A Qualitative Exploration of Healthcare Workers' Experiences of End of Life Care for People With an Intellectual Disability.

Abstract

Aim: To explore healthcare workers' experiences of end of life care for people with an intellectual disability.

Design: A descriptive qualitative study.

Method: Semi-structured interviews were conducted with 28 healthcare workers who cared for older people with an intellectual disability at their end of life. Data were analysed using thematic analysis and reported according to the COREQ guidelines.

Results: Three major themes emerged: not joining up the dots, living the life desired in one's last days and dealing with death and beyond.

Conclusion: Gaps emerged in the care of the person with intellectual disability. Pain assessment and pain management were particular challenges. End of life care was not always effectively planned, and earlier intervention, including end of life conversations, were needed. More needs to be done in terms of education for healthcare workers, and especially those in the acute care setting and palliative care services who may be unfamiliar with the needs of this cohort.

Implications for the profession and/or patient care: There is little consensus or understanding about the palliative care needs of those with intellectual disability. There are often specific challenges around providing palliative care particularly in relation to healthcare staffs' knowledge and confidence in understanding palliative care needs of this group and indeed communicating and assessing particular needs. Staff require educational preparation and training in palliative care to address the particular needs of this cohort.

Impact: This study revealed that there are gaps emerging in the care of the person with intellectual disability at the end of life. Pain assessment and pain management are particular challenges that require urgent attention.

Patient or public contribution: There was no patient or publication contribution in this specific study, although IDS-TILDA has a client representative and advisory committee that advise on all aspects of project design and management.