gnificant
bias seems unlikely.
The most convincing evidence of benefit of the stroke family care
worker was in improving both patients' and carers' satisfaction in
respect of various aspects of communication. Intriguingly, patients in
the treatment group tended to be more helpless, less well adjusted
socially, and possibly more depressed. We could postulate that
intervention by the stroke family care worker, by providing support
rather than improving patients' coping skills, induced a passive
response to their illness which led to depression and poor social
adjustment. Also there was an encouraging trend for carers in the
treatment group to be less hassled and to have fewer mood symptoms,
especially anxiety, than those in the control group. These moderate
effects may, if real, accurately reflect the effectiveness of our
stroke family care worker. There are, however, several possible
explanations.
Firstly, the post was set up in the context of a well organised
stroke
service with excellent social work support, and many potential problems
for patients and carers were already predicted and averted or managed
by the hospital based team. The post might have had a greater effect in
a less well organised service. Secondly, we were concerned that follow
up at six months might be too early to show the real benefits of the
post. Patients and carers may still be adjusting to the stroke and
major problems may not yet have developed. At this stage many will
still be receiving conventional input from hospital and primary care.
Thirdly, we may have used measures of outcome which either were not
measuring outcomes which might be influenced by our intervention or
were insufficiently sensitive to any differences due to the
intervention. Fourthly, our trial was pragmatic and included 67% of
stroke patients. Possibly a subgroup of patients did benefit from the
input of the stroke family care worker. Fifthly, the stroke family care
worker responded to families' needs and wishes and may therefore
sometimes have provided too little input to affect outcome.
Though our trial results may be of limited generalisability because
we
evaluated only a single worker, they suggest that any gain was mainly
in satisfaction with aspects of communication and support after
hospital discharge, certainly in the setting of a well organised stroke
service. Future studies should examine these outcomes as well as
psychological ones. Whether purchasers will be willing to fund
interventions such as this
will depend on the value
that they and patients place on such outcomes. Perhaps we need to
establish how important patients and their carers regard such outcomes
before making any judgments. Pound et al identified
being "cared for" and "cared about" as of value to
patients,
and they regarded them as important advantages of hospital admission
after stroke.(21) We are currently planning a
systematic
review of previous and ongoing trials of similar interventions which
may go some way in establishing whether stroke family care workers from
different backgrounds-that is, working with different intensities
for
greater durations in different settings-might be more
effective.
| Key Messages |
| A stroke family care worker in the context of a well
organised
hospital based stroke service has no definite beneficial effect on the
physical, social, or psychological outcome of patients or their
carers
A stroke family care worker may reduce carers' hassles and
anxiety but render patients more helpless, less well socially adjusted,
and more depressed
A stroke family care worker may improve patients' and their
carers' satisfaction with those aspects of stroke services relating to
communication and support
Purchasers of health care need to decide the value they and
their patients place on satisfaction with health care |
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Funding: TS was supported by the Chest Heart and Stroke
Association (Scotland), MD by the Stroke Association, and JS and our
stroke register by the Medical Research Council. The trial was funded
by the Scottish Office Home and Health Department.
Conflict of interest: Continued funding of the stroke family
care worker relied on the outcome of this trial. As a result of the
outcome the post has been terminated.
(Accepted 16 October 1996)
Department of Clinical Neurosciences,
University of Edinburgh,
Western General Hospital,
Edinburgh EH4
2XU
Martin Dennis, Senior lecturer in stroke
medicine
Suzanne O'Rourke, Research
assistant
Jim Slattery, Senior
statistician
Trish Staniforth, Stroke
family care worker
Charles
Warlow, Professor of medical
neurology
Correspondence to: Dr
Dennis.
Commentary: No consent means not treating the patient with respect
Sheila McLean
Commentary: Why we didn't ask patients for their consent
Martin Dennis
Fig 1 - Number of stroke family care worker contacts
per patient (or family) in first six months after randomisation. Data
include face to face and telephone contacts.
