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Approximately 800,000 new or recurrent strokes occur each year in the United States (Lloyd-Jones et al., 2010); about 550,000 survive. Most survivors return home with a family member, who suddenly assumes the caregiver role with great uncertainty (King, Shade-Zeldow, Carlson, Knafl, & Roth, 1995). Many caregivers feel unprepared for and overwhelmed by their caregiver role and the life changes that occur (Bakas, Austin, Okonkwo, Lewis, & Chadwick, 2002; Cameron & Gignac, 2008; Ilse, Feys, Wit, Putman, & Weerdt, 2008). Negative perceptions, stress, and depression are common and have potential to affect family interactions and the well-being and functioning of the stroke survivor and caregiver (Barskova & Wilz, 2007; Berg, Palomaki, Lonnqvist, Lehtihalmes, & Kaste, 2005; Hartke, King, Heinemann, & Semik, 2006; King, Shade-Zeldow, Carlson, Feldman, & Philip, 2002; King et al., 2001; Pinquart & Sörensen, 2007). Caregiver physical health issues, needs, and problems are common and contribute to negative outcomes (Bakas et al., 2002; Hartke & King, 2002; King & Semik, 2006; King et al., 2001; Murray, Young, Forster, Herbert, & Ashworth, 2006). Few studies have demonstrated efficacy in promoting psychosocial adaptation during transition to the caregiver role. Fewer still have demonstrated durable treatment effects. Consequently, the prevalence of depression in stroke caregivers remains high (30%–55%) (Berg et al., 2005; King, Hartke, & Denby, 2007; King et al., 2001; Visser-Meily, Post, de Port, Heugten, & Bos, 2008).
Depression and other negative outcomes have been associated with maladaptive coping, such as negative problem-solving and appraisals, and passive coping tendencies (Bakas & Burgener, 2002; Grant et al., 2006; King et al., 2001; Visser-Meily et al., 2008). Anxiety also is common (Dennis, O'Rourke, Lewis, Sharpe, & Warlow, 1998; Smith et al., 2004), but has received little attention. Contributing to distress are problems, such as the survivor's care, balancing care-related tasks and commitments, and managing their own emotions (Bakas et al., 2002; Grant, Glandon, Elliott, Giger, & Weaver, 2004; Haley et al., 2009; Hartke & King, 2002). Stress has contributed to physical health changes and injury (Hartke et al., 2006; Hayes, Chapman, Young, & Rittman, 2009), as well as increased risk for stroke among men, particularly African American men (Haley, Roth, Howard, & Safford, 2010). Little is known about the trajectory of stroke caregiver health over time (Han & Haley, 1999).
Reviewers of caregiver research concluded that the evidence did not support recommending a specific intervention for clinical practice (Boschen, Gargaro, Gan, Gerber, & Brandys, 2007; Eldred & Sykes, 2008; Visser-Meily, Heugten, Post, Schepers, & Lindeman, 2005). However, problem-solving or supportive treatments tend to result in more positive psychosocial outcomes (Dennis, O'Rourke, Slattery, Staniforth, & Warlow, 1997; Evans, Matlock, Bishop, Stranahan, & Pederson, 1988; Grant, Elliott, Weaver, Bartolucci, & Giger, 2002). Multicomponent counseling or counseling-education treatments that emphasize caregiver problems and needs may be most effective (Visser-Meily et al., 2005). Supporting this recommendation, a review of information-provision interventions reported no effect on mood (Smith, Forster, & Young, 2009). Research evidence supports the need for early interventions that coach stress management and are accessible to prevent chronic distress. Coping variables have been identified as a potential intervention target, as they have mediated relationships between background factors and distress (Haley et al., 1996; Morano & King, 2005).
Building on prior research, we tested a caregiver problem-solving intervention (CPSI) to reduce and prevent negative outcomes in the first year of caregiving, and to examine the role of coping in mediating caregiver outcomes. We hypothesized that: (1) the CPSI intervention would result in greater improvement in depressive symptoms, anxiety, caregiver preparedness, life change, and family functioning than a wait-list control (WLC) group during the first year caregiving and (2) caregiving appraisal and problem-solving would mediate outcomes. The exploratory question was Do the groups differ on perceived health over time?
A Stress and Coping Model (Moos & Schaefer, 1993) guided selection of the intervention and variables. The model proposes that personal factors influence responses to life crises and transitions. These combined factors influence adaptation directly and indirectly through mediators, such as cognitive appraisal and coping strategies (the coping process). The problem-solving intervention is intended to intervene at the mediator level to promote positive problem-solving, reduce threat appraisal, and manage stress.
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Although the primary hypothesis that the CPSI intervention would result in improved outcomes was not supported in the GCM analysis, there were several trends in the data that suggest a impact from the treatment program. The models indicated a better rate of change in depression, favoring the CPSI through 6 months in the unadjusted model. This pattern was similar for anxiety, preparedness, and life change. The study design and greater attrition in the CPSI may have contributed to the convergence of group scores after 6 months when 33 WLC caregivers accepted the optional post 6-month intervention (Figure 1). Among 121 study completers, significant results favoring the CPSI were observed for T2 change in depression, life change, and health. However, these gains faded by 6 months. The decrement in outcomes after 6 months (T3) suggests the need for a second wave of intervention with increased intensity, particularly for caregivers who remain distressed. The outcome may reflect a lack of sustained impact for a short-term intervention delivered at the beginning of a typically, changeable period of stress for caregivers. Stroke recovery is noteworthy for being lengthy and uncertain. Survivors and caregivers may defer painful conclusions about loss of independence and productivity until the promise of recovery through therapy begins to fade, often around 6 months. Caregiver stamina and the types of problems they face may fluctuate over a similar lengthy time course.
Our findings on family functioning contrast with the other studies that reported improved family functioning in caregivers receiving education-counseling or problem-solving treatment compared with controls in the first year post stroke (Clark, Rubenach, & Winsor, 2003; Evans et al., 1988). Clark et al. found no difference in depression and Evans et al., did not assess depression. Their use of family counselors as interventionists may have resulted in a greater emphasis on family issues than our treatment.
With few exceptions (Elliott, Brossart, Berry, & Fine, 2008; Grant et al., 2002; Rivera, Elliott, Berry, & Grant, 2008) stroke and other disability and cancer caregiver studies have not found treatment effects for emotional well-being (Bakas et al., 2009; Hartke & King, 2003; Perrin et al., 2010; Toseland, Blanchard, & McCallion, 1995; van den Heuvel et al., 2002). Similarly, physical well-being and health outcomes have not improved (Bakas et al., 2009; Grant et al., 2002; van den Heuvel et al., 2002). In the current study, which included problem-solving sessions on self-care and health, perceived health was significantly better in the treatment group in the short-term. Although we showed treatment effects for depression, life change, and perceived health, results must be viewed with caution because they were not sustained and were observed only in caregivers who completed all assessments. In contrast with our findings, preparedness has shown short-term improvement in problem-solving and needs-based interventions (Grant et al., 2002; Shyu, Chen, Chen, Wang, & Shao, 2008).
The second hypothesis regarding important mediators was partially confirmed. Threat appraisal and rational problem-solving mediated outcomes, such that higher threat effected greater depression, anxiety, worse life change, and lower preparedness, and lower rational problem-solving was related to poorer preparedness. The findings on threat were similar to our cross-sectional sample (N = 253) in which threat was related to greater anxiety, negative life change, and lower preparedness (King et al., 2010a). In contrast with two studies that showed greater posttreatment improvement in threat appraisal in treatment caregivers (Bakas et al., 2009; Northouse, Kershaw, Mood, & Schafenacker, 2005), our intervention had no between group effect on threat levels. Threat appraisal has a detrimental effect on mood, thus a greater emphasis on reducing fears for the future and increasing self-confidence may be needed. These findings suggest that addressing perceived threat and focusing on self-care and healthy behaviors could increase the impact of future early interventions.
Difficulties with recruitment and attrition in our study reflect the challenge of accessing this distressed group, who were enrolled during the most stressful time poststroke (King & Semik, 2006). Attrition is a major challenge because stroke caregivers enrolled during acute rehabilitation tend to drop out at high rates (Mant, Carter, Wade, & Winner, 1998; Teel, Duncan, & Lai, 2001). Survivor function was low at baseline and improved markedly by T2, nevertheless lower function contributed to increased depression and lower preparedness (Table 3). Improved survivor function may have contributed to attrition, if those caregivers were less distressed and no longer saw a need for the intervention. As noted in the intervention evaluation by caregivers who dropped out, they did not perceive the treatment as very helpful. However, most of them completed only one session. The inclusion in the GCM analysis of caregivers who completed few or no treatment sessions likely contributed to the lack of significant findings. Depression was not related to attrition; however, this may be because the severity and rate of depression are much higher than other caregiver studies. Only eight percent had scores less than 12. Attrition is as high as 30%–50% in depression trials (Casacalenda, Perry, & Looper, 2002). Moreover, a higher percentage of low income Black caregivers dropped-out. A recent review indicated that despite greater depression in poor, minority women, they are less likely to seek and remain in treatment (Grote, Zuckoff, Swartz, Bledsoe, & Geibel, 2007). Those authors suggested the addition of engagement interviews and motivational interviewing to improve retention. Such techniques could be useful in developing a strong, supportive relationship with a caregiver to instill hopefulness that participation in an intervention to manage stress would be time well spent.
The sample was primarily female, fairly well-educated, spousal caregivers, limiting generalization to similar caregivers. The findings and related literature suggest that interventions for stroke caregivers may need to include a motivational element to overcome reluctance to obtain help and to take time to continue to access it. In addition, there is a need for more sustained contact over time to build and maintain relationships and promote caregivers' motivation to care for themselves (Visser-Meily et al., 2005). High attrition may have introduced bias into the GCM analysis because attrition was significantly higher in the CPSI group. Depression tended to improve for both groups over time; however, the highest depression scores (baseline scores) for drop outs were used in the analysis. Intention to treat analyses were not found for stroke caregiver interventions, thus it is difficult to compare those findings with others. Although, the postintervention improvements in life change, depression, and perceived health are encouraging, they were not maintained and all the hypothesized mediator effects and effects for other outcomes were not demonstrated. These findings argue for refinements to strengthen the intervention and to develop innovations to improve retention and sustain improvement.
The 1 year follow-up provides evidence that caregiver coping and adaptation continue to fluctuate in the long-term. This suggests that caregivers need to be informed early that feelings of stress may vary over a considerable period of time and warrant attention throughout the first year of stroke recovery. The knowledge that White race and less than high school education contribute to negative outcomes for family functioning, and anxiety, respectively, can alert clinicians to potential adaptation issues. The moderators (health, stress, resource use, and survivor function), and mediators (threat and positive problem-solving) that were related to outcomes; all have potential for change when targeted in interventions. The findings that threat and positive problem-solving mediate adaptation, provides valuable direction for interventions to increase caregiver skills in managing problems and improving their well-being. Findings also suggest the characteristics of at risk caregivers in need of early referral for mental health intervention. The finding of a relationship between race, education, resource use, stress, and baseline health and outcomes may help to refine future treatment programs.