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Lindahl Norberg, Annika
Alternative names
Publications (10 of 39) Show all publications
Grönqvist, H., Olsson, E., Johansson, B., Held, C., Sjöström, J., Lindahl Norberg, A., . . . von Essen, L. (2017). Fifteen Challenges in Establishing a Multidisciplinary Research Program on eHealth Research in a University Setting: A Case Study. Journal of Medical Internet Research, 19(5), Article ID e173.
Open this publication in new window or tab >>Fifteen Challenges in Establishing a Multidisciplinary Research Program on eHealth Research in a University Setting: A Case Study
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2017 (English)In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 19, no 5, article id e173Article in journal (Refereed) Published
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.

Keywords
eHealth, interdisciplinary studies, organization, administration
National Category
Psychology Information Systems, Social aspects
Identifiers
urn:nbn:se:uu:diva-323577 (URN)10.2196/jmir.7310 (DOI)000417014900001 ()28536090 (PubMedID)
Note

De 2 första författarna delar förstaförfattarskapet.

Available from: 2017-06-08 Created: 2017-06-08 Last updated: 2018-03-07Bibliographically approved
Ander, M., Wikman, A., Ljótsson, B., Grönqvist, H., Ljungman, G., Woodford, J., . . . von Essen, L. (2017). 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 trial. BMJ Open, 7(1), Article ID e013906.
Open this publication in new window or tab >>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 trial
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2017 (English)In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 7, no 1, article id e013906Article in journal (Refereed) Published
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.

Keywords
adolescence, cognitive behavioural therapy, feasibility study, neoplasms, psychological treatment
National Category
Psychology Cancer and Oncology
Identifiers
urn:nbn:se:uu:diva-313898 (URN)10.1136/bmjopen-2016-013906 (DOI)000395590300138 ()
Funder
Swedish Childhood Cancer Foundation, PR2013-0039
Available from: 2017-01-25 Created: 2017-01-25 Last updated: 2017-12-19Bibliographically approved
Hovén, E., Grönqvist, H., Pöder, U., von Essen, L. & Lindahl Norberg, A. (2017). Impact of a child’s cancer disease on parents’ everyday life: A longitudinal study from Sweden. Acta Oncologica, 56(1), 93-100
Open this publication in new window or tab >>Impact of a child’s cancer disease on parents’ everyday life: A longitudinal study from Sweden
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2017 (English)In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 56, no 1, p. 93-100Article in journal (Refereed) Published
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.

National Category
Cancer and Oncology Public Health, Global Health, Social Medicine and Epidemiology Psychology
Identifiers
urn:nbn:se:uu:diva-306725 (URN)10.1080/0284186X.2016.1250945 (DOI)000392819600015 ()27834555 (PubMedID)
Funder
Swedish Childhood Cancer Foundation, PROJ08/010Swedish Research Council, K2008-70X-20836-01-3 K2011-70X-20836-04-4 K2015-99X-20836-08-4Swedish Cancer Society, 2007/1015 2010/726
Available from: 2016-11-03 Created: 2016-11-03 Last updated: 2018-02-28Bibliographically approved
Ander, M., Thorsell Cederberg, J., Lindahl Norberg, A. & von Essen, L. (2016). Losing your context - Exploration of emotional suffering after cancer during adolescence. In: : . Paper presented at 18th International Psycho Oncology Society Congress (pp. 81-81). , 25(SP. S3)
Open this publication in new window or tab >>Losing your context - Exploration of emotional suffering after cancer during adolescence
2016 (English)Conference paper, Poster (with or without abstract) (Refereed)
Series
Psycho Oncology, ISSN 1057-9249, E-ISSN 1099-1611 ; 3
National Category
Cancer and Oncology Psychology
Identifiers
urn:nbn:se:uu:diva-309578 (URN)000385942700180 ()
Conference
18th International Psycho Oncology Society Congress
Note

Meeting Abstract: 244

Available from: 2016-12-14 Created: 2016-12-05 Last updated: 2017-03-23Bibliographically approved
Van't Hooft, I., Norberg, A. L., Björklund, A., Lönnerblad, M. & Strömberg, B. (2016). Multiprofessional follow-up programmes are needed to address psychosocial, neurocognitive and educational issues in children with brain tumours. Acta Paediatrica, 105(6), 676-683
Open this publication in new window or tab >>Multiprofessional follow-up programmes are needed to address psychosocial, neurocognitive and educational issues in children with brain tumours
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2016 (English)In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 105, no 6, p. 676-683Article in journal (Refereed) Published
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.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:uu:diva-269579 (URN)10.1111/apa.13207 (DOI)000376265400026 ()26355275 (PubMedID)
Funder
Swedish Childhood Cancer Foundation
Available from: 2015-12-17 Created: 2015-12-17 Last updated: 2017-12-01Bibliographically approved
Forinder, U., Claesson, L., Szybek, K. & Norberg, A. L. (2015). Exploring the Content of Post-Traumatic Stress Symptoms among Parents after Paediatric Stem Cell Transplant. PLoS ONE, 10(5), Article ID e0126905.
Open this publication in new window or tab >>Exploring the Content of Post-Traumatic Stress Symptoms among Parents after Paediatric Stem Cell Transplant
2015 (English)In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 10, no 5, article id e0126905Article in journal (Refereed) Published
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.

National Category
Psychology Pediatrics
Identifiers
urn:nbn:se:uu:diva-256524 (URN)10.1371/journal.pone.0126905 (DOI)000354543500084 ()25965909 (PubMedID)
Available from: 2015-06-26 Created: 2015-06-24 Last updated: 2017-12-04Bibliographically approved
Ander, M., Norberg, A. L., Ljungman, G., Ljotsson, B. & von Essen, L. (2015). Identification of Cancer-related Psychological Suffering Experienced by Young People Diagnosed with Cancer During Adolescence and Development of a Psychological Treatment to Reduce This Suffering. In: : . Paper presented at 2015 World Congress of Psycho-Oncology (a joint conference of the International Psycho-Oncology Society and the American Psychosocial Oncology Society) 28 July – 1 August 2015 Washington, DC, USA (pp. 114-115). , 24(S2), Article ID P1-21.
Open this publication in new window or tab >>Identification of Cancer-related Psychological Suffering Experienced by Young People Diagnosed with Cancer During Adolescence and Development of a Psychological Treatment to Reduce This Suffering
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2015 (English)Conference paper, Poster (with or without abstract) (Refereed)
National Category
Cancer and Oncology
Identifiers
urn:nbn:se:uu:diva-261131 (URN)000358255000202 ()
Conference
2015 World Congress of Psycho-Oncology (a joint conference of the International Psycho-Oncology Society and the American Psychosocial Oncology Society) 28 July – 1 August 2015 Washington, DC, USA
Available from: 2015-09-01 Created: 2015-08-31 Last updated: 2016-04-18
Norberg, A. L. & Forinder, U. (2014). Co-morbidity of Psychological Reactions Among Parents After Paediatric Stem Cell Transplantation. Psycho-Oncology, 23(3), 265-266
Open this publication in new window or tab >>Co-morbidity of Psychological Reactions Among Parents After Paediatric Stem Cell Transplantation
2014 (English)In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 3, p. 265-266Article in journal, Meeting abstract (Other academic) Published
National Category
Psychology Cancer and Oncology
Identifiers
urn:nbn:se:uu:diva-238354 (URN)000344003700397 ()
Available from: 2014-12-12 Created: 2014-12-11 Last updated: 2017-12-05Bibliographically approved
Riva, R., Forinder, U., Arvidson, J., Mellgren, K., Toporski, J., Winiarski, J. & Lindahl Norberg, A. (2014). Patterns of psychological responses in parents of children that underwent stem cell transplantation. Psycho-Oncology, 23(11), 1307-1313
Open this publication in new window or tab >>Patterns of psychological responses in parents of children that underwent stem cell transplantation
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2014 (English)In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 11, p. 1307-1313Article in journal (Refereed) Published
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.

National Category
Applied Psychology
Identifiers
urn:nbn:se:uu:diva-237515 (URN)10.1002/pon.3567 (DOI)000344242500014 ()24830676 (PubMedID)
Funder
U‐Care: Better Psychosocial Care at Lower Cost? Evidence-based assessment and Psychosocial Care via Internet, a Swedish Example
Available from: 2014-12-03 Created: 2014-12-03 Last updated: 2017-12-05Bibliographically approved
Forinder, U. & Lindahl Norberg, A. (2014). Posttraumatic growth and support among parents whose children have survived stem cell transplantation. Journal of Child Health Care, 18(4), 326-335
Open this publication in new window or tab >>Posttraumatic growth and support among parents whose children have survived stem cell transplantation
2014 (English)In: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 18, no 4, p. 326-335Article in journal (Refereed) Published
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.

National Category
Other Health Sciences
Identifiers
urn:nbn:se:uu:diva-220268 (URN)10.1177/1367493513496666 (DOI)000346024400004 ()23990656 (PubMedID)
Available from: 2014-03-12 Created: 2014-03-12 Last updated: 2017-12-05Bibliographically approved
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