Publication
"I Don't Have to Say That They Are Dying Now": Professionals' Perspectives on Death-Related Communication With Children and Young People With Intellectual Disabilities in Paediatric Palliative Care in Germany
Bonin M, Taubner H · Journal of applied research in intellectual disabilities : JARID · 2025
Background: Children and young people with life-limiting conditions in palliative care often have some degree of intellectual disability. Literature about death communication with this patient group is limited. This study aimed to explore professionals' perspectives on death communication with children and young people with intellectual disabilities in palliative care in Germany. Methods: Seven participants who worked in paediatric palliative care were interviewed. A qualitative study design was utilised with semi-structured interviews and a thematic analysis. Results: Two main themes were identified: Tailoring communication styles to meet needs and abilities and Navigating the diversity of characteristics of the people involved. Communication was adapted to each child's or young person's needs and highlighted as challenging. Conclusion: Children's and young people's condition and functioning, parents' beliefs, professionals' attitudes regarding intellectual disability, and their uncertainty about children's and young people's needs were factors influencing communication about death, dying, and grief.
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.