Academic journal article The Journal of Rehabilitation

Psychological Functioning in Caregivers of Children and Adolescents Living with Spinal Cord Injuries and Disorders in Colombia, South America

Academic journal article The Journal of Rehabilitation

Psychological Functioning in Caregivers of Children and Adolescents Living with Spinal Cord Injuries and Disorders in Colombia, South America

Article excerpt

Pediatric injuries and disorders of the spinal cord are relatively rare, but profoundly impairing conditions that can have a pervasive impact on the lives of children and families (Proctor, 2002; Wallingford, Niswander, Shaw, & Finnell, 2013). Spinal cord injury (SCI) is diagnosed when a traumatic insult causes tearing, bruising, or crushing of the delicate nerves of the spinal cord, causing loss of voluntary and involuntary motor function below the level of lesion (National Institute of Neurological Disorders and Stroke [NINDS], 2012). In spina bifida (SB), sensory and motor impairments result from malformation of the spinal cord in utero (Fletcher & Brei, 2010; Wallingford, Niswander, Shaw, & Finnell, 2013). Although spinal cord disorders (SCD) are heterogeneous conditions wherein outcomes greatly depend upon the level and severity of lesion, most pediatric SCD patients will experience permanent functional limitations that necessitate long-term support (McDonald & Sadowsky, 2002; Proctor, 2002; Rofail, Maguire, Kissner, Colligs, & Abetz-Webb, 2013). Parents and other family caregivers often assume the bulk of these duties.

All children require support from caregivers, but raising a child with SCD can be particularly intensive. For example, physical limitations may mean that even older children with SCD need help with toileting, washing, self-care, positioning, ambulation, and other activities of daily living (Fletcher & Brei, 2010; Rofail, Maguire, Kissner, Colligs, & Abetz-Webb, 2013; Wallingford et al., 2013). Furthermore, prevention of potentially serious secondary complications associated with SCD (e.g., urinary tract and kidney infections, pressure ulcers) can require extensive care regimens that are too complex and demanding for youth to perform autonomously (Rofail et al., 2013; Vogel, Hickey, Klaas, & Anderson, 2004). As a result, parents of children with SCD report substantial caregiving burden, little leisure time, and feelings of always being "on call" for assistance (Havermans & Eiser, 1991; Loebig, 1990; Rofail et al., 2013). In addition to caregiving burden, pediatric SCD caregivers may struggle with grief, trauma, and guilt about their child's condition, as well as concerns about how to care for a child with such serious medical needs (Anderson, 2003; Grosse, Flores, Ouyang, Robbins, & Tilford, 2009; Rofail et al., 2013). As a result of these factors, several researchers have sought to investigate psychological disorders in this population.

Although relatively little research has reported prevalence rates for specific psychological disorders among caregivers of children with spinal cord lesions, investigations using disorder-specific instrumentation have identified elevated levels of depression (21-22%) and anxiety (16-20%) in parents of children with spinal cord injury (Kelly et al., 2011; Kelly et al., 2012). In terms of spina bifida caregivers, a recent meta-analysis indicated that up to 46% of mothers and 28% of fathers meet criteria for at least one psychiatric diagnosis (Holmbeck & Devine, 2010; Vermaes, Janssens, Bosman, & Gerris, 2005). In addition, caregivers of children with physical disabilities have also reported poorer physical health, less sleep, social support, and leisure time as compared to parents of healthy children (Grosse et al., 2009; Rofail et al., 2013). These findings suggest caring for a child with SCD may impact health-related quality of life (HRQOL), a construct that encompasses both physical and emotional well-being (Hammell, 2004). Unfortunately, pediatric SCD caregivers with few financial resources may be at risk for particularly poor outcomes (Raina et al, 2005; Savage & Bailey, 2004; Vermaes et al, 2005).

Pediatric SCD can confer a significant financial burden on caregivers (Rofail et al, 2013; Vitale, Goss, Matsumoto, & Roye, 2006). Children with SCD require ongoing medical and rehabilitative services to maintain health, minimize secondary complications, and promote optimum functional abilities (Arango-Lasprilla et al, 2010a, b; Meade et al, 2004; Ouyang, Grosse, Armour, & Waitzman, 2007; Rofail et al, 2013). …

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