How do Heart Failure Caregivers gain information and support for their role? The contribution of specialist nurses.

Abstract

Abstract Funding Acknowledgements Type of funding sources: None. Background Current evidence shows caregivers of people with Heart Failure are susceptible to a deterioration of their own health as a consequence of carrying a high degree of burden as a result of this role (McIlfatrick et al 2018, McHorney et al 2021). This level of burden appears to be a consequence of a limited understanding of heart failure symptoms and complex medication management, further perpetuated by being unsure of where to ask for help (Boyd et al 2004, Exley et al 2005). The empirical evidence further suggests caregivers of people with Heart Failure experience a reduced quality of life, lack understanding of the Heart Failure trajectory (Etemadifar et al 2015, Fitzsimmons et al 2019), do not have adequate support networks (Shahrbabaki et al 2016) and require help and guidance with the care needs of the person with Heart Failure (Tavakoli et al 2018, Hayashi et al 2021). Purpose The aim of this study was to explore the support and information needs of caregivers of people with Heart Failure, in particular to explore the support provided by specialist Heart Failure Nurses. Methods A qualitative interview study was designed following the approach detailed by Brinkmann and Kvale (2015). A thematic analysis of the transcripts was conducted using the Braun and Clark’s Thematic Analysis approach (Braun and Clarke 2012). Coding of the interview transcripts was undertaken by two researchers (HW and SS), agreement reached and subsequent discussion and refinement by the Public/Patient Involvement (PPI) group of two heart failure nurse specialists and an ex-caregiver. Results Thematic analysis identified 4 themes: Taking on the role of caregiver; Getting to grips with being a caregiver; Impact on own health and wellbeing; Need for information and Support. This presentation will focus on the data that was a thread through each of the themes relating to the role of the Heart Failure Specialist Nurse in providing information and support. Whilst the specialist nurse was universally seen as informative and someone who actually valued caregiver input, consultants and general practitioners lacked consistency and failed to include the caregiver. Conclusions Caregivers in this study felt they were lacking information and knowledge about Heart Failure and consequently felt ill-equipped to deliver and manage care. Needs identified within our study reflect earlier work demonstrating the key role played by specialist nurses in supporting and informing caregivers of people with Heart Failure.