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| 2. |
- Ander, Malin, et al.
(författare)
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Exploration of psychological distress experienced by survivors of adolescent cancer reporting a need for psychological support
- 2018
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Ingår i: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 13:4
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Tidskriftsartikel (refereegranskat)abstract
- Objective In this qualitative study, we aimed to provide an in-depth exploration of cancer-related psychological distress experienced by young survivors of cancer during adolescence reporting a need for psychological support.MethodsTwo individual interviews were held with ten young survivors of cancer diagnosed in adolescence. The interviews were audio-recorded and transcribed verbatim. Analysis followed the guidelines for inductive qualitative manifest content analysis.ResultsThe survivors described distress experienced during and after the end of treatment. Five categories comprising 14 subcategories were generated. The categories included: A tough treatment, Marked and hindered, Not feeling good enough, Struggling with the fragility of life, and finally, An ongoing battle with emotions.Conclusion Young survivors of adolescent cancer reporting a need for psychological support described feeling physically, socially, and mentally marked by the cancer experience. They struggled with powerlessness, insecurity, social disconnection, loneliness, and feelings of being unimportant and a failure, and had difficulties understanding and managing their experiences. These concerns should be addressed in psychological treatments for the population irrespective of which approach or model is used to understand survivors’ difficulties. A transdiagnostic approach targeting processes that underpin different manifestations of distress may be effective.
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| 4. |
- Kamsvåg-Magnusson, Tove, 1986-, et al.
(författare)
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Parents and children's perceptions of distress related to oral mucositis during haematopoietic stem cell transplantation
- 2014
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Ingår i: Acta Pædiatrica. - : Wiley. - 1651-2227 .- 0803-5253. ; 103:6, s. 630-636
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Tidskriftsartikel (refereegranskat)abstract
- AimOral mucositis is a common and debilitating side effect of haematopoietic stem cell transplantation. Our study investigated parents' and children's experiences of oral mucositis treatment and whether the parents' perceptions accurately reflected the children's views. MethodsWe analysed 71 questionnaires completed by the parents of children who had undergone haematopoietic stem cell transplantation, together with 38 questionnaires completed by children who were 7 years of age or over. ResultsThe parent proxy and child self-reports showed good to excellent agreement. For example, 86% of the parents and 83% of the children reported oral pain and 44% of the parents and 47% of the children reported difficulty swallowing often or very often. The majority of the parents (61%) were satisfied with the pain treatment that had been given to their child. However, the treatment provided for oral mucositis was not altogether consistent. ConclusionOral mucositis affected the majority of the children undergoing haematopoietic stem cell transplantation, causing considerable pain and discomfort. The parent proxy reports proved to be reliable and are an important supplement to child self-reports on symptoms related to oral mucositis. But there is a clear need to establish more evidence-based care for children suffering from oral mucositis.
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| 5. |
- Kassa, Ann-Marie, et al.
(författare)
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Children and adolescents with VACTERL association : health-related quality of life and psychological well-being in children and adolescents and their parents
- 2020
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Ingår i: Quality of Life Research. - : Springer Science and Business Media LLC. - 0962-9343 .- 1573-2649. ; 29:4, s. 913-924
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: VACTERL association is a rare and complex condition of congenital malformations, often requiring repeated surgery and entailing various physical sequelae. Due to scarcity of knowledge, the study aim was to investigate self-reported health-related quality of life (HRQoL), anxiety, depression and self-concept in children and adolescents with VACTERL association and self-reported anxiety and depression in their parents.METHODS: Patients aged 8-17 years with VACTERL association and their parents were recruited from three of four Swedish paediatric surgical centres during 2015-2019. The well-established validated questionnaires DISABKIDS, Beck Youth Inventories, Beck Anxiety Inventory and Beck Depression Inventory were sent to the families. Data were analysed using descriptives, t tests and multivariable analysis. Results were compared with norm groups and reference samples.RESULTS: The questionnaires were returned by 40 patients, 38 mothers and 33 fathers. The mean HRQoL was M = 80.4, comparable to children with asthma (M = 80.2) and diabetes (M = 79.5). Self-reported psychological well-being was comparable to the norm group of Swedish school children, and was significantly higher than a clinical sample. Factors negatively influencing children's HRQoL and psychological well-being were identified. The parents' self-reports of anxiety and depression were comparable to non-clinical samples.CONCLUSIONS: Although children and adolescents with VACTERL association reported similar HRQoL to those of European children with chronic conditions, their psychological well-being was comparable to Swedish school children in general. Nevertheless, some individuals among both children and parents were in need of extra support. This attained knowledge is valuable when counselling parents regarding the prognosis for children with VACTERL association.
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- Thorsell Cederberg, Jenny, et al.
(författare)
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A preliminary validation of the Swedish short version of the Avoidance and Fusion Questionnaire for Youth (AFQ-Y8) for children and adolescents with cancer
- 2018
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Ingår i: Journal of Contextual Behavioral Science. - : Elsevier BV. - 2212-1447. ; 10, s. 103-107
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Tidskriftsartikel (refereegranskat)abstract
- Psychological inflexibility constitutes a generalized vulnerability for psychopathology. Children and adolescents undergoing cancer treatment are faced with numerous physical and psychological stressors throughout their cancer trajectory. Most of the survivors show resilience but some groups report psychological ill-health and poor quality-of-life long-term. Psychological flexibility has been shown to mediate improvements in psychological health for cancer patients. The Avoidance and Fusion Questionnaire for Youth (AFQ-Y) is the most frequently used measure of psychological inflexibility in children and adolescents. It correlates with a wide range of measures of mental health and long-term functional behavior. The aim of the study was to investigate norm values, psychometric properties and factor structure of the AFQ-Y8 for children and adolescents with cancer. All children and adolescents, aged 7-18 years of age, undergoing cancer treatment in Sweden at the time of the study were invited to participate. Norm values, internal consistency, test-retest reliability and convergent validity were calculated and an exploratory factor analysis was conducted. 62 children participated. The mean of the AFQ-Y8 in the sample was 10.30 (5.75). Internal consistency was acceptable (alpha = 0.76), test-retest reliability was good (ICC = 0.64) and convergent validity was demonstrated (r = 0.42). Norm values are now available, and the psychometric properties supported, for the AFQ-Y8 for children and adolescents with cancer. This provides implications for the prevention and treatment of psychopathology for this population. However, the one-factor structure of the AFQ-Y8 was not unequivocally supported. The results from the PCA rather suggested a two-factor structure. Due to the small sample of the study, the results should be seen as preliminary and further validation is warranted, specifically with regards to factorial validity and sensitivity to change.
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| 7. |
- Thorsell Cederberg, Jenny, et al.
(författare)
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A preliminary validation of the swedish version of the pain catastrophizing scale for children (PCSC) for children and adolescents with cancer
- 2019
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Ingår i: Journal of Pain Research. - : DOVE MEDICAL PRESS LTD. - 1178-7090. ; 12, s. 1803-1811
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Tidskriftsartikel (refereegranskat)abstract
- © 2019 Cederberg et al. Objectives: Pain is reported as one of the most common and difficult symptoms for children and adolescents with cancer to cope with. Pain catastrophizing has been identified as a process clearly related to pain intensity and disability. The Pain Catastrophizing Scale for Children (PCS-C) has been validated in several languages and populations but remains to be validated in pediatric oncology. The aim of the study was to validate a Swedish version of the PCS-C for children and adolescents with cancer. Methods: All children, 7–18 years of age, being treated for cancer in Sweden at the time of the study were invited to participate. Study material was sent out to the registered address. Internal consistency, test–retest reliability and convergent validity were calculated. Factor structure was examined using principal component analysis (PCA). Descriptive statistics were used to investigate background data and norm values. Results: 61 children/adolescents were included in the analyses. The results did not support the original three-factor structure of the PCS-C, but rather suggested that a two-factor structure excluding item 8 best represented the data. The internal consistency of that solution was good (α=0.87), the test–rest reliability was excellent (ICC=0.75) and convergent validity was demonstrated (r=0.46). The mean (SD) for the PCS-C in the sample was 19.1 (9.2), without item 8. A statistically significant difference was shown between genders, where girls reported a higher level of pain catastrophizing than boys. No difference was found with regard to age. Discussion: The Swedish version of the PCS-C is now preliminarily validated for children and adolescents with cancer, for whom gender- and age-specific norm values are now available. Questions remain regarding the optimal factor structure of the PCS-C.
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| 8. |
- Thorsell-Cederberg, Jenny, et al.
(författare)
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Acceptance as a Mediator for Change in Acceptance and Commitment Therapy for Persons with Chronic Pain?
- 2016
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Ingår i: International Journal of Behavioral Medicine. - : Springer Science and Business Media LLC. - 1070-5503 .- 1532-7558. ; 23:1, s. 21-29
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Tidskriftsartikel (refereegranskat)abstract
- Background Cognitive behavior therapy (CBT) is considered effective for chronic pain, but little is known about active treatment components. Although acceptance correlates with better health outcomes in chronic pain patients, no study has examined its mediating effect in an experimental design. Purpose The aim of the present study is to investigate acceptance as a mediator in acceptance and commitment therapy (ACT), a third wave CBT intervention, for chronic pain. Method A bootstrapped cross product of coefficients approach was used on data from a previously published RCT evaluating ACT for chronic pain. To address the specificity of acceptance as a mediator, anxiety and depression were also tested as mediators. Outcome variables were satisfaction with life and physical functioning. Two change scores, preassessment to 6-month follow-up (n=53) and pre-assessment to 12-month follow-up (n=32), were used. Results Acceptance was found to mediate the effect of treatment on change in physical functioning from pre-assessment to follow-up at 6 months. Further, a trend was shown from pre-assessment to follow-up at 12 months. No indirect effect of treatment via acceptance was found for change in satisfaction with life. Conclusion This study adds to a small but growing body of research using mediation analysis to investigate mediating factors in the treatment of chronic pain. In summary, the results suggest that acceptance may have a mediating effect on change in physical functioning in ACT for persons with chronic pain. However, given the small sample size of the study, these findings need to be replicated.
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| 9. |
- Thorsell Cederberg, Jenny
(författare)
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Acceptance for persons suffering from pain : Evaluation of acceptance-based interventions for adults with chronic pain and children with cancer experiencing acute pain
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- It is increasingly clear that pain and emotions are closely interconnected. Pain does not only cause psychological distress, but psychological distress also amplifies pain through neurological mechanisms. Treatment of both chronic and acute pain would benefit from acknowledging the psychological mechanisms of pain neurophysiology. Psychological acceptance predicts increased pain tolerance and decreased pain intensity and discomfort in experimentally induced pain and improved physical and psychosocial functioning for persons with chronic pain.The overall aim of this thesis was to evaluate acceptance-based interventions for persons suffering from pain.In Study I the effect of a manualised ACT-based self-help intervention for adults with chronic pain was evaluated in an RCT (n=90). The results showed improvements in satisfaction with life, physical functioning and pain intensity for the ACT group. Both the ACT and the control group improved regarding depression and anxiety. In Study II the mediating effect of acceptance for treatment change was evaluated, using data from Study I (n=64). The results showed indirect effects of treatment via acceptance for physical functioning but not for satisfaction with life. In Studies III and IV, instruments to measure psychological flexibility in relation to pain were developed for children with cancer, and their parents respectively, using factor analysis. The results showed that a two-factor solution for the child scale (n=61) and a three-factor solution for the parent scale (n=243), best represented the data. In Study V, an acceptance-based intervention was preliminarily evaluated in a single-subject study (n=5) for children reporting pain during cancer treatment. The intervention consisted of an approximately 15-minute long pain exposure exercise. All participants reported reduced discomfort of pain, and three of the participants reported reduced pain intensity.The results suggest that a manualised ACT-based self-help intervention is a valuable addition to the treatment repertoire for persons with chronic pain and that acceptance may mediate the effect of treatment on physical functioning. Furthermore, instruments to measure acceptance in the context of acute pain in children with cancer are now available, although further validation is needed. Lastly, the results indicate that an acceptance-based intervention may help children undergoing cancer treatment to cope with pain.
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| 10. |
- Thorsell Cederberg, Jenny, et al.
(författare)
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An acceptance-based intervention for children and adolescents with cancer experiencing acute pain - a single-subject study
- 2017
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Ingår i: Journal of Pain Research. - 1178-7090. ; 10, s. 2195-2203
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Tidskriftsartikel (refereegranskat)abstract
- Background: Children and adolescents with cancer report pain as one of their most recurrent and troublesome symptoms throughout the cancer trajectory. Pain evokes psychological distress, which in turn has an amplifying effect on the pain experience. Acceptance-based interventions for experimentally induced acute pain predict increased pain tolerance, decreased pain intensity and decreased discomfort of pain. The aim of this study was to preliminarily evaluate an acceptance-based intervention for children and adolescents with cancer experiencing acute pain, with regard to feasibility and effect on pain intensity and discomfort of pain. Methods: This is a single-subject study with an AB design with a nonconcurrent multiple baseline. Children and adolescents aged four to 18 years undergoing cancer treatment at the Children's University Hospital, Uppsala, Sweden, reporting sustained acute pain were offered participation. Pain intensity and discomfort of pain were measured during baseline and at post-intervention. The intervention consisted of a pain exposure exercise lasting approximately 15 minutes. Results: Five children participated in the study. All participants completed the intervention and reported that it had helped them to cope with the pain in the moment. All participants reported decreased discomfort of pain at post-measurement, three of whom also reported decreased pain intensity. Conclusion: The results suggest that an acceptance-based intervention may help children and adolescents with cancer to cope with the pain that is often associated with cancer treatment in spite of pharmacological pain management. The results are tentative but promising and warrant further investigation.
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