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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
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Maria Bonin; Helena Taubner – Journal of Applied Research in Intellectual Disabilities, 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…
Descriptors: Death, Children, Youth, Interpersonal Communication
Shared Decision Making with Frail People with Intellectual Disabilities in the Palliative Phase: A Process Evaluation of the Use of the In-Dialogue Conversation Aid in Practice
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Noorlandt, H. W.; Korfage, I. J.; Felet, F. M. A. J.; Aarts, K.; Festen, D. A. M.; Vrijmoeth, C.; Van Der Heide, A.; Echteld, M. A. – Journal of Applied Research in Intellectual Disabilities, 2024
Background: This study reports the process evaluation of the In-Dialogue conversation aid to facilitate shared decision-making with people with intellectual disabilities in the palliative phase. Methods: Training for In-Dialogue was evaluated by 53 support staff members through questionnaires. The use of In-Dialogue in four residential care…
Descriptors: Intellectual Disability, Participative Decision Making, Residential Institutions, Residential Care
Paid Carers' Understanding and Experiences of Meaningful Involvement in Bereavement for People with Intellectual Disability When a Significant Other Is Dying
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Hedayioglu, Julie; Marsden, Sue; Sackree, Amy; Oliver, David – Journal of Applied Research in Intellectual Disabilities, 2022
Background: Wider communication about death and dying for those with intellectual disabilities has been highlighted as being of key importance. Objective: To gain the perspective of paid carers based in residential homes about meaningfully supporting individuals with intellectual disabilities in the bereavement process. Methods: Semi-structured…
Descriptors: Caregivers, Residential Care, Group Homes, Intellectual Disability
Communicating about Death and Dying: Developing Training for Staff Working in Services for People with Intellectual Disabilities
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Tuffrey-Wijne, Irene; Rose, Tracey; Grant, Robert; Wijne, Astrid – Journal of Applied Research in Intellectual Disabilities, 2017
Background: Many people with intellectual disabilities are affected by death, yet conversations about death are often avoided by staff working with them. This study aimed to assess staff training needs and to develop, trial and evaluate a training course on communicating about death and dying. Method:(i) Semi-structured interviews with 20 staff in…
Descriptors: Intellectual Disability, Death, Caregiver Role, Caregiver Training
Using Action Research to Design Bereavement Software: Engaging People with Intellectual Disabilities for Effective Development
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Read, Sue; Nte, Sol; Corcoran, Patsy; Stephens, Richard – Journal of Applied Research in Intellectual Disabilities, 2013
Background: Loss is a universal experience and death is perceived as the ultimate loss. The overarching aim of this research is to produce a qualitative, flexible, interactive, computerised tool to support the facilitation of emotional expressions around loss for people with intellectual disabilities. This paper explores the process of using…
Descriptors: Foreign Countries, Adults, Mental Retardation, Death