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  • 1.
    Ander, Malin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Grönqvist, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Cernvall, Martin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Engvall, Gunn
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    Hedström, Mariann
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    Lyhagen, Johan
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Statistics.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Development of health-related quality of life and symptoms of anxiety and depression among persons diagnosed with cancer during adolescence: a 10-year follow-up study2016In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 25, no 5, p. 582-589Article in journal (Refereed)
    Abstract [en]

    Objective: The main aim was to investigate the development of health-related quality of life (HRQOL) and symptoms of anxiety and depression in a cohort diagnosed with cancer during adolescence from shortly after up to 10 years after diagnosis.

    Methods: Participants (n = 61) completed the SF-36 and the HADS shortly; six, 12, and 18 months; and two, three, four, and 10 years (n = 28) after diagnosis. Polynomial change trajectories were used to model development.

    Results: Polynomial change trajectories showed an initial increase which abated over time into a decrease which abated over time for the SF-36 subscales Mental Health and Vitality; an initial decline which abated over time into an increase for HADS anxiety; and an initial decline which abated over time into an increase which abated over time for HADS depression. The SF-36 mental component summary showed no change from two to 10 years after diagnosis whereas the SF-36 physical component summary showed an increase from two years after diagnosis which declined over time. Ten years after diagnosis 29% reported possible anxiety.

    Conclusions: Development of HRQOL and symptoms of anxiety and depression appears to be nonlinear among persons diagnosed with cancer during adolescence. Well into permanent survivorship an increase in symptoms of anxiety is shown and approximately a third of the participants report possible anxiety. The findings indicate the need for: studies designed to pinpoint the times of highest psychological risk, clinical follow-up focusing on psychological problems, and development of effective psychological interventions for survivors of adolescent cancer

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  • 2.
    Ander, Malin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Norberg, Annika Lindahl
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Ljotsson, Brjann
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Identification of Cancer-related Psychological Suffering Experienced by Young People Diagnosed with Cancer During Adolescence and Development of a Psychological Treatment to Reduce This Suffering2015Conference paper (Refereed)
  • 3.
    Ander, Malin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Thorsell Cederberg, Jenny
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    Lindahl Norberg, Annika
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Losing your context - Exploration of emotional suffering after cancer during adolescence2016Conference paper (Refereed)
  • 4.
    Ander, Malin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    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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  • 5.
    Ander, Malin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Toft, Teolinda
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Norberg, Annika Lindahl
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    U-CARE: YoungCan-Development of an Internet-Based Self-Help Program of Psychosocial Support and Psychological Treatment2013Conference paper (Refereed)
  • 6.
    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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  • 7.
    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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  • 8.
    Aneblom, Gunilla
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Larsson, Margareta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Tydén, Tanja
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Women's voices about emergency contraceptive pills "over-the-counter": a Swedish perspective2002In: Contraception, ISSN 0010-7824, E-ISSN 1879-0518, Vol. 66, no 5, p. 339-343Article in journal (Refereed)
    Abstract [en]

    This study aimed to describe women’s experiences with the emergency contraceptive pill (ECP) as a prescription-free over-the-counter (OTC) product. Women (median age 24) who had bought ECP as an OTC product were interviewed in focus groups. Data were analyzed by content analysis. All participants appreciated the OTC availability. Timesaving aspects were seen as important benefits and pharmacies were seen as the right place to sell ECP. The media was the main source of information about OTC, probably due to the debates of the introduction of ECP as an OTC product in Sweden. All women discussed the mechanism of action. The women’s experiences of interacting with the pharmacists were both positive and negative. Inconsistencies in routines with regard to providing ECP and different attitudes toward use of ECP among the pharmacists, were identified. The women expected up-to-date information about ECP and the OTC availability from gynecologists and other health professionals.

  • 9.
    Blomberg, Oscar
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Svedin, Frida
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Brantnell, Anders
    Uppsala University, Disciplinary Domain of Science and Technology, Technology, Department of Civil and Industrial Engineering, Industrial Engineering and Management. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Farrand, Paul
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    von Essen, Louise
    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 Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Åberg, Anna Cristina
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Geriatrics. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Woodford, Joanne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Development of a self-help behavioural activation intervention INVOLVERA for people with dementia: A qualitative study2023Conference paper (Refereed)
  • 10.
    Blomberg, Oscar
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Svedin, Frida
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Farrand, Paul
    Clinical Education Development and Research (CEDAR), University of Exeter, Exeter, UK.
    Brantnell, Anders
    Uppsala University, Disciplinary Domain of Science and Technology, Technology, Department of Civil and Industrial Engineering, Industrial Engineering and Management. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Patriksson Karlsson, Johanna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Åberg, Anna Cristina
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical geriatrics.
    Woodford, Joanne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Adaptation of a guided low-intensity behavioral activation intervention for people with dementia in Sweden: a qualitative study exploring the needs and preferences of key stakeholders2024In: BMC Geriatrics, E-ISSN 1471-2318, Vol. 24, no 113Article in journal (Refereed)
    Abstract [en]

    Background

    Despite depression being prevalent in people with dementia, contributing to negative health outcomes and placing increased burden on individuals and family members, access to psychological interventions is limited. A potential solution is guided low-intensity behavioral activation, supported by informal caregivers and guided by healthcare professionals. However, it is necessary to adapt interventions to meet the needs and preferences of key stakeholders to enhance acceptability and relevance. Study objectives were to: (1) explore needs and preferences concerning the content and delivery model of the guided low-intensity behavioral activation intervention; and (2) adapt the intervention to ensure cultural appropriateness, relevancy, and acceptability to people with dementia and their caregivers in Sweden.

    Methods

    Semi-structured interviews and focus group discussions were conducted with key stakeholders, including healthcare professionals (n = 18), community stakeholders (n = 7), people with dementia (n = 8), and informal caregivers (n = 19). A draft of the written low-intensity behavioral activation intervention and a description of the proposed intervention delivery model were provided to participants. Open-ended questions explored the perceived relevance of the intervention, alongside needs and preferences concerning content and delivery. A manifest content analysis approach was adopted.

    Results

    Content analysis resulted in three categories: Content, Delivery procedures, and Illness trajectory. Results highlighted a need to consider the intervention Content via increased cultural adaptation to the Swedish context, and increasing the inclusiveness of intervention content. Delivery procedures were identified as needing to be flexible given the unpredictable nature of caring for people with dementia, with the provision of additional guidance to informal caregivers supporting the intervention. Illness trajectory was viewed as essential to consider, with the intervention regarded as suitable for those early in the dementia trajectory, alongside a need to reduce workbook text to minimize burden given dementia symptomology.

    Conclusions

    The intervention and proposed delivery model were generally well received by all stakeholders. We were able to identify key adaptations to enhance cultural appropriateness, relevancy, and acceptability for a currently neglected population. Results will inform a feasibility study to explore the feasibility and acceptability of the intervention and study procedures to inform the design of a future superiority randomized controlled trial.

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  • 11.
    Boman, Krister K.
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Lannering, Birgitta
    Pediatric Oncology Department of Pediatrics Institute of Clinical Sciences Gothenburg University Gothenburg Sweden.
    von Essen, Louise
    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 Women's and Children's Health, Healthcare Sciences and e-Health.
    Jarfelt, Marianne
    Department of Oncology Institute of Clinical Sciences Gothenburg University Gothenburg Sweden;Follow‐Up Clinic for Adult Childhood Cancer Survivors and Cancer Rehabilitation Sahlgrenska University Hospital Gothenburg Sweden.
    Generalizing approaches to surveillance for complex social outcomes in broad‐range patient populations—: The cost in terms of lost information and subgroup utility2022In: Cancer, ISSN 0008-543X, E-ISSN 1097-0142, Vol. 128, no 13, p. 2400-2404Article in journal (Refereed)
    Abstract [en]

    Complex social outcomes, including those related to education and employment, depend on compound combinations of background factors that are significantly different for childhood and adult cancers. Medical and psychosocial prerequisites related to the age at cancer diagnosis and treatment require surveillance for complex social outcomes that meets the particularized needs of corresponding patient subgroups.

  • 12.
    Brantnell, Anders
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Olsson, Erik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Psychosocial care via internet, a mode to achieve improved patient care at a lower cost?2011Conference paper (Refereed)
    Abstract [en]

    The primary research objective of the U-CARE Program is to evaluate the clinical efficacy and cost-effectiveness of Internet-based self-managed programs of psychosocial care to patients and significant others. To reach this we have constructed an Internet-based platform. In order to plan for implementation we have carried out a stakeholder analysis and identified possible implementation strategies

  • 13.
    Brantnell, Anders
    et al.
    Uppsala University, Disciplinary Domain of Science and Technology, Technology, Department of Civil and Industrial Engineering, Industrial Engineering and Management. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Temiz, Serdar
    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.
    Woodford, Joanne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Barriers to and Facilitators of the Implementation of Digital Mental Health Interventions as Perceived by Primary Care Decision Makers: Content Analysis of Structured Open-Ended Survey Data2023In: JMIR Human Factors, E-ISSN 2292-9495, Vol. 10, article id e44688Article in journal (Refereed)
    Abstract [en]

    Background: Digital mental health represents a way to increase access to evidence-based psychological support. However, the implementation of digital mental health in routine health care practice is limited, with few studies focusing on implementation. Accordingly, there is a need to better understand the barriers to and facilitators of implementing digital mental health. Existing studies have mainly focused on the viewpoints of patients and health professionals. Currently, there are few studies about barriers and facilitators from the perspective of primary care decision makers, that is, the persons responsible for deciding whether a given digital mental health intervention should be implemented in a primary care organization.

    Objective: The objectives were to identify and describe barriers to and facilitators of the implementation of digital mental health as perceived by primary care decision makers, evaluate the relative importance of different barriers and facilitators, and compare barriers and facilitators reported by primary care decision makers who have versus have not implemented digital mental health interventions.

    Methods: A web-based self-report survey was conducted with primary care decision makers responsible for the implementation of digital mental health in primary care organizations in Sweden. Answers to 2 open-ended questions about barriers and facilitators were analyzed through summative and deductive content analysis.

    Results: The survey was completed by 284 primary care decision makers—59 (20.8%) decision makers representing implementers (ie, organizations that offered digital mental health interventions) and 225 (79.2%) respondents representing nonimplementers (ie, organizations that did not offer digital mental health interventions). Overall, 90% (53/59) of the implementers and 98.7% (222/225) of the nonimplementers identified barriers, and 97% (57/59) of the implementers and 93.3% (210/225) of the nonimplementers identified facilitators. Altogether, 29 barriers and 20 facilitators of implementation were identified related to guidelines; patients; health professionals; incentives and resources; capacity for organizational change; and social, political, and legal factors. The most prevalent barriers were related to incentives and resources, whereas the most prevalent facilitators were related to the capacity for organizational change.

    Conclusions: A number of barriers and facilitators were identified that could influence the implementation of digital mental health from the perspective of primary care decision makers. Implementers and nonimplementers identified many common barriers and facilitators, but they differ in terms of certain barriers and facilitators. Common and differing barriers and facilitators identified by implementers and nonimplementers may be important to address when planning for the implementation of digital mental health interventions. For instance, financial incentives and disincentives (eg, increased costs) are the most frequently mentioned barrier and facilitator, respectively, by nonimplementers, but not by implementers. One way to facilitate implementation could be to provide more information to nonimplementers about the actual costs related to the implementation of digital mental health.

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  • 14.
    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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  • 15. Broberger, Eva
    et al.
    Tishelman, Carol
    von Essen, Louise
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Discrepancies and similarities in how patients with lung cancer and their professional and family caregivers assess symptom occurrence and symptom distress.2005In: J Pain Symptom Manage, ISSN 0885-3924, Vol. 29, no 6, p. 572-83Article in journal (Refereed)
  • 16. Broberger, Eva
    et al.
    Tishelman, Carol
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Doukkali, Eva
    Sprangers, Mirjam A. G.
    Spontaneous reports of most distressing concerns in patients with inoperable lung cancer: at present, in retrospect and in comparison with EORTC-QLQ-C30+LC132007In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 16, no 10, p. 1635-1645Article in journal (Refereed)
    Abstract [en]

    Patients with lung cancer experience considerable distress. Therefore, accurate methods for assessing distress and quality of life over time may play a key role for managing and evaluating palliative care. Alternatives to commonly used standardized questionnaires are individual measures. This study prospectively and retrospectively explored the concerns that 46 patients with inoperable lung cancer spontaneously reported as causing most distress close to diagnosis and 6 months later. Changes in content individually generated through a structured inductive freelisting were compared with EORTC-QLQ-C30+LC13 ratings. The results showed that patients perceived a wide variety of concerns as most distressing and that their concerns changed over time. Between 56 and 62% of these concerns were assessed by items included in the EORTC-QLQ-C30+LC13 questionnaires. Furthermore, patients' reports of most distress from fatigue, pain and dyspnea were not always reflected in intensity ratings of comparable EORTC-QLQ-C30+LC13 items. These results indicate that items included in standardized measures are not always adequate to assess patients' concerns, priorities and changes over time. In addition to standardized questionnaires, individualized measures may be useful in the clinical palliative setting for providing detailed information about the individual's problems and prioritizations.

  • 17. Brédart, A.
    et al.
    Razavi, D.
    Robertson, C.
    Batel-Copel, L.
    Larsson, Gunnel
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Lichosik, D.
    Meyza, J.
    Schraub, S.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    de Haes, J. C.
    A comprehensive assessment of satisfaction with care: preliminary psychometric analysis in French, Polish, Swedish and Italian oncology patients2001In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 43, no 3, p. 243-252Article in journal (Refereed)
    Abstract [en]

    Satisfaction with care may be closely related to quality of life in cancer patients. This evaluation is especially relevant when quality of care is considered. The present study assessed whether equivalent scaling properties could be found in a comprehensive assessment of satisfaction with care (CASC) administered in cancer patients from French, Polish and Swedish oncology settings, in comparison to the scaling properties previously evidenced in the CASC with an Italian sample. A total of 140, 186 and 133 oncology patients were approached in France, Poland and Sweden, respectively. Specific items in the CASC were identified as consistently omitted across country samples. Multitrait scaling analysis on an item-grouping adapted for the French, Polish, Swedish and Italian samples provided excellent internal consistencies and convergent validity estimates. Discriminant validity proved less satisfactory, evidencing overlap between hypothesised care dimensions across country samples. The identification of omitted or overlapping items will lead to the design of a revised CASC version to further test in larger cross-cultural samples.

  • 18. Brédart, A.
    et al.
    Robertson, C.
    Razavi, D.
    Batel-Copel, L.
    Larsson, Gunnel
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Lichosik, D.
    Meyza, J.
    Schraub, S.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    De Haes, J.C.J.M.
    Patients' satisfaction ratings and their desire for care improvement across oncology settings from France, Italy, Poland and Sweden2003In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 12, no 1, p. 68-77Article in journal (Refereed)
    Abstract [en]

    There has been an increasing interest in patient satisfaction assessment across nations recently. This paper reports on a cross-cultural comparison of the comprehensive assessment of satisfaction with care (CASC) response scales. We investigated what proportion of patients wanted care improvement for the same level of satisfaction across samples from oncology settings in France, Italy, Poland and Sweden, and whether age, gender, education level and type of items affected the relationships found. The CASC addresses patient's satisfaction with the care received in oncology hospitals. Patients are invited to rate aspects of care and to mention for each of these aspects, whether they would want improvement.One hundred and forty, 395, 186 and 133 consecutive patients were approached in oncology settings from France, Italy, Poland and Sweden, respectively. Across country settings, an increasing percentage of patients wanted care improvement for decreasing levels of satisfaction. However, in France a higher percentage of patients wanted care improvement for high-satisfaction ratings whereas in Poland a lower percentage of patients wanted care improvement for low-satisfaction ratings. Age and education level had a similar effect across countries. Confronting levels of satisfaction with desire for care improvement appeared useful in comprehending the meaning of response choice labels for the CASC across oncology settings from different linguistic and cultural background. Linguistic or socio-cultural differences were suggested for explaining discrepancies between countries.

  • 19.
    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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  • 20.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Alaie, Iman
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    The factor structure of traumatic stress in parents of children with cancer: A longitudinal analysis2012In: Journal of Pediatric Psychology, ISSN 0146-8693, E-ISSN 1465-735X, Vol. 37, no 4, p. 448-457Article in journal (Refereed)
    Abstract [en]

    Objectives To determine the factor structure of posttraumatic stress symptoms (PTSS) and assess its stability over time among parents of children diagnosed with cancer. 

    Methods  Parents of children with cancer included in a longitudinal study completed the posttraumatic stress disorder (PTSD) Checklist–Civilian Version 2 weeks (n = 249) and 2 (n = 234) and 4 (n = 203) months after their child's diagnosis. Confirmatory factor analysis (CFA) was used to assess 3 models of the underlying dimensions of PTSD and invariance tests were used to assess stability over time. 

    Results  A longitudinal CFA with the factors reexperiencing, avoidance, dysphoria, and hyperarousal provided best fit to the data. Invariance testing suggested that the pattern and size of loadings were equivalent across the three assessments. 

    Discussions Findings tentatively suggest that PTSS among parents of children with cancer consist of four factors. Implications for research and clinical practice are discussed.

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  • 21.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Carlbring, Per
    Department of Psychology, Umeå University.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Guided self-help as intervention for traumatic stress in parents of children with cancer: Conceptualization, intervention strategies, and a case study2013In: Journal of psychosocial oncology, ISSN 0734-7332, E-ISSN 1540-7586, Vol. 31, no 1, p. 13-29Article in journal (Refereed)
    Abstract [en]

    Being a parent of a child diagnosed with cancer poses an enormous stressor. Indeed, several parents have difficulties adjusting to such a situation and react with symptoms of traumatic stress, depression, and reduced quality of life. However, there is little conceptual work on behavioral mechanisms that contribute to suboptimal adaptation in these parents. The authors present a conceptualization in which experiential avoidance and rumination are suggested to contribute to increased levels of traumatic stress and suboptimal adaption. Based on this conceptualization, a recently developed intervention for parents of children with cancer, in the form of guided self-help, is presented. Finally, the authors present a successful case study as an example of the application of this intervention. Clinical implications and suggestions for future research are discussed.

  • 22.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Carlbring, Per
    Institutionen för psykologi, Umeå universitet.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Guided self-help as intervention for traumatic stress in parents of children with cancer: Conceptualization, intervention strategies, and two case studies2012Conference paper (Refereed)
  • 23.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Carlbring, Per
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Guided Self-help via the Internet for Parents of Children Recently Diagnosed with Cancer: A Randomized Controlled Trial2014Conference paper (Refereed)
  • 24.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Carlbring, Per
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Health Economic Outcomes One Year after Internet-based Guided Self-help Targeting Posttraumatic Stress Symptoms in Parents of Children Recently Diagnosed with Cancer: A Randomized Controlled Trial2015Conference paper (Refereed)
  • 25.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, University Hospital.
    Carlbring, Per
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Internet-based Guided Self-help for Parents of Children Diagnosed with Cancer: 1-year Follow-up of a Randomized Controlled Trial2015Conference paper (Other academic)
  • 26.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Carlbring, Per
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Internet-based guided self-help for parents of children on cancer treatment: A randomized controlled trial2015In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 24, no 9, p. 1152-1158Article in journal (Refereed)
    Abstract [en]

    Objective

    The aim of the study was to investigate the feasibility and preliminary efficacy of an Internet-based guided self-help intervention for posttraumatic stress symptoms (PTSS) and related symptoms in parents of children on cancer treatment.

    Methods

    Parents of children on cancer treatment, who fulfilled the modified symptom criteria on the PTSD Checklist, were randomly allocated to the intervention or to a wait-list control condition. The intervention group accessed a 10-week guided self-help program via the Internet based on principles from cognitve behavior therapy. The primary outcome PTSS and the secondary outcomes depression and anxiety were assessed by self-report preintervention and postintervention.

    Results

    Seven hundred forty-seven parents were approached and informed about the study, 92 were assessed for eligibility, and 58 were included and randomized to the intervention (n = 31) or wait list (n  = 27). Eightteen participants completed the intervention. Intention-to-treat analyses indicated a significant effect of the intervention on PTSS with a large between-group effect size at postassessment (Cohen's d = 0.88). The intervention group reported reductions in PTSS with a large within-group effect size (d = 1.62) compared with a minimal reduction in the wait-list group (d  = 0.09). There was a significant intervention effect on depression and anxiety and reductions in the intervention group with large within-group effect sizes (d = 0.85–1.09).

    Conclusions

    Findings indicate a low enrollment rate and considerable attrition but also that Internet-based guided self-help shows promise for parents of children on cancer treatment who report a high level of PTSS and would like to take part in an Internet-based intervention.

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  • 27.
    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.

  • 28.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, University Hospital.
    Hovén, Emma
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Carlbring, Per
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Attentional bias towards cancer-related stimuli is related to symptoms of posttraumatic stress in parents of children recently diagnosed with cancer2015Conference paper (Refereed)
  • 29.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Hovén, Emma
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Carlbring, Per
    Stockholm Univ, Dept Psychol, S-10691 Stockholm, Sweden.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Posttraumatic stress and attentional bias towards cancer-related stimuli in parents of children recently diagnosed with cancer2016In: PLOS ONE, E-ISSN 1932-6203, Vol. 11, no 4, article id e0152778Article in journal (Refereed)
    Abstract [en]

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

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

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

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

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  • 30.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Silberleitner, Nicola
    University of Konstanz, Department of Psychology, Konstanz, Germany.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Avoidance and hyperarousal mediates the relationship between reexperiencing and dysphoria in parents of children with cancer: a longitudinal analysis2012In: 12th International Congress of Behavioral Medicine, 2012Conference paper (Refereed)
    Abstract [en]

    There is little theoretical and empirical work regarding the mechanisms underlying the development of traumatic stress among parents of children with cancer. Such work would add to the understanding of this phenomenon and could inform intervention strategies for this group. Cognitive processing theory stipulates that avoidance mediates the relationship between intrusive thoughts about trauma and psychological distress (Creamer, et al., 1992). Evidence also suggests that hyperarousal predicts emotional numbing in response to trauma (Litz, et al., 1997; Weems, et al., 2003). The purpose of this study was to investigate the mediating role of avoidance and hyperarousal in the relationship between reexperiencing and dysphoria among parents of children on cancer treatment.

    We used data from a longitudinal study with three assessment points: T1 = 2 weeks after the child´s diagnosis (n = 249), T2 = two months after the child´s diagnosis (n = 234), and T3 = four months after diagnosis (n = 203). The PTSD-Checklist Civilian was used as a measure of symptoms of traumatic stress interpreted with Simms et al. (2002) four-factor theory of traumatic stress. Two models were evaluated with mediation analysis using bias corrected bootstrap estimation of indirect effects and 95% confidence intervals (CI; Preacher and Hayes, 2008). The first model included two indicators of avoidance at T2 as mediators of the relationship between reexperiencing at T1 and dysphoria at T3, while controlling for initial levels of included variables and gender. In the second model hyperarousal at T2 was added as a mediator.

    In the first model there was a significant total indirect effect from reexperiencing to dysphoria via avoidance (0.048, CI = 0.012-0.116). However, only avoidance of activities or situations reminding of the child´s disease had a significant specific indirect effect (0.044, CI = 0.009-0.097). In the second model there was a significant total indirect effect from reexperiencing to dysphoria via avoidance and hyperarousal (0.140, CI = 0.076-0.233). However, only hyperarousal contributed with a significant specific indirect effect (0.110, CI = 0.061-0.212).

    The current analyses suggest that avoidance and hyperarousal both are important targets for intervention in this population.

  • 31.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Silberleitner, Nicola
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Avoidance and hyperarousal mediate the relationship between reexperiencing and dysphoria in parents of children with cancer: a longitudinal analysis2012Conference paper (Refereed)
  • 32.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, University Hospital.
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology.
    Development, Testing, and Evaluation of an Online, Guided, Psychological Intervention for Parents of Children Previously Treated for Cancer2015Conference paper (Refereed)
  • 33.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, University Hospital.
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Wikman, Anna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Carlbring, Per
    Stockholm Univ, Stockholm, Sweden..
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    von Essén, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health. Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology.
    Dimensions of Posttraumatic Stress Symptoms and their Relationships with Depression, Anxiety, and Quality of Life in Parents of Children Recently Diagnosed with Cancer2016In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 25, no SP. S3, p. 76-76Article in journal (Other academic)
  • 34.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Skogseid, Ellen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Carlbring, Per
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Experiential Avoidance and Rumination in Parents of Children on Cancer Treatment: Relationships with Posttraumatic Stress Symptoms and Symptoms of Depression2016In: Journal of clinical psychology in medical settings, ISSN 1068-9583, E-ISSN 1573-3572, Vol. 23, no 1, p. 67-76Article in journal (Refereed)
    Abstract [en]

    We conducted a cross-sectional survey study to investigate whether there is a relationship between experiential avoidance (EA), rumination, post-traumatic stress symptoms (PTSS), and symptoms of depression, in parents of children on cancer treatment. Data from 79 parents (55 mothers) of 79 children with a median of three months since their cancer diagnosis were included in cross-sectional analyses. EA and rumination were positively correlated with PTSS and symptoms of depression. EA and rumination did not provide incremental explained variance in PTSS over and above that explained by symptoms of depression, while controlling for symptoms of anxiety and demographic characteristics. However, EA and rumination provided incremental explained variance in symptoms of depression over and above that explained by PTSS, while controlling for symptoms of anxiety and demographic characteristics. Rumination and EA are important constructs in the understanding of PTSS and symptoms of depression in parents of children on cancer treatment. Future research should delineate the temporal relationships between these constructs.

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  • 35.
    Cernvall, Martin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Skogseid, Ellen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Ljungman, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care. Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology.
    The relationship between traumatic stress, experiential avoidance, and depression in parents of children recently diagnosed with cancer2012In: 12th international Congress of Behavioral Medicine, 29 August - 1 September 2012, Budapest Hilton Hungary: Program Book, 2012, p. 138-138Conference paper (Refereed)
    Abstract [en]

    Parents of children recently diagnosed with cancer can experience severe psychosocial distress. Experiential avoidance has been defined as the tendency to avoid or escape from certain private experiences (e.g., thoughts, feelings, memories) or contexts that elicit them (Hayes et al., 1996). This construct has been shown to be linked to distress in several populations and has received increased interest as a target for intervention. The purpose of this study was to investigate the relationship between traumatic stress, experiential avoidance, and depression in parents of children recently diagnosed with cancer. It was hypothesized that experiential avoidance would account for the relationship between traumatic stress and depression. 

    48 parents (33 mothers and 15 fathers) of children recently diagnosed with cancer and who participated in the screening/pre-assessment of a RCT of a psychosocial intervention were included in the current cross-sectional study. The mean (SD) of months since the child’s diagnosis was 3.5 (1.8). Parents provided self-report of demographic characteristics, general anxiety, traumatic stress, experiential avoidance, and depression.

    Hierarchical regression was used with depression as dependent variable. In step 1 demographic variables and general anxiety was entered (∆R2 = .57, p < .001). In step 2 traumatic stress was added resulting in a significant increase in explained variance (∆R2 = .04, p < .05, β for traumatic stress = 0.39, p < .05). In step 3 experiential avoidance was added resulting in a significant increase in explained variance (∆R2 = .06, p < .05, β for experiential avoidance = 0.35, p < .05). Furthermore, traumatic stress was no longer a significant predictor of depression (β = 0.15, p = 40). Total R2 in the final model was .68. Mediation analysis (Preacher & Hayes, 2008) confirmed a significant indirect effect from traumatic stress to depression via experiential avoidance (estimate = 0.21, bootstrap 95% CI = 0.03-0.38). 

    The current results suggest that experiential avoidance accounts for the relationship between traumatic stress and depression in parents of children recently diagnosed with cancer. Experiential avoidance could be a potential target in psychosocial interventions for this group.

  • 36.
    Chiwanga, Faraja S.
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health. Directorate of Medical Services, Muhimbili National Hospital, Dar es Salaam, United Republic of Tanzania.
    Woodford, Joanne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Masika, Golden M.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health. Department of Clinical Nursing, University of Dodoma, Dodoma, United Republic of Tanzania.
    Richards, David A.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health. Department of Health and Caring Sciences, Western Norway University of Applied Sciences, Bergen, Norway.
    Savi, Victor
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    An mHealth Intervention to Improve Guardians' Adherence to Children's Follow-Up Care for Acute Lymphoblastic Leukemia in Tanzania (GuardiansCan Project): Protocol for a Development and Feasibility Study2023In: JMIR Research Protocols, E-ISSN 1929-0748, Vol. 12, article id 48799Article in journal (Refereed)
    Abstract [en]

    Background: Cancer is a leading cause of death during childhood and in low- and middle-income countries survival rates can be as low as 20%. A leading reason for low childhood cancer survival rates in low- and middle-income countries such as Tanzania is treatment abandonment. Contributing factors include poor communication between health care providers and children's guardians, insufficient cancer knowledge, and psychological distress.

    Objective: Our aim is to respond to Tanzanian guardians' poor adherence to children's follow-up care after treatment for acute lymphoblastic leukemia with the help of mobile health (mHealth) technology. Our goal is to increase guardians' adherence to children's medications and follow-up visits and to decrease their psychological distress.

    Methods: Following the Medical Research Council framework for developing and evaluating complex interventions, we will undertake the GuardiansCan project in an iterative phased approach to develop an mHealth intervention for subsequent testing. Public contribution activities will be implemented throughout via the establishment of a Guardians Advisory Board consisting of guardians of children with acute lymphoblastic leukemia. We will examine the acceptability, feasibility, and perceived impact of Guardians Advisory Board activities via an impact log and semistructured interviews (study I). In phase 1 (intervention development) we will explore guardians' needs and preferences for the provision of follow-up care reminders, information, and emotional support using focus group discussions and photovoice (study II). We will then co-design the mHealth intervention with guardians, health care professionals, and technology experts using participatory action research (study III). In phase 2 (feasibility), we will examine clinical, methodological, and procedural uncertainties associated with the intervention and study procedures to prepare for the design and conduct of a future definitive randomized controlled trial using a single-arm pre-post mixed methods feasibility study (study IV).

    Results: Data collection for the GuardiansCan project is anticipated to take 3 years. We plan to commence study I by recruiting Guardians Advisory Board members in the autumn of 2023.

    Conclusions: By systematically following the intervention development and feasibility phases of the Medical Research Council Framework, and working alongside an advisory board of guardians, we intend to develop an acceptable, culturally appropriate, feasible, and relevant mHealth intervention with the potential to increase guardians' adherence to children's follow-up care after treatment of acute lymphoblastic leukemia, leading to a positive impact on children's health and chances to survive, and reducing distress for guardians.

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  • 37.
    Coumoundouros, Chelsea
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health. Clinical Education, Development and Research (CEDAR), Psychology, University of Exeter, Exeter, United Kingdom .
    El Arab, Rabie Adel
    Faculty of Nursing and Physiotherapy, University of Lleida, Lleida, Spain; Healthcare Research Group (GRECS), Institute for Biomedical Research (IRBLleida), Lleida, Spain .
    Farrand, Paul
    Clinical Education, Development and Research (CEDAR), Psychology, University of Exeter, Exeter, United Kingdom .
    Hamilton, Alexander
    Exeter Kidney Unit, Royal Devon University Healthcare NHS Foundation Trust, Exeter, United Kingdom; Faculty of Health and Life Sciences, University of Exeter Medical School, University of Exeter, Exeter, United Kingdom.
    Sanderman, Robbert
    Department of Health Psychology, University Medical Center Groningen, University of Groningen, Groningen, Netherlands.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Woodford, Joanne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Potential Implementers’ Perspectives on the Development and Implementation of an e–Mental Health Intervention for Caregivers of Adults With Chronic Kidney Disease: Qualitative Interview Study2023In: JMIR Human Factors, E-ISSN 2292-9495, Vol. 10, article id e51461Article in journal (Refereed)
    Abstract [en]

    Background: e–Mental health interventions can improve access to mental health support for caregivers of people living with chronic kidney disease (CKD). However, implementation challenges often prevent effective interventions from being put into practice. To develop an e–mental health intervention for caregivers of people living with CKD that is optimized for future implementation, it is important to engage professionals that may endorse or deliver the intervention (ie, potential implementers) during intervention development.

    Objective: This study aims to explore the perspectives of potential implementers working in kidney care, in mental health care, or at nonprofit organizations regarding the design and implementation of an e–mental health intervention for caregivers of people living with CKD.

    Methods: Potential implementers (N=18) were recruited via National Health Service Trusts, email, and social media advertisements to participate in semistructured video interviews. Interview questions were informed by the Consolidated Framework for Implementation Research (CFIR). Data were analyzed using a deductive analysis approach using the CFIR, with inductive coding applied to relevant data not captured by the framework.

    Results: A total of 29 generic categories, related to 17 CFIR constructs, were identified. The perceived fit between the intervention and implementation context (ie, existing service delivery models and work routines) and existing social networks among potential implementers were perceived as important factors in enhancing implementation potential. However, a need for capacity building among potential implementers to create systems to support the identification and referral of caregivers to an e–mental health intervention was identified. Equity concerns were raised regarding the intervention, highlighting the importance of incorporating an equity lens during intervention design to enhance accessibility and adoption.

    Conclusions: Potential implementers provided valuable insights into key design and implementation factors to help inform the development of an e–mental health intervention for caregivers of people living with CKD. Incorporating their feedback can help ensure the intervention is acceptable and inform the selection of future implementation strategies to enhance the implementation potential of the intervention. Potential implementers should continue to be engaged throughout intervention development.

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  • 38.
    Coumoundouros, Chelsea
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health. Clinical Education, Development and Research (CEDAR), Psychology, University of Exeter, Exeter, United Kingdom .
    El Arab, Rabie Adel
    Faculty of Nursing and Physiotherapy, University of Lleida, Lleida, Spain; Institute for Biomedical Research (IRBLleida), Healthcare Research Group (GRECS), Lleida, Spain .
    Farrand, Paul
    Clinical Education, Development and Research (CEDAR), Psychology, University of Exeter, Exeter, United Kingdom .
    Hamilton, Alexander
    Exeter Kidney Unit, Royal Devon University Healthcare NHS Foundation Trust, Exeter, United Kingdom; Faculty of Health and Life Sciences, University of Exeter Medical School, University of Exeter, Exeter, United Kingdom .
    Sanderman, Robbert
    Department of Health Psychology, University Medical Center Groningen, University of Groningen, Groningen, Netherlands .
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Woodford, Joanne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Stakeholder perspectives on implementation of e-mental health interventions for caregivers of adults with kidney conditions2023Conference paper (Refereed)
    Abstract [en]

    Background: E-mental health interventions for caregivers can be effective, but implementation challenges often prevent implementation into real-world practice. To understand these challenges, this study aimed to explore stakeholders’ views on the implementation and design of e-mental health interventions for caregivers of adults with kidney conditions to inform initial intervention development and future implementation planning.

    Methods: Semi-structured interviews with 18 professional stakeholders working with caregivers and/or people with kidney conditions in healthcare and community settings in the United Kingdom were conducted. Interviews explored topics including the implementation setting, barriers and facilitators to implementation, and intervention design. Interview transcripts were analysed using content analysis with deductive coding using the Consolidated Framework for Implementation Research, and inductive coding.

    Findings: Stakeholders acknowledged the importance of providing mental health support to caregivers, however, at a societal level (e.g. policy) caregivers tend to be undervalued and are a low priority. Stakeholders expressed equity and safeguarding concerns regarding e-mental health interventions, desiring an intervention accessible to people with different health and digital literacy levels at no cost. Building awareness and knowledge about the intervention among many professionals and having simple intervention referral pathways were important implementation facilitators. 

    Discussion: Provision of mental health support for caregivers is endorsed by stakeholders, however involving stakeholders in implementation beyond promoting and referral of caregivers to the intervention would be challenging without additional resources. Intervention design and implementation factors identified by stakeholders must be considered during intervention development to design e-mental health interventions optimized for implementation into real-world practice. 

  • 39.
    Coumoundouros, Chelsea
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health. Clinical Education, Development and Research (CEDAR), Psychology, University of Exeter, Exeter, UK.
    Farrand, Paul
    Clinical Education, Development and Research (CEDAR), Psychology, University of Exeter, Exeter, UK.
    Hamilton, Alexander
    Faculty of Health and Life Sciences, University of Exeter Medical School, University of Exeter, Exeter, UK; Exeter Kidney Unit, Royal Devon University Healthcare NHS Foundation Trust, Exeter, UK.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Sanderman, Robbert
    Department of Health Psychology, University Medical Center Groningen, University of 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, Healthcare Sciences and e-Health.
    Cognitive behavioural therapy self-help intervention preferences among informal caregivers of adults with chronic kidney disease: an online cross-sectional survey2023In: BMC Nephrology, ISSN 1471-2369, E-ISSN 1471-2369, Vol. 24, no 1, article id 4Article in journal (Refereed)
    Abstract [en]

    Background: Informal caregivers (i.e. family and friends) provide essential support to people with chronic kidney disease (CKD). Many informal caregivers experience mental health problems such as anxiety and depression due to the caregiving role, and commonly have unmet psychological support needs. One potential solution is cognitive behavioural therapy (CBT) self-help interventions that are less reliant on extensive involvement of healthcare professionals, which may increase access. Within the intervention development phase of the MRC framework, the study's primary objective was to examine informal caregivers' self-help intervention preferences (e.g. delivery format, content). Secondary objectives were to describe the informal caregiver's situation (e.g. type of care activities) and mental health (symptoms of depression, anxiety, and stress).

    Methods: An online cross-sectional survey conducted in the United Kingdom. Informal caregivers of adults living with CKD were recruited via social media, websites, newsletters, magazine articles, a podcast episode, and paid Facebook advertisements. The survey examined: informal caregiver characteristics; care recipient characteristics; self-help intervention preferences; and informal caregiver's mental health using the DASS-21. Data were analysed using descriptive statistics.

    Results: Sixty-five informal caregivers participated. The majority (85%) were female, caring for a male (77%) spouse/partner (74%). Responses indicated 58% of informal caregivers were experiencing at least mild depression. In total, 48% indicated they were likely to use a CBT self-help intervention, preferring an intervention provided via internet (e.g. website) (64%), workbook (56%), or individually in-person (54%). Regarding content, interventions should cover a wide range of topics including living with CKD, support services, informal caregiver's physical health, and diet. Overall, 48% reported a preference for a supported intervention, with support delivered in-person or via email by a trained professional at a community organisation.

    Conclusions: Results suggest CBT self-help interventions may be an acceptable way to provide psychological support to informal caregivers, however the study is limited by the small sample size. A wide range of intervention preferences were identified indicating a need to tailor intervention content and delivery to enhance acceptability and engagement. Results will inform development of a CBT self-help intervention for informal caregivers of people with CKD.

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  • 40.
    Coumoundouros, Chelsea
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health. Clinical Education, Development and Research (CEDAR), Psychology, University of Exeter, Exeter, United Kingdom.
    Farrand, Paul
    Clinical Education, Development and Research (CEDAR), Psychology, University of Exeter, Exeter, United Kingdom.
    Hamilton, Alexander
    Exeter Kidney Unit, Royal Devon and Exeter NHS Foundation Trust, Exeter, United Kingdom.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Sanderman, Robbert
    Department of Health Psychology, University Medical Center Groningen, University of Groningen, Groningen, Netherlands .
    Woodford, Joanne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Self-help intervention preferences among informal caregivers of adults with kidney conditions: an online cross-sectional survey2022Conference paper (Refereed)
    Abstract [en]

    Introduction: Informal caregivers provide important help and support to people with kidney conditions. However, informal caregivers often experience common mental health difficulties, such as depression and anxiety, while in the caregiving role. Informal caregiver’s mental health negatively impacts their own wellbeing, and can also impact the wellbeing of the person they care for. One potential solution to address informal caregivers’ need for psychological support is the development of cognitive behavioural therapy self-help (CBT-SH) interventions. CBT-SH interventions can increase access to psychological support as they are less reliant on extensive involvement of healthcare professionals, and can be delivered in a variety of formats. However, there is a lack of research exploring CBT-SH intervention preferences among informal caregivers of adults with kidney conditions. Following the development phrase of the Medical Research Council framework for developing and evaluating complex interventions, we aim to explore CBT-SH intervention preferences among informal caregivers of adults with kidney conditions to inform the development of an intervention that is acceptable to users and optimised for implementation into routine practice. 

     

    Methods: Informal caregivers’ self-help intervention preferences were explored using an online cross-sectional survey. Adults living in the UK who were providing unpaid care to an adult with a kidney condition were eligible to participate. Participants were recruited via social media, websites, newsletters, and/or magazines of non-profit organisations for people with kidney conditions and/or informal caregivers. The survey contained questions related to (1) characteristics of the informal caregiver; (2) characteristics of the person with a kidney condition; (3) self-help intervention preferences (e.g. content, delivery format); and (4) informal caregiver’s mental health. Study materials were reviewed by two public contributors, informing the appearance of recruitment materials, and content of the participant information sheet and survey. Quantitative data analysis using descriptive statistics will be used to analyse survey responses.

     

    Results: Participants are currently being recruited, with data collection projected to end in May 2022. We aim to recruit approximately 150 participants, with 15 participants recruited as of mid-February 2022. Preliminary results describing participants’ sociodemographic background, caregiving situation (e.g. condition of the person they care for, relationship to the person they care for), and current mental health status will be presented. Intervention content and delivery (e.g. intervention format; where, when, and by whom the intervention is delivered) preferences identified as most important by informal caregivers will be reported. Findings will be used to guide development of a CBT-SH intervention for informal caregivers of people with kidney conditions and will inform upcoming qualitative research with informal caregivers and health and social care professionals to continue the intervention development process.

     

    Discussion: To our knowledge, this is the first study focused on the development of a CBT-SH intervention to support informal caregivers of people with kidney conditions. By incorporating informal caregiver’s intervention preferences during intervention development, we aim to ensure the intervention meets their needs and preferences, and will be acceptable when implemented into practice. Results reflect the first step towards the development of a CBT-SH intervention for informal caregivers of people with kidney conditions. 

  • 41.
    Coumoundouros, Chelsea
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health. Clinical Education, Development and Research (CEDAR), Psychology, University of Exeter, Exeter, United Kingdom .
    Farrand, Paul
    Clinical Education, Development and Research (CEDAR), Psychology, University of Exeter, Exeter, United Kingdom .
    Sanderman, Robbert
    Department of Health Psychology, University Medical Center Groningen, University of Groningen, Groningen, Netherlands .
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Woodford, Joanne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Sources of support and views of e-mental health among caregivers of adults with kidney conditions2023Conference paper (Refereed)
    Abstract [en]

    Background: Caregivers of adults with kidney conditions often experience mental health difficulties such as anxiety and depression. E-mental health interventions may help improve access to mental health support. To inform intervention development, this study aimed to explore caregivers’ experiences of receiving support and views of e-mental health interventions.   

    Methods: Semi-structured interviews are being conducted with adults providing unpaid care to an adult with a kidney condition in the United Kingdom. Interviews explore topics such as experiences of receiving support, barriers and facilitators to accessing support, and views on the design and implementation of e-mental health interventions. Interviews are being analysed using reflexive thematic analysis.

    Expected results: Preliminary findings highlight that caregivers’ situations are complex, challenging, and unpredictable. Informal sources of support (i.e., family, friends and community/social media groups) provide valued support. Support from healthcare professionals is minimal and varied across kidney care units. Limited time and competing responsibilities are major barriers to accessing support, and the flexibility of e-mental health interventions can facilitate access. Incorporating practical tools and activities caregivers could apply to their daily lives are important design considerations.    

    Current stage of work: Nine interviews have been conducted, transcribed, and are being analysed. Recruitment and analysis are ongoing. 

    Discussion: By understanding caregivers’ caring contexts, we can enhance our knowledge of caregivers’ needs, and identify factors to consider during intervention development to design e-mental health interventions tailored to caregivers’ needs and inform future implementation planning. Careful consideration of caregivers’ needs may also increase the acceptability and relevancy of the intervention.

  • 42.
    Coumoundouros, Chelsea
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health. Clinical Education, Development and Research (CEDAR); Psychology, University of Exeter, Exeter, United Kingdom .
    Farrand, Paul
    Clinical Education, Development and Research (CEDAR); Psychology, University of Exeter, Exeter, United Kingdom .
    Sanderman, Robbert
    Department of Health Psychology, University Medical Center Groningen, University of Groningen, Groningen, Netherlands .
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Woodford, Joanne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    "Systems seem to get in the way": a qualitative study exploring experiences of accessing and receiving support among informal caregivers of people living with chronic kidney disease2024In: BMC Nephrology, E-ISSN 1471-2369, Vol. 25, no 1, article id 7Article in journal (Refereed)
    Abstract [en]

    Background: The well-being of informal caregivers of people living with chronic kidney disease is influenced by their experiences with support, however, few studies have focused on exploring these experiences. This study aimed to explore informal caregivers' experiences accessing and receiving support while caring for someone living with chronic kidney disease.

    Methods: Informal caregivers of people living with chronic kidney disease (n = 13) in the United Kingdom were primarily recruited via community organisations and social media adverts to participate in semi-structured interviews. Interviews explored support needs, experiences of receiving support from different groups (e.g. healthcare professionals, family/friends), and barriers and facilitators to accessing support. Support was understood as including emotional, practical, and informational support. Data were analysed using reflexive thematic analysis.

    Results: Three themes were generated: (1) "Systems seem to get in the way" - challenges within support systems, illustrating the challenges informal caregivers encountered when navigating complex support systems; (2) Relying on yourself, describing how informal caregivers leveraged their existing skills and networks to access support independently, while recognising the limitations of having to rely on yourself to find support; and (3) Support systems can "take the pressure off", showing how support systems were able to help informal caregivers cope with the challenges they experienced if certain conditions were met.

    Conclusions: In response to the challenges informal caregivers experienced when seeking support, improvements are needed to better consider informal caregiver needs within healthcare systems, and to develop interventions tailored to informal caregiver needs and context. Within the healthcare system, informal caregivers may benefit from system navigation support and better integration within healthcare teams to ensure their informational support needs are met. New interventions developed to support informal caregivers should fit within their existing support systems and incorporate the qualities of support, such as empathy, that were valued. Additionally, use of an equity framework and user-centered design approaches during intervention development could help ensure interventions are accessible and acceptable.

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  • 43.
    Coumoundouros, Chelsea
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Mårtensson, Erika
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Arts, Centre for Gender Research. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Ferraris, Giulia
    Department of Health Psychology, University Medical Center Groningen, University of 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, Healthcare Sciences and e-Health.
    Sanderman, Robbert
    Department of Health Psychology, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands; Department of Psychology, Health and Technology, University of Twente, Enschede, the Netherlands.
    Woodford, Joanne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Barriers and facilitators to implementing e-mental health interventions – a systematic review focusing in on interventions for informal cancer and dementia caregivers2021Conference paper (Refereed)
    Abstract [en]

    Objectives

    This systematic review aimed to identify barriers and facilitators to implementing e-mental health interventions for informal caregivers.

    Methods 

    Electronic databases were searched for studies published since 2007 reporting on implementation of e-mental health interventions for caregivers of adults with chronic diseases. A thematic synthesis using the Consolidated Framework for Implementation Research (CFIR) was used to identify implementation barriers and facilitators.

    Results

    Implementation barriers and facilitators were reported for 15 unique interventions designed for cancer (n=8) or dementia (n=7) caregivers. Intervention and individual characteristics were the most commonly addressed CFIR domains. Facilitators related to intervention’s easy-to-use design and presentation of tailored materials. Barriers included a lack of intervention support and difficulty identifying with materials due to low diversity in caregiver demographics and dyad types presented. Perspectives from stakeholders other than caregivers were infrequently reported, however challenges finding resources and financing interventions posed a barrier to real-world implementation. Themes for cancer and dementia caregiver interventions were similar, however a specific dimension related to cancer caregiver interventions was the (un)desirability of dyadic interventions. 

    Conclusion and clinical implications

    E-mental health interventions for caregivers tend to be well-designed, however many dimensions of implementing these interventions remain largely unexplored. Future intervention development and evaluations should include feedback from stakeholders such as clinicians and care organizations to create a more complete picture of important factors for real-world intervention implementation. Review findings are part of a programme of research aiming to develop an implementation ready e-mental health intervention for cancer caregivers which will also be briefly discussed.

  • 44.
    Coumoundouros, Chelsea
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Mårtensson, Erika
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Arts, Centre for Gender Research. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Ferraris, Giulia
    Department of Health Psychology, University Medical Center Groningen, University of 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, Healthcare Sciences and e-Health.
    Sanderman, Robbert
    Department of Health Psychology, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands; Department of Psychology, Health and Technology, University of Twente, Enschede, the Netherlands.
    Woodford, Joanne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Implementation of e-mental health interventions for informal caregivers: a systematic review2021Conference paper (Refereed)
    Abstract [en]

    Background:

    Informal caregivers of people with chronic health conditions can experience anxiety, distress, depression, and other mental health difficulties as a result of their caregiving role. E-mental health interventions present a way to provide effective and accessible mental health support to informal caregivers, however implementation of e-mental health interventions can be challenging. A systematic review was conducted aiming to (1) examine implementation barriers and facilitators, and (2) identify implementation and intervention features associated with intervention effectiveness, to inform the design and implementation of e-mental health interventions for informal caregivers of adults with chronic diseases. 

    Methods:

    Studies published since 2007 were searched for in six electronic databases, clinical trial registries and OpenGrey. Eligible studies reported on the implementation and/or effectiveness of e-mental health interventions for informal caregivers of adults with chronic diseases. Studies reporting on implementation were included in a thematic synthesis using the Consolidated Framework for Implementation Research (CFIR) to identify implementation barriers and facilitators. Randomized controlled trials reporting on intervention effectiveness were included in a qualitative comparative analysis to determine conditions related to implementation (e.g. interventionist training) and intervention characteristics (e.g. presence of support) sufficient for an intervention to be effective. 

    Findings: 

    A total of 34 studies have been included, representing 18 unique interventions for informal cancer (n=8), dementia (n=9) or stroke (n=1) caregivers. The majority of interventions were self-administered, and were either based on cognitive behavioral therapy or stress and coping frameworks. 

    Aim 1: Implementation data were identified in 27 studies, representing 15 interventions. Intervention and individual (primarily informal caregiver) characteristics were the domains of the CFIR most commonly addressed. A barrier to implementation was lack of diversity among the informal care situations presented in interventions (e.g. not showing informal caregivers of different ages, ethnicities and care dyad types). Lack of support provided to informal caregivers was an additional barrier to implementation, however not all types of support are equally desirable (e.g. peer discussion forums). Implementation facilitators included intervention’s user-friendly designs and use of materials that informal caregivers could apply to their daily lives and routines. Perspectives from stakeholders at implementing organizations were not often explored, however, resource constraints (e.g. time) was one barrier to implementing e-mental health programs for informal caregivers.

    Aim 2: The qualitative comparative analysis included 8 randomized controlled trials and explored conditions such as the presence of peer support, professional support and the type of intervention theory. However, the analysis could not be conducted as the consistency level across the included studies was too low. 

    Discussion: 

    A variety of implementation barriers and facilitators were identified that can be used to inform future intervention development and implementation planning. Few studies were included in the qualitative comparative analysis, however there was low consistency in conditions sufficient for intervention effectiveness. Future research about e-mental health interventions for informal caregivers should seek out perspectives from a broader group of stakeholders, such as clinicians and care organizations, to gain further insight into implementation barriers and facilitators at different organizational levels.

  • 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.
    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.

  • 46.
    Coumoundouros, Chelsea
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Mårtensson, Erika
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Arts, Centre for Gender Research. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Ferraris, Giulia
    Department of Health Psychology, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands.
    Zuidberg, Justine Margaux
    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, Healthcare Sciences and e-Health.
    Sanderman, Robbert
    Department of Health Psychology, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands; Department of Psychology, Health and Technology, University of Twente, Enschede, the Netherlands.
    Woodford, Joanne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Implementation of e-mental health interventions for informal caregivers – a systematic review of what we know and where to go next2023Conference paper (Refereed)
    Abstract [en]

    Introduction: E-mental health interventions have the potential to provide accessible mental health support to informal caregivers who commonly experience mental health problems. However, e-mental health interventions for informal caregivers are frequently not implemented. 

    Methods: A mixed-methods systematic review was undertaken to explore what factors impact the implementation of e-mental health interventions for informal caregivers. Within the review, a thematic synthesis utilizing primarily deductive coding based on the Consolidated Framework for Implementation Research was used to identify implementation barriers and facilitators.

    Results: The thematic synthesis included 44 reports resulting in identification of 152 barriers and facilitators. Barriers and facilitators were commonly related to the intervention and individual characteristic domains of the framework, including barriers such as lack of diversity in informal care scenarios included in the intervention and lack of support, and facilitators such as user-friendly design and providing benefits to informal caregivers (e.g. improved wellbeing). Barriers and facilitators related to the outer and inner setting, and the implementation process were less commonly explored but included lack of resources as a barrier, and alignment between the intervention and organizational goals as a facilitator. 

    Conclusions: Implementation barriers and facilitators identified in this review can be used to inform future intervention development and implementation strategy development and planning. Future research should focus on exploring the perspectives of professionals who may be involved in implementation of e-mental health interventions for informal caregivers to improve our understanding of factors that influence e-mental health implementation within implementing organisations.

  • 47.
    Coumoundouros, Chelsea
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Mårtensson, Erika
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Arts, Centre for Gender Research. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Ferraris, Giulia
    Department of Health Psychology, University Medical Center Groningen, University of Groningen, Groningen, NL.
    Zuidberg, Justine Margaux
    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, Healthcare Sciences and e-Health.
    Sanderman, Robbert
    Department of Health Psychology, University Medical Center Groningen, University of Groningen, Groningen , NL; Department of Psychology, Health and Technology, University of Twente, Enschede, NL.
    Woodford, Joanne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Implementation of e–Mental Health Interventions for Informal Caregivers of Adults With Chronic Diseases: Mixed Methods Systematic Review With a Qualitative Comparative Analysis and Thematic Synthesis2022In: JMIR Mental Health, E-ISSN 2368-7959, Vol. 9, no 11, article id e41891Article, review/survey (Refereed)
    Abstract [en]

    Background: Informal caregivers commonly experience mental health difficulties related to their caregiving role. e–Mental health interventions provide mental health support in a format that may be more accessible to informal caregivers. However, e–mental health interventions are seldom implemented in real-world practice.

    Objective: This mixed methods systematic review aimed to examine factors associated with the effectiveness and implementation of e–mental health interventions for informal caregivers of adults with chronic diseases. To achieve this aim, two approaches were adopted: combinations of implementation and intervention characteristics sufficient for intervention effectiveness were explored using qualitative comparative analysis, and barriers to and facilitators of implementation of e–mental health interventions for informal caregivers were explored using thematic synthesis.

    Methods: We identified relevant studies published from January 1, 2007, to July 6, 2022, by systematically searching 6 electronic databases and various secondary search strategies. Included studies reported on the effectiveness or implementation of e–mental health interventions for informal caregivers of adults with cancer, chronic obstructive pulmonary disease, dementia, diabetes, heart disease, or stroke. Randomized controlled trials reporting on caregivers’ mental health outcomes were included in a crisp-set qualitative comparative analysis. We assessed randomized controlled trials for bias using the Risk of Bias 2.0 tool, and we assessed how pragmatic or explanatory their trial design was using the Pragmatic Explanatory Continuum Indicator Summary 2 tool. Studies of any design reporting on implementation were included in a thematic synthesis using the Consolidated Framework for Implementation Research to identify barriers to and facilitators of implementation.

    Results: Overall, 53 reports, representing 29 interventions, were included in the review. Most interventions (27/29, 93%) focused on informal cancer or dementia caregivers. In total, 14 reports were included in the qualitative comparative analysis, exploring conditions including the presence of peer or professional support and key persuasive design features. Low consistency and coverage prevented the determination of condition sets sufficient for intervention effectiveness. Overall, 44 reports were included in the thematic synthesis, and 152 barriers and facilitators were identified, with the majority related to the intervention and individual characteristic domains of the Consolidated Framework for Implementation Research. Implementation barriers and facilitators in the inner setting (eg, organizational culture) and outer setting (eg, external policies and resources) domains were largely unexplored.

    Conclusions: e–Mental health interventions for informal caregivers tend to be well-designed, with several barriers to and facilitators of implementation identified related to the intervention and individual user characteristics. Future work should focus on exploring the views of stakeholders involved in implementation to determine barriers to and facilitators of implementing e–mental health interventions for informal caregivers, focusing on inner and outer setting barriers and facilitators.

    Trial Registration: PROSPERO (International Prospective Register of Systematic Reviews) CRD42020155727; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020155727

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    fulltext
  • 48.
    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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    fulltext
  • 49.
    Ekstrand, Maria
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Larsson, Margareta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Tydén, Tanja
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Swedish teenager perceptions of teenage pregnancy, abortion, sexual behavior, and contraceptive habits: a focus group study among 17-year-old female high-school students2005In: Acta Obstetricia et Gynecologica Scandinavica, ISSN 0001-6349, E-ISSN 1600-0412, Vol. 84, no 10, p. 980-986Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Sweden has the highest abortion numbers among the Nordic countries. Since 1995, the abortion rate among teenagers has increased by nearly 50%. We therefore undertook a study where the overall aim was to gain a deeper understanding on which factors female teenagers believe may explain the increasing numbers of teenage abortions. Teenagers' perceptions of teenage pregnancy, abortion, sexual behavior, and contraceptive habits were investigated. METHODS: Six focus group interviews with 17-year-old Swedish girls were conducted. The interviews were tape-recorded, transcribed verbatim, and analyzed by manifest content analysis. RESULTS: Negative attitudes toward teenage pregnancy and supportive attitudes toward abortion were expressed. Risk-taking behaviors such as negligence in contraceptive use and intercourse under the influence of alcohol were suggested as main reasons behind the increasing numbers of abortions among Swedish teenagers. The contemporary, sexualized, media picture was believed to influence adolescents' sexual behavior, and liberal attitudes toward casual sex were expressed. Girls were perceived as more obliged than boys in taking responsibility for contraceptive compliance and avoidance of pregnancy. The apprehension that hormonal contraceptives cause negative side-effects was widely spread, and the participants were found to have a somewhat limited knowledge of abortion. The majority were unsatisfied with the quality of sexual education provided by the schools. CONCLUSION: Possible reasons for increased abortion numbers among teenagers in Sweden could be liberal attitudes toward casual sex in combination with negligence in contraceptive use, use of alcohol followed by sexual risk-taking, fear of hormonal contraceptives, and a deterioration of sexual education in the schools.

  • 50.
    Engvall, Gunn
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Cernvall, Martin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Larsson, Gunnel
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    Cancer during adolescence: negative and positive consequences reported during the acute and extended phase of survival.2011Conference paper (Refereed)
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