Zorgen voor een client met een verstandelijke beperking in de laatste fase van zijn leven

Abstract

Background - It is known that direct-care professionals of palliative care to people with intellectual disabilities experience problems. Unknown is how caregivers experience palliative care and what this care means to them. It is unclear what affects this experience. Also unknown is how caregivers handle problems they experience. Aim - To describe the experience from the perspective of the caregiver when caring for a person with intellectual disabilities in palliative care and what influences this. The results will contribute to improve education and support for direct caregivers and consequently improving palliative care of people with intellectual disabilities. Qualitative research was performed through fifteen interviews with caregivers in a living facility with 24/7 care. Grounded Theory method was used in data collection and data analyzing. Results – Caregivers caring for a client experience mostly wanting to be meaningful to the client in the last period of his life. To make sure they act correctly, they seek reassurance, by continuously observation and interpreting his signals. The special atmosphere on the ward contributes to a positive experience. Because the relation with the client is necessary to recognize the clients’ signals, the caregiver is emotional involved with the client. Conclusion - Caregivers experience an intensive time being insecure about their care giving as well as a special time because they can be of significance to the dying client. Extra staff is necessary to take good care of a client and to say goodbye. Communication and support from physician and manager can help direct-caregivers. Education is needed about background of choices that can be made. More knowledge is needed of the relation between emotional involvement and professionalism.