Perceived mental health in parents of children with rare congenital surgical diseases: a double ABCX model considering gender

Boettcher, Johannes; Zapf, Holger; Fuerboeter, Mareike; Nazarian, Rojin; Reinshagen, Konrad; Wiegand-Grefe, Silke; Boettcher, Michael

doi:10.1186/s13023-021-01998-9

Cited by 12 publications

(12 citation statements)

References 35 publications

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“…For example, we anticipated that lower family income would be associated with higher stress, anxiety, and depression scores, whereas more physical activity would be associated with have lower stress, anxiety, and depression scores. Given evidence of gender‐specific stress vulnerability (Boettcher et al., 2021 ; Mao & Agyapong, 2021 ) and recent studies suggesting that mothers have been especially impacted by pandemic‐related challenges (Davenport et al., 2020 ; Martucci, 2021 ), we specifically hypothesized that mothers would fare worse than fathers with respect to stress, anxiety, and depression. In addition, consistent with the social determinants model suggesting that the cumulative effects of social risks increase across the lifespan, we hypothesized that there would be stronger relationships between social determinants and anxiety for adolescents compared with younger children.…”

Section: Introductionmentioning

confidence: 99%

Parental mental health and child anxiety during the COVID‐19 pandemic in Latin America

Brik

Williams

Esteinou

et al. 2022

Journal of Social Issues

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This study examined parents’ ( N = 10,141, 64% women) reports of their and their childrens’ depression, anxiety, and stress in Brazil, Mexico, Colombia and Argentina. The data come from the COVID‐19 Family Life Study (Ben Brik, 2020) and cohort recruited between April and December 2020. Participants completed online surveys that included the DASS‐21 and the Revised Children's Manifest Anxiety Scale. Our findings indicate that socio‐economically disadvantaged families fared worse in mental health during the early phases of the COVID‐19 pandemic compared with families with more social and economic resources. Mothers reported higher anxiety, depression, and stress compared with fathers. Parents of adolescents and adolescents fared worse than did families with younger children. Parental physical activity was associated with better parent and child mental health of anxiety symptoms. We discuss the need to address the adverse impacts of the COVID‐19 pandemic on mental health in families in Latin America via coordinated mental health and psychosocial support services that are integrated into the pandemic response currently and after the pandemic subsides.

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Section: Introductionmentioning

confidence: 99%

Parental mental health and child anxiety during the COVID‐19 pandemic in Latin America

Brik

Williams

Esteinou

et al. 2022

Journal of Social Issues

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“…Some families of children with EA can adjust and develop a fulfilling life after encountering a medically challenging life event. Others are likely to develop worry, stress, or depressive symptoms in the long term [ 22 , 45 ]. Our study findings would stress the importance of holistic caring support to optimize EA child and family health, especially since it has been shown that there is ample room for improvement to facilitate the pathways to psychosocial care for children with rare diseases and their families [ 46 ].…”

Section: Discussionmentioning

confidence: 99%

Factors of family impact in a Swedish–German cohort of children born with esophageal atresia

Dellenmark‐Blom

Abrahamsson

Dingemann

et al. 2022

Orphanet J Rare Dis

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Background After repair of esophageal atresia (EA), childhood survivors commonly present with digestive and respiratory morbidity, and around 55% have associated anomalies. Although it is known that these problems can reduce health-related quality of life in children with EA, less is understood about the impact on the family. We aimed to identify factors related to family impact in children with EA. Methods One parent each of a child with EA (2–18 years) in 180 families from Sweden and Germany answered the PedsQL™ Family Impact Module as the dependent variable. The independent variables were the child’s parent-reported health-related quality of life as measured by PedsQL™ 4.0, current symptoms, school situation, and parent/family characteristics together with child clinical data from the medical records. Results Stepwise multivariable regression analysis showed a multifactorial model of the total family impact scores (R2 = 0.60), with independent factors being the child’s overall generic health-related quality of life, school-absence ≥ 1/month, severe tracheomalacia, a family receiving carer’s allowance, and a parent with no university/college education, p < 0.05. Logistic regression analysis showed that an increased number of symptoms in the child the preceding 4 weeks lowered the family impact scores; however, the child’s feeding (R2 = 0.35) and digestive symptoms (R2 = 0.25) explained more in the variation of scores than the child’s respiratory symptoms (R2 = 0.09), p < 0.0001. Conclusions Family functioning may be a contributing factor to the maintenance of child health. The study findings suggest multifactorial explanations to family impact in children with EA, which are essential when optimizing the support to these families in clinical and psychosocial practice. Future research should explore experiences of family impact from all family members’ perspectives and multicenter studies are warranted to understand better the effectiveness of psychosocial-educational interventions to families of children with EA.

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“…Furthermore, the finding that for fathers the level of care appears particularly important in assessing the mental health of the healthy sibling is consistent with previous research. 18,19 Although previous research has shown that both children with rare congenital surgical diseases [35][36][37] and their parents 6,7 experience impaired quality of life, future studies should focus primarily on psychosocial factors such as coping mechanisms to identify further relevant predictors of primary outcomes for healthy siblings.…”

Section: Discussionmentioning

confidence: 99%

“…4 One group that seems to be particularly affected by this is families of children with rare chronic diseases. [5][6][7][8] Even though entire families report facing significant care deficiencies and unmet clinical needs due to their diseased child, the siblings of the diseased children appear to be forgotten entirely, especially during the COVID-19 pandemic. 3,9,10 A disease is considered rare in the European Union if it affects less than 5 in 10,000 people.…”

Section: Introductionmentioning

confidence: 99%

Mental Health of Siblings of Children with Rare Congenital Surgical Diseases during the COVID-19 Pandemic

et al. 2021

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Introduction The COVID-19 pandemic has affected every aspect of our society, particularly vulnerable groups, such as families with children suffering from rare diseases. However, the psychosocial influences of COVID-19 on the healthy siblings of children with rare diseases have not been investigated yet. Thus, the study aimed to evaluate the mental health of healthy siblings of children with rare congenital surgical diseases during the COVID-19 pandemic. Material and methods Siblings of children with rare congenital surgical diseases were investigated cross-sectionally between April 2020 and April 2021. Data on mental health were collected using the parent-version of the Strengths and Difficulties Questionnaire (SDQ). Results Out of 104 families, 81 (77.88%) participated in the survey. Healthy siblings presented with comparable levels of emotional and behavioral difficulties compared with population norms before the COVID-19 pandemic. Compared with studies that surveyed child and adolescent mental health during the COVID-19 pandemic, parents of siblings in this study reported a significantly lower impairment rate. Psychosocial and disease-specific risk factors of the respective outcomes in healthy siblings were identified through regression analysis models. Conclusion In general, health-care professionals should be aware of the possibility of siblings' mental health being at risk. Therefore, screening for psychosocial deficits may be essential in preventing psychiatric disorders in this population, especially during pandemics. Trial registration ClinicalTrials.gov: NCT04382820 (registered April 8, 2020)

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Perceived mental health in parents of children with rare congenital surgical diseases: a double ABCX model considering gender

Cited by 12 publications

References 35 publications

Parental mental health and child anxiety during the COVID‐19 pandemic in Latin America

Parental mental health and child anxiety during the COVID‐19 pandemic in Latin America

Factors of family impact in a Swedish–German cohort of children born with esophageal atresia

Mental Health of Siblings of Children with Rare Congenital Surgical Diseases during the COVID-19 Pandemic

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