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The Experience of Parental Caregiving for Children With Medical Complexity

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 se...

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Autores principales: Teicher, Jessica, Moore, Clara, Esser, Kayla, Weiser, Natalie, Arje, Danielle, Cohen, Eyal, Orkin, Julia
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10676025/
https://www.ncbi.nlm.nih.gov/pubmed/36475307
http://dx.doi.org/10.1177/00099228221142102
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author Teicher, Jessica
Moore, Clara
Esser, Kayla
Weiser, Natalie
Arje, Danielle
Cohen, Eyal
Orkin, Julia
author_facet Teicher, Jessica
Moore, Clara
Esser, Kayla
Weiser, Natalie
Arje, Danielle
Cohen, Eyal
Orkin, Julia
author_sort Teicher, Jessica
collection PubMed
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.
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spelling pubmed-106760252023-11-25 The Experience of Parental Caregiving for Children With Medical Complexity Teicher, Jessica Moore, Clara Esser, Kayla Weiser, Natalie Arje, Danielle Cohen, Eyal Orkin, Julia Clin Pediatr (Phila) Articles 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. SAGE Publications 2022-12-06 2023-06 /pmc/articles/PMC10676025/ /pubmed/36475307 http://dx.doi.org/10.1177/00099228221142102 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Articles
Teicher, Jessica
Moore, Clara
Esser, Kayla
Weiser, Natalie
Arje, Danielle
Cohen, Eyal
Orkin, Julia
The Experience of Parental Caregiving for Children With Medical Complexity
title The Experience of Parental Caregiving for Children With Medical Complexity
title_full The Experience of Parental Caregiving for Children With Medical Complexity
title_fullStr The Experience of Parental Caregiving for Children With Medical Complexity
title_full_unstemmed The Experience of Parental Caregiving for Children With Medical Complexity
title_short The Experience of Parental Caregiving for Children With Medical Complexity
title_sort experience of parental caregiving for children with medical complexity
topic Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10676025/
https://www.ncbi.nlm.nih.gov/pubmed/36475307
http://dx.doi.org/10.1177/00099228221142102
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