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  • 1.
    Ander, Malin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    Thorsell Cederberg, Jenny
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    Hovén, Emma
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare. Karolinska institutet.
    Exploration of psychological distress experienced by survivors of adolescent cancer reporting a need for psychological support2018In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 13, no 4, article id e0195899Article in journal (Refereed)
    Abstract [en]

    Objective

    In this qualitative study, we aimed to provide an in-depth exploration of cancer-related psychological distress experienced by young survivors of cancer during adolescence reporting a need for psychological support.

    Methods

    Two individual interviews were held with ten young survivors of cancer diagnosed in adolescence. The interviews were audio-recorded and transcribed verbatim. Analysis followed the guidelines for inductive qualitative manifest content analysis.

    Results

    The survivors described distress experienced during and after the end of treatment. Five categories comprising 14 subcategories were generated. The categories included: A tough treatment, Marked and hindered, Not feeling good enough, Struggling with the fragility of life, and finally, An ongoing battle with emotions.

    Conclusion

    Young survivors of adolescent cancer reporting a need for psychological support described feeling physically, socially, and mentally marked by the cancer experience. They struggled with powerlessness, insecurity, social disconnection, loneliness, and feelings of being unimportant and a failure, and had difficulties understanding and managing their experiences. These concerns should be addressed in psychological treatments for the population irrespective of which approach or model is used to understand survivors’ difficulties. A transdiagnostic approach targeting processes that underpin different manifestations of distress may be effective.

  • 2.
    Carlsson, Tommy
    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. Sophiahemmet University, Stockholm, Sweden.
    Kukkola, Laura
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    Ljungman, Lisa
    Department of Women’s and Children’s Health, Karolinska Institutet, 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.
    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.
    Psychological distress in parents of children treated for cancer: An explorative study2019In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 14, no 6, article id e0218860Article in journal (Refereed)
    Abstract [en]

    Objective

    To explore psychological distress experienced by parents who express a need for psychotherapy after curative treatment for their child's cancer.

    Methods

    15 parents (eight mothers and seven fathers) of children treated for cancer (median time since end of curative treatment: two years) were recruited via a pediatric oncology center. Each parent was interviewed twice and data was analyzed with inductive latent qualitative content analysis.

    Results

    Two overarching themes emerged. One theme, An unfamiliar and frightening situation during treatment, portrayed experiences during the treatment period, and included the sub-themes Initial reactions to the uncontrollable situation, Adjustment to the situation, and Focus on supporting the child. Another theme, Emotional struggles after end of curative treatment, portrayed experiences following curative treatment, and included the sub-themes Transitioning back to life as it was before the diagnosis, Emotional scars, Uncontrollable fears and worries of diseases, and New perspectives on life.

    Conclusions

    Parents of children with cancer experience existential, physical, psychological, and social struggles. They describe an unstable situation after diagnosis and having focused their attention towards protecting their child during treatment. After the end of curative treatment, they experience challenges with transitioning back to life as it was before the diagnosis and dealing with their own emotional scars and fears related to the child's cancer. The findings indicate an unmet need for psychological support among parents of children treated for cancer.

  • 3.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, University Hospital.
    Hovén, Emma
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Carlbring, Per
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Attentional bias towards cancer-related stimuli is related to symptoms of posttraumatic stress in parents of children recently diagnosed with cancer2015Conference paper (Refereed)
  • 4.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Hovén, Emma
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Carlbring, Per
    Stockholm Univ, Dept Psychol, S-10691 Stockholm, Sweden.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Posttraumatic stress and attentional bias towards cancer-related stimuli in parents of children recently diagnosed with cancer2016In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 11, no 4, article id e0152778Article in journal (Refereed)
    Abstract [en]

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

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

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

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

  • 5.
    Grönqvist, Helena
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Hovén, Emma
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Swedish parents’ need and opportunity to talk to a psychologist after end of their child’s cancer treatment: a longitudinal study2015Conference paper (Refereed)
  • 6.
    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.

  • 7.
    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)
  • 8.
    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.

  • 9.
    Hovén, Emma
    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.
    Hagström, Josefin
    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.
    Pöder, Ulrika
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    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.
    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.
    Parents' needs of support following the loss of a child to cancer: a Swedish, prospective, longitudinal, multi-centre studyIn: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226XArticle in journal (Refereed)
    Abstract [en]

    Introduction: Parents' needs of support following the loss of a child to cancer and whether these needs are met are not fully known. This study aimed to describe parents' needs, opportunity, and benefit of support from healthcare professionals and significant others from shortly after, up to five years after bereavement.

    Material and methods: Data were collected at nine months (T5, n = 20), eighteen months (T6, n = 37), and five years after the child's death (T7, n = 38). Parents answered questions via telephone about need, opportunity, and benefit of talking to psychologists, social workers, partners, and friends. Needs were examined in relation to parent and child characteristics, including sex, age, and parent posttraumatic stress symptoms (PTSS).

    Results: The proportion reporting a need of support from psychologists varied from 56% and 46% at T5 to 20% and 6% at T7 (mothers and fathers, respectively). All mothers and 90% of fathers reported a need of support from social workers at T5. At T7, the corresponding percentages were 30% and 6%. More mothers than fathers reported a need of support from friends at T7 (p = .001). The proportion reporting a need of support from psychologists, social workers, and friends decreased over time (all p <= .050). Parents reporting a higher level of PTSS were more likely to report a need of support from social workers at T6 (p = .040) and from psychologists (p = .011) and social workers (p = .012) at T7. Opportunities for support from healthcare professionals varied, most reported need of and opportunity for support from significant others. Almost all reported benefit from received support.

    Conclusion: Bereaved parents need and benefit of support from healthcare professionals and significant others. Results show a need for improved access to psychosocial services, even at five years post bereavement. Large-scale studies are needed to better understand the associations between parent and child characteristics and support needs.

  • 10.
    Hovén, Emma
    et al.
    Karolinska Inst, Dept Womens & Childrens Hlth, Childhood Canc Res Unit, Stockholm, Sweden.
    Lannering, Birgitta
    Univ Gothenburg, Dept Womens & Childrens Hlth, Pediat Unit, Gothenburg, Sweden.
    Gustafsson, Göran
    Karolinska Inst, Dept Womens & Childrens Hlth, Childhood Canc Res Unit, Stockholm, Sweden.
    Boman, Krister K.
    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, Childhood Canc Res Unit, Stockholm, Sweden.
    Information needs of survivors and families after childhood CNS tumor treatment: a population-based study2018In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 57, no 5, p. 649-657Article in journal (Refereed)
    Abstract [en]

    Background: This study examines information needs and satisfaction with provided informationamong childhood central nervous system (CNS) tumor survivors and their parents.Material and methods: In a population-based sample of 697 adult survivors in Sweden, 518 survivorsand 551 parents provided data. Information needs and satisfaction with information were studied usinga multi-dimensional standardized questionnaire addressing information-related issues.Results: Overall, 52% of the survivors and 48% of the parents reported no, or only minor, satisfactionwith the extent of provided information, and 51% of the survivors expressed a need for more informationthan provided. The information received was found useful (to some extent/very much) by 53%,while 47% did not find it useful, or to a minor degree only. Obtaining written material was associatedwith greater satisfaction and usefulness of information. Dissatisfaction with information was associatedwith longer time since diagnosis, poorer current health status and female sex. The survivors experiencedunmet information needs vis-a-vis late effects, illness education, rehabilitation and psychologicalservices. Overall, parents were more dissatisfied than the survivors.Conclusion: These findings have implications for improvements in information delivery. Information inchildhood CNS tumor care and follow-up should specifically address issues where insufficiency wasidentified, and recognize persistent and with time changing needs at the successive stages of longtermsurvivorship.

  • 11.
    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.

  • 12.
    Hovén, Emma
    et al.
    Department of Women’s and Children’s Health, Childhood Cancer Research Unit, Karolinska Institute, Stockholm, Sweden.
    Lannering, Birgitta
    Department of Pediatrics, The Queen Silvia Children’s Hospital, University Hospital, University of Gothenburg, Gothenburg, Sweden.
    Gustafsson, Göran
    Department of Women’s and Children’s Health, Childhood Cancer Research Unit, Karolinska Institute, Stockholm, Sweden.
    Boman, Krister K
    Department of Women’s and Children’s Health, Childhood Cancer Research Unit, Karolinska Institute, Stockholm, Sweden.
    The met and unmet health care needs of adult survivors of childhood central nervous system tumors: A double-informant, population-based study2011In: Cancer, ISSN 0008-543X, E-ISSN 1097-0142, Vol. 117, no 18, p. 4294-4303Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    The purpose of the current study was to examine the persistent health care needs (HCNs) of adult survivors of childhood central nervous system tumors.

    METHODS:

    In this population-based study, 526 of 679 eligible survivors and 550 parents provided data. Survivors' HCNs were assessed using a questionnaire covering 4 domains: Medical Care, care coordination and communication (Care Coordination), Illness Education, and Psychosocial Services. Needs were categorized as no need, met need, and unmet need. Outcomes were analyzed specifically in relation to survivors' functional late effects as assessed using the Health Utilities Index Mark 2/3.

    RESULTS:

    Approximately 40% of survivors experienced their HCNs as exceeding the supposed general population average, and 41% had a current HCN that was unmet. The most common unmet need concerned the Psychosocial Services domain (reported by 40%), followed by a lack of Illness Education (35%), Care Coordination (22%), and Medical Care (15%). Survivors experiencing functional late effects had greater HCNs, and a greater percentage of unmet needs. Agreement between survivor-reported and parent proxy-reported HCNs was satisfactory, whereas agreement for survivors' unmet HCNs ranged from poor to satisfactory.

    CONCLUSIONS:

    Findings based on reliable double-informant data demonstrated that a considerable percentage of adult survivors report unmet HCNs, with female sex, younger age at diagnosis, and indications of disability and poor health status comprising significant risk factors. Issues critical for improved, comprehensive, long-term follow-up care were identified. Addressing these issues adequately in clinical follow-up extending into adulthood would likely improve the quality of comprehensive care for this patient group.

  • 13.
    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.
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Boger, Marike
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljótsson, Brjánn
    Silberleitner, Nicola
    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.
    Cernvall, Martin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Posttraumatic Stress in Parents of Children Diagnosed with Cancer: Hyperarousal and Avoidance as Mediators of the Relationship between Re-Experiencing and Dysphoria2016In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 11, no 5, article id e0155585Article in journal (Refereed)
    Abstract [en]

    Background Increased understanding of the relationships between different symptom clusters involved in posttraumatic stress symptoms (PTSS) could guide empirical research and clinical practice. The objective of the present study was to investigate whether hyperarousal and avoidance mediated the relationship between re-experiencing and dysphoria in parents of children diagnosed with cancer. Methods Longitudinal data from parents of children receiving cancer therapy were used. PTSS were assessed using the PTSD Checklist Civilian Version at one week (T1), two (T2) and four months (T3) after diagnosis. Mediation analyses for multiple mediators were conducted for mothers (n = 122) and fathers (n = 121), respectively. The mediation model tested the assumption that the PTSS symptom clusters hyperarousal and avoidance mediated the relationship between re-experiencing and dysphoria. Results For fathers, none of the hypothesized mediators were significant. For mothers, hyperarousal mediated the relationship between re-experiencing and dysphoria, but avoidance did not. Conclusions Results suggest that hyperarousal is important for the development of dysphoria in mothers, supporting use of interventions targeting such symptoms in the early and ongoing period following the child's diagnosis.

  • 14.
    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.

  • 15.
    Kukkola, Laura
    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.
    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.
    Cernvall, Martin
    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.
    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.
    Perceptions of support among Swedish parents of children after end of successful cancer treatment: A prospective, longitudinal study2017In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 56, no 12, p. 1705-1711Article in journal (Refereed)
    Abstract [en]

    Introduction: Most children survive childhood cancer, however parenting a child diagnosed with cancer is a major challenge. The main aim of the current study was to describe Swedish parents’ need, opportunity and benefit of support from healthcare professionals and significant others after end of a child’s successful cancer treatment.

    Material and methods: Data was collected from approximately one week after end of successful treatment/six months after transplantation (T4, n ¼ 212) up to five years thereafter (T7, n ¼ 137). Parents answered questions via telephone about need, opportunity and benefit of talking to psychologists, social workers, partners and friends.

    Results: The proportion reporting need of support from healthcare professionals varied between 73% (mothers’ need of support from social workers, T4) and 7% (fathers’ need of support from psychologists/social workers, T7). Need of support from significant others varied between 99% (mothers’ and fathers’ need of support from partners, T4) and 27% (fathers’ need of support from friends, T7). The proportion reporting need of support decreased over time (p < .001), no decrease occurred from three months after end of treatment/nine months after transplantation (T5) to one year after end of treatment/18 months after transplantation (T6). More mothers than fathers reported need of support from friends at T5 (p < .001) and T7 (p < .05) and from psychologists at T7 (p < .05). Opportunities for support from healthcare professionals varied, most reported opportunity for support from significant others. Almost all reported benefit from received support.

    Conclusion: A declining number reports a need of support over time, however subgroups report an unmet need and almost every parent perceive support from healthcare professionals as beneficial. More parents should get access to psychosocial support services after end of a child’s cancer treatment/transplantation.

  • 16.
    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.
    Boger, Marike
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ander, Malin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljótsson, Brjánn
    Karolinska Inst, Div Psychol, Dept Clin Neurosci, Stockholm, Sweden.
    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 Neuroscience, Psychiatry, University Hospital.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology.
    Hovén, Emma
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Impressions that last: Particularly negative and positive experiences reported by parents five years after the end of a child's successful cancer treatment or death2016In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 11, no 6, article id e0157076Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To describe the experience of parenting a child diagnosed with cancer by examining particularly negative and positive experiences reported by parents of childhood cancer survivors and parents of children lost to cancer.

    METHODS: 168 parents (88 mothers, 80 fathers) participated. Data were collected five years after the end of successful treatment or the child's death. The parents' experiences were identified by open-ended semi-structured questions about particularly negative and positive experiences of the child's cancer. An inductive approach was used in which the manifest verbal content of the answers was analysed using content analysis.

    RESULTS: The analysis revealed eight categories of negative experience (child late effects; distressing events; healthcare; impaired relationships; long-term psychological consequences; own reactions; surrounding institutions; the fact that the child got cancer) and seven categories of positive experience (healthcare; improved relationships; long-term consequences for the child; personal development; support systems; treatment outcome; unexpected joy). The categories were related to past events or to the present situation. The findings indicate variations in experiences between parents of survivors and bereaved parents, and between fathers and mothers, as some experiences were only reported by parents of survivors and some experiences were only reported by mothers.

    CONCLUSIONS: The results highlight the importance of past and present events to parents, and accordingly the long-lasting impact of paediatric cancer on parents. The results also point to the wide range of negative as well as positive experiences involved in parenting a child diagnosed with cancer, and provide a comprehensive understanding of the overall experience for parents of children with cancer. Specifically, the findings give guidance to healthcare providers by illustrating the need to provide healthcare personnel with continuous training in communication skills, offering parents opportunities to meet other parents in the same situation and increasing the access to psychosocial supportive services and psychological care.

  • 17.
    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 Development of Posttraumatic Stress Symptoms in Parents of Children With Cancer2014Conference paper (Refereed)
  • 18.
    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.

  • 19.
    Toft, Teolinda
    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.
    Alfonsson, Sven
    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, Ctr Psychiat Res, Dept Clin Neurosci, Stockholm, Sweden;Stockholm Cty Council, Stockholm Hlth Care Serv, Norra Stn Gatan 69, SE-11364 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. Karolinska Inst, Dept Womens & Childrens Hlth, Childhood Canc Res Unit, Stockholm, Sweden.
    Carlsson, Tommy
    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. Sophiahemmet Univ, Dept Hlth Promoting Sci, Stockholm, Sweden.
    Feeling excluded and not having anyone to talk to: Qualitative study of interpersonal relationships following a cancer diagnosis in a sibling2019In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 42, p. 76-81Article in journal (Refereed)
    Abstract [en]

    Purpose: To explore experiences related to interpersonal relationships following a cancer diagnosis in a sibling.

    Methods: Respondents (n = 7 females) were recruited by means of convenience sampling during a camp for children affected by childhood cancer and their siblings. Data from children and adolescents with a sibling diagnosed with cancer was collected through individual face-to-face interviews and analyzed using systematic text condensation.

    Results: Two categories portrayed the experiences related to interpersonal relationships following a cancer diagnosis in a sibling. Feeling excluded while wanting to maintain a relationship with their ill sibling and be involved in the care portrayed that trying to be involved in the care of their ill sibling was a stressful and difficult experience, since they were simultaneously expected to also manage household chores and attend school. Feeling stigmatized and exposed in social contexts while needing an allowing space to talk about their experiences portrayed the emotional difficulties evoked by social situations and behaviors of others, which left respondents feeling exposed and mistreated. Having the possibility to talk about their experiences and receiving social support was described as essential in order to cope with the situation.

    Conclusions: Health professionals need to take into consideration the emotional difficulties and vulnerable situation that children and adolescents who have a sibling diagnosed with cancer are at risk of experiencing. Stigmatization and social exposure present a risk of psychological distress. Having an allowing space to communicate feelings and experiences is desired. Interventions may be necessary to help these individuals psychologically cope.

  • 20.
    Wikman, Anna
    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.
    Cernvall, Martin
    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.
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Parents of children diagnosed with cancer: work situation and sick leave, a five-year post end-of-treatment or a child's death follow-up study2016In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 55, no 9-10, p. 1152-1157Article in journal (Refereed)
    Abstract [en]

    Background: Cancer in a child is associated with a significant impact on parental employment. We assessed the proportions of parents of survivors and bereaved parents working and reporting sick leave five years after end of successful treatment (ST)/child's death (T7) compared with one year after end of ST/child's death (T6) and the association between partial post-traumatic stress disorder (PTSD) and work situation and sick leave at T7.

    Participants and procedure: The sample included 152 parents of survivors (77 mothers, 75 fathers) and 42 bereaved parents (22 mothers, 20 fathers) of children diagnosed with cancer in Sweden.

    Results: The proportions of parents working or reporting sick leave did not differ among mothers and fathers of survivors (92% vs. 96% working, 20% vs. 18% on sick leave) or among bereaved mothers and fathers (91% vs. 90% working, 14% vs. 20% on sick leave) at T7. There was no change from T6 to T7 in the proportion of fathers working (fathers of survivors 91% vs. 96%, bereaved fathers 95% vs. 90%). Although more mothers of survivors (92% vs. 82%) and bereaved mothers (91% vs. 77%) worked at T7 than at T6, this increase was not significant. Fewer bereaved mothers reported sick leave at T7 than at T6 (14% vs. 59%, p<0.05). Although more fathers reported sick leave at T7 than at T6 (fathers of survivors 18% vs. 8%, bereaved fathers 20% vs. 15%), this was not significant. Partial PTSD was not associated with parents' work situation or sick leave at T7.

    Conclusion: Results suggest little adverse effect on work situation and sick leave among parents of survivors and bereaved parents five years after end of ST/child's death from cancer. However, the pattern of change observed differed between parents, which could potentially indicate possible delayed consequences for fathers not captured in the present paper.

  • 21.
    Wikman, Anna
    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.
    Mattsson, Elisabet
    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. Department of Health Care Sciences , Ersta Sköndal Bräcke University College , Stockholm , Sweden..
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    Hovén, Emma
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    Prevalence and predictors of symptoms of anxiety and depression, and comorbid symptoms of distress in parents of childhood cancer survivors and bereaved parents five years after end of treatment or a child's death2018In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 57, no 7, p. 950-957Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    Symptoms of anxiety and depression and their comorbidity in parents of children diagnosed with cancer, particularly later in the cancer trajectory, need further study. The aim was to investigate the prevalence and predictors of symptoms of anxiety and depression in parents of childhood cancer survivors and bereaved parents, five years after end of treatment or a child's death and to investigate comorbidity between symptoms of anxiety, depression and posttraumatic stress.

    MATERIAL AND METHODS:

    Participants were 132 parents (68 mothers, 64 fathers) of survivors and 37 bereaved parents (20 mothers, 17 fathers). Chi-square test and t-test were used to explore differences in symptoms of anxiety and depression. Comorbidity was explored using Pearson's correlations and Chi-square test. Multivariable hierarchical linear regressions were used to identify predictors of symptoms of anxiety and depression.

    RESULTS:

    In parents of survivors, 20% reported anxiety and 14% reported depression. Corresponding figures among bereaved parents were 30% and 35%. Among parents of survivors reporting clinically relevant anxiety and depression, a larger proportion were mothers than fathers. No such difference was found among bereaved parents. Symptoms of anxiety, depression and posttraumatic stress were highly correlated (all r ≥ 0.65, p < .001). Comorbid symptoms were reported by 7-11% of parents of survivors and 14-24% of bereaved parents. In multivariable analyses, more severe symptoms of depression were associated with anxiety, posttraumatic stress and distress related to previous stressful life events. Being a mother, symptoms of depression and posttraumatic stress were associated with more severe symptoms of anxiety.

    CONCLUSION:

    A subset of parents report clinically elevated symptoms of anxiety and depression, comorbid anxiety, depression and posttraumatic stress. Experiencing distress related to previous stressful life events as well as concurrent comorbidity were associated with more severe psychological distress at five years after end of treatment/a child's death. These results deserve further attention in research and clinical care.

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