key: cord-1027815-qsz15w0v
authors: Ehrler, M.; Hagmann, C. F.; Kretschmar, O.; Landolt, M. A.; Latal, B.; Wehrle, F. M.
title: Mental sequelae of the Covid-19 pandemic: Well-being one year into the crisis in children with and without complex medical histories and their parents
date: 2021-12-05
journal: nan
DOI: 10.1101/2021.12.05.21267236
sha: 51e9510ab69ff8aa6487a63302f5daba2607f8b8
doc_id: 1027815
cord_uid: qsz15w0v

Objectives: To understand the long-term mental sequelae for families over the course of the COVID-19 pandemic, the well-being of children with and without complex medical histories and their parents was investigated longitudinally. Methods: Well-being of 200 school-aged children (73 typically-developing, 46 born very preterm, 73 with complex congenital heart disease) and 175 of their parents was assessed prior to and during the first (April/May 2020), second (October/November 2020), and third waves (April/May 2021) of the pandemic with standardized questionnaires. Social and COVID-19-specific determinants were investigated as predictors of impaired well-being. Results: Child proxy-reported well-being was lower than before the pandemic during the first (P <0.001) and third waves (P =0.01) but not the second (P =0.13). Child self-reported well-being was not lower during the pandemic (all P >0.10). Parent wellbeing dropped during the first wave (P <0.001) and remained low during the first year (P <0.01). One year into the pandemic, 18/25% of children (self-/proxy-report) and 27% of parents scored below the normal range compared to 11%/10%, and 16%, respectively, before the pandemic. Parents of typically-developing children reported lower well-being than parents of children born very preterm (P =0.006) or with a complex congenital heart disease (P =0.03). Child and parent well-being was lower in families with sparse social support (P <0.001) and poor family functioning (P <0.01). Conclusion: The pandemic continues to impact family well-being one year after its outbreak. Families with sparse social support and poor family functioning are particularly at risk for compromised well-being and support should be provided to them.

More than a year into the COVID-19 pandemic, evidence for an acute negative impact on mental health has accumulated around the globe (see e.g., [1, 2] for an overview). From the beginning of this crisis, children and adolescents were identified as being particularly at risk for impaired wellbeing due to the profound changes in the psychosocial environment that accompanied measures to halt the spread of the pandemic, particularly the closing of schools and the reduction of social contacts [3] [4] [5] [6] [7] . Indeed, numerous studies have reported reduced well-being and high rates of internalizing and externalizing problems and symptoms of anxiety and depression in children and adolescents during the first wave [8] [9] [10] [11] [12] [13] [14] [15] [16] [17] [18] [19] [20] . Parents were also strongly burdened by the pandemic: many of them faced increased parental responsibilities and stress working remotely while concurrently caring for their children at home [15, 19, [21] [22] [23] [24] [25] [26] [27] . Indeed, the well-being of parents was reported to be more strongly affected than that of adults without children [28, 29] . A number of factors have been associated with poor well-being during the pandemic, including social determinants such as low socio-economic status (SES) and sparse social support [1] . In addition, it is unclear whether children with pre-existing medical conditions and their parents are at particular risk for lower well-being [13, 19, 30] .

To date, the overwhelming majority of studies reported on the acute impact of the COVID-19 pandemic on well-being during the initial wave in early 2020. However, the long-term mental sequelae of this ongoing pandemic remain unknown. Thus, the aim of the current study was to investigate the well-being of children and their parents as the pandemic evolved. Data from two cohort studies assessed prior to the outbreak was complemented with data collected at three timepoints over the course of the pandemic to investigate the immediate (first wave, April-May 2020), intermediate (second wave, October-November 2020), and long-term (third wave, April-May 2021) impact on children and parents and to identify factors contributing to impaired well-being.

Families were recruited from two prospective cohort studies at the University Children's Hospital Zurich, Switzerland. The aim of those studies is to assess the neurodevelopmental outcome of children at school age who are either typically-developing or born very preterm (VPT) or who have a complex congenital heart disease [31, 32] . Families were eligible for this current study if the child had participated in the neurodevelopmental assessment and the parents had completed a set of questionnaires on child and parent well-being between January 2013 and mid-March 2020 as part of one of the cohort studies (T0: prior to the implementation of measures to reduce COVID-19 in Switzerland). Parents of eligible families were invited to complete an online survey once during the first wave of the pandemic (T1: between April 17 and May 10, 2020), while lockdown measures, All rights reserved. No reuse allowed without permission. perpetuity. preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in The copyright holder for this this version posted December 5, 2021. ; https://doi.org/10.1101/2021.12.05.21267236 doi: medRxiv preprint including school closure, were in place in Switzerland [13] . Families who had participated in the T1 assessment were approached again once during the second wave (T2: between October 30 and   November 22, 2020) and once during the third wave (T3: between April 23 and May 23, Families who participated in the COVID-19 survey at T1 did not differ in family SES or parent well-being prior to the pandemic (T0) from those who did not [13] . Further, parents who participated at T2 (P=0.192) and T3 (P=0.671) did not differ in parent well-being at T1 from those who did not participate. The study was approved by the local ethics committee, and all parents gave written informed consent.

Standardized questionnaires assessing quality of life were selected from the protocols of the two cohort studies (T0) and were included in the online surveys at T1, T2, and T3.

For children, the psychological well-being subscale of Kidscreen-27 [33] was used to assess wellbeing. Parents completed the proxy-report of the scale at all time-points. Children completed the self-report of the scale at T0, T2 and T3. At T0, children completed the questionnaires during the on-site assessment for the prospective cohort studies. At T2 and T3, the questionnaires were sent to the children by mail after the parents had completed the online survey. The psychological wellbeing subscale includes 7 items that assess the child's positive emotions and satisfaction and the absence of feelings of loneliness and sadness. Raw subscale scores were transformed into T-values with Swiss norms (n = 1672, adjusted for age and sex). Low values indicate poor well-being [33] .

For parents, the mental subscale of the Short Form Health questionnaire was used to assess selfreported well-being. The 36-item version (SF-36) was used at T0, and the 12-item short form (SF-12) was used at T1, T2, and T3 [34] . For the analysis at T0, only the 12 items overlapping with the short form were considered. The mental subscale of the SF-12 assesses four dimensions: vitality, social function, role limitations due to emotional problems, and mental health. Raw scores were transformed into T-values based on German norms (n = 2524) [35] . Both the Kidscreen-27 and the SF-12 have acceptable to good internal consistency [33, 34] . Several potential predictors of child and parent well-being were assessed: Family SES was defined as a combined score of maternal and paternal education. Higher scores indicate higher SES (range 2 to 12). At T0, parents completed the 14-item short form of the Social Support Questionnaire (F-SozU K14 [36] ), assessing the perceived extent of support from the social network that is accessible if needed. Three dimensions, emotional support, practical support, and social integration, were All rights reserved. No reuse allowed without permission. perpetuity. preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in The copyright holder for this this version posted December 5, 2021. ; https://doi.org/10.1101/2021.12.05.21267236 doi: medRxiv preprint summed according to the manual. Higher scores indicate more social support. The F-SozU K14 has excellent internal consistency [36] . The quality of family functioning was assessed during the first wave of the pandemic with the 27-item Family Relationship Index (FRI [37] ). Three dimensions, cohesion, expressiveness, and conflict, were summed according to the manual. Higher scores indicate better quality of family functioning. The FRI has good internal consistency [37] . Familial COVID-19 risk status was assessed by asking parents whether a family member was at risk for a severe disease course in case of an infection with SARS-Cov-2 due to a pre-existing health condition. A dichotomous variable differentiated families with a member at increased risk from those without.

Parent and child characteristics are expressed as numbers and proportions of totals (dichotomous data), median and interquartile range (ordinal data), and mean and standard deviation (continuous data). Child and parent well-being were compared to normative data at each time-point using onesample t-tests for normally distributed data and Mann-Whitney U-tests for skewed data. Effect sizes were estimated with Cohen's d (small effect >0.2, moderate effect >0.5, strong effect >0.8 [38] ).

The proportion of children and parents scoring below the normal range (>1 SD below the normative mean or median) were reported separately for each time-point.

Longitudinal changes of child and parent well-being were investigated with mixed-effect models:

Three models were calculated with the following outcomes: 1) proxy-reported child well-being, 2) self-reported child well-being, and 3) parent well-being. As fixed effects, the models included assessment time (categorical: T0 = prior to the pandemic; T1 = first wave, spring 2020; T2 = second wave, fall 2020; T3 = third wave, spring 2021), group (categorical: typically-developing, CHD, and VPT), and age at assessment of the child or the parent. As random effect, family-specific intercepts were included to take respondent-specific variability and shared variance between siblings into account (pairs of siblings: n=21). Children's individual intercepts were nested within families. The potential predictors of child and parent well-being were then added to those models with a significant time effect.

Unstandardized regression coefficients (B) and generalized semi-partial R 2 (R 2 B ), to quantify effect sizes for mixed models, were reported (small: R 2 B <0.01; medium: R 2 B >0.09; large: R 2 B >0.25 [39] ). The distribution of residuals was examined to evaluate normality.

All analyses were performed with R version 4.0.3 [40] . P-values at an α-level of 0.05 were considered statistically significant. All rights reserved. No reuse allowed without permission. perpetuity. preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in The copyright holder for this this version posted December 5, 2021. ; https://doi.org/10.1101/2021.12.05.21267236 doi: medRxiv preprint

Before the pandemic (T0), families of 346 children had participated in one of the two cohort studies and thus were eligible for the current study. Families of 200 children participated in the online survey at T1 (follow-up rate = 58%). At T2, families of 138 children (follow-up rate = 70%) completed the online survey again and at T3, families of 134 children (follow-up rate = 67%).

Primarily, mothers reported on the well-being of their children (>90%). The questionnaires of both parents were available for 27 children, therefore only the mothers' responses were retained for further analyses. In a number of families, parents completed the survey for more than one child, resulting in 175, 122, and 117 parents participating at T1, T2, and T3. Sample characteristics are displayed in Table 1 .

Of the children with CHD, 21% had a univentricular heart defect. Children born VPT were born at a mean gestational age of 28.9 weeks (SD=1.6). In 23 families, at least one family member had been infected with SARS-CoV-2. In 75 families, at least one family member was reported to be at risk for a severe course of disease in case of a SARS-CoV-2 infection. Table 2 displays the comparison to normative data for child and parent psychological well-being.

Statistical estimates of the three models assessing longitudinal changes in child and parent wellbeing are presented in Table 3 . Compared to before the pandemic, child proxy-reported well-being was significantly lower during the first and the third but not the second wave of the pandemic (Fig1A). The model's effect size was small (R 2 B (CI-95)=0.047(0.027 to 0.090)). Adding the predictors increased the models effect size to medium (R 2 B (CI-95)=0.145(0.110 to 0.205)). Wellbeing was independent of group and age of the child. Sparse social support before the pandemic and poor family functioning during the first wave significantly predicted lower well-being. There was no significant interaction between either assessment time and perceived social support Compared to before the pandemic, parent well-being dropped significantly during the first wave of the pandemic and remained significantly lower during the second and third waves (Fig1C). The model's effect size was small (R 2 B (CI-95)=0.048(0.028 to 0.087)). Adding the predictors increased the model's effect size to medium (R 2 B (CI-95) = 0.132(0.101 to 0.186)). The well-being of parents of children born either VPT or with a CHD was higher than the well-being of parents of typically-All rights reserved. No reuse allowed without permission. perpetuity. preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in The copyright holder for this this version posted December 5, 2021. ; https://doi.org/10.1101/2021.12.05.21267236 doi: medRxiv preprint developing children. Well-being was independent of parent age. Sparse social support before the pandemic and poor family functioning during the first wave significantly predicted lower wellbeing. There was no significant interaction between assessment time and group (P=0.116), assessment time and social support (P=0.350), or assessment time and family functioning (P=0.137) on well-being.

This study is the first to investigate the mental sequelae for families one year into the COVID-19

pandemic. The findings provide longitudinal evidence that the well-being of both school-aged children and their parents have been compromised over the first year of the pandemic. Parents of typically-developing children experienced lower well-being than parents of children with complex medical histories before and during the pandemic. Families with sparse social support and poor family functioning are particularly at risk for poor well-being.

Concerns about the mental sequelae of the pandemic for families have been raised since measures were initially implemented to reduce the spread of COVID-19 in spring 2020 [3] [4] [5] [6] [7] . However, despite early calls for longitudinal research [7, 41] , to date very little is known about the potential long-term mental sequelae for families. Two studies have reported impaired child and parent wellbeing a few months after the initial wave, suggesting a prolonged negative impact [42, 43] . The current study is the first to link child and parent well-being before the outbreak of the pandemic in March 2020 to the well-being of the same individuals at three time-points over the following year.

Tracking these families as the pandemic evolved revealed compromised well-being in both children and parents, with up to one in three experiencing substantially compromised well-being during the first year of the COVID-19 crisis. In addition to confirming the drop in child and parent well-being during the first wave of the pandemic reported by previous studies [8] [9] [10] [11] [12] [13] [14] [15] [16] [17] [18] [19] [20] [21] [22] [23] [24] [25] [26] [27] , the current study adds an important long-term perspective: Parents reported that the well-being of their children was lower during the first and third waves of the pandemic but not the second. Parents reported that their own well-being dropped during the first wave and remained low during the second and third waves. In Children and adolescents themselves reported levels of well-being during the pandemic similar to those before. This is in line with an observed discrepancy between parent and child accounts of child well-being [44] . Importantly, although well-being was preserved at group-level one year into the crisis, one in five children and adolescents self-reported substantially compromised well-being; this is below one standard deviation from the norm. Similarly, a study in adolescents previously All rights reserved. No reuse allowed without permission. perpetuity. preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in The copyright holder for this this version posted December 5, 2021. ; https://doi.org/10.1101/2021.12.05.21267236 doi: medRxiv preprint found no change in well-being at group-level during the first wave of the pandemic but reported considerable variability between individuals [45] .

Consequently, future research investigating subgroups of individuals with different trajectories of well-being over the course of the pandemic and identifying potential predictors of these trajectories will significantly advance understanding of the long-term mental sequelae of this crisis. This should include investigating the positive effects of the pandemic reported by many studies, such as increased family time and reduced stress from fewer obligations related to school or other activities [e.g., 46].

Interestingly, both before and during the pandemic, parents of children with complex medical histories, namely if they were born either very preterm or with a complex congenital heart disease experienced higher level of well-being than parents of typically-developing children. A change in the perception of well-being by adapting internal standards and values, termed a response shift, has previously been argued to underlie above-norm well-being in clinical populations [47, 48] .

Important in the context of the pandemic, in the current study, parents of children both with and without complex medical histories experienced similar drops in well-being over the pandemic.

Furthermore, families with a member who was at increased risk for a severe disease course in case of infection with Sars-Cov-2 were affected similarly to families without in their well-being during the pandemic. Importantly, individuals with pre-existing medical conditions have, despite retaining their levels of well-being, previously been shown to experience specific concerns related to the ongoing pandemic, including increased fear of contracting the virus, and may thus require specific attention from their health care providers [e.g., 49, 50] .

Families with sparse social support and poor family functioning during the first wave of the pandemic were found to be at particular risk of poor well-being. Social factors have previously been identified as contributors to poor well-being during the pandemic [1] . However, these factors are likely not unique to the COVID-19 pandemic because they have been shown to contribute to poor well-being of children and parents in general [e.g, 51, 52] . Even so, the confirmation of social risk factors for poor well-being during the ongoing pandemic is important for identifying families who are at particular risk for long-term mental sequelae. Moreover, social support may be provided not only by the individuals' social network but also by professionals, including social workers. Thus, strengthening services during and in the aftermath of the current pandemic may prevent long-term mental health sequelae for those at risk.

The current longitudinal investigation draws on two cohort studies not originally designed to investigate the mental sequelae of COVID-19 for families. Thus, some limitations require consideration: The questionnaires for the assessments during the pandemic were selected from the All rights reserved. No reuse allowed without permission. perpetuity. preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in The copyright holder for this this version posted December 5, 2021. ; https://doi.org/10.1101/2021.12.05.21267236 doi: medRxiv preprint study protocol of the cohort studies to allow changes to be investigated. These questionnaires assess well-being rather than mental health symptoms; thus, the conclusions that can be drawn about the prevalence of mental health problems during the pandemic are limited. The study sample includes children with and without complex medical histories and is not representative of the general population of children and parents in Switzerland. However, the longitudinal findings presented here are in line with and complement findings from cross-sectional studies conducted during the initial wave of the pandemic with nationally representative samples that report child and parent well-being compromised in comparison to normative data [11, 25] .

The sample size of the current study was relatively small compared to previous cross-sectional studies [e.g., 15, 16, 20] . However, its longitudinal design ensured well-powered analyses owing to within-subject correlations [53] .

Participating families come from high and rather homogenous socio-economic backgrounds, as is often seen in prospective cohort studies [54] . This may explain the absence of any effect of SES on well-being, which had been expected from previous findings [1] .

Finally, self-reported well-being of children and adolescents was only assessed during the second and third waves of the pandemic but not the first. Thus, no conclusion can be drawn from this study about any potential immediate effects on child self-reported well-being.

This study provides evidence of the long-term mental sequelae of the COVID-19 pandemic for children and their parents, with up to one third reporting substantially compromised well-being one year into the crisis. Even small psychological impacts of the pandemic have been argued to require careful attention as they may pose a substantial public health problem if reproduced across the whole population [2] . Consequently, it is crucial to provide psychological support to those in need alongside the comprehensive economic measures that have been implemented by governments to recover from the ongoing COVID-19 pandemic. perpetuity. preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in The copyright holder for this this version posted December 5, 2021. ; https://doi.org/10.1101/2021.12.05.21267236 doi: medRxiv preprint

[54] K. Gustavson, T. von Soest, E. Karevold, E. Røysamb, Attrition and generalizability in longitudinal studies: findings from a 15-year population-based study and a Monte Carlo simulation study, BMC public health 12(1) (2012) 1-11. All rights reserved. No reuse allowed without permission. perpetuity. preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in The copyright holder for this this version posted December 5, 2021. ; https://doi.org/10.1101/2021.12.05.21267236 doi: medRxiv preprint perpetuity.

preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in

The copyright holder for this this version posted December 5, 2021. All rights reserved. No reuse allowed without permission. perpetuity. preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in All rights reserved. No reuse allowed without permission.

perpetuity.

preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in All rights reserved. No reuse allowed without permission.

perpetuity.

preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in

The copyright holder for this this version posted December 5, 2021. ; https://doi.org/10.1101/2021.12.05.21267236 doi: medRxiv preprint Fig1: Child proxy-(A) and self-reported (B), and parent (C) well-being before and during the COVID-19 pandemic.

Note. The box represents the interquartile range. The thick line within the box corresponds to the sample's median. The grey dashed line represents the normative median (child well-being: Mdn = 5033, parent well-being: Mdn = 5335). Dots represent outliers. T0 = before the COVID-19 pandemic, T1 = first wave of the COVID-19 pandemic (April-May 2020), T2 = second wave of the COVID-19 pandemic (October-November 2020), T3 = third wave of the COVID-19 pandemic (April-May 2021). Child self-reported well-being was not assessed at T1. Well-being is expressed as T-values. ns = not significant, ** P < 0.01, ***P < 0.001.

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