CONTINUING OUR NEW SERIES: PALLIATIVE CARE AND INTELLECTUAL DISABILITIES…
A new multi-media resource, based on what people with Intellectual Disabilities, family carers and professionals believe to be important when caring for people with intellectual disability at end of life, is now freely available across the world. Dr Dorry McLaughlin, Project Lead, and formerly Lecturer in Palliative Care and Chronic Illness, School of Nursing and Midwifery, Queen’s University, Belfast, Northern Ireland, UK, explains.
It is thought that if we can get palliative care right for people with Intellectual Disabilities then we will have a much better chance of getting it right for a lot of other people. So how do we enable people with Intellectual Disabilities to die well as a group of people who have similar palliative and end-of-life care needs to the general population but have additional needs, which services need to recognise and address?
Working in the Hospice World for most of my career, as a community specialist palliative care nurse, lecturer and researcher, I became aware that people with Intellectual Disabilities seldom accessed palliative care services. This lack of experience in caring for people with Intellectual Disabilities meant that many staff lacked confidence, knowledge and skills in caring for his group of people at end of life. Concerns about the quality of end-of-life care, that people with Intellectual Disabilities sometimes received, were emerging from the media and policy documents. The concept of Palliative Care and Intellectual Disability Services working together, rather than separately, was recognised as fundamental in developing this area of practice.
Developing an educational tool
Undertaking a Health and Social Care Research and Development Doctoral Fellowship Study, at Ulster University in Northern Ireland, enabled me to explore this area of practice by collecting the views of people with Intellectual Disabilities, family carers and Health and Social Care Professionals. The study’s findings showed a wide range of professional learning needs in addition to examples of good practice across both Intellectual Disability and Palliative Care Services. These findings informed the development of an educational tool, in the form of a DVD and Manual, generated for professionals caring for people with Intellectual Disabilities at end of life.
A strong service user perspective was present in both the design and delivery of the resource. Within DVD clips, people with Intellectual Disabilities took part in role play and a bereaved family carer talked about the positives and challenges of the palliative care journey in caring for a family member with Intellectual Disabilities. Published best practice standards, and international research findings focusing on end-of-life care for people with Intellectual Disabilities, were also part of the content of this resource.
Refining the tool into a multi-media, open access resource
I am grateful to the All Ireland Institute of Hospice and Palliative Care (AIIHPC) for the award of an educational fellowship to enable me to further update and develop this educational tool into a multi-media, open access, online resource. This funding enabled me to visit nationally recognised examples of good practice in end-of-life care for people with Intellectual Disabilities and to embed podcasts within the resource telling the stories of these examples of good practice. This resource is now freely available, across the world, to health and social care professionals caring for people with Intellectual Disabilities at end of life. The content of this resource is based on what people with Intellectual Disabilities, family carers and professionals believe to be important when caring for people with intellectual disability who require palliative and end-of-life care.
Some quotes from professionals who have used the resource:
‘Excellent resource to support learning.’
‘Very informative introduction to the area-confidence building.’
‘I found it very helpful to develop my understanding on palliative care in the intellectual disability sector.’
‘Comprehensive and extensive range of knowledge and very user friendly.’
Accessing the multi-media resource
This multi-media, open access, online resource ‘Widening Access to Palliative and End of Life Care for People with Intellectual Disabilities’ can be accessed through the AIIHPC Palliative Hub Learning Platform. Click here and login (or register free of charge).
Links and resources
- The European Association for Palliative Care (EAPC) Reference Group on Intellectual Disability.
- Please complete the PEPIC19 survey: An international survey of end-of-life and palliative care of people with intellectual disabilities.
Published papers linked with this project
McLaughlin, D., Barr, O., McIlfatrick, S., McConkey, R (2014) Developing a best practice model for partnership practice between specialist palliative care and learning disability services: A mixed methods study. Palliative Medicine28 (10), 1213-1221.
McLaughlin, D., Barr, O., McIlfatrick, S., McConkey, R (2015) Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities. BMJ Supportive and Palliative Care5 (5), 531-537.
The content of this resource also reflects the European Association for Palliative Care White Paper on Consensus Norms for Palliative Care of People with Intellectual Disabilities in Europe.
Other related papers
Tuffrey-Wijne, I., McLaughlin, D., Curfs, L., Dusart, A., Hoenger, C., McEnhill, L., Read, S., Ryan, K., Satge, D., Straber, B., Westergard, BE., Oliver, D (2016) Defining consensus norms for palliative care of people with intellectual disabilities in Europe using Delphi methods: A White Paper from the European Association of Palliative Care. Palliative Medicine 30 (5), 446-455. Download the article here.
Tuffrey-Wijne, I and McLaughlin, D (2015) Consensus norms for palliative care of people with Intellectual Disabilities in Europe. EAPC White Paper. Download the article here.
My grateful thanks to the Project Team (listed below) for all of their help in the development of this multi-media resource. I am also grateful to the interdisciplinary, Expert Reference Group who reviewed the resource and provided feedback. Further details of this group are listed within the resource.
Dr Dorry McLaughlin 1 Mr Matt Birch 1 Professor Owen Barr 2 Professor Sonja McIlfatrick 2 Dr Kumar Cithambaram1 Professor Kevin Brazil 1 Dr Gillian Carter 1
1 School of Nursing and Midwifery, Queens University Belfast, N. Ireland.
2 School of Nursing, Ulster University, N. Ireland.