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Cancer During Adolescence: Psychosocial Consequences and Methodological Issues
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
2008 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aim of this thesis was to investigate psychosocial consequences of cancer during adolescence, using a longitudinal approach. An additional aim was to investigate if mode of administration has an influence on adolescents’ and young adults’ self-reported psychosocial function.

In Study I participants, aged 13-23 years, were randomised according to two modes of administration, telephone interview and postal questionnaire, and asked to complete the Hospital Anxiety and Depression Scale (HADS) and Short Form 36 (SF-36). The telephone mode resulted in a higher response rate, better self-rated psychosocial function (except for the youngest age group), overall lower Cronbach’s alpha values, and a larger percentage of ceiling effects compared to the postal mode. A higher proportion of males than females chose not to participate in the postal mode. In Study II and III adolescents diagnosed with cancer completed the HADS and two sub-scales from the SF-36 (Mental Health and Vitality) 4-8 weeks, 6, 12, and 18 months after diagnosis. In Study II adolescents with cancer were compared to a reference group from the general population. Shortly after diagnosis the cancer group rated their psychosocial function as worse compared to the reference group. However, the differences gradually disappeared over time and were then reversed, resulting in the cancer group reporting better vitality and lower levels of anxiety and depression than the reference group eighteen months after diagnosis. In Study III five distinct psychosocial states were identified, characterised by: psychosocial dysfunction (state A), poor psychosocial function (state B), incomplete psychosocial function (state C), good psychosocial function (state D), and excellent psychosocial function (state E). Shortly after diagnosis more adolescents than expected by chance were found in states A and C and fewer were found in states D and E. Eighteen months after diagnosis a different pattern emerged, where more adolescents than expected were found in state E and fewer than expected in state C. In Study IV adolescents, two years after diagnosis, reported problems with physical impairment, intrusive thoughts, feelings of alienation, and problems catching up with school. However, a majority of the participants also reported positive consequences with regard to the cancer disease: a more positive view of life, good self-esteem, knowledge and experience with regard to disease and hospital care, good relations, broader perspectives, and material gains. Study V, a review of the literature, indicates that survivors of childhood/adolescent cancer do not differ from comparison groups with regard to relations to others and relation to self. However, some findings highlight that friendship and marital status are areas of concern, and parenthood and sexuality are areas of potential concern. In conclusion, mode of administration influences adolescents’ and young adults’ self-reported psychosocial function and is related to age. Psychosocial function increases with time from diagnosis for most adolescents diagnosed with cancer. However, some individuals remain in poor psychosocial states during the first eighteen months after diagnosis. Increased efforts should be taken to identify these individuals.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis , 2008. , p. 65
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 331
Keywords [en]
Caring sciences, adolescents, cancer, consequences, HADS, negative, positive, SF-36
Keywords [sv]
Vårdvetenskap
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:uu:diva-8643ISBN: 978-91-554-7160-6 (print)OAI: oai:DiVA.org:uu-8643DiVA, id: diva2:171824
Public defence
2008-05-08, Auditorium Minus, Gustavianum, Uppsala, 13:00 (English)
Opponent
Supervisors
Available from: 2008-04-17 Created: 2008-04-17 Last updated: 2012-01-04Bibliographically approved
List of papers
1. Mode of administration only has a small effect on data quality and self-reported health status and emotional distress among Swedish adolescents and young adults
Open this publication in new window or tab >>Mode of administration only has a small effect on data quality and self-reported health status and emotional distress among Swedish adolescents and young adults
2011 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 20, no 11-12, p. 1568-1577Article in journal (Refereed) Published
Abstract [en]

Aims. The aims were to investigate potential effects of mode of administration on response rate, internal consistency, completeness of data, floor and ceiling effects and interaction effects of mode of administration, gender and age on self-reported health status and emotional distress among Swedish adolescents and young adults. Design. A cross-sectional comparative study. Methods. Using a stratified quota sampling scheme, 840 adolescents and young adults (aged 13-23 years) were randomly chosen from the general population. Participants were randomised according to mode of administration, telephone interview or postal questionnaire. Results. The telephone mode resulted in a higher response rate than the postal mode and fewer men than women participated in the postal mode. Mode of administration only had a small effect on self-reports. The youngest adolescents did, in some respects, respond to the modes in a reverse pattern than the older participants. Conclusion. The findings support the use of the SF-36 and the HADS among persons 16-23 years of age. The strengths and weaknesses of a telephone and a postal mode to collect self-report data are discussed. Relevance for clinical practice. Nurses should consider the findings of this study, e.g. when using self-reports to screen for health status and emotional distress and when designing research studies.

Keywords
adolescents, HADS, mode of administration, nurses, nursing, SF-36, young adults
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:uu:diva-154545 (URN)10.1111/j.1365-2702.2010.03481.x (DOI)000290408000008 ()21323779 (PubMedID)
Available from: 2011-06-07 Created: 2011-06-07 Last updated: 2017-12-11Bibliographically approved
2. Health-related quality of life, anxiety and depression among adolescents and young adults with cancer: A prospective longitudinal study
Open this publication in new window or tab >>Health-related quality of life, anxiety and depression among adolescents and young adults with cancer: A prospective longitudinal study
2007 (English)In: European Journal of Cancer, ISSN 0959-8049, E-ISSN 1879-0852, Vol. 43, no 13, p. 1952-1958Article in journal (Refereed) Published
Abstract [en]

The present study sets out to add to knowledge about the development over time of health-related quality of life (HRQL), anxiety and depression among survivors of adolescent cancer. The aim was to investigate if and how the HRQL, anxiety and depression of a group of adolescents with cancer differ from those of a reference group shortly after diagnosis, and subsequently at 6, 12 and 18 months after diagnosis.

Adolescents diagnosed with cancer and a reference group randomised from the general population completed the Hospital Anxiety and Depression Scale (HADS) and the two subscales Mental Health and Vitality in the Short Form 36 (SF-36) in telephone interviews.

The results indicate a steady increase in psychological well-being from the time of diagnosis, when the cancer patients’ ratings were significantly worse than those of the general population, and onwards. The differences gradually disappeared and then were reversed, resulting in the cancer group reporting significantly better HRQL and lower levels of anxiety and depression than the reference group when 1.5 years had passed since diagnosis.

The adolescents faced with cancer show signs of adaptation to trauma, which can be understood in relation to the theoretical framework of posttraumatic growth as well as response shift. Future research should continue to follow this development over time, to investigate if the positive effects of the cancer experience will wear off, or if it has facilitated a permanent positive outcome.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:uu:diva-97042 (URN)10.1016/j.ejca.2007.05.031 (DOI)000250128300020 ()
Available from: 2008-04-17 Created: 2008-04-17 Last updated: 2017-12-14Bibliographically approved
3. Empirically derived psychosocial states among adolescents diagnosed with cancer during the acute and extended phase of survival
Open this publication in new window or tab >>Empirically derived psychosocial states among adolescents diagnosed with cancer during the acute and extended phase of survival
2009 (English)In: Annals of Oncology, ISSN 0923-7534, E-ISSN 1569-8041, Vol. 20, no 10, p. 1722-1727Article in journal (Refereed) Published
Abstract [en]

Patients and methods: Participants completed the Hospital Anxiety and   Depression Scale and two subscales, Vitality and Mental Health, in the   SF-36 4-8 weeks (T1) (n = 61), 6 (T2) (n = 57), 12 (T3) (n = 50), and   18 (T4) months (n = 48) after diagnosis. I-State as Object of Analysis   was used to identify a finite set of states based on three dimensions.   Cluster analysis was carried out using Ward's method.   Results: Five states were obtained: psychosocial dysfunction (state A)   and poor (B), incomplete (C), good (D), and excellent (E) psychosocial   function. At T1, more adolescents than expected by chance were in   states A (P < 0.05) and C (P < 0.01) and fewer in states D (P < 0.05)   and E (P < 0.001). At T4, more adolescents than expected by chance were   in state E (P < 0.001) and fewer in state C (P < 0.05). Female gender   and being in late adolescence when diagnosed is related to worse   psychosocial function.   Conclusion: The findings provide support for subgroups of adolescents   whose level of vitality, mental health, and anxiety differ during the   acute and extended phase of survival of cancer. Clinical interventions   tailored to the level of impairment as determined by the clusters may   result in better psychosocial outcomes.

Keywords
adolescents, cancer, cluster analysis, HADS, psychosocial function, SF-36
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:uu:diva-97043 (URN)10.1093/annonc/mdp066 (DOI)000270217700016 ()19549708 (PubMedID)
Available from: 2008-04-17 Created: 2008-04-17 Last updated: 2017-12-14Bibliographically approved
4. Positive and negative consequences with regard to cancer during adolescence: Experiences two years after diagnosis
Open this publication in new window or tab >>Positive and negative consequences with regard to cancer during adolescence: Experiences two years after diagnosis
2007 (English)In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 16, no 11, p. 1003-1009Article in journal (Refereed) Published
Abstract [en]

OBJECTIVES: The purpose was to explore negative and positive consequences of cancer during adolescence experienced two years after diagnosis. METHODS: Two years after diagnosis 38 persons, 15-21 years old, were asked two questions over the telephone: What, if anything, is bad for you due to the cancer disease? and What, if anything, is good for you due to the cancer disease? The answers were analysed by content analysis. RESULTS: Four categories of negative experiences were identified: a problematic body; unpleasant thoughts and feelings; outside the circle of friends; and difficulties with schoolwork. Six categories of positive experiences were identified: a more positive view of life; good self-esteem; knowledge and experience with regard to disease and hospital care; good relations; broader perspectives; and material gains. CONCLUSIONS: Two years after diagnosis those struck by cancer during adolescence experience not only a number of negative, but also positive, consequences of the cancer disease and its treatment.

Keywords
Adolescence, cancer, negative, oncology, positive
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:uu:diva-13351 (URN)10.1002/pon.1162 (DOI)000250819800005 ()17266181 (PubMedID)
Available from: 2008-06-24 Created: 2008-06-24 Last updated: 2017-12-11Bibliographically approved
5. Are there any positive consequences of childhood cancer?: A review of the literature
Open this publication in new window or tab >>Are there any positive consequences of childhood cancer?: A review of the literature
2008 (English)In: Acta Oecologica, ISSN 1146-609X, E-ISSN 1873-6238, Vol. 47, no 2, p. 199-206Article, review/survey (Refereed) Published
Abstract [en]

The aim was to investigate whether there are any positive consequences of childhood cancer. Studies published 1990-2005 reporting survivors' descriptions of positive consequences of childhood cancer were identified through a search in the databases CINAHL, PsycINFO, and PubMed. According to a manifest content analysis, positive consequences were referred to three themes: life values, relations to others, and relation to self. A second search in the same databases was conducted to identify studies investigating whether survivors of childhood cancer differ from comparison groups with regard to variables assigned to these themes. In these studies, no conclusions about positive consequences with regard to the theme life values can be drawn, as only one study was identified. In addition, only a small minority of findings from comparative studies indicate that childhood cancer has any positive consequences with regard to relations to others and relation to self. A majority of the results indicate that survivors do not differ from comparison groups, whereas some findings highlight that friendship and marital status are areas of concern, and parenthood and sexuality are areas of potential concern. It is recommended that survivors of childhood cancer are followed up by a multi-professional team, focusing not only on the survivors' health status but also on relations to family, friends, and partners.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:uu:diva-97045 (URN)10.1080/02841860701765667 (DOI)000254082900004 ()18210296 (PubMedID)
Available from: 2008-04-17 Created: 2008-04-17 Last updated: 2017-12-14Bibliographically approved

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