Perceived social support and characteristics of social networks of families with children with special healthcare needs following the COVID-19 pandemic.

Background: Children with special healthcare needs (CSHCN) require more support than the average of their peers. Support systems for CSHCN were particularly affected by pandemic control measures. Perceived social support is a resource for health and wellbeing for CSHCN and their families. Associations of social support, mental health and socioeconomic status (SES) have been described. This study aims to (1) assess perceived social support in families with and without CSHCN; (2) describe structure and types of social networks of families with and without CSHCN; and (3) explore associations between perceived social support, disease complexity, child and caregiver mental health, and SES. Methods: This is the third of a sequential series of cross-sectional online surveys conducted among caregivers of children ≤ 18 years in Germany since the beginning of the COVID-19 pandemic, administered between 1st December 2022 and 10 March 2023. The Brief Social Support Scale (BS6) assessed perceived social support. Child and parental mental health were assessed using the Strengths and Difficulties Questionnaire (SDQ) and WHO-5 Wellbeing index. The CSHCN-Screener identified CSHCN. Descriptive statistics and linear regression modeling assessed associations between perceived social support, parent-reported child mental health problems, disease complexity, caregiver mental wellbeing and SES. Results: The final sample included 381 participants, among them 76.6% (n = 292) CSHCN. 46.2% (n = 176) of caregivers reported moderate, i.e., at least occasional social support. Social support was largely provided by informal social networks consisting of partners, relatives and neighbors/friends. Linear regression modeling revealed associations of lower perceived social support with higher disease complexity of the child, lower caregiver mental wellbeing, lower SES and increasing caregiver age. Conclusion: The results of this study describe inequalities in perceived social support according to disease complexity of the child, caregiver mental health and socioeconomic status. They highlight the importance of social support and support networks as a resource for wellbeing of caregivers and CSHCN. Moving on from the COVID-19 pandemic, recovery strategies should focus on low-threshold interventions based in the community to improve social support for families with CSHCN and actively involve caregivers in identifying needs and co-creating new approaches.

[Use of support and relief services for parents of children in need of care: Results of the FamBer observational study]. / Inanspruchnahme von Unterstützungs- und Entlastungsdiensten für Eltern pflegebedürftiger Kinder.

Use of support and relief services for parents of children in need of care: Results of the FamBer observational study Abstract: Background: Parents of children in need of care in Germany can fall back on a variety of relief and support services. So far, however, there has been a lack of systematic studies and quantitative data on the use of such offers at the individual level of parents and other legal guardians. Aim: The study on the compatibility of care and work for parents with a child in need of care (FamBer; funding: Federal Ministry for Family Affairs, Senior Citizens, Women and Youth, Germany) examines the knowledge of relief and support services, their use and the perceived benefits of these offers. Methods: 1070 parents answered a multidimensional online questionnaire in the cross-sectional study that was developed based on the Kindernetzwerk Study 2 from 2013 and the German socio-economic panel (SOEP). In addition to descriptive analyses, group comparisons were carried out using Chi2, Mann-Whitney U or Kruskal-Wallis H tests. Results: 43 to 58% of parents are aware of the respective legal options for taking time off work, but only very few families make use of them. The other support offers differ significantly in terms of the level of knowledge and utilization; these vary primarily with the education of the parents and the care needs of the child. They assessed the used services for consultation and advice as only little helpful. Conclusions: Due to the study design, we cannot rule out that the findings are also based on personal characteristics of the parents and their living conditions. Nevertheless, a large number of problems (e.g. a lack of information, low using, ineffectiveness of support services) can be identified that need to be overcome.

Mental health of children with and without special healthcare needs and of their caregivers during COVID-19: a cross-sectional study.

OBJECTIVE: To describe mental health outcomes and measures of pandemic burden of children with and without special healthcare needs, and their caregivers following the second wave of the COVID-19 pandemic in Germany. DESIGN: This is the second of a sequential series of cross-sectional online surveys conducted among caregivers of children ≤18 years since the onset of the COVID-19 pandemic, administrated between 2 April 2021 and 31 July 2021. MAIN OUTCOME MEASURES: Child and parental mental health were assessed using the Strengths and Difficulties Questionnaire and WHO-5 Well-being index. Children with Special Healthcare Needs (CSHCN) were identified using the CSHCN-Screener. Descriptive statistics, linear and hierarchical logistic regression modelling assessed associations between parent-reported child mental health problems and measures of pandemic burden, disease complexity, caregiver mental well-being and socioeconomic status. RESULTS: 521 participants were included in the final sample. There was a high prevalence of parent-reported mental health problems in n=302 (66.7%) children, particularly in CSHCN. Among caregivers, n=372 (72.5%) screened positive for depression. Logistic regression modelling showed a strong association of child mental health problems and disease complexity, parental mental well-being, increase in family conflict and inadequate social support. CONCLUSIONS: Our study identifies CSHCN as a particularly vulnerable group in terms of mental health outcomes. Psychosocial factors were important predictors of parent-reported child mental health problems. Policy measures should consider the importance of social support systems for vulnerable children and their families, and aim to provide accessible mental health support for caregivers.

Impact of the COVID-19 Pandemic on Mental Health Outcomes of Healthy Children, Children With Special Health Care Needs and Their Caregivers-Results of a Cross-Sectional Study.

BACKGROUND: Several studies have described widening inequalities as a result of the COVID-19 pandemic, mostly for adult populations. Children and adolescents are particularly impacted by the indirect effects of the pandemic and lockdown measures, such as reduced access to or delays in health care and school closures. National surveys in several countries also show a rising mental health burden in children and adolescents during the COVID-19 pandemic. Children with special health care needs are a particularly vulnerable group in this context as they rely on a wide range of services, which were mostly suspended during the first wave of the pandemic. This study aims: (1) to describe the mental health outcomes of children with and without special healthcare needs and of their caregivers following the first national lockdown in Germany; (2) to investigate variations in mental health outcomes and measures of pandemic burden according to socioeconomic status; (3) to assess the impact of socioeconomic status, disease complexity and psychosocial burden on parent-reported child mental health problems. METHODS: We conducted an online survey among 1,619 caregivers of children aged 1-18 years from August 11th until October 5th 2020. Participants were recruited both from families of children with special healthcare needs and of healthy children. Inequalities were analysed by descriptive statistics, simple and hierarchical logistic regression modelling to explore the association between socioeconomic status and psychological outcome measures, disease complexity and general burden related to COVID-19. RESULTS: There was a high prevalence of 57.4% of parent-reported mental health problems in children and of a positive screening score for depression in 30.9% of parents. Parent-reported mental health problems were more likely to affect children with low socioeconomic status, with complex chronic disease and those whose parents screened positive for depression. CONCLUSIONS: This study highlights inequalities in parent-reported child mental health outcomes by socioeconomic status and disease complexity in a large sample of German families with and without children with special health care needs. Political measures should put children at the centre and aim to mitigate the unequal impact of the COVID-19 pandemic, particularly on the mental health of vulnerable children.