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

Abstract

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.

Keywords: Covid-19; caregivers; children with chronic disease; children with special healthcare needs; inequalities; pandemic; social support; support networks.

Figure 1

Support networks of families with CSHCN.

Figure 2

Support networks of families without CSHCN.