The experience of caring for a dying client with intellectual disabilities. A qualitative study with direct-caregivers


Background: Caregivers experience problems when caring for people with intellectual disabilities who are terminally ill. Aim: The aim of this study is to gain a deeper understanding of the experience of the caregiver when caring for a person with intellectual disabilities who is terminally ill and what influences this experience. Design: A qualitative research was carried out following the principles of Grounded Theory (GT) method, through fifteen interviews with caregivers in a living facility with continuous care. Results: The results show how caregivers strive to create meaningful moments for their client during the last period of his life. Since very few of the clients can clearly express their wishes and feelings, continuous observation is required of the caregivers for the interpretation of small signals of their clients. In that way, the appropriateness of their actions can be made certain. The results show that because of their involvement, caregivers are able to recognize clients’ signals. When a client is dying, the special atmosphere created on the ward contributes to coping with the situation and a positive experience. Conclusion: Direct-caregivers caring for a client with an intellectual disability who is terminally ill, experience an intense period of insecurity and also a special period meaningful when caring a dying client with intellectual disabilities. Their relationship with the client makes them to be more able to strive for client’s comfort. The results also show that some factors such as enough staff, clear and open communication with the physician and support of the manager contribute to the quality of palliative care on the ward.

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Bulsink, H. and Georges, J. (2013) The experience of caring for a dying client with intellectual disabilities. A qualitative study with direct-caregivers. Open Journal of Nursing, 3, 568-575. doi: 10.4236/ojn.2013.38078.

Conflicts of Interest

The authors declare no conflicts of interest.


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