A community-led group learning intervention for grief & bereavement in rural Uganda

Community members in Uganda’s rural communities face multiple losses but have limited support available within their communities to help them process their emotions and cope with such losses to prevent prolonged grief disorders and related depression. There is a need to increase community awareness of grief and bereavement (G&B) to enhance the support that grieving community members receive in order to minimize post-loss psychopathology.

To bring community led grief and bereavement support and management, we hypothesized that using a community-led learning group discussion approach with bereaved community volunteers would be an effective way to educate community members about G&B and increase their grief literacy and grief advocacy skills. This was done using the 9-cell grief and bereavement awareness tool which has the potential to increase G&B awareness and grief literacy.

A longitudinal study was conducted in 3 Ugandan districts: Kyotera, Masaka and Lwengo. Three grief therapists trained 6 hospice and palliative care providers to lead community-level training, capacity building and service integration within each hospice over a period of five months. We identified literate adult community members with lived experiences of G&B willing to act as community G&B volunteers, enrolling 10 in each community so that we could develop community based services.

We utilised a group community-led training approach to train the volunteers on G&B using the 9-cell tool covering;

• common grief reactions,
• G&B perspectives,
• distinguishing typical from debilitating grief reactions, and
• how peer facilitators can support grief.

Three training sessions were held per group, each lasting 6 hours. Participants shared their own loss stories, while trained palliative care teams listened, corrected misinformation, negative gender and social norms, and normalized G&B’s normal aspects. The community volunteers also provided death, G&B education and awareness sessions with at least 10 members in their social network and held 5 public awareness sessions. Data on awareness sessions were recorded in diaries

Over the 2-year period, a total of 90 community lay G&B support personnel were recruited with 10 group discussions and 3 mentorship sessions held. During the discussions, group participants shared negative experiences during their losses. For example, negative gender and social norms like “men should not cry in public” and uncompassionate communication from communities. Following the sharing of stories, many volunteers reported improvements in psychological well-being and better social support. They also reported improved skills in grief advocacy and public engagement within and out of their social networks reaching over 100 people.

Community-led learning using people with lived experience can be used as a public health intervention to increase awareness around G&B. Those affected can work in groups to address their G&B needs through sharing and learning with support and mentorship of a trained palliative care provider.

Acknowledgements: APCA thanks the Irish Hospice Foundation for funding this work, Kitovu Mobile Hospice, the community lay grief counselors and Jenny Hunt to supporting this work.