Effect of Isolation On Mental Health Profiles of Caregivers of Children with Medical Complexity: A Mixed Methods Embedded Case Study

TL;DR

This study examines how caregivers of children with complex medical needs coped mentally during the 2020 isolation period, identifying factors that distinguished those with better mental health.

Contribution

The study provides the first in-depth mental health profiles of caregivers of children with medical complexity using mixed methods and longitudinal data.

Findings

Over 70% of caregivers reported below-average mental health during isolation.

Caregivers with well mental health showed declines after six months.

Financial concerns were unique to caregivers with poor mental health.

Abstract

The aim was to obtain mental health profiles of caregivers of children with medical complexity (Co‐CMC) during periods of adjustment and adaptation through embedded case study during shared isolation in 2020.

A sequential mixed‐methods embedded case study of mental health adjustment from an online community‐dwelling sample of Co‐CMC, Canada. The quantitative ‘unit of analysis’ was collected prospectively to classify study participants as having ‘well’ or ‘below‐average’ mental health, based on norm‐referenced self‐reported mental health trajectories using the PROMIS General Mental Health Scale. The qualitative ‘unit of analysis’ was conducted with a purposively selected subgroup of Co‐CMC caregivers, from each trajectory group, to provide an inductive framework of mental health adjustment. Distinguishing features between caregivers who demonstrated well, from below‐average mental health, were obtained through triangulating both units of analysis into ‘profiles’.

Over 70% of Co‐CMC (n = 35) reported below‐average (i.e., unwell) mental health, while caregivers with average or above average mental health (i.e., well) (n = 12) showed group declines after 6 months. Home care choices, positive orientations, familial support‐adaptations, and adapted employment qualitatively distinguished members of the ‘well’ group from the ‘unwell’, while financial concerns were unique descriptions to Co‐CMC in the ‘unwell’ group.

This study was the first in‐depth profile of mental health of Co‐CMC, based on prospective longitudinal data and qualitative descriptions to enhance understanding of the trajectories. The distinguishing factors can be used to screen and potentially prevent caregiver mental health problems, as well as identify interventions to promote thriving families.

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