DOI: 10.1111/jar.13186 ISSN: 1360-2322

Perceived barriers and facilitators to good end of life care: Focusing on people with intellectual disabilities

Marissa A Diaz, Fionn Crombie Angus, Jerome E Bickenbach
  • Developmental and Educational Psychology
  • Education



People with intellectual disabilities are often left out of research on important topics. This exploratory study investigated their views on barriers and facilitators to accessing care at end of life, both at home and in a hospice setting.


This qualitative study used reflexive thematic analysis. Two focus groups were held via Zoom with a total of four participants.


Three themes were produced: Unsettling Transitions, Maintaining Familiarity, and Respecting People's Wishes. Keeping things as unchanged as possible at end of life was highlighted as an ideal. Respecting people's wishes and education were highlighted as facilitators to good end of life care.


The themes identified in this study highlight the fears and wishes of this population with regards to receiving quality end of life care. Training for staff and families, as well as advanced care planning, could focus on enhancing facilitators and decreasing barriers for this population.

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