| 1. |
- Ander, Malin, et al.
(författare)
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Guided Internet-Administered Self-Help to Reduce Symptoms Of Anxiety and Depression Among Adolescents and Young Adults Diagnosed With Cancer During Adolescence (U-CARE: YoungCan) : study protocol for a feasibility trial
- 2017
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Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 7:1
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Tidskriftsartikel (refereegranskat)abstract
- Introduction A subgroup of adolescents and young adults diagnosed with cancer during adolescence reports elevated levels of anxiety and depressive symptoms and unmet needs for psychological support. Evidence-based psychological treatments tailored for this population are lacking. This protocol describes a feasibility study of a guided-internet-administered self-help programme (YoungCan) primarily targeting symptoms of anxiety and depression among young persons diagnosed with cancer during adolescence and of the planned study procedures for a future controlled trial. Methods/analysis The study is an uncontrolled feasibility trial with a pre-post and 3-month follow-up design. Potential participants aged 15-25years, diagnosed with cancer during adolescence, will be identified via the Swedish Childhood Cancer Registry. 30 participants will be included. Participants will receive YoungCan, a 12-week therapist-guided, internet-administered self-help programme consisting primarily of cognitive-behavioural therapy organised into individually assigned modules targeting depressive symptoms, worry and anxiety, body dissatisfaction and post-traumatic stress. Interactive peer support and psychoeducative functions are also available. Feasibility outcomes include: recruitment and eligibility criteria; data collection; attrition; resources needed to complete the study and programme; safety procedures; participants' and therapists' adherence to the programme; and participants' acceptability of the programme and study methodology. Additionally, mechanisms of impact will be explored and data regarding symptoms of anxiety, depression, post-traumatic stress, body dissatisfaction, reactions to social interactions, quality of life, axis I diagnoses according to the Mini International Neuropsychiatric Interview and healthcare service use will be collected. Exploratory analyses of changes in targeted outcomes will be conducted. Ethics/dissemination This feasibility protocol was approved by the Regional Ethical Review Board in Uppsala, Sweden (ref: 2016/210). Findings will be disseminated to relevant research, clinical, health service and patient communities through publications in peer-reviewed and popular science journals and presentations at scientific and clinical conferences.
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| 3. |
- Cernvall, Martin, 1980-, et al.
(författare)
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Twelve-Month Follow-Up of a Randomized Controlled Trial of Internet-Based Guided Self-Help for Parents of Children on Cancer Treatment
- 2017
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 19:7
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Tidskriftsartikel (refereegranskat)abstract
- Background: A 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.Objective: The aim of this study was to evaluate the long-term efficacy of Internet-based guided self-help for parents of children on cancer treatment.Methods: This 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.Results: A 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.Conclusions: Using 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.
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| 4. |
- Grönqvist, Helena, 1975-, et al.
(författare)
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Fifteen Challenges in Establishing a Multidisciplinary Research Program on eHealth Research in a University Setting : A Case Study
- 2017
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 19:5
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND:U-CARE is a multidisciplinary eHealth research program that involves the disciplines of caring science, clinical psychology, health economics, information systems, and medical science. It was set up from scratch in a university setting in 2010, funded by a governmental initiative. While establishing the research program, many challenges were faced. Systematic documentation of experiences from establishing new research environments is scarce.OBJECTIVE:The aim of this paper was to describe the challenges of establishing a publicly funded multidisciplinary eHealth research environment.METHODS:Researchers involved in developing the research program U-CARE identified challenges in the formal documentation and by reflecting on their experience of developing the program. The authors discussed the content and organization of challenges into themes until consensus was reached.RESULTS:The authors identified 15 major challenges, some general to establishing a new research environment and some specific for multidisciplinary eHealth programs. The challenges were organized into 6 themes: Organization, Communication, Implementation, Legislation, Software development, and Multidisciplinarity.CONCLUSIONS:Several challenges were faced during the development of the program and several accomplishments were made. By sharing our experience, we hope to help other research groups embarking on a similar journey to be prepared for some of the challenges they are likely to face on their way.
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| 5. |
- Hovén, Emma, et al.
(författare)
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Impact of a child’s cancer disease on parents’ everyday life : A longitudinal study from Sweden
- 2017
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Ingår i: Acta Oncologica. - 0284-186X .- 1651-226X. ; 56:1, s. 93-100
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Tidskriftsartikel (refereegranskat)abstract
- Background: A child's cancer disease may disrupt the daily life of the affected family for a long period. The aim was to describe restrictions on parents' leisure activities and work/studies during and after the child's treatment. Methods: This study used data from a cohort of mothers and fathers (n = 246) of children diagnosed with cancer. Data was collected five times from two months after diagnosis to one year after end of treatment. Reports of restrictions were evaluated over time, between mothers and fathers, and in relation to parent-reported child symptom burden (The Memorial Symptom Assessment Scale) and partial post-traumatic stress disorder (PTSD) (The PTSD Checklist-Civilian Version). Results: Two (51%) and four (45%) months after diagnosis, about half reported that their leisure activities were restricted at least some of the time. Corresponding percentages for restrictions on work/ studies were 84% and 77%. One year after end of treatment, the great majority reported that their leisure activities (91%) and/or work/studies (76%) were never/seldom restricted. During treatment, more mothers than fathers reported restrictions on work/studies all/most of the time. After end of treatment, gender was only related to reports of restrictions among parents not reporting partial PTSD. More parents who reported being restricted all/most of the time also reported partial PTSD and/or a greater symptom burden for the child. Conclusion: Parents report frequent restrictions on everyday life during treatment. One year after end of treatment, parents report only a limited impact of the child's cancer on their leisure activities and work/studies. More parents who report restrictions also report partial PTSD and/or a greater child symptom burden. The effect of gender on restrictions varies depending on reports of partial PTSD. Future studies of gender differences regarding the impact of a child's cancer on parents' everyday life should thus consider mothers' and fathers' level of psychological distress.
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| 6. |
- Kukkola, Laura, et al.
(författare)
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Perceptions of support among Swedish parents of children after end of successful cancer treatment : A prospective, longitudinal study
- 2017
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Ingår i: Acta Oncologica. - 0284-186X .- 1651-226X. ; 56:12, s. 1705-1711
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Most children survive childhood cancer, however parenting a child diagnosed with cancer is a major challenge. The main aim of the current study was to describe Swedish parents’ need, opportunity and benefit of support from healthcare professionals and significant others after end of a child’s successful cancer treatment.Material and methods: Data was collected from approximately one week after end of successful treatment/six months after transplantation (T4, n ¼ 212) up to five years thereafter (T7, n ¼ 137). Parents answered questions via telephone about need, opportunity and benefit of talking to psychologists, social workers, partners and friends.Results: The proportion reporting need of support from healthcare professionals varied between 73% (mothers’ need of support from social workers, T4) and 7% (fathers’ need of support from psychologists/social workers, T7). Need of support from significant others varied between 99% (mothers’ and fathers’ need of support from partners, T4) and 27% (fathers’ need of support from friends, T7). The proportion reporting need of support decreased over time (p < .001), no decrease occurred from three months after end of treatment/nine months after transplantation (T5) to one year after end of treatment/18 months after transplantation (T6). More mothers than fathers reported need of support from friends at T5 (p < .001) and T7 (p < .05) and from psychologists at T7 (p < .05). Opportunities for support from healthcare professionals varied, most reported opportunity for support from significant others. Almost all reported benefit from received support.Conclusion: A declining number reports a need of support over time, however subgroups report an unmet need and almost every parent perceive support from healthcare professionals as beneficial. More parents should get access to psychosocial support services after end of a child’s cancer treatment/transplantation.
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| 7. |
- 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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| 8. |
- Wikman, Anna, et al.
(författare)
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The interdependence of posttraumatic stress symptoms in parental dyads during and after their child’s treatment for cancer
- 2017
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Ingår i: Acta Oncologica. - 0284-186X .- 1651-226X. ; 56:12, s. 1698-1704
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Tidskriftsartikel (refereegranskat)abstract
- Background: Cancer in a child is highly distressing and some parents are at increased risk for developing posttraumatic stress symptoms (PTSS). However, the interdependence of PTSS in parental dyads has rarely been accounted for. The aim was to explore the dyadic relationship of PTSS in parents of children diagnosed with cancer.Material and methods: The sample includes 150 parents (75 dyads) of 75 children diagnosed with cancer in Sweden during 2002–2004, with follow-up until one year after end of treatment. Data on PTSS from six assessments were included. The first three assessments were carried out during treatment and the remaining after end of treatment. Actor-partner interdependence models were estimated using a structural equation modeling approach to explore the dyadic relationship of PTSS. Actor effects refer to intra-individual dependency over time, and partner effects refer to inter-individual dependency over time, i.e., how much an individual’s symptom levels are affected by their partner’s symptom levels at the previous assessment.Results: Results show both actor and partner effects during the child’s treatment. Only an actor effect remained following end of treatment where level of PTSS at one assessment was associated with the level of PTSS at the subsequent assessment. The association between mothers’ and fathers’ PTSS did not remain after end of treatment.Conclusions: Parents appear to react as an interdependent emotional system during the child’s treatment but this effect disappears after end of treatment. Results suggest psychological interventions for parents during the child’s cancer treatment should also be sensitive to and address the influence that distress in one partner may have on the other.
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