title: The challenges of providing palliative care for people with intellectual disabilities: a literature review.
abstract: People with intellectual disabilities are often marginalised from mainstream health-care services because of the complexities of their disability. They are under-referred to specialist palliative care owing to a limited understanding of its role and little collaborative working. Furthermore, professionals caring for people with intellectual disabilities and palliative care services often lack knowledge about and confidence in their ability to meet the needs of people with an intellectual disability who require palliative care. This literature review explores the challenges of providing palliative care for people with intellectual disability. It highlights that training requirements need to be effectively identified, referrals between professional groups made, and the perspectives of patients understood to overcome the marginalisation of people with intellectual disability. There is a need for ongoing staff development focusing on staff confidence, collaborative working between professionals, and the empowerment of people with intellectual disability to be involved in decisions about their end-of-life care. Further research is needed to examine the most effective way of capturing the perspectives of those with intellectual disability and of enabling people with intellectual disability to access and engage with health surveillance, cancer screening, and palliative care services.
authors.affiliation: Hospice Community Nurse Specialist, St Peter's Hospice, Charlton Road, Bristol, BS10 6NL, UK.
authors.forename: Susie
authors.initials: S
authors.lastname: Dunkley
authors.forename: Rachel
authors.initials: R
authors.lastname: Sales
mesh_terms: D006801:Humans; D008607:Intellectual Disability / Q000628:therapy*; D010166:Palliative Care; D006113:United Kingdom
keywords: Access; End-of-life care; Equity; Intellectual disability; Intellectual impairment; Learning disability; Palliative care