Aim: To explore the expectations, needs, and experiences of carers of older person’s following discharge from rehabilitation.
Methods: Longitudinal semi-structured interviews were conducted with six carers of rehabilitation patients aged >65 years, at discharge and three months follow-up. This study was conducted as part of a broader mixed-methods investigation into the experience of patients following inpatient rehabilitation at a purpose-built rehabilitation hospital in Brisbane, Australia. Data were analysed inductively using reflexive thematic analysis.
Results: Three themes were identified to describe carers expectations, needs, and experiences; 1) ‘adjusting’, 2) ‘unanticipated needs’, and 3) ‘willing sacrifice’. Carer’s health literacy, degree of communication with providers, and prior experiences in caring and health services acted as mediating factors in the evolution of their needs, expectations, and experiences. ‘Adjusting’ describes the evolution from not knowing what to expect, experiencing let downs, through to settling into their new normal. ‘Unanticipated needs’ describes how carers struggled to anticipate and identify what support they needed to both support their person and manage their own wellbeing. ‘Willing sacrifice’ describes the evolution in experience of carer’s feeling unprepared but ready for the challenge, followed by a significant role calibration, which ultimately resulted in an overwhelming workload with no support for the carer.
Conclusion: Carers are often crucial in supporting patients’ recovery following discharge, however, are given minimal preparation, support, and recognition for their role. Rehabilitation services need to proactively engage carers during patients’ admissions to ensure they are better equipped to manage their post-discharge support needs and well-being.