The Experience of Parental Caregiving for Children With Medical Complexity

Title

The Experience of Parental Caregiving for Children With Medical Complexity

Creator

Teicher J; Moore C; Esser K; Weiser N; Arje D; Cohen E; Orkin J

Publisher

Clinical Pediatrics

Date

2022

Description

Children with medical complexity (CMC) have complex chronic conditions with significant functional impairment, contributing to high caregiving demand. This study seeks to explore impacts of parental caregiving for CMC. Fifteen caregivers of CMC followed at a tertiary care hospital participated in semi-structured interviews. Interviews were concurrently analyzed using a qualitative description framework until thematic saturation was reached. Codes were grouped by shared concepts to clarify emergent findings. Four affected domains of parental caregiver experience with associated subthemes (in parentheses) were identified: personal (identity, physical health, mental health), family (marriage, siblings, family quality of life), social (time limitations, isolating lived experience), and financial (employment, medical costs, accessibility costs). Despite substantial challenges, caregivers identified two core determinants of personal resilience: others' support (hands-on, interpersonal, informational, material) and a positive outlook (self-efficacy, self-compassion, reframing expectations). Further research is needed to understand the unique needs and strengths of caregivers for this vulnerable population.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

2023 SE1 - Parent Perspectives

Citation

Teicher J; Moore C; Esser K; Weiser N; Arje D; Cohen E; Orkin J, “The Experience of Parental Caregiving for Children With Medical Complexity,” Pediatric Palliative Care Library, accessed March 28, 2024, https://pedpalascnetlibrary.omeka.net/items/show/18602.