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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.
    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)
  • 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. 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)
  • 3.
    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)
  • 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.
    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.

  • 5. Boman, Krister
    et al.
    Lindahl, Annika
    Karolinska institutet, Inst för kvinnors och barns hälsa.
    Björk, Olle
    Disease-related distress in parents of children with cancer at various stages after the time of diagnosis.2003In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 42, no 2, p. 137-46Article in journal (Refereed)
    Abstract [en]

    This study evaluates and describes disease-related distress in parents, with particular focus on the association between the time elapsed since the child's cancer diagnosis and a number of indicators of distress. In a cross-sectional design, 264 mothers and fathers of children with various malignancies completed a multidimensional questionnaire focusing on 11 illness-specific and general indicators of distress. Parents were assessed from 4 weeks to 14 years after the child's diagnosis, and age of children at onset of illness ranged from newly born to 21 years (mean approximately 6 years). The levels of distress related to loss of control, self-esteem, anxiety, depression, sleep disturbances, and psychological and physical distress were lower among parents for whom a longer period of time had elapsed from the time of diagnosis. However, the time elapsed could not explain all of the variation in these stress reactions, or any of the variation in uncertainty, disease-related fear and loneliness. The child's age at diagnosis and treatment situation at assessment were surpassed by time elapsed since diagnosis as predictors of variance in parental distress. The pattern observed indicates the presence of disease-related distress even years after the completion of medical treatment. The findings point to the need for research to identify parents at particular risk of suffering long-term harmful consequences from the prolonged stress of parenting a child with cancer. The necessity of longitudinal studies to evaluate the proportion of acute stress in relation to chronic or cumulative parental stress is emphasized.

  • 6. Forinder, Ulla
    et al.
    Claesson, Lovisa
    Szybek, Katharina
    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.
    Exploring the Content of Post-Traumatic Stress Symptoms among Parents after Paediatric Stem Cell Transplant2015In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 10, no 5, article id e0126905Article in journal (Refereed)
    Abstract [en]

    In the present study the aim was to explore the content in a trauma reported in a self-report questionnaire by parents of children with a life threatening illness. Semi-structured interviews were performed, with the aim to explore the specific cognitive and behavioral content of the trauma related symptoms reported by the individual informant. The transcripts of the interviews were analyzed with content analysis using a direct approach with a-priori categories according to the B and C categories of the DSM-IV diagnostic criteria for PTSD. The results give us the picture of a complex situation, where the self-report instrument PCL captured a spectrum of qualitatively different cognitions. The parents described traumatic thoughts and images relating not only to experiences in the past (i.e., truly post-traumatic), but also to current stressors and expected future events.

  • 7. Forinder, Ulla
    et al.
    Lindahl Norberg, Annika
    Karolinska institutet, Inst. för kvinnors och barns hälsa.
    "Now we have to cope with the rest of our lives". Existential issues related to parenting a child surviving a brain tumour.2010In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 18, no 5, p. 543-51Article in journal (Refereed)
    Abstract [en]

    The findings underscore the importance of the social network, validating and supporting parents through this process. Moreover, in this social network the paediatric oncology and neurology care is a significant part.

  • 8.
    Forinder, Ulla
    et al.
    Socialhögskolan, Stockholms universitet.
    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.
    Posttraumatic growth and support among parents whose children have survived stem cell transplantation2014In: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 18, no 4, p. 326-335Article in journal (Refereed)
    Abstract [en]

    In the current study, we investigated the occurrence of posttraumatic growth (PTG) among parents whose children had had stem cell transplantation (SCT) and survived. Although SCT is well established, it remains stressful and dangerous, and SCT is only performed if there is no other choice of treatment to be considered. A questionnaire batteries including the Post-Traumatic Stress Disorder (PTSD) Check List-Civilian version and the Post-Traumatic Growth Inventory were sent out to a cross-sectional national sample of parents of children who had had SCT six months or more before the study. The response rate was 66% (n = 281). The data were analyzed in relation to parents' appraisal of the event, gender, and perceived social support. The results confirm that SCT in childhood is an event of extreme adversity for the parents. Indications of PTSD were found among an important minority of the parents. Nevertheless, a large proportion of the parents had experienced growth as a consequence of the child's illness. Appreciation of life and personal strength were the domains with the highest scores. Moreover, a higher level of PTG was correlated with a higher level of posttraumatic stress and with an experience of the trauma as more severe. In summary, the study indicates that PTG is a relevant concept for this group of parents.

  • 9.
    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)
  • 10.
    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.

  • 11.
    Hovén, Emma
    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.
    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.
    Feldman, Inna
    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, 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: Economic late effects for mothers and fathers of children diagnosed with cancer2013Conference paper (Refereed)
  • 12.
    Hovén, Emma
    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.
    Pöder, Ulrika
    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, Clinical Psychology in Healthcare.
    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. Department of Women's and Children's Health, Karolinska Institutet.
    Impact of a child’s cancer disease on parents’ everyday life: A longitudinal study from Sweden2017In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 56, no 1, p. 93-100Article in journal (Refereed)
    Abstract [en]

    Background: A child's cancer disease may disrupt the daily life of the affected family for a long period. The aim was to describe restrictions on parents' leisure activities and work/studies during and after the child's treatment. Methods: This study used data from a cohort of mothers and fathers (n = 246) of children diagnosed with cancer. Data was collected five times from two months after diagnosis to one year after end of treatment. Reports of restrictions were evaluated over time, between mothers and fathers, and in relation to parent-reported child symptom burden (The Memorial Symptom Assessment Scale) and partial post-traumatic stress disorder (PTSD) (The PTSD Checklist-Civilian Version). Results: Two (51%) and four (45%) months after diagnosis, about half reported that their leisure activities were restricted at least some of the time. Corresponding percentages for restrictions on work/ studies were 84% and 77%. One year after end of treatment, the great majority reported that their leisure activities (91%) and/or work/studies (76%) were never/seldom restricted. During treatment, more mothers than fathers reported restrictions on work/studies all/most of the time. After end of treatment, gender was only related to reports of restrictions among parents not reporting partial PTSD. More parents who reported being restricted all/most of the time also reported partial PTSD and/or a greater symptom burden for the child. Conclusion: Parents report frequent restrictions on everyday life during treatment. One year after end of treatment, parents report only a limited impact of the child's cancer on their leisure activities and work/studies. More parents who report restrictions also report partial PTSD and/or a greater child symptom burden. The effect of gender on restrictions varies depending on reports of partial PTSD. Future studies of gender differences regarding the impact of a child's cancer on parents' everyday life should thus consider mothers' and fathers' level of psychological distress.

  • 13.
    Hovén, Emma
    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.
    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.
    A longitudinal assessment of work situation, sick leave, and household income of mothers and fathers of children with cancer in Sweden2013In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 52, no 6, p. 1076-1085Article in journal (Refereed)
    Abstract [en]

    Background. The diagnosis of childhood cancer often results in an altered life situation for the parents, characterized by difficulties regarding work, family and household demands. Previous research shows that parents’ work situation and income are impacted, yet, few studies have explored the issue from a longitudinal perspective. This study sought to increase the knowledge about the socio-economic conditions of parents of children with cancer in Sweden by means of a longitudinal assessment of work situation, sick leave, and household income. Material and methods. The sample consisted of mothers (n = 139) and fathers (n = 138) of children with cancer recruited from 2002 to 2004. Data was collected by telephone interviews at six time points, ranging from the time of diagnosis to one year after the end of treatment. Results. Findings showed that parents’ work situation was most evidently impacted during the child's treatment, when the greatest proportions of non-working and sick-listed parents were found. Compared with the time of diagnosis, fewer mothers worked up to three months after the end of treatment, and more mothers were on sick leave one year after the end of treatment. Although the extent of sick leave among fathers did not differ compared with the time of diagnosis, fewer fathers worked one year after the end of treatment. Household income was significantly reduced during the child's treatment and months thereafter, while income was at an equal level as before the diagnosis for most families one year after the end of treatment. Conclusion. The results offer a unique understanding of how mothers’ and fathers’ work situation and income are impacted in the short- and long-term, and give guidance on how to improve the comprehensive support given to parents of children with cancer. Socio-economical issues should be emphasized as these may provide targets for policy interventions aiming to reduce parental strain related to work and finances.

  • 14. Lindahl, Cecilia
    et al.
    Lundqvist, Peter
    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.
    Swedish Dairy Farmers' Perceptions of Animal-Related Injuries2012In: Journal of Agromedicine, ISSN 1059-924X, E-ISSN 1545-0813, Vol. 17, no 4, p. 364-376Article in journal (Refereed)
    Abstract [en]

    Animal-related injuries are among the most common occupational injuries in agriculture. Despite the large number of documented animal-related injuries in dairy farming, the issue has received relatively limited attention in the scientific literature. The farmers' own perspectives and views on risks and safety during livestock handling and what they think are effective ways of preventing injuries are valuable for the future design of effective interventions. This paper presents results from a qualitative study with the aim to investigate Swedish dairy farmers' own experience of animal-related occupational injuries, as well as their perceptions of and attitudes towards them, including risk and safety issues, and prevention measures. A total of 12 dairy farmers with loose housing systems participated in the study. Data collection was conducted by means of semistructured in-depth interviews. Three main themes with an impact on risks and safety when handling cattle were identified: the handler, the cattle, and the facilities. They all interact with each other, influencing the potential risks of any work task. Most of the farmers believed that a majority of the injuries can be prevented, but there are always some incidents that are impossible to foresee. In conclusion, this study indicates that Swedish dairy farmers are aware of the dangers from working with cattle. However, even though safety is acknowledged by the farmers as an important and relevant issue, in the end safety is often forgotten or not prioritized. One concern is that farmers are willing to take calculated risks to save money or time. In situations where they work alone with high stress levels and under economic distress, safety issues are easily given low priority.

  • 15.
    Lindahl Norberg, Annika
    Childhood Cancer Research Unit, Department of Woman and Child Health, Karolinska Institutet, Stockholm, Sweden.
    Burnout in Mothers and Fathers of Children Surviving Brain Tumour2007In: Journal of clinical psychology in medical settings, ISSN 1068-9583, E-ISSN 1573-3572, Vol. 14, no 2, p. 130-137Article in journal (Refereed)
    Abstract [en]

    The aim of this paper was to investigate the occurrence of burnout among parents of brain tumour survivors. Burnout was assessed in 24 mothers and 20 fathers of childhood brain tumour survivors, using the Shirom–Melamed Burnout Questionnaire. Parents of children with no history of chronic or serious diseases served as a reference group. Mothers’ burnout scores were significantly higher compared with reference mothers. For fathers, no relation between burnout and being a parent of a brain tumour survivor was established, despite a nonsignificant tendency in the same direction as for the mothers. In conclusion, the parenting burden after a child’s brain tumour may include chronic strain, and this may be particularly taxing for mothers. The findings encourage further studies of psychological exhaustion among parents of children with special needs.

  • 16.
    Lindahl Norberg, Annika
    et al.
    Karolinska institutet, inst f kvinnors och barns hälsa.
    Green, Alexandra
    Stressors in the daily life of parents after a child's successful cancer treatment.2007In: Journal of psychosocial oncology, ISSN 0734-7332, E-ISSN 1540-7586, Vol. 25, no 3, p. 113-22Article in journal (Refereed)
    Abstract [en]

    In previous studies, the report of distress has been documented in parents after successfully completing cancer treatment of a child. It is typically assumed that this distress represents lasting reactions to experiences during active treatment, in the form of post-traumatic stress or less severe crisis reactions. However, some researchers have suggested that parents may also perceive current stressors related to a child's cancer even after successful completion of the cancer treatment. Using two family cases as a framework, we discuss strain and new conditions requiring adaptation in various aspects of the everyday life of parents after treatment completion. In addition, we argue that an examination of psychological exhaustion and fatigue in these parents may be appropriate. Further examination is needed on the nature of parental stress after a child's cancer treatment. The distinction is important, since the appropriate methods for professional support may differ with regard to parents struggling to cope with current stressors and those showing signs of persistent post-traumatic stress or fatigue.

  • 17.
    Lindahl Norberg, Annika
    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. Karolinska Institutet.
    Mellgren, Karin
    Winiarski, Jacek
    Forinder, Ulla
    Relationship between problems related to child late effects and parent burnout after pediatric hematopoietic stem cell transplantation2014In: Pediatric Transplantation, ISSN 1397-3142, E-ISSN 1399-3046, Vol. 18, no 3, p. 302-309Article in journal (Refereed)
    Abstract [en]

    A few studies have indicated that parents' reactions to a child's serious disease may entail long-term stress for the parents. However, further knowledge of its consequences is valuable. The aim of the study was to investigate the occurrence of burnout in a Swedish national sample of parents of children who had undergone HSCT and survived. Burnout (Shirom-Melamed Burnout Questionnaire) and estimations of the child's health status (Lansky/Karnofsky estimations and study-specific questions) were self-reported by 159 mothers and 123 fathers. In addition, physicians made estimations of the child's health status (Lansky/Karnofsky estimations). Nonparametric tests revealed that burnout symptoms occurred more often among fathers of children who had undergone transplantation within the last five yr compared to fathers of children with no history of serious disease (34.4% vs. 19.9%). Burnout among mothers and fathers was associated with the child's number and severity of health impairments up to five yr after the child underwent HSCT (Spearman's rho for mothers 0.26-0.36 and for fathers 0.36-0.61). In conclusion, chronic stress in parents after a child's HSCT seems to abate eventually. However, parents should be monitored and offered adequate support when needed. Moreover, the situation of fathers in the often mother-dominated pediatric setting should receive more attention in research as well as in the clinic.

  • 18.
    Lindahl Norberg, Annika
    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.
    Pöder, Ulrika
    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.
    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.
    Objective and subjective factors as predictors of post-traumatic stress symptoms in parents of children with cancer: a longitudinal study2012In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 7, no 5, p. e36218-Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    Parents of children with cancer report post-traumatic stress symptoms (PTSS) years after the child's successful treatment is completed. The aim of the present study was to analyze a number of objective and subjective childhood cancer-related factors as predictors of parental PTSS.

    METHODS:

    Data were collected from 224 parents during and after their child's cancer treatment. Data sources include self-report questionnaires and medical records.

    RESULTS:

    In a multivariate hierarchical model death of the child, parent's perception of child psychological distress and total symptom burden predicted higher levels of PTSS. In addition, immigrants and unemployed parents reported higher levels of PTSS. The following factors did not predict PTSS: parent gender, family income, previous trauma, child's prognosis, treatment intensity, non-fatal relapse, and parent's satisfaction with the child's care.

    CONCLUSIONS:

    Although medical complications can be temporarily stressful, a parent's perception of the child's distress is a more powerful predictor of parental PTSS. The vulnerability of unemployed parents and immigrants should be acknowledged. In addition, findings highlight that the death of a child is as traumatic as could be expected.

  • 19.
    Lindahl Norberg, Annika
    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.
    Pöder, Ulrika
    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 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.
    Early avoidance of disease- and treatment-related distress predicts post-traumatic stress in parents of children with cancer2011In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 15, no 1, p. 80-84Article in journal (Refereed)
    Abstract [en]

    Purpose of the research: It has previously been demonstrated that parents of children with cancer often exhibit symptoms of post-traumatic stress (PTSS) even though the child's treatment is successfully completed. For the development of interventions we need to identify predictors of PTSS, which are possible to influence. Based on contemporary learning theory, it was hypothesized that early avoidance of disease- and treatment-related distress would predict the development of parental post-traumatic stress after completion of the child's cancer treatment. Methods and sample: Parents' cognitive and behavioural avoidance of disease- and treatment-related distressing stimuli during and immediately after a child's cancer treatment and PTSS one year after the end of treatment was investigated. Data was collected with the PTSD Checklist Civilian Version (PCL-C) from 111 mothers and 109 fathers. Key results: As hypothesized, avoidance during (T1-T3) and immediately after (T4) the child's treatment predicted PTSS among parents one year after (T6) completion of the child's treatment. Moreover, avoidance early on during the child's treatment seemed to be a greater risk factor for PTSS and post-traumatic stress disorder (PTSD) for bereaved than non-bereaved parents. Conclusions: Avoiding reminders of stressful experiences related to a child's cancer disease during and immediately after the child's treatment seems to increase the risk for parents, mothers and fathers alike, of experiencing symptoms of post-traumatic stress later. Interventions based on cognitive behavioural therapy with elimination of avoidance as a central component may be of use in this population.

  • 20.
    Lindahl Norberg, Annika
    et al.
    Karolinska institutet, Inst för kvinnors och barns hälsa.
    Steneby, S
    Experiences of parents of children surviving brain tumour: a happy ending and a rough beginning.2009In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 18, no 4, p. 371-80Article in journal (Refereed)
    Abstract [en]

    Despite a large number of studies reporting distress in parents after successfully completed cancer treatment of a child, few have explored the influence of current matters. The objective of this study was to explore parents' perceptions of post-treatment influence of childhood brain tumour. Semi-structured individual interviews were performed with the parents of seven children who had completed treatment for various types of brain tumour. Through inductive thematic analysis five key themes were derived, including 16 sub-themes. The key themes relate to: (1) survivor needs related to training and everyday life activities, where parents invested a large amount of time and commitment; (2) the everyday family life was restricted: family life in focus; (3) parenting role and routines had become more demanding; (4) for the parent as an individual daily routine as well as the view of life had changed; and (5) parental concerns and worries regarding the survivor's current and future well-being were amplified. Findings of the study suggest that the parents in the study struggle with the consequences of tangible strain, as well as existential challenges. Follow-up support should include updated information about the child's present state, and how it can be improved, as well as coaching when assisting and supporting the child.

  • 21.
    Lindahl Norberg, Annika
    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.
    Säker och god vård vid universitet2013In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, no 49-50Article in journal (Other (popular science, discussion, etc.))
  • 22. Lindström, C
    et al.
    Aman, J
    Lindahl Norberg, Annika
    Karolinska institutet, inst f kvinnors o barns hälsa.
    Increased prevalence of burnout symptoms in parents of chronically ill children.2010In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 99, no 3, p. 427-32Article in journal (Refereed)
    Abstract [en]

    Burnout may be a useful model for understanding long-term parental responses and should be acknowledged among the different types of psychological consequences of the multi-faceted experience of parenting a child with chronic illness. Gender seems to influence the risk of burnout symptoms. Continued research about other background factors, and how the parents' situation changes over time are warranted. In the clinic, we need to draw attention to the group of parents who may suffer from burnout.

  • 23. Lindström, Caisa
    et al.
    Aman, Jan
    Norberg, Annika Lindahl
    Karolinska institutet, Inst. för kvinnors och barns hälsa.
    Parental burnout in relation to sociodemographic, psychosocial and personality factors as well as disease duration and glycaemic control in children with Type 1 diabetes mellitus.2011In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 100, no 7, p. 1011-7Article in journal (Refereed)
    Abstract [en]

    AIM:  To examine associations between burnout and sociodemographic, psychosocial, personality and medical factors in parents of children with Type 1 Diabetes Mellitus (T1DM).

    METHODS:  A total of 252 parents of children with T1DM participated in a population-based study. We used self-report questionnaires to assess symptoms of burnout and background factors.

    RESULTS: Psychosocial background factors were significantly associated with burnout in parents, whereas there were no associations between sociodemographic or medical factors and burnout. For both genders, parental burnout was associated with low social support, lack of leisure time, financial concerns and a perception that the child's disease affects everyday life. Low self-esteem and high need for control were risk factors for maternal burnout.

    CONCLUSION: In the screening of risk factors for long-term stress in parents of children with T1DM, we should recognize parents' attitudes as well as situational psychosocial issues. In clinics, we need to pay attention to the day-to-day life circumstances in the support of these parents. Certain factors were associated with the risk for burnout only for mothers, which warrant further investigation of gender aspects. Continued research about the causal relationship between the parental responsibility, psychosocial factors and burnout is warranted.

  • 24.
    Norberg, Annika Lindahl
    Karolinska institutet, Inst f kvinnors och barns hälsa.
    Parents of children surviving a brain tumor: burnout and the perceived disease-related influence on everyday life.2010In: Journal of pediatric hematology/oncology (Print), ISSN 1077-4114, E-ISSN 1536-3678, Vol. 32, no 7, p. e285-9Article in journal (Refereed)
    Abstract [en]

    Parents of children diagnosed with a brain tumor often report distress, even after successfully completed cancer treatment. The aim of this study was to examine predictors of burnout (ie stress-induced exhaustion) in parents of children who have had a brain tumor. Twenty-four mothers and 20 fathers completed self-report questionnaires on 2 occasions at an interval of 7 months. Controlling for generic stress, parents' perception of the influence of the disease on everyday life-predicted burnout symptoms. Moreover, parents' appraisal of a disease-related influence on everyday life showed stability, implying that parental stress may be chronic. The findings encourage furthermore investigation of chronic stress among parents of children diagnosed with cancer.

  • 25. 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.

  • 26.
    Norberg, Annika Lindahl
    et al.
    Karolinska institutet, inst f kvinnors och barns hälsa.
    Boman, Krister K
    Parent distress in childhood cancer: a comparative evaluation of posttraumatic stress symptoms, depression and anxiety.2008In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 47, no 2, p. 267-274Article in journal (Refereed)
    Abstract [en]

    The aim was to assess symptoms consistent with posttraumatic stress (PTS; cognitive intrusions, avoidance, arousal) related to the child's illness, and generic distress (anxiety, depression) in parents of childhood cancer patients. Outcomes were compared to normative and relevant reference data, and analysed for their dependence on time passed since diagnosis. Swedish parents (266 mothers, 208 fathers) were recruited at two centres. Data from a clinical sample of posttraumatic stress disorder (PTSD) patients and parents of healthy children were used for comparison. The Impact of Events Scale (IES-R) was used for assessing PTS symptoms, and self-report scales for anxiety and depression. Elevated stress and generic distress varied as a function of time from diagnosis. Up to 12% of parents for whom >5 years had passed since diagnosis still reported equally, or more intrusive thoughts, avoidance and arousal when contrasted to patients suffering from PTSD. Parents of recently diagnosed children had more cancer-related intrusive thoughts than those of long-term survivors. Heightened anxiety and depression was most prominent in mothers and fathers up to 2.5 years after diagnosis. In conclusion, severe generic distress characterises the first years after diagnosis, and initially common PTS symptoms are found in a considerable portion of parents years after diagnosis. Clinically, attention should be paid to continuous parent support needs. Individual variation vis-à-vis distress vulnerability should be acknowledged, and presupposed gender differences avoided. When treatment situation asks the most of parents' collaboration, many are under pressure of severe stress.

  • 27.
    Norberg, Annika Lindahl
    et al.
    Karolinska institutet, inst f kvinnors och barns hälsa.
    Boman, Krister K
    Parents' perceptions of support when a child has cancer: a longitudinal perspective.2007In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 30, no 4, p. 294-301Article in journal (Refereed)
    Abstract [en]

    Previous research has shown perceived social support to be important for maintaining psychological well-being. However, severe stress may influence a person's perception of the availability and value of support from others. In this prospective study, we investigated changes in subjectively perceived social support among parents of children with cancer. Furthermore, we examined the role of parent gender and emotional distress (anxiety and depression) in predicting change in perceived support. Fifty-one parents (29 mothers and 22 fathers) participated. Perceived support, anxiety, and depression were assessed with self-report questionnaires. Parents were examined on 2 occasions. The initial assessment was completed within the first 6 months of the child's cancer treatment. At the time of the follow-up assessment 12 to 24 months later, cancer treatment was completed for all patients. On a group level, parents reported significantly poorer perceived support at the second assessment. However, further examination showed that for one fourth of the group, perceived support was improved. Depressive symptoms during the child's treatment predicted decline in perceived support. Anxiety and gender were not predictive of a change in perceived support.A comprehensive pediatric care model should pay particular attention to parents with a tottering perception of social support. Furthermore, the findings underscore the importance of early psychosocial attention to avoid negative long-term consequences of depression. Being in the frontline of patient care, the pediatric oncology nurse plays an important role in identifying early parents at risk and in shaping parents' perception of support.

  • 28.
    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)
  • 29.
    Norberg, Annika Lindahl
    et al.
    Karolinska institutet, inst f kvinnors och barns hälsa.
    Lindblad, Frank
    Boman, Krister K
    Coping strategies in parents of children with cancer.2005In: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 60, no 5, p. 965-75Article in journal (Refereed)
    Abstract [en]

    This study examined 395 parents (224 mothers and 171 fathers) of children with cancer in Sweden in terms of coping, assessed using the Utrecht Coping List. The use of each of seven coping strategies among parents of children with cancer was compared with data from parents of children with no serious or chronic diseases. In addition, the relationship between coping strategies and anxiety/depression was examined. No differences in the frequency of using the seven coping strategies were found between the study group and the reference group. Neither did the use of coping strategies differ among parents of children with various types of cancer, nor among parents at various points in time after the child's cancer diagnosis. A more frequent use of active problem-focusing, and a less frequent use of avoidance behaviour and passive reaction pattern, was related to lower levels of anxiety and depression in parents of children with cancer and in reference parents. Analyses of parents of children at different time points after diagnosis and in different diagnostic groups indicated that contextual demands influence the relation between coping and anxiety/depression.

  • 30.
    Norberg, Annika Lindahl
    et al.
    Karolinska institutet, inst f kvinnors och barns hälsa.
    Lindblad, Frank
    Boman, Krister K
    Parental traumatic stress during and after paediatric cancer treatment.2005In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 44, no 4, p. 382-8Article in journal (Refereed)
    Abstract [en]

    The objective was to cross-sectionally compare parents of children during (n = 175) and after (n = 238) cancer treatment regarding traumatic stress (intrusion, avoidance, arousal). In both groups, time since child's diagnosis ranged from one month to six years. Intrusion and arousal were more frequent in parents during ongoing treatment, although also reported by many parents after treatment. Stress was evaluated in relation to situational and demographic factors: Parents who had experienced a relapse did not differ from parents of non-relapsed children. Time since diagnosis was only weakly associated with stress. In the stage of completed treatment the risk for severe stress was elevated in parents with lower education and immigrant parents. Mothers reported somewhat higher levels of stress than fathers, although the findings were ambiguous. To conclude, many parents experience high levels of disease-related stress, even after successful treatment. The pattern of stress symptoms may vary according to educational level, ethnicity, and gender.

  • 31.
    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.

  • 32.
    Olsson, Erik
    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.
    Alfonsson, Sven
    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.
    Brantnell, Anders
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    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.
    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.
    Hauffman, Anna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Held, Claes
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, UCR-Uppsala Clinical Research Center.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    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.
    Mattsson, Susanne
    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.
    Sjöström, Jonas
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Informatics and Media, Information Systems.
    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 – internet-based psychosocial care and psychological treatment in connection to somatic disease2013Conference paper (Refereed)
  • 33.
    Olsson, Erik
    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.
    Alfonsson, Sven
    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.
    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.
    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.
    Held, Claes
    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 Medical Sciences.
    Johansson, Birgitta
    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 Radiology, Oncology and Radiation Science, Oncology.
    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.
    Lochan, Ruth
    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 Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Mattsson, Susanne
    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.
    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 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: a research program on psychosocial care via the internet2012Conference paper (Refereed)
    Abstract [en]

    U-CARE is one of the Swedish government’s strategic research programs atUppsala University. The overarching goal is to promote psychosocial healthamong patients suffering from somatic disease and their significant others by means of self-help programs delivered via an internet platform. Another goal is to reduce costs for individuals and the society caused by emotional distress in response to somatic disease. Professionals within clinical psychology, health economics, and information systems collaborate to reach this goal.

    Approximately 20% of patients suffering from somatic disease as well as theirsignificant others experience a clinically relevant level of emotional distress in response to disease and treatment. This is in itself alerting, but becomes even moreproblematic since physicians and nurses show low sensitivity and specificityin detecting patients and significant others experiencing a clinically relevant level of distress. This can result in persistent distress causing human suffering as well as costs for individuals and the society.

    During 2010-2011 an internet platform: www.u-care.se to provide interactive support and cognitive behavioral therapy has been constructed within the U-CARE program. The platform supports, among other things, rule-based unfolding of self-help material for participants, interaction between participants and therapists, interaction within a participant community, and research including a detailed log of participants’ behaviors on the platform. In addition self-help programs of interactive support and cognitive behavioural therapy for adolescents with cancer: U-CARE: TeenCan, adults with cancer: U-CARE: AdultsCan, and adults having had a myocardial infarct: U-CARE: Heart to be provided via www.u-care.se have been constructed.

    Through a multi-disciplinary and design-oriented approach, the U-CARE program aims at developing new evidence-based knowledge in basic and applied psychosocial health care,and actively promoting its implementation in health care practice as well as in undergraduate and advanced education.

  • 34. 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.

  • 35.
    Van't Hooft, I
    et al.
    Childhood Cancer Research Unit, Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.; Karolinska Univ Hosp, Astrid Lindgren Childrens Hosp, Neuropaediat Unit, Stockholm, Sweden.
    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. Karolinska Inst, Dept Womens & Childrens Hlth, Childhood Canc Res Unit, Stockholm, Sweden.
    Björklund, A
    Uppsala University Children's Hospital, Uppsala, Sweden.
    Lönnerblad, M
    Neuropaediatric Unit, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm, Sweden.; Natl Agcy Special Needs Educ & Sch, Stockholm, Sweden.
    Strömberg, Bo
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics. Uppsala University Children's Hospital, Uppsala, Sweden.
    Multiprofessional follow-up programmes are needed to address psychosocial, neurocognitive and educational issues in children with brain tumours2016In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 105, no 6, p. 676-683Article in journal (Refereed)
    Abstract [en]

    AIM: The aim of this study was to coordinate the structured psychosocial, neurocognitive and educational follow-up of children treated for brain tumours with the medical protocol and apply the model in two Swedish healthcare regions.

    METHODS: We invited all children living in the two regions, who had been diagnosed with a brain tumour from October 1, 2010, through June 30, 2012, to participate along with their parents. The follow-up programme evaluated the emotional status of the parents and patients and assessed the children's general cognitive level, working memory, speed of performance, executive functions and academic achievement from diagnosis through to adult care.

    RESULTS: During the study period, 61 children up to the age of 17.1 years were diagnosed with a brain tumour, but 18 of these were excluded for various reasons. The majority of the mothers (70%) displayed significantly poor emotional status, as did 34% of the fathers and 21% of the children. The majority of the children (57%) also showed poor neurocognitive performance and needed special adaptations at school (66%).

    CONCLUSION: Our findings indicate the need for coordinated, multiprofessional follow-up programmes, well anchored in the healthcare organisation, for children diagnosed with brain tumours.

  • 36. van't Hooft, Ingrid
    et al.
    Norberg, Annika Lindahl
    Karolinska institutet, Inst f kvinnors och barns hälsa.
    SMART cognitive training combined with a parental coaching programme for three children treated for medulloblastoma.2010In: NeuroRehabilitation, ISSN 1878-6448, Vol. 26, no 2, p. 105-13Article in journal (Refereed)
    Abstract [en]

    In a pilot study we examined the feasibility of a condensed version of the Swedish Memory and Attention Re-Training on children treated for medulloblastoma combined with a structured coaching programme for their parents. Parental coaching contained the translation of the child's new skills into daily life, and education regarding their own stress mechanisms. Before and after intervention we assessed the children's cognitive performance, social relations and self image as well as their parents stress. All three families continued the programme without interruption. Observations revealed that this condensed version of the programme was more stressful to participants. However, several aspects of the children's attention and memory performance improved from pre to post-training assessment. In addition, all of the children reported enhancement of their social relations and self image. Initially, symptoms of parental stress were pronounced for the three mothers, but fairly low for the fathers. After training and coaching, the stress level of both mothers and fathers was low. Our findings encourage full scale studies examining whether this combination of condensed cognitive training and specific coaching programme for parents may influence not only the children's cognitive performance but also their social relations, self image and their parents stress.

  • 37. Vrijmoet-Wiersma, C M J
    et al.
    Egeler, R M
    Koopman, H M
    Bresters, D
    Lindahl Norberg, Annika
    Karolinska institutet Inst f kvinnors o barns hälsa.
    Grootenhuis, M A
    Parental stress and perceived vulnerability at 5 and 10 years after pediatric SCT.2010In: Bone Marrow Transplantation, ISSN 0268-3369, E-ISSN 1476-5365, Vol. 45, no 6, p. 1102-8Article in journal (Refereed)
    Abstract [en]

    With the aim of assessing parental stress after SCT, 73 parents of children and adolescents who underwent SCT 5 or 10 years ago responded to questionnaires on general distress (General Health Questionnaire (GHQ)), disease-related stress (Pediatric Inventory for Parents-short form (PIP-SF)) and perceptions of child vulnerability (Child Vulnerability Scale (CVS)). General distress scores were comparable with the reference groups, but 40% of the mothers at 5 years after SCT reported increased stress levels as compared with 26% in the community-based reference group. Disease-related stress was comparable with the reference group of parents of children who were just off cancer treatment, 5 years after SCT. At 10 years after SCT, scores were lower than the reference group. Perceived child vulnerability did diminish over time, but remained high in parents of SCT survivors, compared with parents of healthy children: 96% of the parents at 5 years after SCT and 76% of the parents at 10 years after SCT scored above the cutoff point. Perceived vulnerability was found to be a predictor for parental disease-related stress. To conclude, although most parents of SCT survivors are resilient, the majority of parents perceive their child to be much more vulnerable as compared with parents of healthy children. This perception is associated with disease-related stress and may induce overprotective parenting.

  • 38. Vrijmoet-Wiersma, C M J
    et al.
    Egeler, R M
    Koopman, H M
    Lindahl Norberg, Annika
    Karolinska institutet, Inst för kvinnors och barns hälsa.
    Grootenhuis, M A
    Parental stress before, during, and after pediatric stem cell transplantation: a review article.2009In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 17, no 12, p. 1435-43Article in journal (Refereed)
    Abstract [en]

    Psychosocial assessment before SCT, during the acute phase and in the longer term, is necessary to identify parents in need for support and follow-up care.

  • 39. Wenemark, Marika
    et al.
    Vernby, Asa
    Norberg, Annika Lindahl
    Can incentives undermine intrinsic motivation to participate in epidemiologic surveys?2010In: European Journal of Epidemiology, ISSN 0393-2990, E-ISSN 1573-7284, Vol. 25, no 4, p. 231-5Article in journal (Refereed)
    Abstract [en]

    Response rates to surveys are decreasing. The purpose of this study was to evaluate the use of lottery tickets as incentives in an epidemiologic control group. A self-administered questionnaire was sent to parents in the municipality of Stockholm, Sweden, who were to be used as a control group in a study addressing stress in parents of children with cancer. A stratified random sample of 450 parents were randomized into three incentive groups: (a) no incentive; (b) a promised incentive of one lottery ticket to be received upon reply; (c) a promised incentive of one lottery ticket to be received upon reply and an additional lottery ticket upon reply within 1 week. The overall response rate across the three groups was 65.3%. The response rate was highest in the no incentive group (69.3%) and lowest in the one plus one lottery ticket group (62.0%). In a survival analysis, the difference between the two response curves was significant by the log-rank test (P = 0.04), with the no incentive group having a shorter time to response than the incentive group. Our findings suggest that the use of lottery tickets as incentives to increase participation in a mail questionnaire among parents may be less valuable or even harmful. Incentives may undermine motivation in studies in which the intrinsic motivation of the respondents is already high.

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