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Parents of Children with Cancer: Psychological Long-Term Consequences and Development of a Psychological Treatment for Parents of Survivors
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Department of public health and caring sciences. (Clinical psychology in healthcare, Klinisk psykologi i hälso- och sjukvård)
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 [en]
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: urn:nbn:se:uu:diva-306309ISBN: 978-91-554-9745-3OAI: oai:DiVA.org:uu-306309DiVA: diva2:1040612
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
List of papers
1. Long-term positive and negative psychological late effects for parents of childhood cancer survivors: A systematic review
Open this publication in new window or tab >>Long-term positive and negative psychological late effects for parents of childhood cancer survivors: A systematic review
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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.

Keyword
adjustment, cancer, children, distress, late effects, parents, predictors
National Category
Public Health, Global Health, Social Medicine and Epidemiology Psychology
Research subject
Psychology
Identifiers
urn:nbn:se:uu:diva-229100 (URN)10.1371/journal.pone.0103340 (DOI)000341354800086 ()
Available from: 2014-08-04 Created: 2014-07-30 Last updated: 2016-10-28Bibliographically approved
2. Does time heal all wounds? A longitudinal study of the development of posttraumatic stress symptoms in parents of survivors of childhood cancer and bereaved parents
Open this publication in new window or tab >>Does time heal all wounds? A longitudinal study of the development of posttraumatic stress symptoms in parents of survivors of childhood cancer and bereaved parents
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2015 (English)In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 24, no 12, 1792-1798 p.Article in journal (Refereed) Published
Abstract [en]

Background: A 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. Methods: A 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. Results: A 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. Conclusions: From 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.

National Category
Cancer and Oncology Psychology
Identifiers
urn:nbn:se:uu:diva-256519 (URN)10.1002/pon.3856 (DOI)000368435000027 ()26042579 (PubMedID)
Note

De två första författarna delar förstaförfattarskapet.

Available from: 2015-06-24 Created: 2015-06-24 Last updated: 2016-10-28Bibliographically approved
3. Impressions that last: Particularly negative and positive experiences reported by parents five years after the end of a child's successful cancer treatment or death
Open this publication in new window or tab >>Impressions that last: Particularly negative and positive experiences reported by parents five years after the end of a child's successful cancer treatment or death
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2016 (English)In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 11, no 6, e0157076Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: To describe the experience of parenting a child diagnosed with cancer by examining particularly negative and positive experiences reported by parents of childhood cancer survivors and parents of children lost to cancer.

METHODS: 168 parents (88 mothers, 80 fathers) participated. Data were collected five years after the end of successful treatment or the child's death. The parents' experiences were identified by open-ended semi-structured questions about particularly negative and positive experiences of the child's cancer. An inductive approach was used in which the manifest verbal content of the answers was analysed using content analysis.

RESULTS: The analysis revealed eight categories of negative experience (child late effects; distressing events; healthcare; impaired relationships; long-term psychological consequences; own reactions; surrounding institutions; the fact that the child got cancer) and seven categories of positive experience (healthcare; improved relationships; long-term consequences for the child; personal development; support systems; treatment outcome; unexpected joy). The categories were related to past events or to the present situation. The findings indicate variations in experiences between parents of survivors and bereaved parents, and between fathers and mothers, as some experiences were only reported by parents of survivors and some experiences were only reported by mothers.

CONCLUSIONS: The results highlight the importance of past and present events to parents, and accordingly the long-lasting impact of paediatric cancer on parents. The results also point to the wide range of negative as well as positive experiences involved in parenting a child diagnosed with cancer, and provide a comprehensive understanding of the overall experience for parents of children with cancer. Specifically, the findings give guidance to healthcare providers by illustrating the need to provide healthcare personnel with continuous training in communication skills, offering parents opportunities to meet other parents in the same situation and increasing the access to psychosocial supportive services and psychological care.

National Category
Applied Psychology
Identifiers
urn:nbn:se:uu:diva-296022 (URN)10.1371/journal.pone.0157076 (DOI)000377561000061 ()27272318 (PubMedID)
Funder
Swedish Research Council, K2008-70X-20836-01- 3 K2011-70X-20836-04-4Swedish Cancer Society, 2007/1015 2010/726Swedish Childhood Cancer Foundation, PROJ08/010
Available from: 2016-06-13 Created: 2016-06-13 Last updated: 2016-10-28Bibliographically approved
4. A cognitive behavioral conceptualization of cancer-related psychological distress in parents of childhood cancer survivors
Open this publication in new window or tab >>A cognitive behavioral conceptualization of cancer-related psychological distress in parents of childhood cancer survivors
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(English)Manuscript (preprint) (Other academic)
National Category
Public Health, Global Health, Social Medicine and Epidemiology Psychology Cancer and Oncology
Identifiers
urn:nbn:se:uu:diva-305873 (URN)
Available from: 2016-10-24 Created: 2016-10-24 Last updated: 2016-10-28
5. Development and preliminary evaluation of individualized face-to-face cognitive behavior therapy for psychological distress in parents of childhood cancer survivors
Open this publication in new window or tab >>Development and preliminary evaluation of individualized face-to-face cognitive behavior therapy for psychological distress in parents of childhood cancer survivors
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(English)Manuscript (preprint) (Other academic)
National Category
Cancer and Oncology Psychology Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:uu:diva-305925 (URN)
Available from: 2016-10-24 Created: 2016-10-24 Last updated: 2016-10-28

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