Role confusion as a barrier to effective carer involvement for people with intellectual disabilities in acute hospitals: findings from a mixed-method study

AIMS: To understand issues around carer roles that affect carer involvement for people with intellectual disabilities in acute hospitals. BACKGROUND: There is evidence that a lack of effective carer involvement can lead to poorer health outcomes for people with intellectual disabilities, but there is a lack of insight into the reasons for poor carer involvement in acute hospitals. DESIGN: Mixed methods in six acute hospital trusts in England (2011-2013). METHODS: Electronic hospital staff survey (n = 990), carer questionnaires (n = 88), semi-structured interviews with hospital staff (n = 68) and carers (n = 37). Data were triangulated and analysed using a conceptual framework. RESULTS: There was strong support for carer involvement among hospital staff, and most carers indicated that they felt welcomed and supported. However, an investigation of negative experiences showed that there were discrepancies in the perspectives of hospital staff and carers on the scope of 'carer involvement'. An important contributory factor to the effectiveness of carer involvement was the degree to which staff understood the importance of carer expertise (rather than simply carer work) and welcomed it. Carers' contributions to basic nursing care tasks could be taken for granted by hospital staff, sometimes erroneously. CONCLUSION: The roles and contributions of carers should be clarified on an individual basis by hospital staff. The authors propose a new model to support this clarification. Further research is needed to assess the suitability of the model for patients with intellectual disabilities and other vulnerable patient groups.