Featured Story

2021; Volume 22, No 10, October
Eve Namisango with a male patient and a public engagement and involvement group.
The photo was taken at the first public engagement in palliative care workshop in Uganda. Photo courtesy of the African Palliative Care Association.

The Art of Patient Public Engagement in Palliative Care

By Dr. Eve Namisango
IAHPC Board Member; and
Research Manager, African Palliative Care Association

Patient and public involvement and engagement (PPIE) are pivotal to maximize the impact of research on clinical care. Despite this need, there a lack of evidence on best practices for making this realistic in Africa.

In the Words of Participants

“Patients sometimes feel used and that researchers merely are making money off of them—they need to explain better what they are discussing.”

— Male participant 04

“PPI can provide opportunity for engagement and has benefited some of the patients given the information gained, feeling of importance, peace of mind...”

— Male participant 07

“Patients have long been forgotten; people sit and make decisions that affect us without us. This is the beginning of a more positive collaboration. We should have more of such engagements.”

— Female participant 01

“Counseling patients and proper explanation of research studies will make patients more willing to get involved. This is because some of them feel abandoned.”

— Female participant 02

“We can consent patients and also review consent forms, because we know what it feels like to be a patient and a participant. Even fellow patients would trust us more.”

— Male participant 05

To foster the establishment of best practices for engaging patients and their families in a PPIE initiative, the African Palliative Care Association partnered with the Uganda Cancer Society. Together, they organized two focus group discussions to which cancer patients were invited. These workshops, held at Mulago Guest House in Uganda in March this year, centered on the first engagement of health care providers with cancer patients.

The focus groups were stratified by sex (male and female). We identified adult cancer patients through the Uganda Cancer Institute based in Kampala, purposively selecting those who had lived with cancer for at least three months. We recruited adult cancer patients who were actively receiving care and willing to participate in a focus group discussion.

The topics discussed

In all, 18 adult cancer patients participated in the focus groups: nine men and nine women. I led the focus group discussions, which were audio recorded, transcribed verbatim, and analyzed thematically. The focus group topic guide included:

Ways that patients want to participate in research

Our findings indicated that PPIE is a platform that empowers patients to engage in research. Patients wished to be involved in the following areas:

Cancer patients expressed a preference for a quarterly schedule of workshops and panel discussions, as opposed to one-on-one meetings. The analysis revealed that training needs to focus on areas such as capacity building and empowerment for the cancer patients whose role is to participate in the PPIE.

To learn more about African Palliative Care Association,visit the IAHPC Global Directory of Palliative Care Institutions and Organizations.

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