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Understanding Disease Aetiology and Related Needs Knowledge of Parents of Children With Spina Bifida
Olivia E Clark1, Madeleine C Suhs1, Taylor L Hilderbrand1
1Department of Psychology, Loyola University Chicago, Chicago, Illinois, USA.
Insights
Parental knowledge of spina bifida (SB) varies, with some understanding of its problems but gaps in knowing its causes. Education is crucial for families navigating SB challenges.
Area of Science:
- Pediatric Health
- Neuroscience
- Family Medicine
Background:
- Spina bifida (SB) is a central nervous system birth defect impacting family functioning and requiring extensive medical care.
- Parental knowledge of a child's medical condition is vital for effective health management and advocacy.
- Limited research exists on parental understanding of spina bifida in youth.
Purpose of the Study:
- To identify parent perceptions and knowledge of the causes and problems associated with spina bifida (SB).
- To inform targeted interventions for families of youth with SB.
Main Methods:
- 140 parents of youth with SB completed open-response questions on SB problems and causes.
- A modified Brief Illness Perception Questionnaire was used.
- Content analysis evaluated the qualitative data to identify key themes.
Main Results:
- Parents demonstrated varied knowledge of SB causes and associated medical/nonmedical problems.
- Perceived problems included physical (e.g., toileting, ambulation), neurocognitive (e.g., executive function), and caregiver burden.
- Misunderstandings regarding SB etiology, such as environmental toxins, were identified.
Conclusions:
- Parental focus was on salient medical and nonmedical problems, with noted gaps in understanding etiology.
- Individualized, developmentally appropriate education from diagnosis through young adulthood is recommended for families.
- Future research should explore predictors of parental knowledge and perceptions regarding SB.
Objective:
Spina bifida (SB), a birth defect impacting the central nervous system, may disrupt family functioning, elevate risk for psychosocial concerns in family members, and require extensive medical management. Parental knowledge of their child's medical condition supports parents in managing youth health needs, advocating for their child and responding to complications. Little is known about parent understanding of youth SB. The purpose of this study is to identify parent perceptions and knowledge of aetiology and problems associated with SB to support opportunities for intervention in families of youth with SB.
Methods:
Parents of 140 youth with SB completed open-response questions as part of a modified version of the Brief Illness Perception Questionnaire regarding perceptions of (1) problems associated with SB and (2) causes of SB. Researchers evaluated secondary survey-elicited data using a content analysis approach to identify themes.
Results:
Parents exhibited varying levels of knowledge of SB aetiology, including knowledge of several salient medical and nonmedical problems associated with their child's condition. Perceptions of problems included physical (e.g., toileting, and ambulation) and neurocognitive (e.g., executive function) concerns, as well as family and caregiver functioning (e.g., caregiver burden) challenges. This study highlighted some areas of misunderstanding with respect to knowledge of aetiology (e.g., environmental toxins).
Conclusions:
Parent perceptions of SB focused on a variety of salient medical and nonmedical problems. In addition, gaps in knowledge of condition aetiology were highlighted. Medical providers and paediatric psychosocial care providers should provide individualized and developmentally appropriate education regarding SB from diagnosis through young adulthood to support family adjustment, caregiver well-being and tailored medical management. Future research should examine predictors of parent knowledge and perceptions.
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