Mental Health of Caregivers of Children with Medical Complexity During COVID-19.

OBJECTIVE: The purpose of this study is to investigate the relationship between mental health and financial burden among caregivers of children with medical complexity (CMC) during the COVID-19 pandemic. METHODS: We conducted a cross-sectional survey on the mental health and financial burden of caregivers of CMC from April 2020 to April 2021. The study sample included 70 caregivers. We analyzed the association between caregiver mental health and caregiver demographics and child characteristics through bivariate linear regressions. We then used multivariate linear regression to assess the association between caregiver mental health and caregiver financial burden adjusting for significant covariates from our bivariate analysis. RESULTS: Caregivers reported lower mental health scores (56.2) and higher financial burden scores (15.5) than reference population means: (72.6; SD 20.2) and (10.4; SD 2.2), respectively. Financial burden [-3.4; p = 0.0003; CI: -5.1 to -1.6] and child age [-0.1; p = 0.02; CI: 0.2-1.8] were significantly associated with caregiver mental health in our bivariate analysis. In our multivariate analysis, caregivers with an increased financial burden had lower mental health scores [-3.0; p = 0.002; CI: -4.8 to -1.2]. CONCLUSION: Caregivers of children with medically complex conditions experienced more mental health symptoms and greater financial burdens than normative samples during the COVID-19 pandemic. Parents with a greater financial burden also tend to have more mental health issues. Eligibility for financial assistance should include financial burden and income when providing help to families in this population. Local and national stakeholders should consider the provision of financial help in their quest to improve the mental health of caregivers.

Making Meaning After the Death of a Child.

Two bereaved mothers recount how they made meaning after the deaths of their children, recounting how opportunities to tell their stories in medical settings enabled them to construct narratives that promoted resilience and a sense of control. Pediatric palliative care can be conceived as opening space for patients and guardians to tell their stories outside of the specifics of illness, so medical teams can work to accommodate families' values and goals, thereby initiating the process of meaning making. Viewing videos of parent stories enables medical trainees to enhance their communications skills, empathy, and compassion.