Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Cancer during adolescence: Psychological consequences and development of psychological treatment
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
2017 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aim of the present thesis was to examine long-term psychological distress following cancer during adolescence and to develop a tailored psychological intervention to reduce cancer-related distress experienced by young survivors of adolescent cancer that was feasible and acceptable.

Study I adopted a longitudinal design, assessing health-related quality of life (HRQOL) and symptoms of anxiety and depression among adolescents diagnosed with cancer from shortly after diagnosis (n=61) up to 10 years after diagnosis (n=28). Findings suggest that development of HRQOL and anxiety and depression is not linear and whilst the majority adjust well, a subgroup report long-term elevated distress. In Study II, experiences of cancer-related psychological distress were explored using unstructured interviews. Participants described cancer treatment as a mental challenge, felt marked and hindered by the cancer experience, and struggled with feelings of inadequacy and insecurity, existential issues, and difficulties handling emotions. Study III was a preliminary investigation of individualised cognitive behavioural therapy (CBT), alongside the identification and conceptualisation of cancer-related concerns using cognitive-behavioural theory. Significant difficulties with recruitment were encountered. Participants reported cancer-related concerns conceptualised as social avoidance, fear and avoidance of emotions and bodily symptoms, imbalance in activity, and worry and rumination. In Study IV, the acceptability and feasibility of an internet-administered CBT based self-help intervention (ICBT) for young persons diagnosed with cancer during adolescence was examined using an uncontrolled design and embedded process evaluation. The study protocol for Study IV was included in this thesis along with preliminary findings demonstrating significant difficulties with recruitment.

Overall, findings suggest that whilst the majority of survivors of adolescent cancer adjust well over time a subgroup report elevated levels of distress and a range of distressing cancer-related experiences. A number of cancer-related difficulties were identified in Study II and III, which may be used to inform the development of future psychological treatments for the population. Preliminary investigation of the psychological interventions examined within this thesis further highlights the need for future development work to enhance the feasibility and acceptability of psychological support for the population. 

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2017. , p. 75
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 1393
Keywords [en]
cancer and oncology, adolescents, young adults, survivorship, anxiety, depression, psychological distress, health-related quality of life, cognitive behaviour therapy, guided self-help
National Category
Psychology
Research subject
Medical Science; Psychology
Identifiers
URN: urn:nbn:se:uu:diva-330130ISBN: 978-91-513-0145-7 (print)OAI: oai:DiVA.org:uu-330130DiVA, id: diva2:1153609
Public defence
2017-12-15, Auditorium minus, Museum Gustavianum, Akademigatan 3, Uppsala, 13:15 (Swedish)
Opponent
Supervisors
Funder
U‐Care: Better Psychosocial Care at Lower Cost? Evidence-based assessment and Psychosocial Care via Internet, a Swedish ExampleSwedish Childhood Cancer Foundation, 10/086, 12/028, 2013-0039, 2016-0004Swedish Cancer Society, 12 0649, 13 0457Available from: 2017-11-23 Created: 2017-10-31 Last updated: 2018-03-07
List of papers
1. 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
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
Show others...
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
2. Exploration of psychological distress experienced by survivors of adolescent cancer reporting a need for psychological support
Open this publication in new window or tab >>Exploration of psychological distress experienced by survivors of adolescent cancer reporting a need for psychological support
2018 (English)In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 13, no 4, p. e0195899-Article in journal (Refereed) Published
Abstract [en]

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.

Methods

Two 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.

Results

The 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.

Keywords
adolescence, cancer, psychological distress, psychological treatment, survivorship, qualitative methods
National Category
Medical and Health Sciences Psychology
Research subject
Medical Science; Psychology
Identifiers
urn:nbn:se:uu:diva-330127 (URN)10.1371/journal.pone.0195899 (DOI)29664926 (PubMedID)
Funder
U‐Care: Better Psychosocial Care at Lower Cost? Evidence-based assessment and Psychosocial Care via Internet, a Swedish ExampleSwedish Childhood Cancer Foundation, 2013-0039; 2016-0004
Available from: 2017-10-31 Created: 2017-10-31 Last updated: 2018-04-26
3. A preliminary open trial of individualised cognitive behavioural therapy for young survivors of cancer during adolescence: initial findings and conceptualisation of distress
Open this publication in new window or tab >>A preliminary open trial of individualised cognitive behavioural therapy for young survivors of cancer during adolescence: initial findings and conceptualisation of distress
Show others...
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Objective: A subgroup of adolescent and young adult (AYA) survivors of cancer in adolescence report high levels of psychological distress. Empirically-supported treatments tailored to the concerns experienced by this population are lacking. The aims of this study were to (1) conduct a preliminary evaluation of an individualised cognitive behavioural therapy (CBT) intervention for adolescent and young adult (AYA) survivors of cancer during adolescence and (2) identify and conceptualise cancer-related psychological concerns using cognitive-behavioural theory.

Methods: A single-arm trial in which ten AYA (17-25 years) survivors of cancer during adolescence were offered up to 15 sessions of individualised CBT guided by behavioural case formulations was undertaken. Clinical outcomes were assessed at baseline, post-treatment, and three months follow-up. Before commencing treatment, two individual qualitative interviews were conducted with each participant. Analysis of cancer-related concerns was guided by qualitative framework analysis and theoretical thematic analysis, and cognitive-behavioural theory was used to inform identification of themes.

Results: Ten of 201 potential participants invited to participate were included resulting in an overall participation rate of 5%. Nine participants completed treatment and eight completed the follow-up assessment. The majority of concerns reported were cancer-related and conceptualised as social avoidance, fear and avoidance of emotions and bodily symptoms, low mood and unbalance in activity, and worry and rumination.

Conclusions: Given significant difficulties with recruitment, further research is needed to examine barriers and the impact of mental health literacy and stigma on help seeking in the AYA cancer survivor population. Internet-administered CBT self-help tailored towards the main presenting concerns of AYA cancer survivors may be a promising solution.

Keywords
Adolescence, Cancer, Cognitive behaviour therapy, Psychological treatment, Tonår, Cancer, Kognitiv beteendeterapi, Psykologisk behandling
National Category
Psychology
Research subject
Medical Science
Identifiers
urn:nbn:se:uu:diva-330126 (URN)
Funder
U‐Care: Better Psychosocial Care at Lower Cost? Evidence-based assessment and Psychosocial Care via Internet, a Swedish ExampleSwedish Childhood Cancer Foundation, 2016-0004, 2013-0039
Available from: 2017-10-31 Created: 2017-10-31 Last updated: 2017-10-31
4. 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
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
Show others...
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

Open Access in DiVA

fulltext(1180 kB)139 downloads
File information
File name FULLTEXT01.pdfFile size 1180 kBChecksum SHA-512
03f0d2ed55167392ff892e555af114c4eb7216232ceb4f9c95960205a717939b328c5a8154ef0a2b0505208cd2c206fd6efd19bfd546ae3e1a68a0c3db96a9bd
Type fulltextMimetype application/pdf
Buy this publication >>

Search in DiVA

By author/editor
Ander, Malin
By organisation
Clinical Psychology in Healthcare
Psychology

Search outside of DiVA

GoogleGoogle Scholar
Total: 139 downloads
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

isbn
urn-nbn

Altmetric score

isbn
urn-nbn
Total: 455 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf