CARERENGAGE

Centering and Embedding Family Carers in the Co-Production of Carer Research, Supports and Policy

Project Aims

Underpinned by an engaged research approach, CARERENGAGE has an overall aim to coproduce in-depth, practically-oriented knowledge and evidence-based research impacting family carers in Ireland. Specifically, this will involve Institute of Social Science in the 21^st Century UCC (ISS21) and Care Alliance Ireland (CAI) facilitating and delivering three national workshops addressing three key research and policy areas identified by CAI, in consultation with its 85 CVO members.

This aim is supported by the following action-specific objectives:

1: Develop a CVO-academic-policy-citizen-carer-service provider knowledge network to support family carers’ capacity to make informed decisions and achieve policy goals

2 Co-facilitate three national workshops to encourage knowledge exchange and coproduction dialogue between network members to bridge the gap between research, policy, practice and family carer requirements.

3 Co-develop, communicate and translate policy, academic, CVO provider, recommendations to maximise the value and impact of family carer research.

Implementation Plan

Co-facilitated by ISS21 and CAI, the project plan prioritises the delivery of three roundtables, briefing and position papers on priority social policy issues impacting carer well-being in Ireland. The roundtables are as follows:

Patient & Public Involvement (PPI) in Research with a Focus on Family Caring. 13th October 2020

The roundtable featured three presentations, followed by a lively and engaging panel and group discussions between family carers, researchers, CVOs and health and social care providers who looked at how to implement best practice PPI with regard to family carer research.

Presentations:

Dr. Jon Salsberg (University of Limerick): 'Meaningfully Involving Patients, Carers and other Members of the Public in Health Research'. To access the presentation, please click here

Dr. Nikki Dunne & Jo Bergin (Family Carers Ireland): 'A reflection on the development of the Family Carers Research Advisory Network'. Please click here

Aisling Harmon (PPI participant expert and family carer): 'The Family Carer Perspective'.

For details on workshop interactive sessions please click on the following link: CARERENGAGE PPI Roundtable 1

Evaluating the National Carers Strategy - Future Directions, 23rd March 2021

The results of a research review into the views of family carers, service providers, researchers and policy makers on the 42 actions within the current National Carers Strategy (2012) were presented and discussed at this workshop by Dr. Maria Pierce, Independent Researcher. For a recording of the presentation, click here. To view the presentation slides, click on the following link: CarerEngage Presentation of Findings.

A panel of external expert stakeholders then responded to the report. The panel, chaired by Zoe Hughes, Care Alliance Ireland, comprised:

Susan Scally, Principal Officer, Social Care Performance & Integration, Department of Health

Emily Holzhausen OBE, Director of Policy & Public Affairs, Carers UK

Clare Duffy, Policy & Public Affairs Manager, Family Carers Ireland

This was followed by interactive discussions in small breakout rooms amongst the forty participants who attended. Following this event, the discussions at the workshop were incorporated into a final review report, which is available at: A Review of the National Carers’ Strategy (2012)

Family Carer Experiences of Inclusion and Exclusion, 22 September 2021, 2-3pm (via zoom).

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.

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. For further details on this event please click here

Publications

Pierce, M., Hughes, Z., O’ Sullivan, L. & Kelleher, C. (2021) A Review of The National Carers’ Strategy (2012): How relevant are the actions in 2021 and for the future? Dublin: Care Alliance Ireland and Institute of Social Science in the 21st Century, University College Cork. Available here

Project Funding & Duration

Funded by the Irish Research Council, New Foundations Scheme, from July 2020 – October 2021

Project Team

Dr Carol Kelleher, ISS21, Email carol.kelleher@ucc.ie

Zoe Hughes, CAI, Email zoe@carealliance.ie

Liam O' Sullivan, CAI Email ndo@carealliance.ie

Carers

Institute for Social Science in the 21st Century (ISS21)