Abstract
Increasing survival rates in childhood cancer have yielded a growing population of parents of childhood cancer survivors (CCSs). This systematic review compiles the literature on positive and negative long-term psychological late effects for parents of CCSs, reported at least five years after the child's diagnosis and/or two years after the end of the child's treatment. Systematic searches were made in the databases CINAHL, EMBASE, PsycINFO, and PubMed. Fifteen studies, published between 1988 and 2010, from 12 projects were included. Thirteen studies used quantitative methodology, one quantitative and qualitative methodology, and one qualitative methodology. A total of 1045 parents participated in the reviewed studies. Mean scores were within normal ranges for general psychological distress, coping, and family functioning. However, a substantial subgroup reported a clinical level of general psychological distress, and 21–44% reported a severe level of posttraumatic stress symptoms. Worry, disease-related thoughts and feelings, marital strains, as well as posttraumatic growth was reported. Several factors were associated with the long-term late effects, such as parents' maladaptive coping during earlier stages of the childs disease trajectory and children's current poor adjustment. Quality assessments of reviewed studies and clinical implications of findings are discussed and recommendations for future research are presented.
Highlights
Over the past 20 years advancements in cancer treatment have increased survival rates for childhood cancer and the average fiveyear survival rate is approaching 80% [1]
Regarding psychological late effects results have been mixed, with some studies reporting levels of psychological health comparable to controls [5], while others report that a subgroup of cancer survivors (CCSs) experience persistent, or even increasing, psychological distress from 10 years up to decades after diagnosis [6]
The review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement (PRISMA), consisting of an evidence-based set of items for conduction and reporting systematic reviews and meta-analyses
Summary
Over the past 20 years advancements in cancer treatment have increased survival rates for childhood cancer and the average fiveyear survival rate is approaching 80% [1]. Today one in 650 adolescents and young adults is a childhood cancer survivor (CCS), and roughly twice as many are parents of CCSs [2]. Regarding psychological late effects results have been mixed, with some studies reporting levels of psychological health comparable to controls [5], while others report that a subgroup of CCSs experience persistent, or even increasing, psychological distress from 10 years up to decades after diagnosis [6]. The literature on psychological health among parents of CCSs has reported elevated levels of psychological distress such as posttraumatic stress symptoms (PTSS), depression, anxiety, sleep disturbances, somatic symptoms, fear of recurrence, extensive worry, and fatigue [7,8,9,10].
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