Name of research project

Caring beyond COVID-19: IdeNtifying prioriTiEs foR FAmily CarErs through a Participatory Process (Interface).

Brief overview of the project

Family carers provide a vital, yet often invisible role in our society and healthcare system, the COVID-19 pandemic increased the burden for many carers by imposing further restrictions on already limited resources. We set about establishing research priorities for carers to help increase awareness of the community supports needed and help shape reform. As part of the interface project, a Multi-Stakeholder Advisory Committee (MSAC) was established in order to identify gaps in the current literature and to prioritise research questions for Family Carers Ireland.

Description of Public and Patient Involvement (PPI) in this project  

The MSAC which consisted of 13 members was instrumental in developing and refining the priority research questions. Members of this group included carers, caring organisation representatives and health services staff. The personal stories and accounts from members reminded researchers of the perspectives needed to give meaning and understanding to the research priority questions. Through a series of online meetings and workshops, we arrived at a list of research questions for, and about, family carers in a post pandemic context.

The project was supported by Katherine Cowan, an independent consultant who brought extensive experience in facilitation of PPI groups and the delivery of priority setting processes (including the James Lind Alliance method) that enabled people who use health and social care services, and practitioners, to influence the research agenda.

Who is/was involved?

Family carers with a variety of different caring responsibilities provided significant contributions to developing of the research questions and help influenced the language used within each question. The wealth of experience that came from family carers and the participatory process enabled different perspectives to be heard and understood with the end result of them being translated into an indicative list for prioritisation.

Challenges and/or solutions

This project was run over the summer months, which was challenging at times to find a date and time that all members were available for meeting. Nonetheless, the online platform facilitated meetings as individuals were able to dial in from their homes.

What difference did public involvement make?

As one of our PPI members remarked that the experience allowed personal stories and moments of raw vulnerability stand out. This member was grateful for the honesty of the group and equally thankful for having had the opportunity to be heard and feel less alone. While the circumstances of family carers vary, the common threads amongst PPI members provided comfort and brought them closer together.

What would you advise researchers about involvement?

If the opportunity is available to bring members together at certain junctures this would be helpful. The online platform can hinder other peer support mechanisms that are often evident within face to face support groups. The public health restrictions limited our group meeting face to face due to room capacity limitations and fluctuation in community virus levels.

Contact information and related links

This project was led by Dr Irene Hartigan and members of the research team at UCC included Olivia Rachel Donegan, Graduate Medical Students, UCC, Dr Ruth Hally Civic Engagement Office UCC, Dr Nicola Cornally Senior Lecturer School of Nursing and Midwifery, UCC, Dr Serena FitzGerald Lecturer School of Nursing and Midwifery, UCC, Dr Caroline Dalton O’Connor Lecturer School of Nursing and Midwifery, UCC.

You can read more about the project here and here.