Factors Influencing Palliative and End-of-Life Care for Adults with Intellectual Disabilities: A Scoping Review of Health and Care Workers’ Experiences

Abstract

In developed countries, there has been an increase in the longevity of adults with intellectual disabilities. In the later stages of their lives, people with intellectual disability have specific needs in terms of palliative and end-of-life care that need to be better understood in order to offer appropriate care. This scoping review aimed to identify the main factors influencing the provision of palliative and end-of-life care from the perspective of health and care workers involved with adults with an intellectual disability at the end of life. Seven databases were systematically searched for relevant articles published between 2002 and 2022. NVivo qualitative research analysis software was used to conduct a thematic analysis of the 50 included studies. Three main factors were identified: the location of care and death, the involvement of the person with intellectual disability, and collaborative practices.

Keywords:

• Care providers
• intellectual disabilities
• palliative and end-of-life care

Additional information

Funding

This article is developed as part of the doctoral dissertation of the first author. This work was supported by the Joseph-Armand Bombardier Canada Graduate Scholarships; and l’Institut sur le vieillissement et la participation sociale des aînés de l’Université Laval (IVPSA) grant to support the dissemination of research results.