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Woodford, J., Wikman, A., Einhorn, K., Cernvall, M., Grönqvist, H., Romppala, A. & von Essen, L. (2018). Attitudes and Preferences Toward a Hypothetical Trial of an Internet-Administered Psychological Intervention for Parents of Children Treated for Cancer: Web-Based Survey. Journal of Medical Internet Research, 5(4), Article ID e10085.
Open this publication in new window or tab >>Attitudes and Preferences Toward a Hypothetical Trial of an Internet-Administered Psychological Intervention for Parents of Children Treated for Cancer: Web-Based Survey
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2018 (English)In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 5, no 4, article id e10085Article in journal (Refereed) Published
Abstract [en]

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.

Keywords
Cancer, Parents, eHealth, Clinical Trial, Depression, Anxiety
National Category
Health Sciences Clinical Medicine Psychology
Research subject
Psychology; Health Care Research
Identifiers
urn:nbn:se:uu:diva-357971 (URN)10.2196/10085 (DOI)000453827700001 ()
Funder
Swedish Research Council, K2015-99X-20836-08-4Swedish Cancer Society, 140790
Available from: 2018-11-29 Created: 2018-11-29 Last updated: 2019-09-10Bibliographically approved
Wikman, A., Kukkola, L., Börjesson, H., Cernvall, M., Woodford, J., Grönqvist, H. & von Essen, L. (2018). Development of an Internet-Administered Cognitive Behavior Therapy Program (ENGAGE) for Parents of Children Previously Treated for Cancer: Participatory Action Research Approach. Journal of Medical Internet Research, 20(4), Article ID e133.
Open this publication in new window or tab >>Development of an Internet-Administered Cognitive Behavior Therapy Program (ENGAGE) for Parents of Children Previously Treated for Cancer: Participatory Action Research Approach
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2018 (English)In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 20, no 4, article id e133Article in journal (Refereed) Published
Abstract [en]

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.

Keywords
cognitive therapy; psychology, clinical; e-therapy; community participation; Sweden
National Category
Psychology Cancer and Oncology
Identifiers
urn:nbn:se:uu:diva-349408 (URN)10.2196/jmir.9457 (DOI)000430392800001 ()29669710 (PubMedID)
Funder
Swedish Research Council, K2015-99X-20836-08-4Swedish Cancer Society, 140790
Available from: 2018-04-26 Created: 2018-04-26 Last updated: 2018-06-19Bibliographically approved
Wiman, H., Ander, M., Woodford, J., Hasselblad, T., Grönqvist, H., Ljungman, G., . . . von Essen, L. (2018). Guided Internet-Administered Self-Help to Reduce Symptoms of Anxiety and Depression Among Adolescents and Young Adults Diagnosed with Cancer During Adolescence: Lessons Learned. Paper presented at 50th congress of the International Society of Paediatric Oncology (SIOP), November 16-19, 2018, Kyoto, Japan.. Pediatric Blood & Cancer, 65(suppl.2), S597-S597
Open this publication in new window or tab >>Guided Internet-Administered Self-Help to Reduce Symptoms of Anxiety and Depression Among Adolescents and Young Adults Diagnosed with Cancer During Adolescence: Lessons Learned
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2018 (English)In: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 65, no suppl.2, p. S597-S597Article in journal, Meeting abstract (Other academic) Published
Place, publisher, year, edition, pages
WILEY, 2018
National Category
Cancer and Oncology Hematology Pediatrics
Identifiers
urn:nbn:se:uu:diva-365107 (URN)000445195005115 ()
Conference
50th congress of the International Society of Paediatric Oncology (SIOP), November 16-19, 2018, Kyoto, Japan.
Available from: 2018-11-16 Created: 2018-11-16 Last updated: 2018-11-16Bibliographically approved
Woodford, J., Wikman, A., Cernvall, M., Ljungman, G., Romppala, A., Grönqvist, H. & von Essen, L. (2018). 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. BMJ Open, 8(6), Article ID e023708.
Open this publication in new window or tab >>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
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2018 (English)In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 8, no 6, article id e023708Article in journal (Refereed) Published
Abstract [en]

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.

Keywords
anxiety, clinical trial, depression, eHealth, parents
National Category
Psychology Cancer and Oncology
Identifiers
urn:nbn:se:uu:diva-355488 (URN)10.1136/bmjopen-2018-023708 (DOI)000435567900114 ()29903802 (PubMedID)
Funder
Swedish Research Council, K2015-99X-20836-08-4Swedish Cancer Society, 170709Swedish Childhood Cancer Foundation, PR2017-0005
Available from: 2018-06-29 Created: 2018-06-29 Last updated: 2018-09-20Bibliographically approved
Grönqvist, H., Olsson, E., Johansson, B., Held, C., Sjöström, J., Lindahl Norberg, A., . . . von Essen, L. (2017). Fifteen Challenges in Establishing a Multidisciplinary Research Program on eHealth Research in a University Setting: A Case Study. Journal of Medical Internet Research, 19(5), Article ID e173.
Open this publication in new window or tab >>Fifteen Challenges in Establishing a Multidisciplinary Research Program on eHealth Research in a University Setting: A Case Study
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2017 (English)In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 19, no 5, article id e173Article in journal (Refereed) Published
Abstract [en]

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.

Keywords
eHealth, interdisciplinary studies, organization, administration
National Category
Psychology Information Systems, Social aspects
Identifiers
urn:nbn:se:uu:diva-323577 (URN)10.2196/jmir.7310 (DOI)000417014900001 ()28536090 (PubMedID)
Note

De 2 första författarna delar förstaförfattarskapet.

Available from: 2017-06-08 Created: 2017-06-08 Last updated: 2018-03-07Bibliographically approved
Ander, M., Wikman, A., Ljótsson, B., Grönqvist, H., Ljungman, G., Woodford, J., . . . von Essen, L. (2017). 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. BMJ Open, 7(1), Article ID e013906.
Open this publication in new window or tab >>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
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2017 (English)In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 7, no 1, article id e013906Article in journal (Refereed) Published
Abstract [en]

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.

Keywords
adolescence, cognitive behavioural therapy, feasibility study, neoplasms, psychological treatment
National Category
Psychology Cancer and Oncology
Identifiers
urn:nbn:se:uu:diva-313898 (URN)10.1136/bmjopen-2016-013906 (DOI)000395590300138 ()
Funder
Swedish Childhood Cancer Foundation, PR2013-0039
Available from: 2017-01-25 Created: 2017-01-25 Last updated: 2017-12-19Bibliographically approved
Hovén, E., Grönqvist, H., Pöder, U., von Essen, L. & Lindahl Norberg, A. (2017). Impact of a child’s cancer disease on parents’ everyday life: A longitudinal study from Sweden. Acta Oncologica, 56(1), 93-100
Open this publication in new window or tab >>Impact of a child’s cancer disease on parents’ everyday life: A longitudinal study from Sweden
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2017 (English)In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 56, no 1, p. 93-100Article in journal (Refereed) Published
Abstract [en]

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.

National Category
Cancer and Oncology Public Health, Global Health, Social Medicine and Epidemiology Psychology
Identifiers
urn:nbn:se:uu:diva-306725 (URN)10.1080/0284186X.2016.1250945 (DOI)000392819600015 ()27834555 (PubMedID)
Funder
Swedish Childhood Cancer Foundation, PROJ08/010Swedish Research Council, K2008-70X-20836-01-3 K2011-70X-20836-04-4 K2015-99X-20836-08-4Swedish Cancer Society, 2007/1015 2010/726
Available from: 2016-11-03 Created: 2016-11-03 Last updated: 2018-02-28Bibliographically approved
Kukkola, L., Hovén, E., Cernvall, M., von Essen, L. & Grönqvist, H. (2017). Perceptions of support among Swedish parents of children after end of successful cancer treatment: A prospective, longitudinal study. Acta Oncologica, 56(12), 1705-1711
Open this publication in new window or tab >>Perceptions of support among Swedish parents of children after end of successful cancer treatment: A prospective, longitudinal study
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2017 (English)In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 56, no 12, p. 1705-1711Article in journal (Refereed) Published
Abstract [en]

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.

National Category
Cancer and Oncology Psychology
Identifiers
urn:nbn:se:uu:diva-330769 (URN)10.1080/0284186X.2017.1374554 (DOI)000418118800006 ()28971717 (PubMedID)
Funder
Swedish Research Council, K2008-70X-20836-01-3; K2011-70X-20836-04-4; K2015-99X-20836-08-4Swedish Cancer Society, 2007/1015; 2010/726; 2014/613Swedish Childhood Cancer Foundation, PROJ08/010U‐Care: Better Psychosocial Care at Lower Cost? Evidence-based assessment and Psychosocial Care via Internet, a Swedish Example, 2009-1093
Available from: 2017-10-03 Created: 2017-10-03 Last updated: 2018-01-22Bibliographically approved
Kukkola, L., Ljungman, L., Börjesson, H., Cernvall, M., Grönqvist, H., Wikman, A. & von Essen, L. (2016). Development of an online, guided, psychological self-help program for parents of children previously treated for cancer, together with end-users according to Participatory Action Research. In: : . Paper presented at 18th International Psycho Oncology Society Congress (pp. 64-64). , 25(SP. S3)
Open this publication in new window or tab >>Development of an online, guided, psychological self-help program for parents of children previously treated for cancer, together with end-users according to Participatory Action Research
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2016 (English)Conference paper, Poster (with or without abstract) (Refereed)
National Category
Cancer and Oncology Psychology
Identifiers
urn:nbn:se:uu:diva-309575 (URN)000385942700142 ()
Conference
18th International Psycho Oncology Society Congress
Note

Meeting Abstract: 194

Available from: 2017-01-09 Created: 2016-12-05 Last updated: 2017-03-23Bibliographically approved
Ander, M., Grönqvist, H., Cernvall, M., Engvall, G., Hedström, M., Ljungman, G., . . . von Essen, L. (2016). Development of health-related quality of life and symptoms of anxiety and depression among persons diagnosed with cancer during adolescence: a 10-year follow-up study. Psycho-Oncology, 25(5), 582-589
Open this publication in new window or tab >>Development of health-related quality of life and symptoms of anxiety and depression among persons diagnosed with cancer during adolescence: a 10-year follow-up study
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2016 (English)In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 25, no 5, p. 582-589Article in journal (Refereed) Published
Abstract [en]

Objective: The main aim was to investigate the development of health-related quality of life (HRQOL) and symptoms of anxiety and depression in a cohort diagnosed with cancer during adolescence from shortly after up to 10 years after diagnosis.

Methods: Participants (n = 61) completed the SF-36 and the HADS shortly; six, 12, and 18 months; and two, three, four, and 10 years (n = 28) after diagnosis. Polynomial change trajectories were used to model development.

Results: Polynomial change trajectories showed an initial increase which abated over time into a decrease which abated over time for the SF-36 subscales Mental Health and Vitality; an initial decline which abated over time into an increase for HADS anxiety; and an initial decline which abated over time into an increase which abated over time for HADS depression. The SF-36 mental component summary showed no change from two to 10 years after diagnosis whereas the SF-36 physical component summary showed an increase from two years after diagnosis which declined over time. Ten years after diagnosis 29% reported possible anxiety.

Conclusions: Development of HRQOL and symptoms of anxiety and depression appears to be nonlinear among persons diagnosed with cancer during adolescence. Well into permanent survivorship an increase in symptoms of anxiety is shown and approximately a third of the participants report possible anxiety. The findings indicate the need for: studies designed to pinpoint the times of highest psychological risk, clinical follow-up focusing on psychological problems, and development of effective psychological interventions for survivors of adolescent cancer

National Category
Cancer and Oncology Psychology (excluding Applied Psychology)
Identifiers
urn:nbn:se:uu:diva-262514 (URN)10.1002/pon.3965 (DOI)000374494700014 ()26361085 (PubMedID)
External cooperation:
Funder
Swedish Cancer Society, 99 0347 01 0235 02 0690 03 0227 05 0189 10 0649 11 0649 12 0649Swedish Childhood Cancer Foundation, 1999/021 02/002 04/011 07/044 10/086
Available from: 2015-09-16 Created: 2015-09-16 Last updated: 2017-12-04Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0003-1932-4438

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