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.
BMC Palliat Care
; 23(1): 92, 2024 Apr 09.
Article
em En
| MEDLINE
| ID: mdl-38589835
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 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.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Limite:
Child
/
Humans
Idioma:
En
Ano de publicação:
2024
Tipo de documento:
Article