Professionals’ views on the roles and needs of family carers of adults with cerebral palsy and complex communication needs in hospital

Abstract

Background The aim of this study was to explore the views of hospital and disability service staff on the roles and needs of family carers of adults with cerebral palsy (CP) and complex communication needs (CCN) in hospital.

Method We conducted a focus group with six hospital and disability service staff, analysed the content themes of the group discussion, and verified the analysis with participants.

Results Participants highlighted the family carers’ expertise and roles in emotional and communication support, advocacy, and providing information. They acknowledged that there is a gap between the ideal of hospital staff being able to provide all necessary care to the patient with CP, and the reality of hospital staff relying upon family carers for their expertise and provision of patient care.

Conclusions Hospital and disability staff do not expect family carers to replace the nurse in caring for the patient with CP and CCN in hospital. Nevertheless, family carers provide valuable support in hospital. This includes support with communication, advocacy, protection, information exchange, direct care, and emotional support. Family carers with a high level of expertise in providing care may need support in adapting to the culture of care on the ward and in transferring their roles and expertise in direct care to hospital staff. In addition, they need emotional and practical support through the stressful experience of having a family member hospitalised.

Keywords:

• family care
• communication disability
• cerebral palsy
• hospital care
• focus group
• staff

Notes

1. CCN is a broad term used to describe functional outcome in communication according to skills and needs: “Some people have CCN associated with a wide range of physical, sensory and environmental causes which restrict/limit their ability to participate independently in society. They and their communication partners may benefit from using Augmentative or Alternative Communication (AAC) methods either temporarily or permanently.” (Balandin, 2002, p. 2)