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Parental Well-being in Pediatric Oncology in Sweden - Nationwide Evidence from the Swedish Registers

Liu, Yishan LU orcid (2026) In Lund University, Faculty of Medicine Doctoral Dissertation Series
Abstract
Despite the average 5-year survival rate exceeding 85%, childhood cancer is still the most common cause of disease-related death among children in Sweden. A cancer diagnosis is profoundly traumatic not only for children themselves, but also for the entire family, particularly the primary caregivers, their parents. This project aimed to investigate the extent to which a childhood cancer diagnosis affected parental mental and somatic health, and, in turn, whether the compromised parental mental well-being influenced the child’s subsequent cancer prognosis.
Using several Swedish nationwide registers, we identified all children aged 0–14 years diagnosed with cancer and linked them to their parents. For studies I, II, and IV, up to five... (More)
Despite the average 5-year survival rate exceeding 85%, childhood cancer is still the most common cause of disease-related death among children in Sweden. A cancer diagnosis is profoundly traumatic not only for children themselves, but also for the entire family, particularly the primary caregivers, their parents. This project aimed to investigate the extent to which a childhood cancer diagnosis affected parental mental and somatic health, and, in turn, whether the compromised parental mental well-being influenced the child’s subsequent cancer prognosis.
Using several Swedish nationwide registers, we identified all children aged 0–14 years diagnosed with cancer and linked them to their parents. For studies I, II, and IV, up to five parents of cancer-free children were randomly selected and matched to each parent of a child with cancer, conditional on their baseline characteristics. Information on parental outcomes was extracted from the National Patient Register and the Prescribed Drug Register, including hospital visits for mental health disorders, use of psychotropic medication, and the burden of somatic diseases. In study III, we compared the survival status of cancer-diagnosed children whose parents experienced mental illness after the child’s diagnosis with those whose parents remained free of mental illness.
It was found that parents of children with cancer experienced intense stress and had sustained mental health challenges. Both mothers and fathers showed elevated risks of mental health disorders, but with distinct patterns. Mothers exhibited a continually worsening mental health condition over seven years, whereas fathers demonstrated
a consistently elevated but stable risk. Psychotropic medication use also increased following the child’s cancer diagnosis, rising steadily among mothers and increasing sharply during the first year among fathers. Beyond mental health, parents experienced a substantial somatic disease burden, and this impact was long-lasting, recurrent, and involved multiple organ systems. Furthermore, a strong association was observed between parental mental wellbeing and child cancer prognosis, with newly onset illness particularly worsening child survival.
Overall, the diagnosis of childhood cancer profoundly and persistently affects both mental and physical health of parents, with especially notable deterioration in mothers’ long-term mental well-being. These findings highlight the unmet needs for supports and interventions to parents. Moreover, the strong association between parental mental illness and child survival outcomes underlines the importance of integrating family-centered interventions into standard pediatric cancer care. (Less)
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author
supervisor
opponent
  • Assistant Professor Smith, Robert David, University of Macau
organization
publishing date
type
Thesis
publication status
published
subject
keywords
Childhood Cancer, Parental mental disorder, Parental somatic health, survival and mortality, Register-based study, Epidemiolgy
in
Lund University, Faculty of Medicine Doctoral Dissertation Series
issue
2026:26
pages
79 pages
publisher
Lund University, Faculty of Medicine
defense location
Agardh föreläsningssal, CRC, Jan Waldenströms gata 35, Skånes Universitetssjukhus i Malmö. Join by Zoom: https://lu-se.zoom.us/j/66073490444
defense date
2026-03-11 09:00:00
ISSN
1652-8220
ISBN
978-91-8021-824-5
language
English
LU publication?
yes
id
62a44d81-5577-46f8-be34-899fd978a127
date added to LUP
2026-02-09 14:24:12
date last changed
2026-02-19 10:50:41
@phdthesis{62a44d81-5577-46f8-be34-899fd978a127,
  abstract     = {{Despite the average 5-year survival rate exceeding 85%, childhood cancer is still the most common cause of disease-related death among children in Sweden. A cancer diagnosis is profoundly traumatic not only for children themselves, but also for the entire family, particularly the primary caregivers, their parents. This project aimed to investigate the extent to which a childhood cancer diagnosis affected parental mental and somatic health, and, in turn, whether the compromised parental mental well-being influenced the child’s subsequent cancer prognosis.<br/>Using several Swedish nationwide registers, we identified all children aged 0–14 years diagnosed with cancer and linked them to their parents. For studies I, II, and IV, up to five parents of cancer-free children were randomly selected and matched to each parent of a child with cancer, conditional on their baseline characteristics. Information on parental outcomes was extracted from the National Patient Register and the Prescribed Drug Register, including hospital visits for mental health disorders, use of psychotropic medication, and the burden of somatic diseases. In study III, we compared the survival status of cancer-diagnosed children whose parents experienced mental illness after the child’s diagnosis with those whose parents remained free of mental illness.<br/>It was found that parents of children with cancer experienced intense stress and had sustained mental health challenges. Both mothers and fathers showed elevated risks of mental health disorders, but with distinct patterns. Mothers exhibited a continually worsening mental health condition over seven years, whereas fathers demonstrated<br/>a consistently elevated but stable risk. Psychotropic medication use also increased following the child’s cancer diagnosis, rising steadily among mothers and increasing sharply during the first year among fathers. Beyond mental health, parents experienced a substantial somatic disease burden, and this impact was long-lasting, recurrent, and involved multiple organ systems. Furthermore, a strong association was observed between parental mental wellbeing and child cancer prognosis, with newly onset illness particularly worsening child survival. <br/>Overall, the diagnosis of childhood cancer profoundly and persistently affects both mental and physical health of parents, with especially notable deterioration in mothers’ long-term mental well-being. These findings highlight the unmet needs for supports and interventions to parents. Moreover, the strong association between parental mental illness and child survival outcomes underlines the importance of integrating family-centered interventions into standard pediatric cancer care.}},
  author       = {{Liu, Yishan}},
  isbn         = {{978-91-8021-824-5}},
  issn         = {{1652-8220}},
  keywords     = {{Childhood Cancer; Parental mental disorder; Parental somatic health; survival and mortality; Register-based study; Epidemiolgy}},
  language     = {{eng}},
  number       = {{2026:26}},
  publisher    = {{Lund University, Faculty of Medicine}},
  school       = {{Lund University}},
  series       = {{Lund University, Faculty of Medicine Doctoral Dissertation Series}},
  title        = {{Parental Well-being in Pediatric Oncology in Sweden - Nationwide Evidence from the Swedish Registers}},
  url          = {{https://lup.lub.lu.se/search/files/241832039/Thesis_Yishan_Liu_LUCRIS.pdf}},
  year         = {{2026}},
}