Abstract

Objective: To describe the perceptions of people taking on a new or expanded caring role for an elderly patient recently hospitalised with a new or intensified health problem. Design: Observational study collecting qualitative data monthly for six months following patients’ discharge from hospital and attempted return to independent living in the community. Setting: Four South Australian acute hospitals (one metropolitan, three country). Subjects: 34 unpaid carers were nominated by 100 patients. 24 carers participated (17 elderly spouses, 3 younger family members, 4 neighbours and/ or friends). Results: The study highlighted carers’ perceptions of being unprepared for their new tasks, and their frustrations at the long-term and frequently significant changes to their lives brought about by assuming a caring role. Many carers felt their role had been imposed upon them without real choice, and that their own physical and emotional fitness for their new role had not been considered during discharge planning. Carers claimed to have been provided with little information about how to care for the patient, particularly when community services were seldom provided in the first week after discharge.  Stresses developed in many of the carer-patient relationships, and patient and carer morale was often low for months post-discharge. Discussion: Carers indicated that their tasks could have been made easier by more timely, targeted education about their patient’s condition and their role in managing it. They would have liked greater inclusion in discharge planning processes whilst the patient was in hospital, and more timely and appropriate provision of post-discharge services that were patient- and carer-focused, and which addressed their ability to live independently in the community. Conclusion: Discharge planning systems should take greater account of the motivation and needs of carers, especially when this role is new or becoming expanded, and of the barriers they face in undertaking their role.