Relationships Between Caregiver Characteristics and Health-Related Quality of Life Among Youth with Spinal Cord Injury

Abstract

Past research has found a relationship between the mental health of parental caregivers and their children with spinal cord injury (SCI), but little is known about how other aspects of caregiver health and functioning impact health-related quality of life (HRQOL) of youth. The purpose of this study was to explore the importance of caregiver mental health, physical health, burden, and problem-solving skills in relation to children's physical and psychosocial HRQOL. Forty youths with SCI ages 7 to 17 years completed the PedsQL; primary caregivers completed standardized measures of mental and physical health, burden, and problem solving. We evaluated 2 hierarchical linear regression models predicting children's physical and psychosocial HRQOL. The 40 youths were an average of 11.48 years ( = 3.21), 62.5% were male, and 80% Caucasian. They had been injured an average of 6.90 years ( = 3.92); 75% had paraplegia, and 61.5% had complete injuries. Most caregivers were mothers (85%), were married (60%), and had at least some college education (87.5%). Univariate analyses revealed that caregiver problem solving alone was related to children's physical HRQOL, and caregiver mental health, burden, and problem solving were related to children's psychosocial HRQOL. Regression analyses controlling for child age and injury level revealed effective caregiver problem solving ( < .01) was significantly related to greater child physical (Model = 0.440) and psychosocial (Model = 0.547) HRQOL. Although relationships should be explored longitudinally with larger samples, results indicate caregiver problem solving may be a reasonable target for intervention to improve HRQOL among youth with SCI.

It is a marathon rather than a sprint: an initial exploration of unmet needs and support preferences of caregivers of children with SCI

“…Identified secondary stressors included impacts on the family (including balancing roles and emotional distress), social networks, financial stability, and the caregivers' own self-care. Data also highlighted support from both professionals and peers as resources that could potentially serve as mediators between stressors and caregiver well-being; this builds on past research that has identified the importance of caregiver problem solving skills [3,22]. Fleshing out these components of stress theory model in the specific context of caregiving and pediatric SCI can help lead to the development of comprehensive models of intervention to support caregivers of youth with SCI.…”

“…Challenges associated with caregiving across a variety of chronic illnesses and disabilities are widely documented and include the toll on caregiver physical and emotional health and quality of life (QOL) [2]. Attending to the complex health and unmet needs of caregivers is vital to the overall health of the caregiver, as well as the functioning of the child and the entire family unit [3][4][5][6][7]. Lazurus and Folkman's stress and coping model [8] and Pearlin and colleagues' stress process model [9,10] examine the nature of stressors and how internal resources (e.g., coping) and external resources (e.g., social support) can influence how stress impacts health and well-being.…”

“…For instance, SCI caregiving has been associated with elevated depressive and anxiety symptoms, marital satisfaction, and QOL for the caregiver [12][13][14][15][16][17][18][19]. Further, the mental health of caregivers of youth with SCI has been found to predict child mental health, physical health, adjustment to disability, and QOL [3,15,20]. Among families with pediatric SCI, reciprocal relationships have been found between caregiver and child mental health [20], caregiver and youth post-injury post-traumatic stress disorder [14], and caregiver mental health and child healthrelated QOL (HRQOL) [21].…”

“…For example, caregiver tendencies to solve problems impulsively and carelessly predicted lower acceptance of disability among adults with SCI at time of discharge and the occurrence of pressure sores post-discharge [22]. In addition, effective caregiver problem solving predicted increased HRQOL of their children with SCI [3].…”

Perspectives on caring for the child and the caregiver

“…Research shows the connection between caregiver wellbeing (physical and mental) and child functioning. 4 Consequently, failure to detect and address caregiver and family distress may lead to further decline in the caregiver, child, and family placing additional burden on the local community and larger healthcare system. As professionals, we are in a unique position with families when caring for their child; we are bestowed with long-term trust, affording us opportunities to identify caregiver and family distress, provide support and guidance, and monitor change over time.…”