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"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
Jönköping University, School of Education and Communication. Institute for General Practice and Palliative Care, Hannover Medical School, Hanover, Germany.
Jönköping University, School of Education and Communication, HLK, CHILD.ORCID iD: 0000-0002-0826-4735
2025 (English)In: JARID: Journal of applied research in intellectual disabilities, ISSN 1360-2322, E-ISSN 1468-3148, Vol. 38, no 5, article id e70121Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
John Wiley & Sons, 2025. Vol. 38, no 5, article id e70121
Keywords [en]
children and young people, death communication, grief, intellectual disabilities, paediatric palliative care
National Category
Nursing Pediatrics
Identifiers
URN: urn:nbn:se:hj:diva-69787DOI: 10.1111/jar.70121ISI: 001570371100001PubMedID: 40944555Scopus ID: 2-s2.0-105015817823Local ID: HOA;;1036174OAI: oai:DiVA.org:hj-69787DiVA, id: diva2:1999419
Available from: 2025-09-19 Created: 2025-09-19 Last updated: 2025-10-13Bibliographically approved

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Taubner, Helena

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