ABSTRACT
Objectives: To present an exploration of the experiences of using focus group methodology to discuss end of life family conversations in families of African and Caribbean heritage;And to explore the change of dynamics of these focus group discussions when COVID 19 required a change from in person discussion to synchronous online discussions. Background: Individual interviews are widely used in qualitative research when exploring sensitive topics such as discussions with people who are dying or around the dying of others. Previous studies have explored many issues that arise in carrying out palliative care research. They have focused on ethical appropriateness, benefits and burdens and consent. When exploring the use of focus group methodology in sensitive research, issues such as confidentiality, anonymity, power imbalances between participants and risk of harm have been concerns. With the rise of participatory forms of research entering the palliative care arena, interest has grown and confidence has been built in utilising group discussions to generate a greater flow of ideas. Method: Process and outcome analysis of five focus groups of people from African and Caribbean heritage discussing end of life family conversations. Two focus groups were undertaken in person and three were conducted online. Results: The process analysis revealed a dynamic of power rebalancing. The groups had more participants than facilitators and the impact of this was noticeable, particularly in the group of older people where participants supported each other to focus on themes that were significant to them. The presence of two group facilitators, a common feature of focus groups provided insightful opportunities for reflexivity. Moving from in person groups to online groups altered the ratio of comments between facilitators and individual participants than between participants. Outcome analysis revealed that fewer themes were generated in the online groups.