Family carers’ experience of the need for admission of their relative with an intellectual disability to an Assessment and Treatment Unit

Abstract

Background: There is limited research that explores the experiences of family carers of individuals with an intellectual disability requiring admission to a specialist National Health Service Assessment and Treatment Unit. Accordingly, this study aimed to explore family carers’ experience in respect of this phenomenon and their relationships with professionals at this time. Methods: Interpretative phenomenological analysis was used. Six family carers (three mothers and three fathers) participated and were interviewed via the use of semi-structured interviews. Findings: Five major themes were developed to represent how carers made sense and gave meaning to their experience. They illustrate how this experience had a significant influence on their sense of value and self-identity. It resulted in higher levels of anxiety, stress and uncertainty about the future of their relative and their identity as a carer. Significantly, professionals are identified as having a pivotal role in influencing how carers come to view their sense of self, identity, value and importance. Conclusion: The admission of their relative was a time of increased vulnerability for carers in respect of maintaining a sense of self-identity. Engaging with services and professionals had a major influence on situating them within the social structure that makes up the formal system of support. This had a pivotal role in influencing and determining how participants identified with their sense of self.