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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.
    Armuand, G. M.
    et al.
    Karolinska Inst, Dept Neurobiol Care Sci & Soc, Stockholm, Sweden..
    Nilsson, J.
    Karolinska Inst, Dept Neurobiol Care Sci & Soc, Stockholm, Sweden..
    Rodriguez-Wallberg, K. A.
    Karolinska Inst, Dept Oncol Pathol, Stockholm, Sweden.;Karolinska Univ Hosp, Reprod Med, Stockholm, Sweden..
    Malmros, J.
    Karolinska Univ Hosp, Astrid Lindgren Childrens Hosp, Paediat Oncol Unit, Stockholm, Sweden.;Karolinska Inst, Dept Womens & Childrens Hlth, Stockholm, Sweden..
    Arvidson, Johan
    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), Neuropediatrics/Paediatric oncology.
    Lampic, C.
    Karolinska Inst, Dept Neurobiol Care Sci & Soc, Stockholm, Sweden..
    Wettergren, L.
    Karolinska Inst, Dept Neurobiol Care Sci & Soc, Stockholm, Sweden..
    Physicians' self-reported practice behaviour regarding fertility-related discussions in paediatric oncology in Sweden2017In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 26, no 10, p. 1684-1690Article in journal (Refereed)
    Abstract [en]

    Objective: The aim of this study was to investigate practice behaviours of Swedish physicians with regard to discussing the impact of cancer treatment on fertility with paediatric oncology patients and their parents, and to identify factors associated with such discussions.

    Methods: A cross-sectional survey study was conducted targeting all physicians in Sweden working in paediatric oncology care settings. Participants responded to a questionnaire measuring practice behaviour, attitudes, barriers, and confidence in knowledge. Multivariable logistic regression was used to determine factors associated with seldom discussing fertility.

    Results: More than half of the physicians routinely talked with their patients/parents about the treatment's potential impact on fertility (male patients: 62%; female patients: 57%; P = 0.570). Factors associated with less frequently discussing fertility with patients/parents were working at a non-university hospital (male patients: OR 11.49, CI 1.98-66.67; female patients: OR 33.18, CI 4.06-271.07), concerns that the topic would cause worry (male patients: OR 8.23, CI 1.48-45.89; female patients: OR 12.38, CI 1.90-80.70), and perceiving the parents as anxious (male patients: OR 7.18, CI 1.20-42.85; female patients: OR 11.65, CI 1.32-103.17).

    Conclusions: Based on our findings, we recommend structured training in how to communicate about fertility issues in stressful situations, which in turn might increase fertility-related discussions in paediatric oncology.

  • 3.
    Arving, Cecilia
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Assmus, Jörg
    Thormodsen, Inger
    Berntsen, Sveinung
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Early rehabilitation of cancer patients: An individual randomized stepped-care stress-management intervention.2019In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 28, no 2, p. 301-308Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To evaluate the effects of an individual stepped-care stress-management intervention for cancer patients on cancer-related stress reactions (intrusion/avoidance), and secondarily on psychological distress (anxiety/depression) and emotional reactivity (impatience/hostility).

    METHODS: Consecutively 291 cancer patients were included in a randomized controlled intervention study. Patients randomized to the intervention who did not report clinically significant stress levels (n = 72) after the first counseling session participated in only one counseling session and a follow-up (Step 1). The remaining patients (n = 66) received an additional three to eight sessions, depending on individual needs (Step 2). The intervention used techniques derived from cognitive behavioral therapy (CBT) such as daily registration of events and behaviors as well as scheduled behavioral and physical activity, along with short relaxation exercises. The intervention was completed within 26 weeks of inclusion. The Impact of Event Scale, Hospital Anxiety and Depression Scale, and Everyday Life Stress Scale were used to evaluate effects for 2 years.

    RESULTS: The linear mixed effects model analysis showed a difference between the randomization groups in favor of the intervention for avoidance and intrusion after the first 6 weeks (P = 0.001 and P = 0.003) and for emotional reactivity after 17 weeks (P = 0.007). There were no differences in psychological distress. Decreases in cancer-related stress reactions and depression were noted for the Step 2 intervention.

    CONCLUSIONS: An individual stepped-care stress-management intervention for cancer patients, performed by specially educated health professionals using techniques derived from CBT, seems beneficial for cancer patients and may therefore be a realistic complement to routine cancer care.

  • 4.
    Arving, Cecilia
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Brandberg, Yvonne
    Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden.
    Feldman, Inna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Glimelius, Bengt
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology. Dept. of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden.
    Cost-utility analysis of individual psychosocial support interventions for breast cancer patients in a randomized controlled study2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 3, p. 251-258Article in journal (Refereed)
    Abstract [en]

    Background The Distress Thermometer (DT) has been used in psycho-oncology research across the globe and has been recommended as a clinical tool to be used routinely in cancer settings to detect clinically significant distress. We sought to characterize the translation and validation of the DT in cancer patients in different countries and cultures and summarize how the translated versions function to detect clinically significant distress. Methods An electronic mail survey was sent to the members of the International Psychosocial Oncology Society Federation of Psycho-Oncology Societies and electronic searches of English language databases were conducted to identify translations of the DT and studies designed to validate these translations. Results Our efforts yielded a total of 21 non-English translations of the DT; 18 of these were validated in studies designed for that purpose. A variety of instruments were used in receiver operating characteristic curve analysis to derive an optimal cut-off score indicative of clinically significant distress. Cut-off scores varied by language, country, and clinical setting and to sample characteristics. In the majority of studies, a score of 4 maximized sensitivity and specificity relative to an established criterion. Conclusions These findings provide a broad, international perspective on the current state of psychosocial screening using the DT. Findings also demonstrate widespread awareness of the need for psychological and social support of persons diagnosed with and treated for cancer.

  • 5.
    Arving, Cecilia
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Rissanen, Ritva
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Ahlgren, Johan
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Effects of a Stepped Care Stress Management Intervention on Cancer-Related Traumatic Stress Symptoms Among Breast Cancer Patients: A Randomized Study of Group Versus Individual Setting2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no Suppl. 3, p. 171-171, article id P1-0300Article in journal (Other academic)
  • 6.
    Arving, Cecilia
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Thormodsen, Inger
    Berntsen, Sveinung
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Identifying Variables Associated With the Course of Fatigue Among Cancer Patients During Adjuvant and Curative Treatment2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, p. 176-176Article in journal (Other academic)
  • 7.
    Boman, Krister K.
    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. Karolinska Inst, Dept Womens & Childrens Hlth, Stockholm, Sweden.
    Hörnquist, Lina
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health. Karolinska Inst, Dept Womens & Childrens Hlth, Stockholm, Sweden.
    Björlin, Amelie
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health. Karolinska Inst, Dept Womens & Childrens Hlth, Stockholm, Sweden.
    Coping in the Shadow of Cancer: A Pilot Study Investigating and Evaluating a Supervised Group Intervention Model for Psychosocial Rehabilitation2018In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 27, p. 158-158Article in journal (Other academic)
  • 8. 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.

  • 9.
    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.
    Screening for Depression in Clinical Practice: An Evidence-Based Guide2011In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 20, no 4, p. 447-448Article, book review (Refereed)
  • 10.
    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.

  • 11.
    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)
  • 12.
    Duijts, Saskia
    et al.
    VU University Medical Center, Department of Public and Occupational Health, EMGO+ Institute for Health and Care Research, Amsterdam, The Netherlands; The Netherlands Cancer Institute, Division of Psychosocial Research and Epidemiology, Amsterdam, The Netherlands.
    Dalton, Susanne Oksbjerg
    Danish Cancer Society Research Center, Unit of Survivorship, Copenhagen, Denmark.
    Lundh, Marie Høyer
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences. Metropolitan University College, Department of Nursing, Copenhagen, Denmark.
    Horsboel, Trine Allerslev
    Danish Cancer Society Research Center, Unit of Survivorship, Copenhagen, Denmark.
    Johansen, Christoffer
    Danish Cancer Society Research Center, Unit of Survivorship, Copenhagen, Denmark; Rigshospitalet, Department of Oncology, Copenhagen, Denmark.
    Cancer survivors and return to work: current knowledge and future research2017In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 26, no 5, p. 715-717Article in journal (Other academic)
  • 13.
    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.

  • 14.
    Fagerlind, Hanna
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Pharmacy, Department of Pharmacy.
    Bergström, Ida
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Pharmacy, Department of Pharmacy.
    Kettis, Åsa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Pharmacy, Department of Pharmacy.
    Velikova, Galina
    Glimelius, Bengt
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Ring, Lena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Pharmacy, Department of Pharmacy.
    Communication analysis in oncology care: Performance of a combination of a content analysis system and a global scale2011In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 20, no 9, p. 992-1000Article in journal (Refereed)
    Abstract [en]

    Objective: The aim was to assess the feasibility and reliability of Velikova's Content Analysis System (VCAS) and the Medical Interaction Process System (MIPS) global scale for evaluation of communication in oncology care.

    Methods: Seventy routine physician consultations with gastro-intestinal (GI) cancer patients were audio-recorded. Two coders applied VCAS and MIPS global scale to the consultations. VCAS captures aspects of communication like symptoms, side effects, functional issues (e.g. emotional, social, physical), health-related quality of life and medical decision making. MIPS global scale measures the total impression of the consultation, e.g. patient centredness and psychosocial focus.

    Results: In total, 61 of 70 consultations were coded. The coding took twice the consultations' actual durations in minutes for VCAS. The time for coding MIPS global scale equalled the consultations length. However, the coder had then listened to the consultation twice before, coding for VCAS. Cohen's kappa for all aspects measured by VCAS varied between 0.20 and 1, mean 0.80. One category (Info on test) had a kappa of 0.20, the other categories were all above 0.60. Weighted Kappa for MIPS global scale varied between 0.25 and 0.73, mean 0.42.

    Conclusions: VCAS and MIPS global scale is a feasible combination of tools for evaluating patient-physician communication regarding content, medical decision making and global aspects of communication. VCAS showed high reliability. The MIPS global scale showed lower reliability, due to its sensitivity to the individual coders' unique values, common for all global scales. Further development of the combination of content and global instruments would be valuable.

  • 15.
    Fagerlind, Hanna
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Pharmacy, Department of Pharmacy.
    Kettis, Åsa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Pharmacy, Department of Pharmacy.
    Bergström, Ida
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Pharmacy, Department of Pharmacy.
    Nilsson, Magdalena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Pharmacy, Department of Pharmacy.
    Nauclér, Gisela
    Glimelius, Bengt
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Oncology, Radiology and Clinical Immunology.
    Ring, Lena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Pharmacy, Department of Pharmacy.
    Patient-physician communication during oncology consultations2008In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 17, no 10, p. 975-985Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The aim of this study was to characterize the content of patient-physician communication in standard oncology care. METHODS: The sample consisted of 19 patients with gastrointestinal cancer. The consultations were audio-recorded, transcribed verbatim, and analyzed according to qualitative content analysis. RESULTS: The analysis resulted in seven main categories: Disease and treatment, Healthcare planning, Everyday living, Psychological well-being, Coping with disease, Expressions of concerns and feelings, and Other aspects of communication. The main focus during the consultations was on disease and treatment. Physicians tended to concentrate on response to treatment and types and severity of side effects and how to treat them. More patient-centered subjects of psychosocial character like coping and psychological well-being were discussed only briefly, if at all. CONCLUSIONS: This study adds to the information given by the existing communication analysis systems, and hence we suggest a development of the psychosocial content categories of those systems to make them more valid.

  • 16.
    Hovén, Emma
    et al.
    Karolinska Institutet, Department of Women's and Children's Health, Childhood Cancer Research Unit, Stockholm, Sweden.
    Lannering, Birgitta
    University of Gothenburg, Department of Clinical Sciences, Pediatric Oncology, Gothenburg, Sweden.
    Gustafsson, Göran
    Karolinska Institutet, Department of Women's and Children's Health, Childhood Cancer Research Unit, Stockholm, Sweden.
    Boman, Krister K
    Karolinska Institutet, Department of Women's and Children's Health, Childhood Cancer Research Unit, Stockholm, Sweden.
    Persistent impact of illness on families of adult survivors of childhood central nervous system tumors:: a population-based cohort study2013In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 22, no 1, p. 160-167Article in journal (Refereed)
    Abstract [en]

    Objective

    This study aims to determine the long-term impact on families of adult survivors of childhood central nervous system tumors. Illness-related family consequences were studied in relation to modifying determinants.

    Methods

    In a population-based cohort of parents of 697 survivors 18 years and older, 551 parents provided data. The impact of cancer on the families was evaluated in four domains using the Impact on Family Scale (economic situation, personal burden, social life, sibling impact). The results were analyzed in relation to survivors' health assessed using the Health Utilities Index™, parent satisfaction with information about illness and treatment, and perceived health-care needs of their child.

    Results

    Despite an established mild-to-moderate impact on the group level, outcomes provided evidence of substantial cancer-related family consequences even once the child had reached adulthood. About one fifth of parents reported psychological and financial difficulties exceeding the cutoff limit for a significant impact still ≥5 years after diagnosis. A stronger total family impact was associated with poorer health of survivors (F[3,302] = 56.65, p < 0.001), and unmet informational - (F[3,231] = 14.06, p < 0.001) and health-care needs (t218 = 5.31, p < 0.001). The impact was unrelated to survivors' age at follow-up and time since diagnosis.

    Conclusions

    Adverse cancer-related consequences affect a considerable portion of families of childhood survivors of central nervous system tumor, even after reaching adulthood. The impact is aggravated by lasting sequelae and perceived shortcomings of long-term follow-up, factors that partly are avoidable. Improved clinical follow-up should particularly address illness information and long-term health-care needs to reduce the impact on families of survivors suffering from chronic health conditions.

  • 17. Isaksson, Joakim
    et al.
    Salander, Par
    Granstrom, Brith
    Laurell, Göran
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Otolaryngology and Head and Neck Surgery.
    Patients With Head and Neck Cancer Narrate the Importance of Being Included in a Helping System2013In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 22, no SI3, p. 63-63Article in journal (Other academic)
  • 18. Isaksson, Joakim
    et al.
    Salander, Par
    Lilliehorn, Sara
    Laurell, Göran
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Otolaryngology and Head and Neck Surgery.
    The Impact of Head and Neck Cancer on Living an Everyday Life 2 Years Post-treatment - A Qualitative Prospective Study2015In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 24, no S2, p. 256-257, article id P2-52Article in journal (Other academic)
  • 19.
    Isaksson, Joakim
    et al.
    Umeå Univ, Dept Social Work, Umeå, Sweden..
    Salander, Pär
    Umeå Univ, Dept Social Work, Umeå, Sweden..
    Lilliehorn, Sara
    Umeå Univ, Dept Social Work, Umeå, Sweden..
    Laurell, Göran
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Otolaryngology and Head and Neck Surgery. Uppsala Univ, Dept Surg Sci Othorinolaryngol & Head & Neck Surg, Uppsala, Sweden..
    Different transitions in returning to everyday life for patients with head and neck cancer - a qualitative prospective study2016In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 25, no SP. S3, p. 95-95Article in journal (Other academic)
  • 20.
    Kalter, J.
    et al.
    Vrije Univ Amsterdam, Med Ctr, Amsterdam Publ Hlth Res Inst, Dept Epidemiol & Biostat, Amsterdam, Netherlands..
    Verdonck-de Leeuw, I. M.
    Vrije Univ Amsterdam, Dept Clin Psychol, Amsterdam, Netherlands.;Vrije Univ Amsterdam, Med Ctr, Amsterdam Publ Hlth Res Inst, Dept Otolaryngol Head & Neck Surg, Amsterdam, Netherlands.;Vrije Univ Amsterdam, Med Ctr, Canc Ctr Amsterdam, Amsterdam, Netherlands..
    Sweegers, M. G.
    Vrije Univ Amsterdam, Med Ctr, Amsterdam Publ Hlth Res Inst, Dept Epidemiol & Biostat, Amsterdam, Netherlands..
    Aaronson, N. K.
    Netherlands Canc Inst, Div Psychosocial Res & Epidemiol, Amsterdam, Netherlands..
    Jacobsen, P. B.
    NCI, Div Canc Control & Populat Sci, Bethesda, MD 20892 USA..
    Newton, R. U.
    Edith Cowan Univ, Exercise Med Res Inst, Joondalup, WA, Australia..
    Courneya, K. S.
    Univ Alberta, Fac Kinesiol Sport & Recreat, Edmonton, AB, Canada..
    Aitken, J. F.
    Griffith Univ, Menzies Hlth Inst Queensland, Southport, Qld, Australia.;Canc Council Queensland, Brisbane, Qld, Australia.;Univ Southern Queensland, Inst Resilient Reg, Brisbane, Qld, Australia..
    Armes, J.
    Univ Surrey, Fac Hlth & Med Sci, Guildford, Surrey, England..
    Arving, Cecilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology.
    Boersma, L. J.
    Maastricht Univ, Med Ctr, MAASTRO Clin, Dept Radiat Oncol, Maastricht, Netherlands.;Maastricht Univ, Med Ctr, GROW Sch Oncol & Dev Biol, Maastricht, Netherlands..
    Braamse, A. M. J.
    Acad Med Ctr, Dept Med Psychol, Amsterdam, Netherlands..
    Brandberg, Y.
    Karolinska Inst, Dept Oncol Pathol, Stockholm, Sweden..
    Chambers, S. K.
    Griffith Univ, Menzies Hlth Inst Queensland, Southport, Qld, Australia.;Canc Council Queensland, Brisbane, Qld, Australia.;Prostate Canc Fdn Australia, Sydney, NSW, Australia..
    Dekker, J.
    Vrije Univ Amsterdam, Med Ctr, Dept Rehabil Med, Amsterdam, Netherlands.;Vrije Univ Amsterdam, Med Ctr, Dept Psychiat, Amsterdam, Netherlands..
    Ell, K.
    Univ Southern Calif, Dept Adults & Hlth Aging, Los Angeles, CA USA..
    Ferguson, R. J.
    Univ Pittsburgh, Canc Inst, Div Hematol Oncol, Pittsburgh, PA USA..
    Gielissen, M. F. M.
    Acad Med Ctr, Dept Med Psychol, Amsterdam, Netherlands..
    Glimelius, Bengt
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Goedendorp, M. M.
    Univ Groningen, Univ Med Ctr Groningen, Dept Hlth Psychol, Groningen, Netherlands..
    Graves, K. D.
    Georgetown Univ, Lombardi Comprehens Canc Ctr, Washington, DC USA..
    Heiney, S. P.
    Univ South Carolina, Coll Nursing, Columbia, SC USA..
    Horne, R.
    UCL, UCL Sch Pharm, London, England..
    Hunter, M. S.
    Kings Coll London, Inst Psychiat Psychol & Neurosci, London, England..
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Kimman, M. L.
    Maastricht Univ, Med Ctr, Dept Clin Epidemiol & Med Technol Assessment, Maastricht, Netherlands..
    Knoop, H.
    Acad Med Ctr, Dept Med Psychol, Amsterdam, Netherlands..
    Meneses, K.
    Univ Alabama Birmingham, Sch Nursing, Birmingham, AL USA..
    Northouse, L. L.
    Univ Michigan, Sch Nursing, Ann Arbor, MI 48109 USA..
    Oldenburg, H. S.
    Antoni van Leeuwenhoek Hosp, Netherlands Canc Inst, Dept Surg Oncol, Amsterdam, Netherlands..
    Prins, J. B.
    Radboud Univ Nijmegen, Med Ctr, Dept Med Psychol, Nijmegen, Netherlands..
    Savard, J.
    Univ Laval, Sch Psychol, Quebec City, PQ, Canada.;Laval Univ, Canc Res Ctr, Quebec City, PQ, Canada..
    van Beurden, M.
    Antoni van Leeuwenhoek Hosp, Netherlands Canc Inst, Dept Gynecol, Amsterdam, Netherlands..
    van den Berg, S. W.
    Radboud Univ Nijmegen, Med Ctr, Dept Med Psychol, Nijmegen, Netherlands..
    Brug, J.
    Vrije Univ Amsterdam, Med Ctr, Amsterdam Publ Hlth Res Inst, Dept Epidemiol & Biostat, Amsterdam, Netherlands.;Univ Amsterdam, Amsterdam Sch Commun Res ASCoR, Amsterdam, Netherlands..
    Buffart, L. M.
    Vrije Univ Amsterdam, Med Ctr, Amsterdam Publ Hlth Res Inst, Dept Epidemiol & Biostat, Amsterdam, Netherlands.;Edith Cowan Univ, Exercise Med Res Inst, Joondalup, WA, Australia.;Vrije Univ Amsterdam, Med Ctr, Canc Ctr Amsterdam, Dept Med Oncol, Amsterdam, Netherlands..
    Effects and moderators of psychosocial interventions on quality of life, and emotional and social function in patients with cancer: An individual patient data meta-analysis of 22 RCTs2018In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 27, no 4, p. 1150-1161Article, review/survey (Refereed)
    Abstract [en]

    Objective: This individual patient data (IPD) meta-analysis aimed to evaluate the effects of psychosocial interventions (PSI) on quality of life (QoL), emotional function (EF), and social function (SF) in patients with cancer, and to study moderator effects of demographic, clinical, personal, and intervention-related characteristics. Methods: Relevant studies were identified via literature searches in 4 databases. We pooled IPD from 22 (n = 4217) of 61 eligible randomized controlled trials. Linear mixed-effect model analyses were used to study intervention effects on the post-intervention values of QoL, EF, and SF (z-scores), adjusting for baseline values, age, and cancer type. We studied moderator effects by testing interactions with the intervention for demographic, clinical, personal, and intervention-related characteristics, and conducted subsequent stratified analyses for significant moderator variables.Results: PSI significantly improved QoL (=0.14,95%CI=0.06;0.21), EF ( beta = 0.13,95%CI = 0.05;0.20), and SF (beta = 0.10,95%CI = 0.03;0.18). Significant differences in effects of different types of PSI were found, with largest effects of psychotherapy. The effects of coping skills training were moderated by age, treatment type, and targeted interventions. Effects of psychotherapy on EF may be moderated by cancer type, but these analyses were based on 2 randomized controlled trials with small sample sizes of some cancer types. Conclusions: PSI significantly improved QoL, EF, and SF, with small overall effects. However, the effects differed by several demographic, clinical, personal, and intervention-related characteristics. Our study highlights the beneficial effects of coping skills training in patients treated with chemotherapy, the importance of targeted interventions, and the need of developing interventions tailored to the specific needs of elderly patients.

  • 21.
    Lehmann, Vicky
    et al.
    Department of Health Sciences, Health Psychology Research Section, University of Groningen, University Medical Center Groningen (UMCG), The Netherlands.
    Grönqvist, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Engvall, Gunn
    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.
    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.
    Tuinman, Marrit A
    Department of Health Sciences, Health Psychology Research Section, University of Groningen, University Medical Center Groningen (UMCG), The Netherlands.
    Hagedoorn, Mariët
    Department of Health Sciences, Health Psychology Research Section, University of Groningen, University Medical Center Groningen (UMCG), The Netherlands.
    Sanderman, Robbert
    Department of Health Sciences, Health Psychology Research Section, University of Groningen, University Medical Center Groningen (UMCG), The Netherlands.
    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.
    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.
    Negative and positive consequences of adolescent cancer 10 years after diagnosis: an interview-based longitudinal study in Sweden2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 11, p. 1229-1235Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE:

    The aim of this study was to provide insight into survivor-reported negative and positive consequences of cancer during adolescence 10 years after diagnosis and compare these with consequences reported 3 and 4 years after diagnosis.

    METHODS:

    Three, 4, and 10 years after diagnosis, survivors of adolescent cancer were interviewed about negative and positive consequences due to their cancer experience. Manifest content analysis was used to identify categories of reported consequences. Categories of consequences 10 years after diagnosis were compared with consequences reported 3 and 4 years after diagnosis.

    RESULTS:

    Seven categories of negative consequences were identified: bodily concerns, existential thoughts about loss and life (new at 10 years), psychological problems, difficulties interacting with others, health worries (new), fertility concerns (new), and frustrations about health care (new); and six categories of positive consequences: positive view of life, positive view of self, compassion for others (new), close relationships, gained knowledge about disease and health care, and financial gains. Consistent with previous time points, bodily concerns were reported most often. The majority of survivors (n = 22) reported both negative and positive consequences of their former disease. Few reported only negative (n = 2) or only positive consequences (n = 4).

    CONCLUSIONS:

    Ten years after diagnosis, most survivors reported both negative and positive consequences. New themes, relevant to young adulthood and long-term survival, were identified. Health care professionals treating young adult survivors may anticipate and address problems regarding physical health, fertility, and health care but may also reinforce positive affect by addressing survivors' positive views of life, sense of self, and close relationships.

  • 22.
    Ljungman, Lisa
    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.
    Cernvall, Martin
    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.
    Ghaderi, Ata
    Karolinska Inst, Solna, Sweden..
    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 Univ, Uppsala, Sweden..
    Ljotsson, Brjann
    Karolinska Inst, Solna, Sweden..
    A Cognitive Behavioural Conceptualization of Psychological Distress in Parents of Children Previously Treated for Cancer2016In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 25, no SP. S3, p. 65-65Article in journal (Other academic)
  • 23.
    Ljungman, Lisa
    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, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    Cernvall, Martin
    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.
    Does time heal all wounds? A longitudinal study of the development of posttraumatic stress symptoms in parents of survivors of childhood cancer and bereaved parents2015In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 24, no 12, p. 1792-1798Article in journal (Refereed)
    Abstract [en]

    Background: A lack of longitudinal studies has hampered the understanding of the development of posttraumatic stress symptoms (PTSS) in parents of children diagnosed with cancer. This study examines level of PTSS and prevalence of posttraumatic stress disorder (PTSD) from shortly after diagnosis up to 5 years after end of treatment or child’s death, in mothers and fathers. Methods: A design with seven assessments (T1–T7) was used. T1–T3 were administered during treatment and T4–T7 after end of treatment or child’s death. Parents (N = 259 at T1; n = 169 at T7) completed the PTSD Checklist Civilian Version. Latent growth curve modeling was used to analyze the development of PTSS. Results: A consistent decline in PTSS occurred during the first months after diagnosis; thereafter the decline abated, and from 3 months after end of treatment only minimal decline occurred. Five years after end of treatment, 19% of mothers and 8% of fathers of survivors reported partial PTSD. Among bereaved parents, corresponding figures were 20% for mothers and 35% for fathers, 5 years after the child’s death. Conclusions: From 3 months after end of treatment the level of PTSS is stable. Mothers and bereaved parents are at particular risk for PTSD. The results are the first to describe the development of PTSS in parents of children diagnosed with cancer, illustrate that end of treatment is a period of vulnerability, and that a subgroup reports PTSD 5 years after end of treatment or child’s death.

  • 24.
    Lundh, Marie Høyer
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Lampic, Claudia
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Ahlgren, Johan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centre for Research and Development, Gävleborg. Department of Oncology, Gävle Hospital, Gävle, Sweden.
    Bergkvist, Leif
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centre for Clinical Research, County of Västmanland.
    Lambe, Mats
    Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden.
    Berglund, Anders
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Changes in health-related quality of life by occupational status among women diagnosed with breast cancer: a population-based cohort study2013In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 22, no 10, p. 2321-2331Article in journal (Refereed)
    Abstract [en]

    Objective:

    To investigate whether longitudinal changes in health-related quality of life (HRQoL) among breast cancer patients vary by prediagnosis occupational status or postdiagnosis changes in working time.

    Methods:

    We identified 1573 patients in the Breast Cancer Quality Register of Central Sweden and asked them to participate in a longitudinal questionnaire study. A total of n = 841 women completed three questionnaires within a mean time of 4, 16, and 38 months postdiagnosis. Generalized estimating equation models were used to examine changes in European Organization for Research and Treatment of Cancer Quality of Life Questionnaire and the Breast Cancer-Specific Quality of Life Questionnaire subscales stratified by prediagnosis occupational status and postdiagnosis changes in working time.

    Results:

    Over time, the proportion of employed women reporting good functioning increased more, and the proportion reporting a high level of symptoms decreased more compared with women on sick leave/disability pension and retirement pensioners (p < 0.001). The latter two also showed a worsening in several subscales (p < 0.05). Among employed women, more consistent improvements in role and social functioning were observed among those with an increase/no change in working time than among those who had decreased it or stopped working (p < 0.05). A decrease in the proportion reporting pain was observed among women with an increase/no change in working time compared with women with decreased working time, among whom the proportion reporting pain increased (p = 0.008).

    Conclusions:

    Being employed prediagnosis and resuming work to the same extent as prior to the breast cancer diagnosis are associated with consistent improvements in HRQoL. These results highlight the importance of interventions to improve HRQoL and policies to support return to work following diagnosis.

  • 25. Lövgren, Malin
    et al.
    Jalmsell, Li
    Eilegård, Alexandra
    Steineck, Gunnar
    Kreicbergs, Ulrika
    Siblings’ experiences of the brother’s or sister’s cancer death: a nationwide follow-up 2-9 years later In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611Article in journal (Refereed)
  • 26.
    Lövgren, Malin
    et al.
    Karolinska Inst, Childhood Canc Res Unit, Dept Womens & Childrens Hlth, S-17176 Stockholm, Sweden.;Dalarna Univ, Sch Educ Hlth & Soc, Falun, Sweden..
    Jalmsell, Li
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences. Visby Lasarett, Oncol Unit, Visby, Sweden..
    Wallin, Alexandra Eilegard
    Dalarna Univ, Sch Educ Hlth & Soc, Falun, Sweden..
    Steineck, Gunnar
    Karolinska Univ Hosp, Dept Oncol Pathol, Stockholm, Sweden.;Sahlgrens Acad, Dept Oncol, Gothenburg, Sweden..
    Kreicbergs, Ulrika
    Karolinska Inst, Childhood Canc Res Unit, Dept Womens & Childrens Hlth, S-17176 Stockholm, Sweden.;Ersta Skondal Univ Coll, Palliat Res Ctr, Stockholm, Sweden..
    Siblings' experiences of their brother's or sister's cancer death: a nationwide follow-up 2-9years later2016In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 25, no 4, p. 435-440Article in journal (Refereed)
    Abstract [en]

    ObjectiveThe aim of this study was to examine siblings' experiences of their brother's or sister's cancer death and if these experiences influenced levels of anxiety 2-9years later. MethodsThis nationwide survey was conducted in Sweden in 2009. All siblings who had a brother/sister who was diagnosed with cancer before the age of 17years and who died before the age of 25years during 2000-2007 were invited. Of those, 174 siblings participated (participation rate: 73%). Mixed data from the survey about the siblings' experiences of death were included as well as data from the Hospital Anxiety and Depression Scale. To examine the experiences, descriptive statistics and content analysis were used. Mann-Whitney U-test was conducted to investigate if the experiences influenced anxiety 2-9years later. ResultsThe siblings reported poor knowledge and experienced a lack of communication about their brother's/sister's death, for example, about the time frame, bodily changes near death, and about their own experiences. Siblings who reported that no one talked with them about what to expect when their brother/sister was going to die reported higher levels of anxiety 2-9years after the loss. Seventy percent reported that they witnessed their brother/sister suffering in the last hours in life. Many of those who were not present during the illness period and at the time of death expressed regret. ConclusionIt is important to prepare siblings for their brother's/sister's illness and death as it may decrease anxiety and regrets later on.

  • 27.
    Mattsson, Elisabet
    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.
    Ringnér, Anders
    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.
    von Essén, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Positive and negative consequences with regard to cancer during adolescence: Experiences two years after diagnosis2007In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 16, no 11, p. 1003-1009Article in journal (Refereed)
    Abstract [en]

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

  • 28. Norberg, Annika Lindahl
    et al.
    Boman, Krister K
    Mothers and fathers of children with cancer: loss of control during treatment and posttraumatic stress at later follow-up2013In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 22, no 2, p. 324-329Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    A child's cancer can lead to changes in parental role functioning, including loss of control. We studied the extent to which parental perceived loss of control during a child's cancer treatment predicted posttraumatic stress symptoms (PTSS) after completion of treatment.

    METHOD AND PARTICIPANTS:

    The sample of this longitudinal study included 62 parents (36 mothers and 26 fathers) of children currently in treatment for malignant disease (T1) and after completion of treatment (T2). Loss of control was assessed at T1 using a self-report measure, that is the loss of control module of the Parental Psychosocial Distress-Cancer questionnaire. PTSS were assessed at T2 using the Impact of Event Scale-Revised. Main analyses were carried out for mothers and fathers separately.

    RESULTS:

    The majority of the parents, 55% (n = 34), reported loss of control on more than half of the assessed domains. Only 5% (n = 3) reported no loss of control whatsoever. At T2, some degree of PTSS was reported by 89% (n = 55). These outcomes were similar for mothers and fathers. Loss of control at T1 predicted stronger PTSS at T2 primarily among mothers.

    CONCLUSION:

    The experience of loss of control during cancer treatment is a salient risk factor for later PTSS in mothers. The situational threat to the regular parental role is discussed as an explanation to this observation. Interventions should address informational needs, parent participation in care, and professional support to maintain a sense of control and functioning in their parental role.

  • 29.
    Norberg, Annika Lindahl
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Forinder, Ulla
    Co-morbidity of Psychological Reactions Among Parents After Paediatric Stem Cell Transplantation2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 3, p. 265-266Article in journal (Other academic)
  • 30.
    Norberg, Annika Lindahl
    et al.
    Karolinska institutet, inst f kvinnors och barns hälsa.
    Lindblad, Frank
    Boman, Krister K
    Support-seeking, perceived support, and anxiety in mothers and fathers after children's cancer treatment.2006In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 15, no 4, p. 335-43Article in journal (Refereed)
    Abstract [en]

    The objective was to examine the relationships between anxiety, the seeking of social support as a coping strategy, and perceived social support among mothers (n=103) and fathers (n=81) of children with successfully completed treatment for cancer. Assessments were done using self-report instruments. The mediating effect of perceived support on the relationship between social support-seeking and anxiety was evaluated through path analysis, and comparisons were done in order to evaluate effects of gender. For mothers and fathers alike, a positive relationship of moderate strength between support-seeking and perceived support was found. Anxiety was negatively related to support-seeking (mothers r=-0.22, p=0.025; fathers r=-0.21, p=0.063) as well as perceived support (mothers r=-0.55, p<0.001; fathers r=-0.41, p<0.001), although the relationship for support-seeking was weak. The path analysis showed that perceived support only to a minor extent could strengthen this association. The significance of support-seeking and perceived support was stronger for mothers than for fathers, as regards their association with anxiety. However, the patterns of interrelations were similar for mothers and fathers. In conclusion, parents' subjectively perceived support appears to be more important for anxiety regulation than their support-seeking coping. In clinical practice, individual variation should be acknowledged, and presumptions of general gender differences avoided.

  • 31.
    Nordin, Karin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Oncology, Radiology and Clinical Immunology, Oncology.
    Berglund, Gunilla
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Terje, Ingrid
    Glimelius, Bengt
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Oncology, Radiology and Clinical Immunology, Oncology.
    The Mental Adjustment to Cancer Scale: a psychometric analysis and the concept of coping1999In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 8, no 3, p. 250-259Article in journal (Refereed)
    Abstract [en]

    A psychometric analysis of the Mental Adjustment to Cancer (MAC) scale was performed in a heterogeneous Swedish sample of cancer patients (n = 868). The homogeneity of the original subscales proved to be satisfactory (alpha coefficients 0.61-0.81). The sample was randomly split into two subgroups, and a factor analysis was carried out in one of them using the LISREL 8.20 procedure. This yielded four factors called 'Hopeless', 'Positive', 'Anxious' and 'Avoidant' including 28 of the 40 original items (alpha coefficients 0.58-0.81). The novel factor structure was cross-validated and confirmed in the second subgroup. In contrast to the original scale (one item), 'Avoidance', was indexed by three items. The distinction between mental adjustment and coping is discussed. It is concluded that both versions of the MAC scale are measures of mental adjustment including emotional reactions as well as coping.

  • 32.
    Nordin, Karin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Oncology, Radiology and Clinical Immunology, Oncology.
    Glimelius, Bengt
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Oncology, Radiology and Clinical Immunology, Oncology.
    Reactions to gastrointestinal cancer: variation in mental adjustment and emotional well-being over time in patients with different prognoses1998In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 7, no 5, p. 413-423Article in journal (Refereed)
    Abstract [en]

    The relation between mental adjustment, often referred to as coping strategies, and emotional well-being and their changes over time were studied in 139 consecutive, newly diagnosed gastrointestinal cancer patients. Sixty-six patients were potentially cured since all known disease could be removed by surgery, whereas in 73 patients, this was not possible. A more confronting reaction to the diagnosis was associated with better emotional well-being whereas avoidance of reminders of, and intrusive thoughts about the disease were associated with more distress. In agreement with other studies, we found that the coping strategy 'Fighting Spirit' was associated with better emotional well-being while the reverse was true for the strategies 'Hopeless/Helplessness' and 'Anxious Preoccupation'. There were only minor changes over time in the average values of emotional well-being and coping strategies, particularly among patients who at diagnosis were considered incurable. In analyses of each individual's changes of predominant coping style and whether they were categorized as cases/doubtful cases on the HAD anxiety and depression scale, marked changes were, however, seen in several patients. The analyses of mean values give an impression of stability, whereas analyses of the number of patients with a specific predominant coping strategy and how they change, give another. The question of whether coping strategies and emotional well-being change through the course of the disease has no simple and obvious answer. Whether some of the investigated coping strategies should be conceptualized in terms of coping, or whether they are an outcome of the coping efforts, are discussed.

  • 33.
    Pohlkamp, Lilian
    et al.
    Ersta Skondal Bracke Univ Coll, Palliat Res Ctr, Dept Hlth Care Sci, Stockholm, Sweden.
    Kreicbergs, Ulrika
    Ersta Skondal Bracke Univ Coll, Palliat Res Ctr, Dept Hlth Care Sci, Stockholm, Sweden;Karolinska Inst, Dept Womens & Childrens Hlth, Stockholm, Sweden.
    Sveen, Josefin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Ekselius: Psychiatry. Ersta Skondal Bracke Univ Coll, Palliat Res Ctr, Dept Hlth Care Sci, Stockholm, Sweden.
    Bereaved mothers' and fathers' prolonged grief and psychological health 1 to 5 years after loss-A nationwide study2019In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 28, no 7, p. 1530-1536Article in journal (Refereed)
    Abstract [en]

    Objective To assess differences in prolonged grief, depression, posttraumatic stress, and sleep disturbances in bereaved parents across years since loss (1-5 years) and by gender and to assess potential interactive effects of time since loss and gender on bereavement outcomes. Methods This study examined symptom levels of prolonged grief disorder, depression, posttraumatic stress, and insomnia in bereaved parents. A sample, including 133 mothers and 92 fathers who had lost a child to cancer 1 to 5 years previously, subdivided to five subsamples, one for each year since loss. Analysis of variance (ANOVA) was used to assess differences in symptom levels, related to years since loss, and gender. Results Regardless of how many years had passed since the loss, symptom levels of prolonged grief, depression, posttraumatic stress symptoms, and insomnia were elevated in all subsamples. Mothers showed higher symptom levels of prolonged grief, depression, and posttraumatic stress than fathers. However, no significant interaction effects were found between years since loss and gender on any of the symptom levels. Conclusions Cancer-bereaved mothers and fathers are vulnerable to prolonged grief and psychological symptoms up to 5 years after the death of their child. Findings highlight that bereaved parents may need long-term support, and the results deserve further attention in research and clinical care.

  • 34.
    Pöder, Ulrika
    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.
    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.
    Posttraumatic stress disorder among parents of children on cancer treatment: a longitudinal study2008In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 17, no 5, p. 430-437Article in journal (Refereed)
    Abstract [en]

    The main aim of this study was to investigate the occurrence of cancer-related posttraumatic stress disorder (PTSD) among parents of children on cancer treatment. A longitudinal design with assessments at one week (T1), two (T2), and four (T3) months after the child's diagnosis was used. Two hundred and fourteen parents (107 mothers, 107 fathers) participated at T1-T3. The PTSD Checklist Civilian (PCL-C), a self-report screening instrument for PTSD, was answered by parents over the telephone. According to the PCL-C symptom criteria method 33%, more mothers than fathers, score as potential cases of acute stress disorder (ASD) at T1, whereas 28% as potential cases of PTSD at T2 and 22% at T3. The levels of acute- and posttraumatic stress symptoms show a linear, descending pattern, and mothers report higher levels than fathers. Half of the parents who score as potential cases of ASD a week after the child's diagnosis score as potential cases of PTSD four months later. The findings illustrate that a group of parents of children with cancer experience serious psychological distress related to their child's disease. A traumatic stress perspective on childhood cancer should be applied to paediatric oncology care and appropriate psychosocial interventions should be offered to parents when needed.

  • 35.
    Rissanen, Ritva
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Arving, Cecilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Ahlgren, Johan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centre for Research and Development, Gävleborg.
    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.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Cognitive processing in relation to psychological distress in women with breast cancer: a theoretical approach2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 2, p. 222-228Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE:

    To evaluable a cognitive procession model developed by Creamer and colleagues, this study examined the longitudinal relationship between intrusion and psychological distress, via avoidance, in women with breast cancer.

    METHODS:

    Participants included 189 patients who were newly diagnosed with breast cancer. The longitudinal association between intrusion, avoidance and psychological distress and the mediating role of avoidance between intrusion and psychological distress were examined. Intrusion was measured at inclusion (T1), avoidance at 3 months post-inclusion (T2) and psychological distress at 12 months post-inclusion (T3).

    RESULTS:

    Results suggested that avoidance at T2 did not mediate the relationship between intrusions at T1 and psychological distress at T3.

    CONCLUSION:

    The results did not provide support for Creamer's model in an early-stage breast cancer population, which suggests that early-stage breast cancer patient's process trauma differently from late-stage cancer patients. Therefore, it might be suggested that early-stage and late-stage cancer patients require different types of support and treatment for the distress experienced.

  • 36.
    Rissanen, Ritva
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Ahlgren, Johan
    Department of Oncology, University Hospital of Örebro, Sweden.
    Arving, Cecilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    A stepped care stress management intervention on cancer-related traumatic stress symptoms among breast cancer patients: A randomized study in group vs. individual setting2015In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 24, no 9, p. 1028-1035Article in journal (Refereed)
    Abstract [en]

    Objective

    To evaluate the mode of delivery of a stress management intervention, in a group or individual setting, on self-reported cancer-related traumatic stress symptoms. A secondary aim was to evaluate a stepped care approach.

    Methods

    All study participants (n  = 425), who were female, newly diagnosed with breast cancer and receiving standard oncological care were offered Step I of the stepped care approach, a stress management education (SME). Thereafter, they were screened for cancer-related traumatic stress symptoms, and, if present (n = 304), were invited to join Step II, a more intense intervention, derived from cognitive behavioral therapy, to which they were randomized to either a group (n = 77) or individual (n  = 78) setting. To assess cancer-related traumatic stress symptoms, participants completed the Impact of Event Scale and the Hospital Anxiety and Depression Scale at the time of inclusion, three-months post-inclusion and approximately 12-months post-inclusion.

    Results

    The SME did not significantly decrease any of the cancer-related traumatic stress symptoms. No statistically significant differences were found between the group and the individual setting interventions. However, only 54% of the participants attended the group setting compared to 91% for the individual setting.

    Conclusion

    The mode of delivery had no effect on the cancer-related traumatic stress symptoms; however, the individual setting was preferred. In future studies, a preference-based RCT design will be recommended for evaluating the different treatment effects.

  • 37. Riva, Roberto
    et al.
    Forinder, Ulla
    Arvidson, Johan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    Mellgren, Karin
    Toporski, Jacek
    Winiarski, Jacek
    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. Karolinska Institutet.
    Patterns of psychological responses in parents of children that underwent stem cell transplantation2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 11, p. 1307-1313Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Hematopoietic stem cell transplantation (HSCT) is curative in several life-threatening pediatric diseases but may affect children and their families inducing depression, anxiety, burnout symptoms, and post-traumatic stress symptoms, as well as post-traumatic growth (PTG). The aim of this study was to investigate the co-occurrence of different aspects of such responses in parents of children that had undergone HSCT.

    METHODS: Questionnaires were completed by 260 parents (146 mothers and 114 fathers) 11-198 months after HSCT: the Hospital Anxiety and Depression Scale, the Shirom-Melamed Burnout Questionnaire, the post-traumatic stress disorders checklist, civilian version, and the PTG inventory. Additional variables were also investigated: perceived support, time elapsed since HSCT, job stress, partner-relationship satisfaction, trauma appraisal, and the child's health problems. A hierarchical cluster analysis and a k-means cluster analysis were used to identify patterns of psychological responses.

    RESULTS: Four clusters of parents with different psychological responses were identified. One cluster (n = 40) significantly differed from the other groups and reported levels of depression, anxiety, burnout symptoms, and post-traumatic stress symptoms above the cut-off. In contrast, another cluster (n = 66) reported higher levels of PTG than the other groups did.

    CONCLUSIONS: This study shows a subgroup of parents maintaining high levels of several aspects of distress years after HSCT. Differences between clusters might be explained by differences in perceived support, the child's health problems, job stress, and partner-relationship satisfaction.

  • 38. Salander, Par
    et al.
    Isaksson, Joakim
    Granstrom, Brith
    Laurell, Göran
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Otolaryngology and Head and Neck Surgery.
    How Patients Make use of a Specialist Nurse Function in Head and Neck Cancer: An Empirical Study2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 3, p. 159-159Article in journal (Other academic)
  • 39.
    Sveen, Josefin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, University Hospital.
    Eilegard, Alexandra
    Steineck, Gunnar
    Kreicbergs, Ulrika
    They still grieve - a nationwide follow-up of young adults 2-9 years after losing a sibling to cancer2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 6, p. 658-664Article in journal (Refereed)
    Abstract [en]

    Objectives: The aims of this study were to assess the prevalence of unresolved grief in bereaved young adult siblings and examine possible contributing factors. Methods: The study was a Swedish population-based study of young adults who had lost a brother or sister to cancer, 2-9 years earlier. Of 240 eligible siblings, 174 (73%) completed a study-specific questionnaire. This study focused on whether the respondents had worked through their grief over the sibling's death and to what extent. Results: A majority (54%) of siblings stated that they had worked through their grief either not at all' or to some extent' at the time of investigation. In multiple regression analyses with unresolved grief as the dependent variable, 21% of the variance was explained by lack of social support and shorter time since loss. Conclusion: The majority of bereaved young adults had not worked through their grief over the sibling's death. A small group of siblings reported that they had not worked through their grief at all, which may be an indicator of prolonged grief. Lack of social support and more recent loss were associated with not having worked through the grief over the sibling's death.

  • 40.
    Wasteson, Elisabet
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Hoffman, Katarina
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Glimelius, Bengt
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Oncology, Radiology and Clinical Immunology.
    Sjödén, Per-Olow
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Daily assessment of coping in patients with gastrointestinal cancer2002In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 11, no 1, p. 1-11Article in journal (Refereed)
    Abstract [en]

    Ninety-five patients with gastrointestinal (GI) cancer participated in a study concerning stressful events, coping and emotional well-being. Participants were either potentially cured (n=62) after radical surgery or non-cured (n=33). For a period of 1 week, close to being informed about their diagnosis, they performed daily recordings of stressful events, the distress occasioned by these events and their perception of control over them, coping, worry and happiness/sadness. Anxiety and depression were assessed by a single retrospective assessment at the end of the week (Hospital Anxiety and Depression (HAD) scale). The most commonly recorded stressful events were 'Somatic aspects' and 'Everyday concerns'. 'Somatic aspects', 'Social aspects' and 'Other consequences of the disease' were rated as most bothersome. Patients perceived that they had the highest degree of control over 'Returning home after hospital stay', whereas 'Contact with the medical services' was assigned low control. The most commonly used coping strategies were 'Acceptance' and 'Relaxation', and the least used was 'Religion'. Significant positive correlations between the occurrence of stressful events and the use of coping strategies were demonstrated between 'Somatic Aspects' and 'Acceptance'/'Direct Action', and between 'Social Aspects' and 'Seeking Social Support'. Daily assessment of stress-coping relationships represents a promising approach to the understanding of adaptation among cancer patients.

  • 41.
    Wettergren, Lena
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Sprangers, M.
    Björkholm, M.
    Langius-Eklöf, A.
    Quality of life before and one year following stem cell transplantation using an individualized and a standardized instrument2008In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 17, no 4, p. 338-346Article in journal (Refereed)
    Abstract [en]

    Objective: The aim was to prospectively measure quality of fife in patients with malignant blood disorders following stem cell transplantation (SCT) using an individualized and a standardized measure. Methods: Twenty-two consecutive patients were assessed before and one year following SCT, using a generic and disease-related version of the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW) and the EORTC QLQ-C30. Results of the QLQ-C30 were compared with Swedish norm values. Results: A majority of the patients reported concerns related to health before as well as one year after SCT, recorded by both instruments. Mean scores produced by the SEIQoL-DW, and four scales of the EORTC QLQ-C30, showed a change over time, indicating improved quality of life one year after SCT. In comparison with Swedish norm values for the EORTC QLQ-C30, SCT recipients reported a worse functioning. Conclusions: In addition to well-known disease and treatment-related problems, areas not typically included in standardized instruments were nominated in the disease-related SEIQoL-DW. Such areas included positive aspects, e.g. a changed view of fife and oneself. The results support the use of the generic and disease-related SEIQoL-DW to achieve a comprehensive picture of patient's clinical situation under treatment or when recovering from illness.

  • 42.
    Winterling, Jeanette
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Glimelius, Bengt
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Oncology, Radiology and Clinical Immunology.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    The importance of expectations on the recovery period after cancer treatment2008In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 17, no 2, p. 190-198Article in journal (Refereed)
    Abstract [en]

    The purpose was to study expectations concerning recovery-related changes in life, e.g. beliefs regarding future adjustment back to 'normal' life after curative cancer treatment, whether these expectations were met and their importance for both patients' and their spouses' quality of life and psychological distress. Sixty-two patients and 42 spouses took part in the study. Data on recovery-related expectations, measured using a study-specific questionnaire (RRE), on quality of life using EORTC-QLQ C-30 and on psychological distress using HADS, were collected directly after completion of treatment, four and 16 months later. Optimism was measured using LOT at the last follow-up. The results demonstrate that patients generally had higher recovery-related expectations than did their spouses, and their expectations were also fulfilled to a lesser degree at both follow-ups. However, the expectations, or whether these were met, were generally not associated with their quality of life or psychological distress. The few associations that were made indicated that fulfilled expectations meant higher quality of life and/or less distress. The participants' optimism was associated with both their quality of life and psychological distress. It is concluded that optimism influenced the participants' quality of life and psychological distress to a higher degree than did their recovery-related expectations.

  • 43.
    Östlund, Ulrika
    et al.
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden.
    Wennman-Larsen, Agneta
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden.
    Persson, Carina
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden.
    Gustavsson, Petter
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden.
    Wengström, Yvonne
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden.
    Mental health in significant others of patients dying from lung cancer2010In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 19, no 1, p. 29-37Article in journal (Refereed)
    Abstract [en]

    Objective: Definitions and measures of significant others' mental health vary, but stress processes have been associated with caregiver outcomes of this kind. Thus, various mental health outcomes probably appear, either as specific responses to particular types of caregiver stressors, or as part of a general response resulting from an accumulation of various stressors. The present study explores the occurrence of symptoms of strain with regard to depression, exhaustion, and emotional well-being in significant others of patients dying from lung cancer, and how these symptoms coexist. Methods: Measures used were the Montgomery Asberg Depression Rating Scale, the OLdenburg Burnout Inventory, and the Swedish Health-Related Quality of Life Survey. Data from 84 significant others of patients dying from lung cancer were collected at a time-point during the last 4 months before the patients died and subsequently analysed. The occurrence of symptoms of strain was established by creating cut-off scores from the general population. To explore how the different symptoms coexisted, hierarchical agglomerative cluster analyses were conducted using Ward's method. Results: Approximately 40% of the significant others reported symptoms of strain for each of the three outcomes, and a coexistence was found since the significant others clustered as subgroups, ranging from 'high on all scales' to 'low on all scales'. Conclusion: A considerable proportion of the significant others were thus negatively affected in terms of mental health. We conclude that being a significant other of a person dying from lung cancer most likely results in a general response to this major life event. Copyright (C) 2009 John Wiley & Sons, Ltd.

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