Barriers and facilitators to providing end-of-life care to people with intellectual disabilities in the home setting: a qualitative study of bereaved caregivers in Ireland

Objectives To understand the barriers associated with providing end-of-life care to people with intellectual disabilities in the setting they consider to be ‘home’ and identify the enabling factors that support remaining at home for care. Methods Semistructured telephone interviews of bereaved caregivers of people with intellectual disabilities were analysed. The decedents had participated in the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing and had lived in a variety of residence types throughout Ireland. The 30 respondents consisted of seven family members and 23 intellectual disability service staff members. Data were analysed using a theoretical framework which outlined the key factors for quality end-of-life care for people with intellectual disabilities. New codes were also generated using data-driven thematic analysis. Results Ten of the 30 decedents remained in their long-term home for end-of-life care. Challenges were particularly evident in community-based settings. Lack of appropriately trained caregivers, suitable equipment and accommodation were key barriers identified that compromised the ability to deliver care. Where these factors were available, they served as facilitators. Having an involved network, where committed caregivers collaborated to ensure the needs of the person were met, also facilitated the person to remain at home. Conclusions The obligation to support an ageing population with increasing end-of-life care needs must be acknowledged. Anticipation of a person’s need for end-of-life care is important. This ensures that appropriate measures are identified and implemented in a timely manner to facilitate the person remaining in their long-term home, should this be their wish.