Lived Experiences Of Parents Caring For A Child With A Life-limiting Condition In Australia: A Qualitative Study.
Title
Lived Experiences Of Parents Caring For A Child With A Life-limiting Condition In Australia: A Qualitative Study.
Creator
Collins A; Hennessy-Anderson N; Hosking S; Hynson J; Remedios C; Thomas K
Identifier
DOI: 10.1177/0269216316634245
Publisher
Journal Of Palliative Medicine
Date
2016
Subject
Illness; Pediatric Palliative Care; Impact; Services; Cancer; Families; Support; Of-life; Public; Public Environmental & Occupational Health; Caregivers; Medicine General & Internal; Health Care Sciences & Services; Threatening Conditions
Pediatric Palliative Care; Caregiver; Experiences; Life-limiting Conditions; Qualitative
Description
BACKGROUND:
Experiential studies in paediatric palliative care are needed to enable an ongoing international agenda which supports the development of responsive family supports.
AIM:
To provide an in-depth exploration of the prevalent lived experiences of parents who are currently providing care for a child with a life-limiting condition in Australia.
DESIGN:
Cross-sectional, prospective, qualitative study guided by an advisory group and reported according to the consolidated criteria for reporting qualitative studies. Transcripts were subjected to a thematic analysis, underpinned by an interpretative phenomenological framework.
SETTING/PARTICIPANTS:
Purposively sampled parents (n = 14) recruited from a statewide paediatric hospice who self-identified as a 'primary caregiver' for one or more children and/or adolescents (⩽18 years) with a life-limiting condition.
RESULTS:
Four key themes represented the prevalent experiences of parents: (1) trapped inside the house, (2) the protector, (3) living with the shadow and (4) travelling a different pathway. They describe parents' physical and social isolation, exclusion from the workforce, pervasive grief and associated impacts to their health and well-being. Limited professional and diminished social supports resulted in full ownership of care responsibility. Yet, parents embraced their role as 'protector', reporting acquired meaning and purpose.
CONCLUSION:
This study builds upon the growing body of evidence available in paediatric palliative care internationally. The key themes highlight the substantial demand for both physical and emotional support beyond what is currently offered and call for the implementation of carefully planned support services and other societal initiatives which seek to alleviate the broad health impacts to caregivers.
Experiential studies in paediatric palliative care are needed to enable an ongoing international agenda which supports the development of responsive family supports.
AIM:
To provide an in-depth exploration of the prevalent lived experiences of parents who are currently providing care for a child with a life-limiting condition in Australia.
DESIGN:
Cross-sectional, prospective, qualitative study guided by an advisory group and reported according to the consolidated criteria for reporting qualitative studies. Transcripts were subjected to a thematic analysis, underpinned by an interpretative phenomenological framework.
SETTING/PARTICIPANTS:
Purposively sampled parents (n = 14) recruited from a statewide paediatric hospice who self-identified as a 'primary caregiver' for one or more children and/or adolescents (⩽18 years) with a life-limiting condition.
RESULTS:
Four key themes represented the prevalent experiences of parents: (1) trapped inside the house, (2) the protector, (3) living with the shadow and (4) travelling a different pathway. They describe parents' physical and social isolation, exclusion from the workforce, pervasive grief and associated impacts to their health and well-being. Limited professional and diminished social supports resulted in full ownership of care responsibility. Yet, parents embraced their role as 'protector', reporting acquired meaning and purpose.
CONCLUSION:
This study builds upon the growing body of evidence available in paediatric palliative care internationally. The key themes highlight the substantial demand for both physical and emotional support beyond what is currently offered and call for the implementation of carefully planned support services and other societal initiatives which seek to alleviate the broad health impacts to caregivers.
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
March 2016 List
Citation
Collins A; Hennessy-Anderson N; Hosking S; Hynson J; Remedios C; Thomas K, “Lived Experiences Of Parents Caring For A Child With A Life-limiting Condition In Australia: A Qualitative Study.,” Pediatric Palliative Care Library, accessed April 26, 2024, https://pedpalascnetlibrary.omeka.net/items/show/10571.