Determining the informational needs of family caregivers of people with learning disabilities who require palliative care: A qualitative study

Background: The population requiring palliative care is increasing and includes people with learning disabilities (LD). International literature reports inadequate support of family caregivers, citing poor provision of information and signposting. A wider scope of informational need is thought to exist for family caregivers of people with LD who require palliative care; however, there is a paucity of research to evidence this. Aim: The aim of this research was to explore the informational needs of family caregivers of people with LD who require palliative care, with logic model development providing a visual representation of the information needs reported and how they can be best addressed. Methods: Semi structured interviews with family caregivers (n=10) & 6 focus groups with multi-disciplinary Health & Social Care Professionals (n=28), across 5 Health & Social Care Trusts and 2 Hospices in Northern Ireland. Data was analysed thematically using Braun & Clarke’s (2006) framework. Application of the experience based co-design (EBCD) approach supported family caregivers to have a voice throughout the study and involved consultations with an expert reference group. Results: Interview Themes: Changing and Diverse nature of Information Need; Consistent Communication & Joint Working; Navigating Care across Health & Social Care Settings and Evolution & Tenets of the Caring Role. Focus group Themes: Interplay of Services across Settings; Information Need at the Interface of Services and Decision-making Dilemmas. Conclusions: Information and signposting to education on a disease, practical support, financial entitlements, or psychosocial support all form a kaleidoscope of varying and individualised information needs which can be present at the interface of palliative care and LD services. A wider scope of informational need exists due to already long care trajectories and issues associated with caring for someone with LD. This study is supported by the research literature in recognising information need as crucial to facilitating support and meeting the individual support needs of caregivers. Implications for practice This study addresses the general paucity of research in respect to family caregivers of people with LD in palliative care. As a result it can be used to influence or guide crucial elements of policy and practice in health and social care. The study adds to existing knowledge and provides an evidence base to inform future priorities in palliative care.