ERIC Number: EJ1487651
Record Type: Journal
Publication Date: 2025-Sep
Pages: 10
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1360-2322
EISSN: EISSN-1468-3148
Available Date: 2025-09-13
"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
Journal of Applied Research in Intellectual Disabilities, v38 n5 e70121 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.
Descriptors: Death, Children, Youth, Interpersonal Communication, Intellectual Disability, Pediatrics, Foreign Countries, Patients, Health Personnel, Individual Characteristics, Terminal Illness
Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www-wiley-com.bibliotheek.ehb.be/en-us
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Identifiers - Location: Germany
Grant or Contract Numbers: N/A
Author Affiliations: 1School of Education and Communication, Jönköping University, Jönköping, Sweden; 2Institute for General Practice and Palliative Care, Hannover Medical School, Hanover, Germany

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