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It's about living a normal life : parents' quality of life when their child has a life-threatening or life-limiting condition - a qualitative study

Kittelsen, Trine Brun ; Lorentsen, Vibeke Bruun ; Castor, Charlotte LU ; Lee, Anja ; Kvarme, Lisbeth Gravdal and Winger, Anette (2024) In BMC Palliative Care 23(1). p.92-92
Abstract

BACKGROUND: Pediatric palliative care (PPC) seeks to enhance the quality of life (QoL) for both children and their families. While most studies within PPC have focused on the ill child's QoL, less is known about parents' experiences of their own QoL. The aim of this study was to explore parents' QoL when their child has a life-threatening or life-limiting condition. METHODS: The study has a qualitative, hermeneutic phenomenological design inspired by van Manen's phenomenology of practice. In-depth interviews were conducted with 12 fathers and 12 mothers of children living with cancer or a genetic condition. A deeper understanding of parents' lived experiences was obtained through an adapted photo elicitation method. Two rounds of... (More)

BACKGROUND: Pediatric palliative care (PPC) seeks to enhance the quality of life (QoL) for both children and their families. While most studies within PPC have focused on the ill child's QoL, less is known about parents' experiences of their own QoL. The aim of this study was to explore parents' QoL when their child has a life-threatening or life-limiting condition. METHODS: The study has a qualitative, hermeneutic phenomenological design inspired by van Manen's phenomenology of practice. In-depth interviews were conducted with 12 fathers and 12 mothers of children living with cancer or a genetic condition. A deeper understanding of parents' lived experiences was obtained through an adapted photo elicitation method. Two rounds of thematic analysis were conducted, covering both the photo elicitation data, and interview data. RESULTS: The findings describe four themes related to parents' QoL: living a normal life, giving my child a good life, having time to fulfill siblings' needs, and feeling heard and respected in the health and social care system. CONCLUSIONS: The complexity of elements shaping parents' QoL is evident. The interconnectedness between parents, the ill child, siblings, and interactions with the health and social care system, highlights the need to understand and address diverse aspects in enhancing parents QoL.

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author
; ; ; ; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Children, Life-limiting, Life-threatening, Parents, Pediatric palliative care, Quality of life
in
BMC Palliative Care
volume
23
issue
1
pages
1 pages
publisher
BioMed Central (BMC)
external identifiers
  • pmid:38589835
  • scopus:85190352870
ISSN
1472-684X
DOI
10.1186/s12904-024-01417-3
language
English
LU publication?
yes
id
10a1afeb-f490-4cb7-b7c3-f3f106dc3374
date added to LUP
2024-04-29 11:20:50
date last changed
2024-05-13 12:39:37
@article{10a1afeb-f490-4cb7-b7c3-f3f106dc3374,
  abstract     = {{<p>BACKGROUND: Pediatric palliative care (PPC) seeks to enhance the quality of life (QoL) for both children and their families. While most studies within PPC have focused on the ill child's QoL, less is known about parents' experiences of their own QoL. The aim of this study was to explore parents' QoL when their child has a life-threatening or life-limiting condition. METHODS: The study has a qualitative, hermeneutic phenomenological design inspired by van Manen's phenomenology of practice. In-depth interviews were conducted with 12 fathers and 12 mothers of children living with cancer or a genetic condition. A deeper understanding of parents' lived experiences was obtained through an adapted photo elicitation method. Two rounds of thematic analysis were conducted, covering both the photo elicitation data, and interview data. RESULTS: The findings describe four themes related to parents' QoL: living a normal life, giving my child a good life, having time to fulfill siblings' needs, and feeling heard and respected in the health and social care system. CONCLUSIONS: The complexity of elements shaping parents' QoL is evident. The interconnectedness between parents, the ill child, siblings, and interactions with the health and social care system, highlights the need to understand and address diverse aspects in enhancing parents QoL.</p>}},
  author       = {{Kittelsen, Trine Brun and Lorentsen, Vibeke Bruun and Castor, Charlotte and Lee, Anja and Kvarme, Lisbeth Gravdal and Winger, Anette}},
  issn         = {{1472-684X}},
  keywords     = {{Children; Life-limiting; Life-threatening; Parents; Pediatric palliative care; Quality of life}},
  language     = {{eng}},
  month        = {{04}},
  number       = {{1}},
  pages        = {{92--92}},
  publisher    = {{BioMed Central (BMC)}},
  series       = {{BMC Palliative Care}},
  title        = {{It's about living a normal life : parents' quality of life when their child has a life-threatening or life-limiting condition - a qualitative study}},
  url          = {{http://dx.doi.org/10.1186/s12904-024-01417-3}},
  doi          = {{10.1186/s12904-024-01417-3}},
  volume       = {{23}},
  year         = {{2024}},
}