Parental Perceptions of Child Vulnerability in Families of Youth With Spina Bifida: the Role of Parental Distress and Parenting Stress

Driscoll, Colleen F Bechtel; Stern, Alexa; Ohanian, Diana M.; Fernandes, Nerissa; Crowe, Autumn N; Ahmed, Sana; Holmbeck, Grayson N.

doi:10.1093/jpepsy/jsx133

Cited by 10 publications

(9 citation statements)

References 45 publications

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“…In this cohort, most parents, including the three mothers that were diagnosed with mental health issues, reported adjusting adequately to their new situation, regardless of the individual outcome. Hope, parenting satisfaction, income, marital adjustment, economical resources and (social) support are factors improving parental psychological adjustment in parents of children with SB, in contrast to disability related stress, negative family impact and negative coping strategies 41 . In this cohort, parental hopes, parenting satisfaction, and their social support network may have positively contributed to this early adjustment.…”

Section: Discussionmentioning

confidence: 72%

“…Earlier studies have reported depression and anxiety in patients undergoing fetal diagnosis or receiving fetal therapy, suggesting that women underdoing MFS require appropriate follow‐up and support to detect increased risks of mood and anxiety disorders 37‐39 . This was already the case in women with fetal SB in the pre‐fetal surgery era, 40,41 to which the stress of the MFS and potential complications of prematurity is now added.…”

Section: Discussionmentioning

confidence: 99%

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‘We did everything we could’– a qualitative study exploring the acceptability of maternal‐fetal surgery for spina bifida to parents

Crombag

Sacco

Stocks³

et al. 2021

Prenatal Diagnosis

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Objective: To explore the concepts and strategies parents employ when considering maternal-fetal surgery (MFS) as an option for the management of spina bifida (SB) in their fetus, and how this determines the acceptability of the intervention. Methods:A two-centre interview study enrolling parents whose fetuses with SB were eligible for MFS. To assess differences in acceptability, parents opting for MFS (n = 24) were interviewed at three different moments in time: prior to the intervention, directly after the intervention and 3-6 months after birth. Parents opting for termination of pregnancy (n = 5) were interviewed only once. Themes were identified and organised in line with the framework of acceptability. Results:To parents opting for MFS, the intervention was perceived as an opportunity that needed to be taken. Feelings of parental responsibility drove them to do anything in their power to improve their future child's situation. Expectations seemed to be realistic yet were driven by hope for the best outcome. None expressed decisional regret at any stage, despite substantial impact and, at times, disappointing outcomes. For the small group of participants, who decided to opt for termination of pregnancy (TOP), MFS was not perceived as an intervention that substantially could improve the quality of their future child's life. Conclusion:Prospective parents opting for MFS were driven by their feelings of parental responsibility. They recognise the fetus as their future child and value information and care focusing on optimising the child's future health. In the small group of parents opting for TOP, MFS was felt to offer insufficient certainty of substantial improvement in quality of life and the perceived severe impact of SB drove their decision to end the pregnancy. Key pointsWhat's already known about this topic? � Maternal-fetal surgery for open spina bifida has the potential to improve long-term outcomes but at significant procedure-related fetal and maternal risk; 910 -Prenatal Diagnosis.

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Section: Discussionmentioning

confidence: 72%

Section: Discussionmentioning

confidence: 99%

‘We did everything we could’– a qualitative study exploring the acceptability of maternal‐fetal surgery for spina bifida to parents

Crombag

Sacco

Stocks³

et al. 2021

Prenatal Diagnosis

View full text Add to dashboard Cite

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“…Participants were recruited for an ongoing longitudinal study examining family and peer relationships, neuropsychological functioning, and psychological adjustment of families of youth with SB. 8 The present study’s analyses focus on the first three time points: Time 1(baseline; youth age 8–15 years), Time 2 (2 years after baseline; youth age 10–17 years), and Time 3 (4 years after baseline; youth age 12–19 years). Families of youth with SB were recruited from four Midwestern hospitals, a statewide SB association, in person at regularly scheduled clinic visits, and through recruitment letters.…”

Section: Methodsmentioning

confidence: 99%

“…Parent personal distress is operationalized as the degree of overwhelming sadness, anxiety, or pain experienced by an individual (who is also a parent). 8–9 Parents of youth with SB have been found to experience clinical levels of personal distress. 10 However, it is unclear how the experience of personal distress by a parent affects youth adjustment, specifically HRQOL.…”

mentioning

confidence: 99%

“…Parenting stress is operationally defined as the mental or emotional strain or pressure an individual experiences as a direct result of being a parent. 8,12 This can include the stress a caretaker experiences due to enforcing bedtimes, preparing meals, or arranging after-school activities. Studies have found that more than one-third of mothers of youth with SB experience clinically significant levels of general parenting stress.…”

mentioning

confidence: 99%

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Parental Distress and Stress in Association with Health-Related Quality of Life in Youth with Spina Bifida: A Longitudinal Study

Driscoll

Buscemi

Holmbeck

2018

J Dev Behav Pediatr

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Objective This study examined associations between three distinct parent factors (parent personal distress, parenting stress, and spina bifida-specific parenting stress) and youth- and parent proxy-report of youth health-related quality of life (HRQOL) over time. Method Participants were recruited as part of a longitudinal study, and data were collected at three time points, spaced two years apart. Parents and youth completed questionnaires, and youth completed neuropsychological assessment tasks to determine youth IQ during home visits. Results Analyses revealed that higher levels of maternal SB-specific parenting stress were related to lower levels of youth-reported HRQOL at Time 1. Other parent factors were not associated with youth-report of HRQOL at the earlier time points, though higher levels of maternal SB-specific parenting stress and paternal parenting stress were associated with lower levels of youth HRQOL at Time 3. For mothers and fathers, increased parent personal distress, parenting stress, and SB-specific parenting stress were associated with decreased proxy-report of youth HRQOL. SB-specific parenting stress was consistently the most strongly associated to parent proxy-report of youth HRQOL. Conclusion Parenting stress and distress are important targets for interventions, and these interventions may improve youth outcomes, especially as youth age. Future research is needed to identify other factors influencing youth HRQOL over time.

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Parent stress for patients followed in a multidisciplinary spinal defects clinic.

Simpson¹,

Kenny²,

Wilson³

et al. 2020

Clinical Practice in Pediatric Psychology

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Objective:The primary aim of this study was to characterize parent-reported stress for parents of children being followed in a multidisciplinary spinal defects clinic. Method: Participants were drawn from clinical cases seen through a multidisciplinary outpatient spinal defects clinic between 2014 and 2017. Participants included 223 youth under 21 years old, diagnosed with spina bifida (SB) or a related neural tube defect, and their parents. Parent stress ratings were obtained for all participants as part of the standard care within the clinic using the Parental Stress Scale. Self-reported internalizing symptoms were measured for patients aged 12 and older (n ϭ 44) with the 9-item Pediatric Health Questionnaire and the 7-item Generalized Anxiety Disorder scale. Results: Contrary to our prediction, we found low levels of parent and adolescent distress in this population. An important finding was that adolescent internalizing symptoms showed a moderate to large association with parent-reported stress and in fact, predicted parent stress better than did any demographic or health-related variable. Child age was also found to correlate with parent-reported stress, and parents of older children reported on average more stress than did parents of younger children. Conclusions: The current findings mainly highlight resilience in this population but do indicate that parent stress and child internalizing symptoms for children with SB are linked and are likely to be a target for clinical management, similar to the case for children without chronic health conditions. Implications for Impact StatementThe current study highlights resilience in parents of children with a neural tube defect but does indicate that parent stress and child internalizing symptoms for children with a neural tube defect are linked and are likely to be a target of clinical management in a subset of this population. Additionally, it contributes to research investigating the efficacy of psychosocial screening tools in medical clinics and the benefits of multidisciplinary care for youth with neural tube defect.

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Parental Perceptions of Child Vulnerability in Families of Youth With Spina Bifida: the Role of Parental Distress and Parenting Stress

Abstract: For parents of youth with SB, personal distress, and parenting stress are related to parental perceptions of child vulnerability, and child age may moderate this relationship. Parental personal distress and parenting stress are important targets for future interventions.

Cited by 10 publications

References 45 publications

‘We did everything we could’– a qualitative study exploring the acceptability of maternal‐fetal surgery for spina bifida to parents

‘We did everything we could’– a qualitative study exploring the acceptability of maternal‐fetal surgery for spina bifida to parents

Parental Distress and Stress in Association with Health-Related Quality of Life in Youth with Spina Bifida: A Longitudinal Study

Parent stress for patients followed in a multidisciplinary spinal defects clinic.

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