Puzzle Pieces - Review of Interventions for Stroke Caregivers and Dyads

Most stroke survivors are cared for in home settings by unpaid family members, such as relatives, partners, friends, and/or neighbors.^{1, 2} The interventions that help these caregivers and caregiver and stroke survivor dyads (an active pair of participants) can be a puzzle. One piece of this puzzle is that not much is published on the positive outcomes of family caring, such as increased feelings of closeness or togetherness and/or knowledge of their situation.^{3, 4} More often the puzzle pieces reflect that caring leads to negative outcomes^5-7 (e.g., physical distress, emotional upheaval, financial burden). Interventions to address these outcomes are many and varied. In starting to put this puzzle together, the American Heart Association/American Stroke Association’s new scientific statement, “Evidence for Stroke Family Caregiver and Dyad Interventions,” represents a major advance in examining interventions targeted at stroke family caregivers and dyads.⁸ This writing group is to be commended in that they undertook this systematic review focused on interventions, and created evidence-based recommendations on which to build, with the potential to inform stroke outcomes for these caregivers and survivors.

The writing group’s search protocol included examining English-language publications in MEDLINE, PubMed, CINAHL, and psychINFO databases and sources from reference lists of relevant articles from January 1990 – October 2012 using pertinent key words. They included studies focused on caregiver and dyad interventions and outcomes over the stroke continuum of care from acute hospitalization through rehabilitation treatment and ending in home or long-term care. A PRISMA flow diagram tracked this search that culminated in uncovering 39 articles representing 32 intervention studies (17 caregiver focused; 15 caregiver/dyad focused) for critical analysis. These authors provided methodological quality information, using recommendations from the American Heart Association guidelines for applying classification of recommendations and level of evidence. They found that the majority of these studies were at Level A, randomized controlled trials (RCTs), and that the implemented interventions may be useful, not harmful. This review extracted and presented data from the primary and quantitative studies in a logical and comprehensive manner.

The writing group’s appraisal, reflected in the scientific statement, is that the evidence supports that it may be reasonable to conclude that caregiver interventions might be useful in improving their outcomes. However, it remains unknown if these interventions result in improved outcomes for stroke survivors. And though dyad interventions may have the potential to improve survivor outcomes, dyad interventions seem to have little impact on caregiver outcomes. Based on this evidence, these authors suggest interventions using a psycho-education/information and support component in combination with skill-building/goal setting strategy may improve outcome (e.g., depressive symptoms and life quality for survivors and caregivers).

Highlights of the recommendations for caregiver and dyad interventions by the writing group include the following:⁸

• Caregiver versus dyad interventions: When stroke caregiver outcomes are favored, stroke caregiver interventions are more likely recommended over dyadic interventions; and when stroke survivor outcomes are favored, stroke dyad interventions are more likely recommended over stroke caregiver interventions.
• Types of interventions: Skill-building/goal setting strategies with psycho-education/information and support components should be implemented in preference to only psycho-education strategies; in other words, use of only psycho-education interventions is not recommended and support only or a combination of support and psycho-education are not supported by adequate robust evidence.
• Individualized interventions: Tailored interventions to the needs of stroke caregivers should be chosen over ‘one size fits all’ interventions; tailored interventions should be based on needs assessments to have better caregiver outcomes as the stroke survivor journey continues; thus, tailored interventions are more likely suggested rather than group interventions without individualization.
• Delivery of interventions: Face-to-face/in-person or telephone interventions are recommended; telephone interventions may be helpful when in-person contact is not possible; and web-based interventions can be considered for those with Internet capability.
• Number of sessions: Five to nine sessions of an intervention is suggested; interventions using an expansive range of sessions provided by ‘a family support organizer’ are not as helpful and might impede in some cases survivors and caregivers’ social functioning.

While there were not a sufficient number of studies for a statistical analysis to be valid, only descriptive statistics for these studies were reported. This is a limitation of this systematic review. The writing group concluded that due to the sparse number and methodological issues of these studies (e.g., weak designs, pilot studies with small sample size, treatment fidelity rarely discussed, outcome measures not fully described or incomplete, limited generalizability, etc.), it was difficult to identify the most effective intervention(s) for stroke survivor and caregiver outcomes with confidence.

Nonetheless, this scientific statement is an excellent critical analysis of quantitative intervention studies to provide evidence-based suggestions for using, and future development of, stroke family caregiver and dyad interventions. The authors suggested that future research should focus on high quality studies with attention to intervention delivery and sustainable outcomes. Studies are needed later in the stroke recovery process, as most current research is centered soon after stroke, and across longitudinal time spans to assess the sustainability of the interventions. Of note, the authors stated that face-to-face support group formats and the need for large number of in-person contacts may not be feasible for family caregivers. Furthermore, interventions targeted to the stroke survivor, the caregiver, or both, must be clearly described.

The writing group put some puzzle pieces together but leaves the puzzle unsolved as to what interventions can be used to design programs to achieve the best outcomes for stroke family caregivers and dyads. Two aspects not covered in the statement are: (a) what do caregivers and survivors say that they need, and (b) what do their experiences in dealing with stroke mean to them. Further investigation using an integrative review method is the only approach that allows for the combination of diverse methodologies (experimental and non-experimental / quantitative and qualitative research) to uncover that evidence. Knowing those answers may help solve the puzzle in designing these programs to attain best results for stroke family caregivers and dyads.

That said, the evidence in this scientific statement adds to the science related to caregiver and dyad interventions and resultant outcomes, providing a foundation for practice recommendations and future directions for healthcare professionals to effectively work with these survivors of stroke.