Improving end-of-life care experiences… & bereavement outcomes for patients with advanced disease

Categories: Care, Community Engagement, Education, and Featured.

Improving end of life care experiences, quality of death and dying, grief and bereavement outcomes for patients living with advanced disease and their families using a health-systems strengthening approach

The high burden of grief and bereavement in Sub-Saharan Africa is largely attributable to HIV, cancer, and other non-communicable diseases. However, despite this huge burden, interventions to improve grief and bereavement are rare. Given high rates of mortality in the context of weak health systems, community lay members are well placed to provide peer bereavement support.  More so, on the side of patients living with advanced disease and their families, it is important to improve their end-of-life experiences by promoting patient and family-led person-centred models of care to improve the quality of death and dying.

As a response to the above mentioned issues, African Palliative Care Association (APCA) is implementing a 3-year programme entitled “Improving end of life care experiences, quality of death and dying, grief and bereavement outcomes for patients living with advanced disease and their families using a health-systems strengthening approach”. The programme is receiving support from the Irish Hospice Foundation, and is being implemented in partnership with Kitovu Mobile Hospice, Rays of Hope Hospice Jinja and the Global Institute of Psychosocial, Palliative and End-of-Life Care (GIPPEC), between January 2023 and December 2025 in Buddu and Busoga regions of Uganda.

The overall goal of the programme is to improve end-of-life care experiences, grief and bereavement outcomes for patients living with advanced disease and their families. It  has two components; a) the quality of death and dying, and b)  grief and bereavement, and will be working towards the following expected outcomes in the target regions:

  • Communities empowered to support bereaved community members and to respond to emerging grief and bereavement needs
  • Palliative care services have core teams to steer grief and bereavement service development
  • Communities in Buddu region have core teams of community-based grief and bereavement therapists to steer grief and bereavement service development and to raise awareness about grief and bereavement.
  • Bereavement families supported to improve their grief and bereavement outcomes.
  • Communityy responses in grief and bereavement therapy and support strengthened.
  • Health systems strengthened to improve end of life experiences, quality of death and dying for patients with advanced disease

The programme will use two models that are known to be impactful in the programme areas of focus, i.e., (i) the 9-cell model for grief and bereavement and (ii) CALM therapy for the quality of death and dying.

In keeping with its role as the regional hub for palliative care in Africa, APCA will include evaluations for knowledge generation and sharing, develop a manual on best practices for community-led and facility-based grief and bereavement services, as well as a manual on best practices for improving end-of-life care experiences for patients with advanced disease using a health system strengthening approach. APCA will train and mentor palliative care champions and National Associations on how to implement the best practices in their country contexts.

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