Understanding the support needs of disabled children and their families in East Kent

Objective: Explore the support needs of parents and carers of children with physical disabilities (< 18 years) within a therapy service in the South East of England.

Method: Qualitative methods were used including focus groups and interviews with 9 parents/carers of children with a physical disability. Framework analysis approach was used to analyse the data.

Results:
Data was organised into the following themes.

• Parent and carer experiences of using services including direct experience of therapy services
• Education
• Organisation of services and access to information
• Impact of disability on family and carer life
• Experiences and views of personalised care.

Conclusions:
Parents and carers had varied experiences of therapy services. Parents and carers valued close relationships established over time when therapists had knowledge and understanding of their child and family situation. Families experienced most difficulty over the provision of equipment and poor liaison between different parts of the care system added to stress and frustration. Few parents and carers had knowledge or awareness of personal health budgets and were unsure about whether a personal budget would improve their access to or experience of therapy.