Supporting parents after the loss of a child

Mencap Cymru, in partnership with the University of Wales in Bangor, ran a project to find out more about the support available to parents after the loss of a child with a learning disability. The project took place over three years, beginning in 2004 with a consultation with families, Cruse Bereavement counsellors and the All Wales Parents and Carers forum. All agreed that there was a lack of support and information available to parents who had lost a child.

We then contacted a number of families through Mencap Cyrmu and the Down's Heart Group - a support group who provide advice and support for people with Down's syndrome and heart difficulties, and their families. These families shared their experiences of losing a child or a grandchild and spoke of many common experiences, including:

  • the belief that health services could have been better organised
  • finding a lack of people to talk to about their loss
  • the experience of finding positive experiences in the death of their loved one, such as a career change.

As a result of the project findings, we hope to provide families with better access to support and information after the loss of a child. We also want to raise awareness amongst healthcare professionals and support services about what families might experience during a bereavement, and how best to support them during this time.

Key findings

Read the key findings from the project.

Case studies

Read case studies from the project

For further information about this project, please contact the intellectual and developmental disabilities research group in Bangor via email at