Parents of children with cancer: sleep, distress and quality of life

Niki Rensen

    Research output: PhD ThesisPhD-Thesis - Research and graduation internal

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    Chapter 1 describes the background and aims of this thesis. Chapters 2,3 and 4 (Part I) describe the outcomes of the cross-sectional Amsterdam Parent Project. Chapter 2 provides a comprehensive overview of the health-related quality of life (HRQoL) of mothers and fathers of children with cancer (average time since diagnosis 3.5 years). Parents reported impairment on four out of 12 HRQoL domains. Mothers reported impairment on five additional domains, and they scored worse than fathers on half of all domains. The strongest and most consequent predictors of HRQoL outcomes in both parents were psychosocial factors Chapter 3 zooms in on the prevalence of sleep problems and their concurrence with distress in the same population of parents. In this group, the prevalence of clinically relevant sleep problems was 37%, compared to 16% in the general population. The majority (75%) of the parents with sleep problems reported clinical distress levels as well. Chapter 4 includes a comparison of maternal and paternal proxy reports of child’s HRQoL assessed in parental couples. On average, we found good agreement in paternal and maternal proxy ratings, and no significant differences between parents. However, when comparing the highest rating parent to the lowest rating parent (instead of concentrating on the difference between fathers and mothers), 25% of couples diverged widely in their scores. Chapters 5,6 and 7 (Part II) describe the outcomes of the longitudinal SLAAP-study. Chapter 5 introduces a conceptual model of parental sleep problems in childhood acute lymphoblastic leukemia (ALL). During the induction phase of treatment, 51% of parents reported clinically relevant sleep problems. After induction therapy, children with standard risk (SR) or medium risk (MR) ALL progress into their respective maintenance phase. Chapter 6 focuses on the effect of risk group stratification on parental sleep, distress, and HRQoL, as well as the additional burden for parents of MR patients during dexamethasone treatment. Across both risk groups, parents frequently reported sleep problems, distress, and HRQoL impairment. However, parents of MR patients reported clinical distress levels more often. We did not find differences in parental outcomes between a week with and without dexamethasone. Chapter 7 gives an overview of the longitudinal course of and the interrelationships between parental sleep, distress, and HRQoL up to three years after ALL diagnosis. Over time, average distress and HRQoL scores gradually improved to normal levels. Sleep problems also declined over time, but average scores were still elevated and 33% of parents reported clinically relevant sleep problems at the last time point. The presence of both sleep problems and distress cumulatively affected HRQoL over time. Risk factors were: experiencing little social support or parenting difficulties, shorter time since the child’s diagnosis, presence of chronic illness in the parent, parent-reported pain of the child, and having a child with MR/HR ALL. Chapter 8 discusses the findings and implications of this thesis. This thesis demonstrates the necessity of assessing family’s psychosocial risk profile as soon as possible after diagnosis in order to identify parents at risk of greater distress and sleep problems at a later stage. Furthermore, parental functioning, including sleep, should be monitored consequently both throughout and after treatment. Improving parental sleep might simultaneously improve distress and HRQoL, as well as benefit the child’s development and adjustment. A stepped care approach could be useful, with the provision of psychoeducation on sleep hygiene to everyone, and evidence-based interventions such as cognitive behavioral therapy for insomnia (CBT-i) delivered to parents with persistent sleep problems. Future research must explore which interventions are most effective to break the vicious cycle of sleep problems and distress, as well as improve HRQoL in parents of children with cancer.
    Original languageEnglish
    Awarding Institution
    • Vrije Universiteit Amsterdam
    • Kaspers, G.J.L., Supervisor, External person
    • Grootenhuis, Martha, Supervisor, External person
    • van Litsenburg, Raphaële Reine Lydie, Co-supervisor, External person
    Award date24 Nov 2021
    Print ISBNs9789463757874
    Publication statusPublished - 24 Nov 2021


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