Running a research consultation group with parents and carers of children with complex health needs who use children’s rehabilitation therapy services: practical considerations and insights

Participatory research, user involvement, consultation, co-production, and service user participation are terms and approaches that ensure the beneficiaries of research shape how it is developed and conducted.

While such approaches are accepted practice there is little guidance for researchers on how to conduct such activities with parents/carers of children with complex health needs.

Using insights from a series of consultation activities, the authors explore ways to work effectively with parents/ carers when care responsibilities and other constraints may restrict or limit their ability to participate.

We defined children with complex needs children as those who use two or more therapy services (Occupational therapy, Speech and Language Therapy and Physiotherapy) on a regular basis.