Patients help develop recommendations to improve care for children with medical complexity during pandemics
Strict public health measures were needed during the COVID-19 pandemic to keep people safe, but created many challenges, especially for families with children who have complex care needs. These families faced heavy caregiver burdens due to fragmented health and social support systems, which worsened with the cutback of non-urgent services and in-home supports. The shift to virtual learning also took away vital in-class resources, affecting the children’s education and development.
“As a caregiver of a medically complex child during the COVID19 pandemic, I felt invisible and helpless regarding policy implementation and changes that were not taking into consideration one of the most vulnerable populations. Medically complex children “First Voices” were not being heard and decisions were being made about us…without us.”
Julie Clegg, Patient/Public Partner
In the Maritimes—Nova Scotia, New Brunswick, and Prince Edward Island—the challenges were particularly pronounced. With only one pediatric specialty care facility serving the region, interprovincial coordination became a significant hurdle. Recognizing these difficulties, a team of researchers, led by Maritime SPOR SUPPORT Unit (MSSU) Implementation Science Lead Dr. Janet Curran, launched a study to understand the impacts of the public health measures on these families, aiming to inform better care practices for future pandemics and beyond.
Central to this study was the involvement of patient and community partners, like Clegg. Three patient partners, all parents of children with complex care needs, played crucial roles in the research process.
As one of the principal investigators, Clegg said she has been included in everything from designing a hypothesis, methodology, data collection, analysis, interview process, measurement, and evaluation.
“The health care team and researchers value my learned experiences ensuring that the research is relevant and purposeful,” she said.
The study also incorporated a sex- and gender-based analysis (SGBA+) to explore the socio-structural determinants of health. By collecting sociodemographic data—including variables such as sex, gender, race, ethnicity, socioeconomic status, (dis)ability, and citizenship—the research aimed to uncover health inequities and the broader systems of power influencing these families’ experiences.
The study resulted in a set of recommendations (not yet published) aimed at governments, health authorities, and healthcare organizations. These recommendations, informed by the direct experiences of affected families, hold the potential to drive meaningful change for this important population[GC1] .
By focusing on the real-world challenges faced by children with complex care needs and their families, this research has paved the way for more responsive and equitable health care solutions. The support of the MSSU in guiding this patient-oriented research ensured that the findings and recommendations were grounded in lived experience, enhancing their relevance and potential for implementation.
“By listening to those most affected and integrating their voices into the research process, we can develop solutions that truly meet their needs, ensuring that no family is left behind in future public health crises,” said MSSU staff Mary-Ann Standing, a study co-lead and Director of UPEI Centre for Health and Community Research.