Publicatie

Problems and training needs in end of life care for people with intellectual disabilities.

Veer, A.J.E. de, Bekkema, N., Hertogh, C.M.P.M., Francke, A.L. Problems and training needs in end of life care for people with intellectual disabilities. Palliative Medicine: 2012, 26(4) 529. Abstract. 7th World Research Congress of the European Association for Palliative Care (EAPC), 7-9 juni 2012, Trondheim.
Aims: In a previous Dutch study it was found that professionals caring for people with intellectual disabilities were experiencing deficits in their knowledge and skills regarding end- of-life care. The aim of this study was to identify changes between 2005 and 2011 in professionals’ views on the state-of-the art of the end-of- life care for people with intellectual disabilities. Methods: A pre-structured questionnaire was sent to managers of non-medical staff and doctors in organisations for people with an intellectual disability in the Netherlands. The questionnaire was completed by 72 managers (response rate 53%) and 90 doctors (response rate 40%). Results: In 2011 there are more tools available that professionals can use when giving end-of-life care and more volunteers are involved in end-of- life care. The perceived quality of care remains the same, but professionals in 2011 are less satisfied than in 2005 about the involvement of patients in their own care processes.Despite the increase of tools, there are no major shifts in the perceived quality of the care. The main bottlenecks are timely identification and monitoring of pain and other symptoms, too much turbulence in the living environment, insufficient time for the client, and limited opportunities to involve volunteers.The training needs have not much changed either. The greatest need is for training in assessment and management of pain and on how quality of end-of- life care can be assessed. There is also a need for guidelines on dealing with illness and death in different cultures. Finally one would like more tools for assessing symptoms such as anxiety, fatigue, etc. in the final phase. Conclusion: Despite many initiatives to support and improve end-of-life care for people with intellectual disabilities professionals still notice problems and training needs. The results also suggest that professionals are increasingly aware of what is needed for good end-of-life care. (aut. ref.)