Cargando…

“You Never Exhale Fully Because You're Not Sure What's NEXT”: Parents' Experiences of Stress Caring for Children With Chronic Conditions

Children with chronic conditions are experiencing improved survival worldwide, and it is well-known that their parents are stressed. Yet, despite this knowledge, parents continue to experience stress. Our study explored the lived experience of parental stress when caring for children with various ch...

Descripción completa

Detalles Bibliográficos
Autores principales: Smith, Stephanie, Tallon, Mary, Clark, Carrie, Jones, Lauren, Mörelius, Evalotte
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9271768/
https://www.ncbi.nlm.nih.gov/pubmed/35832577
http://dx.doi.org/10.3389/fped.2022.902655
_version_ 1784744742421004288
author Smith, Stephanie
Tallon, Mary
Clark, Carrie
Jones, Lauren
Mörelius, Evalotte
author_facet Smith, Stephanie
Tallon, Mary
Clark, Carrie
Jones, Lauren
Mörelius, Evalotte
author_sort Smith, Stephanie
collection PubMed
description Children with chronic conditions are experiencing improved survival worldwide, and it is well-known that their parents are stressed. Yet, despite this knowledge, parents continue to experience stress. Our study explored the lived experience of parental stress when caring for children with various chronic conditions to identify opportunities to potentially reduce stress for these parents. This was an exploratory qualitative study using semi-structured interviews. To ensure appropriate research priorities were addressed, the study was co-designed with consumer and stakeholder involvement. Twenty parents were interviewed. Parents were recruited through a recognized family support organization for children with various care needs in Western Australia. Interviews were audio-recorded, transcribed verbatim, anonymized, and analyzed using Interpretative Phenomenological Analysis. Two superordinate themes were identified: (1) Gut instinct to tipping point included parents as unheard experts and their experiences of stress and becoming overwhelmed. (2) Losses and gains covered the parents' identity and relationship challenges and coping strategies with their children's unpredictable conditions. Parents' experiences of stress caring for children with chronic conditions can be applied to the Job-Demand Control-Support Model for occupational stress. Not only does this application provide a useful framework for practitioners but it adds a unique perspective that reflects the dual role of parents in caring for their children with chronic conditions as a parent but also a professional with a 24/7 workload. The parents' experiences highlight a need for improved support access, effective communication between parents and health care professionals, discharge preparation and information provision, and regular screening of parental stress with a referral pathway.
format Online
Article
Text
id pubmed-9271768
institution National Center for Biotechnology Information
language English
publishDate 2022
publisher Frontiers Media S.A.
record_format MEDLINE/PubMed
spelling pubmed-92717682022-07-12 “You Never Exhale Fully Because You're Not Sure What's NEXT”: Parents' Experiences of Stress Caring for Children With Chronic Conditions Smith, Stephanie Tallon, Mary Clark, Carrie Jones, Lauren Mörelius, Evalotte Front Pediatr Pediatrics Children with chronic conditions are experiencing improved survival worldwide, and it is well-known that their parents are stressed. Yet, despite this knowledge, parents continue to experience stress. Our study explored the lived experience of parental stress when caring for children with various chronic conditions to identify opportunities to potentially reduce stress for these parents. This was an exploratory qualitative study using semi-structured interviews. To ensure appropriate research priorities were addressed, the study was co-designed with consumer and stakeholder involvement. Twenty parents were interviewed. Parents were recruited through a recognized family support organization for children with various care needs in Western Australia. Interviews were audio-recorded, transcribed verbatim, anonymized, and analyzed using Interpretative Phenomenological Analysis. Two superordinate themes were identified: (1) Gut instinct to tipping point included parents as unheard experts and their experiences of stress and becoming overwhelmed. (2) Losses and gains covered the parents' identity and relationship challenges and coping strategies with their children's unpredictable conditions. Parents' experiences of stress caring for children with chronic conditions can be applied to the Job-Demand Control-Support Model for occupational stress. Not only does this application provide a useful framework for practitioners but it adds a unique perspective that reflects the dual role of parents in caring for their children with chronic conditions as a parent but also a professional with a 24/7 workload. The parents' experiences highlight a need for improved support access, effective communication between parents and health care professionals, discharge preparation and information provision, and regular screening of parental stress with a referral pathway. Frontiers Media S.A. 2022-06-27 /pmc/articles/PMC9271768/ /pubmed/35832577 http://dx.doi.org/10.3389/fped.2022.902655 Text en Copyright © 2022 Smith, Tallon, Clark, Jones and Mörelius. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Pediatrics
Smith, Stephanie
Tallon, Mary
Clark, Carrie
Jones, Lauren
Mörelius, Evalotte
“You Never Exhale Fully Because You're Not Sure What's NEXT”: Parents' Experiences of Stress Caring for Children With Chronic Conditions
title “You Never Exhale Fully Because You're Not Sure What's NEXT”: Parents' Experiences of Stress Caring for Children With Chronic Conditions
title_full “You Never Exhale Fully Because You're Not Sure What's NEXT”: Parents' Experiences of Stress Caring for Children With Chronic Conditions
title_fullStr “You Never Exhale Fully Because You're Not Sure What's NEXT”: Parents' Experiences of Stress Caring for Children With Chronic Conditions
title_full_unstemmed “You Never Exhale Fully Because You're Not Sure What's NEXT”: Parents' Experiences of Stress Caring for Children With Chronic Conditions
title_short “You Never Exhale Fully Because You're Not Sure What's NEXT”: Parents' Experiences of Stress Caring for Children With Chronic Conditions
title_sort “you never exhale fully because you're not sure what's next”: parents' experiences of stress caring for children with chronic conditions
topic Pediatrics
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9271768/
https://www.ncbi.nlm.nih.gov/pubmed/35832577
http://dx.doi.org/10.3389/fped.2022.902655
work_keys_str_mv AT smithstephanie youneverexhalefullybecauseyourenotsurewhatsnextparentsexperiencesofstresscaringforchildrenwithchronicconditions
AT tallonmary youneverexhalefullybecauseyourenotsurewhatsnextparentsexperiencesofstresscaringforchildrenwithchronicconditions
AT clarkcarrie youneverexhalefullybecauseyourenotsurewhatsnextparentsexperiencesofstresscaringforchildrenwithchronicconditions
AT joneslauren youneverexhalefullybecauseyourenotsurewhatsnextparentsexperiencesofstresscaringforchildrenwithchronicconditions
AT moreliusevalotte youneverexhalefullybecauseyourenotsurewhatsnextparentsexperiencesofstresscaringforchildrenwithchronicconditions