This study identified several mechanisms through which CHCs affect siblings. Future research should focus on parent-child dynamics and the longitudinal development of positive self-attributes and internalizing problems as well as on identifying what works in services for siblings of children with CHCs.
Background: Spina Bifida (SB) is the second most common birth defect worldwide. Since the chances of survival in children with severe SB-forms have increased, medical care has shifted its emphasis from life-saving interventions to fostering the quality of life for these children and their families. Little is known, however, about the impact of SB on family adjustment. Reviewers have struggled to synthesize the few contradictory studies available. In this systematic review a new attempt was made to summarize the findings by using meta-analysis and by delimiting the scope of review to one concept of family adjustment: Parents' psychological adjustment. The questions addressed were: (a) do parents of children with SB have more psychological distress than controls? (b) do mothers and fathers differ? and (c) which factors correlate with variations in psychological adjustment?
Mobility, bladder and bowel dysfunctions in school-aged children with SB represent ongoing stressors for parents. Parents' intrapersonal resources of positive affectivity, however, are more important determinants of parental adjustment to SB than the child's physical dysfunctions.
Extending the assessment of psychosocial problems with routine screening on patient-reported outcomes, using validated questionnaires, could be of additional value in tailoring care to the needs of the individual child and parents.
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