Surveying community nursing support for persons with an intellectual disability and palliative care needs

Abstract

Accessible summary People with intellectual disability live within their community and will require services to support them at end of life. Often people with intellectual disability are denied access to essential services. This paper identifies the experiences of community nurses caring for persons with an intellectual disability and palliative/end‐of‐life care needs. SummaryPalliative care services have developed over the years to support all persons with life‐limiting conditions. Moreover, services for people with an intellectual disability have moved from the traditional institutional setting to supporting people with an intellectual disability to live in their own community and family home. The expansion of palliative care services and integration of people with intellectual disability into their communities has resulted in an increased demand and greater diversity in the population groups accessing palliative care services. This study aims to describe the provision of community nursing support for persons with an intellectual disability and palliative/end‐of‐life care needs from the perspective of community nurses. A quantitative descriptive cross‐sectional survey was employed. On receipt of ethical approval, data were collected through self‐reporting questionnaires and descriptive analysis was conducted to describe frequencies and to identify patterns of the respondents using spss version 18. Only 85 people with an intellectual disability were referred to palliative/end‐of‐life care services over a 3‐year period. Those delivering care expressed challenges including, understanding communication styles, late referrals, lack of time, knowledge and skills. Highlighted within the study were the benefits of liaison between family and professional and nonprofessional carers. Findings provide insight into the importance of teamwork, advance planning, knowing the person and best practice in providing palliative/end‐of‐life care for people with intellectual disability through collaboration.