Intellectual disability services: a need for extra training in end-of-life care

Although professionals caring for people with intellectual disabilities feel that their team offers good end-of-life care, the majority feels they are not adequately equipped to provide such care. This can be concluded from an article by researchers from the Netherlands Institute for Health Services Research (NIVEL) and VU Medical Centre (VUmc) published in the scientific journal Nurse Education Today.

An increasingly aging population also means that an increasing number of people with intellectual disabilities need end-of-life care. Many professionals working in intellectual disability services are social workers, with a proportionately smaller number of nurses. Compared with social workers, nurses are better equipped to provide physical and medical care. The researchers conducted a survey among professionals of the national Nursing Staff Panel on their experiences with end-of-life care.
Insufficient training
Professionals caring for people with intellectual disabilities feel that their team offers good end-of-life care. However, only 15 percent feels they have had enough training to be able to provide good end-of-life care. NIVEL researcher Nienke Bekkema: “Care professionals indicated that they would especially like additional training in how to support their clients in dealing with their impending death. Intellectual disability services could offer training programmes for this. The fact that even professionals with a nursing background did not think they were trained enough indicates the importance of additional training.”
External expertise
In addition, only half of the professionals working in intellectual disability services were aware it is possible to consult outside experts for advice on end-of-life care. According to Bekkema, “This is surprising, because advice services like palliative care consultation teams are in principle available to all health care staff. End-of-life care for people with intellectual disabilities could be improved through better cooperation between intellectual disability services and organisations that are specialised in end-of-life care. To start with, organisations could give their staff members more information about the possibility of consulting experts.”
The study was conducted among 181 professionals of the NIVEL Nursing Staff Panel who are trained as social workers or nurses and who work in intellectual disability services. This Panel is made up of more than 1,650 health care professionals working in hospitals, nursing homes and homes for the elderly, home health care services, mental health care services, and intellectual disability services. The Panel is coordinated by NIVEL, with financial support from the Dutch Ministry of Health, Welfare, and Sport.
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