Seminar Review – To Mortality And Beyond

19 June 2024

PhD Student Daniel Sutherland reviews CIDD seminar ‘To Mortality and Beyond: reflections on death, dying and intellectual disability research’ by Stuart Todd, University of South Wales.

Seminar Review – To Mortality And Beyond

19 June 2024

PhD Student Daniel Sutherland reviews CIDD seminar ‘To Mortality and Beyond: reflections on death, dying and intellectual disability research’ by Stuart Todd, University of South Wales.

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For the June CIDD seminar, we heard from Professor Stuart Todd – Professor in Intellectual Disability research at the University of South Wales, who discussed the important topic of death, dying, and research with people with learning disabilities

Professor Todd began by highlighting that research related to death and people with learning disabilities has often focused on when people die and what caused their deaths. This research has been crucial for highlighting the premature and often preventable deaths of many with learning disabilities and drawing attention to ways of tackling these challenges. However, there has been little attention to the experiences of people with learning disabilities and their families in the last months of their lives, and the experience of bereavement following the deaths of people with learning disabilities.

What do we know about the end of life of people with learning disabilities?

There has been relatively small but growing interest in improving access to and the quality of end-of-life care of people with learning disabilities. Many concerns about this care have been identified such as it being difficult to access, poorly planned, and people with a learning disabilities’ voices not being listened to. Furthermore, the deaths of people with learning disabilities are far more likely to be unexpected or sudden, which can contribute to poorer end-of-life care.

What can be done to improve end-of-life care of people with learning disabilities?

Professor Todd discussed several changes that might be important for improving end-of-life care. Given that people with learning disabilities deaths are often unexpected, it is important to improve monitoring of their health and support health and care professionals to identify those who may be reaching the end of their life to ensure they receive appropriate, high-quality care. He also identified the importance of having conversations about death and dying with people with learning disabilities before they are acutely unwell to help those around them understand their wishes and plan accordingly.

The experience of bereavement following the death of a person with learning disabilities

Next, Professor Todd highlighted that lack of research looking at the experiences of families following the death of a person with learning disabilities. In the research that has been done, families describe the scale and impact of their loss being neglected or misunderstood by others in ways that reflect stigma towards people with learning disabilities. As is true for other bereavements, many family members describe their continued relationship with their family member with learning disabilities after their death. It is crucial that research aims to improve our understanding of bereavement among families of people with learning disabilities to ensure that appropriate support is available.

Summary of talk

There is a clear need to better understand issues related to death and bereavement among people with learning disabilities. Professor Todd’s talk was a valuable exploration of key topics connected to death and dying, and how researchers and healthcare professionals can work towards the goals of people with learning disabilities receiving higher-quality end-of-life care, and their families receiving appropriate bereavement support.

 

Cerebra PhD Daniel Sutherland
Daniel Sutherland

Daniel Sutherland is a PhD student at the Centre for Research in Intellectual and Developmental Disabilities (CIDD) at the University of Warwick

 

Read about the research projects we have funded at CIDD.

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