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Development of parental distress in male and female caregivers of a child with cancer

Paeps, Marnik ; Irestorm, Elin LU orcid ; Schepers, Sasja ; van Litsenburg, Raphaele ; Maas, Anne ; van den Bergh, Esther ; Maurice-Stam, Heleen and Grootenhuis, Martha A. (2024) 25th IPOS World Congress of Psycho-Oncology In Journal of Psychosocial Oncology Research and Practice 6(1S)(149).
Abstract
Objectives: A cancer diagnosis in children impacts the whole family.
This study aims to assess the course and determinants of distress in
caregivers of a child with cancer.
Methods: Assessments of parental distress were offered to Dutch
speaking caregivers every 6 months as part of a psycho-social monitoring
program, using the Distress Thermometer for Parents (DT-P). Data was
available from august 2015 until august 2023 via the online KLIK PROM
portal. Data was extracted for each patient from diagnosis up until 6 years
after diagnosis. Linear mixed models was used to assess parental distress
over time since diagnoses within sex, and to assess determinants of
distress.
Results: Repeated distress... (More)
Objectives: A cancer diagnosis in children impacts the whole family.
This study aims to assess the course and determinants of distress in
caregivers of a child with cancer.
Methods: Assessments of parental distress were offered to Dutch
speaking caregivers every 6 months as part of a psycho-social monitoring
program, using the Distress Thermometer for Parents (DT-P). Data was
available from august 2015 until august 2023 via the online KLIK PROM
portal. Data was extracted for each patient from diagnosis up until 6 years
after diagnosis. Linear mixed models was used to assess parental distress
over time since diagnoses within sex, and to assess determinants of
distress.
Results: Repeated distress assessments in 3892 parents (of 2377
children, participation rate: 60%) resulted in 10772 assessments (4373 by
males, 6399 by females). Both sexes showed highest distress at diagnosis.
Female distress declined after diagnosis, dropped below the clinical cut-off
(4) after 2 years, and stabilized after 4 years. Male distress dropped below
the clinical cut-off after 1 year, stabilized after 2 years and declined further
after 4 years. Relapse of the cancer, having a chronic illness as a caregiver,
and experiencing parenting problems were the main determinants for
distress. Perceiving social support and living with a partner were
associated with less distress.
Conclusion and clinical implications: The trajectory of parental distress
from diagnosis into survivorship differs by sex of the caregiver. The course
and determinants can be used to tailor interventions. (Less)
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author
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organization
publishing date
type
Contribution to journal
publication status
published
subject
in
Journal of Psychosocial Oncology Research and Practice
volume
6(1S)
issue
149
article number
P43.3
publisher
Lippincott Williams & Wilkins
conference name
25th IPOS World Congress of Psycho-Oncology
conference dates
2024-09-24 - 2024-09-27
ISSN
2637-5974
DOI
10.1097/OR9.0000000000000149
language
English
LU publication?
yes
id
4238385d-3a9d-4ebf-a82e-adfdad58ab3b
date added to LUP
2025-08-12 01:06:23
date last changed
2025-08-12 09:09:29
@misc{4238385d-3a9d-4ebf-a82e-adfdad58ab3b,
  abstract     = {{Objectives: A cancer diagnosis in children impacts the whole family.<br/>This study aims to assess the course and determinants of distress in<br/>caregivers of a child with cancer.<br/>Methods: Assessments of parental distress were offered to Dutch<br/>speaking caregivers every 6 months as part of a psycho-social monitoring<br/>program, using the Distress Thermometer for Parents (DT-P). Data was<br/>available from august 2015 until august 2023 via the online KLIK PROM<br/>portal. Data was extracted for each patient from diagnosis up until 6 years<br/>after diagnosis. Linear mixed models was used to assess parental distress<br/>over time since diagnoses within sex, and to assess determinants of<br/>distress.<br/>Results: Repeated distress assessments in 3892 parents (of 2377<br/>children, participation rate: 60%) resulted in 10772 assessments (4373 by<br/>males, 6399 by females). Both sexes showed highest distress at diagnosis.<br/>Female distress declined after diagnosis, dropped below the clinical cut-off<br/>(4) after 2 years, and stabilized after 4 years. Male distress dropped below<br/>the clinical cut-off after 1 year, stabilized after 2 years and declined further<br/>after 4 years. Relapse of the cancer, having a chronic illness as a caregiver,<br/>and experiencing parenting problems were the main determinants for<br/>distress. Perceiving social support and living with a partner were<br/>associated with less distress.<br/>Conclusion and clinical implications: The trajectory of parental distress<br/>from diagnosis into survivorship differs by sex of the caregiver. The course<br/>and determinants can be used to tailor interventions.}},
  author       = {{Paeps, Marnik and Irestorm, Elin and Schepers, Sasja and van Litsenburg, Raphaele and Maas, Anne and van den Bergh, Esther and Maurice-Stam, Heleen and Grootenhuis, Martha A.}},
  issn         = {{2637-5974}},
  language     = {{eng}},
  note         = {{Conference Abstract}},
  number       = {{149}},
  publisher    = {{Lippincott Williams & Wilkins}},
  series       = {{Journal of Psychosocial Oncology Research and Practice}},
  title        = {{Development of parental distress in male and female caregivers of a child with cancer}},
  url          = {{http://dx.doi.org/10.1097/OR9.0000000000000149}},
  doi          = {{10.1097/OR9.0000000000000149}},
  volume       = {{6(1S)}},
  year         = {{2024}},
}