Impact of Spina Bifida on Parental Caregivers: Findings from a Survey of Arkansas Families

Abstract

The well-being of caregivers of children with spina bifida and other conditions is an important topic. We interviewed the primary caregivers of 98 children aged 0-17 years with spina bifida sampled from a populationbased birth defects registry in Arkansas and the caregivers of 49 unaffected children. Measures of caregiver wellbeing were compared between the groups and by level of lesion (sacral, lower lumbar, and upper lumbar/thoracic). We performed linear and logistic regression analysis to test the associations controlling for other characteristics. Among caregivers of children with spina bifida, the average number of hours of sleep was significantly less than reported by other caregivers and was associated with lesion level among children less than 7 years of age. Significant associations, often varying by child age, were also found for the caregiver's reports of lower Quality of Well-Being (QWB) score, often feeling blue, rarely feeling happy, fair or poor health, lack of leisure days, and not hosting friends, but no significant association was found with not visiting friends. The intensive long-term care required by children with spina bifida, particularly by those with higher lesions, can negatively impact caregiver health and well-being. Support for these caregivers is needed.

Biopsychosocial risks of parental care for high-risk neonates: implications for evidence-based parental counseling

“…The functional status of the child, the caregiving load and family function had a direct impact on the physical health of the parental caregivers. [10][11][12][13] The increased exposure to health-care professionals may benefit these parents, providing them with opportunities to discuss their ailments and allowing for earlier diagnosis.…”

“…Parents experience higher rates of depression, anxiety and symptoms of PTSD. 9,10,[12][13][14][15]17,21,23,28,29 However, there is evidence of personal growth in the face of adversity as these symptoms may improve with time. Tedeschi and Calhoun 33 , in creating a conceptual framework for the study of post-traumatic growth, state that a life crisis that challenges a person's world view is a necessary first step.…”

“…11 Similarly, an Arkansas study found that parental caregivers of children with spina bifida slept less and reported poorer overall well-being when compared with a group of families with children without spina bifida, findings that correlated directly with the level of the spinal lesion. 12 Finally, a group at Massachusetts General Hospital, in a study of mothers of technology-dependent children, found that these mothers had increased complaints of pain and lower vitality when compared with a group of mothers of recently hospitalized but otherwise healthy children. 13 Psychological health A group from the University of Wisconsin-Milwaukee examined symptoms of post-traumatic stress disorder (PTSD) in mothers of premature and term infants requiring NICU care.…”

“…13 Parental caregivers in the Arkansas study also reported more depressive symptoms versus the comparison group. 12 Social health A descriptive study of families of ventilator-assisted children by Carnevale et al 29 found that families almost universally experienced a phenomenon the authors described as 'Daily Living with Distress and Enrichment.' Parents wrestled with the weight of their responsibilities, the emotional strain, feeling they never really had a free choice when making life and death decisions for their children, the constant specter of death and the issues of their child's dependence.…”

“…When categorized by the level of the spinal lesion, there was a direct correlation with the level of the spinal lesion and the incidence of divorce, although the difference was not statistically significant. 12 The Ontario-based study found that primary caregivers of children with cerebral palsy were less likely to work for pay and, if they did work, were less likely to work full time. Not surprisingly, they were also more likely to report caring for the family as their primary occupation and reported lower incomes.…”