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  • 1.
    Abrahamsson, Niclas
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Ahlund, Lovisa
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology.
    Ahrin, Elsa
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology.
    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.
    Video-based CBT-E improves eating patterns in obese patients with eating disorder: A single case multiple baseline study2018In: Journal of Behavior Therapy and Experimental Psychiatry, ISSN 0005-7916, E-ISSN 1873-7943, Vol. 61, p. 104-112Article in journal (Refereed)
    Abstract [en]

    BACKGROUND AND OBJECTIVES:

    Cognitive Behavioral Therapy (CBT) is effective for treating eating disorders but it may be difficult to reach patients living far from urban centers. Mobile video-based psychotherapy may potentially improve service reach but has not yet been evaluated. The purpose of this study was to investigate the effects of mobile video-based CBT for eating disorder and to explore the feasibility to use this technology in clinical care.

    METHODS:

    A controlled single case multiple baseline design was used which allowed for statistical analyses with randomization tests and non-overlap of all pairs (NAP). Five patients in the first stage of eating disorder treatment were included and the main outcome variable was daily meal frequency. Secondary outcome variables included eating disorder symptoms, psychological distress and treatment satisfaction.

    RESULTS:

    The treatment resulted in a significant (p < .01) increase in daily meal frequency with medium to large effect sizes (combined NAP = .89). Four participants reported reliable improvements in eating disorder symptoms and three reported improvements in mood. The participants reported high satisfaction with the treatment and with the mobile video-application despite some technical problems.

    LIMITATIONS:

    Self-reported data on eating behavior is prone to be biased and the results of single case studies may have limited generalizability.

    CONCLUSION:

    CBT can be delivered effectively via a mobile video application and, despite some technological issues, can be well received by patients. All participants in this study had previous low access to mental health services and reported high satisfaction with the treatment format.

  • 2.
    Alfonsson, Sven
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare. Karolinska Inst, Dept Clin Neurosci, Stockholm, Sweden; Stockholm Hlth Care Serv, Ctr Psychiat Res, Stockholm, Sweden.
    Lundgren, Tobias
    Karolinska Inst, Dept Clin Neurosci, Stockholm, Sweden; Stockholm Hlth Care Serv, Ctr Psychiat Res, Stockholm, Sweden.
    Andersson, Gerhard
    Karolinska Inst, Dept Clin Neurosci, Stockholm, Sweden; Stockholm Hlth Care Serv, Ctr Psychiat Res, Stockholm, Sweden; Linköping Univ, Dept Behav Sci & Learning, Linköping, Sweden.
    Clinical supervision in cognitive behavior therapy improves therapists' competence: a single-case experimental pilot study2020In: Cognitive Behaviour Therapy, ISSN 1650-6073, E-ISSN 1651-2316, Vol. 49, no 5, p. 425-438Article in journal (Refereed)
    Abstract [en]

    Clinical supervision is a cornerstone in psychotherapists' training but there are few empirical evaluations on the effects of supervision on therapists' competencies. The aim of this study was therefore to evaluate the effects of standardized supervision on rater-assessed competency in Cognitive Behavior Therapy (CBT). Six therapists with basic training in CBT were provided with protocol-based clinical supervision in CBT in a single-case experimental multiple baseline design. The supervision focused on specific CBT competencies and used experiential learning methods such as role-play. Each therapist recorded weekly treatment sessions during phases without and with supervision. The therapists' CBT competence was assessed by third-party raters using the Revised Cognitive Therapy Scale (CTS-R). Statistical analyses showed that the therapists' CTS-R scores increased significantly during the phase with supervision with a mean item increase of M = 0.71 (range = 0.50-1.0) on the supervision focus areas. This is one of the first empirical studies that can confirm that supervision affect CBT competencies. The results also suggest that supervision can be manualized and that supervisees have a positive perception of more active training methods. Further studies are needed to replicate the results and to find ways to improve the impact of supervision.

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  • 3.
    Alfonsson, Sven
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare. Karolinska Inst, Dept Clin Neurosci, Ctr Psychiat Res, Stockholm, Sweden; Stockholm Hlth Care Serv, Stockholm, Sweden.
    Parling, Thomas
    Karolinska Inst, Dept Clin Neurosci, Ctr Psychiat Res, Stockholm, Sweden; Stockholm Hlth Care Serv, Stockholm, Sweden.
    Spännargård, Åsa
    Karolinska Inst, Dept Clin Neurosci, Ctr Psychiat Res, Stockholm, Sweden; Stockholm Hlth Care Serv, Stockholm, Sweden.
    Andersson, Gerhard
    Karolinska Inst, Dept Clin Neurosci, Ctr Psychiat Res, Stockholm, Sweden; Stockholm Hlth Care Serv, Stockholm, Sweden; Linköping Univ, Dept Behav Sci & Learning, Linköping, Sweden.
    Lundgren, Tobias
    Karolinska Inst, Dept Clin Neurosci, Ctr Psychiat Res, Stockholm, Sweden; Stockholm Hlth Care Serv, Stockholm, Sweden.
    The effects of clinical supervision on supervisees and patients in cognitive behavioral therapy: a systematic review2018In: Cognitive Behaviour Therapy, ISSN 1650-6073, E-ISSN 1651-2316, Vol. 47, no 3, p. 206-228Article, review/survey (Refereed)
    Abstract [en]

    Clinical supervision is a central part of psychotherapist training but the empirical support for specific supervision theories or features is unclear. The aims of this study were to systematically review the empirical research literature regarding the effects of clinical supervision on therapists’ competences and clinical outcomes within Cognitive Behavior Therapy (CBT). A comprehensive database search resulted in 4103 identified publications. Of these, 133 were scrutinized and in the end 5 studies were included in the review for data synthesis. The five studies were heterogeneous in scope and quality and only one provided firm empirical support for the positive effects of clinical supervision on therapists’ competence. The remaining four studies suffered from methodological weaknesses, but provided some preliminary support that clinical supervision may be beneficiary for novice therapists. No study could show benefits from supervision for patients. The research literature suggests that clinical supervision may have some potential effects on novice therapists’ competence compared to no supervision but the effects on clinical outcomes are still unclear. While bug-in-the-eye live supervision may be more effective than standard delayed supervision, the effects of specific supervision models or features are also unclear. There is a continued need for high-quality empirical studies on the effects of clinical supervision in psychotherapy.

  • 4.
    Alfonsson, Sven
    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. Centre for Psychiatry Research, Department of Clinical Neuroscience Karolinska Institutet and Stockholm, Sweden.
    Spännargård, Åsa
    Parling, Thomas
    Centre for Psychiatry Research, Department of Clinical Neuroscience Karolinska Institutet and Stockholm, Sweden.
    Andersson, Gerhard
    Lundgren, Tobias
    The effects of clinical supervision on supervisees and patients in cognitive-behavioral therapy: a study protocol for a systematic review2017In: Systematic Reviews, E-ISSN 2046-4053, Vol. 6, no 94, p. 1-6Article, review/survey (Refereed)
    Abstract [en]

    Background: Clinical supervision by a senior therapist is a very common practice in psychotherapist training and psychiatric care settings. Though clinical supervision is advocated by most educational and governing institutions, the effects of clinical supervision on the supervisees ’ competence, e.g., attitudes, behaviors, and skills, as well as on treatment outcomes and other patient variables are debated and largely unknown. Evidence-based practice is advocated in clinical settings but has not yet been fully implemented in educational or clinical training settings. The aim of this systematic review is to synthesize and present the empirical literature regarding effects of clinical supervision in cognitive-behavioral therapy. Methods: This study will include a systematic review of the literature to identify studies that have empirically investigated the effects of supervision on supervised psychotherapists and/or the supervisees ’ patients. A comprehensive search strategy will be conducted to identify published controlled studies indexed in the MEDLINE, EMBASE, PsycINFO, and Cochrane Library databases. Data on supervision outcomes in both psychotherapists and their patients will be extracted, synthesized, and reported. Risk of bias and quality of the included studies will be assessed systematically. Discussion: This systematic review will rigorously follow established guidelines for systematic reviews in order to summarize and present the evidence base for clinical supervision in cognitive-behavioral therapy and may aid further research and discussion in this area.

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  • 5.
    Alfonsson, Sven
    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. Centre for Psychiatry Research Department of Clinical Neuroscience Karolinska Institutet & Stockholm Health Care Services, Stockholm, Sweden.
    Wallin, Emma
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology.
    Maathz, Pernilla
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology.
    Factor structure and validity of the Depression Anxiety and Stress Scale-21 in Swedish translation2017In: Journal of Psychiatric and Mental Health Nursing, ISSN 1351-0126, E-ISSN 1365-2850, Vol. 24, no 2-3, p. 154-162Article in journal (Refereed)
    Abstract [en]

    Introduction There is a constant need for theoretically sound and valid self-report instruments for measuring psychological distress. Previous studies have shown that the Depression, Anxiety and Stress Scale-21 (DASS-21) is theoretically sound, but there have been some inconsistent results regarding its factor structure. Aims The aim of the present study was to investigate and elucidate the factor structure and convergent validity of the DASS-21. Methods A total of 624 participants recruited from student, primary care and psychotherapy populations. The factor structure of the DASS-21 was assessed by confirmatory factor analyses and the convergent validity by investigating its unique correlations with other psychiatric instruments. Results A bifactor structure with depression, anxiety, stress and a general factor provided the best fit indices for the DASS-21. The convergent validity was adequate for the Depression and Anxiety subscales but more ambiguous for the Stress subscale. Discussion The present study overall supports the validity and factor structure of the DASS-21. Implications for practice The DASS-21 can be used to measure symptoms of depression and anxiety as well as overall distress. It can be useful for mental health nurses, and other first-line psychiatric professionals, in need of a short, feasible and valid instrument in everyday care

  • 6.
    Alfonsson, Sven
    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.
    Weineland-Strandskov, Sandra
    Sundbom, Magnus
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Upper Abdominal Surgery.
    Self-Reported Hedonism Predicts 12-Month Weight Loss After Roux-en-Y Gastric Bypass2017In: Obesity Surgery, ISSN 0960-8923, E-ISSN 1708-0428, Vol. 27, no 8, p. 2073-2078Article in journal (Refereed)
    Abstract [en]

    Introduction Research regarding psychological risk factors for reduced weight loss after bariatric surgery has yielded mixed results, especially for variables measured prior to surgery. More profound personality factors have shown better promise and one such factor that may be relevant in this context is time perspective, i.e., the tendency to focus on present or future consequences. The aim of this study was to investigate the predictive value of time perspective for 12-month weight loss after Roux-en-Y gastric bypass surgery.

    Methods A total of 158 patients were included and completed self-report instruments prior to surgery. Weight loss was measured after 12 months by medical staff. Background variables as well as self-reported disordered eating, psychological distress, and time perspective were analyzed with regression analysis to identify significant predictors for 12-month weight loss.

    Results The mean BMI loss at 12 months was 14 units, from 45 to 30 kg/m(2). Age, sex, and time perspective could significantly predict weight loss but only male sex and self-reported hedonism were independent risk factors for reduced weight loss in the final regression model.

    Conclusion In this study, self-reported hedonistic time perspective proved to be a better predictor for 12-month weight loss than symptoms of disordered eating and psychological distress. It is possible that a hedonistic tendency of focusing on immediate consequences and rewards is analogous to the impaired delay discounting seen in previous studies of bariatric surgery candidates. Further studies are needed to identify whether these patients may benefit from extended care and support after surgery.

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  • 7.
    Ander, Malin
    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.
    Cancer during adolescence: Psychological consequences and development of psychological treatment2017Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The overall aim of the present thesis was to examine long-term psychological distress following cancer during adolescence and to develop a tailored psychological intervention to reduce cancer-related distress experienced by young survivors of adolescent cancer that was feasible and acceptable.

    Study I adopted a longitudinal design, assessing health-related quality of life (HRQOL) and symptoms of anxiety and depression among adolescents diagnosed with cancer from shortly after diagnosis (n=61) up to 10 years after diagnosis (n=28). Findings suggest that development of HRQOL and anxiety and depression is not linear and whilst the majority adjust well, a subgroup report long-term elevated distress. In Study II, experiences of cancer-related psychological distress were explored using unstructured interviews. Participants described cancer treatment as a mental challenge, felt marked and hindered by the cancer experience, and struggled with feelings of inadequacy and insecurity, existential issues, and difficulties handling emotions. Study III was a preliminary investigation of individualised cognitive behavioural therapy (CBT), alongside the identification and conceptualisation of cancer-related concerns using cognitive-behavioural theory. Significant difficulties with recruitment were encountered. Participants reported cancer-related concerns conceptualised as social avoidance, fear and avoidance of emotions and bodily symptoms, imbalance in activity, and worry and rumination. In Study IV, the acceptability and feasibility of an internet-administered CBT based self-help intervention (ICBT) for young persons diagnosed with cancer during adolescence was examined using an uncontrolled design and embedded process evaluation. The study protocol for Study IV was included in this thesis along with preliminary findings demonstrating significant difficulties with recruitment.

    Overall, findings suggest that whilst the majority of survivors of adolescent cancer adjust well over time a subgroup report elevated levels of distress and a range of distressing cancer-related experiences. A number of cancer-related difficulties were identified in Study II and III, which may be used to inform the development of future psychological treatments for the population. Preliminary investigation of the psychological interventions examined within this thesis further highlights the need for future development work to enhance the feasibility and acceptability of psychological support for the population. 

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  • 8.
    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.
    Lindahl Norberg, Annika
    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.
    Ljungman, Gustaf (Contributor)
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Ljótsson, Brjánn (Contributor)
    Institutionen för klinisk neurovetenskap, Karolinska institutet.
    Ljungman, Lisa (Contributor)
    Cernvall, Martin (Contributor)
    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 (Contributor)
    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 (Contributor)
    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.
    Norlund, Fredrika (Contributor)
    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.
    Toft, Teolinda (Contributor)
    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.
    Arlinger Karlsson, Cecilia (Contributor)
    Grönqvist, Helena (Contributor)
    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.
    Stjernqvist, Claes (Contributor)
    Nordenstam, Lisa (Contributor)
    Boger, Marike
    Skogseid, Ellen (Contributor)
    U-CARE: UngaKan: Ett internet-administrerat guidat självhjälsprogram för unga som diagnosticerats med cancer under tonåren2017Other (Other (popular science, discussion, etc.))
  • 9.
    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, 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.

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  • 10.
    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, 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.

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  • 11.
    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.
    Woodford, Joanne
    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.
    Ljótsson, Brjánn
    Karolinska institutet.
    A preliminary open trial of individualised cognitive behavioural therapy for young survivors of cancer during adolescence: initial findings and conceptualisation of distressManuscript (preprint) (Other academic)
    Abstract [en]

    Objective: A subgroup of adolescent and young adult (AYA) survivors of cancer in adolescence report high levels of psychological distress. Empirically-supported treatments tailored to the concerns experienced by this population are lacking. The aims of this study were to (1) conduct a preliminary evaluation of an individualised cognitive behavioural therapy (CBT) intervention for adolescent and young adult (AYA) survivors of cancer during adolescence and (2) identify and conceptualise cancer-related psychological concerns using cognitive-behavioural theory.

    Methods: A single-arm trial in which ten AYA (17-25 years) survivors of cancer during adolescence were offered up to 15 sessions of individualised CBT guided by behavioural case formulations was undertaken. Clinical outcomes were assessed at baseline, post-treatment, and three months follow-up. Before commencing treatment, two individual qualitative interviews were conducted with each participant. Analysis of cancer-related concerns was guided by qualitative framework analysis and theoretical thematic analysis, and cognitive-behavioural theory was used to inform identification of themes.

    Results: Ten of 201 potential participants invited to participate were included resulting in an overall participation rate of 5%. Nine participants completed treatment and eight completed the follow-up assessment. The majority of concerns reported were cancer-related and conceptualised as social avoidance, fear and avoidance of emotions and bodily symptoms, low mood and unbalance in activity, and worry and rumination.

    Conclusions: Given significant difficulties with recruitment, further research is needed to examine barriers and the impact of mental health literacy and stigma on help seeking in the AYA cancer survivor population. Internet-administered CBT self-help tailored towards the main presenting concerns of AYA cancer survivors may be a promising solution.

  • 12.
    Andersson, Camilla
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Radiology.
    Röing, Marta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research.
    Ehrsson, Ylva Tiblom
    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 Surgical Sciences, Otolaryngology and Head and Neck Surgery.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. 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.
    It's a question of endurance: patients with head and neck cancer experiences of 18F-FDG PET/CT in a fixation mask2017In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 29, p. 85-90, article id S1462-3889(17)30082-0Article in journal (Refereed)
    Abstract [en]

    PURPOSE: This study aimed to explore how patients with head and neck cancer experienced undergoing an (18)F-fluoro-deoxy-glucose positrons emissions tomography/computed tomography ((18)F-FDG PET/CT) examination in a fixation mask.

    METHOD: Interviews were conducted with nine patients with known or suspected head and neck cancer who were scheduled for the examination for the first time. The phenomenological method according to van Manen and his four lifeworld existentials; lived space, lived body, lived time, and lived relation was used to analyse the interviews.

    RESULTS: The thoughts and feelings of the patients during the PET/CT examination varied, some found it very difficult, while others did not. However, for all the patients, it was an experience that required some form of coping to maintain composure for example distraction.

    CONCLUSIONS: PET/CT examnation in a fixation mask may be strenuous for some patients. Patients need more detailed information, including suggestions for coping behaviours, prior to the examination, as well as higher level of support during and after the examination. The results of this study may be used to improve patient care and optimize the procedure of PET/CT examination in a fixation mask.

  • 13.
    Andriopoulos, Thanos
    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.
    Hägg Sylvén, Ylva
    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, Information Systems.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    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.
    Commencement of and Retention in Web-Based Interventions and Response to Prompts and Reminders: Longitudinal Observational Study Based on Two Randomized Controlled Trials2021In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 23, no 3, article id e24590Article in journal (Refereed)
    Abstract [en]

    Background: Web-based interventions are effective for several psychological problems. However, recruitment, adherence, and missing data are challenges when evaluating these interventions. Objective: This study aimed to describe the use patterns during the commencement phase, possible retention patterns (continuation of data provision), and responses to prompts and reminders among participants in 2 randomized controlled trials (RCTs) evaluating web-based interventions. Methods: Data on use patterns logged in 2 RCTs aiming to reduce symptoms of anxiety and depression among adult patients recently diagnosed with cancer (AdultCan RCT) and patients with a recent myocardial infarction (Heart RCT) were analyzed. The web-based intervention in the AdultCan trial consisted of unguided self-help and psychoeducation and that in the Heart trial consisted of therapist-supported cognitive behavioral therapy. In total, 2360 participants' use patterns at first log-in, including data collection at baseline (ie, commencement) and at 2 follow-ups, were analyzed. Both the intervention and comparison groups were analyzed. Results: At commencement, 70.85% (909/1283) and 86.82% (935/1077) of the participants in AdultCan and Heart RCTs, respectively, logged in and completed baseline data collection after receiving a welcome email with log-in credentials. The median duration of the first log-in was 44 minutes and 38 minutes in AdultCan and Heart RCTs, respectively. Slightly less than half of the participants' first log-ins were completed outside standard office hours. More than 80% (92/114 and 103/111) of the participants in both trials explored the intervention within 2 weeks of being randomized to the treatment group, with a median duration of 7 minutes and 47 minutes in AdultCan and Heart RCTs, respectively. There was a significant association between intervention exploration time during the first 2 weeks and retention in the Heart trial but not in the AdultCan trial. However, the control group was most likely to retain and provide complete follow-up data. Across the 3 time points of data collection explored in this study, the proportion of participants responding to all questionnaires within 1 week from the prompt, without a reminder, varied between 35.45% (413/1165) and 66.3% (112/169). After 2 reminders, up to 97.6% (165/169) of the participants responded. Conclusions: Most participants in both RCTs completed the baseline questionnaires within 1 week of receiving the welcome email. Approximately half of them answered questions at baseline data collection outside office hours, suggesting that the time flexibility inherent in web-based interventions contributes to commencement and use. In contrast to what was expected, the intervention groups generally had lower completion rates than the comparison groups. About half of the participants completed the questionnaires without a reminder, but thereafter, reminders contributed to both baseline and follow-up retention, suggesting they were effective. Strategies to increase commencement of and retention in eHealth interventions are important for the future development of effective interventions and relevant research.

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  • 14.
    Beckman, Maria
    et al.
    Karolinska Inst, Ctr Psychiat Res, Dept Clin Neurosci, Stockholm, Sweden.;Stockholm Hlth Care Serv, Stockholm, Sweden..
    Spännargård, Åsa
    Karolinska Inst, Ctr Psychiat Res, Dept Clin Neurosci, Stockholm, Sweden.;Stockholm Hlth Care Serv, Stockholm, Sweden..
    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 Hlth Care Serv, Stockholm, Sweden..
    Can we agree on the quality of clinical supervision?: Inter-rater reliability of the Short-SAGE (Supervision: Adherence and Guidance Evaluation) scale2021In: The Cognitive Behaviour Therapist, E-ISSN 1754-470X, Vol. 13, article id e56Article in journal (Refereed)
    Abstract [en]

    Clinical supervision is a cornerstone in psychotherapist training, but research in this area is hampered by a lack of validated tools for assessing supervision quality. Short-SAGE (Supervision: Adherence and Guidance Evaluation) is an observational instrument designed for evaluating supervision in cognitive behavioural therapy. The aim of this study was to evaluate the inter-rater reliability of Short-SAGE. Four experienced clinical psychologists participated in three 3-hour Short-SAGE coding training sessions, followed by an additional meeting and coding instructions. In a cross-over design, codings of 20 supervision sessions were then assessed with intraclass correlations (ICC), for both the 3- and 7-point scales of the instrument. In the single measure analyses for both scales, only one item showed ICC in the good range, and the rest of the 14 item ICCs were in the poor to fair range. Moreover, on the 3-point scale, five of the 14 inter-rater correlations were non-significant. For research and training purposes, validated tools to assess supervision quality are highly needed. However, instruments for measuring adherence and/or competence are of little value if the coders do not attain inter-rater reliability. Whether quality of supervision is associated with improvements in supervisees' competencies is not yet clear. Short-SAGE provides a tool that may enable empirical research in this area. Further studies are needed to assess whether extensive training can improve the inter-rater reliability of Short-SAGE.

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  • 15.
    Bengtsson, Johan
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Ekselius: Psychiatry.
    Bodén, Robert
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Ekselius: Psychiatry.
    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.
    Mårtensson, Johanna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Radiology. Department of Medical Physics, Uppsala University Hospital.
    Gingnell, Malin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Ekselius: Psychiatry.
    Persson, Jonas
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Ekselius: Psychiatry.
    Autonomic modulation networks in schizophrenia: The relationship between heart rate variability and functional and structural connectivity in the brain2020In: Psychiatry Research: Neuroimaging, ISSN 0925-4927, E-ISSN 1872-7506, Vol. 300, article id 111079Article in journal (Refereed)
    Abstract [en]

    Heart rate variability (HRV), a measurement of autonomic nervous system (ANS) activity, has been found reduced in schizophrenia. The anterior cingulate cortex (ACC), which is important in regulating the ANS, is structurally and functionally affected in schizophrenia. We investigate the relationship between HRV and functional and structural connectivity of the ACC in patients with schizophrenia and healthy controls. Ten patients with a diagnosis of schizophrenia and ten healthy controls were recruited. Heart rate was monitored in a naturalistic out-of-clinic setting. Magnetic resonance imaging (MRI) was performed, including resting-state functional MRI and diffusion tensor imaging. Patients with schizophrenia had significantly lower HRV compared to controls. A positive correlation between ACC connectivity with the bilateral cerebellum and HRV was found in the patients. HRV was also positively correlated with amplitude of low frequency fluctuations (ALFF) in the cerebellum, and with axial diffusivity in the middle cerebellar peduncle, in the patients. There was a significant negative relationship between antipsychotic medication dosage, HRV and all neuroimaging measures related to HRV. We conclude that ACC connectivity seems to be affected in schizophrenia, both structurally and functionally, and that the ACC-cerebellum connectivity, as well as cerebellar function, is associated with ANS regulation in patients with schizophrenia.

  • 16.
    Bengtsson, Johan
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Ekselius: Psychiatry.
    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.
    Igelström, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Åsenlöf: Physiotheraphy.
    Persson, Jonas
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Ekselius: Psychiatry.
    Bodén, Robert
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Ekselius: Psychiatry.
    Ambulatory Heart Rate Variability in Schizophrenia or Depression: Impact of Anticholinergic Burden and Other Factors2021In: Journal of Clinical Psychopharmacology, ISSN 0271-0749, E-ISSN 1533-712X, Vol. 41, no 2, p. 121-128Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Heart rate variability (HRV) has been found reduced in patients with schizophrenia and depression. However, there is a lack of knowledge on how demographic, lifestyle, and pharmacological factors contribute to the reduction in HRV in these patients.

    METHODS: We recruited 37 patients with schizophrenia, 43 patients with unipolar depression, and 64 healthy controls. A combined chest-worn HRV and accelerometer device was used in an ambulatory measurement. Age, sex, anticholinergic burden of medication, nicotine use, body mass index, and ongoing physical activity were assessed in multiple regression models regarding their influence on HRV, measured as the standard deviation of all the RR intervals (SDNN).

    RESULTS: In the fully adjusted model, schizophrenia (β = -0.23, P = 0.019), depression (β = -0.18, P = 0.028), age (β = -0.34, P < 0.000), ongoing physical activity (β = -0.23, P = 0.001), and anticholinergic burden (β = -0.19, P = 0.025) influenced SDNN negatively. Sex, nicotine use, and BMI had negligible effects on SDNN.

    CONCLUSIONS: We show for the first time that a quantified score of anticholinergic burden of medication has a negative relationship to HRV in patients with schizophrenia or depression, but that the diagnoses themselves still exhibit an effect on HRV.

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  • 17.
    Blease, Charlotte
    et al.
    Division of General Medicine, Beth Israel Deaconess Medical Center, Boston, USA.
    DesRoches, Catherine
    Hägglund, Maria
    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.
    Hayden, Adam
    Rexhepi, Hanife
    Salmi, Liz
    Knowledge, power, and patients: The ethics of open notes2021In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257Article in journal (Other (popular science, discussion, etc.))
  • 18. Blease, Charlotte
    et al.
    Dong, Zhiyong
    Torous, John
    Walker, Jan
    Hägglund, Maria
    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.
    DesRoches, Catherine M.
    Association of Patients Reading Clinical Notes With Perception of Medication Adherence Among Persons With Serious Mental Illness2021In: JAMA Network Open, E-ISSN 2574-3805, Vol. 4, no 3, article id e212823Article in journal (Refereed)
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  • 19.
    Blease, Charlotte
    et al.
    Beth Israel Deaconess Med Ctr, Div Gen Med, Boston, MA 02215 USA.
    O'Neill, Stephen F
    Beth Israel Deaconess Med Ctr, Div Gen Med, Boston, MA 02215 USA; Harvard Med Sch, Boston, MA 02115 USA.
    Torous, John
    Harvard Med Sch, Boston, MA 02115 USA; Beth Israel Deaconess Med Ctr, Dept Psychiat, Boston, MA 02215 USA.
    DesRoches, Catherine M
    Beth Israel Deaconess Med Ctr, Div Gen Med, Boston, MA 02215 USA; Harvard Med Sch, Boston, MA 02115 USA.
    Hägglund, Maria
    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.
    Patient Access to Mental Health Notes: Motivating Evidence-Informed Ethical Guidelines2021In: Journal of Nervous and Mental Disease, ISSN 0022-3018, E-ISSN 1539-736X, Vol. 209, no 4, p. 265-269Article in journal (Refereed)
    Abstract [en]

    ABSTRACT: In the last decade, many health organizations have embarked on a revolution in clinical communication. Using electronic devices, patients can now gain rapid access to their online clinical records. Legally, patients in many countries already have the right to obtain copies of their health records; however, the practice known as "open notes" is different. Via secure online health portals, patients are now able to access their test results, lists of medications, and the very words that clinicians write about them. Open notes are growing with most patients in the Nordic countries already offered access to their full electronic record. From April 2021, a new federal ruling in the United States mandates-with few exemptions-that providers offer patients access to their online notes (Office of the National Coordinator for Health Information Technology, Department of Health and Human Services, Available at: https://www.govinfo.gov/content/pkg/FR-2019-03-04/pdf/2019-02224.pdf#page=99). Against these policy changes, only limited attention has been paid to the ethical question about whether patients with mental health conditions should access their notes, as mentioned in the articles by Strudwick, Yeung, and Gratzer (Front Psychiatry 10:917, 2019) and Blease, O'Neill, Walker, Hägglund, and Torous (Lancet Psychiatry 7:924-925, 2020). In this article, our goal is to motivate further inquiry into opening mental health notes to patients, particularly among persons with serious mental illness and those accessing psychological treatments. Using biomedical ethical principles to frame our discussion, we identify key empirical questions that must be pursued to inform ethical practice guidelines.

  • 20.
    Blease, Charlotte R
    et al.
    Beth Israel Deaconess Medical Center, Boston, MA, USA.
    Delbanco, Tom
    Beth Israel Deaconess Medical Center, Boston, MA, USA. Harvard Medical School, Boston, MA, USA.
    Torous, John
    Beth Israel Deaconess Medical Center, Boston, MA, USA. Harvard Medical School, Boston, MA, USA.
    Ponten, Moa
    Karolinska Institutet, Stockholm, Sweden.
    DesRoches, Catherine M
    Beth Israel Deaconess Medical Center, Boston, MA, USA. Harvard Medical School, Boston, MA, USA.
    Hägglund, Maria
    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.
    Walker, Jan
    Beth Israel Deaconess Medical Center, Boston, MA, USA. Harvard Medical School, Boston, MA, USA.
    Kirsch, Irving
    Beth Israel Deaconess Medical Center, Boston, MA, USA. Harvard Medical School, Boston, MA, USA.
    Sharing clinical notes, and placebo and nocebo effects: Can documentation affect patient health?2022In: Journal of Health Psychology, ISSN 1359-1053, E-ISSN 1461-7277, Vol. 27, no 1, p. 135-146, article id 1359105320948588Article in journal (Refereed)
    Abstract [en]

    This paper connects findings from the field of placebo studies with research into patients' interactions with their clinician's visit notes, housed in their electronic health records. We propose specific hypotheses about how features of clinicians' written notes might trigger mechanisms of placebo and nocebo effects to elicit positive or adverse health effects among patients. Bridging placebo studies with (a) survey data assaying patient and clinician experiences with portals and (b) randomized controlled trials provides preliminary support for our hypotheses. We conclude with actionable proposals for testing our understanding of the health effects of access to visit notes.

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  • 21.
    Blease, Charlotte R
    et al.
    OpenNotes, Division of General Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA 02215, USA.
    O'Neill, Stephen
    Walker, Jan
    Hägglund, Maria
    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.
    Torous, John
    Sharing notes with mental health patients: balancing risks with respect2020In: Lancet psychiatry, ISSN 2215-0374, E-ISSN 2215-0366, Vol. 7, no 11, p. 924-925Article in journal (Other academic)
  • 22.
    Blease, Charlotte
    et al.
    Division of General Medicine, Beth Israel Deaconess Medical Center and Harvard Medical School, Boston, MA, United States.
    Torous, John
    Department of Psychiatry, Beth Israel Deaconess Medical Center and Harvard Medical School, Boston, MA, United States.
    Hägglund, Maria
    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. Division of General Medicine, Beth Israel Deaconess Medical Center and Harvard Medical School, Boston, MA, United States.
    Does Patient Access to Clinical Notes Change Documentation?2020In: Frontiers In Public Health, ISSN 2296-2565, Vol. 8, article id 577896Article in journal (Refereed)
    Abstract [en]

    Open, honest, and trustworthy communication is crucial to ensure the effective responses of citizens. Paralleling transparency in the arena of public health are new practice policies that are set to transform the transmission of information at the level of doctors and patients. While patients have legally been entitled to obtain copies of their records for many years, in March 2020 federal legislation in the United States (U.S.) mandated that health providers offer all patients rapid and secure online access to their clinical notes via patient portals (“open notes”) (1). Similar developments are underway in the United Kingdom (U.K.) where in April 2020 it was announced that patients in NHS England will be granted online access, albeit prospectively, to their full general practitioners' notes (2). Worldwide, open notes have already been enacted in more than ten countries including Sweden, Estonia, and Norway (3).

    A variety of surveys have been conducted into patients' and doctors' experiences of open notes but much less is understood about the objective changes in documentation that may arise as a result of patient access (4–7). We review current research into open notes including clinicians' reports on how they have modified their notes as a result of implementing the practice. Highlighting the potentially beneficial and harmful effects that different types of documentation changes might have on the therapeutic relationship and on patient outcomes, we argue that more research is needed to investigate objective changes in notes as a result of patient access.

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    Does Patient Access to Clinical Notes Change Documentation?
  • 23. Blease, Charlotte
    et al.
    Torous, John
    Kharko, Anna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    DesRoches, Catherine M.
    Harcourt, Kendall
    O'Neill, Stephen
    Salmi, Liz
    Wachenheim, Deborah
    Hägglund, Maria
    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.
    Preparing Patients and Clinicians for Open Notes in Mental Health: Qualitative Inquiry of International Experts2021In: JMIR Mental Health, E-ISSN 2368-7959, Vol. 8, no 4, article id e27397Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: In a growing number of countries worldwide, clinicians are sharing mental health notes, including psychiatry and psychotherapy notes, with patients.

    OBJECTIVE: The aim of this study is to solicit the views of experts on provider policies and patient and clinician training or guidance in relation to open notes in mental health care.

    METHODS: In August 2020, we conducted a web-based survey of international experts on the practice of sharing mental health notes. Experts were identified as informaticians, clinicians, chief medical information officers, patients, and patient advocates who have extensive research knowledge about or experience of providing access to or having access to mental health notes. This study undertook a qualitative descriptive analysis of experts' written responses and opinions (comments) to open-ended questions on training clinicians, patient guidance, and suggested policy regulations.

    RESULTS: A total of 70 of 92 (76%) experts from 6 countries responded. We identified four major themes related to opening mental health notes to patients: the need for clarity about provider policies on exemptions, providing patients with basic information about open notes, clinician training in writing mental health notes, and managing patient-clinician disagreement about mental health notes.

    CONCLUSIONS: This study provides timely information on policy and training recommendations derived from a wide range of international experts on how to prepare clinicians and patients for open notes in mental health. The results of this study point to the need for further refinement of exemption policies in relation to sharing mental health notes, guidance for patients, and curricular changes for students and clinicians as well as improvements aimed at enhancing patient and clinician-friendly portal design.

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  • 24.
    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.
    Future treatment and community service models must consider complex needs of families of increasing number of children receiving home mechanical ventilation2020In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 109, no 9, p. 1703-1705Article in journal (Other academic)
  • 25.
    Boman, Krister K.
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare. Karolinska Inst, Dept Womens & Childrens Hlth, Stockholm, Sweden.
    Hörnquist, Lina
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health. Karolinska Inst, Dept Womens & Childrens Hlth, Stockholm, Sweden.
    Björlin, Amelie
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health. Karolinska Inst, Dept Womens & Childrens Hlth, Stockholm, Sweden.
    Coping in the Shadow of Cancer: A Pilot Study Investigating and Evaluating a Supervised Group Intervention Model for Psychosocial Rehabilitation2018In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 27, p. 158-158Article in journal (Other academic)
  • 26.
    Brantnell, Anders
    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. Uppsala University, Disciplinary Domain of Science and Technology, Technology, Department of Civil and Industrial Engineering, Industrial Engineering and Management.
    Baraldi, Enrico
    Uppsala University, Disciplinary Domain of Science and Technology, Technology, Department of Civil and Industrial Engineering, Industrial Engineering and Management.
    Following unique logics despite institutional complexity: An inductive study of academic inventors and institutional logics2020In: European Management Journal, ISSN 0263-2373, E-ISSN 1873-5681, Vol. 38, no 5, p. 684-697Article in journal (Refereed)
    Abstract [en]

    This paper examines how institutional complexity, due to the availability of multiple logics, influences the behavior of academic inventors during an innovation process. Based on four case studies of medical technology innovations, this paper identifies three logics influencing academic inventors’ behavior: academic, market, and care logics. We identify several patterns that characterize the practices of academic inventors in a context with multiple institutional logics. Despite the availability of multiple logics, we observe a strong pattern of academic inventors predominantly following the market or the care logic. As for the influence of multiple logics, we find very limited interaction between logics (i.e., reinforcing, complementary and conflicting interaction), with the prevalent pattern being “no interaction” between institutional logics. Thus, instead of following several logics, academic inventors’ specific practices are mostly guided by a “unique” logic. This influence of logics leads to a clear pattern of “dominant” influence on behavior, reflected in individual strategies of “entrenching,” that is, a strategy based on building one’s behavior on a “unique” logic. However, the same available logics can also generate "aligned" influence, entailing behavior guided by several logics. But this occurs only if the academic inventor faces uncertainty regarding the exploitation of the intellectual property. With these findings, we add to the ongoing discussion concerning institutional complexity and individual behavior by elucidating in detail how institutional complexity can entail behavior guided by “unique” logics.

  • 27.
    Brantnell, Anders
    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.
    Baraldi, Enrico
    Uppsala University, Disciplinary Domain of Science and Technology, Technology, Department of Engineering Sciences, Industrial Engineering & Management.
    The roles of academic inventors in medical innovation processes: Exploring the influence of IPR ownership and IP nature2020In: International Journal of Innovation Management, ISSN 1363-9196, E-ISSN 1757-5877, Vol. 24, no 5, article id 2050045Article in journal (Refereed)
    Abstract [en]

    This paper analyses four medical innovation processes originating from Stanford and Uppsala universities with the purpose of understanding how intellectual property rights (IPR) ownership and intellectual property (IP) nature influence the behaviour of academic inventors. We analyse this behaviour through the roles enacted and evaluate the requirements the roles pose by developing a method to assess the requirements of individual roles, which we label as role intensity. We find that both IPR ownership and IP nature can influence the academic inventors’ roles and role intensities. In contrast to assumptions in research and policy, we find that IPR ownership does not influence the roles and role intensities in a remarkable way. We also find support that research and policy should distinguish between patentable and non-patentable inventions in the field of medical invention as these two types of IP nature are associated with different roles and role intensities. These findings contribute to the literature on commercialisation of science and innovation management by demonstrating the importance of IP nature in influencing the roles of inventors. Managerial and policy implications are provided.

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  • 28.
    Brantnell, Anders
    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.
    Baraldi, Enrico
    Uppsala University, Disciplinary Domain of Science and Technology, Technology, Department of Engineering Sciences, Industrial Engineering & Management.
    van Achterberg, Theo
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health. Katholieke Univ Leuven, Dept Publ Hlth & Primary Care, Acad Ctr Nursing & Midwifery, Leuven, Belgium; Radboud Univ Nijmegen, Med Ctr, Sci Ctr Qual Healthcare, Radboud Inst Hlth Sci, Nijmegen, Netherlands.
    An inductive exploration of the implementation knowledge of research funders2019In: Health Research Policy and Systems, ISSN 1478-4505, E-ISSN 1478-4505, Vol. 17, article id 67Article in journal (Refereed)
    Abstract [en]

    Background: Healthcare research funders may undertake various roles to facilitate implementation of research findings. Their ability to enact such roles depends on several factors, knowledge of implementation being one essential requirement. However, previous studies do not assess the type or level of knowledge about implementation that research funders possess. This paper therefore presents findings from a qualitative, inductive study of the implementation knowledge of research funders. Three aspects of this knowledge are explored, namely how research funders define implementation, their level of self-assessed implementation knowledge and the factors influencing their self-assessment of implementation knowledge.

    Methods: Research funders (n = 18) were purposefully selected from a sample of research funding organisations in Sweden (n = 10). In-depth semi-structured interviews were conducted, recorded and transcribed verbatim. An inductive method using a systematic coding procedure was employed to derive the findings.

    Results: The research funders defined implementation as either an outcome or a process, with the majority believing that implementation of healthcare research results demands a process, although its complexity varied in the research funders’ view. They perceived their own level of implementation knowledge as either limited or substantial, with a majority regarding it as limited. Clinical research experience, clinical experience and task relevance were singled out as the clearest factors affecting the self-assessment of their own implementation knowledge.

    Conclusions: This study, the first to focus on implementation knowledge of research funders, demonstrates that they are a category of policy-makers who may possess knowledge, based on their previous professional experience, that is comparable to some important findings from implementation research. Consequently, the findings not only pinpoint the relevance of professional experience, but also reveal a lack of awareness and knowledge of the results of implementation research among research funders in charge of healthcare research.

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  • 29.
    Brantnell, Anders
    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. Uppsala University, Disciplinary Domain of Science and Technology, Technology, Department of Civil and Industrial Engineering, Industrial Engineering and Management.
    Woodford, Joanne
    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.
    Baraldi, Enrico
    Uppsala University, Disciplinary Domain of Science and Technology, Technology, Department of Civil and Industrial Engineering, Industrial Engineering and Management.
    van Achterberg, Theo
    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.
    Views of Implementers and Nonimplementers of Internet-Administered Cognitive Behavioral Therapy for Depression and Anxiety: Survey of Primary Care Decision Makers in Sweden2020In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 22, no 8, article id e18033Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Internet-administered cognitive behavioral therapy (ICBT) has been demonstrated to be an effective intervention for adults with depression and/or anxiety and is recommended in national guidelines for provision within Swedish primary care. However, the number and type of organizations that have implemented ICBT within primary care in Sweden is currently unclear. Further, there is a lack of knowledge concerning barriers and facilitators to ICBT implementation.

    OBJECTIVE: The two primary objectives were to identify and describe primary care organizations providing ICBT in Sweden and compare decision makers' (ie, directors of primary care organizations) views on barriers and facilitators to implementation of ICBT among ICBT implementers (ie, organizations that offered ICBT) and nonimplementers (ie, organizations that did not offer ICBT).

    METHODS: An online survey based on a checklist for identifying barriers and facilitators to implementation was developed and made accessible to decision makers from all primary care organizations in Sweden. The survey consisted of background questions (eg, provision of ICBT and number of persons working with ICBT) and barriers and facilitators relating to the following categories: users, therapists, ICBT programs, organizations, and wider society.

    RESULTS: The participation rate was 35.75% (404/1130). The majority (250/404, 61.8%) of participants were health care center directors and had backgrounds in nursing. Altogether, 89.8% (363/404) of the participating organizations provided CBT. A minority (83/404, 20.5%) of organizations offered ICBT. Most professionals delivering ICBT were psychologists (67/83, 80%) and social workers (31/83, 37%). The majority (61/83, 73%) of organizations had 1 to 2 persons delivering ICBT interventions. The number of patients treated with ICBT during the last 12 months was 1 to 10 in 65% (54/83) of the organizations, ranging between 1 and 400 treated patients across the whole sample. There were 9 significant (P<.05) differences out of 37 possible between implementers and nonimplementers. For example, more implementers (48/51, 94%) than nonimplementers (107/139, 76.9%) perceived few technical problems (P<.001), and more implementers (53/77, 68%) than nonimplementers (103/215, 47.9%) considered that their organization has resources to offer ICBT programs (P<.001).

    CONCLUSIONS: Despite research demonstrating the effectiveness of ICBT for depression and anxiety and national guidelines recommending its use, ICBT is implemented in few primary care organizations in Sweden. Several interesting differences between implementers and nonimplementers were identified, which may help inform interventions focusing on facilitating the implementation of ICBT.

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  • 30.
    Butler, Stephen
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Family Medicine and Preventive Medicine.
    Eek, Daniel
    AstraZeneca R&D, Molndal, Sweden.
    Ring, Lena
    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.
    Gordon, Allan
    Wasser Pain Management Ctr, Mount Sinai Hospital, Toronto, Canada.
    Karlsten, Rolf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Anaesthesiology and Intensive Care.
    The utility/futility of medications for neuropathic pain: an observational study2019In: Scandinavian Journal of Pain, ISSN 1877-8860, E-ISSN 1877-8879, Vol. 19, no 2, p. 327-335Article in journal (Refereed)
    Abstract [en]

    Background and aims

    The RELIEF (Real Life) study by AstraZeneca was designed as an observational study to validate a series of Patient Reported Outcome (PRO) questionnaires in a mixed population of subjects with neuropathic pain (NP) coming from diabetes, neurology and primary care clinics. This article is an analysis of a subset of the information to include the medications used and the effects of pharmacological treatment over 6 months. The RELIEF study was performed during 2010–2013.

    Methods

    Subjects were recruited from various specialty clinics and one general practice clinic across Canada. The subjects were followed for a total of 2 years with repeated documentation of their status using 10 PROs. A total of 210 of the recruited subjects were entered into the data base and analyzed. Of these, 123 had examination-verified painful diabetic neuropathy (PDN) and 87 had examination-verified post-traumatic neuropathy (PTN). To evaluate the responsiveness of the PROs to change, several time points were included and this study focusses primarily on the first 6 months. Subjects also maintained a diary to document all medications, both for pain and other medical conditions, including all doses, start dates and stop dates, that could be correlated to changes in the PRO parameters.

    Results

    RELIEF was successful in being able to correlate the validity of the PROs and this data was used for further AstraZeneca Phase 1, 2, and 3 clinical trials of NP. To our surprise, there was very little change in pain and low levels of patient satisfaction with treatment during the trial. Approximately 15% of the subjects reported improvement, 8% worsening of pain, the remainder reported pain unchanged despite the use of multiple medications at multiple doses, alone or in combination with frequent changes of medications and doses over the study. Those taking predominantly NSAIDs (COX-inhibitors) did no worse than those taking the standard recommended medications against NP.

    Conclusions

    Since this is a real-life study, it reflects the clinical utility of a variety of internationally recommended medications for the treatment of NP. In positive clinical trials of these medications in selected "ideal" subjects, the effects are not overwhelming – 30% are 50% improved on average. This study shows that in the real world the results are not nearly as positive and reflects information from non-published negative clinical trials.

    Implications

    We still do not have very successful medications for NP. Patients probably differ in many respects from those subjects in clinical trials. This is not to negate the use of recommended medications for NP but an indication that success rates of treatment are likely to be worse than the data coming from those trials published by the pharmaceutical industry.

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  • 31. Bärkås, Annika
    et al.
    Scandurra, Isabella
    Hägglund, Maria
    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. Health Informatics Centre, Karolinska Institutet, Stockholm, Sweden.
    Analysis of Voluntary User Feedback of the Swedish National PAEHR Service2019In: MEDINFO 2019: Health and Wellbeing e-Networks for All, 2019, p. 1126-1130Conference paper (Refereed)
    Abstract [en]

    "Journalen" is a patient accessible electronic health record (PAEHR) and the national eHealth service for Sweden's citizens to gain access to their EHR. The Swedish national eHealth organization Inera, responsible for Journalen, created an inbox to receive voluntary user feedback about Journalen in order to improve the service from the user perspective. Based on voluntary user feedback via email. This study explored patients' experiences of using the national eHealth service and identified pros and cons. A mixed method content analysis was performed. In total, 1084 emails from 2016-2017 have been analyzed. 9 categories were identified, the most frequent ones related to questions about why some information was not accessible (due to regional differencies), feedback (including only positive or negative comments as well as constructive improvement suggestions), and emails about errors that user found in their record. These data can be successfully used to continuously improve an already implemented eHealth service.

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  • 32.
    Cajander, Åsa
    et al.
    Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computerized Image Analysis and Human-Computer Interaction. Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Division of Visual Information and Interaction.
    Hägglund, Maria
    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.
    Scandurra, Isabella
    Örebro University .
    Wolf, Axel
    University of Gothenburg .
    Personcentrering med journalåtkomst och andra e-hälsotjänster2020In: Medicinsk informatik, Liber, 2020Chapter in book (Other (popular science, discussion, etc.))
  • 33.
    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.
    Management of physical pain during induced second-trimester medical abortions: a cross-sectional study of methodological quality and recommendations in local clinical practice guidelines at Swedish hospitals2019In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 11, no 1, p. 111-118Article in journal (Refereed)
    Abstract [en]

    Aim: The aim was to assess the methodological quality and describe recommendations for pain management in local clinical practice guidelines about induced second‐trimester medical abortions at Swedish university and county hospitals.

    Methods: In 2017, Swedish university and county hospitals that provided abortion care in the second trimester of pregnancy were contacted (n = 29), and guidelines from 25 were received (university: n = 6, county: n = 19). Guideline quality was assessed according to two systematic instruments. Recommendations were systematically assessed regarding frequency and tools for pain measurement, prophylactic pharmacologic treatment, as needed pharmacologic treatment and nonpharmacologic treatment.

    Results: Overall methodological quality was poor across both instruments, as the majority of the guidelines did not fulfil the investigated quality criteria. For pain measurements, no guideline recommended measurement frequency and four recommended specific measurement tools. Prophylactic pharmacologic treatment, described in 23 (92%) guidelines, included paracetamol (n = 23, 92%), anti‐inflammatory drugs (n = 23, 92%) and opioids (n = 18, 72%). As needed pharmacologic treatment, described in 23 (92%) guidelines, included anaesthetics (n = 21, 84%), opioids (n = 21, 84%) and paracetamol (n = 1, 4%). Recommendations for as needed anaesthetics included paracervical block (n = 21, 84%), epidural analgesia (n = 16, 64%) and inhalation of nitrous oxide (n = 5, 20%). Nonpharmacologic treatments were recommended in nine (36%) guidelines.

    Conclusions: The findings indicate that local clinical practice guidelines about induced second‐trimester medical abortions are of inadequate methodological quality and that a large majority lack recommendations concerning systematic pain measurements. Although most recommend prophylactic and as needed pharmacologic management, national inconsistencies exist in Sweden with regard to recommendations of epidural analgesia, nitrous oxide and nonpharmacologic methods. In Sweden, there is room for improvement in the development of these guidelines.

  • 34.
    Carlsson, Tommy
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Clinical Psychology in Healthcare.
    To Grasp the Unexpected: Information Following a Prenatal Diagnosis of Congenital Heart Defect in the Fetus2017Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The aim was to explore experiences and needs of information following a prenatal diagnosis of congenital heart defect, and to assess the quality of publicly available information websites about congenital heart defects. Study I was a qualitative interview study that explored experiences among 11 parents to prenatally diagnosed children. Respondents tried to grasp the facts today while reflecting on the future, and personal contact with medical specialists was valued. The analysis showed that the Web contained an overwhelming amount of information. Study II was a qualitative interview study that explored experiences among 26 females and males 5-15 weeks after a prenatal diagnosis. Respondents hunted for information in a confusing reality, with a need for information about various topics and methods for information delivery. Although high satisfaction with the specialist information was described, the information was considered overwhelming and complex. Supplemental information was sought via the Web. Insufficient information about induced abortions was described. Study III was a quantitative study that explored content and quality of 67 English websites about congenital heart defects. Few websites included information about prenatal aspects, such as pregnancy termination. The overall quality was poor, especially reliability and information about treatment choices. Study IV was a mixed methods study that explored the quality of 10 Swedish websites about congenital heart defects, from the perspectives of 9 assessors with personal experience of a prenatal diagnosis. Quantitative Likert scale assessments were followed by written open-ended questions and focus group discussions. Quantitative assessments represented unfulfilled quality criterion for treatment choices, and partially fulfilled quality criteria for appearance, details, relevance, suitability and overall quality. Websites had significantly different scores for all investigated quality criteria. Various issues were highlighted in the responses to the open-ended questions and during the discussions, including inappropriate advertisements, biased information, poor illustrations, complex language and poor trustworthiness. In conclusion, expectant parents faced with a prenatal diagnosis of congenital heart defect in the fetus try to grasp the unexpected, an attempt that involves difficulties in relation to information. These are present during the consultation with health professionals and when searching for web-based information. 

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  • 35.
    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 Univ, Box 5605, SE-11486 Stockholm, Sweden.
    Balbas, Banaz
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare. Ersta Skondal Bracke Univ Coll, Dept Hlth Care Sci, Stockholm, Sweden.
    Written narratives from immigrants following a prenatal diagnosis: qualitative exploratory study2019In: BMC Pregnancy and Childbirth, ISSN 1471-2393, E-ISSN 1471-2393, Vol. 19, article id 154Article in journal (Refereed)
    Abstract [en]

    Background

    Expectant parents often have optimistic expectations of the obstetric ultrasound examination and are unprepared for a diagnosis of foetal anomaly. Research that gives voice to the experiences of immigrants faced with a prenatal diagnosis is scarce, and there is a need for more exploratory research that provides insights into the experiences of these persons. The aim of this study was to explore narratives of experiences of immigrants with Arabic or Sorani interpreter needs when presented with a prenatal diagnosis of foetal anomaly.

    Methods

    A web-based tool with open-ended questions was distributed via Arabic and Kurdish non-profit associations and general women's associations in Sweden. Responses were received from six women and analysed with qualitative content analysis.

    Results

    The analysis resulted in three themes: (1) an unexpected hurricane of emotions, (2) trying to understand the situation though information in an unfamiliar language, and (3) being cared for in a country with accessible obstetric care and where induced abortion is legal.

    Conclusions

    Immigrant women described an unexpected personal tragedy when faced with a prenatal diagnosis of foetal anomaly, and emphasised the importance of respectful and empathic psychological support. Their experiences of insufficient and incomprehensible information call attention to the importance of tailored approaches and the use of adequate medical interpreting services. There is a need for more descriptive studies that investigate decision-making and preparedness for induced abortion among immigrants faced with a prenatal diagnosis.

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  • 36.
    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. The Swedish Red Cross University College, Huddinge, Sweden.
    Klarare, 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. Ersta Sköndal Bräcke University College, Stockholm, Sweden.
    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. Ersta Sköndal Bräcke University College, Stockholm, Sweden.
    Peer support among parents of children with congenital heart defects: A qualitative analysis of written responses submitted via an online survey2020In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 76, no 12, p. 3528-3536Article in journal (Refereed)
    Abstract [en]

    AIM: To explore experiences of peer support among parents of children with congenital heart defects.

    DESIGN: A study analysing written responses to open-ended questions about peer support, collected via an online survey distributed in Sweden.

    METHODS: Respondents were recruited during 3 months in 2018 by means of convenience sampling, through ads via the Swedish foundation for families with children who have heart defects and two closed Facebook groups for peer support. An online survey containing open-ended questions was distributed and responses were analysed with systematic text condensation.

    RESULTS: Peer support was grounded in a mutual understanding among parents and involved highly appreciated emotional support. Listening to the stories of peers meant an opportunity to gain useful insights about what life is like for parents of children with heart defects. Receiving and providing peer support was described as rewarding on a personal level. Negative aspects of peer support were also described, which sometimes led to psychological distress and withdrawal from peer support activities.

    CONCLUSION: Peer support is emotionally relieving and appreciated among parents of children with congenital heart defects, who consider providing the support a rewarding responsibility. While peer support activities may have considerable benefits for individuals, it may also lead to psychological distress for some.

    IMPACT: This study addressed peer support among parents of children with congenital heart defects. The main findings illustrate the potential impact peer support can have on individuals and calls attention to the experienced benefits related to peer support activities, while also providing some insights regarding potential negative aspects. The findings have relevance for nurses, midwives, and other health professionals working in settings providing care for these families.

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  • 37.
    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, 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.

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  • 38.
    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.
    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. Ersta Skondal Univ Coll, Dept Hlth Care Sci, SE-10061 Stockholm, Sweden.
    Emotional and cognitive experiences during the time of diagnosis and decision-making following a prenatal diagnosis: a qualitative study of males presented with congenital heart defect in the fetus carried by their pregnant partner2018In: BMC Pregnancy and Childbirth, ISSN 1471-2393, E-ISSN 1471-2393, Vol. 18, article id 26Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    Expectant fathers consider the second-trimester obstetric ultrasound examination as an important step towards parenthood, but are ill prepared for a detection of a fetal anomaly. Inductive research is scarce concerning their experiences and needs for support. Consequently, the aim of this study was to explore the emotional and cognitive experiences, during the time of diagnosis and decision-making, among males presented with congenital heart defect in the fetus carried by their pregnant partner.

    METHODS:

    Twelve expectant fathers were consecutively recruited through two tertiary referral centers for fetal cardiology in Sweden, after they had been presented with a prenatal diagnosis of congenital heart defect in the fetus carried by their pregnant partner. The respondents were interviewed via telephone, and the interviews were analyzed using inductive qualitative content analysis.

    RESULTS:

    The respondents experienced an intense emotional shock in connection with detection. However, they set their own needs aside to attend to the supportive needs of their pregnant partner, and stressed the importance of an informed joint decision regarding whether to continue or terminate the pregnancy. When terminating the pregnancy, they experienced a loss of a wanted child, an emotionally intense termination procedure, needs of support neglected by professionals, and worries about the risk of recurrence in future pregnancies. When continuing the pregnancy, they tried to keep a positive attitude about the coming birth, but were simultaneously worried about the postnatal situation.

    CONCLUSIONS:

    The findings illustrate the importance of inclusive care and adequate follow-up routines for both expectant parents following a prenatal diagnosis. This includes the initial emotional shock, the decisional process, and depending on decision reached, the termination or continuation of the pregnancy. Expectant fathers presented with a fetal anomaly need adequate follow-up routines to address worries about risk of recurrence in future pregnancies and worries about the postnatal situation.

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  • 39.
    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. The Swedish Red Cross University College, Huddinge, Sweden.
    Melander Marttala, Ulla
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Languages, Department of Scandinavian Languages.
    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. Ersta Sköndal Bräcke University College, Stockholm, Sweden.
    Being involved in research as a collaborator with experience of a prenatal diagnosis of congenital heart defect in the fetus: a qualitative study2020In: Research Involvement and Engagement, E-ISSN 2056-7529, Vol. 6, article id 10Article in journal (Refereed)
    Abstract [en]

    Background: An increasing number of research projects are now collaborating with persons who have lived experience of a specific health-related situation, such as a prenatal diagnosis of congenital heart defect. Such collaboration has the potential to provide valuable insights how to plan future studies, but little is known how these persons experience such involvement. The aim was to explore how persons with lived experience of a prenatal diagnosis perceived collaborating in a research project utilizing patient and public involvement to identify relevant research questions and develop suitable interventions.

    Methods: Persons with experience of a prenatal diagnosis of congenital heart defect in the fetus were interviewed after their participation in a yearlong collaborative research project (n = 9) aiming to explore relevant research questions and develop interventions for expectant parents with a recent prenatal diagnosis. Interviews were analyzed with qualitative content analysis.

    Results: Respondents acknowledged altruistic and personal value related to the collaboration. They valued the opportunity to contribute to future research so that the care of persons experiencing a prenatal diagnosis may be improved. Mixed feelings were described related to sharing and reliving experiences. While it had been emotionally difficult to relive a traumatic event, it also served as an opportunity to process experiences and psychologically adapt. Respondents with terminated pregnancies appreciated the possibility to meet peers, since it was difficult to find peers in everyday life and talk about their experiences with others.

    Conclusions: Researchers who plan to collaborate with persons who have experience of a prenatal diagnosis should be mindful of the potential associated emotional experiences. The appreciation related to meeting peers calls attention to the need for studies that explore peer support.

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    Being involved in research as a collaborator with experience of a prenatal diagnosis of congenital heart defect in the fetus: a qualitative study
  • 40.
    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.
    Melander, Marttala Ulla
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Languages, Department of Scandinavian Languages.
    Wadensten, Barbro
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Bergman, Gunnar
    Institutionen för Kvinnors och Barns Hälsa, Karolinska Institutet.
    Axelsson, Ove
    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), Obstetric research. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centrum för klinisk forskning i Sörmland (CKFD).
    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. Institutionen för Vårdvetenskap, Ersta Sköndal Bräcke Högskola.
    Quality of Patient Information Websites About Congenital Heart Defects: Mixed-Methods Study of Perspectives Among Individuals With Experience of a Prenatal Diagnosis2017In: Interactive Journal of Medical Research, E-ISSN 1929-073X, Vol. 6, no 2, article id e15Article in journal (Refereed)
    Abstract [en]

    Background: When a heart defect is prenatally diagnosed in the fetus, expectant parents experience a great need for information about various topics. After the diagnosis, the Web is used for supplemental information, and the scarcity of research calls attention to the need to explore patient information websites from the perspectives of the intended consumers.

    Objective: The overarching aim of this study was to explore the quality of Swedish patient information websites about congenital heart defects, from the perspectives of individuals with experience of a prenatal diagnosis of congenital heart defect in the fetus.

    Methods: This was a mixed-methods study of websites identified through systematic searches in the two most used Web-based search engines. Of the total 80 screened hits, 10 hits led to patient information websites about congenital heart defects. A quality assessment tool inspired by a previous study was used to evaluate each website’s appearance, details, relevance, suitability, information about treatment choices, and overall quality. Answers were given on a 5-point Likert scale, ranging from 1, representing the lowest score, to 5, representing the highest score. Each website was assessed individually by persons with experience of continued (n=4) and terminated (n=5) pregnancy following a prenatal diagnosis. Assessments were analyzed with Kendall’s coefficient of concordance W, Mann-Whitney U test, Friedman’s test, and a Wilcoxon-Nemenyi-McDonald-Thompson test. In addition, each assessor submitted written responses to open-ended questions in the quality assessment tool, and two joint focus group discussions were conducted with each group of assessors. The qualitative data were analyzed with inductive manifest content analysis.

    Results: Assessments represented a low score (median=2.0) for treatment choices and moderate scores (median=3.0) for appearance, details, relevance, suitability, and overall quality. No website had a median of the highest achievable score for any of the questions in the quality assessment tool. Medians of the lowest achievable score were found in questions about treatment choices (n=4 websites), details (n=2 websites), suitability (n=1 website), and overall quality (n=1 website). Websites had significantly different scores for appearance (P=.01), details (P<.001), relevance (P<.001), suitability (P<.001), treatment choices (P=.04), and overall quality (P<.001). The content analysis of the qualitative data generated six categories: (1) advertisements, (2) comprehensiveness, (3) design, (4) illustrations and pictures, (5) language, and (6) trustworthiness. Various issues with the included websites were highlighted, including the use of inappropriate advertisements, biased information, poor illustrations, complex language, and poor trustworthiness.

    Conclusions: From the perspectives of the intended consumers, patient information websites about congenital heart defects are, to a large extent, inadequate tools for supplemental information following a prenatal diagnosis. Health professionals should initiate discussions with patients about their intentions to use the Web, inform them about the varied quality in the Web-based landscape, and offer recommendations for appropriate Web-based sources.

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  • 41.
    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.
    Starke, Veronica
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics. 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. Ersta Skondal Bracke Univ Coll, Dept Hlth Care Sci, Stockholm, Sweden..
    The emotional process from diagnosis to birth following a prenatal diagnosis of fetal anomaly: A qualitative study of messages in online discussion boards2017In: Midwifery, ISSN 0266-6138, E-ISSN 1532-3099, Vol. 48, p. 53-59Article in journal (Refereed)
    Abstract [en]

    Objective: to explore written statements found in online discussion boards where parents currently expecting, or with previous experience of expecting, a child with a prenatally diagnosed congenital anomaly communicate about their emotional process from diagnosis to birth.

    Design: cross-sectional qualitative study of messages in public online discussion boards.

    Setting: Swedish public discussion boards about reproductive subjects.

    Sample: ten pregnant women and eight parents (of children with prenatal diagnoses) who had written 852 messages in five threads in Swedish online discussion boards identified via systematic searches.

    Measurements and findings: three phases were identified in the process of moving from the diagnosis to the birth: shock, existential crisis, and life remodeling. The people posting message (‘posters’) moved from initial shock to existential crisis and, lastly, a phase of remodeling life later in the pregnancy. During the pregnancy, considerable worries about both antenatal and postnatal aspects were expressed. To cope with their situation, the posters distanced themselves from the diagnoses, vented their feelings, sought control, and obtained practical support from friends and relatives.

    Key conclusions: expectant parents faced with a prenatal diagnosis move from initial shock to a phase of life remodeling and acceptance. Burdened with considerable worries, expectant parents cope with their situation through informational, emotional, and instrumental support from health professionals, family, friends, and peers.

    Implications for practice: health professionals should make sure that expectant parents feel involved in planning their children's postnatal care, that they are offered sufficient information, and that they have access to emotional and instrumental support structures. 

  • 42.
    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 Univ Coll, Stockholm, Sweden.;Swedish Red Cross Univ Coll, Huddinge, Sweden..
    Ulfsdottir, Hanna
    Sophiahemmet Univ Coll, Stockholm, Sweden.;Karolinska Univ Hosp, PO Pregnancy & Birth, Stockholm, Sweden..
    Waterbirth in low-risk pregnancy: An exploration of women's experiences2020In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 76, no 5, p. 1221-1231Article in journal (Refereed)
    Abstract [en]

    Aims To explore retrospective descriptions about benefits, negative experiences and preparatory information related to waterbirths. Design A qualitative study. Methods Women who gave birth in water with healthy pregnancies and low-risk births were consecutively recruited between December 2015-October 2018 from two birthing units in Sweden. All who gave birth in water during the recruitment period were included (N = 155) and 111 responded to the survey. Women were emailed a web-based survey six weeks postpartum. Open-ended questions were analysed with qualitative content analysis. Results Two themes were identified related to benefits: (a) physical benefits: the water eases labour progression while offering buoyancy and pain relief; and (b) psychological benefits: improved relaxation and control in a demedicalized and safe setting. Two themes were identified related to negative experiences: (a) equipment-related issues due to the construction of the tub and issues related to being immersed in water; and (b) fears and worries related to waterbirth. In regard to preparatory information, respondents reported a lack of general and specific information related to waterbirths, even after they contacted birthing units to ask questions. Supplemental web-based information was sought, but the trustworthiness of these sources was questioned and a need for trustworthy web-based information was articulated. Conclusion Women who give birth in water experience physical and psychological benefits, but need better equipment and sufficient information. There is room for improvement with regard to prenatal and intrapartum care of women who give birth in water. Impact Judging from women's recounts, midwives and nurses should continue advocating waterbirth in low-risk pregnancies. The lack of adequate equipment in Swedish birthing units articulated by women challenge current routines and resources. The findings illustrate unfulfilled needs for preparatory information about waterbirth, further strengthening that midwives should discuss the possibility of waterbirth when meeting expectant parents in the antenatal setting.

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  • 43.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women's and children's health), Clinical Psychology in Healthcare.
    Carlbring, Per
    Wikman, Anna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women's and children's health), Clinical Psychology in Healthcare.
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women's and children's health), Clinical Psychology in Healthcare.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women's and children's health), Clinical Psychology in Healthcare.
    Twelve-Month Follow-Up of a Randomized Controlled Trial of Internet-Based Guided Self-Help for Parents of Children on Cancer Treatment2017In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 19, no 7, article id e273Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: A substantial proportion of parents of children on cancer treatment report psychological distress such as symptoms of post-traumatic stress (PTSS), depression, and anxiety. During their child's treatment many parents also experience an economic burden.

    OBJECTIVE: The aim of this study was to evaluate the long-term efficacy of Internet-based guided self-help for parents of children on cancer treatment.

    METHODS: This study was a parallel randomized controlled trial comparing a 10-week Internet-based guided self-help program, including weekly support from a therapist via encrypted email, with a wait-list control condition. The intervention was based on cognitive behavior therapy (CBT) and focused on psychoeducation and skills to cope with difficult thoughts and feelings. Primary outcome was self-reported PTSS. Secondary outcomes were self-reported symptoms of depression, anxiety, health care consumption, and sick leave during the past month. Outcomes were assessed pre- and postintervention and at 12-month follow-up. Parents of children on cancer treatment were invited by health care personnel at pediatric oncology centers, and parents meeting the modified symptom criteria on the PCL-C were included in the study. Self-report assessments were provided on the Web.

    RESULTS: A total of 58 parents of children on cancer treatment (median months since diagnosis=3) were included in the study (intervention n=31 and control n=27). A total of 18 participants completed the intervention, and 16 participants in each group participated in the 12-month follow-up. Intention-to-treat analyses revealed significant effects in favor of the intervention on the primary outcome PTSS, with large between-group effect sizes at postassessment (d=0.89; 95% CI 0.35-1.43) and at 12-month follow-up (d=0.78; 95% CI 0.25-1.32). Significant effects in favor of the intervention on the secondary outcomes depression and anxiety were also observed. However, there was no evidence for intervention efficacy on health care consumption or sick leave.

    CONCLUSIONS: Using the Internet to provide psychological interventions shows promise as an effective mode of delivery for parents reporting an increased level of PTSS and who consider Internet-based interventions as a viable option. Future research should corroborate these findings and also develop and evaluate interventions and policies that may help ameliorate the economic burden that parents may face during their child's treatment for cancer.

  • 44.
    Coumoundouros, Chelsea
    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.
    Mårtensson, Erika
    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. Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Arts, Centre for Gender Research.
    Ferraris, Giulia
    Department of Health Psychology, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands.
    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.
    Sanderman, Robbert
    Department of Psychology, Health and Technology, University of Twente, Enschede, the Netherlands; Department of Health Psychology, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands.
    Woodford, Joanne
    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.
    Implementation of e-mental health interventions for informal caregivers of adults with chronic diseases: a systematic review2020In: Implementation Science, E-ISSN 1748-5908, Vol. 15, p. P10-P10, article id 105Article in journal (Refereed)
    Abstract [en]

    Background:

    Many informal caregivers experience mental health difficulties. E-mental health interventions offer effective and accessible mental health support; however, these interventions are often not implemented. To explore implementation of e-mental health interventions for informal caregivers, a systematic review was conducted to (1) examine implementation barriers and facilitators, and (2) identify implementation and intervention features associated with intervention effectiveness.

    Method:

    Multiple electronic databases were searched for studies published since 2007 reporting on the implementation and/or effectiveness of e-mental health interventions for informal caregivers of adults with chronic diseases. A thematic synthesis of data related to implementation will be used to identify implementation barriers and facilitators. A qualitative comparative analysis, using data from pragmatic randomized controlled trials, will be used to determine combinations of conditions related to an intervention’s implementation or program features, sufficient for intervention effectiveness.

    Results:

    Electronic database searches yielded 9248 unique records to undergo title/abstract screening. The literature screening process is currently underway to identify full-texts eligible for inclusion in the analysis. Preliminary findings will be presented. Implementation barriers and facilitators identified in the thematic synthesis will be presented. These barriers and facilitators will be linked to initial results from the qualitative comparative analysis, as barriers and facilitators may relate to conditions important for intervention effectiveness. Practical applications of these findings will be discussed. If a qualitative comparative analysis cannot be completed prior to the conference, pragmatic trials reporting on intervention effectiveness will be descriptively summarized and analysis plans discussed.

    Conclusions:

    This review will identify key factors to consider during implementation of e-mental health interventions for informal caregivers and present potential solutions to overcome implementation barriers. These findings can be used to inform intervention design and implementation strategies to facilitate the implementation of e-mental health services for informal caregivers.

    Acknowledgements:

    This work was supported by the European Union’s Horizon 2020 research and innovation program under the Marie-Sklodowska Curie grant agreement No 814072.

  • 45.
    Coumoundouros, Chelsea
    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.
    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.
    Sanderman, Robbert
    Department of Psychology, Health and Technology, University of Twente, Enschede, the Netherlands; Department of Health Psychology, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands.
    Woodford, Joanne
    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.
    Implementation of e-mental health interventions for informal caregivers of adults with chronic diseases: a protocol for a mixed-methods systematic review with a qualitative comparative analysis2020In: BMJ Open, E-ISSN 2044-6055, Vol. 10, no 6, article id e035406Article, review/survey (Refereed)
    Abstract [en]

    INTRODUCTION: Informal caregivers provide the majority of care to individuals with chronic health conditions, benefiting the care recipient and reducing use of formal care services. However, providing informal care negatively impacts the mental health of many caregivers. E-mental health interventions have emerged as a way to provide accessible mental healthcare to caregivers. Much attention has been given to reviewing the effectiveness and efficacy of such interventions, however, factors related to implementation have received less consideration. Therefore, this mixed-methods systematic review will aim to examine factors associated with the effectiveness and implementation of e-mental health interventions for caregivers.

    METHODS AND ANALYSIS: Eligible studies published since 1 January 2007 will be searched for in several electronic databases (CINAHL Plus with Full Text, the Cochrane Library, EMBASE, PsycINFO, PubMed and Web of Science), clinical trial registries and OpenGrey, with all screening steps conducted by two independent reviewers. Studies will be included if they focus on the implementation or effectiveness of e-mental health interventions designed for informal adult caregivers of adults with cancer, heart disease, stroke, diabetes, dementia or chronic obstructive pulmonary disease. Pragmatic randomised controlled trials quantitatively reporting on caregiver anxiety, depression, psychological distress or stress will be used for a qualitative comparative analysis to identify combinations of conditions that result in effective interventions. Qualitative and quantitative data on implementation of e-mental health interventions for caregivers will be integrated in a thematic synthesis to identify barriers and facilitators to implementation. These results will inform future development and implementation planning of e-mental health interventions for caregivers.

    ETHICS AND DISSEMINATION: Ethical approval is not required for this study as no primary data will be collected. Results will be disseminated in the form of a scientific publication and presentations at academic conferences and plain language summaries for various stakeholders.

    PROSPERO REGISTRATION NUMBER: CRD42020155727.

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  • 46. Davoody, Nadia
    et al.
    Koch, Sabine
    Krakau, Ingvar
    Hägglund, Maria
    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.
    Accessing and sharing health information for post-discharge stroke care through a national health information exchange platform: a case study2019In: BMC Medical Informatics and Decision Making, E-ISSN 1472-6947, Vol. 19, no 1, article id 95Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    Patients and citizens need access to their health information to get a retrospective as well as a prospective view on their care and rehabilitation processes. However, patients' health information is stored in several health information systems and interoperability problems often hamper accessibility. In Sweden a national health information exchange (HIE) platform has been developed that enables information exchange between different health information systems. The aim of this study is to explore the opportunities and limitations of accessing and interacting with important health information through the Swedish national HIE platform.

    METHODS:

    A single case study approach was used for this study as an in-depth understanding of the subject was needed. A fictive patient case with a pseudo-name was created based on an interview with a stroke coordinator in Stockholm County. Information access through the national health information exchange platform and available service contracts and application programming interfaces were studied using different scenarios.

    RESULTS:

    Based on the scenarios created in this study, patients would be able to access some health related information from their electronic health records using the national health information exchange platform. However, there is necessary information which is not retrievable as it is either stored in electronic health records and eHealth services which are not connected to the national health information exchange platform or there is no service contract developed for these types of information. In addition, patients are not able to share information with healthcare professionals.

    CONCLUSION:

    The national Swedish HIE platform provides the building blocks needed to allow patients online access to their health information in a fragmented and distributed health system. However, more complex interaction scenarios allowing patients to communicate with their health care providers or to update their health related information are not yet supported. Therefore it is of great importance to involve patients throughout the design and evaluation of eHealth services on both national and local levels to ensure that their needs for interoperability and information exchange are met.

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  • 47.
    Dorsey, E. Ray
    et al.
    Univ Rochester, Med Ctr, Ctr Hlth Technol, Rochester, NY 14642 USA.;Univ Rochester, Med Ctr, Dept Neurol, Rochester, NY 14642 USA..
    Omberg, Larsson
    Sage Bionetworks, Seattle, WA USA..
    Waddell, Emma
    Univ Rochester, Med Ctr, Ctr Hlth Technol, Rochester, NY 14642 USA..
    Adams, Jamie L.
    Univ Rochester, Med Ctr, Ctr Hlth Technol, Rochester, NY 14642 USA.;Univ Rochester, Med Ctr, Dept Neurol, Rochester, NY 14642 USA..
    Adams, Roy
    Johns Hopkins Univ, Machine Learning AI & Healthcare Lab, Baltimore, MD USA..
    Ali, Mohammad Rafayet
    Univ Rochester, Dept Comp Sci, Rochester, NY 14627 USA..
    Amodeo, Katherine
    Univ Rochester, Med Ctr, Dept Neurol, Rochester, NY 14642 USA..
    Arky, Abigail
    Univ Rochester, Med Ctr, Ctr Hlth Technol, Rochester, NY 14642 USA..
    Augustine, Erika F.
    Univ Rochester, Med Ctr, Ctr Hlth Technol, Rochester, NY 14642 USA.;Univ Rochester, Med Ctr, Dept Neurol, Rochester, NY 14642 USA..
    Dinesh, Karthik
    Univ Rochester, Dept Elect & Comp Sci, Rochester, NY USA..
    Hoque, Mohammed Ehsan
    Univ Rochester, Dept Comp Sci, Rochester, NY 14627 USA..
    Glidden, Alistair M.
    Univ Rochester, Med Ctr, Ctr Hlth Technol, Rochester, NY 14642 USA..
    Jensen-Roberts, Stella
    Univ Rochester, Med Ctr, Ctr Hlth Technol, Rochester, NY 14642 USA..
    Kabelac, Zachary
    MIT, Dept Comp Sci & Artificial Intelligence, 77 Massachusetts Ave, Cambridge, MA 02139 USA..
    Katabi, Dina
    MIT, Dept Comp Sci & Artificial Intelligence, 77 Massachusetts Ave, Cambridge, MA 02139 USA..
    Kieburtz, Karl
    Univ Rochester, Med Ctr, Ctr Hlth Technol, Rochester, NY 14642 USA.;Univ Rochester, Med Ctr, Dept Neurol, Rochester, NY 14642 USA..
    Kinel, Daniel R.
    Univ Rochester, Med Ctr, Ctr Hlth Technol, Rochester, NY 14642 USA.;Univ Rochester, Med Ctr, Dept Neurol, Rochester, NY 14642 USA..
    Little, Max A.
    Univ Birmingham, Sch Comp Sci, Birmingham, W Midlands, England.;MIT, 77 Massachusetts Ave, Cambridge, MA 02139 USA..
    Lizarraga, Karlo J.
    Univ Rochester, Med Ctr, Ctr Hlth Technol, Rochester, NY 14642 USA.;Univ Rochester, Med Ctr, Dept Neurol, Rochester, NY 14642 USA..
    Myers, Taylor
    Univ Rochester, Med Ctr, Ctr Hlth Technol, Rochester, NY 14642 USA..
    Riggare, Sara
    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.
    Rosero, Spencer Z.
    Univ Rochester, Dept Med, Rochester, NY USA..
    Saria, Suchi
    Johns Hopkins Univ, Machine Learning AI & Healthcare Lab, Baltimore, MD USA.;Johns Hopkins Univ, Dept Comp Sci Stat & Hlth Policy, Baltimore, MD USA..
    Schifitto, Giovanni
    Univ Rochester, Med Ctr, Dept Neurol, Rochester, NY 14642 USA..
    Schneider, Ruth B.
    Univ Rochester, Med Ctr, Ctr Hlth Technol, Rochester, NY 14642 USA.;Univ Rochester, Med Ctr, Dept Neurol, Rochester, NY 14642 USA..
    Sharma, Gaurav
    Univ Rochester, Dept Elect & Comp Sci, Rochester, NY USA.;Univ Rochester, Med Ctr, Dept Biostat & Computat Biol, Rochester, NY 14642 USA..
    Shoulson, Ira
    Univ Rochester, Med Ctr, Ctr Hlth Technol, Rochester, NY 14642 USA.;Univ Rochester, Med Ctr, Dept Neurol, Rochester, NY 14642 USA.;Grey Matter Technol, Sarasota, FL USA..
    Stevenson, E. Anna
    Univ Rochester, Med Ctr, Ctr Hlth Technol, Rochester, NY 14642 USA..
    Tarolli, Christopher G.
    Univ Rochester, Med Ctr, Ctr Hlth Technol, Rochester, NY 14642 USA.;Univ Rochester, Med Ctr, Dept Neurol, Rochester, NY 14642 USA..
    Luo, Jiebo
    Univ Rochester, Dept Comp Sci, Rochester, NY 14627 USA..
    McDermott, Michael P.
    Univ Rochester, Med Ctr, Ctr Hlth Technol, Rochester, NY 14642 USA.;Univ Rochester, Med Ctr, Dept Biostat & Computat Biol, Rochester, NY 14642 USA..
    Deep Phenotyping of Parkinson's Disease2020In: Journal of Parkinson's Disease, ISSN 1877-7171, E-ISSN 1877-718X, Vol. 10, no 3, p. 855-873Article, review/survey (Refereed)
    Abstract [en]

    Phenotype is the set of observable traits of an organism or condition. While advances in genetics, imaging, and molecular biology have improved our understanding of the underlying biology of Parkinson's disease (PD), clinical pheno-typing of PD still relies primarily on history and physical examination. These subjective, episodic, categorical assessments are valuable for diagnosis and care but have left gaps in our understanding of the PD phenotype. Sensors can provide objective, continuous, real-world data about the PD clinical phenotype, increase our knowledge of its pathology, enhance evaluation of therapies, and ultimately, improve patient care. In this paper, we explore the concept of deep phenotyping-the comprehensive assessment of a condition using multiple clinical, biological, genetic, imaging, and sensor-based tools-for PD. We discuss the rationale for, outline current approaches to, identify benefits and limitations of, and consider future directions for deep clinical phenotyping.

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  • 48.
    Ekman, Urban
    et al.
    Karolinska Inst, Div Clin Geriatr, Dept Neurobiol Care Sci & Soc, Stockholm, Sweden;Karolinska Univ Hosp, Theme Aging, Huddinge, Sweden.
    Ferreira, Daniel
    Karolinska Inst, Div Clin Geriatr, Dept Neurobiol Care Sci & Soc, Stockholm, Sweden.
    Muehlboeck, J-Sebastian
    Karolinska Inst, Div Clin Geriatr, Dept Neurobiol Care Sci & Soc, Stockholm, Sweden.
    Wallert, John
    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, Div Clin Geriatr, Dept Neurobiol Care Sci & Soc, Stockholm, Sweden.
    Rennie, Anna
    Karolinska Inst, Div Clin Geriatr, Dept Neurobiol Care Sci & Soc, Stockholm, Sweden.
    Eriksdotter, Maria
    Karolinska Inst, Div Clin Geriatr, Dept Neurobiol Care Sci & Soc, Stockholm, Sweden;Karolinska Univ Hosp, Theme Aging, Huddinge, Sweden.
    Wahlund, Lars-Olof
    Karolinska Inst, Div Clin Geriatr, Dept Neurobiol Care Sci & Soc, Stockholm, Sweden.
    Westman, Eric
    Karolinska Inst, Div Clin Geriatr, Dept Neurobiol Care Sci & Soc, Stockholm, Sweden;Kings Coll London, Inst Psychiat Psychol & Neurosci, Ctr Neuroimaging Sci, Dept Neuroimaging, London, England.
    The MemClin project: a prospective multi memory clinics study targeting early stages of cognitive impairment2020In: BMC Geriatrics, ISSN 1471-2318, E-ISSN 1471-2318, Vol. 20, article id 93Article in journal (Refereed)
    Abstract [en]

    Background: There remains a lack of large-scale clinical studies of cognitive impairment that aim to increase diagnostic and prognostic accuracy as well as validate previous research findings. The MemClin project will amass large quantities of cross-disciplinary data allowing for the construction of robust models to improve diagnostic accuracy, expand our knowledge on differential diagnostics, strengthen longitudinal prognosis, and harmonise examination protocols across centres. The current article describes the Memory Clinic (MemClin) project's study-design, materials and methods, and patient characteristics. In addition, we present preliminary descriptive data from the ongoing data collection.

    Methods: Nine out of ten memory clinics in the greater Stockholm area, which largely use the same examination methods, are included. The data collection of patients with different stages of cognitive impairment and dementia is coordinated centrally allowing for efficient and secure large-scale database construction. The MemClin project rest directly on the memory clinics examinations with cognitive measures, health parameters, and biomarkers.

    Results: Currently, the MemClin project has informed consent from 1543 patients. Herein, we present preliminary data from 835 patients with confirmed cognitive diagnosis and neuropsychological test data available. Of those, 239 had dementia, 487 mild cognitive impairment (MCI), and 104 subjective cognitive impairment (SCI). In addition, we present descriptive data on visual ratings of brain atrophy and cerebrospinal fluid markers.

    Conclusions: Based on our current progress and preliminary data, the MemClin project has a high potential to provide a large-scale database of 1200-1500 new patients annually. This coordinated data collection will allow for the construction of improved diagnostic and prognostic models for neurodegenerative disorders and other cognitive conditions in their naturalistic setting.

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  • 49.
    Elf, Kristin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Clinical Neurophysiology.
    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.
    Santeliz Rivas, Liliana
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Neurosurgery.
    Widnersson, Emma
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Neurosurgery.
    Nyholm, Lena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Neurosurgery.
    Electroencephalographic Patterns During Common Nursing Interventions in Neurointensive Care: A Descriptive Pilot Study2019In: Journal of Neuroscience Nursing, ISSN 0888-0395, E-ISSN 1945-2810, Vol. 51, no 1, p. 10-15Article in journal (Refereed)
    Abstract [en]

    Background: Many patients with neurological insults requiring neurointensive care have an increased risk of acute symptomatic seizures. Various nursing interventions performed when caring for these patients may elicitpathological cerebral electrical activity including seizures and stimulus-induced rhythmic, periodic, or ictal discharges (SIRPIDs). The aim was to explore changes in electroencephalogram (EEG) due to neurointensive care nursing interventions.

    Methods: A convenience sample was recruited between November 2015 and April 2016, consisting of 12 adult patients with impaired consciousness due to a neurosurgical condition. Continuous EEG and simultaneous video recordings of nursing interventions were collected 48 continuous hours for each patient. Two analysts categorized the video recordings for common nursing interventions, and a neurophysiologist analyzed the EEGs.

    Results: In total, 976 nursing interventions were observed. Epileptiform activity was observed in 4 patients (33%), during 1 nursing intervention episode each (0.4%). The 4 observed episodes of epileptiform activity occurred during multiple simultaneous nursing interventions (n = 3) and hygienic interventions (n = 1). Stimulus-induced rhythmic, periodic, or ictal discharges were observed in 1patient (8%), in 1 single nursing intervention (0.1%). The observed SIRPID soccurred during repositioning of thepatient. All patients had muscle artifacts, during 353 nursing interventions (36.3%). The duration of nursing interventions was longer for those with simultaneous muscle artifacts (median, 116 seconds) than those without muscle artifacts, epileptiform activity, or SIRPIDs (median, 89.0 seconds). With regard to epileptiform activityand SIRPIDs, the median durations of the nursing interventions were 1158 and 289 seconds, respectively.

    Conclusion: The results of this pilot study indicate that muscle artifacts seem prevalent during nursing interventions and may be a sign of stress. Nurses should be aware of the risk of inducing stress by performing regular nursing interventions in daily practice, consider shorter or fewer interventions at a time in sensitive patients, and administer sedation accordingly. Considering that this was a pilot study, more research that investigates correlations between EEG patterns and nursing interventions in larger samples is needed.

  • 50.
    Eriksson, Catrin
    et al.
    Sophiahemmet Univ, Stockholm, Sweden.
    Skinstad, Matilda
    Sophiahemmet Univ, Stockholm, Sweden.
    Georgsson, Susanne
    Swedish Red Cross Univ Coll, Huddinge, Sweden;Karolinska Inst, Dept Clin Sci Intervent & Technol, 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, Stockholm, Sweden;Swedish Red Cross Univ Coll, Huddinge, Sweden.
    Quality of websites about long-acting reversible contraception: a descriptive cross-sectional study2019In: Reproductive Health, ISSN 1742-4755, E-ISSN 1742-4755, Vol. 16, no 1, article id 172Article in journal (Refereed)
    Abstract [en]

    Background Today, there are various short- and long-acting contraceptive alternatives available for those who wish to prevent unintended pregnancy. Long-acting reversible contraception are considered effective methods with a high user satisfaction. High-quality information about contraception is essential in order to empower individuals to reach informed decisions based on sufficient knowledge. Use of the Web for information about contraception is widespread, and there is a risk that those who use it for this purpose could come in contact with sources of low quality. Objective The overarching aim was to investigate the quality of websites about long-acting reversible contraception. Methods Swedish client-oriented websites were identified through searches in Google (n = 46 included websites). Reliability and information about long-acting reversible contraceptive choices were assessed by two assessors with the DISCERN instrument, transparency was analyzed with the Journal of the American Medical Association benchmarks, completeness was assessed with inductive content analysis and readability was analyzed with Readability Index. Results The mean DISCERN was 44.1/80 (SD 7.7) for total score, 19.7/40 (SD 3.7) for reliability, 22.1/35 (SD 4.1) for information about long-acting reversible contraceptive choices, and 2.3/5 (SD 1.1) for overall quality. A majority of the included websites had low quality with regard to what sources were used to compile the information (n = 41/46, 89%), when the information was produced (n = 40/46, 87%), and if it provided additional sources of support and information (n = 30/46, 65%). Less than half of the websites adhered to any of the JAMA benchmarks. We identified 23 categories of comprehensiveness. The most frequent was contraceptive mechanism (n = 39/46, 85%) and the least frequent was when contraception may be initiated following an abortion (n = 3/46, 7%). The mean Readability Index was 42.5 (SD 6.3, Range 29-55) indicating moderate to difficult readability levels, corresponding to a grade level of 9. Conclusions The quality of client-oriented websites about long-acting reversible contraception is poor. There is an undeniable need to support and guide laypersons that intend to use web-based sources about contraceptive alternatives, so that they may reach informed decisions based on sufficient knowledge.

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