Person-centred approach for people with learning disabilities in palliative care: the challenges

Abstract

Background People with a learning disability (PWLD) are living longer with a greater need for palliative care. Research has identified that people with a learning disability experience challenges when accessing palliative care with concerns that person-centred care is not being achieved.

Aim The overall aim of this study is to present a meta-synthesis of qualitative studies. Focusing on the challenges of achieving person-centred care for PWLD and palliative care needs, to gain a deeper understanding of the challenges they experience.

Method A qualitative meta-synthesis literature review using a seven-phased model by Noblit and Hare was undertaken. An online literature search was conducted between 8 July 2024 and 31 July 2024 across four databases: SAGE publications, PubMed, Wiley Online Library and CINAHL.

Results 10 studies were reviewed with 226 participants ranging from PWLD, support workers, health professionals and family members. Main themes identified were: a deficiency of knowledge, the importance of the environment, challenges in achieving effective communication and advance care planning to achieve better outcomes.

Conclusion This qualitative meta-synthesis identifies the challenges of achieving person-centred care for PWLD and palliative care needs. It draws attention to person-centred theory and how this supports good person-centred care for PWLD. This paper went further to identify how person-centred theory links with the wider context of healthcare practice while exploring recommendations to improve practice and gaps in research.