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Open Access Study protocol

Randomized clinical trial of the timing it right stroke family support program: research protocol

Jill I Cameron12*, Gary Naglie345, Monique A M Gignac67, Mark Bayley89, Grace Warner10, Theresa Green11, Anna Czerwonka12, Maria Huijbregts1213, Frank L Silver14, Steve J Phillips15 and Angela M Cheung1617

Author Affiliations

1 Department of Occupational Science and Occupational Therapy, University of Toronto, 160-500 University Ave, Toronto, Ontario M5G 1V7, Canada

2 UHN Toronto Rehabilitation Institute, Toronto, Canada

3 Department of Medicine and Rotman Research Institute, Baycrest Health Sciences, 3560 Bathurst Street, Toronto, Ontario M6A 2E1, Canada

4 Research Department, UHN Toronto Rehabilitation Institute, Toronto, Canada

5 Department of Medicine and Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada

6 UHN Toronto Western Research Institute, 399 Bathurst Street, Main Pavilion, 10-328, Toronto, ON ON M5T 2S8, Canada

7 Dalla Lana School of Public Health, University of Toronto, Toronto, Canada

8 UHN Toronto Rehabilitation Institute, University Centre, University of Toronto, 550 University Avenue, Toronto, Ontario M5G 2A2, Canada

9 Department of Medicine, University of Toronto, Toronto Canada

10 School of Occupational Therapy, Dalhousie University, 5689 University Ave, Halifax, Nova Scotia B3H 3J5, Canada

11 Faculty of Nursing, University of Calgary, 2500 University Dr NW, Calgary AB T2N 1N4, Canada

12 Family Service Toronto, 355 Church Street, Toronto, Ontario M5B 1Z8, Canada

13 Department of Physical Therapy, University of Toronto, Baycrest Health Sciences, Toronto, Canada

14 UHN Toronto Western Hospital, 399 Bathurst Street, Toronto, ON M5T 2S8, Canada

15 Department of Medicine, Division of Neurology, Dalhousie University/QEII Health Sciences Centre, 1796 Summer Street, Halifax, Nova Scotia B3H 3A7, Canada

16 UHN Toronto General Hospital, 200 Elizabeth Street, 7 Eaton North - room 221, Toronto, Ontario M5G 2C4, Canada

17 Department of Medicine, University of Toronto, Toronto, Canada

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BMC Health Services Research 2014, 14:18  doi:10.1186/1472-6963-14-18

Published: 17 January 2014

Abstract

Background

Family caregivers provide invaluable support to stroke survivors during their recovery, rehabilitation, and community re-integration. Unfortunately, it is not standard clinical practice to prepare and support caregivers in this role and, as a result, many experience stress and poor health that can compromise stroke survivor recovery and threaten the sustainability of keeping the stroke survivor at home. We developed the Timing it Right Stroke Family Support Program (TIRSFSP) to guide the timing of delivering specific types of education and support to meet caregivers’ evolving needs. The objective of this multi-site randomized controlled trial is to determine if delivering the TIRSFSP across the stroke care continuum improves caregivers’ sense of being supported and emotional well-being.

Methods/design

Our multi-site single-blinded randomized controlled trial will recruit 300 family caregivers of stroke survivors from urban and rural acute care hospitals. After completing a baseline assessment, participants will be randomly allocated to one of three groups: 1) TIRSFSP guided by a stroke support person (health care professional with stroke care experience), delivered in-person during acute care and by telephone for approximately the first six to 12 months post-stroke, 2) caregiver self-directed TIRSFSP with an initial introduction to the program by a stroke support person, or 3) standard care receiving the educational resource “Let’s Talk about Stroke” prepared by the Heart and Stroke Foundation. Participants will complete three follow-up quantitative assessments 3, 6, and 12-months post-stroke. These include assessments of depression, social support, psychological well-being, stroke knowledge, mastery (sense of control over life), caregiving assistance provided, caregiving impact on everyday life, and indicators of stroke severity and disability. Qualitative methods will also be used to obtain information about caregivers’ experiences with the education and support received and the impact on caregivers’ perception of being supported and emotional well-being.

Discussion

This research will determine if the TIRSFSP benefits family caregivers by improving their perception of being supported and emotional well-being. If proven effective, it could be recommended as a model of stroke family education and support that meets the Canadian Stroke Best Practice Guideline recommendation for providing timely education and support to families through transitions.

Trial registration

ClinicalTrials.gov: NCT00958607.

Keywords:
Stroke; Caregiver; Mixed methods; Randomized controlled trial; Social support; Education; Longitudinal