No wrong decisions in an all-wrong situation. A qualitative study on the lived experiences of families of children with diffuse intrinsic pontine glioma.

De Clercq, Eva; Grotzer, Michael; Landolt, Markus A; von Helversen, Bettina; Flury, Maria; Rössler, Jochen; Kurzo, Andrea; Streuli, Jürg (2022). No wrong decisions in an all-wrong situation. A qualitative study on the lived experiences of families of children with diffuse intrinsic pontine glioma. Pediatric blood & cancer, 69(9), e29792. Wiley-Liss 10.1002/pbc.29792

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BACKGROUND

Diffuse intrinsic pontine glioma (DIPG) is a rare, but lethal pediatric brain tumor with a median survival of less than 1 year. Existing treatment may prolong life and control symptoms, but may cause toxicity and side effects. In order to improve child- and family-centered care, we aimed to better understand the treatment decision-making experiences of parents, as studies on this topic are currently lacking.

PROCEDURE

The data for this study came from 24 semistructured interviews with parents whose children were diagnosed with DIPG in two children's hospitals in Switzerland and died between 2000 and 2016. Analysis of the dataset was done using reflexive thematic analysis.

RESULTS

For most parents, the decision for or against treatment was relatively straightforward given the fatality of the tumor and the absence of treatment protocols. Most of them had no regrets about their decision for or against treatment. The most distressing factor for them was observing their child's gradual loss of independence and informing them about the inescapability of death. To counter this powerlessness, many parents opted for complementary or alternative medicine in order to "do something." Many parents reported psychological problems in the aftermath of their child's death and coping strategies between mothers and fathers often differed.

CONCLUSION

The challenges of DIPG are unique and explain why parental and shared decision-making is different in DIPG compared to other cancer diagnoses. Considering that treatment decisions shape parents' grief trajectory, clinicians should reassure parents by framing treatment decisions in terms of family's deeply held values and goals.

Item Type:

Journal Article (Original Article)

Division/Institute:

04 Faculty of Medicine > Department of Gynaecology, Paediatrics and Endocrinology (DFKE) > Clinic of Paediatric Medicine
04 Faculty of Medicine > Department of Gynaecology, Paediatrics and Endocrinology (DFKE) > Clinic of Paediatric Medicine > Paediatric Haematology/Oncology
04 Faculty of Medicine > Pre-clinic Human Medicine > BioMedical Research (DBMR) > DBMR Forschung Mu35 > Forschungsgruppe Hämatologie / Onkologie (Pädiatrie)
04 Faculty of Medicine > Pre-clinic Human Medicine > BioMedical Research (DBMR) > DBMR Forschung Mu35 > Forschungsgruppe Hämatologie / Onkologie (Pädiatrie)

UniBE Contributor:

Rössler, Jochen Karl

Subjects:

300 Social sciences, sociology & anthropology > 360 Social problems & social services
600 Technology > 610 Medicine & health

ISSN:

1545-5009

Publisher:

Wiley-Liss

Language:

English

Submitter:

Anette van Dorland

Date Deposited:

03 Jun 2022 09:20

Last Modified:

12 Dec 2022 10:06

Publisher DOI:

10.1002/pbc.29792

PubMed ID:

35652529

Uncontrolled Keywords:

DIPG coping strategies death decision-making lived experiences regret

BORIS DOI:

10.48350/170429

URI:

https://boris.unibe.ch/id/eprint/170429

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