Reducing Depression in Stroke Survivors and their Informal Caregivers: A Randomized Clinical Trial of a Web-Based Intervention

Stroke is the major cause of long-term disability and rehabilitation in the United States (American Stroke Association, 2011). After hospitalization and rehabilitation, 80% of stroke survivors (SSs) return home with care largely provided by family caregivers (CGs; Eldred & Sykes, 2008). Many CGs are older wives with age-related infirmities that make being a CG more difficult (Hickenbottom et al., 2002). These wives often become isolated and overprotective of the disabled spouse (Michallet, Tetreault, & Le Dorze, 2003). Both SSs and their informal CGs are at risk for depression. Recently, for instance, it was found that the amount of spouses with depressive symptoms ranged from 68 percent immediately after stroke onset to 50 percent at three years poststroke (Visser-Meiley et al., 2009). Depression is also the most common post-stroke psychiatric condition among SSs. In their systematic analysis of the world’s literature on post stroke depression, Robinson and Spalletta (2010) noted that prevalence rates for minor and major depression combined are about 23.0 percent in community settings and about 47.9 percent in outpatient settings (up to three years post stroke). However, few depressed SSs receive relevant treatment (Okan et al., 2004). It has been shown repeatedly that the quality of informal care influences depressive onset in care recipients (Matire, Stephens, Druley, & Wojno, 2002; Newsom & Schulz, 1998; Williamson & Schaffer, 2001). Misguided support impedes rehabilitation for chronic illness and leads to excess disability (Cimarolli, Reinhardt, & Howowitz, 2006). Even actions meant as supportive are often viewed negatively by chronically ill persons (Matire et al., 2002). According to Newsom (1999), 33%-66% of care recipients (CRs) suffer from depression and unfavorable self-attributions due to poor informal care. In turn, Christie et al. (2009) argue that assessments of the quality of informal care must consider CG sensitivity to the CR’s psychosocial needs for respect and pleasurable activities. Many CGs of stroke patients, specifically, report feeling that they are not always understanding enough of the SS’s needs (Hinojosa & Rittman, 2007). In turn, poor quality of spousal care (i.e., overprotection, patronization, and unnecessary care) predicts greater depression and less mastery in SSs (Palmer & Glass, 2003; Perrin, Heesacke, Hinojosa, Uthe & Rittman, 2009). Furthermore, CG depression predicts potentially harmful behaviors even when demographic variables, pre-illness CG-SS relationship quality, and illness severity are controlled (Williamson & Shaffer, 2001). Risk for depression in both members of the CG-SS dyad suggests the need for interventions to improve psychological well-being of SS and CG alike (McCarthy, Powers, & Lyons, 2011). Matire and Schulz (2001) claim that such interventions should target CGs by alleviating burden and educating them to provide optimal supportive assistance. Similarly, Perrin et al. (2009) maintain that “because the functioning of individuals with stroke is intimately linked to the mental health of stroke caregivers, these interventions could improve the way that caregivers provide informal care and ultimately contribute to more effective rehabilitation of individuals with stroke” (p. 146). Nevertheless, intervention studies along these lines are scarce. Reviews of intervention research involving stroke CGs reveal that few randomized clinical trials (RCT) have been published where the intervention involved anything more than information and education (Brereton, Carroll & Barnston, 2007; Eldred & Sykes, 2008; Redfern, McKevitt, & Wolfe, 2006). Also, insufficient evidence exists to confirm the efficacy of interventions for stroke CGs. Extant studies vary greatly in approach, suffer methodological flaws, and are of low quality. Nevertheless, Eldred and Sykes (2008) concluded that psychosocial interventions for stroke CGs (especially if delivered by innovative technology) may offset the negative impact of informal caregiving and prevent decline in SSs’ adjustment. We describe the development and evaluation of a web-based psychoeducational intervention for CGs designed to reduce depression in both male SSs and their spouses. This particular dyadic configuration was selected due to the tendency of wives to isolate themselves and to demonstrate overprotection towards a disabled spouse (Michallet et al., 2003). The intervention, based on the prominent Stress Process Model (SPM; Pearlin, Aneshensel, Mullan, & Whitlatch, 1995), contained five interrelated components for countering depression within the CG-SS dyad (Table 1). A basic SPM principle is that the effect of stressors on psychological distress is mediated by the key psychosocial resources of mastery, self-esteem, and social support. Although originally designed for dementia care, the SPM’s underpinnings in a stress and coping framework make it applicable to multiple chronic illnesses. Table 1 Summary of Components included in the Intervention Condition Following the SPM, we deduced that CG social support, self-esteem, and mastery would be enhanced by informational, emotional, and instrumental support from both a professional helper and peers. In turn, these positive changes in CG coping resources should reduce CG depression. Also, the information and skills imparted to the CGs would enable them to give care in ways that increase the perceived emotional support, autonomy, and self-esteem of the SSs. Positive changes in these outcomes are then expected to diminish SS depression. Thus, this intervention is innovative in attempting to increase SSs’ psychological well-being by encouraging CGs to provide optimal care. Using web-base conferencing and video education is another innovation, given that few studies have evaluated the efficacy and utility of these modalities with family CGs (see, for review, Glueckauf & Noel, 2011). Only one study of an online support program for CGs of SSs has been reported to date (Pierce, Steiner, Khuder, Govoni, & Horn, 2009). That intervention encompassed four components delivered to CG: (1) linked Web sites about stroke and caregiving; (2) educational information or tips customized to CG needs; (3) an email forum to ask relevant professionals private questions; and (4) non-structured email discussions facilitated by a nurse. The intervention did not alter CGs’ baseline depression and its impact on SSs’ mental health was unexamined. To our knowledge, no study has investigated the efficacy of a web-based intervention on the well-being of CGs and SSs concurrently. Within an RCT investigation, our goal was to reduce depression as the primary outcome in both members of the CG-SS dyad by encouraging CGs to better attend to their emotional needs, as well as to those of the SS. We hypothesized that outcomes for CGs and SSs receiving the intervention would be superior when compared to dyads assigned to an information only control condition. According to the SPM (Pearlin et al., 1995), we further hypothesized that increases in mastery, self-esteem, and social support would be associated with decreased depression for SSs and CGs alike. The conditions were also compared on measures of treatment credibility, effort, and perceived benefit.