School of Nursing and Midwifery Scholarly Impact Report 2021

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CATHERINE MCAULEY SCHOOL OF NURSING AND MIDWIFERY, UCC

HEALTHCARE EXPERIENCE, ENGAGEMENT AND REFORM

Identifying priorities for Family Carers through a Participatory Process

The agreed list of priorities will be published in November and presented at Family Carers Ireland online research conference, on the 24th of November, showcasing projects unique to Family Carers Ireland as part of the Irish Research Council New Foundations 2021 Awards. We would like to thank key organisations, such as Eurocarers and Health Research Charities Ireland for their involvement as well as PPI Ignite Network @UCC for advising on how to include the voices of carers. 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. Members of the research team at UCC include Olivia Rachel Donegan, Graduate Medical Student, 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. Symptom management at the end of life for people with intellectual disabilities Peoplewith intellectual disabilities are living longerwhileexperiencing significant health conditions often resulting in a prolonged period of dying. Symptom management may be complex at end of life and the unique needs of each individual necessitates a person- centred approach. This article discusses several symptoms at end of life including pain, anxiety, agitation, breathlessness and epilepsy, as well as their management strategies, focusing on the last days of life. Healthcare professionals may support people with intellectual disabilities at end of life in a variety of hospital or community settings. Therefore, they need to have the knowledge and skills to provide evidence-based care safely and effectively.

Contemporary approaches to ensuring that peoplewith an intellectual disability can self-determine the management of their symptoms and that their circle of support is involved in a meaningful way will be explored, including advanced care planning and shared decision- making. This article presents a biopsychological perspective to end of life care and symptom management, which speaks to a holistic and respectful approach. Lead and Team Members: Caroline Egan, lecturer, BSc Nursing Intellectual Disability, UCC Aisling McDonald, Staff nurse, residential Services, COPE Foundation, Cork, Ireland; Caroline Dalton, lecturer, BSc Nursing Intellectual Disability, UCC Selected Reference: Egan C, McDonald A, Dalton C (2021) Symptom management at the end of life for people with intellectual disabilities. Learning Disability Practice. doi: 10.7748/ldp. 2021.e2167

The COVID-19 pandemic highlighted existing pressures and created new ones for family carers. In April, the Interface project set about identifying research priorities for Family Carers Ireland. This project had several data sources, such as evidence-based review of the literature, anonymised audit data, FCI webinars and focus groups discussions, that explored concerns and uncertainties around providing care in a global pandemic. The interface project led by Dr Irene Hartigan from UCC’s School of Nursing and Midwifery, in collaboration with Dr Nikki Dunne, Family Carers Ireland (FCI) and Dr Katherine Cowan, Independent Facilitator, worked in partnership with a Multi-Stakeholder Advisory Committee. (MSAC) to identify gaps in the current literature, and to prioritise research questions for FCI. The MSAC which consisted of 13 members were 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 personhood and unique experience of each member. This interconnection influenced our shared understanding and is the perspective 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 16 research questions for, and about, family carers in a post pandemic context. The top 10 priorities were identified through a ranking exercise, with each member identifying their top and bottom three researchable questions prior to a facilitated group discussion surrounding prioritisation. Key themes within these priorities relate to: • Valuing carers in terms of their economic and societal contribution • Economic impact and the financial strain of caregiving • Provision and access to support services and infrastructure in Ireland

21 May 2021 // Paper published by team at UCC’s School of Nursing and Midwifery

Highlights

• People with intellectual disabilities have unique health needs at the end of life, for example atypical presentations of pain or uncontrolled epilepsy, as well as individualised communication needs. • Symptoms, such as pain, anxiety, epilepsy and breathlessness, will require person centered assessment and management strategies.