Training needs of nurses and social workers in the end-of-life care for people with intellectual disabilities: a national survey

Abstract

Background: Nurses and social workers caring for people with intellectual disabilities are increasingly confronted with clients in need of end-of-life care. Previous studies, however, suggest that professionals in intellectual disability care services lack knowledge and experience concerning end-of-life care. Moreover, the proportion of nurses within the staff of intellectual disability services has declined in recent years, while the proportion of social workers has increased, which may have consequences for the quality of end-of-life care.

Objectives: To gain insight into the quality of end-of-life care, past vocational training, training needs and expert consultation opportunities of nurses and social workers working in intellectual disability care services.

Design: Survey questionnaire study conducted in the Netherlands.

Settings: Intellectual disability care services.

Participants: The study sample was recruited from an existing nationally representative research panel of care professionals. In 2011, all 181 nurses and social workers in the research panel who worked in intellectual disability care services were sent our survey questionnaire.

Methods: Postal survey addressing education, views and needs regarding end-of-life care.

Results: The response was 71.8%. Respondents positively evaluated the quality of end-of-life care. However, most respondents felt inadequately trained in end-of-life care issues. Nurses had received more training in end-of-life care and had fewer training needs than social workers. Respondents wished for additional training, especially in supporting clients in dealing with the impending death and farewell process. Half of the respondents were unaware of the availability of external consultation facilities.

Conclusions: This study shows that although nurses and social workers positively appraise the quality of end-of-life care for people with intellectual disabilities, the majority feel inadequately trained to provide good end-of-life care. As the number of people with intellectual disability in need of end-of-life care grows, organizations need to offer additional relevant training and must give information about the availability of external expert consultation for nurses and social workers.

Keywords: Education; End-of-life care; Intellectual disability; Nursing; Palliative care; Social work.