| 1. |
- 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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| 2. |
- Ljungman, Lisa, 1981-, et al.
(författare)
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An open trial of individualized face-to-face cognitive behavior therapy for psychological distress in parents of children after end of treatment for childhood cancer including a cognitive behavioral conceptualization
- 2018
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Ingår i: PeerJ. - : PeerJ. - 2167-8359. ; 6
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Tidskriftsartikel (refereegranskat)abstract
- ObjectiveA subgroup of parents of children who have been treated for childhood cancer report high levels of psychological distress. To date there is no empirically supported psychological treatment targeting cancer-related psychological distress in this population. The aim of the current study was to test the feasibility and preliminarily evaluate the effect of individualized face-to-face cognitive behavior therapy (CBT) for parents of children after the end of treatment for childhood cancer. A secondary aim was to present a cognitive behavioral conceptualization of cancer-related distress for these parents.MethodsAn open trial was conducted where 15 parents of children who had completed successful treatment for cancer three months to five years earlier and who reported psychological distress related to a child’s previous cancer disease were provided CBT at a maximum of 15 sessions. Participants were assessed at baseline, post-intervention, and three-month follow-up using self-reported psychological distress (including posttraumatic stress symptoms (PTSS), depression, and anxiety) and the diagnostic Mini-International Neuropsychiatric Interview. Feasibility outcomes relating to recruitment, data collection, and delivery of the treatment were also examined. Individual case formulations for each participant guided the intervention and these were aggregated and presented in a conceptualization detailing core symptoms and their suggested maintenance mechanisms.ResultsA total of 93% of the participants completed the treatment and all of them completed the follow-up assessment. From baseline to post-assessment, parents reported significant improvements in PTSS, depression, and anxiety with medium to large effect sizes (Cohen’s d = 0.65–0.92). Results were maintained or improved at a three-month follow-up. At baseline, seven (47%) participants fulfilled the diagnostic criteria for major depressive disorder and four (29%) fulfilled the criteria for posttraumatic stress disorder, compared to none at a post-assessment and a follow-up assessment. The resulting cognitive behavioral conceptualization suggests traumatic stress and depression as the core features of distress, and avoidance and inactivity is suggested as the core maintenance mechanisms.ConclusionThe treatment was feasible and acceptable to the participants. Significant improvements in distress were observed during the study. Overall, results suggest that the psychological treatment for parents of children after end of treatment for childhood cancer used in the current study is promising and should be tested and evaluated in future studies.
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| 3. |
- Norlund, Fredrika, et al.
(författare)
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Internet-based Cognitive Behavior Therapy for Symptoms of Depression and Anxiety among Patients with a Recent Myocardial Infarction : The U-CARE Heart Randomized Trial
- 2018
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 20:3
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Tidskriftsartikel (refereegranskat)abstract
- Background: Symptoms of depression and anxiety are common after a myocardial infarction (MI). Internet-based cognitivebehavioral therapy (iCBT) has shown good results in other patient groups.Objective: The aim of this study was to evaluate the effectiveness of an iCBT treatment to reduce self-reported symptoms ofdepression and anxiety among patients with a recent MI.Methods: In total, 3928 patients were screened for eligibility in 25 Swedish hospitals. Of these, 239 patients (33.5%, 80/239women, mean age 60 years) with a recent MI and symptoms of depression or anxiety were randomly allocated to a therapist-guided,14-week iCBT treatment (n=117), or treatment as usual (TAU; n=122). The iCBT treatment was designed for post-MI patients.The primary outcome was the total score of the Hospital Anxiety and Depression Scale (HADS) 14 weeks post baseline, assessedover the internet. Treatment effect was evaluated according to the intention-to-treat principle, with multiple imputations. For themain analysis, a pooled treatment effect was estimated, controlling for age, sex, and baseline HADS.Results: There was a reduction in HADS scores over time in the total study sample (mean delta=−5.1, P<.001) but no differencebetween the study groups at follow-up (beta=−0.47, 95% CI −1.95 to 1.00, P=.53). Treatment adherence was low. A total of46.2% (54/117) of the iCBT group did not complete the introductory module.Conclusions: iCBT treatment for an MI population did not result in lower levels of symptoms of depression or anxiety comparedwith TAU. Low treatment adherence might have influenced the result.Trial Registration: ClinicalTrials.gov NCT01504191; https://clinicaltrials.gov/ct2/show/NCT01504191 (Archived at Webciteat http://www.webcitation.org/6xWWSEQ22)
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| 4. |
- Wallert, John, et al.
(författare)
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Predicting Adherence to Internet-Delivered Psychotherapy for Symptoms of Depression and Anxiety After Myocardial Infarction : Machine Learning Insights From the U-CARE Heart Randomized Controlled Trial
- 2018
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Ingår i: Journal of Medical Internet Research. - : Air University Press. - 1438-8871. ; 20:10
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Tidskriftsartikel (refereegranskat)abstract
- Background: Low adherence to recommended treatments is a multifactorial problem for patients in rehabilitation after myocardial infarction (MI). In a nationwide trial of internet-delivered cognitive behavior therapy (iCBT) for the high-risk subgroup of patients with MI also reporting symptoms of anxiety, depression, or both (MI-ANXDEP), adherence was low. Since low adherence to psychotherapy leads to a waste of therapeutic resources and risky treatment abortion in MI-ANXDEP patients, identifying early predictors for adherence is potentially valuable for effective targeted care.Objectives: The goal of the research was to use supervised machine learning to investigate both established and novel predictors for iCBT adherence in MI-ANXDEP patients.Methods: Data were from 90 MI-ANXDEP patients recruited from 25 hospitals in Sweden and randomized to treatment in the iCBT trial Uppsala University Psychosocial Care Programme (U-CARE) Heart study. Time point of prediction was at completion of the first homework assignment. Adherence was defined as having completed more than 2 homework assignments within the 14-week treatment period. A supervised machine learning procedure was applied to identify the most potent predictors for adherence available at the first treatment session from a range of demographic, clinical, psychometric, and linguistic predictors. The internal binary classifier was a random forest model within a 3×10–fold cross-validated recursive feature elimination (RFE) resampling which selected the final predictor subset that best differentiated adherers versus nonadherers.Results: Patient mean age was 58.4 years (SD 9.4), 62% (56/90) were men, and 48% (43/90) were adherent. Out of the 34 potential predictors for adherence, RFE selected an optimal subset of 56% (19/34; Accuracy 0.64, 95% CI 0.61-0.68, P<.001). The strongest predictors for adherence were, in order of importance, (1) self-assessed cardiac-related fear, (2) sex, and (3) the number of words the patient used to answer the first homework assignment.Conclusions: For developing and testing effective iCBT interventions, investigating factors that predict adherence is important. Adherence to iCBT for MI-ANXDEP patients in the U-CARE Heart trial was best predicted by cardiac-related fear and sex, consistent with previous research, but also by novel linguistic predictors from written patient behavior which conceivably indicate verbal ability or therapeutic alliance. Future research should investigate potential causal mechanisms and seek to determine what underlying constructs the linguistic predictors tap into. Whether these findings replicate for other interventions outside of Sweden, in larger samples, and for patients with other conditions who are offered iCBT should also be investigated.
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| 5. |
- Wikman, Anna, et al.
(författare)
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Development of an Internet-Administered Cognitive Behavior Therapy Program (ENGAGE) for Parents of Children Previously Treated for Cancer : Participatory Action Research Approach
- 2018
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 20:4
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Tidskriftsartikel (refereegranskat)abstract
- Background: Parenting a child through cancer is a distressing experience, and a subgroup of parents report negative long-term psychological consequences years after treatment completion. However, there is a lack of evidence-based psychological interventions for parents who experience distress in relation to a child’s cancer disease after end of treatment.Objective: One aim of this study was to develop an internet-administered, cognitive behavior therapy–based, psychological, guided, self-help intervention (ENGAGE) for parents of children previously treated for cancer. Another aim was to identify acceptable procedures for future feasibility and efficacy studies testing and evaluating the intervention.Methods: Participatory action research methodology was used. The study included face-to-face workshops and related Web-based exercises. A total of 6 parents (4 mothers, 2 fathers) of children previously treated for cancer were involved as parent research partners. Moreover, 2 clinical psychologists were involved as expert research partners. Research partners and research group members worked collaboratively throughout the study. Data were analyzed iteratively using written summaries of the workshops and Web-based exercises parallel to data collection.Results: A 10-week, internet-administered, cognitive behavior therapy–based, psychological, guided, self-help intervention (ENGAGE) was developed in collaboration with parent research partners and expert research partners. The content of the intervention, mode and frequency of e-therapist support, and the individualized approach for feedback were modified based on the research partner input. Shared solutions were reached regarding the type and timing of support from an e-therapist (eg, initial video or telephone call, multiple methods of e-therapist contact), duration and timing of intervention (eg, 10 weeks, 30-min assessments), and the removal of unnecessary support functions (eg, removal of chat and forum functions). Preferences for study procedures in future studies testing and evaluating the intervention were discussed; consensus was not reached for all aspects.Conclusions: To the best of our knowledge, this study is the first use of a participatory action research approach to develop a psychological intervention for parents of children previously treated for cancer and to identify acceptable study procedures. Involvement of parents with lived experience was vital in the development of a potentially relevant and acceptable intervention for this population.
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| 6. |
- Wikman, Anna, et al.
(författare)
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Prevalence and predictors of symptoms of anxiety and depression, and comorbid symptoms of distress in parents of childhood cancer survivors and bereaved parents five years after end of treatment or a child's death
- 2018
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Ingår i: Acta Oncologica. - 0284-186X .- 1651-226X. ; 57:7, s. 950-957
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND:Symptoms of anxiety and depression and their comorbidity in parents of children diagnosed with cancer, particularly later in the cancer trajectory, need further study. The aim was to investigate the prevalence and predictors of symptoms of anxiety and depression in parents of childhood cancer survivors and bereaved parents, five years after end of treatment or a child's death and to investigate comorbidity between symptoms of anxiety, depression and posttraumatic stress.MATERIAL AND METHODS:Participants were 132 parents (68 mothers, 64 fathers) of survivors and 37 bereaved parents (20 mothers, 17 fathers). Chi-square test and t-test were used to explore differences in symptoms of anxiety and depression. Comorbidity was explored using Pearson's correlations and Chi-square test. Multivariable hierarchical linear regressions were used to identify predictors of symptoms of anxiety and depression.RESULTS:In parents of survivors, 20% reported anxiety and 14% reported depression. Corresponding figures among bereaved parents were 30% and 35%. Among parents of survivors reporting clinically relevant anxiety and depression, a larger proportion were mothers than fathers. No such difference was found among bereaved parents. Symptoms of anxiety, depression and posttraumatic stress were highly correlated (all r ≥ 0.65, p < .001). Comorbid symptoms were reported by 7-11% of parents of survivors and 14-24% of bereaved parents. In multivariable analyses, more severe symptoms of depression were associated with anxiety, posttraumatic stress and distress related to previous stressful life events. Being a mother, symptoms of depression and posttraumatic stress were associated with more severe symptoms of anxiety.CONCLUSION:A subset of parents report clinically elevated symptoms of anxiety and depression, comorbid anxiety, depression and posttraumatic stress. Experiencing distress related to previous stressful life events as well as concurrent comorbidity were associated with more severe psychological distress at five years after end of treatment/a child's death. These results deserve further attention in research and clinical care.
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| 7. |
- Woodford, Joanne, et al.
(författare)
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Attitudes and Preferences Toward a Hypothetical Trial of an Internet-Administered Psychological Intervention for Parents of Children Treated for Cancer : Web-Based Survey
- 2018
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 5:4
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Tidskriftsartikel (refereegranskat)abstract
- Background:Clinical trials are often challenged with issues of recruitment and retention. Little is known concerning general attitudes and preferences toward trial design and willingness to participate among parents of children treated for cancer. Furthermore, willingness to participate in internet-administered psychological interventions remains unexplored. In this study, we examined attitudes and preferences of the population regarding study procedures for a hypothetical trial of an internet-administered psychological intervention. In addition, differences in the response rate between modes of study invitation and willingness to engage in internet-administered interventions were examined.Objective:The primary objective of this study was to examine attitudes and preferences toward participating in an internet-administrated psychological intervention. The secondary objective was to examine the response rates and help-seeking behavior among parents of children treated for cancer.Methods:A cross-sectional, Web-based survey was conducted with parents of children who had completed cancer treatment. This Web-based survey examined self-reported emotional distress, prior help-seeking and receipt of psychological support, past research participation, attitudes toward research, preferences concerning recruitment procedures, and attitudes toward different types of trial design.Results:Of all the parents invited, 32.0% (112/350) completed the survey, with no difference in response rate between modes of study invitation (χ21=0.6, P=.45). The majority (80/112, 71.4%) of parents responded that they had experienced past emotional distress. Responses indicated high (56/112, 50.0%) or somewhat high trust in research (51/112, 45.5%), and the majority of parents would accept, or maybe accept, internet-administered psychological support if offered (83/112, 74.1%). In addition, responses showed a preference for postal study invitation letters (86/112, 76.8%), sent by a researcher (84/112, 75.0%) with additional study information provided on the Web via text (81/112, 72.3%) and video (66/112, 58.9%). Overall, parents responded that trials utilizing a waiting list control, active alternative treatment control, or a patient-preference design were acceptable.Conclusions:Parents of children treated for cancer appear willing to participate in trials examining internet-administered psychological support. Findings of this study will inform the design of a feasibility trial examining internet-administered psychological support for the population.
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| 8. |
- Woodford, Joanne, et al.
(författare)
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Study protocol for a feasibility study of an internet-administered, guided, CBT-based, self-help intervention (ENGAGE) for parents of children previously treated for cancer
- 2018
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Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 8:6
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: A subgroup of parents of children previously treated for cancer report long-term psychological distress after end of treatment. However, needs for psychological support are commonly unmet and there is a lack of evidence-based treatments tailored to the specific needs of this population. An internet-administered, guided, cognitive-behavioural therapy-based, self-help intervention (ENGAGE) for parents of children previously treated for cancer may provide a solution. The aim is to examine the feasibility and acceptability of the intervention ENGAGE and the study procedures for a future controlled trial.METHODS AND ANALYSIS: The study has an uncontrolled within-group design with an embedded qualitative and quantitative process evaluation. Potential participants are parents of children previously treated for cancer, living in Sweden, recruited via their child's personal identification number (via the Swedish Childhood Cancer Registry and the Swedish Tax Agency). Parents are invited randomly with information packs sent to home addresses. Further interest in participating can be registered via information on relevant websites. The study aims to recruit 50 parents who will receive the intervention ENGAGE which is designed to be delivered over a 10-week period, and comprises one introductory chapter followed by up to 10 intervention modules addressing key concerns identified for the population. Consistent with feasibility study objectives, primary outcomes relate to recruitment, attrition, data collection, study resources, intervention delivery and acceptability. Clinical outcomes (post-traumatic stress, depression, anxiety, fear of cancer recurrence, psychological inflexibility and experiential avoidance, depressed inactivity, fatigue, quality of life and self-compassion) will be measured at baseline, post-treatment (12 weeks) and 6-month follow-up.ETHICS AND DISSEMINATION: The Regional Ethical Review Board in Uppsala, Sweden has granted approval for the study (Dnr: 2017/527). Results will be disseminated to relevant healthcare and patient communities, in peer-reviewed and popular science journals, and at scientific and clinical conferences.TRIAL REGISTRATION NUMBER: ISRCTN57233429; Pre-results.
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