Intervention studies of carers of stroke survivors: A critical review

Rehabilitation Centre De Hoogstraat, Rembrandtkade 10, 3583 TM Utrecht, The Netherlands.
Patient Education and Counseling (Impact Factor: 2.2). 04/2005; 56(3):257-67. DOI: 10.1016/j.pec.2004.02.013
Source: PubMed


The objective of this review was to evaluate the effectiveness of different types of intervention programs for caregivers of stroke patients. A systematic search using Medline, PsychINFO, AMED and CINAHL till March 2003 was carried out and 22 studies were identified. Four types of support programs could be studied: providing specialist services, (psycho)education, counselling and social support by peers. Many different outcome domains and a variety of measures were used. Ten studies reported positive results on one or more outcome domains: reduction of depression (two studies) and burden (one), improvement of knowledge on stroke (five), satisfaction with care (one), family functioning (one), quality of life (three), problem solving skills (two), social activities (two), and social support (one). Three studies reported a negative result on caregiver outcome. We could not identify sufficient evidence to confirm the efficacy of interventions but counselling programs (3 out of 4) appear to have the most positive outcome.

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    • "This increases the demand placed upon family caregivers as they support individuals with considerable disability across fragmented systems of care with very limited support from community resources. To date, programs have been developed to provide stroke-specific information and caregiver training and counseling, but these have had only a small impact on improving caregiver well-being [13]. One possible explanation, for this for which there is emerging evidence, is that these programs do not consider caregivers’ changing needs across the care continuum [14,15]. "
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    ABSTRACT: 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. 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: NCT00958607.
    BMC Health Services Research 01/2014; 14(1):18. DOI:10.1186/1472-6963-14-18 · 1.71 Impact Factor
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    • "In 2007, relatives still reported feeling alone, and lack of coordination characterized the services they received [11]. The needs of relatives in relation to their dual role of caregiving and client [12] are now better defined [13], but the effectiveness of intervention provided to them remains mixed [14]. However, in most cases, offering information, training and support makes common sense as Rodgers and collaborators [15] pointed it out in a review of the topic. "
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    ABSTRACT: To document the ethical issues regarding the systematic inclusion of relatives as clients in the post-stroke rehabilitation process. A two-phase qualitative design consisting of in-depth interviews with relatives and stroke-clients (Phase 1) and three focus groups with relatives, stroke-clients and health professionals (Phase 2). Data was audio recorded. Transcribed interviews and focus groups content were rigorously analyzed by two team members. The interview sample was composed of 25 relatives and of 16 individuals with a first stroke whereas the three focus group sample size varied from 5 to 7 participants. Four main themes emerged: (1) overemphasis of caregiving role with an unclear legitimacy of relative to also be a client; (2) communication as a key issue to foster respect and a family-centered approach; (3) availability and attitudes of health professionals as a facilitator or a barrier to a family-centered approach; and (4) constant presence of relatives as a protective factor or creating a perverse effect. The needs of relatives are well known. The next step is to legitimize their right to receive services and to acknowledge the combined clinical and ethical value of including them post-stroke. Interdisciplinary health care approaches and communication skills should be addressed.
    Patient Education and Counseling 11/2013; 94(3). DOI:10.1016/j.pec.2013.10.028 · 2.20 Impact Factor
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    • "To this end, TPE fully incorporates effective communication. The integration of the systemic model into the medical model involves therapists in a system where everyone (liaisons, aphasic people, caregivers) tries to find concrete solutions to problematic situations [58] "
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    ABSTRACT: Objectives Focus on the different therapeutic patient education (TPE) programs for stroke survivors found in the literature. Verify their content and efficacy. Method A literature review was conducted by searching for entries from 1966 to 2011 in the Medline and Cochrane Library databases. The references for the accepted articles were taken into consideration and the articles corresponding to the criteria inclusion but not present within the initial search were selected. The keywords used were “self care”, “self management”, “patient education” and “stroke”. Given the multiplicity of symptoms that may be addressed in TPE programs, and following expert advice, the symptoms were grouped after expanding the bibliographic search using the following, additional keywords: “dysphagia”; “swallowing disorder”; “urinary incontinence”; “caregiver”; “fall prevention”; “falling”; “injury”; “shoulder pain”; “physical activity”; “exercise”; “aphasia” and “cognitive impairment”. Results We found 30 article abstracts. In the end, we only accepted seven articles on general TPE programs that were well structured and detailed enough. The TPE programs found in the literature were often of questionable methodological quality. The multiplicity of symptoms led to very general TPE programs that covered all possible stroke after-effects. The purpose of these programs was to reduce stress and anxiety, to improve quality of life and to alleviate psychosocial after-effects. A change in caregiver and patient behavior was observed at times. We expanded the bibliographic search to include scientific arguments that could help implement TPE programs for more specific targets. Conclusion TPE programs for stroke survivors could be improved by standardizing and assessing programs that focus on a specific problem caused by the various possible after-effects of strokes. In order to promote education for stroke survivors, specific training for health care professionals and appropriate funding are necessary.
    Annals of physical and rehabilitation medicine 12/2012; 55(s 9–10):641–656. DOI:10.1016/
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