New research highlights parents' and carers' voice for people living with learning disabilities
21 October 2024
The importance of listening to the voice of parents and carers has been highlighted in new research to explore the experiences of accessing care and support for children living with learning disabilities in North Wales.
Improvement Cymru’s Learning Disability programme commissioned Dr Dawn Jones, Senior Lecturer in Social Care at Wrexham University, to carry out the research.
The research project worked with a range of families and people who support children living with learning disabilities in North Wales. The project was also informed by the experiences of professionals working in the health, social care, and education sectors. It follows an earlier literature review and evaluation of national care models and frameworks providing care for children and young people with a learning disability in Wales.
Listening to parents and carers
Rebecca Curtis, a Senior Improvement Manager for Improvement Cymru’s Learning Disability programme, said:
“In recent times, there has been a move towards models of integrated care that promote closer links between cross-sector services and there are inspirational examples of this working successfully. However, there’s lots of evidence that tells us there’s still a gap between the vision of care that informs policy and the reality faced by parents, carers, and children.
“We carried out a literature review last year and one of the key findings was the need to listen to the experiences and opinions of parents as carers. Our new research has given them a voice to share what is going well and what isn’t. It’s important to gain an authentic insight into what can be complicated challenges, and we were keen to give their views the depth and detail they deserve.
“Through focus groups and semi-structured interviews, Dr Jones provided patients and carers with a safe space to share how services are truly ‘lived’ so we could better understand what care for their child really looks and feels like.”
Key findings
The findings will be shared with Regional Partnership Boards across Wales, and other multi-disciplinary forums and communities of practice. The long-term purpose of the project is to promote the findings so there is clearer understanding of what works well and where there might be gaps in services.
Some of the key findings include:
- Parents and carers have variable experiences of professionals and services.
- Delivery of care can be fragmented and there are many accounts of unmet needs.
- Good experiences are overwhelmingly related to cases when professionals get to know a child and family properly and can advocate together for services to meet their needs.
- The rights of children and families must be the starting point of care planning. Feeling safe, valued, and part of the process is invaluable for parents and carers.
- Seeing the child first and the disability second is the foundation of good rights-based care.
- The better the links between health, social care, and education sectors, the more positive the experiences of parents, carers, and children are.
- Having access to ‘drop in’ hubs that provide integrated support may contribute to more positive experiences.
Read the findings in full now.
About the authors
Improvement Cymru’s Learning Disability programme works to create a safer and fairer Wales for people living with a learning disability. We believe everyone in our communities deserve effective and efficient care that meets their individual needs. We work with people throughout Wales to deliver projects that improve the health and wellbeing of people with a learning disability.
Dr Dawn Jones has been a member of the Social Sciences team at Wrexham University since 2007 and teaches on both the Sociology and Social Work programmes. She is now joint Programme Leader for the BA (Hons) Sociology degree.
An active sociology researcher, Dr Jones has published across the field of sociological theory, social policy, and the sociology of risk. She is also a research adviser to the Welsh Assembly Local Government Data Unit, where she advises on matters of research and policy.