Carers have to do more when hospital care provided in the home

Providing hospital services in a home or community setting often involves an “invisible contract” between health care providers and carers, according to new research published in the Australian Health Review.

“As our population ages and the rates of chronic disease increase, an increasing trend is to move patients out of hospital earlier and to substitute hospital-based rehabilitation and sub-acute care with services provided in a home or community setting,” Dr Briony Dow, study leader and Research Fellow, Preventive and Public Health Division, National Ageing Research Institute, said

“While this can both benefit patients and result in a more efficient use of health resources, it often places a greater burden on family members and carers. This may not be taken into account when developing and evaluating ‘hospital in the home’ programs.

“This study investigated the impact of rehabilitation-in-the-home programs on carers. As patients move from hospital to home, care responsibilities shift from paid staff to unpaid carers. These carers are relied upon by the state and by hospitals, yet they are not considered as members of the rehabilitation team. Their work is largely unrecognised and uncompensated and they have little say in care-planning decisions that impact upon their lives.

Specific issues identified by the study include:

. Hospitals have no formal process of identifying, recognising, and compensating carers.
. Discharges from hospital are often poorly planned and perceived to be more to do with the needs of the hospital than the patient. Carers are often not consulted and sometimes have no choice about discharge. Hospital staff interviewed reported that they were under pressure to discharge clients to home as soon as possible.
. Carers have a heavy work load with the majority interviewed working 24 hours a day, including several times at night.
. Carers often receive little recognition or reimbursement for their work. Many do not receive carer payments or have problems in accessing them.
. While most carers appreciated the assistance provided by community rehabilitation and support services, they reported difficulties in accessing information about these services.

“This study makes clear that it is not appropriate to simply transfer a model of care developed in a hospital setting to home-based programs. More work needs to be done if these programs are to be successful in achieving positive outcomes for consumers and carers. As a first step, written agreements between hospitals and carers should be developed which make explicit the expectations, reciprocal rights and entitlements of the carer.

“Secondly, program protocols should be reviewed so as to formally incorporate carers into case management planning processes. Finally, more research needs to be done into cost effectiveness of home-based substitute programs, which include more comprehensive and inclusive measures of the direct and indirect costs of carer contributions,” Dr Dow said.