Abstract
Purpose. To expand understanding of informal stroke care-giving, validated tools previously used in Hong Kong and in the UK were used with Australian stroke carers to assess their stroke-related knowledge, perceived needs, satisfaction with services received and sense of burden after stroke patients' discharge home from acute hospital care.
Methods. Record audit and telephone interviews with two cohorts of 32 carers recruited in Sydney and Brisbane 1 and 3 months post-hospital discharge, using validated scales and open questions in May–July 2006.
Results. Female carers, those with prior care-giving responsibility, and those interviewed at three compared to one month post-discharge reported greatest needs and burden from the care-giving role; needs alone significantly predicted burden. Getting information and being prepared for life after discharge were central concerns. Some felt this was accomplished, but inadequate information giving and communication mismatches were apparent.
Conclusions. Service providers need to develop partnership working with stroke families and provide a network of services and inputs that cut across conventional boundaries between health and social care, public, private and voluntary organisations, with care plans that deliver what they delineate. Stroke care-givers have common issues across countries and healthcare systems; collaborative research-based service development is advocated.
Keywords:
Acknowledgement
The study would not have been possible without the able assistance of Mrs. Catherine Crowe, previous Area Stroke Clinical Nurse Consultant, South West Sydney Area Health Service and Mrs Kellie Keane, previously Stroke Research Co-ordinator, Royal Brisbane and Women's Hospital, and the staff, patients and their family carers at these locations.
Declaration of interest: The conduct of this study was supported by a Distinguished Visiting Fellowship Award to the first author by Australian Catholic University.