Children and families have been uniquely affected by the COVID-19 pandemic. While children appear to experience milder symptoms from COVID-19 infection than older individuals , sudden changes in routines, resources, and relationships as a result of restrictions on physical interaction have resulted in major impacts on families with young children. In the absence of school, child care, extra-curricular activities and family gatherings, children’s social and support networks have been broadly disrupted. Stress from COVID-19 has been compounded by additional responsibilities for parents as they adapt to their new roles as educators and playmates while balancing full-time caregiving with their own stressful changes to work, financial and social situations. On the contrary, families with greater parental support and perceived control have had less perceived stress during COVID-19 .
The COVID-19 pandemic has rapidly sparked research activity across the globe. Patient and family voices are increasingly considered essential to research agenda and priority setting . Understanding the physical, mental, and emotional consequences of the COVID-19 pandemic for families will inform approaches to support parents and children during the pandemic and after. In this unusual time, patient and family voices can be valuable in informing health research priorities, study designs, implementation plans and knowledge translation strategies that directly affect them .
As a multidisciplinary team of child health researchers with expertise in general paediatrics, nutrition and mental health, we assembled a group of nine parents to identify concerns, raise questions, and voice perspectives to inform COVID-19 research for children and families. Parents were recruited from the TARGet Kids! primary care research network , which is a collaboration between applied health researchers at the SickKids and St. Michael’s Hospitals, primary care providers from the Departments of Pediatrics and Family and Community Medicine at the University of Toronto, and families. Parents were contacted by email and invited to voluntary meetings on April 7 and 23, 2020 via Zoom  for 3 h. In an unstructured discussion, we asked how parents imagined research about COVID-19 could make an impact on child and family well-being. Parents were encouraged to share their lived experience and perspectives on the anticipated effects of COVID-19 and social distancing policies on their children and families, and opinions to inform how research on child mental and physical health during and after the pandemic could best be conducted. Parents had opportunities to review proposed data collection tools such as smartphone apps and serology testing devices, and provided feedback about the feasibility and meaningfulness of each. Content, frequency and organization of questionnaires were also reviewed by parents to ensure they were appropriate in length and feasible to complete.
Parents were optimistic that research would provide an understanding of the effects of COVID-19 on families and deliver solutions to minimize negative effects and bolster positive effects. Parents wondered about several questions which they hoped research would answer including: What will be the effects of physical distancing and disrupted routines for my children? How can I help my children develop healthy coping habits? How can I appropriately talk about the virus with my children? What factors might predict resiliency against negative effects of the pandemic among children and families, and how can these be strengthened?
Parents speculated what risks children might face as a result of schoolwork transitioning to home, educational activities provided online, child care being limited or unavailable, social relationships changing, sports and extra-curricular activities being cancelled, and stress and anxiety increasing at home. Some parents reflected on feeling some relief from not having to coordinate usual extracurricular activities. However, they expressed frustration in finding high quality educational activities and resources to support physical and mental health for their children during physical isolation. Parents voiced a need for a centralized, accessible hub with peer reviewed, high quality resources to keep children entertained and supported while spending more time indoors, away from usual activities and school. They hoped for resources to help families adjust to new routines and roles, as well as answer children’s questions in truthful ways that would not increase anxiety.
Parents were curious about studying the impact of COVID-19 on children and families. How would researchers use information about children who are affected physically, mentally, or socially by the pandemic? What could be the possible implications of testing for COVID-19 on social relationships and parents’ employment? This question generated discussion about difficult positions families of lower socio-economic status, who may need to maintain attendance at work but have a suspected COVID-19 infected household member. Would health and social care for children going forward reflect the unique ways they had been impacted by changes in their daily routines and relationships? How can families return to school and everyday routines with a minimum of disruption? What will be done to prepare children and families for emergency situations in the future? Considering these questions may lead child health researchers to study relevant and contemporary concepts to families during the COVID-19 pandemic.
When presented with options to include more measures on other family members, parents maintained that the focus of our COVID-19 research should be on children. Parents provided essential feedback about the length and frequency of questionnaires, to ensure they were appropriate given the limited time available for completing them. Parent involvement early in the research process helped to direct research priorities, informed data collection strategies and hopefully has increased the relevance of research conducted for children and families. Conducting a follow-up meeting with parents was important to understand shifting concerns and ensure data collection was reflecting current routines, habits and policies affecting families.