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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.

Every baby, child and adolescent will experience pain at times throughout their life. Despite its ubiquity, pain is a major challenge for individuals, families, healthcare professionals, and societies. Pain is often hidden and can go undiscussed or ignored. Undertreated, unrecognised, or poorly managed pain in childhood leads to important and long-lasting negative consequences that continue into adulthood. This undertreatment should not continue. We have the tools, expertise, and evidence to provide better treatment for childhood pain.In this Commission we present four transformative goals that will, if achieved, transform the lives of children with pain and their families. These goals, taken at face value, may seem simple and obvious. However, if the goals were easy to achieve there would be few, if any, young people reporting poorly managed acute pain, pain after surgery or procedures, or ongoing chronic pain. Pain is multifactorial, and influenced by biological, psychological and social factors, making it complex and difficult to treat effectively, especially in infants, children and adolescents. This Commission focusses on children from birth through to 24 years of age in developed countries.The first transformative goal is to 'make pain matter'. Here we argue that pain has not mattered enough, as evidenced by common failings in clinical practice, low levels of training and investment, and a lack of concern for issues of equity and equality. Despite some good examples of knowledge translation, we highlight that investment in a strong social science research base for paediatric pain will catapult us into a new era in which we can address the social and cultural context of pain.The second is to 'make pain understood' at a fundamental biological and psychological level. There has been excellent progress in mechanistic understandings of nociception and pain perception for both acute and chronic pain states but gaps in knowledge remain. Advances in developmental biology, in genetics, in psychology, and in nosology and classification will all help speed up the discovery in these areas. There is also a need for greater investment in larger international birth cohort studies that incorporate comprehensive pain-related measurement incorporated.The third is to 'make pain visible'. Pain can and should be assessed. We need to help improve understanding of optimal methods for pain assessment at throughout childhood and in all clinical scenarios. While subjective pain report is the primary and desirable method when this is possible, many of the methods and measures that are in common use can and should be improved. There has been development in understanding the biological correlates of pain, and in broader patient reported outcome variables that can expand our horizons. Finally, we should be more focussed on assessing outcomes that are important to patients, rather than those that are central to researchers and clinicians.The fourth is to 'make pain better' by advancing our knowledge of multiple treatment options in all a...

With the goal of studying perceived distress among adolescents recently diagnosed with cancer, 56 adolescents were interviewed by telephone 4 to 8 weeks after diagnosis. The interviews included a structured interview guide, the Hospital Anxiety and Depression Scale, and the subscales Mental Health and Vitality from SF-36. "Losing hair" and "missing leisure activities" were identified as the most prevalent aspects of distress, whereas "missing leisure activities" and "fatigue" were rated with the highest levels of distress. "Worry about not getting well," "mucositis," "nausea," "pain from procedures and treatments," and "worry about missing school" were rated as the overall worst aspects by most adolescents. Twelve percent reached the cutoff score for potential clinical anxiety and 21% for potential clinical depression. Ratings of Mental Health and Vitality were lower than norm values. Prevalence of pain from procedures/treatments was higher among those who scored in the clinical range of depression, and more adolescents who were treated at a local hospital scored in the clinical range of anxiety. The findings show that ratings of prevalence, levels, and aspects perceived as the worst are not necessarily in accordance, that adolescents scoring in the clinical range of psychological distress are in the minority, and that the adolescents experience reduced physical and mental well-being.

BackgroundA lack of longitudinal studies has hampered the understanding of the development of posttraumatic stress symptoms (PTSS) in parents of children diagnosed with cancer. This study examines level of PTSS and prevalence of posttraumatic stress disorder (PTSD) from shortly after diagnosis up to 5 years after end of treatment or child's death, in mothers and fathers.MethodsA design with seven assessments (T1–T7) was used. T1–T3 were administered during treatment and T4–T7 after end of treatment or child's death. Parents (N = 259 at T1; n = 169 at T7) completed the PTSD Checklist Civilian Version. Latent growth curve modeling was used to analyze the development of PTSS.ResultsA consistent decline in PTSS occurred during the first months after diagnosis; thereafter the decline abated, and from 3 months after end of treatment only minimal decline occurred. Five years after end of treatment, 19% of mothers and 8% of fathers of survivors reported partial PTSD. Among bereaved parents, corresponding figures were 20% for mothers and 35% for fathers, 5 years after the child's death.ConclusionsFrom 3 months after end of treatment the level of PTSS is stable. Mothers and bereaved parents are at particular risk for PTSD. The results are the first to describe the development of PTSS in parents of children diagnosed with cancer, illustrate that end of treatment is a period of vulnerability, and that a subgroup reports PTSD 5 years after end of treatment or child's death. © 2015 The Authors. Psycho‐Oncology published by John Wiley & Sons Ltd.

The main aim of this study was to investigate the occurrence of cancer-related posttraumatic stress disorder (PTSD) among parents of children on cancer treatment. A longitudinal design with assessments at one week (T1), two (T2), and four (T3) months after the child's diagnosis was used. Two hundred and fourteen parents (107 mothers, 107 fathers) participated at T1-T3. The PTSD Checklist Civilian (PCL-C), a self-report screening instrument for PTSD, was answered by parents over the telephone. According to the PCL-C symptom criteria method 33%, more mothers than fathers, score as potential cases of acute stress disorder (ASD) at T1, whereas 28% as potential cases of PTSD at T2 and 22% at T3. The levels of acute- and posttraumatic stress symptoms show a linear, descending pattern, and mothers report higher levels than fathers. Half of the parents who score as potential cases of ASD a week after the child's diagnosis score as potential cases of PTSD four months later. The findings illustrate that a group of parents of children with cancer experience serious psychological distress related to their child's disease. A traumatic stress perspective on childhood cancer should be applied to paediatric oncology care and appropriate psychosocial interventions should be offered to parents when needed.

Two years after diagnosis those struck by cancer during adolescence experience not only a number of negative, but also positive, consequences of the cancer disease and its treatment.

BackgroundA substantial proportion of parents of children on cancer treatment report psychological distress such as symptoms of post-traumatic stress (PTSS), depression, and anxiety. During their child’s treatment many parents also experience an economic burden.ObjectiveThe aim of this study was to evaluate the long-term efficacy of Internet-based guided self-help for parents of children on cancer treatment.MethodsThis study was a parallel randomized controlled trial comparing a 10-week Internet-based guided self-help program, including weekly support from a therapist via encrypted email, with a wait-list control condition. The intervention was based on cognitive behavior therapy (CBT) and focused on psychoeducation and skills to cope with difficult thoughts and feelings. Primary outcome was self-reported PTSS. Secondary outcomes were self-reported symptoms of depression, anxiety, health care consumption, and sick leave during the past month. Outcomes were assessed pre- and postintervention and at 12-month follow-up. Parents of children on cancer treatment were invited by health care personnel at pediatric oncology centers, and parents meeting the modified symptom criteria on the PCL-C were included in the study. Self-report assessments were provided on the Web.ResultsA total of 58 parents of children on cancer treatment (median months since diagnosis=3) were included in the study (intervention n=31 and control n=27). A total of 18 participants completed the intervention, and 16 participants in each group participated in the 12-month follow-up. Intention-to-treat analyses revealed significant effects in favor of the intervention on the primary outcome PTSS, with large between-group effect sizes at postassessment (d=0.89; 95% CI 0.35-1.43) and at 12-month follow-up (d=0.78; 95% CI 0.25-1.32). Significant effects in favor of the intervention on the secondary outcomes depression and anxiety were also observed. However, there was no evidence for intervention efficacy on health care consumption or sick leave.ConclusionsUsing the Internet to provide psychological interventions shows promise as an effective mode of delivery for parents reporting an increased level of PTSS and who consider Internet-based interventions as a viable option. Future research should corroborate these findings and also develop and evaluate interventions and policies that may help ameliorate the economic burden that parents may face during their child’s treatment for cancer.