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Losing a child due to a life-limiting diagnosis—parental well-being and quality of life: nationwide survey
  1. Camilla Lykke1,2,
  2. Per Sjøgren1 and
  3. Ola Ekholm3
  1. 1Department of Oncology, Rigshospitalet, Copenhagen, Denmark
  2. 2Department of Oncology and Palliative Care, Nordsjællands Hospital, Hillerod, Denmark
  3. 3National Institute of Public Health, University of Southern Denmark, Copenhagen, Region Hovedstaden, Denmark
  1. Correspondence to Mrs Camilla Lykke, Department of Oncology, Rigshospitalet, Copenhagen, Denmark; camilla.charlotte.lykke{at}regionh.dk

Abstract

Objective Losing a child is burdensome with potential long-term impact on the parents’ well-being and quality of life. The aim was to investigate parental well-being and quality of life 3–5 years after losing a child due to life-limiting diagnoses and to identify associated factors in order to target future interventions.

Methods All parents, who lost a child (<18 years) due to life-limiting diagnoses in the period 2012–2014 in Denmark, were invited to complete a self-administered questionnaire. A seven-point Visual Digital Scale (VDS) was used to assess issues of well-being and quality of life including physical health, anxiety, depression and sleep quality which were combined into a cumulative symptom index. Associations were assessed by means of ordinal logistic regression models.

Results In all, 152 (38%) children were represented by 136 mothers and 57 fathers. Totally, 17.6% of the mothers and 14.0% of the fathers had ≥2 symptoms (assessed by the symptom index). Parents with lower education had 2.11 (95% CI: 1.01 to 4.40) times higher odds of having more symptoms than parents with higher education. Unmarried parents had 2.14 (95% CI: 1.03 to 4.42) times higher odds of having more symptoms than married parents. Ten per cent of the parents reported poor overall quality of life.

Conclusion According to the VDS, 1 out of 10 parents experienced poor overall quality of life 3–5 years after the loss. Every sixth had two or more symptoms assessed by the symptom index. Associated factors for poor quality of life suggest attention to particularly unmarried parents and parents with lower education.

  • quality of life
  • bereavement
  • paediatrics
  • terminal care

Data availability statement

Data are available upon reasonable request. All data relevant to the study are included in the article or uploaded as online supplemental information. Any requests for data sharing should be put in writing to the corresponding author.

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Data availability statement

Data are available upon reasonable request. All data relevant to the study are included in the article or uploaded as online supplemental information. Any requests for data sharing should be put in writing to the corresponding author.

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Footnotes

  • Contributors CL conceptualised and designed the study, carried out the initial analyses, drafted the manuscript and revised the manuscript. PS conceptualised and designed the study, supervised the study and critically reviewed the manuscript. OE conceptualised and supervised the study, carried out the analyses and critically reviewed the manuscript. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

  • Funding This study was funded by Helsefonden (Grant number 2016-6).

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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