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Background <p>To date, there have only been a&#xa0;few studies in which people with intellectual and developmental disabilities (PWD) have been asked how they imagine dying. Most of these studies did not take into account the heterogeneous nature of this group, whose different socioemotional, cognitive, and speaking abilities may influence how they imagine their own death.</p> Methods <p>As part of a&#xa0;qualitative study, guided interviews were conducted with 11&#xa0;adult PWD (9&#xa0;women, 2&#xa0;men; age 42–78&#xa0;years; on average mild intellectual disability, SEO [scale of emotional development] grade&#xa0;4.5, good language skills). Subsequently, a&#xa0;structuring content analysis according to Mayring was carried out.</p> Results <p>Most of the participants had a&#xa0;fairly well-developed understanding of death, and their ideas about it were usually religious (Catholic). However, many had only rudimentary concepts of the dying process, which often led to uncertainty and anxiety. They had often already lost a&#xa0;loved one, which was one reason for their interest in the topic. They reported their grief and fear of dying and losing loved ones. Almost all expressed a&#xa0;desire to die at home, surrounded by their loved ones.</p> Conclusion <p>The practical implications of this study include measures that should enable more PWD to die in familiar surroundings in the future. Furthermore, PWD need a&#xa0;broader knowledge of dying and death. When imparting this knowledge, their intellectual and socioemotional development must be taken into account. Caregivers also need intensive, practical training in this area. Moreover, PWD and their caregivers need palliative care support during the dying and bereavement process.</p>

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Vorstellungen vom Sterben bei Menschen mit einer leichten bis mittleren geistigen Behinderung

  • 期刊论文

  • 发表日期：

    2025年10月7日

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  • L. Habermann-Horstmeier

摘要

Background

To date, there have only been a few studies in which people with intellectual and developmental disabilities (PWD) have been asked how they imagine dying. Most of these studies did not take into account the heterogeneous nature of this group, whose different socioemotional, cognitive, and speaking abilities may influence how they imagine their own death.

Methods

As part of a qualitative study, guided interviews were conducted with 11 adult PWD (9 women, 2 men; age 42–78 years; on average mild intellectual disability, SEO [scale of emotional development] grade 4.5, good language skills). Subsequently, a structuring content analysis according to Mayring was carried out.

Results

Most of the participants had a fairly well-developed understanding of death, and their ideas about it were usually religious (Catholic). However, many had only rudimentary concepts of the dying process, which often led to uncertainty and anxiety. They had often already lost a loved one, which was one reason for their interest in the topic. They reported their grief and fear of dying and losing loved ones. Almost all expressed a desire to die at home, surrounded by their loved ones.

Conclusion

The practical implications of this study include measures that should enable more PWD to die in familiar surroundings in the future. Furthermore, PWD need a broader knowledge of dying and death. When imparting this knowledge, their intellectual and socioemotional development must be taken into account. Caregivers also need intensive, practical training in this area. Moreover, PWD and their caregivers need palliative care support during the dying and bereavement process.