Why it is crucial to involve families in all stages of childhood disability research

Abstract

Rosenbaum considered the pros andcons of partnerships between researchers and families wherethe families have greater power to influence the researchagenda and how research studies are designed. We were con-sulted when the editorial was being written and directed Pro-fessor Rosenbaum to relevant references on how public andpatient involvement is evolving in the UK. We write to furtherthe argument and express our strong view that it is crucial toinvolve families of disabled children, meaningfully, in allaspects of research. We also suggest that it is vital that serviceproviders are involved in this partnership, including cliniciansand those responsible for commissioning services. We set outthe theoretical arguments and describe our experiences in pur-suing such an approach. Our aim is to promote the involve-ment of families in childhood disability research. We viewfamily involvement as one of the most important contempo-rary issues in producing research that is relevant to improvingthe health and well-being of disabled children and their fami-lies.