1.Stroke is a major cause of long-term disability, often with
devastating consequences for individuals and their families.
It has been argued that most care and support come from
informal sources such as family members, particularly those
living with the patient.1 The cost of replacing the support
provided by informal caregivers is considerable.2 A service
designed to support informal caregivers and enhance their
quality of life is likely to have a direct influence on patients’
emotional and physical health.3
2.Patients at risk from less-than-optimal home care and
recovery have been found to have caregivers who were more
likely to be depressed and have relatively little knowledge of
stroke.4 Similarly, patients experience physical limitations
and emotional distress that are exacerbated by a lack of
information about their condition5 and poor knowledge of the
services and benefits available.6 Stroke support services to
address these issues are developing but vary considerably in
the United Kingdom and other countries.8
3.There is mixed evidence on which to base the provision of
outpatient stroke support services for patients and caregivers.
9–11 For example, a combined counseling and education
program significantly improved caregiver knowledge and
stabilized some aspects of family function better than routine
care.10 However, Friedland and McColl11 found no significant
differences between a social support intervention group and a
control group on psychosocial measures.
4.Recent trials of the Stroke Association’s Family Support
Organiser (FSO) service have also failed to show significant
psychosocial benefits for patients from the provision of
information, emotional support, and liaison with other services.
12,13 However, caregiver outcomes showed significant
psychosocial benefits and satisfaction with knowledge about
stroke and stroke services.13
5.The purchase of these services by health authorities is
largely dependent on evidence of the effectiveness of the
intervention and local need.14 Therefore, further evaluations
of the FSO service in other geographical settings were needed
to support the generalizability of findings across locations.
We conducted a single-blind, randomized controlled trial to evaluate the benefits of a family support organizer in North
Nottinghamshire, UK, on patient and caregiver outcomes of
emotional health, independence in personal and instrumental
activities of daily living, knowledge of stroke, and satisfaction
with stroke services.