Exploring the experience of family caregivers of children with medical complexity during COVID-19: a qualitative study

Abstract

Background and objectives Children with medical complexity have been disproportionately impacted by the COVID-19 pandemic and the associated changes in healthcare delivery. The primary objective of this study was to gain a thorough understanding of the lived experiences of family caregivers of children with medical complexity during the pandemic. Methods We conducted semi-structured interviews with family caregivers of children with medical complexity from a tertiary pediatric hospital. Interview questions focused on the aspects of caregiving for children with medical complexity, impact on caregiver mental and physical well-being, changes to daily life secondary to the pandemic, and experiences receiving care in the healthcare system. Interviews were conducted until thematic saturation was achieved. Interviews were audio recorded, deidentified, transcribed verbatim, coded and analyzed using content analysis. Results Twelve semi-structured interviews were conducted. The interviews revealed three major themes and several associated subthemes: (1) experiences with the healthcare system amid the pandemic (lack of access to healthcare services and increased hospital restrictions, negative clinical interactions and communication breakdowns, virtual care use); (2) common challenges during the pandemic (financial strain, balancing multiple roles, inadequate homecare nursing); and (3) the pandemic’s impact on family caregiver well-being (mental toll, physical toll). Conclusions Family caregivers of children with medical complexity experienced mental and physical burden due to the intense nature of their caregiving responsibilities that were exacerbated during the pandemic. Our results highlight key priorities for the development of effective interventions to support family caregivers and their children.

How Families Manage the Complex Medical Needs of Their Children with MECP2 Duplication Syndrome

“…The parents acknowledged that by actively reducing their child's exposure to the wider community, their child's physical health, but not their mental health, improved. The other literature has reported that enforced isolation during the COVID-19 pandemic resulted in increased mental health issues in children, including stress, depression, and anxiety [63][64][65][66][67]. Further research exploring strategies to accommodate the child's physical health needs without sacrificing child and family emotional health during isolation is needed, in preparation for future pandemics.…”