and caregiving with often terminal clients.

15. Next Steps Repeat the survey to the volunteers again over the coming years to make additional corrections as needed. Share these results with others who are implementing HBC programming.

16. Thank you!