‘We need to be the centrepiece’: Adults with cerebral palsy and complex communication needs discuss the roles and needs of family carers in hospital

Abstract

Purpose. The aim of this study was to explore the perceptions of adults with cerebral palsy and complex communication needs (CCN) on the roles and needs of their family carers in hospital. Method. As part of a larger study we conducted one focus group with six adults with cerebral palsy and CCN who participated in the group using a variety of augmentative and alternative communication methods. Results. Participants explored why and how family carers become involved in care in hospital, what this care involves, and how this impacts upon themselves as patients and on their family carers. Reasons underlying their dependence upon family carers during a hospital stay were outlined, particularly the carer's role in communication, information exchange and access to essential daily care. Strategies to improve the experience for family carers in hospital were discussed. Conclusion. Involvement of family carers of people with cerebral palsy and CCN during an inpatient hospital stay is complex. Although they depend upon others for communication support, these individuals with CCN wish to be treated as adults in hospital and included in decisions about their healthcare. They want to be involved in the education of hospital staff, and to communicate directly with hospital staff.