Background: Previous trials of interventions to support stroke survivors and their families in the community have had contradictory and inconclusive results. Using the MRC Framework for Complex Interventions we developed a family support organiser (FSO) service and refined outcome measures for evaluation. We tested the effects of the intervention in a randomised controlled trial. Methods: From 1 March 1999 to 1 April 2001 all first-in-a-lifetime strokes (n = 513) were identified and 340 (96%) of eligible strokes randomised to receive FSO or usual care. Patients and their carers were followed up at 3 months and 1 year post-stroke. Outcomes included satisfaction (main outcome) with hospital staff and outpatient services, use of social services, reintegration to normal living (RNLI) and feelings about life after the stroke. Results: The mean number of contacts with the FSO was 15 (SD = 9.8) per patient. More intervention than control patients received some social services and had increased patient and carer satisfaction in most aspects, particularly with information about recovery and feeling that someone had listened. There was little evidence at 3 or 12 months of differences in RNLI. Conclusions: A meta-analysis of trials in this area is now needed along with further trials of interventions in subgroups of the stroke population to fully identify any benefits of the FSO role.

Keywords:
Community health services, Post-stroke family support, Stroke after-care
1.
Han B, Haley WE: Family caregiving for patients with stroke. Review and analysis. Stroke 1999;30:1478–1485.
2.
Bugge C, Alexander H, Hagen S: Stroke patients’ informal caregivers. Patient, caregiver, and service factors that affect caregiver strain. Stroke 1999;30:1517–1523.
3.
Madureira S, Guerreiro M, Ferro JM: Dementia and cognitive impairment three months after stroke. Eur J Neurol. 2001;8:621–627.
4.
Kong KH, Woon VC, Yang SY: Prevalence of chronic pain and its impact on health-related quality of life in stroke survivors. Arch Phys Med Rehabil 2004;85:35–40.
5.
Wolfe CDA, Rudd AG, Beech R: Stroke Services and Research: An Overview with Recommendations for Future Research. London, The Stroke Association, 1996.
6.
Dennis M, O’Rourke S, Lewis S, Sharpe M, Warlow C: A quantitative study of the emotional outcome of people caring for stroke survivors. Stroke 1998;29:1867–1872.
7.
Anderson CS, Linto J, Stewart-Wynne EG: A population-based assessment of the impact and burden of caregiving for long-term stroke survivors. Stroke 1995;26:843–849.
8.
Forster A, Young J: Specialist nurse support for patients with stroke in the community: a randomised controlled trial. BMJ 1996;312:1642–1646.
9.
Rodgers H, Atkinson C, Bond S, Suddes M, Dobson R, Curless R: Randomized controlled trial of a comprehensive stroke education program for patients and caregivers. Stroke 1999;30:2585–2591.
10.
Logan PA, Ahern J, Gladman JR, Lincoln NB: A randomized controlled trial of enhanced Social Service occupational therapy for stroke patients. Clin Rehabil 1997;11:107–113.
11.
Friedland JF, McColl M: Social support intervention after stroke: results of a randomized trial. Arch Phys Med Rehabil 1992;73:573–581.
12.
Towle D, Lincoln NB, Mayfield LM: Service provision and functional independence in depressed stroke patients and the effect of social work intervention on these. J Neurol Neurosurg Psychiatry 1989;52:519–522.
13.
Christie D, Weigall D: Social work effectiveness in two-year stroke survivors: a randomised controlled trial. Community Health Stud 1984;8:26–32.
14.
Richardson E, Warburton F, Wolfe CD, Rudd AG: Family support services for stroke patients. Prof Nurse 1996;12:92–96, 99.
15.
Dennis M, O’Rourke S, Slattery J, Staniforth T, Warlow C: Evaluation of a stroke family care worker: results of a randomised controlled trial. BMJ 1997;314:1071–1076.
16.
Mant J, Carter J, Wade DT, Winner S: Family support for stroke: a randomised controlled trial. Lancet 2000;356:808–813.
17.
Lincoln NB, Francis VM, Lilley SA, Sharma JC, Summerfield M: Evaluation of a stroke family support organiser: a randomized controlled trial. Stroke 2003;34:116–121.
18.
Pound P, Wolfe CD: Stroke in the community: the role of the family support organiser. Br J Ther Rehabil 1998;5:482–488.
19.
Medical Research Council: A framework for development and evaluation of RCTs for complex interventions to improve health. 2000. http://[www.mrc.ac.uk/pdf-mrc_cpr.pdf].
20.
McKevitt C, Wolfe CD: Community support after stroke: patient and carer views. Br J Ther Rehabil 2000;7:6–10.
21.
Zigmond AS, Snaith RP: The hospital anxiety and depression scale. Acta Psychiatr Scand 1983;67:361–370.
22.
Daneski K, Coshall C, Tilling K, Wolfe CDA: Reliability and validity of a postal version of the Reintegration to Normal Living Index, modified for use with stroke patients. Clin Rehabil 2003;17:835–839.
23.
Pound P, Gompertz P, Ebrahim S: Development and results of a questionnaire to measure carer satisfaction after stroke. J Epidemiol Community Health 1993;47:500–505.
24.
Mahoney FI, Barthel DW: Functional evaluation: the Barthel Index. Md State Med J 1965;14:61–65.
25.
Stewart JA, Dundas R, Howard RS, Rudd AG, Wolfe CD: Ethnic differences in incidence of stroke: prospective study with stroke register. BMJ 1999;318:967–971.
26.
van den Heuvel ETP, de Witte LP, Stewart RE, Schure LM, Sanderman R, Meyboom-de Jong B: Long-term effects of a group support program and an individual support program for informal caregivers of stroke patients: which caregivers benefit the most? Patient Educ Couns 2002;47:291–299.
© 2005 S. Karger AG, Basel
2005
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