Experiences of children with disabilities during the COVID-19 pandemic in Sweden: a qualitative interview study

Abstract

BackgroundThe impact of the COVID-19 pandemic on people with disabilities has been described as a ‘triple jeopardy’. Not only have they experienced the negative social impacts of disease control measures, but access to required health services has been affected, and, not least, they are at increased risk of severe outcomes from COVID-19. This study aimed to determine how children with disabilities have experienced the pandemic in Sweden and its impact on their lives.MethodsSix children (5–13 years) were interviewed via video conferencing. An interview guide was adapted based on the children’s communicative abilities and included augmentative and alternative communication support. Reflective field notes were included in the analysis. The data were analysed using qualitative content analysis.ResultsTwo themes were identified: The child’s knowledge of Corona raises anxiety and fear; and Boring Corona makes the child even lonelier. The children had knowledge about and were worried about COVID-19, primarily about illness and death of their grandparents. The children longed for their grandparents and other social contacts at school, and life was described as boring and lonely. Many families lacked adequate tools to communicate with their children about the pandemic.ConclusionGiven adequate support, children with disabilities and communication difficulties can give insights to their unique life situations. The interviewed children reported significant impact on their life and school life. Children were worried about their grandparents based on their knowledge about the virus. The enthusiasm with which the children engaged in the interviews is testament to the need and right of all children, regardless of communicative competence, to voice their experiences

Child Rights during the COVID-19 Pandemic: Learning from Child Health-and-Rights Professionals across the World

“…Although the pandemic led to children spending more time with their families, access to healthcare and social support for Brazilian families of children with Down syndrome was limited [51]. Another study from Sweden by Fäldt et al [52] described loneliness in their paediatric participants due to disabled children having small social networks. They were, therefore, at risk of becoming socially isolated.…”

What supports and services post COVID-19 do children with disabilities and their parents need and want, now and into the future?

“…(i) Visual worksheet . Art-based research (using drawing, painting, photography or drama) is a research method often used in research with children and/or individuals who have difficulties with speech production, reading or writing ( 10 , 30 , 34 , 52 ). Visual tools provide an alternate way for participants to express their experiences.…”

Are We Ready to Really Hear the Voices of Those Concerned? Lessons Learned from Listening to and Involving Children in Child and Family Psychology Research

“…So, we conducted a qualitative study specifically targeting this group. Six children, 5-12 years of age living with a severe disability, were interviewed about their pandemic experiences (Fäldt et al, 2022). They reported feeling lonely and bored, missing their grandparents and spare time activities.…”

“…Regrettably, when a child communicates with other means than spoken language they often are passive researched objects instead of active participators (Dindar et al, 2017;Tisdall & Kay, 2017). Even though they have vital experiences and insights, share the right to make their voices heard and, according to our experiences, want to make their voices heard (Fäldt et al, 2022), they are often excluded from being involved in the research process and even participating in studies (Tager-Flusberg & Kasari, 2013;. This may be partly explained by the fact that including children with complex communication needs puts extra demands on the researcher.…”