Family Carer Experiences of Inclusion and Exclusion
On 22 September, Care Alliance Ireland and ISS21 hosted the third and final in a series of online round table events as part of the CARERENGAGE project. This series of workshops was designed to address the project goals of centering and embedding family carers in the co-production of carer research, supports and policy.
Family carers have varied experiences of both inclusion and exclusion in research on caring. In this session Helena McQuaid (family carer & chair of the Dementia Carers Campaign Network) and Fiona Masterson (former family carer & member of the Family Carers Ireland PPI Panel) talked about their involvement in the research process. For Helena and her husband the experience had been entirely positive and had 'opened up new doors' at a time when they were at risk of isolation. During the Covid 19 pandemic they had become even more involved in research, advocacy and networking as they connected (online) with researchers and stakeholders working in the fields of dementia and caring both in Ireland and internationally.
Fiona Masterson reported that her experiences were largely positive, but also noted that there were variations in the degree to which carers were included in the research process. She highlighted the importance of including carers in the design and conceptualisation stage, to ensure that their concerns were adequately reflected in the research. She also considered how best to include carers in research and the skills needed on the part of the researcher, particularly emotional intelligence and empathy.
Zoe Hughes (Care Alliance Ireland) opened the event with a summary of the work from the previous two events and reflections on what had been learned. Concluding comments on the next steps were provided by Dr Carol Kelleher, PI of the CARERENGAGE Project and co-convenor of the ISS21 CARE21 Research Cluster.