Communicating about death and dying: Developing training for staff working in services for people with intellectual disabilities

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...

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Bibliographic Details
Published in:Journal of applied research in intellectual disabilities 2017-11, Vol.30 (6), p.1099-1110
Main Authors: Tuffrey‐Wijne, Irene, Rose, Tracey, Grant, Robert, Wijne, Astrid
Format: Article
Language:English
Subjects:
Attitude of Health Personnel
Attitude to Death
Barriers
bereavement
Caregiver Role
Caregiver Training
Communication
Cultural Influences
Death
Death & dying
death and dying
Educational Needs
Familiarity
Fear
Feedback (Response)
Health Personnel - education
Humans
Intellectual disabilities
Intellectual Disability
Interpersonal Communication
Male
Professional-Patient Relations
Program Effectiveness
Questionnaires
Residential Care
Semi Structured Interviews
Staff Development
staff training
Surveys and Questionnaires
terminal illness
Verbal communication
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Summary: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 residential/supported living services to establish training needs; (ii) three‐one‐day courses were attended by 114 staff and evaluated through questionnaires. The course consisted of World Café sessions, presentations and feedback by people with intellectual disabilities, and an expert teaching session. Results Staff fear, cultural influences and inexperience with death‐related conversations were major communication barriers. Evaluation of the course was overwhelmingly positive. Conclusions Intellectual disabilities services must have clear staff training strategies around death, dying and communication. More work is needed to assess the resource implications and impact on practice of different training methods and other support strategies.
ISSN:1360-2322
1468-3148
DOI:10.1111/jar.12382