“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

IF 1.9 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL

Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-09-13 DOI:10.1111/jar.70121

Maria Bonin, Helena Taubner

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Abstract

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.

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“我不必说他们现在正在死亡”：专业人士对德国儿科姑息治疗中与智障儿童和青少年的死亡相关沟通的看法

背景在姑息治疗中患有生命限制疾病的儿童和年轻人通常有一定程度的智力残疾。关于与这一患者群体的死亡交流的文献有限。本研究旨在探讨专业人员对德国姑息治疗中与智障儿童和青少年的死亡沟通的看法。方法对7名从事儿科姑息治疗的工作人员进行访谈。采用半结构化访谈和专题分析的定性研究设计。结果确定了两个主要主题：调整沟通风格以满足需求和能力，以及引导所涉及人员的多样性特征。沟通适应每个孩子或年轻人的需要，并强调具有挑战性。结论儿童和青少年的状况和功能、父母的信念、专业人员对儿童和青少年智力残疾的态度以及他们对儿童和青少年需求的不确定性是影响死亡、临终和悲伤沟通的因素。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of Applied Research in Intellectual Disabilities Multiple-

CiteScore

4.70

自引率

12.50%

发文量

期刊介绍： JARID is an international, peer-reviewed journal which draws together findings derived from original applied research in intellectual disabilities. The journal is an important forum for the dissemination of ideas to promote valued lifestyles for people with intellectual disabilities. It reports on research from the UK and overseas by authors from all relevant professional disciplines. It is aimed at an international, multi-disciplinary readership. Topics covered include community living, quality of life, challenging behaviour, communication, sexuality, medication, ageing, supported employment, family issues, mental health, physical health, autism, economic issues, social networks, staff stress, staff training, epidemiology and service provision.