When the project began, health services in Goromonzi were limited; they were inaccessible, under-resourced and under-stocked. Many people living with HIV and other life-limiting illnesses lived far from health facilities, as did their carers, so they often had to manage with very little professional support. As a result they commonly experienced pain and isolation. A large number of children were caring for adults and siblings and frequently had to manage alone with feelings of grief and bereavement. They fought to balance their domestic duties with school; often missing out on their education and becoming increasingly vulnerable.
Over the three years of the project, the Island Hospice & Healthcare team strove to change this and worked hard to mitigate the impacts of HIV in this economically deprived rural area. The idea behind the project was to support and build on the incredible resilience evident in the communities of Goromonzi, by enhancing collaborations between different NGO, community and government partners, and building the capacity to provide palliative care.
The project has now closed and an external evaluation indicates that it’s resulted in a shift in the attitudes and practices of the community, carers and care providers (including professional health staff) in the acceptance and support given to people living with HIV and to orphans and vulnerable children.
Volunteers have been taught the knowledge and skills to deliver home-based palliative care within the communities. They have been linked with health centres equipped with trained staff and adequate supplies, including essential pain relieving medications. People in Goromonzi have an opportunity to join Internal Savings and Lending groups, and child and young carers have been supported by familiar community members (the volunteers), teachers and NGO staff to overcome the huge pressures of looking after dependents, managing a household and going to school, as well as working through feelings of grief.
Evaluation and impact
The project has improved the levels of care in the community and strengthened links with the palliative care sector. Specifically the evaluation notes that:
- Over 1000 PLWHIV and 6000 family members were reached with palliative care and support during the three years. People living with HIV experienced an increase in feelings of wellbeing.
- Facility and community-based care providers have increased knowledge, confidence and skills. A broader mix of interventions/processes during care provision, high levels of confidence exhibited by care workers, and the structured delivery process reflect strong improvements in the quality of care.
- Young carers have showed increased coping ability – children were more confident in sharing their emotions and had increased willingness to confront their situations. Focus group discussions with the children reported reduced feelings of isolation and stigma. They could identify referral networks to which they could turn to for help – the community volunteers being key contacts.
- Morphine became available from Makumbe hospital for the first time, but there is concern about availability and accessibility of medications for pain, particularly when people were unable to travel the long distances to Island Hospice (where the more complex cases were referred). Without integration of palliative care into the national health system, projects like this are unsustainable.
Critically, the evaluation notes the unique contribution of the palliative care approach on the success of this project. It states that “The dimensions of palliative care that emphasise family involvement, communication skills and follow-up bereavement care… in addition to routine pain and symptom management are noted to be unique elements that made the community care package attractive”.
Island Hospice & Healthcare are now using the evaluation from the COLLABORATE project to advocate for inclusion of palliative care in the health system as per the WHA resolution of 2014 (Strengthening of palliative care as a component of comprehensive care throughout the life course).
Discussions are now underway to determine what integration should look like, with the Ministry of Health, HOSPAZ and independent palliative care experts. The Ministry of Health is reportedly committed to making this happen. Lessons learned from the project will be available soon.
We are grateful to the Big Lottery Fund for funding this project and are so proud to have partnered with Island Hospice & Healthcare. We look forward to future replication and development of the COLLABORATE model.
This article originally appeared on the UK edition of ehospice.
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