Improving the quality of life of caregivers of persons with spinal cord injury: a randomized controlled trial.

Persons with spinal cord injury (SCI) are typically cared for at home by family members who are responsible for providing a wide range of services, some of which were formerly delivered by traditional health care providers. Although it is generally recognized that caregivers of individuals with chronic illnesses and disabilities experience high levels of psychiatric and physical morbidity (Schulz, O’Brien, Bookwala, & Fleissner, 1995; Schulz & Martire, 2004; Schulz, Newsom, Fleissner, deCamp, & Nieboer, 1997; Schulz et al., 1995; Schulz & Quittner, 1998), including increased risk of mortality (Schulz & Beach, 1999), caregivers of individuals with SCI may be at even greater risk of negative outcomes because of the unique challenges of caring for an individual with SCI and the long duration of the caregiving career. Researchers consistently report elevated levels of physical stress, emotional stress, burnout, fatigue, anger and resentment, and depression among caregivers of persons with SCI (Boschen, Tonack, & Gargaro, 2005; Dreer, Elliott, Shewchuk, Berry, & Rivera, 2007; Elliott & Shewchuk, 1998; Elliott, Shewchuk, & Richards, 2001; Lucke, Coccia, Goode, & Lucke, 2004; Shewchuk, Richards, & Elliott, 1998; Weitzenkamp, Gerhart, Charlifue, Whiteneck, & Savic, 1997). Caregivers providing support to older adults with SCI may experience particularly acute negative health effects because the older individual with SCI poses unique challenges brought about by the combined effects of aging and injury. The overwhelming evidence on the health effects of caregiving and the high costs of institutional care have spawned numerous studies aimed at testing interventions to improve health outcomes of caregivers and help them maintain their relative at home. The vast majority of this literature has focused on caregivers providing support to older adults with chronic disease-related disability, particularly those suffering from Alzheimer’s disease (Pinquart & Sorenson, 2003; Schulz, Martire, & Klinger, 2005; Selwood, Johnston, Katona, Lyketsos, & Livingston, 2007). With the exception of one recently published randomized trial (Elliott & Berry, in press), there exist no other well-controlled intervention studies for caregivers of individuals with SCI, even though researchers have been calling for such studies for more than a decade (Boschen et al., 2005; Dreer et al., 2007; Elliott & Shewchuck, 1998; Lucke et al., 2004; Rodgers et al., 2007; Sheija & Manigandan, 2005). The study by Elliott and Berry (in press) showed that brief problem-solving training significantly decreased dysfunctional problem solving among caregivers but had little impact on other outcomes, possibly due to the brevity of the intervention and/or the small sample size. The primary purpose of this article is to report the results of a randomized clinical trial designed to improve the quality of life of caregivers of individuals with SCI. We compare two active intervention conditions with each other (caregiver-only intervention vs. a dual-target intervention) and to an information-only control group. The caregiver-only intervention provided caregivers with enhanced access to resources, education and skills training, strategies for improving self-care and emotional well-being, and social support. The dual-target intervention provided support to both the caregiver and individual with SCI. Our approach to developing the interventions for this study was guided by both theory and extant research on caregiver interventions. Modeled after the successful REACH intervention trial for caregivers of patients with dementia (Belle et al., 2006), our starting point was the assumption that caregiving presents multiple challenges at varying levels of intensity that are not easily addressed. As a result, there is no single, easily implemented, and consistently effective method for achieving clinically significant effects among caregivers or care recipients (Schulz et al., 2002; Selwood et al., 2007). Most existing studies target a single problem such as depression or burden or use a multicomponent approach that combines educational components with strategies for enhancing problem-solving skills and/or managing emotional responses to caregiving challenges (Schulz, 2000; Sorensen, Pinquart, & Duberstein, 2002). Although we subscribe to the multicomponent approach to caregiver interventions, we diverge from the existing literature in several respects. First, we believe a “one size fits all” approach to caregiver interventions is likely to be ineffective. Because of the diversity of challenges inherent in the caregiving situation, interventions need to allow for some degree of tailoring to meet the specific needs of the individual. Thus, we subscribe to a structured—but at the same time, tailored—approach to delivering interventions that are responsive to individual needs. Second, we believe that there are important synergies to be attained by simultaneously treating the caregiver and care recipient, a relatively unexplored area in the caregiving intervention literature (Martire, Lustig, Schulz, Miller, & Helgeson, 2004). For individuals with severe disabilities embedded in supportive personal relationships, it is important to consider the reciprocal impact that providers and receivers of care have on each other (Bookwala & Schulz, 1996). Psychosocial interventions targeting both patient and family caregiver may have added benefit as compared to interventions aimed at only one of these individuals. While both types of interventions may improve the emotional well-being and health behaviors of either individual, dyadic intervention has greater potential due to its effects on factors such as effective support seeking and support provision within the dyad (Martire & Schulz, 2007). A more specific conceptual model illustrating our approach to treatment in the current study is illustrated in Figure 1. The left half of the panel describes a stress-health model applied to the care recipient, while the right half illustrates how recipient disability affects caregiver outcomes (Schulz & Williamson, 1993; Schulz, 2000). In contrast to most caregiving analyses, this model specifies important reciprocal relations between care recipient and caregiver in terms of the perception of and the emotional and behavioral response to stress, as well as reciprocal effects of illness. The bolded arrows in Figure 1 contrast the hypothesized impact of dual-target versus caregiver-only interventions. One of our central predictions is that caregiver outcomes will be enhanced in the dual-target treatment condition when compared to a traditional caregiver-only treatment condition and that both active treatments will be superior to the control condition. The synergistic effects of the dual-target condition should also be evident in analyses that focus on the dyad as the unit of analysis (i.e., a composite measure that reflects the impact of the intervention on the dyad as a unit). Figure 1 Conceptual model for stress-health process applied to care recipients and caregivers; hypothesized intervention targets of dual-target and caregiver-only interventions.