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Long-term positive and negative psychological late effects for parents of childhood cancer survivors: A systematic review
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
Center of Psychiatry Research, Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden .
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2014 (English)In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 9, no 7, e103340Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2014. Vol. 9, no 7, e103340
Keyword [en]
adjustment, cancer, children, distress, late effects, parents, predictors
National Category
Public Health, Global Health, Social Medicine and Epidemiology Psychology
Research subject
Psychology
Identifiers
URN: urn:nbn:se:uu:diva-229100DOI: 10.1371/journal.pone.0103340ISI: 000341354800086OAI: oai:DiVA.org:uu-229100DiVA: diva2:735923
Available from: 2014-08-04 Created: 2014-07-30 Last updated: 2017-12-05Bibliographically approved
In thesis
1. Parents of Children with Cancer: Psychological Long-Term Consequences and Development of a Psychological Treatment for Parents of Survivors
Open this publication in new window or tab >>Parents of Children with Cancer: Psychological Long-Term Consequences and Development of a Psychological Treatment for Parents of Survivors
2016 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The aims of this thesis were to increase the knowledge about the long-term psychological consequences in parents of children diagnosed with cancer, including parents of childhood cancer survivors (CCSs) and bereaved parents, and to take the first steps towards developing a psychological treatment for parents of CCSs.

Study I was a systematic review synthesizing the literature on psychological long-term consequences in parents of CCSs. Study II had a longitudinal design assessing posttraumatic stress symptoms (PTSS) from shortly after the child’s diagnosis (T1, N=259) up to five years after end of the child’s treatment or death (T7, n=169). Study I and II concluded that while most parents show resilience in the long-term, a subgroup report high levels of general distress and/or PTSS. In Study III, interview data from the last assessment in the longitudinal project (T7, n=168) was used. Participants described particularly negative and/or positive experiences in relation to their child’s cancer, and results pointed to the wide range of such experiences involved in parenting a child with cancer. In Study IV and V, parents of CCSs reporting cancer-related psychological distress were included (N=15). In Study IV, a conceptualization of this distress was generated by aggregation of individual behavioral case formulations. The conceptualization consisted of two separate but overlapping paths describing development and maintenance of symptoms of traumatic stress and depressive symptoms. In Study V, cognitive behavior therapy (CBT) based on the individual case formulations were preliminarily evaluated in an open trial. The CBT appeared feasible, and at post-assessment participants reported significant decreases in PTSS (p<.001), depression (p<.001), and anxiety (p<.01) with medium to large effect sizes (Cohen’s d=0.65-0.92).

Findings indicate that psychological long-term consequences in parents of children with cancer consist of a broad range of negative as well as positive experiences, and that while most parents show resilience in the long-term, a subgroup report high levels of psychological distress. For parents of CCSs this distress is suggested to primarily consist of symptoms of traumatic stress and depression, and a preliminary evaluation of CBT targeting hypothesized maintaining mechanisms showed promise in terms of feasibility and treatment effect.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2016. 65 p.
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 1273
Keyword
Cancer and oncology, Children, Parents, Survivors, Cognitive behavior therapy, Posttraumatic stress symptoms, Depression, Positive psychological consequences
National Category
Medical and Health Sciences
Research subject
Medical Science
Identifiers
urn:nbn:se:uu:diva-306309 (URN)978-91-554-9745-3 (ISBN)
Public defence
2016-12-16, Auditorium minus, Museum Gustavianum, Akademigatan 3, Uppsala, 09:00 (Swedish)
Opponent
Supervisors
Projects
Behandling av traumatisk stress hos föräldrar till cancerdrabbade barn med kognitiv beteendeterapi via internetFörekomst, utveckling och behandling av posttraumatiskt stressymptom hos föräldrar till barn med cancerUtveckling och utvärdering av ett webbaserat psykologiskt självhjälpsprogram för föräldrar till barn som tidigare behandlats mot cancer
Funder
Swedish Research Council, K2011-70X-20836-04-4Swedish Research Council, K2008-70X-20836-01-3
Available from: 2016-11-24 Created: 2016-10-27 Last updated: 2016-11-28

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Ljungman, LisaCernvall, MartinGrönqvist, HelenaLjungman, Gustafvon Essen, Louise

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