The COVID‐19 Pandemic Experience of Families With Children With Developmental Disorders in Northeastern Germany
Teresa Vela Martín, Martina P. Neininger, Gudrun E. Krause, Thilo Bertsche, Astrid Bertsche, Sarah JeschkeABSTRACT
Background
Developmental disorders are associated with considerable challenges for affected children and their families. During the COVID‐19 pandemic, families faced additional stress, including challenging decisions regarding COVID‐19 vaccination for their children. This exploratory study therefore examined the experiences of families with children with developmental disorders during the pandemic and their attitudes towards vaccination, including the perceived benefits and disadvantages of their decision.
Methods
This exploratory study was conducted from April to June 2022 at a university hospital in Northeastern Germany. The semi‐structured interviews included open and closed questions, as well as 5‐point Likert scales.
Results
We interviewed 65 parents of children aged 3–17 years (median age: 6; Q25/Q75: 4/11). Among them, 69% reported a negative impact on their child, most frequently emotional and behavioural changes (45%), followed by developmental and educational setbacks (26%) and social and communication difficulties (14%). Seventy‐three percent of parents perceived the influence of the COVID‐19 pandemic on the parent–child interaction as very, rather or partly burdensome. Governmental support was judged as ‘not adequate’ or ‘rather not adequate’ by 64% of parents. Among the 44 children eligible for COVID‐19 vaccination, 59% were not vaccinated. Fear of adverse events was the main reason against vaccination (81%), whereas fear of COVID‐19 infection was the main motivation for those who chose to vaccinate (89%). Vaccination was associated with perceived benefits in daily life, whereas nonvaccination was associated with reduced participation and increased infection‐related worries.
Conclusions
Most parents of children with developmental disorders perceived negative effects of the pandemic on the lives of their child and themselves. Among children eligible for COVID‐19 vaccination, more than half of the parents decided against vaccination, despite reported benefits of vaccination and reported disadvantages associated with nonvaccination. Future research is needed to develop tailored vaccination campaigns and safety‐focused communication strategies for children with developmental disorders.