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  • 51. Oksholm, Trine
    et al.
    Rustøen, Tone
    Kongerud, Johny
    Ekstedt, Mirjam
    KTH Royal Institute of Technology ; Oslo University Hospital, Norway.
    Postsurgical transfer between hospitals is a risk situation for lung cancer patients2014In: 3rd Nordic Conference on Research in Patient Safety and Quality in Healthcare, 2014, October 2-3, Stavanger, Norway, 2014Conference paper (Refereed)
  • 52.
    Pedersen, Maria
    et al.
    University of Oslo, Norway ; Akershus University Hospital, Norway.
    Ekstedt, Mirjam
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Karolinska Institutet.
    Småstuen, Milada C.
    Akershus University College of Applied Sciences, Norway.
    Wyller, Vegard B.
    University of Oslo, Norway ; Akershus University Hospital, Norway.
    Sulheim, Dag
    Innlandet Hospital Trust, Norway.
    Fagermoen, Even
    Oslo University Hospital, Norway.
    Winger, Anette
    Akershus University College of Applied Sciences, Norway.
    Pedersen, Edvard
    UiT The Arctic University of Norway, Norway.
    Hrubos-Strøm, Harald
    Akershus University Hospital, Norway.
    Sleep-wake rhythm disturbances and perceived sleep in adolescent chronic fatigue syndrome2017In: Journal of Sleep Research, ISSN 0962-1105, E-ISSN 1365-2869, Vol. 26, no 5, p. 595-601Article in journal (Refereed)
    Abstract [en]

    Chronic fatigue syndrome (CFS) is characterized by long-lasting, disabling and unexplained fatigue that is often accompanied by unrefreshing sleep. The aim of this cross-sectional study was to investigate sleep-wake rhythm and perceived sleep in adolescent CFS patients compared to healthy individuals. We analysed baseline data on 120 adolescent CFS patients and 39 healthy individuals included in the NorCAPITAL project. Activity measures from a uniaxial accelerometer (activPAL) were used to estimate mid-sleep time (mid-point of a period with sleep) and time in bed. Scores from the Karolinska Sleep Questionnaire (KSQ) were also assessed. The activity measures showed that the CFS patients stayed significantly longer in bed, had a significantly delayed mid-sleep time and a more varied sleep-wake rhythm during weekdays compared with healthy individuals. On the KSQ, the CFS patients reported significantly more insomnia symptoms, sleepiness, awakening problems and a longer sleep onset latency than healthy individuals. These results might indicate that disrupted sleep-wake phase could contribute to adolescent CFS; however, further investigations are warranted.

  • 53.
    Sandlund, C.
    et al.
    Karolinska Institutet.
    Hetta, J.
    Karolinska Institutet.
    Nilsson, G.
    Karolinska Institutet.
    Ekstedt, Mirjam
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Karolinska Institutet.
    Westman, J.
    Karolinska Institutet.
    Group treatment for insomnia and impact on daytime symptomatology associated with insomnia: Analyses from a randomized controlled trial in primary care2017In: Sleep Medicine, ISSN 1389-9457, E-ISSN 1878-5506, Vol. 40, p. E291-E292Article in journal (Other academic)
  • 54.
    Sandlund, Christina
    et al.
    Karolinska Institutet;Stockholm County Council.
    Hetta, Jerker
    Karolinska Institutet.
    Nilsson, Gunnar H.
    Karolinska Institutet;Stockholm County Council.
    Ekstedt, Mirjam
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Karolinska Institutet.
    Westman, Jeanette
    Karolinska Institutet;Stockholm County Council.
    Impact of group treatment for insomnia on daytime symptomatology: analyses from a randomized controlled trial in primary care2018In: International Journal of Nursing Studies, ISSN 0020-7489, E-ISSN 1873-491X, Vol. 85, no September, p. 126-135Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: People typically seek primary health care for daytime symptoms and impairments they experience in association with their insomnia. However, few studies address the question of whether insomnia treatment can improve such symptomatology.

    OBJECTIVES: To investigate whether a nurse-led group treatment program, based on the techniques of cognitive behavioral therapy for insomnia (CBT-I), improved daytime symptomatology in primary care patients with insomnia.

    OUTCOMES: Fatigue (Fatigue Severity Scale [FSS]; main outcome), mood (General Health Questionnaire and Montgomery-Asberg Depression Rating Scale), health-related quality of life (Short-Form Health Survey), general daytime functioning, specific daytime symptoms (individual items from the Insomnia Severity Index and Uppsala Sleep Inventory), and dysfunctional beliefs (Dysfunctional Beliefs and Attitudes about Sleep).

    DESIGN: A randomized controlled trial including baseline and post-treatment assessment and a 1-year post-treatment follow-up of the intervention group.

    SETTINGS: Seven primary health care centers (Stockholm, Sweden).

    PARTICIPANTS: One hundred and sixty-five primary care patients who meet the criteria for insomnia disorder (mean age 54 years, SD 16). Most were women (73%).

    EXCLUSION CRITERIA: severe untreated illness, bipolar disorder, current stressful life event, night shift work, and untreated sleep disorder other than insomnia.

    METHODS: Data came from a randomized controlled trial of a 10-week nurse-led group treatment for insomnia based on CBT-I (n = 90). The control condition was treatment as usual (n = 75). In accordance with intention-to-treat principles, analyses included data on patients who completed baseline assessments (intervention n = 82, and control group n = 71; post-treatment dropout rate 20%). Fifty-four patients were included in the 1-year follow-up.

    RESULTS: Fatigue severity improved significantly more (p < 0.001) in the intervention than in the control group (intervention, total FSS score 37.2 [SD 11.9] to 31.0 [SD 13.4] vs. control 35.9 [SD 12.1] to 35.7 [SD 12.8]). This was true also for measurements on mood (psychological distress and depressive symptoms), health-related quality of life (mental functioning), general daytime functioning, specific daytime symptoms (worry about sleep, sleepiness, bodily tiredness, and difficulty concentrating) and dysfunctional beliefs. All improvements were maintained one year after group treatment.

    CONCLUSIONS: Many aspects of the daytime symptomatology of insomnia were improved via nurse-led group treatment based on CBT-I in primary health care.

  • 55.
    Sandlund, Christina
    et al.
    Karolinska Institutet, Sweden; Stockholm County Council, Sweden.
    Hetta, Jerker
    Karolinska Institutet, Sweden.
    Nilsson, Gunnar H.
    Karolinska Institutet, Sweden;Stockholm County Council, Sweden.
    Ekstedt, Mirjam
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Karolinska Institutet, Sweden.
    Westman, Jeanette
    Karolinska Institutet, Sweden;Stockholm County Council, Sweden.
    Improving insomnia in primary care patients: A randomized controlled trial of nurse-led group treatment2017In: International Journal of Nursing Studies, ISSN 0020-7489, E-ISSN 1873-491X, Vol. 72, p. 30-41Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Insomnia is a common health problem, and most people who seek help for insomnia consult primary care. In primary care, insomnia treatment typically consists of hypnotic drugs, although cognitive behavioral therapy for insomnia is the recommended treatment. However, such treatment is currently available to few primary care patients.

    OBJECTIVES: To evaluate the effects of a group treatment program for insomnia led by nurses in primary care.

    OUTCOMES: were the Insomnia Severity Index, a 2-week sleep diary, and a questionnaire on frequency of hypnotic drug use.

    DESIGN: A randomized controlled trial with pre- and post-treatment assessment and a 1-year post-treatment follow-up of the intervention group.

    SETTINGS: Routine primary health care; 7 primary care centers in Stockholm, Sweden.

    PARTICIPANTS: Patients consulting primary care for insomnia were assessed for eligibility. To be included, patients had to have insomnia disorder and be 18 years or older. Patients were excluded if they if they worked night shifts or had severe untreated somatic and/or mental illness, bipolar disorder, or untreated sleep disorder other than insomnia. One-hundred and sixty-five patients 20 to 90 years were included. Most were women, and many had co-existing somatic and/or mental health problems. The post-treatment dropout rate was 20%.

    METHODS: The intervention was a nurse-led group treatment for insomnia based on the techniques of cognitive behavioral therapy for insomnia. The nurses had 2days of training in how to deliver the program. Ninety patients were randomized to the intervention and 75 to the control group (treatment as usual). Data from 82 in the intervention and 71 in the control group were analyzed in accordance with intention-to-treat principles. Fifty-four of the 72 in the intervention group who participated in the group treatment program were followed up after 1year.

    RESULTS: Mean Insomnia Severity Index score decreased significantly from 18.4 to 10.7 after group treatment but remained unchanged after treatment as usual (17.0 to 16.6). The effect size was large (1.23). Group treatment also resulted in significant improvements in all sleep diary variables (sleep onset latency, total sleep time, time awake after sleep onset, number of awakenings, and sleep quality). It also reduced hypnotic drug use. Improvements were maintained 1-year post-treatment.

    CONCLUSIONS: Patients with insomnia can be treated successfully with a nurse-led group treatment program in primary health care. The results support implementation of the treatment program, particularly given the need for increased access to non-pharmacological insomnia treatments.

  • 56.
    Sandlund, Christina
    et al.
    Karolinska Institutet;Stockholm Cty Council.
    Kane, Kimberly
    Karolinska Institutet;Stockholm Cty Council;Stockholm university.
    Ekstedt, Mirjam
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Karolinska Institutet.
    Westman, Jeanette
    Karolinska Institutet;Stockholm Cty Council.
    Patients' experiences of motivation, change, and challenges in group treatment for insomnia in primary care: a focus group study2018In: BMC Family Practice, ISSN 1471-2296, E-ISSN 1471-2296, Vol. 19, article id 111Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The majority of patients who seek help for insomnia do so in primary health care. Nurse-led group treatment in primary care based on cognitive behavioral therapy for insomnia (CBT-I) can lead to improvements in both day- and nighttime symptoms. This study aimed to explore patients' experiences of nurse-led group treatment for insomnia in primary health care.

    METHODS: Seventeen patients who had participated in the group treatment program were interviewed in five focus groups. Interview transcriptions were analyzed with qualitative content analysis.

    RESULTS: Four themes emerged that described patients' experiences of the group treatment program. Involvement and trust open the door for change: Motivation to engage in treatment arose from patients' own desire for change, from being together with others who shared or understood their struggles, and from feeling emotionally affirmed and trustful. Competence arising from deeper understanding: Patients obtained knowledge and made it their own, which enabled them to develop functional sleep habits and let go of sleep performance and worry. The ability to impact their insomnia increased patients' trust in their own efficacy and helped them persist in behavioral change. Struggling with vulnerability and failure: Treatment was tough, and patients could feel challenged by external circumstances. Moreover, they could distrust their own efficacy. Tailoring treatment to individual needs: Patients experienced different life circumstances and adapted the techniques to their needs and abilities by focusing on what felt right for them.

    CONCLUSIONS: Patients went through a process of motivation, change, and challenges. They experienced certain aspects of treatment as essential to changing behavior and achieving improvements. Examples included being in a group with others who shared similar experiences, gaining knowledge about sleep, keeping a sleep diary, and practicing the sleep restriction technique. The study provides insights into patients' struggles during treatment, both those related to external circumstances and those related to feelings of vulnerability and failure. It also highlights the importance of adapting treatment to patients' differing needs, underscoring the value of person-centered care.

  • 57.
    Schildmeijer, Kristina
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Ekstedt, Mirjam
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Karolinska Institutet, Sweden.
    Att identifiera risker och vårdskador som kan drabba patienter som vårdas palliativt i sitt hem2016In: Presented at 4:e Nationella konferensen i Palliativ vård, Malmö, Sweden, March 15-16, 2016, 2016Conference paper (Other academic)
  • 58.
    Schildmeijer, Kristina
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Frykholm, Oscar
    KTH Royal Instute of Technology, Sweden.
    Ekstedt, Mirjam
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Karolinska Institutet, Sweden.
    Säker vård med hemmet som vårdplats2016In: Presented at Nationella Patientsäkerhetskonferensen, Stockholm, Sweden, September 21-22, 2016, 2016, 2016Conference paper (Other academic)
  • 59.
    Schildmeijer, Kristina
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Frykholm, Oscar
    Karolinska Institutet.
    Kneck, Åsa
    Karolinska Institutet;Ersta Sköndal Bräcke University College.
    Ekstedt, Mirjam
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Karolinska institutet.
    Not a straight line: patient's experiences of prostate cancer and their journey through the healthcare system2019In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 42, no 1, p. E36-E43Article in journal (Refereed)
    Abstract [en]

    Background

    Cancer and its treatment can severely impact quality of life, giving rise to complex needs with respect to follow-up care. To support patient needs and increase efficiency of care with limited resources, the Swedish government has launched national reforms to redesign cancer care pathways.

    Objective

    The aim of this study was to explore how prostate cancer patients experience their journey through the healthcare system when their care is provided according to the standardized care pathway, as described in healthcare policy documents.

    Methods

    A qualitative, descriptive approach with individual interviews was used. A template of a standardized prostate cancer pathway, created together with healthcare professionals, was used during interviews. Fourteen interviews were conducted with prostate cancer patients all operated on at a midsized hospital in southeast Sweden between October 2015 and April 2016. The interviews were analyzed with qualitative content analysis and illustrated in a patient journey map.

    Results

    We identified an overall theme, “walking a tightrope,” consisting of 4 categories: “waiting,” “becoming familiar with a troublesome body,” “adjusting to a different life,” and “information challenges.”

    Conclusions

    The clinical implementation of the standardized care pathway is described as a straight path through care, but patients described their experiences as walking a tightrope. Lack of information, especially about cancer treatment and its adverse effects, was the most common experience.

    Implications for Practice

    Our findings indicate areas where further healthcare tools could improve patient experiences of cancer treatment. This could include offering individualized information and tools to increase patient empowerment, as well as patient/caregiver collaboration (co-care).

  • 60.
    Schildmeijer, Kristina
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Skagerström, Janna
    Region Östergotland.
    Ericsson, Carin
    Nilsen, Per
    Ekstedt, Mirjam
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Patient involvement for safer care: nurses' perspective2016In: Paper presented at the 1st International conference on nursing (Nursing-2016), Dubai, UAE, December 5-7, 2016, Madridge , 2016Conference paper (Other academic)
  • 61.
    Schildmeijer, Kristina
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Unbeck, Maria
    Danderyd Hospital, Sweden;Karolinska Institutet, Sweden.
    Ekstedt, Mirjam
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Karolinska Institutet, Sweden.
    Lindblad, Marléne
    KTH Royal Instute of Technology, Sweden;Ersta Sköndal Bräcke University College, Sweden.
    Nilsson, Lena
    Linköping University, Sweden.
    Adverse events in patients in home healthcare: a retrospective record review using trigger tool methodology2018In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 8, no 1, article id e019267Article in journal (Refereed)
    Abstract [en]

    Objective Home healthcare is an increasingly common part of healthcare. The patients are often aged, frail and have multiple diseases, and multiple caregivers are involved in their treatment. This study explores the origin, incidence, types and preventability of adverse events (AEs) that occur in patients receiving home healthcare.

    Design A study using retrospective record review and trigger tool methodology. setting and methods Ten teams with experience of home healthcare from nine regions across Sweden reviewed home healthcare records in a two-stage procedure using 38 prede ned triggers in four modules. A random sample of records from 600 patients (aged 18 years or older) receiving home healthcare during 2015 were reviewed. Primary and secondary outcome measures The cumulative incidence of AEs found in patients receiving home healthcare; secondary measures were origin, types, severity of harm and preventability of the AEs.

    results The patients were aged 20–79 years, 280 men and 320 women. The review teams identi ed 356 AEs in 226 (37.7%; 95% CI 33.0 to 42.8) of the home healthcare records. Of these, 255 (71.6%; 95% CI 63.2 to 80.8) were assessed as being preventable, and most (246, 69.1%; 95% CI 60.9 to 78.2) required extra healthcare visits or led to a prolonged period of healthcare. Most of the AEs (271, 76.1%; 95% CI 67.5 to 85.6) originated in home healthcare; the rest were detected during home healthcare but were related to care outside home healthcare. The most common AEs were healthcare-associated infections, falls and pressure ulcers.

    conclusions AEs in patients receiving home healthcare are common, mostly preventable and often cause temporary harm requiring extra healthcare resources. The most frequent types of AEs must be addressed and reduced through improvements in interprofessional collaboration. This is an important area for future studies. 

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  • 62.
    Schildmeijer, Kristina
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Unbeck, Maria
    Karolinska Institutet, Sweden;Danderyd Hospital, Sweden.
    Lindblad, Marlene
    KTH Royal Instute of Technology, Sweden.
    Ekstedt, Mirjam
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Karolinska Institutet, Sweden.
    Nilsson, Lena
    Linköping University Hospital, Sweden.
    Vad vet vi om tillbud, skador och vårdskador inom hemsjukvården?2016In: Presented at Nationella Patientsäkerhetskonferensen, Stockholm, Sweden, September 21-22, 2016, 2016Conference paper (Other academic)
  • 63.
    Schildmeijer, Kristina
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Wallerstedt, Birgitta
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Ekstedt, Mirjam
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Karolinska Institutet, Sweden.
    Healthcare professionals' perceptions of risk when care is given in patients' homes2019In: Home Healthcare Now, ISSN 2374-4529, E-ISSN 2374-4537, Vol. 37, no 2, p. 97-105Article in journal (Refereed)
    Abstract [en]

    Perceptions of risks in decision making for home healthcare were examined. Twenty home healthcare professionals were interviewed. Content analysis yielded one theme (management of known and unpredictable risks) and four categories. Healthcare professionals had to handle both known and unpredictable risks in daily work in patients' homes concerning communication challenges, a fragmented organization at several levels, risky medication management, and balancing respect for patient autonomy and involvement in care against risk taking. Priority must be given to creating safer care in this setting.

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  • 64.
    Schildmeijer, Kristina
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Wannheden, Carolina
    Karolinska Institutet.
    Nilsson, Lina
    Linnaeus University, Faculty of Technology, Department of Informatics.
    Frykholm, Oscar
    Karolinska Institutet.
    Hellström, Amanda
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Flink, Maria
    Karolinska Institutet.
    Ekstedt, Mirjam
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Karolinska Institutet.
    Developing an eHealth Tool to Support Patient Empowerment at Home2018In: Building Continents of Knowledge in Oceans of Data: The Future of Co-Created eHealth / [ed] Adrien Ugon, Daniel Karlsson, Gunnar O. Klein & Anne Moen, IOS Press, 2018, Vol. 247, p. 925-929Conference paper (Refereed)
    Abstract [en]

    In previous research we have learned that patients with chronic or complex diseases often experience difficulties when transitioning from hospital care to self-care in their home. We address these difficulties by developing an eHealth tool for patients - ePATH (electronic Patient Activation in Treatment at Home) - intended to empower each patient to manage their individual situation. We have employed a user-centered design process involving both patients and healthcare personnel to specify the content and functionality of ePATH. The system is deployed as a web application with secure login for patients. In this article, we describe the main content and functionality of the system that makes it possible for a patient to manage symptoms development in relation to treatment progression Interactive functionality, e.g., reminders and social support, is included to make the ePATH a useful and informative bridge between patients, next-of-kin and different caregivers. One lesson learned is that it is necessary to incorporate motivational components in the development of an eHealth tool to successfully overcome the "intention-behavior" gap. The self-determination theory of motivation can be used to ensure that important aspects are not missed.

  • 65.
    Skagerström, Janna
    et al.
    Region Östergötland, Sweden;Linköping University, Sweden.
    Ericsson, Carin
    Region Östergötland, Sweden.
    Nilsen, Per
    Linköping University, Sweden.
    Ekstedt, Mirjam
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. KTH Royal Instute of Technology, Sweden.
    Schildmeijer, Kristina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Patient involvement for improved patient safety: a qualitative study of nurses' perceptions and experiences2017In: Nursing Open, E-ISSN 2054-1058, Vol. 4, no 4, p. 230-239Article in journal (Refereed)
    Abstract [en]

    AIM: To explore nurses' perceptions and experiences of patient involvement relevant to patient safety.

    DESIGN: Qualitative design using individual semi-structured interviews.

    METHODS: Interviews with registered nurses (n = 11) and nurse assistants (n = 8) were conducted in 2015-2016. Nurses were recruited from five different healthcare units in Sweden. The material was analysed using conventional content analysis.

    RESULTS: The analysis resulted in four categories: healthcare professionals' ways of influencing patient involvement for safer care; patients' ways of influencing patient involvement for safer care; barriers to patient involvement for safer care; and relevance of patient involvement for safer care. The nurses expressed that patient involvement is a shared responsibility. They also emphasized that healthcare provider has a responsibility to create opportunities for the patient to participate. According to the nurses, involvement can be hindered by factors related to the patient, the healthcare provider and the healthcare system. However, respondents expressed that patient involvement can lead to safer care and benefits for individual patients.

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  • 66.
    Sobko, Tanja
    et al.
    Karolinska Institutet.
    Svensson, Viktoria
    Karolinska Institutet.
    Ek, Anna
    Karolinska Institutet.
    Ekstedt, Mirjam
    Karolinska Institutet ; Ersta Sköndal University.
    Karlsson, Håkan
    Karolinska Institutet.
    Johansson, Elin
    Karolinska Institutet.
    Cao, Yingting
    Karolinska Institutet.
    Hagströmer, Maria
    Karolinksa Institutet.
    Marcus, Claude
    Karolinska Institutet.
    A randomised controlled trial for overweight and obese parents to prevent childhood obesity: Early STOPP (STockholm Obesity Prevention Program)2011In: BMC Public Health, ISSN 1471-2458, E-ISSN 1471-2458, Vol. 11, article id 336Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Overweight and obesity have a dramatic negative impact on children's health not only during the childhood but also throughout the adult life. Preventing the development of obesity in children is therefore a world-wide health priority. There is an obvious urge for sustainable and evidenced-based interventions that are suitable for families with young children, especially for families with overweight or obese parents. We have developed a prevention program, Early STOPP, combating multiple obesity-promoting behaviors such unbalanced diet, physical inactivity and disturbed sleeping patterns. We also aim to evaluate the effectiveness of the early childhood obesity prevention in a well-characterized population of overweight or obese parents. This protocol outlines methods for the recruitment phase of the study.

    DESIGN AND METHODS: This randomized controlled trial (RCT) targets overweight and/or obese parents with infants, recruited from the Child Health Care Centers (CHCC) within the Stockholm area. The intervention starts when infants are one year of age and continues until they are six and is regularly delivered by a trained coach (dietitian, physiotherapist or a nurse). The key aspects of Early STOPP family intervention are based on Swedish recommendations for CHCC, which include advices on healthy food choices and eating patterns, increasing physical activity/reducing sedentary behavior and regulating sleeping patterns.

    DISCUSSION: The Early STOPP trial design addresses weaknesses of previous research by recruiting from a well-characterized population, defining a feasible, theory-based intervention and assessing multiple measurements to validate and interpret the program effectiveness. The early years hold promise as a time in which obesity prevention may be most effective. To our knowledge, this longitudinal RCT is the first attempt to demonstrate whether an early, long-term, targeted health promotion program focusing on healthy eating, physical activity/reduced sedentary behaviors and normalizing sleeping patterns could be effective. If proven so, Early STOPP may protect children from the development of overweight and obesity.

    TRIAL REGISTRATION: The protocol for this study is registered with the clinical trials registry clinicaltrials.gov, ID: ES-2010).

  • 67.
    Sockolow, Paulina
    et al.
    Drexel University, USA.
    Hellesø, Ragnhild
    University of Oslo, Norway;Gjøvik University College, Norway.
    Ekstedt, Mirjam
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Karolinska Institutet, Sweden.
    Digitalization of Patient Information Process from Hospital to Community (Home) Care Nurses: International Perspectives2018In: Nursing Informatics 2018: ICT to improve quality and safety at the point of care / [ed] Ann Kristin Rotegård, Diane J. Skiba, Sayonara Barbosa & Angelica G. Davalos Alcázar, IOS Press, 2018, Vol. 250, p. 227-229Conference paper (Refereed)
    Abstract [en]

    For older people who transition from hospital to home, home care is an increasingly important and effective way of managing chronic illness with skilled nursing care in the home. Communication between clinicians across care settings is fundamental for continuity of care. Poor communication of patient information is acknowledged to be a root cause of sentinel events. In Scandinavia and the United States, researchers study the communication of patient information from hospital to home care. The health care systems of these two countries differ. Differences are reflected in the characteristics of patients transferred from hospital to home care, as well as the characteristics of health information systems (ICT). These differences help to elucidate key issues related to the transfer of patient information from hospital to home care.

  • 68.
    Stenberg, Una
    et al.
    Oslo University Hospital, Norway.
    Cvancarova, Milada
    Oslo University Hospital, Norway.
    Ekstedt, Mirjam
    Oslo University Hospital, Norway;KTH Royal Institute of Technology.
    Olsson, Mariann
    Karolinska Institutet;Stockholms Sjukhem.
    Ruland, Cornelia
    Oslo University Hospital, Norway;University of Oslo, Norway.
    Family Caregivers of Cancer Patients: Perceived Burden and Symptoms During the Early Phases of Cancer Treatment2014In: Social work in health care, ISSN 0098-1389, E-ISSN 1541-034X, Vol. 53, no 3, p. 289-309Article in journal (Refereed)
    Abstract [en]

    This study investigated levels of symptoms, caregiver burden, and changes over time in 278 family caregivers (FC) of cancer patients. FCs experienced high levels of depressive symptoms and sleep disturbance, low levels of fatigue, and low to moderate levels of caregiver burden, yet these symptoms remained relatively stable over time. Being female and not being employed were factors associated with an increased risk of symptoms and caregiver burden. The understanding evolving from this study can enhance social- and health care professionals' awareness of FCs' challenging situation and the potential impact this has on the FCs' ability to provide care to the patient.

  • 69.
    Stenberg, Una
    et al.
    Oslo University Hospital, Norway.
    Ekstedt, Mirjam
    Oslo University Hospital, Norway;KTH Royal Institute of Technology.
    Olsson, Mariann
    Karolinska Institutet.
    Ruland, Cornelia M.
    Oslo University Hospital, Norway;University of Oslo, Norway.
    Living Close to a Person With Cancer: A Review of the International Literature and Implications for Social Work Practice2014In: Journal of gerontological social work, ISSN 0163-4372, E-ISSN 1540-4048, Vol. 57, no 6-7, p. 531-555Article, review/survey (Refereed)
    Abstract [en]

    To help family caregivers (FCs), social workers need to understand the complexity of FC's experiences and challenges. For this systematic review, several relevant, multidisciplinary electronic databases were searched. Of 1,643 titles identified, 108 articles met the inclusion criteria and are included in this review. Various experiences, symptoms, and burden related to caregiving responsibilities are described and discussed. The understanding evolving from this study about the FC's own health risk, caregiver burden, and experiences over time can enhance a social worker's awareness of an FC's challenging situation and the potential impact this has on the FC's ability to provide care to the patient.

  • 70.
    Stenberg, Una
    et al.
    Oslo University Hospital, Norway;University of Oslo, Norway.
    Ekstedt, Mirjam
    Oslo University Hospital, Norway;KTH Royal Institute of Technology, Sweden.
    Ruland, Cornelia
    Oslo University Hospital, Norway;University of Oslo, Norway.
    Olsson, Mariann
    Karolinska Institutet, Sweden.
    To Live Close To A Person With Cancer: Experiences Of Family Caregivers2012In: Annals of Behavioral Medicine, ISSN 0883-6612, E-ISSN 1532-4796, Vol. 43, no Suppl. 1, p. S11-S11, article id A-024Article in journal (Refereed)
    Abstract [en]

    A cancer diagnosis affects not only the patient, but also Family Caregivers (FCs) and close friends. The purpose of this study was to obtain an in-depth understanding of the experiences of FCs living close to a person with cancer. A convenience sample of 15 FCs, five men and 10 women age 35 to 77, was recruited through the Norwegian Cancer Society’special interest groups. Nine were spouses, five were sons/daughters and one was a sister. FCs participated in individual interviews using a thematic interview guide. Audio-taped interviews were transcribed and analyzed using qualitative hermeneutic analysis. Two major themes emerged from the interviews: The first theme that became apparent was that living close to a cancer patient over the course of his or her illness affected many aspects of FCs’ lives in significant ways. Most challenging were changes and disruptions in daily life, more responsibilities on the part of the FC, changes in roles, social life, in relationships and personal strength in different ways than before. The second major theme was that living close to a cancer patient is to live and work in a world of constant tension, conflicting interests and dilemmas. FCs experienced a constant need to balance different demands, needs, the known with the unknown, and to manage uncertainty and the experience of being helpless and skilled at the same time. This study contributed to deeper insights into FCs experiences than previously reported in the literature. It also became apparent that FCs could greatly benefit from support that help them fulfill their desired roles as primary source of social and emotional support for patients, while being able to maintain their own health and well-being at the same time.

  • 71.
    Stenberg, Una
    et al.
    Oslo University Hospital, Norway.
    Ruland, Cornelia
    Oslo University Hospital, Norway;University of Oslo, Norway.
    Olsson, Mariann
    Karolinska Institutet.
    Ekstedt, Mirjam
    Oslo University Hospital, Norway;KTH Royal Institute of Technology.
    To Live Close to a Person With Cancer: Experiences of Family Caregivers2012In: Social work in health care, ISSN 0098-1389, E-ISSN 1541-034X, Vol. 51, no 10, p. 909-926Article in journal (Refereed)
    Abstract [en]

    The purpose of this study was to obtain a deeper understanding of the experiences of Family Caregivers (FC) living close to a patient with cancer. This article reports on the findings from individual interviews with 15 FCs of patients with cancer. The interview transcripts were analyzed using qualitative hermeneutic analysis. This study revealed that living close to a cancer patient over the course of his or her illness affected many aspects of FCs lives in significant ways. Their experiences can be summarized with two major themes: (1) living in an ever changing life world and (2) balancing between conflicting interests and dilemmas. This study contributed to deeper insights into FC's experiences than previously reported in the literature.

  • 72.
    Svensson, V.
    et al.
    Karolinska Institutet.
    Ek, A.
    Karolinska Institutet.
    Forssén, M.
    Karolinska Institutet.
    Ekbom, K.
    Karolinska Institutet.
    Cao, Y.
    Karolinska Institutet.
    Ebrahim, M.
    Karolinska Institutet.
    Johansson, E.
    Karolinska Institutet.
    Nero, H.
    Karolinska Institutet.
    Hagströmer, M.
    Karolinska Institutet.
    Ekstedt, Mirjam
    KTH Royal Institute of Technology.
    Nowicka, P.
    Karolinska Institutet.
    Marcus, C.
    Karolinska Institutet.
    Infant growth is associated with parental education but not with parental adiposity: Early Stockholm Obesity Prevention Project2014In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 103, no 4, p. 418-425Article in journal (Refereed)
    Abstract [en]

    AimTo explore the simultaneous impact of parental adiposity and education level on infant growth from birth to 12months, adjusting for known early-life risk factors for subsequent childhood obesity. MethodsBaseline data for 197 one-year-old children and their parents, participating in a longitudinal obesity intervention, were used. Obesity risk groups, high/low, were defined based on parental body mass index (n=144/53) and parental education (n=57/139). Observational data on infant growth between 0 and 12months were collected. The children's relative weight (body mass index standard deviation score) at 3, 6 and 12months and rapid weight gain 0-6months were analysed in regression models, with obesity risk as primary exposure variables, adjusting for gestational weight gain, birth weight, short exclusive breastfeeding and maternal smoking. ResultsRelative weight at 3, 6 and 12months was associated with low parental education but not with parental adiposity. No significant associations were observed with rapid weight gain. None of the early-life factors could explain the association with parental education. ConclusionLow parental education level is independently associated with infant growth, whereas parental obesity does not contribute to a higher weight or to rapid weight gain during the first year.

  • 73.
    Söderström, Marie
    et al.
    National Institute of Psychosocial Factors and Health.
    Ekstedt, Mirjam
    National Institute of Psychosocial Factors and Health.
    Akerstedt, Torbjörn
    National Institute of Psychosocial Factors and Health ; Karolinska Institutet.
    Weekday and weekend patterns of diurnal cortisol, activation and fatigue among people scoring high for burnout2006In: SJWEH Supplements, ISSN 1795-9926, E-ISSN 1795-9918, no 2, p. 35-40Article in journal (Refereed)
    Abstract [en]

    Objectives The present pilot study attempted to investigate the diurnal pattern of cortisol, subjective activation, and mental fatigue among workers scoring high for burnout. The purpose was also to relate the cortisol data to objective sleep data.

    Methods One group with high (N=9) burnout scores and one with low (N=11) such scores were compared during a workday and a day off.

    Results The high-burnout group showed higher awakening cortisol during the workday than during the weekend. They also showed higher ratings for activation and mental fatigue during the weekend than the low-burnout group. A higher frequency of arousals during the prior sleep was associated with a higher diurnal amplitude and an earlier diurnal peak of cortisol during the workday.

    Conclusions The present results, which, due to the small sample size, should be interpreted with caution, may indicate that stress-induced frequency of arousal during sleep could contribute to the diurnal amplitude of cortisol. Furthermore, increased activation and mental fatigue during the weekend may reflect impaired recovery, which is of possible importance in the burnout process.

  • 74.
    Söderström, Marie
    et al.
    Karolinska Institutet.
    Ekstedt, Mirjam
    Karolinska Institutet.
    Åkerstedt, Torbjörn
    Karolinska Institutet.
    Nilsson, Jens
    Karolinska Institutet.
    Axelsson, John
    Karolinska Institutet.
    Sleep and sleepiness in young individuals with high burnout scores2004In: Sleep, ISSN 0161-8105, E-ISSN 1550-9109, Vol. 27, no 7, p. 1369-1377Article in journal (Refereed)
    Abstract [en]

    Study Objectives: Burnout is a growing health problem in Western society. This study aimed to investigate sleep in subjects scoring high on burnout but still at work. The purpose was also to study the diurnal pattern of sleepiness, as well as ratings of work stress and mood in groups with different burnout scores.

    Design: Sleep was recorded in 2 groups (high vs low on burnout) during 2 nights; 1 before a workday and 1 before a day off, in a balanced order. Sleepiness ratings as well as daytime diary ratings were analyzed for the workday and the day off after the sleep recordings.

    Setting: The polysomnographic recordings were made in the subjects' home.

    Participants: Twenty-four healthy individuals (14 women and 10 men) between the ages of 24 and 43 years participated.

    Interventions: N/A.

    Measurements and Results: A higher frequency of arousals during sleep (Workday: high burnout = 12 +/- 1 per hour, low burnout = 8 +/- 1 per hour; Day off: high burnout = 12 2 per hour, low burnout = 8 +/- 1 per hour), and more subjective awakening problems were found in the high-burnout group. The diurnal pattern of sleepiness indicated that the high-burnout group did not recover in the same way as did the low-burnout group on the day off. Indicators of impaired recovery were also seen within the high-burnout group as a higher degree of bringing work home and working on weekends, as well as more complaints of work interfering with leisure time.

    Conclusions: Young subjects with high burnout scores, but who are still working, show more arousals during sleep and an absence of reduced sleepiness during days off.

  • 75.
    Söderström, Marie
    et al.
    Karolinska Institutet.
    Jeding, Kerstin
    Stockholm University.
    Ekstedt, Mirjam
    KTH Royal institute of technology.
    Perski, Aleksander
    Stockholm University.
    Åkerstedt, Torbjörn
    Stockholm University ; Karolinska Institutet.
    Insufficient sleep predicts clinical burnout2012In: Journal of Occupational Health Psychology, ISSN 1076-8998, E-ISSN 1939-1307, Vol. 17, no 2, p. 175-183Article in journal (Refereed)
    Abstract [en]

    The present prospective study aimed to identify risk factors for subsequent clinical burnout. Three hundred eighty-eight working individuals completed a baseline questionnaire regarding work stress, sleep, mood, health, and so forth. During a 2-year period, 15 subjects (7 women and 8 men) of the total sample were identified as "burnout cases," as they were assessed and referred to treatment for clinical burnout. Questionnaire data from the baseline measurement were used as independent variables in a series of logistic regression analyses to predict clinical burnout. The results identified "too little sleep (<6 h)" as the main risk factor for burnout development, with adjustment for "work demands," "thoughts of work during leisure time," and "sleep quality." The first two factors were significant predictors in earlier steps of the multivariate regression. The results indicate that insufficient sleep, preoccupation with thoughts of work during leisure time, and high work demands are risk factors for subsequent burnout. The results suggest a chain of causation.

  • 76.
    Varsi, Cecilie
    et al.
    Oslo University Hospital, Norway.
    Ekstedt, Mirjam
    Oslo University Hospital, Norway;KTH Royal Institute of Technology.
    Elin Børøsund, Cornelia
    Oslo University Hospital, Norway.
    Gammon, Deede
    Oslo University Hospital, Norway;Norwegian Centre for Integrated Care and Telemedicine, Norway.
    Ruland, Cornelia M.
    Oslo University Hospital, Norway;University of Oslo, Norway.
    Barriers Related To The Implementation Of An Informatics Intervention Into Regular Clinical Practice: A Leadership Perspective2012In: Annals of Behavioral Medicine, ISSN 0883-6612, E-ISSN 1532-4796, Vol. 43, no S1, p. S197-S197, article id C-125Article in journal (Refereed)
    Abstract [en]

    The importance of studying real world implementation of efficacious interventions and the roles of key players for implementation success, such as leadership, is highly recognized. This study explored clinical managers’ experiences and perceptions about the implementation of an informatics intervention called Choice into regular clinical practice. Choice is designed to support patient-provider communication and had shown to be efficacious in a previous RCT.

    6 nurses and 3 physicians in leadership positions at the 5 units in which Choice was implemented were interviewed post-implementation according to a structured interview guide. The following barriers emerged from the transcribed interviews: In spite of extensive preparation and training prior to implementation, more was needed; there was still resistance to change practice and a lack of motivation among some care providers. Also, time pressure and high turn-over rates required continuous re-training that hampered intervention use. Managers perceived sustained support from and collaboration with the interventionists as vital for the integration of Choice into routine practice.

    This study confirms that attitudes, established practices and clinical cultures are deeply rooted and hard to change. More research is needed to identify strategies for overcoming these barriers, and how leadership may be better supported to utilize the key role they play for implementation success.

  • 77.
    Varsi, Cecilie
    et al.
    Oslo University Hospital, Norway;University of Oslo, Norway.
    Ekstedt, Mirjam
    Oslo University Hospital, Norway;KTH Royal Institute of Technology.
    Gammon, Deede
    Oslo University Hospital, Norway;University Hospital in North Norway, Norway.
    Børøsund, Elin
    Oslo University Hospital, Norway;University of Oslo, Norway.
    Ruland, Cornelia M.
    Oslo University Hospital, Norway;University of Oslo, Norway.
    Middle managers' experiences and role in implementing an interactive tailored patient assessment eHealth intervention in clinical practice2015In: Computers, Informatics, Nursing, ISSN 1538-2931, E-ISSN 1538-9774, Vol. 33, no 6, p. 249-257Article in journal (Refereed)
    Abstract [en]

    The role of nurse and physician managers is considered crucial for implementing eHealth interventions inclinical practice, but fewstudieshaveexplored this. The aim of the current study was to examine the perceptions of nurse and physicianmanagers regarding facilitators, barriers, management role, responsibility, and action taken in the implementation of an eHealth intervention called Choice into clinical practice. Individual qualitative interviews were conducted with six nurses and three physicians in management positions at five hospital units. The findings revealed that nurse managers reported conscientiously supporting the implementation, but workloads prevented them from participating in the process as closely as they wanted. Physicianmanagers reported less contribution. The implementation process was influenced by facilitating factors such as perceptions of benefits from Choice and use of implementation strategies, along with barriers such as physician resistance, contextual factors and difficulties for front-line providers in learning a new way of communicating with the patients. The findings suggest that role descriptions for both nurse and physician managers should include implementation knowledge and implementation skills. Managers could benefit from an implementation toolkit. Implementation management should be included in management education for healthcare managers to prepare them for the constant need for implementation and improvement in clinical practice.

  • 78.
    Varsi, Cecilie
    et al.
    Oslo University Hospital, Norway;University of Oslo, Norway.
    Ekstedt, Mirjam
    Oslo University Hospital, Norway;KTH Royal Institute of Technology.
    Gammon, Deede
    Oslo University Hospital, Norway;University Hospital in North Norway, Norway.
    Ruland, Cornelia M.
    Oslo University Hospital, Norway;University of Oslo, Norway.
    Using the Consolidated Framework for Implementation Research to Identify Barriers and Facilitators for the Implementation of an Internet-Based Patient-Provider Communication Service in Five Settings: A Qualitative Study2015In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 17, no 11, article id e262Article in journal (Refereed)
    Abstract [en]

    Background: Although there is growing evidence of the positive effects of Internet-based patient-provider communication (IPPC) services for both patients and health care providers, their implementation into clinical practice continues to be a challenge.

    Objective: The 3 aims of this study were to (1) identify and compare barriers and facilitators influencing the implementation of an IPPC service in 5 hospital units using the Consolidated Framework for Implementation Research (CFIR), (2) assess the ability of the different constructs of CFIR to distinguish between high and low implementation success, and (3) compare our findings with those from other studies that used the CFIR to discriminate between high and low implementation success.

    Methods: This study was based on individual interviews with 10 nurses, 6 physicians, and 1 nutritionist who had used the IPPC to answer messages from patients.

    Results: Of the 36 CFIR constructs, 28 were addressed in the interviews, of which 12 distinguished between high and low implementation units. Most of the distinguishing constructs were related to the inner setting domain of CFIR, indicating that institutional factors were particularly important for successful implementation. Health care providers' beliefs in the intervention as useful for themselves and their patients as well as the implementation process itself were also important. A comparison of constructs across ours and 2 other studies that also used the CFIR to discriminate between high and low implementation success showed that 24 CFIR constructs distinguished between high and low implementation units in at least 1 study; 11 constructs distinguished in 2 studies. However, only 2 constructs (patient need and resources and available resources) distinguished consistently between high and low implementation units in all 3 studies.

    Conclusions: The CFIR is a helpful framework for illuminating barriers and facilitators influencing IPPC implementation. However, CFIR's strength of being broad and comprehensive also limits its usefulness as an implementation framework because it does not discriminate between the relative importance of its many constructs for implementation success. This is the first study to identify which CFIR constructs are the most promising to distinguish between high and low implementation success across settings and interventions. Findings from this study can contribute to the refinement of CFIR toward a more succinct and parsimonious framework for planning and evaluation of the implementation of clinical interventions.

  • 79.
    Wibe, Torunn
    et al.
    Abildsø Nursing Home, Norway;University of Oslo, Norway.
    Ekstedt, Mirjam
    Oslo University Hospital, Norway;KTH Royal Institute of Technology.
    Hellesø, Ragnhild
    University of Oslo, Norway.
    Information Practices of health care professionals related to patient discharge from hospital2015In: Informatics for Health and Social Care, ISSN 1753-8157, E-ISSN 1753-8165, Vol. 40, no 3, p. 198-209Article in journal (Refereed)
    Abstract [en]

    Objective: To investigate the practices of hospital professionals in providing information to patients and to professionals in primary care at patient discharge from hospital.

    Methods: We used a qualitative methodology with individual face-to-face interviews with 22 hospital physicians and nurses.

    Results: We identified two themes in the information practices of health care professionals at patient discharge from hospital: (i) producing information in parallel processes and (ii) challenges in tailoring information to different recipients.

    Conclusion: Hospital routines and professional norms prescribing that discharge information should take place in parallel processes by hospital physicians and by nurses impede transparency and interdisciplinary coordination in primary care. A strong focus on providing patients only with information that is tailored for them neglects the interest patients may have in seeing what information about them is transmitted to primary care.

    Practice implications: Hospital routines and professional culture are important factors to consider in efforts to promote more transparent health care for patients and improved interdisciplinary communication. This is not only a matter of attitudes in the individual health care professional. In the development of solutions for electronic exchange of information in health care, all these factors should be taken into account.

  • 80.
    Wibe, Torunn
    et al.
    Oslo University Hospital, Norway;Abildsø Nursing Home, Norway;University of Oslo, Norway.
    Ekstedt, Mirjam
    Oslo University Hospital, Norway;KTH Royal Institute of Technology.
    Hellesø, Ragnhild
    University of Oslo, Norway.
    Varsi, Cecilie
    Oslo University Hospital, Norway;University of Oslo, Norway.
    Ruland, Cornelia
    Oslo University Hospital, Norway.
    “You Are Not at All Bothersome”: Nurses’ Online Communication with Testicular Cancer Patients2012In: NI 2012: 11th International Congress on Nursing Informatics, June 23-27, 2012, Montreal, Canada, American Medical Informatics Association , 2012, p. 453-457Conference paper (Refereed)
    Abstract [en]

    To some extent, electronic communication has supplemented nurses’ face-to-face contact with patients over the last few years. In this paper, we report findings from a study in which we examined cancer nurses’ answers to messages from testicular cancer patients in a nurse-managed online patient-provider communication service. The aim of the study was to investigate how nurses manage to meet patients’ different questions and concerns, and what aspects of expert nursing care are demonstrated when they communicate with patients online. The content of the messages formed a continuum from practical to existential issues. In their answers, the nurses demonstrated an ability to make reflected choices between both support modalities and means of communication. The professional knowledge and care of expert cancer nurses were clearly exposed in the nurses’ answers, although they were good at adapting their professional language so that it would be understandable to the patients.

  • 81.
    Wibe, Torunn
    et al.
    Oslo University Hospital, Norway;Abildsø Nursing Home, Norway;Oslo University, Norway.
    Hellesø, Raghild
    Oslo University, Norway.
    Slaughter, Laura
    Oslo University Hospital, Norway;Norwegian University of Science and Technology, Norway.
    Ekstedt, Mirjam
    Oslo University Hospital, Norway;Ersta Sköndal Bräcke University College.
    Lay people's experiences with reading their medical record2011In: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 72, no 9, p. 1570-1573Article in journal (Refereed)
    Abstract [en]

    An increasing number of patients now make use of their legal right to read their medical record. We report findings from a study in which we conducted qualitative interviews with 17 Norwegian adult patients about their experiences of requesting a copy of their medical record following a hospital stay. Interviews took place between May, 2008 and April 2009. The analytical process, guided by qualitative content analysis, identified two main themes; "keeping a sense of control" and "not feeling respected as a person". The informants' experiences with reading their own medical record were often connected to their experiences in direct communication with health care professionals during the hospital stay, revealing a delicate interaction between trust and power. The informants were hoping for a more mutual exchange of information and knowledge from which they could benefit in the management of their own health. We conclude that to meet patients' expectations of mutuality, health care professionals in hospitals need to be more conscious about their attitudes and communication skills as well as how they exercise their power to define the patient's situation. At the same time, there should be more focus on how structural changes in the organization of hospitals may have impaired the capacity of health care professionals to meet these expectations. In the future, greater attention should also be paid to information exchange to avoid placing unreasonable responsibility on the patient to compensate for deficits in the health care system.

  • 82.
    Wibe, Torunn
    et al.
    University of Oslo, Norway.
    Hellesø, Ragnhild
    University of Oslo, Norway.
    Ekstedt, Mirjam
    University of Oslo, Norway ; KTH Royal Institute of Technology.
    How can patient access to clinical documentaion promote patient safety and quality of care?2014In: 3rd Nordic Conference on Research in Patient Safety and Quality in Healthcare, 2014, October 2-3, Stavanger, Norway, 2014Conference paper (Refereed)
  • 83.
    Wibe, Torunn
    et al.
    Oslo University Hospital, Norway;University of Oslo, Norway;Abildsø Nursing Home, Norway.
    Hellesø, Ragnhild
    University of Oslo, Norway.
    Varsi, Cecilie
    Oslo University Hospital, Norway.
    Ruland, Cornelia
    Oslo University Hospital, Norway;University of Oslo, Norway.
    Ekstedt, Mirjam
    Oslo University Hospital, Norway;KTH Royal Institute of Technology.
    How does an online patient-nurse communication service meet the information needs of men with recently diagnosed testicular cancer?2012In: ISRN Nursing, ISSN 2090-5483, E-ISSN 2090-5491, Vol. 2012, article id 260975Article in journal (Refereed)
    Abstract [en]

    Online communication has become a potential means of communication between patients and health care providers, but so far few studies are published about online communication as part of nursing care. The aim of this study was to explore how an online patient-nurse communication (OPNC) service meets the information needs of men with newly diagnosed testicular cancer. We applied a qualitative approach by examining the content of online messages sent by patients to nurses in a specialist cancer unit. In addition, individual interviews were conducted with patients who had used the OPNC service. Four themes became distinct through a synthesis of the material from the interviews and the messages: "a means for managing illness-related concerns at home," "a means for ensuring information flow," "a means for strategic information seeking," and "not yet available when needed most." Individualized information provided by nurses with access to their medical record was shown to be important to these patients. The findings of this study indicate that not only may access to an OPNC service help patients fulfill their otherwise unmet information needs, but also it may prevent delays and discontinuity in care due to informational gaps and lead to improved patient safety.

  • 84.
    Winger, Anette
    et al.
    Oslo and Akershus University College of Applied Sciences, Norway.
    Ekstedt, Mirjam
    KTH Royal Institute of Technology ; Oslo University Hospital, Norway.
    Wyller, Vegard B.
    Oslo University Hospital, Norway ; University of Oslo, Norway ; Akershus University Hospital, Norway.
    Helseth, Solvi
    Oslo University College of Applied Sciences, Norway ; University of Agder, Norway.
    'Sometimes it feels as if the world goes on without me': adolescents' experiences of living with chronic fatigue syndrome2014In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 23, no 17-18, p. 2649-2657Article in journal (Refereed)
    Abstract [en]

    Aims and objectives. To explore the experience of being an adolescent with chronic fatigue syndrome. Background. Despite ample research, chronic fatigue syndrome is still poorly understood, and there are still controversies related to the illness. Adolescents with chronic fatigue syndrome are often unable to attend school and lose social relations with friends. The challenges they face will affect their quality of life. Design. A qualitative, phenomenological hermeneutical design. Method. Six boys and twelve girls, aged 12-18, were interviewed, emphasising their own experiences living with chronic fatigue syndrome. Analyses were performed using a phenomenological hermeneutical method. Results. The core theme, 'Sometimes it feels as if the world goes on without me', encompasses the feelings an adolescent living with chronic fatigue syndrome might have about life. The core theme was supported by four subthemes: 'On the side of life - locked in and shut out'; 'the body, the illness and me'; 'if the illness is not visible to others, does it exist?'; and 'handling life while hoping for a better future'. The subthemes reflect the experience of social isolation, their own and others' understanding of the illness and hope for the future. Conclusions. Not being able to be with friends, or attend school, made the adolescents feel different and forgotten. They felt alienated in their own bodies and were struggling to be visible to themselves and to their surroundings. Spending less time with friends and more time with their parents constituted a threat to independence and development. Yet they managed to envision a better future despite all the difficulties. Relevance for clinical practice. To provide effective support and constructive relations to adolescents with chronic fatigue syndrome, all health professions involved need insight from the persons who are themselves ill. Health centres could function as resource centres for patients and healthcare professionals.

  • 85.
    Winger, Anette
    et al.
    Oslo and Akershus University College of Applied Sciences, Norway.
    Kvarstein, Gunnvald
    UIT The Arctic University of Norway, Norway.
    Wyller, Vegard Bruun
    University of Oslo, Norway;Oslo University Hospital, Norway;Akershus University Hospital, Norway.
    Ekstedt, Mirjam
    KTH Royal Institute of Technology;Oslo University Hospital, Norway.
    Sulheim, Dag
    Oslo University Hospital, Norway;Innlandet Hospital Trust, Norway.
    Fagermoen, Even
    University of Oslo, Norway.
    Smastuen, Milada Cvancarova
    Oslo and Akershus University College of Applied Sciences, Norway.
    Helseth, Solvi
    Oslo and Akershus University College of Applied Sciences, Norway.
    Health related quality of life in adolescents with chronic fatigue syndrome: a cross-sectional study2015In: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 13, article id 96Article in journal (Refereed)
    Abstract [en]

    Aim: To study health related quality of life (HRQOL) and depressive symptoms in adolescents with chronic fatigue syndrome (CFS) and to investigate in which domains their HRQOL and depressive symptoms differ from those of healthy adolescents.

    Background and objective: Several symptoms such as disabling fatigue, pain and depressive symptoms affect different life domains of adolescents with CFS. Compared to adolescents with other chronic diseases, young people with CFS are reported to be severely impaired, both physiologically and mentally. Despite this, few have investigated the HRQOL in this group.

    Method: This is a cross-sectional study on HRQOL including 120 adolescents with CFS and 39 healthy controls (HC), between 12 and 18 years. The Pediatric Quality of Life Inventory (TM), 4.0 (PedsQL) was used to assess HRQOL. The Mood and Feelings Questionnaire assessed depressive symptoms. Data were collected between March 2010 and October 2012 as part of the NorCAPITAL project (Norwegian Study of Chronic Fatigue Syndrome in Adolescents: Pathophysiology and Intervention Trial). Linear and logistic regression models were used in analysis, and all tests were two-sided.

    Results: Adolescents with CFS reported significantly lower overall HRQOL compared to HCs. When controlling for gender differences, CFS patients scored 44 points lower overall HRQOL on a scale from 0-100 compared to HCs. The domains with the largest differences were interference with physical health (B = -59, 95 % CI -54 to -65) and school functioning (B = -52, 95 % CI -45 to -58). Both depressive symptoms and being a patient were independently associated with lower levels of HRQOL

    Conclusion: The difference in HRQOL between CFS patients and healthy adolescents was even larger than we expected. The large sample of adolescents with CFS in our study confirms previous findings from smaller studies, and emphasizes that CFS is a seriously disabling condition that has a strong impact on their HRQOL. Even though depressive symptoms were found in the group of patients, they could not statistically explain the poor HRQOL.

  • 86.
    Xiu, L.
    et al.
    Karolinska Institutet.
    Hagstromer, M.
    Karolinska Institutet.
    Bergqvist, L.
    Karolinska Institutet.
    Johansson, E.
    Karolinska Institutet.
    Ekbom, K.
    Karolinska Institutet.
    Svensson, V.
    Karolinska Institutet.
    Marcus, C.
    Karolinska Institutet.
    Ekstedt, Mirjam
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Karolinska Institutet.
    Weekday-weekend sleep variations in young children and the associated family factors2018In: Journal of Sleep Research, ISSN 0962-1105, E-ISSN 1365-2869, Vol. 27Article in journal (Other academic)
  • 87.
    Xiu, Lijuan
    et al.
    Karolinska Institutet, Sweden.
    Ekstedt, Mirjam
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Karolinska Institutet, Sweden.
    Hagströmer, Maria
    Karolinska Institutet, Sweden;Sophiahemmet University, Sweden;Karolinska University Hospital, Sweden.
    Bruni, Oliviero
    Sapienza University, Italy.
    Bergqvist-Norén, Linnea
    Karolinska Institutet, Sweden.
    Marcus, Claude
    Karolinska Institutet, Sweden.
    Sleep and adiposity in children from 2 to 6 years of age2020In: Pediatrics, ISSN 0031-4005, E-ISSN 1098-4275, Vol. 145, no 3, p. 1-11, article id e20191420Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: To compare sleep in young children at different obesity risks, which were based on parental weight, as well as to explore the longitudinal associations of sleep characteristics with adiposity.

    METHODS: In total, 107 children from an obesity prevention project were included, of which 43 had normal-weight parents (low obesity risk) and 64 had overweight and/or obese parents (high obesity risk). Sleep was measured yearly from ages 2 to 6 years by using actigraphy. Five sleep characteristics, that of late sleep, long sleep latency, short sleep duration, low sleep efficiency, and irregular sleep onset, were defined and scored across ages, with a higher score indicating more frequent exposure. The outcome variables, also measured yearly, were BMI z score and waist circumference.

    RESULTS: There was no difference in sleep patterns among children at different risks. Higher short sleep duration score was associated with a greater increase in BMI z score (0.12; 95% confidence interval [CI] 0.01 to 0.25) across ages. Independently of sleep duration, higher late sleep score was associated with greater increases in BMI z score (0.16; 95% CI 0.05 to 0.27) and waist circumference (0.60 cm; 95% CI 0.23 to 0.98). Moreover, compared with children at low risk and without habitual late sleep, children at high risk and with habitual late sleep had greater increases in BMI z score (0.93; 95% CI 0.40 to 1.45) and waist circumference (3.45 cm; 95% CI 1.78 to 5.12).

    CONCLUSIONS: More frequent exposures to late sleep were associated with greater increases in adiposity measures from ages 2 to 6 years, particularly in children with obese parents.

  • 88.
    Xiu, Lijuan
    et al.
    Karolinska Institutet, Sweden.
    Hagströmer, Maria
    Karolinska Institutet, Sweden.
    Bergqvist-Norén, Linnea
    Karolinska Institutet, Sweden.
    Johansson, Elin
    Karolinska Institutet, Sweden.
    Ekbom, Kerstin
    Karolinska Institutet, Sweden.
    Svensson, Viktoria
    Karolinska Institutet, Sweden.
    Marcus, Claude
    Karolinska Institutet, Sweden.
    Ekstedt, Mirjam
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Karolinska Institutet, Sweden.
    Development of sleep patterns in children with obese and normal-weight parents2019In: Journal of Paediatrics and Child Health, ISSN 1034-4810, E-ISSN 1440-1754, Vol. 55, no 7, p. 809-818Article in journal (Refereed)
    Abstract [en]

    Aim

    To study the sleep development and sleep characteristics in children at different obesity risks, based on parental weight, and also to explore their weekday–weekend sleep variations and associated family factors.

    Methods

    A total of 145 children participating in a longitudinal obesity prevention project were included, of which 37 had normal‐weight parents (low obesity risk), and 108 had overweight/obese parents (high obesity risk). Sleep diaries at ages 1 and 2 years were used to study sleep development in children at different obesity risks. Objectively assessed sleep using an accelerometer at 2 years of age was used to analyse weekday–weekend sleep variations.

    Results

    There was no difference in sleep development from age 1 to age 2 among children at different obesity risks, but more children in the high‐risk group had prolonged sleep onset latency and low sleep efficiency. At 2 years of age, children in the high‐risk group had more weekday–weekend variation in sleep offset (mean difference 18 min, 95% confidence interval (CI) 4–33 min), midpoint of sleep (mean difference 14 min, 95% CI 3–25 min) and nap onset (mean difference 42 min, 95% CI 10–74 min) than children in the low‐risk group, after adjusting for other family factors. However, no difference could be detected between groups in weekday–weekend variation in sleep duration.

    Conclusions

    Unfavourable sleep characteristics, as well as more variation in sleep schedules, have been observed in children at high obesity risk. While the differences were relatively small, they may reflect the unfavourable sleep hygiene in families at high obesity risk.

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  • 89. Åsberg, Marie
    et al.
    Nygren, Åke
    Leopardi, Rosario
    Rylander, Gunnar
    Peterson, Ulla
    Karolinska Institutet.
    Wilczek, Lukas
    Källmén, Håkan
    Ekstedt, Mirjam
    Karolinska Institute.
    Åkerstedt, Torbjörn
    Lekander, Mats
    Ekman, Rolf
    Novel biochemical markers of psychosocial stress in women2009In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 4, no 1, p. e3590-Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Prolonged psychosocial stress is a condition assessed through self-reports. Here we aimed to identify biochemical markers for screening and early intervention in women.

    METHODS: Plasma concentrations of interleukin (IL) 1-alpha, IL1-beta, IL-2, IL-4, IL-6, IL-8, IL-10, interferon-gamma (INF-gamma), tumor necrosis factor-alpha (TNF-alpha), monocyte chemotactic protein-1 (MCP-1), epidermal growth factor (EGF), vascular endothelial growth factor (VEGF), thyroid stimulating hormone (TSH), total tri-iodothyronine (TT3), total thyroxine (TT4), prolactin, and testosterone were measured in: 195 women on long-term sick-leave for a stress-related affective disorder, 45 women at risk for professional burnout, and 84 healthy women.

    RESULTS: We found significantly increased levels of MCP-1, VEGF and EGF in women exposed to prolonged psychosocial stress. Statistical analysis indicates that they independently associate with a significant risk for being classified as ill.

    CONCLUSIONS: MCP-1, EGF, and VEGF are potential markers for screening and early intervention in women under prolonged psychosocial stress.

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