“I need everybody to understand that he's a whole child”: A mixed-methods study exploring caregivers' experiences with their children with medical complexities

Abstract

Purpose

Children with medical complexities (CMC) access medical care at high rates and rely heavily on caregivers for daily care. Little research has explored the medical care experiences of caregivers of CMC to understand the holistic impact on the caregiver and their children. The goal of this study was to understand the experiences and challenges faced by CMC and their caregivers, explore the impact of COVID-19 on this population, and highlight the suggestions caregivers have to improve medical care for their children.

Design and methods

We conducted an explanatory sequential mixed method study utilizing surveys (n = 149) and in-depth interviews (n = 26) with a subset of survey participants. Descriptive and inferential quantitative analysis strategies as well as qualitative thematic and content analysis techniques were used to analyze the survey and interview data.

Results

Our findings included insights such as the frequent need to access medical care/specialists, the demand and emotional process of caring for CMC, the risk of pediatric medical trauma and stress, the unique impact of COVID-19 on this population, challenges navigating medical insurance, and the impact of the medical provider and system qualities on overall experiences. We also had findings related to the personal challenges associated with caregiving for CMC, caregiver coping and advocacy, and suggestions for improving care for CMC.

Conclusions

These findings suggest a need for improved practices and policies to support CMC and their families.

Practice implications

This study identifies opportunities for healthcare professionals to learn from the experiences of caregivers of CMC.