Cargando…
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...
Autores principales: | , , , , , , |
---|---|
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 |
_version_ | 1785149893011046400 |
---|---|
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. |
format | Online Article Text |
id | pubmed-10676025 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | SAGE Publications |
record_format | MEDLINE/PubMed |
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 |
work_keys_str_mv | AT teicherjessica theexperienceofparentalcaregivingforchildrenwithmedicalcomplexity AT mooreclara theexperienceofparentalcaregivingforchildrenwithmedicalcomplexity AT esserkayla theexperienceofparentalcaregivingforchildrenwithmedicalcomplexity AT weisernatalie theexperienceofparentalcaregivingforchildrenwithmedicalcomplexity AT arjedanielle theexperienceofparentalcaregivingforchildrenwithmedicalcomplexity AT coheneyal theexperienceofparentalcaregivingforchildrenwithmedicalcomplexity AT orkinjulia theexperienceofparentalcaregivingforchildrenwithmedicalcomplexity AT teicherjessica experienceofparentalcaregivingforchildrenwithmedicalcomplexity AT mooreclara experienceofparentalcaregivingforchildrenwithmedicalcomplexity AT esserkayla experienceofparentalcaregivingforchildrenwithmedicalcomplexity AT weisernatalie experienceofparentalcaregivingforchildrenwithmedicalcomplexity AT arjedanielle experienceofparentalcaregivingforchildrenwithmedicalcomplexity AT coheneyal experienceofparentalcaregivingforchildrenwithmedicalcomplexity AT orkinjulia experienceofparentalcaregivingforchildrenwithmedicalcomplexity |