Older parent carers of adults with complex communication needs and their experiences in providing unpaid care in hospital

Aim: To explore the role and experiences of older parent carers providing care and support to people with disability who are unable to speak in hospital. Method: Older parent carers of 10 adults with cerebral palsy and no functional speech participated in in-depth interviews about their experiences in hospital. The resulting conversational narratives were analysed according to narrative inquiry. Results: A meta-story is presented that encompasses the participants’ range of experiences and the impact of the hospitalisation of their loved ones upon them. Different attitudes, strategies and adaptations of the older parents to working on the hospital ward are highlighted. Conclusions: Older parent carers adopt a range of strategies in (a) securing and defending a tenuous role on the ward, (b) gaining, supervising or providing the necessary care for their adult son or daughter; (c) interpreting communicationattempts, and (d) enabling the nurse to interact with and communicatedirectly with their non-speaking sons and daughters. The older parents’ attitudes, preparation for and response to situations of ‘trouble’ on the hospital ward are explored in relation to their fears or confidence for the future when they are no longer able to provide care in the hospital setting.