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  • 1.
    Ander, Malin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Grönqvist, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Cernvall, Martin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Engvall, Gunn
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    Hedström, Mariann
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    Lyhagen, Johan
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Statistics.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    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 study2016In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 25, no 5, p. 582-589Article in journal (Refereed)
    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

  • 2.
    Ander, Malin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Norberg, Annika Lindahl
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Ljotsson, Brjann
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Identification of Cancer-related Psychological Suffering Experienced by Young People Diagnosed with Cancer During Adolescence and Development of a Psychological Treatment to Reduce This Suffering2015Conference paper (Refereed)
  • 3.
    Ander, Malin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Thorsell Cederberg, Jenny
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    Lindahl Norberg, Annika
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Losing your context - Exploration of emotional suffering after cancer during adolescence2016Conference paper (Refereed)
  • 4.
    Ander, Malin
    et al.
    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.
    Thorsell Cederberg, Jenny
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    von Essen, Louise
    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.
    Hovén, Emma
    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. Karolinska institutet.
    Exploration of psychological distress experienced by survivors of adolescent cancer reporting a need for psychological support2018In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 13, no 4, article id e0195899Article in journal (Refereed)
    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.

  • 5.
    Ander, Malin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Toft, Teolinda
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Norberg, Annika Lindahl
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    U-CARE: YoungCan-Development of an Internet-Based Self-Help Program of Psychosocial Support and Psychological Treatment2013Conference paper (Refereed)
  • 6.
    Ander, Malin
    et al.
    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.
    Wikman, Anna
    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.
    Ljótsson, Brjánn
    Karolinska Inst, Div Psychol, Dept Clin Neurosci, Stockholm, Sweden.
    Grönqvist, Helena
    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.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Woodford, Joanne
    Univ Exeter, Coll Life & Environm Sci, CEDAR, Psychol, Exeter, Devon, England.
    Lindahl Norberg, Annika
    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.
    von Essen, Louise
    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.
    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 trial2017In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 7, no 1, article id e013906Article in journal (Refereed)
    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.

  • 7.
    Aneblom, Gunilla
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Larsson, Margareta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Tydén, Tanja
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Women's voices about emergency contraceptive pills "over-the-counter": a Swedish perspective2002In: Contraception, ISSN 0010-7824, E-ISSN 1879-0518, Vol. 66, no 5, p. 339-343Article in journal (Refereed)
    Abstract [en]

    This study aimed to describe women’s experiences with the emergency contraceptive pill (ECP) as a prescription-free over-the-counter (OTC) product. Women (median age 24) who had bought ECP as an OTC product were interviewed in focus groups. Data were analyzed by content analysis. All participants appreciated the OTC availability. Timesaving aspects were seen as important benefits and pharmacies were seen as the right place to sell ECP. The media was the main source of information about OTC, probably due to the debates of the introduction of ECP as an OTC product in Sweden. All women discussed the mechanism of action. The women’s experiences of interacting with the pharmacists were both positive and negative. Inconsistencies in routines with regard to providing ECP and different attitudes toward use of ECP among the pharmacists, were identified. The women expected up-to-date information about ECP and the OTC availability from gynecologists and other health professionals.

  • 8.
    Brantnell, Anders
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Olsson, Erik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Psychosocial care via internet, a mode to achieve improved patient care at a lower cost?2011Conference paper (Refereed)
    Abstract [en]

    The primary research objective of the U-CARE Program is to evaluate the clinical efficacy and cost-effectiveness of Internet-based self-managed programs of psychosocial care to patients and significant others. To reach this we have constructed an Internet-based platform. In order to plan for implementation we have carried out a stakeholder analysis and identified possible implementation strategies

  • 9. Broberger, Eva
    et al.
    Tishelman, Carol
    von Essen, Louise
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Discrepancies and similarities in how patients with lung cancer and their professional and family caregivers assess symptom occurrence and symptom distress.2005In: J Pain Symptom Manage, ISSN 0885-3924, Vol. 29, no 6, p. 572-83Article in journal (Refereed)
  • 10. Broberger, Eva
    et al.
    Tishelman, Carol
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Doukkali, Eva
    Sprangers, Mirjam A. G.
    Spontaneous reports of most distressing concerns in patients with inoperable lung cancer: at present, in retrospect and in comparison with EORTC-QLQ-C30+LC132007In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 16, no 10, p. 1635-1645Article in journal (Refereed)
    Abstract [en]

    Patients with lung cancer experience considerable distress. Therefore, accurate methods for assessing distress and quality of life over time may play a key role for managing and evaluating palliative care. Alternatives to commonly used standardized questionnaires are individual measures. This study prospectively and retrospectively explored the concerns that 46 patients with inoperable lung cancer spontaneously reported as causing most distress close to diagnosis and 6 months later. Changes in content individually generated through a structured inductive freelisting were compared with EORTC-QLQ-C30+LC13 ratings. The results showed that patients perceived a wide variety of concerns as most distressing and that their concerns changed over time. Between 56 and 62% of these concerns were assessed by items included in the EORTC-QLQ-C30+LC13 questionnaires. Furthermore, patients' reports of most distress from fatigue, pain and dyspnea were not always reflected in intensity ratings of comparable EORTC-QLQ-C30+LC13 items. These results indicate that items included in standardized measures are not always adequate to assess patients' concerns, priorities and changes over time. In addition to standardized questionnaires, individualized measures may be useful in the clinical palliative setting for providing detailed information about the individual's problems and prioritizations.

  • 11. Brédart, A.
    et al.
    Razavi, D.
    Robertson, C.
    Batel-Copel, L.
    Larsson, Gunnel
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Lichosik, D.
    Meyza, J.
    Schraub, S.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    de Haes, J. C.
    A comprehensive assessment of satisfaction with care: preliminary psychometric analysis in French, Polish, Swedish and Italian oncology patients2001In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 43, no 3, p. 243-252Article in journal (Refereed)
    Abstract [en]

    Satisfaction with care may be closely related to quality of life in cancer patients. This evaluation is especially relevant when quality of care is considered. The present study assessed whether equivalent scaling properties could be found in a comprehensive assessment of satisfaction with care (CASC) administered in cancer patients from French, Polish and Swedish oncology settings, in comparison to the scaling properties previously evidenced in the CASC with an Italian sample. A total of 140, 186 and 133 oncology patients were approached in France, Poland and Sweden, respectively. Specific items in the CASC were identified as consistently omitted across country samples. Multitrait scaling analysis on an item-grouping adapted for the French, Polish, Swedish and Italian samples provided excellent internal consistencies and convergent validity estimates. Discriminant validity proved less satisfactory, evidencing overlap between hypothesised care dimensions across country samples. The identification of omitted or overlapping items will lead to the design of a revised CASC version to further test in larger cross-cultural samples.

  • 12. Brédart, A.
    et al.
    Robertson, C.
    Razavi, D.
    Batel-Copel, L.
    Larsson, Gunnel
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Lichosik, D.
    Meyza, J.
    Schraub, S.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    De Haes, J.C.J.M.
    Patients' satisfaction ratings and their desire for care improvement across oncology settings from France, Italy, Poland and Sweden2003In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 12, no 1, p. 68-77Article in journal (Refereed)
    Abstract [en]

    There has been an increasing interest in patient satisfaction assessment across nations recently. This paper reports on a cross-cultural comparison of the comprehensive assessment of satisfaction with care (CASC) response scales. We investigated what proportion of patients wanted care improvement for the same level of satisfaction across samples from oncology settings in France, Italy, Poland and Sweden, and whether age, gender, education level and type of items affected the relationships found. The CASC addresses patient's satisfaction with the care received in oncology hospitals. Patients are invited to rate aspects of care and to mention for each of these aspects, whether they would want improvement.One hundred and forty, 395, 186 and 133 consecutive patients were approached in oncology settings from France, Italy, Poland and Sweden, respectively. Across country settings, an increasing percentage of patients wanted care improvement for decreasing levels of satisfaction. However, in France a higher percentage of patients wanted care improvement for high-satisfaction ratings whereas in Poland a lower percentage of patients wanted care improvement for low-satisfaction ratings. Age and education level had a similar effect across countries. Confronting levels of satisfaction with desire for care improvement appeared useful in comprehending the meaning of response choice labels for the CASC across oncology settings from different linguistic and cultural background. Linguistic or socio-cultural differences were suggested for explaining discrepancies between countries.

  • 13.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Alaie, Iman
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    The factor structure of traumatic stress in parents of children with cancer: A longitudinal analysis2012In: Journal of Pediatric Psychology, ISSN 0146-8693, E-ISSN 1465-735X, Vol. 37, no 4, p. 448-457Article in journal (Refereed)
    Abstract [en]

    Objectives To determine the factor structure of posttraumatic stress symptoms (PTSS) and assess its stability over time among parents of children diagnosed with cancer. 

    Methods  Parents of children with cancer included in a longitudinal study completed the posttraumatic stress disorder (PTSD) Checklist–Civilian Version 2 weeks (n = 249) and 2 (n = 234) and 4 (n = 203) months after their child's diagnosis. Confirmatory factor analysis (CFA) was used to assess 3 models of the underlying dimensions of PTSD and invariance tests were used to assess stability over time. 

    Results  A longitudinal CFA with the factors reexperiencing, avoidance, dysphoria, and hyperarousal provided best fit to the data. Invariance testing suggested that the pattern and size of loadings were equivalent across the three assessments. 

    Discussions Findings tentatively suggest that PTSS among parents of children with cancer consist of four factors. Implications for research and clinical practice are discussed.

  • 14.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Carlbring, Per
    Department of Psychology, Umeå University.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Guided self-help as intervention for traumatic stress in parents of children with cancer: Conceptualization, intervention strategies, and a case study2013In: Journal of psychosocial oncology, ISSN 0734-7332, E-ISSN 1540-7586, Vol. 31, no 1, p. 13-29Article in journal (Refereed)
    Abstract [en]

    Being a parent of a child diagnosed with cancer poses an enormous stressor. Indeed, several parents have difficulties adjusting to such a situation and react with symptoms of traumatic stress, depression, and reduced quality of life. However, there is little conceptual work on behavioral mechanisms that contribute to suboptimal adaptation in these parents. The authors present a conceptualization in which experiential avoidance and rumination are suggested to contribute to increased levels of traumatic stress and suboptimal adaption. Based on this conceptualization, a recently developed intervention for parents of children with cancer, in the form of guided self-help, is presented. Finally, the authors present a successful case study as an example of the application of this intervention. Clinical implications and suggestions for future research are discussed.

  • 15.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Carlbring, Per
    Institutionen för psykologi, Umeå universitet.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Guided self-help as intervention for traumatic stress in parents of children with cancer: Conceptualization, intervention strategies, and two case studies2012Conference paper (Refereed)
  • 16.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Carlbring, Per
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Guided Self-help via the Internet for Parents of Children Recently Diagnosed with Cancer: A Randomized Controlled Trial2014Conference paper (Refereed)
  • 17.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Carlbring, Per
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Health Economic Outcomes One Year after Internet-based Guided Self-help Targeting Posttraumatic Stress Symptoms in Parents of Children Recently Diagnosed with Cancer: A Randomized Controlled Trial2015Conference paper (Refereed)
  • 18.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, University Hospital.
    Carlbring, Per
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Internet-based Guided Self-help for Parents of Children Diagnosed with Cancer: 1-year Follow-up of a Randomized Controlled Trial2015Conference paper (Other academic)
  • 19.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Carlbring, Per
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Internet-based guided self-help for parents of children on cancer treatment: A randomized controlled trial2015In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 24, no 9, p. 1152-1158Article in journal (Refereed)
    Abstract [en]

    Objective

    The aim of the study was to investigate the feasibility and preliminary efficacy of an Internet-based guided self-help intervention for posttraumatic stress symptoms (PTSS) and related symptoms in parents of children on cancer treatment.

    Methods

    Parents of children on cancer treatment, who fulfilled the modified symptom criteria on the PTSD Checklist, were randomly allocated to the intervention or to a wait-list control condition. The intervention group accessed a 10-week guided self-help program via the Internet based on principles from cognitve behavior therapy. The primary outcome PTSS and the secondary outcomes depression and anxiety were assessed by self-report preintervention and postintervention.

    Results

    Seven hundred forty-seven parents were approached and informed about the study, 92 were assessed for eligibility, and 58 were included and randomized to the intervention (n = 31) or wait list (n  = 27). Eightteen participants completed the intervention. Intention-to-treat analyses indicated a significant effect of the intervention on PTSS with a large between-group effect size at postassessment (Cohen's d = 0.88). The intervention group reported reductions in PTSS with a large within-group effect size (d = 1.62) compared with a minimal reduction in the wait-list group (d  = 0.09). There was a significant intervention effect on depression and anxiety and reductions in the intervention group with large within-group effect sizes (d = 0.85–1.09).

    Conclusions

    Findings indicate a low enrollment rate and considerable attrition but also that Internet-based guided self-help shows promise for parents of children on cancer treatment who report a high level of PTSS and would like to take part in an Internet-based intervention.

  • 20.
    Cernvall, Martin
    et al.
    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.
    Carlbring, Per
    Wikman, Anna
    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.
    Ljungman, Lisa
    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.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    von Essen, Louise
    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.
    Twelve-Month Follow-Up of a Randomized Controlled Trial of Internet-Based Guided Self-Help for Parents of Children on Cancer Treatment2017In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 19, no 7, article id e273Article in journal (Refereed)
    Abstract [en]

    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.

  • 21.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, University Hospital.
    Hovén, Emma
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Carlbring, Per
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Attentional bias towards cancer-related stimuli is related to symptoms of posttraumatic stress in parents of children recently diagnosed with cancer2015Conference paper (Refereed)
  • 22.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Hovén, Emma
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Carlbring, Per
    Stockholm Univ, Dept Psychol, S-10691 Stockholm, Sweden.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Posttraumatic stress and attentional bias towards cancer-related stimuli in parents of children recently diagnosed with cancer2016In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 11, no 4, article id e0152778Article in journal (Refereed)
    Abstract [en]

    Objectives: To investigate whether posttraumatic stress symptoms (PTSS) are related to attentional bias towards cancer-related stimuli among parents of children recently diagnosed with cancer.

    Methods: Sixty-two parents completed questionnaires measuring PTSS, depression, and anxiety and the emotional Stroop task via the Internet. The emotional Stroop task included cancer-related words, cardiovascular disease-related words, and neutral words.

    Results: Participants were split in two groups based on the median of PTSS: High-PTSS and Low-PTSS. There was a significant interaction between word-type and group and a planned contrast test of this interaction indicated that the High-PTSS group had longer response latencies on cancer-related words compared to the other word-type and group combinations.

    Conclusions: Findings suggest that PTSS are related to attentional bias towards cancer-related stimuli among parents of children recently diagnosed with cancer. Implications of this finding for the understanding of PTSS in this population, future research, and clinical practice are discussed.

  • 23.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Silberleitner, Nicola
    University of Konstanz, Department of Psychology, Konstanz, Germany.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Avoidance and hyperarousal mediates the relationship between reexperiencing and dysphoria in parents of children with cancer: a longitudinal analysis2012In: 12th International Congress of Behavioral Medicine, 2012Conference paper (Refereed)
    Abstract [en]

    There is little theoretical and empirical work regarding the mechanisms underlying the development of traumatic stress among parents of children with cancer. Such work would add to the understanding of this phenomenon and could inform intervention strategies for this group. Cognitive processing theory stipulates that avoidance mediates the relationship between intrusive thoughts about trauma and psychological distress (Creamer, et al., 1992). Evidence also suggests that hyperarousal predicts emotional numbing in response to trauma (Litz, et al., 1997; Weems, et al., 2003). The purpose of this study was to investigate the mediating role of avoidance and hyperarousal in the relationship between reexperiencing and dysphoria among parents of children on cancer treatment.

    We used data from a longitudinal study with three assessment points: T1 = 2 weeks after the child´s diagnosis (n = 249), T2 = two months after the child´s diagnosis (n = 234), and T3 = four months after diagnosis (n = 203). The PTSD-Checklist Civilian was used as a measure of symptoms of traumatic stress interpreted with Simms et al. (2002) four-factor theory of traumatic stress. Two models were evaluated with mediation analysis using bias corrected bootstrap estimation of indirect effects and 95% confidence intervals (CI; Preacher and Hayes, 2008). The first model included two indicators of avoidance at T2 as mediators of the relationship between reexperiencing at T1 and dysphoria at T3, while controlling for initial levels of included variables and gender. In the second model hyperarousal at T2 was added as a mediator.

    In the first model there was a significant total indirect effect from reexperiencing to dysphoria via avoidance (0.048, CI = 0.012-0.116). However, only avoidance of activities or situations reminding of the child´s disease had a significant specific indirect effect (0.044, CI = 0.009-0.097). In the second model there was a significant total indirect effect from reexperiencing to dysphoria via avoidance and hyperarousal (0.140, CI = 0.076-0.233). However, only hyperarousal contributed with a significant specific indirect effect (0.110, CI = 0.061-0.212).

    The current analyses suggest that avoidance and hyperarousal both are important targets for intervention in this population.

  • 24.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Silberleitner, Nicola
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Avoidance and hyperarousal mediate the relationship between reexperiencing and dysphoria in parents of children with cancer: a longitudinal analysis2012Conference paper (Refereed)
  • 25.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, University Hospital.
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology.
    Development, Testing, and Evaluation of an Online, Guided, Psychological Intervention for Parents of Children Previously Treated for Cancer2015Conference paper (Refereed)
  • 26.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, University Hospital.
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Wikman, Anna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Carlbring, Per
    Stockholm Univ, Stockholm, Sweden..
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    von Essén, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health. Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology.
    Dimensions of Posttraumatic Stress Symptoms and their Relationships with Depression, Anxiety, and Quality of Life in Parents of Children Recently Diagnosed with Cancer2016In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 25, no SP. S3, p. 76-76Article in journal (Other academic)
  • 27.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Skogseid, Ellen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Carlbring, Per
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Experiential Avoidance and Rumination in Parents of Children on Cancer Treatment: Relationships with Posttraumatic Stress Symptoms and Symptoms of Depression2016In: Journal of clinical psychology in medical settings, ISSN 1068-9583, E-ISSN 1573-3572, Vol. 23, no 1, p. 67-76Article in journal (Refereed)
    Abstract [en]

    We conducted a cross-sectional survey study to investigate whether there is a relationship between experiential avoidance (EA), rumination, post-traumatic stress symptoms (PTSS), and symptoms of depression, in parents of children on cancer treatment. Data from 79 parents (55 mothers) of 79 children with a median of three months since their cancer diagnosis were included in cross-sectional analyses. EA and rumination were positively correlated with PTSS and symptoms of depression. EA and rumination did not provide incremental explained variance in PTSS over and above that explained by symptoms of depression, while controlling for symptoms of anxiety and demographic characteristics. However, EA and rumination provided incremental explained variance in symptoms of depression over and above that explained by PTSS, while controlling for symptoms of anxiety and demographic characteristics. Rumination and EA are important constructs in the understanding of PTSS and symptoms of depression in parents of children on cancer treatment. Future research should delineate the temporal relationships between these constructs.

  • 28.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Skogseid, Ellen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care. Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology.
    The relationship between traumatic stress, experiential avoidance, and depression in parents of children recently diagnosed with cancer2012In: 12th international Congress of Behavioral Medicine, 29 August - 1 September 2012, Budapest Hilton Hungary: Program Book, 2012, p. 138-138Conference paper (Refereed)
    Abstract [en]

    Parents of children recently diagnosed with cancer can experience severe psychosocial distress. Experiential avoidance has been defined as the tendency to avoid or escape from certain private experiences (e.g., thoughts, feelings, memories) or contexts that elicit them (Hayes et al., 1996). This construct has been shown to be linked to distress in several populations and has received increased interest as a target for intervention. The purpose of this study was to investigate the relationship between traumatic stress, experiential avoidance, and depression in parents of children recently diagnosed with cancer. It was hypothesized that experiential avoidance would account for the relationship between traumatic stress and depression. 

    48 parents (33 mothers and 15 fathers) of children recently diagnosed with cancer and who participated in the screening/pre-assessment of a RCT of a psychosocial intervention were included in the current cross-sectional study. The mean (SD) of months since the child’s diagnosis was 3.5 (1.8). Parents provided self-report of demographic characteristics, general anxiety, traumatic stress, experiential avoidance, and depression.

    Hierarchical regression was used with depression as dependent variable. In step 1 demographic variables and general anxiety was entered (∆R2 = .57, p < .001). In step 2 traumatic stress was added resulting in a significant increase in explained variance (∆R2 = .04, p < .05, β for traumatic stress = 0.39, p < .05). In step 3 experiential avoidance was added resulting in a significant increase in explained variance (∆R2 = .06, p < .05, β for experiential avoidance = 0.35, p < .05). Furthermore, traumatic stress was no longer a significant predictor of depression (β = 0.15, p = 40). Total R2 in the final model was .68. Mediation analysis (Preacher & Hayes, 2008) confirmed a significant indirect effect from traumatic stress to depression via experiential avoidance (estimate = 0.21, bootstrap 95% CI = 0.03-0.38). 

    The current results suggest that experiential avoidance accounts for the relationship between traumatic stress and depression in parents of children recently diagnosed with cancer. Experiential avoidance could be a potential target in psychosocial interventions for this group.

  • 29.
    Ekstrand, Maria
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Larsson, Margareta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Tydén, Tanja
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Swedish teenager perceptions of teenage pregnancy, abortion, sexual behavior, and contraceptive habits: a focus group study among 17-year-old female high-school students2005In: Acta Obstetricia et Gynecologica Scandinavica, ISSN 0001-6349, E-ISSN 1600-0412, Vol. 84, no 10, p. 980-986Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Sweden has the highest abortion numbers among the Nordic countries. Since 1995, the abortion rate among teenagers has increased by nearly 50%. We therefore undertook a study where the overall aim was to gain a deeper understanding on which factors female teenagers believe may explain the increasing numbers of teenage abortions. Teenagers' perceptions of teenage pregnancy, abortion, sexual behavior, and contraceptive habits were investigated. METHODS: Six focus group interviews with 17-year-old Swedish girls were conducted. The interviews were tape-recorded, transcribed verbatim, and analyzed by manifest content analysis. RESULTS: Negative attitudes toward teenage pregnancy and supportive attitudes toward abortion were expressed. Risk-taking behaviors such as negligence in contraceptive use and intercourse under the influence of alcohol were suggested as main reasons behind the increasing numbers of abortions among Swedish teenagers. The contemporary, sexualized, media picture was believed to influence adolescents' sexual behavior, and liberal attitudes toward casual sex were expressed. Girls were perceived as more obliged than boys in taking responsibility for contraceptive compliance and avoidance of pregnancy. The apprehension that hormonal contraceptives cause negative side-effects was widely spread, and the participants were found to have a somewhat limited knowledge of abortion. The majority were unsatisfied with the quality of sexual education provided by the schools. CONCLUSION: Possible reasons for increased abortion numbers among teenagers in Sweden could be liberal attitudes toward casual sex in combination with negligence in contraceptive use, use of alcohol followed by sexual risk-taking, fear of hormonal contraceptives, and a deterioration of sexual education in the schools.

  • 30.
    Engvall, Gunn
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Cernvall, Martin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Larsson, Gunnel
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    Cancer during adolescence: negative and positive consequences reported during the acute and extended phase of survival.2011Conference paper (Refereed)
  • 31.
    Engvall, Gunn
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Cernvall, Martin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Larsson, Gunnel
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Cancer during adolescence: negative and positive consequences reported three and four years after diagnosis2011In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 6, no 12, p. e29001-Article in journal (Refereed)
    Abstract [en]

    Persons diagnosed with cancer during adolescence have reported negative and positive cancer-related consequences two years after diagnosis. The overall aim was to longitudinally describe negative and positive cancer-related consequences reported by the same persons three and four years after diagnosis. A secondary aim was to explore whether reports of using vs. not using certain coping strategies shortly after diagnosis are related to reporting or not reporting certain consequences four years after diagnosis. Thirty-two participants answered questions about coping strategies shortly after diagnosis and negative and positive consequences three and four years after diagnosis. Answers about consequences were analysed with content analysis, potential relations between coping strategies and consequences were analysed by Fisher's exact test. The great majority reported negative and positive consequences three and four years after diagnosis and the findings indicate stability over time with regard to perceived consequences during the extended phase of survival. Findings reveal a potential relation between seeking information shortly after diagnosis and reporting a more positive view of life four years after diagnosis and not using fighting spirit shortly after diagnosis and not reporting good self-esteem and good relations four years after diagnosis. It is concluded that concomitant negative and positive cancer-related consequences appear stable over time in the extended phase of survival and that dialectical forces of negative and positive as well as distress and growth often go hand-in-hand after a trauma such as cancer during adolescence.

  • 32.
    Engvall, Gunn
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Hedström, Mariann
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Findings on how adolescents cope with cancer: a matter of methodology?2011In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 20, no 10, p. 1053-1060Article in journal (Refereed)
    Abstract [en]

    Objectives: The various conclusions drawn from previous studies on how adolescents cope with cancer might partly be explained by methodological issues. The aim was to explore how adolescents recently diagnosed with cancer report that they cope with disease- and treatment-related distress in response to closed- and open-ended questions, respectively.Methods: Adolescents diagnosed with cancer 4-8 weeks ago (N=56) answered closed- and open-ended questions over the telephone about which coping strategies they use to cope with physical concerns, personal changes, feelings of alienation, and worries.Results: In response to closed-ended questions, most adolescents reported using emotion-focused coping (Accepting and Minimising) while, in response to open-ended questions, meaning-based (i.e. Positive thinking) and problem-focused (i.e. Problem solving) coping were most often mentioned. A majority reported using Minimising and Seeking support in response to closed-ended questions, but very few adolescents mentioned using these strategies in response to open-ended questions.Conclusions: Adolescents' reports of how they cope with disease- and treatment-related distress vary depending on antecedent closed- and open-ended questions. Responses to closed-ended questions appear to be more indifferent to aspects of distress than responses to open-ended questions. Strategies representing meaning-based coping should be included in future studies investigating how adolescents recently diagnosed with cancer cope with disease- and treatment-related distress.

  • 33.
    Engvall, Gunn
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Skolin, Inger
    Department of Laboratory Medicine, Section of Clinical Physiology, Karolinska Institutet, Stockholm.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Hedström, Mariann
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Are nurses and physicians able to assess which strategies adolescents recently diagnosed with cancer use to cope with disease- and treatment-related distress?2011In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 19, no 5, p. 605-611Article in journal (Refereed)
    Abstract [en]

    PURPOSE: It was examined whether nurses and physicians are able to identify whether adolescents with cancer have used certain strategies to cope with disease- and treatment-related distress. METHOD: Adolescents (N = 48) were asked whether they had used a number of strategies to cope with disease- and treatment-related distress and, if so, the extent to which they had used these. Nurses and physicians were asked to answer the same questions on behalf of a certain adolescent. RESULTS: Nurses overestimate the extent to which adolescents use strategies to cope with distress, and neither nurses nor physicians, physicians somewhat more, are successful in identifying the extent to which certain adolescents use strategies. CONCLUSION: Health-care staff's possibilities to assess how patients cope with disease- and treatment-related distress should be increased. A number of changes in education and the organization of clinical care, especially with regard to assessing patients' needs, are suggested.

  • 34.
    Engvall, Gunn
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Longitudinally derived psychosocial states among individuals diagnosed with cancer during adolescence up to four years after diagnosis2011Article in journal (Refereed)
  • 35.
    Enskär, K.
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Carlsson, Marianne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Kreuger, Anders
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Hamrin, E.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Development of a tool to measure the life situation of parents of children with cancer1997In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 6, no 3, p. 248-256Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to test the validity and reliability of the recently developed Life Situation Scale for Parents (LSS-P) among parents of children with cancer. One hundred and ten parents of seventy-four children and adolescents who visited three paediatric wards in Sweden filled out three instruments: The LSS-P, the Quality of Life Scale and the Family Support Scale. The reliability coefficient, Cronbach's alpha, was found to be 0.82 for the LSS-P. A factor analysis with orthogonal varimax rotation of 37 items of the LSS-P gave twelve factors. A higher order factor analysis reduced the factors to four (Care, Well-being, Social life and Preparedness), explaining the underlying dimensions to 57.9%. The total LSS-P correlated significantly with the Quality of Life Scale, and the higher order factor Care with the Family Support Scale. The LSS-P discriminated, in some aspects, between two-parent visiting the ward for treatment or check-up. The conclusion is that this first version of the LSS-P was valid and reliable (internal consistency) to a certain extent, but that the instrument should be tested on larger samples and during different phases of the disease.

  • 36. Enskär, K.
    et al.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Important aspects of care and assistance for children with cancer2000In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 17, no 4, p. 239-249Article in journal (Refereed)
    Abstract [en]

    This study examined aspects of care and assistance that are important for 8- to 12-year-old children with cancer. Data were gathered through interviews with 25 children, 31 parents, and 32 nurses. Each participant was asked: "What caring aspects are important for you/your child/the child to feel cared for?" and "What help, if any, do you/your child/the child need outside the hospital?" Data were analyzed by content analysis. The following important caring aspects were identified: amusement, clinical competence, continuity, family participation, honest communication, information, participation in decision making, satisfaction of basic needs, social competence, and time. Children most frequently mentioned the importance of social competence, amusement, and satisfaction of basic needs. Parents and nurses most frequently mentioned the importance of information, social competence, and participation in decision making. The following important assistance aspects were also identified: emotional support, family life, meeting friends, practical support, rehabilitation, and school support. Two-thirds of the children did not mention that they needed any help outside the hospital. According to parents and nurses, one third of the children needed emotional support, whereas none of the children mentioned a need for this.

  • 37. Enskär, Karin
    et al.
    Hamrin, Elisabeth
    Carlsson, Marianne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Swedish mothers and fathers of children with cancer: perceptions of well-being, social life, and quality care2011In: Journal of psychosocial oncology, ISSN 0734-7332, E-ISSN 1540-7586, Vol. 29, no 1, p. 51-66Article in journal (Refereed)
    Abstract [en]

    The overall aim was to describe and compare well-being, social life, and quality care among parents of children with cancer with respect to mothers versus fathers and whether the children were on versus. off treatment. The Life Situation Scale for Parents (LSS-P) was answered by 320 parents, comprising 85 mothers and 71 fathers of children on treatment, and 93 mothers and 71 fathers of children off treatment. The results show that the well-being of parents of children with cancer is affected by their child's situation, and that they experience such things as economic strain and a sense of being dependent on the care provided, especially during the child's treatment phase. Mothers whose children are receiving treatment see their life situation as less satisfying, and report being sadder and having lower self-esteem.

  • 38. Enskär, Karin
    et al.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Physical problems and psychosocial function in children with cancer2008In: Paediatric nursing, ISSN 0962-9513, Vol. 20, no 3, p. 37-41Article in journal (Refereed)
    Abstract [en]

    AIM: to describe the physical disease and treatment-related problems and psychosocial function among children with cancer. METHOD: Thirty-nine children aged seven to 12 years of age who visited three pediatric wards in Sweden answered the Life Situation Scale for Children. RESULTS: The most frequently reported physical problem was fatigue. Children receiving cancer treatment reported more physical problems than a comparative group who had completed treatment. The results also show that more children experience psychosocial than physical distress, and that not being able to attend school as much as they wished could explain reporting life to be less than satisfying. CONCLUSION: The findings indicate the importance for nurses working with children with cancer to be aware that the treatment period is associated with more distress than the period after treatment and that more children seem to be bothered by psychosocial distress than physical aspects of the disease and treatment.

  • 39. Enskär, Karin
    et al.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Prevalence of aspects of distress, coping, support and care among adolescents and young adolescents undergoing and being off cancer treatment2007In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 11, no 5, p. 400-408Article in journal (Refereed)
    Abstract [en]

    The overall aim is to describe the prevalence of physical and psychosocial distress, coping, support and care among adolescents and young adults who are both undergoing and off cancer treatment, and who find life satisfying or less satisfying. Prevalence of distress, coping, support and care were investigated using the Life Situation Scale for Adolescents (LSS-A) answered by 15 adolescents and young adults undergoing cancer treatment and 39 adolescents and young adults off cancer treatment. More adolescents and young adults receiving treatment reported problems with fatigue, eating, hair toss, taking medications/ tablets and having to plan everything according to hospital visits than those adolescents and young adults off treatment. Fewer adolescents and young adults who reported finding Life satisfying reported problems with fatigue, eating, not having any influence on their own Life, often being sad and problems with school/work than those finding life less satisfying. Whether adolescents and young adults find life satisfying or not is not related to whether they are undergoing or off cancer treatment. The findings indicate the importance for those working with adolescent cancer victims to be alert of the fact that the treatment period is connected with more problems related to physical distress than the period after treatment, whereas aspects of psychosocial distress are as prevalent during the treatment period as they are after.

  • 40.
    Fröjd, Camilla
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Lampic, Claudia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Larsson, Gunnel
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Birgegård, Gunnar
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Patient attitudes, behaviours, and other factors considered by doctors when estimating cancer patients' anxiety and desire for information2007In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 21, no 4, p. 523-529Article in journal (Refereed)
    Abstract [en]

    The aim was to describe the patient attitudes, behaviours, and other factors, considered by doctors when estimating cancer patients' worry about how the disease may develop and the desire for information about the disease and its treatment. Data was gathered through semi-structured interviews with 19 doctors regarding 29 patients within endocrine oncology and haematology care, and the data were analysed by content analysis. The doctors considered the patients' verbal expressions, verbal behaviours, questions, body language, and facial expressions together with their own professional knowledge and experience, when estimating the patients' worry and desire for information. The doctors also considered contextual factors, patients' demographical factors, and medical situation when estimating the patients' worry, and also when estimating the patients' desire for information. The findings illustrate that estimating patients' worry and desire for information is a multifaceted and complex task, and that doctors consider not only the patients' verbal and nonverbal cues, but also factors, such as their own professional knowledge and experience, contextual factors, and patients' demographical variables. The findings should be communicated to doctors who meet cancer patients in medical consultations in order to illuminate the complexity of the medical consultation. The awareness of potentially important patient cues and other factors may aid doctors in their efforts to gain insight about their patients' emotions and informational needs.

  • 41.
    Fröjd, Camilla
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Lampic, Claudia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Larsson, Gunnel
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Is satisfaction with doctors' care related to health related quality of life, anxiety, and depression among patients with carcinoid tumours?: A longitudinal report2009In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 23, no 1, p. 107-116Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to investigate (i) whether specific aspects of the initial consultation (IC) and/or patients' satisfaction with doctors' care are related to health-related quality of life (HRQoL), anxiety and depression among patients with carcinoid tumours and (ii) whether patients' satisfaction with doctors' care changes over time. The study has a longitudinal design. The HRQoL and psychosocial function among patients who met the doctors showing good ability to identify patients' worry and wish for information were compared with those patients who met doctors showing less good ability. Patients' HRQoL, anxiety, depression and satisfaction with doctors' care were assessed longitudinally, shortly after each of the first four admissions to specialist care. Patients who met doctors showing good ability to identify their wish for information at the IC reported higher levels of cognitive function. Higher satisfaction with doctors' care was related to higher emotional and cognitive function, to higher global QoL, and to lower levels of problems with diarrhoea, financial difficulties, constipation, anxiety and depression shortly after each of the first three admissions, although not after the fourth admission to the specialist care. Although most patients with carcinoid tumours report high satisfaction with care, it is important to be aware of the fact that some patients may be less satisfied. Doctors should provide patients with information which matches the individual patients' needs and preferences as patients' satisfaction with doctors' provision of information is related to patients' HRQoL, anxiety and depression.

  • 42.
    Fröjd, Camilla
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Larsson, Gunnel
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Lampic, Claudia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Health related quality of life and psychosocial function among patients with carcinoid tumours. A longitudinal, prospective, and comparative study2007In: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 5, p. 18-Article in journal (Refereed)
    Abstract [en]

    Background: The aim was to investigate HRQoL and psychosocial function among patients with carcinoid tumours, longitudinally and prospectively, and to compare HRQoL among patients with carcinoid tumours to that of the Swedish general population. The aim was also to investigate the prevalence of distress during the first year after diagnosis. Methods: At four assessments during the first year after diagnosis, HRQoL was measured by the EORTC QLQ-C30 3.0, anxiety and depression by the HADS, and prevalence, and worst aspects of distress by an interview guide. ANOVA was performed in order to study changes over time with regard to HRQoL, anxiety and depression. Comparisons regarding HRQoL between patients and the Swedish population were made by the use of one-sample t-tests and changes over time regarding the prevalence of distress was investigated by means of Cochran's Q. Results: High levelsof physical-, emotional-, cognitive-, and social function and somewhat lower levels of role function and global quality of life were reported at all assessments. Role- and emotional function increased over time. Patients reported lower role function and global quality of life and more problems with fatigue and diarrhoea than the Swedish general population, at all assessments. Fatigue, limitations to work and pursue daily activities, and worry that the illness will get worse were among the most prevalent aspects at all assessments. At all assessments the majority reported worrying about the family's situation, the ability to care for the family, and worrying before the check-up. Conclusion: It is concluded that HRQoL and psychosocial function among patients with carcinoid tumours remains stable during the first year, that the patients report a lower HRQoL than the Swedish general population, and that a majority of the patients report a number of aspects of emotional distress. In the clinical care, it should be considered that the majority of patients report not only fatigue and diarrhoea but also worries about their prognosis, their families, tests, and examinations. Efforts to reduce these worries should be made.

  • 43.
    Fröjd, Camilla
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Is doctors' ability to identify cancer patients' worry and wish for information related to doctors' self-efficacy with regard to communicating about difficult matters?2006In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 15, no 4, p. 371-378Article in journal (Refereed)
    Abstract [en]

    The aims were to investigate whether: (A) doctors' ability to identify patients' worry about prognosis/wish for information about disease and treatment is related to doctors' self-efficacy with regard to communicating about difficult matters and patients' satisfaction with a consultation/hope to live a good life in spite of the disease; and (B) patients and doctors agree on how much worry/wish for information a patient experiences/wishes. Sixty-nine patients with carcinoid and 11 doctors participated. Ability to identify worry/wish for information was estimated by posing questions to doctors/patients concerning how much worry/information a patient experienced/wished during a consultation. Doctors' self-efficacy was measured by nine questions, patients' satisfaction and hope by two questions. When doctors show good ability to identify wish for information, they report higher self-efficacy (t = 3.5, d.f. = 67, P < 0.001) than when they show less good ability. Patients finding the consultation very satisfying meet doctors reporting higher self-efficacy than patients finding the consultation satisfying (t = 2.26, d.f. = 65, P < 0.05). Doctors fail to identify patients who report less worry/wish more information than the average patient. The findings underscore the importance of further enhancing doctors' self-efficacy with regard to communicating about difficult matters and ability to identify patients who are less worried/wish more information than the average patient.

  • 44.
    Grönqvist, Helena
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Ander, Malin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Lindahl Norberg, Annika
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Toft, Teolinda
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    U-CARE: Adolescent involvement in psychosocial research including the design of an internet based psychological intervention2013Conference paper (Refereed)
  • 45.
    Grönqvist, Helena
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Hovén, Emma
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Swedish parents’ need and opportunity to talk to a psychologist after end of their child’s cancer treatment: a longitudinal study2015Conference paper (Refereed)
  • 46.
    Grönqvist, Helena
    et al.
    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.
    Olsson, Erik
    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.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology. 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.
    Held, Claes
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Cardiology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, UCR-Uppsala Clinical Research Center. 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.
    Sjöström, Jonas
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Informatics and Media. 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.
    Lindahl Norberg, Annika
    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. Centre for Occupational and Environmental Medicine, Stockholm County Council, Stockholm, Sweden..
    Hovén, Emma
    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.
    Sanderman, Robbert
    Department of Health Psychology, University Medical Center Groningen, University of Groningen, Groningen, Netherlands; Department of Psychology, Health and Technology, University of Twente, Enschede, Netherlands..
    van Achterberg, Theo
    Academic Centre for Nursing and Midwifery, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.
    von Essen, Louise
    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.
    Fifteen Challenges in Establishing a Multidisciplinary Research Program on eHealth Research in a University Setting: A Case Study2017In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 19, no 5, article id e173Article in journal (Refereed)
    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.

  • 47.
    Grönqvist, Helena
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Olsson, Erik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Norlund, Fredrika
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Wallin, Emma
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology.
    Burell, Gunilla
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Hursti, Timo
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Held, Claes
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, UCR-Uppsala Clinical Research Center.
    U-CARE Heart: A Randomized Controlled Study of the Effects of Internet-based Cognitive Behavior Therapy on Depression and Anxiety in Patients with a Previous Myocardial Infarction: A Clinical Trial Protocol2013Conference paper (Refereed)
  • 48.
    Haglund, Kristina
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    van der Meiden, Eva
    von Knorring, Lars
    von Essen, Louise
    Locked entrance doors at psychiatric wards. Occurrence and reasons.In: Article in journal (Refereed)
  • 49.
    Haglund, Kristina
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, University Hospital.
    van der Meiden, Eva
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    von Knorring, Lars
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, University Hospital.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Psychiatric care behind locked doors. A study regarding the frequency of and the reasons for locked psychiatric wards in Sweden2007In: Journal of Psychiatric and Mental Health Nursing, ISSN 1351-0126, E-ISSN 1365-2850, Vol. 14, no 1, p. 49-54Article in journal (Refereed)
    Abstract [en]

    The general aim was to describe the frequency of and the reasons for locked doors at wards within Swedish psychiatric care. A questionnaire was answered by 193 ward managers. The findings demonstrated that 73% (n = 193) of the wards were locked on the day of investigation. Wards were sometimes locked in the absence of committed patients and sometimes open in the presence of committed patients. Wards were more often locked if at least one committed patient was present. Fewer wards for children and adolescents, than for adults and old people, were locked. More wards in the areas of Sweden's three largest cities, than in the rest of the country, were locked. Fourteen categories of reasons for locking wards were generated by a content analysis of answers to an open-ended question. Most answers were categorized as: prevent patients from escaping, legislation, provide patients and others with safety and security, prevent import and unwelcome visits, and staff's need of control. Staff working in psychiatric care ought to reflect upon and articulate reasons for, and decisions about, locking or opening entrance doors, with the limitation of patients' freedom in mind.

  • 50.
    Haglund, Kristina
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Locked entrance doors at psychiatric wards: advantages and disadvantages according to voluntarily admitted patients2005In: Nordic Journal of Psychiatry, ISSN 0803-9488, E-ISSN 1502-4725, Vol. 59, no 6, p. 511-515Article in journal (Refereed)
    Abstract [en]

    Entrance doors at wards where psychiatric care is provided are sometimes locked, which is notthe case at wards where somatic care is provided. How locked entrance doors at psychiatricwards are experienced by patients has been investigated to a very limited extent. The aim was todescribe voluntarily admitted patients’ perceptions of advantages and disadvantages about beingcared for on a psychiatric ward with a locked entrance door. Audio-taped, semi-structuredinterviews were conducted with 20 patients voluntarily admitted at psychiatric wards. Contentanalysis revealed six categories of advantages and 11 categories of disadvantages. Mostadvantages were categorized as ‘‘protects patients and staff against ‘the outside’ ’’, ‘‘providespatients with a secure and efficient care’’ and ‘‘provides staff with a sense of control over thepatients’’. Most disadvantages were categorized as ‘‘makes patients feel confined’’, ‘‘makespatients feel dependent on the staff ’’ and ‘‘makes patients feel worse emotionally’’. Patientsperceive a variety of advantages and disadvantages, for themselves, their visitors and staff,connected to locked entrance doors at psychiatric wards. A locked door may make the wardappear as both a prison and a sanctuary. It is important that staff try to minimize patients’concerns connected to the locked door.

1234 1 - 50 of 153
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