Engaging with Families About Cerebral Palsy Research

Dr Christina Smith, Division of Psychology and Language Science

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The issues and concerns of families who have a child who has cerebral palsy are not often at the centre of decisions regarding research programmes. We will bring together a group of local families to participate in two focus groups. In these sessions, the families will discuss their experiences, both positive and negative, of having a family member who has physical, medical and often cognitive difficulties.

By bringing families, researchers, clinicians and voluntary organisations together, we aim to develop research initiatives that address some of the significant concerns for individuals and families with cerebral palsy, with the ultimate aim of enhancing these families' quality of life. We will work collaboratively to agree research priorities and continue to work with these families to achieve these goals and disseminate the outcomes.

We will reflect on the outcomes of this collaborative model of working, and if it is effective, we will adapt it to work with other groups of individuals with communication and swallowing difficulties, for example adults who have had a stroke, or children with language impairment.

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