Illness-related communication between siblings and parents of children with chronic illness and life-limiting conditions: A qualitative analysis.

chronic illness family communication illness-related communication life limiting condition sibling

Journal

Palliative & supportive care
ISSN: 1478-9523
Titre abrégé: Palliat Support Care
Pays: England
ID NLM: 101232529

Informations de publication

Date de publication:
11 Oct 2024
Historique:
medline: 11 10 2024
pubmed: 11 10 2024
entrez: 11 10 2024
Statut: aheadofprint

Résumé

Having a brother or sister who has a chronic illness (lasting >6 months and requiring long-term care) or life-limiting condition (LLC; where cure is highly unlikely and the child is expected to die) has major impacts on siblings. Parent-sibling illness-related communication may contribute to siblings' capacity to cope. In this study, we aimed to explore parent-sibling illness-related communication, from the perspectives of parents and siblings. We also aimed to qualitatively compare participants' responses according to illness group (chronic illness vs. LLCs). We collected qualitative data from siblings (32 with a brother/sister with a chronic illness, 37 with a brother/sister with an LLC) and parents of a child with a chronic illness ( Two-thirds of siblings expressed satisfaction with their family's illness-related communication. Siblings typically reported satisfaction with communication when it was open and age-appropriate, and reported dissatisfaction when information was withheld or they felt overwhelmed with more information than they could manage. Parents generally favored an open communication style with the siblings, though this was more common among parents of children with an LLC than chronic illness. Our findings show that while many siblings shared that they felt satisfied with familial illness-related communication, parents should enquire with the siblings about their communication preferences in order to tailor illness-related information to the child's maturity level, distress, and age.

Sections du résumé

BACKGROUND BACKGROUND
Having a brother or sister who has a chronic illness (lasting >6 months and requiring long-term care) or life-limiting condition (LLC; where cure is highly unlikely and the child is expected to die) has major impacts on siblings. Parent-sibling illness-related communication may contribute to siblings' capacity to cope.
OBJECTIVES OBJECTIVE
In this study, we aimed to explore parent-sibling illness-related communication, from the perspectives of parents and siblings. We also aimed to qualitatively compare participants' responses according to illness group (chronic illness vs. LLCs).
METHODS METHODS
We collected qualitative data from siblings (32 with a brother/sister with a chronic illness, 37 with a brother/sister with an LLC) and parents of a child with a chronic illness (
RESULTS RESULTS
Two-thirds of siblings expressed satisfaction with their family's illness-related communication. Siblings typically reported satisfaction with communication when it was open and age-appropriate, and reported dissatisfaction when information was withheld or they felt overwhelmed with more information than they could manage. Parents generally favored an open communication style with the siblings, though this was more common among parents of children with an LLC than chronic illness.
SIGNIFICANCE OF RESULTS CONCLUSIONS
Our findings show that while many siblings shared that they felt satisfied with familial illness-related communication, parents should enquire with the siblings about their communication preferences in order to tailor illness-related information to the child's maturity level, distress, and age.

Identifiants

pubmed: 39390958
doi: 10.1017/S1478951524001056
pii: S1478951524001056
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

1-7

Auteurs

Lauren Kelada (L)

Discipline of Paediatrics and Child Health, School of Clinical Medicine, UNSW Sydney, Kensington, NSW, Australia.
Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia.

Tiina Jaaniste (T)

Discipline of Paediatrics and Child Health, School of Clinical Medicine, UNSW Sydney, Kensington, NSW, Australia.
Department of Palliative Care, Sydney Children's Hospital, Randwick, NSW, Australia.

Anjali Cuganesan (A)

Discipline of Paediatrics and Child Health, School of Clinical Medicine, UNSW Sydney, Kensington, NSW, Australia.
Department of Palliative Care, Sydney Children's Hospital, Randwick, NSW, Australia.

Wei Ling Audrey Chin (WLA)

Discipline of Paediatrics and Child Health, School of Clinical Medicine, UNSW Sydney, Kensington, NSW, Australia.
Department of Palliative Care, Sydney Children's Hospital, Randwick, NSW, Australia.

Sarah Caellainn Tan (S)

Discipline of Paediatrics and Child Health, School of Clinical Medicine, UNSW Sydney, Kensington, NSW, Australia.
Department of Palliative Care, Sydney Children's Hospital, Randwick, NSW, Australia.

Joanna Wu (J)

Discipline of Paediatrics and Child Health, School of Clinical Medicine, UNSW Sydney, Kensington, NSW, Australia.
Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia.

Robert Ilin (R)

Discipline of Paediatrics and Child Health, School of Clinical Medicine, UNSW Sydney, Kensington, NSW, Australia.
Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia.

Eden Robertson (E)

Discipline of Paediatrics and Child Health, School of Clinical Medicine, UNSW Sydney, Kensington, NSW, Australia.
Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia.

Donna Drew (D)

Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia.

Claire E Wakefield (CE)

Discipline of Paediatrics and Child Health, School of Clinical Medicine, UNSW Sydney, Kensington, NSW, Australia.
Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia.

Classifications MeSH