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  • 1.
    Ahlström, Sara Wallin
    et al.
    Mälardalen University, Västerås; Center for Clinical Research Dalarna, Uppsala University, Falun; Habilitation Center in Falun.
    Almqvist, Lena
    Mälardalen University, Västerås.
    Janeslätt, Gunnel
    Center for Clinical Research Dalarna, Uppsala University, Falun; Habilitation Center in Falun, Dalarna; Uppsala University, Uppsala.
    Gustavsson, Catharina
    Dalarna University, School of Health and Welfare, Medical Science. Center for Clinical Research Dalarna, Uppsala University, Falun; Uppsala University, Uppsala.
    Harder, Maria
    Mälardalen University, Västerås.
    The experiences and the meaning of using MyTime in the preschool context from the perspective of children in need of special support, 5-6 years of age2023In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 49, no 6, p. 1096-1103Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Children in need of special support often display delays in time processing ability, affecting everyday functioning. MyTime is an intervention programme for systematic training of time processing ability. To support preschool children's development of time processing ability and everyday functioning, it is necessary to include their perspectives of the MyTime intervention programme. A previous study shows that MyTime is feasible with children in the preschool setting and shows positive effects on time processing ability for older children in special schools. Yet, there is a lack of knowledge regarding how preschool children experience the intervention programme and how they understand its meaning. The aim of this study was to explore the experiences and the meaning of using MyTime from the perspective of children with informal needs of special support (INS) 5-6 years of age in the preschool context.

    METHODS: To explore the children's perspectives, video-recorded interviews with 21 children were analysed hermeneutically. To facilitate the interview situation with the children in need of special support, the Talking Mats© was used. Both body and spoken languages were analysed.

    RESULTS: The results reveal children as active participants, willing to share their experiences of using the MyTime intervention in the preschool context. The conceptualization of the children's experiences and expressions uncovers their meaning of using the MyTime intervention as to know and to understand time by doing.

    CONCLUSIONS: When children are given the opportunity to use concrete tools to understand and measure time, they experience themselves as active participants involved and engaged in the intervention. They reveal meaningful experiences to be able to manage time that facilitate their everyday functioning and participation in the preschool context.

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  • 2. Eklund, Caroline
    et al.
    Elfström, Magnus L
    von Heideken Wågert, Petra
    Söderlund, Anne
    Gustavsson, Catharina
    Dalarna University, School of Health and Welfare, Medical Science. Center for Clinical Research Dalarna, Uppsala University, Falun; Department of Public Health and Caring Sciences, Uppsala University, Uppsala.
    Cederbom, Sara
    Thunborg, Charlotta
    Lööf, Helena
    The Meaning of Sedentary Behavior as Experienced by People in the Transition From Working Life to Retirement: An Empirical Phenomenological Study.2021In: Physical Therapy, ISSN 0031-9023, E-ISSN 1538-6724, Vol. 101, no 8, article id pzab117Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Sedentary behavior (SB) is defined as a mean of >6 hours of daytime sitting or lying down. SB has been shown to increase with older age and is a risk factor for disease. During the transition from working life to retirement, changes in daily life activities occur, risking increased SB. The aim of the present study was to gain a deeper understanding of SB in relation to the transition from working life to retirement as experienced by persons in retirement.

    METHODS: The study was grounded in a phenomenological life-world perspective. Fourteen semi-structured interviews were conducted with participants aged 64-75. Data were analyzed using the empirical phenomenological psychological method.

    RESULTS: The participants described that voluntary sedentary time was positively related to general health and well-being, while involuntary sedentary time was negatively related to health. Increased sedentary time was described as natural when aging. Retirement was expressed as a time for rest after hard work and the ability to choose a slower pace in life. Internal and external demands and daily routines interrupted SB, whereas loneliness was perceived to increase SB. Participants strived to find a balance between physical activity and sedentary time. The variations in the participants' descriptions formed three typologies: in light of meaningful sedentary behavior, in the shadow of involuntary sedentary behavior, and a dual process - postponing sedentary behavior with physical activity.

    CONCLUSIONS: Increased SB was perceived as natural when aging, but something that may be postponed by conscious choices. SB was perceived as associated with health, rest and recovery but also with the risk of deteriorating health.

    IMPACT: This knowledge of the experienced meaning of SB could guide the design of health promotion interventions and may be helpful in targeting those in need of support and individualizing interventions to decrease SB in retirement.

    LAY SUMMARY: This study reveals how persons in retirement describe sedentary behavior as something healthy but also as unhealthy and that sedentary behavior is natural in aging and can be postponed by physical activity.

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  • 3.
    Elf, Marie
    et al.
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Klockar, Erika
    Dalarna University, School of Health and Welfare, Care Sciences. Dalarna University, School of Health and Welfare, Medical Science.
    Kylén, Maya
    Dalarna University, School of Health and Welfare, Caring Science/Nursing. Department of Health Sciences, Lund University, Lund.
    von Koch, Lena
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm; Theme Neuro Karolinska University Hospital, Stockholm.
    Ytterberg, Charlotte
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm; Women's Health and Allied Health Professionals Theme, Medical Unit Occupational Therapy and Physiotherapy, Karolinska University Hospital, Stockholm.
    Wallin, Lars
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Finch, Tracy
    Department of Nursing, Midwifery and Health, Faculty of Health and Life Sciences, Northumbria University, Newcastle upon Tyne, United Kingdom.
    Gustavsson, Catharina
    Dalarna University, School of Health and Welfare, Medical Science. Center for Clinical Research Dalarna, Uppsala University, Falun; Department of Public Health and Caring Sciences, Uppsala University, Uppsala.
    Jones, Fiona
    Faculty of Health and Social Care Sciences, Kingston University and St George's, University of London, London, United Kingdom.
    Tailoring and Evaluating an Intervention to Support Self-management After Stroke: Protocol for a Multi-case, Mixed Methods Comparison Study2022In: JMIR Research Protocols, E-ISSN 1929-0748, Vol. 11, no 5, article id e37672Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Self-management programs are recognized as a valuable approach to supporting people with long-term conditions, such as stroke, in managing their daily lives. Bridges Self-Management (Bridges) focuses on how practitioners interact and support patients' confidence, skills, and knowledge, and it is an example of a complex intervention. Bridges has been developed and used across multiple health care pathways in the United Kingdom and is theoretically informed by social cognition theory and self-efficacy principles. Evidence shows that self-management programs based on the construct of self-efficacy can be effective. There is still much to learn about how health care services or pathways should implement support for self-management in a sustainable way and whether this implementation process is different depending on the context or culture of the team or service provided.

    OBJECTIVE: The aim of this study is to tailor and evaluate an intervention (Bridges) to support self-management after stroke in a Swedish context.

    METHODS: We will use a pretest-posttest design with a case study approach to evaluate the feasibility and implementation of self-management support in two stroke settings. This project includes a complex intervention and depends on the actions of individuals, different contexts, and the adaptation of behavior over time. A mixed methods approach was chosen to understand both outcomes and mechanisms of impact. Data collection will comprise outcome measurements and assessment tools as well as qualitative interviews. Data will be collected concurrently and integrated into a mixed methods design.

    RESULTS: Recruitment and data collection for the first site of the project ran from September 1, 2021, to January 17, 2022. The intervention at the first site was conducted from November 1, 2021, to March 5, 2022. The evaluation will start after the implementation phase. The second site has been recruited, and the baseline data collection will start in spring 2022. The intervention will start in early autumn 2022. Data collection will be completed by the end of 2022.

    CONCLUSIONS: This study represents a unique, highly relevant, and innovative opportunity to maximize knowledge and minimize practice gaps in rehabilitation stroke care. The study will produce robust data on the intervention and in-depth data on the contextual factors and mechanisms related to the feasibility of the intervention and for whom it is feasible. Bridges has been used in the United Kingdom for more than 10 years, and this study will explore its contextualization and implementation within a Swedish stroke environment. The evaluation will study results at the patient, staff, and organizational levels and provide recommendations for the adoption and refinement of future efforts to support self-management.

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  • 4. Eriksson Crommert, M.
    et al.
    Petrov Fieril, K.
    Gustavsson, Catharina
    Dalarna University, School of Education, Health and Social Studies, Medical Science.
    Women’s experiences of living with increased inter-recti distance after childbirth: an interview study2020In: BMC Women's Health, E-ISSN 1472-6874, Vol. 20, no 1, article id 260Article in journal (Refereed)
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  • 5.
    Fridberg, Helena
    et al.
    Dalarna University, School of Education, Health and Social Studies, Care Sciences.
    Gustavsson, Catharina
    Dalarna University, School of Education, Health and Social Studies, Medical Science. b Center for Clinical Research Dalarna, Uppsala University.
    Self-efficacy in activities of daily living and symptom management in people with dizziness: a focus group study2019In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 41, no 6, p. 705-713Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Self-efficacy is associated with health status, health behaviour and health behaviour change in various chronic health conditions.

    PURPOSE: To describe self-efficacy in relation to Activities of daily living and symptom management in people with dizziness.

    MATERIAL AND METHODS: Thirteen women and three men, aged 45-82 years, with persistent dizziness (duration 4 months to 30 years) were recruited from an outpatient physiotherapy unit. A qualitative study was conducted using four focus groups and one individual interview and was then analysed with qualitative content analysis.

    RESULTS: The participants conveyed, in-depth information concerning two predefined main categories. Self-efficacy in Activities of daily living was related to challenging body positions and motions, environments, social activities, work tasks, and complex cognitive behaviours. Self-efficacy in symptom management was related to distress and aggravated symptoms, unfamiliar environment, and unknown people.

    CONCLUSIONS: People with dizziness describe how self-efficacy for specific activities varies according to the perceived difficulty of the task, the context of the activity, and day-to-day variations in general wellbeing. The results underscore the importance of targeting self-efficacy in the rehabilitation of people with dizziness. Our findings can guide the rehabilitation process by providing a deeper understanding of self-efficacy judgements in relation to Activities of daily living and symptom management in people with dizziness. Implication for rehabilitation This study adds important in-depth knowledge to the rehabilitation area on self-efficacy beliefs in relation to Activities of daily living and symptom management in people with dizziness. Self-efficacy for specific activities varies according to the perceived difficulty of the task, the context in which the activity takes place and day-to-day variations in perceived general well-being. The results can be used as a topic list to guide rehabilitation efforts in exploring and intervening aspects of people's everyday activities that are affected by low self-efficacy judgements. Activities perceived to be crucial to everyday life and important for well-being should be targeted in rehabilitation to increase self-efficacy and thereby activity performance and participation in people with dizziness.

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  • 6.
    Gelin, Maria
    et al.
    Dalarna University, School of Health and Welfare, Care Sciences. Dalarna University, School of Health and Welfare, Caring Science/Nursing. Center for Clinical Research Dalarna, Uppsala University, Falun.
    Gesar, Berit
    Center for Clinical Research Dalarna, Uppsala University, Falun; Uppsala University, Uppsala.
    Källberg, Ann-Sofie
    Dalarna University, School of Health and Welfare, Caring Science/Nursing. Center for Clinical Research Dalarna, Uppsala University, Falun.
    Ehrenberg, Anna
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Gustavsson, Catharina
    Dalarna University, School of Health and Welfare, Medical Science. Center for Clinical Research Dalarna, Uppsala University, Falun; Uppsala University, Uppsala.
    Introducing a triage and Nurse on Call model in primary health care - a focus group study of health care staff's experiences2023In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 23, no 1, article id 1299Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: With the increased demand for health care services and with simultaneous staff shortages, new work models are needed in primary health care. In November 2015, a Swedish primary health care centre introduced a work model consisting of a structured patient sorting system with triage and Nurse on Call. The aim of this study was to describe the staff's experiences of introducing the triage and Nurse on Call model at the primary health care centre.

    METHODS: Five focus group discussions with staff (n = 39) were conducted 4 years after the introduction of the work model. Groups were divided by profession: medical secretaries, nursing assistants, physicians, primary health care nurses, and registered nurses. The transcribed text from the discussions was analysed using qualitative inductive content analysis.

    RESULTS: The analysis generated one overarching theme: The introduction of triage and Nurse on Call addresses changed preconditions in primary health care, but the work culture, organization, and acquisition of new knowledge are lagging behind. The overarching theme had five categories: (1) Changed preconditions in primary health care motivate new work models; (2) The triage and Nurse on Call model improves teamwork and may increase the quality of care; (3) Unclear purpose and vague leadership make introducing the work model difficult; (4) Difficulties to adopt the work model as it challenges professional autonomy; and (5) The triage and Nurse on Call model requires more knowledge and competence from nurses in primary health care.

    CONCLUSIONS: This study contributes with knowledge about implications of a new work model in primary health care from the perspective of health care staff. The work model using triage and Nurse on Call in primary health care was perceived by participants to increase availability and optimize the use of resources. However, before introduction of new work models, it is important to identify barriers to and facilitators for successful improvements in the local health care context. Additional education for the health care staff is important if the transition is to be successful. Complementary skills and teamwork, supported by a facilitator seems important to ensure a well-prepared workforce.

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  • 7.
    Gummesson, Karl
    et al.
    Center for Clinical Research Dalarna, Uppsala University.
    Forsell, Karin
    Begripsam, Stockholm.
    Johansson, Stefan
    KTH Royal Institute of Technology, Stockholm; Lund University, Lund.
    Gustavsson, Catharina
    Dalarna University, School of Health and Welfare, Medical Science. Centre for Clinical Research Dalarna, Uppsala University; Uppsala University, Uppsala.
    How Did People with Impairments Perceive Public Information During the COVID-19 Pandemic and What Are Their Suggestions for Accessible Crisis Information?2024In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, Vol. 26, no 1, p. 601-619Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to explore how people with impairments perceived the accessibility of information regarding the COVID-19 pandemic in Sweden and what improvements they suggest to ensure accessibility of information in future societal crises. The study had a descriptive design, involving interviews and focus group discussions with people with impairments and their representative organisations, alongside analysis of public crisis information websites. The results showed that while many people with impairments could use their usual information channels, other found that the adapted information they needed was missing and that the government agencies, regional healthcare organisations and local municipalities were unprepared to produce accessible information. In conclusion, society exhibited shortcomings in providing accessible information to people with impairments during the COVID-19 pandemic. The responsible authorities seemed unprepared to provide accessible information. Proactive planning and training are imperative to ensure the provision of accessible information in future crises.

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  • 8.
    Gustavsson, Catharina
    et al.
    Dalarna University, School of Education, Health and Social Studies, Medical Science. Uppsala University.
    Eriksson-Crommert, M.
    Physiotherapists' and midwives' views of increased inter recti abdominis distance and its management in women after childbirth2020In: BMC Women's Health, E-ISSN 1472-6874, Vol. 20, no 1, article id 37Article in journal (Refereed)
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  • 9.
    Gustavsson, Catharina
    et al.
    Dalarna University, School of Education, Health and Social Studies, Medical Science. Uppsala Univ, Ctr Clin Res Dalarna / Sch Hlth Care & Social Welf, Dept Physiotherapy, Vasteras, Sweden / Uppsala Univ.
    Nordlander, Jessica
    Uppsala Univ, Ctr Clin Res Dalarna.
    Soderlund, Anne
    Sch Hlth Care & Social Welf, Dept Physiotherapy, Vasteras, Sweden.
    Activity and life-role targeting rehabilitation for persistent pain: feasibility of an intervention in primary healthcare2018In: European Journal of Physiotherapy, ISSN 2167-9169, E-ISSN 2167-9177, Vol. 20, no 3, p. 141-151Article in journal (Refereed)
    Abstract [en]

    Background: The activity and life-role targeting rehabilitation programme (ALAR) promotes patient's active involvement in pain rehabilitation. Purpose: to explore the feasibility of ALAR applied in a primary healthcare context. Materials and methods: An intervention was conducted at primary healthcare centres. Patients experiencing persistent pain were randomly assigned to ALAR + MMR or Multimodal pain rehabilitation (MMR). Data were collected by patient questionnaires before and after intervention (9 weeks and 1 year), medical record examination and therapist telephone interviews. Results: Seventy percent of ALAR +MMR participants completed the programme (n = 24). Complete data were obtained for half of the participants (ALAR +MMR n = 15, MMR n = 17). More ALAR +MMR than MMR participants perceived that they had been participating in planning their rehabilitation. The addition of ALAR to MMR induced higher costs short term, but had favourable health-economic effects in the long term. Conclusions: The methods for delivering ALAR in primary healthcare by specially trained physio and occupational therapists were feasible. Therapists' acceptability and perceived usability of the ALAR programme was high. More ALAR + MMR than MMR participants withdrew without completing treatment. Measures to increase patients' acceptability of the ALAR programme are warranted. Flexibility in number of treatment sessions and addressing patients' self-efficacy for undertaking rehabilitation is suggested, thus emphasising a more individualised rehabilitation plan.

  • 10.
    Gustavsson, Catharina
    et al.
    Dalarna University, School of Health and Welfare, Medical Science. Uppsala universitet.
    Nordqvist, Maria
    Uppsala universitet.
    Bergman Bruhn, Åsa
    Dalarna University, School of Culture and Society, Occupational Science.
    Bröms, Kristina
    Uppsala universitet.
    Jerdén, Lars
    Dalarna University, School of Health and Welfare, Medical Science. Uppsala universitet.
    Kallings, Lena V.
    Uppsala universitet ; GIH.
    Wallin, Lars
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Process evaluation of an implementation intervention to facilitate the use of the Swedish Physical Activity on Prescription in primary healthcare2023In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 23, no 1, article id 996Article in journal (Refereed)
    Abstract [en]

    Background The Swedish Physical Activity on Prescription (PAP-S) is a method for healthcare to promote physical activity for prevention and treatment of health disorders. Despite scientific support and education campaigns, the use has been low. The aim of this study was to perform a process evaluation of an implementation intervention targeting the use of the PAP-S method in primary healthcare (PHC). Specifically, we wanted to evaluate feasibility of the implementation intervention, and its effect on the implementation process and the outcome (number of PAP-S prescriptions).

    Methods This was a longitudinal study using the Medical Research Council guidance for process evaluation of a 9-month implementation intervention among healthcare staff at three PHC centres in Sweden. Data was collected by: participatory observations of the implementation process; questionnaires to the staff before, after and 6 months after the implementation intervention; interviews after the implementation intervention; and number of PAP-S prescriptions.

    Results During the implementation intervention, the workplaces’ readiness-to-change and the healthcare staff’s confidence in using the PAP-S method were favourably influenced, as was the number of PAP-S prescriptions. After the implementation intervention, the number of PAP-S prescriptions decreased to about the same number as before the implementation intervention, at two out of three PHC centres. Four of the six implementation strategies appeared to impact on the implementation process: external facilitation; leadership engagement by a committed workplace management; local PAP-S coordinator taking a leading role and acting as local champion; educational outreach concerning how to use the PAP-S method.

    Conclusion The implementation intervention was not sufficient to produce sustained change of the healthcare staff’s behaviour, nor did it achieve favourable long-term outcome on the number of PAP-S prescriptions. The healthcare staffs’ sparse knowledge of the PAP-S method prior to the implementation intervention hampered the implementation. More hands-on education in how to use the PAP-S method introduced early in the implementation process is imperative for successful implementation of the PAP-S method. The findings also suggest that committed workplace management and local PAP-S coordinators, taking leading roles and acting as local champions, need to be firmly established at the PHC centres before the external facilitator withdraws.

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  • 11.
    Gustavsson, Catharina
    et al.
    Dalarna University, School of Education, Health and Social Studies, Medical Science. Center for Clinical Research Dalarna; Mälardalens högskola; Uppsala universitet.
    Nordqvist, Maria
    Bröms, Kristina
    Jerdén, Lars
    Dalarna University, School of Education, Health and Social Studies, Medical Science. Center for Clinical Research Dalarna, Department of Public Health and Caring Sciences, Uppsala University, Falun.
    Kallings, Lena V
    Wallin, Lars
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Karolinska institutet; Göteborgs universitet.
    What is required to facilitate implementation of Swedish physical activity on prescription? - interview study with primary healthcare staff and management2018In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 18, no 1, article id 196Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The method, Swedish Physical Activity on Prescription (SPAP), has been launched in Swedish healthcare to promote physical activity for prevention and treatment of lifestyle related health disorders. Despite scientific support for the method, and education campaigns, it is used to a limited extent by health professionals. The aim of the study was to describe the views of health professionals on perceived facilitators, barriers and requirements for successful implementation of SPAP in primary healthcare.

    METHODS: Eighteen semi-structured interviews with stakeholders in SPAP, i.e. ten people working in local or central management and eight primary healthcare professionals in two regional healthcare organisations, were analysed using qualitative content analysis.

    RESULTS: We identified an overarching theme regarding requirements for successful implementation of SPAP: Need for knowledge and organisational support, comprising four main categories: Need for increased knowledge and affirmative attitude among health professionals; Need for clear and supportive management; Need for central supporting structures; Need for local supporting structures. Knowledge of the SPAP method content and core components was limited. Confidence in the method varied among health professionals. There was a discrepancy between the central organisation policy documents declaring that disease preventive methods were prioritised and a mandatory assignment, while the health professionals asked for increased interest, support and resources from management, primarily time and supporting structures. There were somewhat conflicting views between primary healthcare professionals and managers concerning perceived barriers and requirements. In contrast to some of the management's beliefs, all primary healthcare professionals undisputedly acknowledged the importance of promoting physical activity, but they lacked time, written routines and in some cases competence for SPAP counselling.

    CONCLUSION: The study provides knowledge regarding requirements to facilitate the implementation of SPAP in healthcare. There was limited knowledge among health professionals regarding core components of SPAP and how to practise the method, which speaks for in-depth training in the SPAP method. The findings highlight the importance of forming policies and guidelines and establishing organisational supporting structures, and ensuring that these are well known and approved in all parts of the healthcare organisation.

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  • 12.
    Gustavsson, Catharina
    et al.
    Dalarna University, School of Education, Health and Social Studies, Medical Science. Uppsala universitet.
    von Koch, Lena
    A 9-year follow-up of a self-management group intervention for persistent neck pain in primary health care: a randomized controlled trial2017In: Journal of Pain Research, E-ISSN 1178-7090, Vol. 10, p. 53-64Article in journal (Refereed)
    Abstract [en]

    BACKGROUND AND OBJECTIVE: In previous short-term and 2-year follow-ups, a pain and stress self-management group intervention (PASS) had better effect on pain-related disability, self-efficacy, catastrophizing, and perceived pain control than individually administered physiotherapy (IAPT) for patients with persistent tension-type neck pain. Studies that have evaluated long-term effects of self-management approaches toward persistent neck pain are sparse. The objective of this study was to compare pain-related disability, self-efficacy for activities of daily living (ADL), catastrophizing, pain, pain control, use of analgesics, and health care utilization in people with persistent tension-type neck pain 9 years after they received the PASS or IAPT.

    MATERIALS AND METHODS: Of 156 people (PASS, n = 77; IAPT, n = 79) originally included in a randomized controlled trial, 129 people (PASS, n = 63; IAPT, n = 66) were eligible and were approached for the 9-year follow-up. They were sent a self-assessment questionnaire, comprising the Neck Disability Index, the Self-Efficacy Scale, the Coping Strategies Questionnaire, and questions regarding pain, analgesics, and health care utilization. Mixed linear models for repeated measures analysis or generalized estimating equations were used to evaluate the differences between groups and within groups over time (baseline, previous follow-ups, and 9-year follow-up) and the interaction effect of "time by group".

    RESULTS: Ninety-four participants (73%) responded (PASS, n = 48; IAPT, n = 46). At 9 years, PASS participants reported less pain-related disability, pain at worst, and analgesics usage, and a trend toward better self-efficacy compared to IAPT participants. There was a difference between groups in terms of change over time for disability, self-efficacy for ADL, catastrophizing, perceived pain control, and health care visits in favor of PASS. Analyses of simple main effects at 9 years showed that the PASS group had less disability (p = 0.006) and a trend toward better self-efficacy (p = 0.059) than the IAPT group.

    CONCLUSION: The favorable effects on pain-related disability of PASS were sustained 9 years after the intervention.

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  • 13.
    Gustavsson, Catharina
    et al.
    Dalarna University, School of Health and Welfare, Medical Science. Uppsala University, Uppsala.
    von Koch, Lena
    Karolinska Institutet, Stockholm; Karolinska University Hospital, Stockholm.
    Pain self-management intervention supports successful attainment of self-selected rehabilitation goals-secondary analysis of a randomized controlled trial2022In: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625, Vol. 25, no 3, p. 1157-1167Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: (i) Describe patients' self-selected activity-related rehabilitation goals, and (ii) compare attainment of these rehabilitation goals among people with persistent tension-type neck pain receiving a group-based pain and stress self-management intervention (PASS) or individual physiotherapy (IPT).

    METHODS: Before intervention and random allocation to PASS or IPT, 156 people (PASS n = 77, IPT n = 79), listed three self-selected activity-related rehabilitation goals by use of the Patient Goal Priority Questionnaire (PGPQ). For each activity goal, participants rated limitations in activity performance, self-efficacy and fear of activity performance, readiness to change to improve performance, and expectations of future activity performance. At follow-ups (10 weeks, 20 weeks, 1 year and 2 years after inclusion), participants also responded to a question on changes made to improve activity performance. Mann-Whitney U test was used to evaluate between-group differences.

    RESULTS: There were between-group differences in favour of PASS in the attainment of self-selected rehabilitation goals with regard to activity limitations and satisfaction with activity performance at all follow-ups.

    CONCLUSIONS: PASS was more successful than IPT for the attainment of self-selected rehabilitation goals, improvements in activity limitations and satisfaction with activity performance as measured by PGPQ. The PASS programme emphasized the importance of applying active pain- and stress-coping techniques in personal 'risk situations' for pain flare-ups, which appear to support people with persistent tension-type neck pain to make changes in their lives to improve activity performance.

    PATIENT OR PUBLIC CONTRIBUTION: Patient engagement in rehabilitation by self-selected goals was investigated, but patients were not involved in the design or conduct of the study.

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  • 14. Hermansson, Ruth S
    et al.
    Olovsson, Matts
    Gustavsson, Catharina
    Dalarna University, School of Education, Health and Social Studies, Medical Science. Center for Clinical Research Dalarna, Uppsala University; Department of Public Health and Caring Sciences, Family Medicine and Preventive Medicine, Uppsala University.
    Lindström, Annika Kristina
    Elderly women's experiences of self-sampling for HPV testing.2020In: BMC Cancer, E-ISSN 1471-2407, Vol. 20, no 1, article id 473Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Self-sampling for HPV testing, as an alternative to the conventional speculum based sampling, is highly acceptable to women of screening ages. The aim of this study was to describe older women's (60 to 75 years) experiences of self-sampling.

    METHODS: In Sweden a descriptive study with quantitative and qualitative methods was designed to collect data from a survey of women who participated in self-sampling for HPV testing. Individual interviews were done with women who tested positive in the first self-sampling, and were either negative in their second HPV test or were positive in their second HPV test, but without precancerous lesions or cancer.

    RESULTS: Of 893 eligible women, 868 (97.2%) answered the survey. Among the surveyed women, 49.2% reported it was very easy to perform self-sampling, 46.8% answered it was easy and 2.0% answered it was not easy. A majority (58.9%) answered that they prefer self-sampling, 16.5% that they prefer sample collection by a healthcare provider, 23.7% did not have any preference and 0.9% did not answer the question. In the interviews, 13 of 16 invited women participated. Most of them reported that they prefer self-sampling because it was easy to perform, less embarrassing and less time consuming than a visit to a clinic. The majority of women reported that they were not worried when informed about having an HPV positive test. Overall, participating women with better knowledge about the significance of an HPV infection were more worried about having a positive HPV test.

    CONCLUSION: Cervical cancer remains a highly preventable disease through screening and early treatment. Our results indicated that vaginal self-sampling for HPV testing was a well-accepted method for cervical cancer prevention in this group of older women.

    TRIAL REGISTRATION: https://www.researchweb.org/is/en/fouckfuu/project/272587. Registered 24 June 2019-retrospectively registered. www.researchweb.org.

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  • 15. Johansson, S.
    et al.
    Hedvall, P. -O
    Gulliksen, J.
    von Koch, L.
    Gustavsson, Catharina
    Dalarna University, School of Health and Welfare, Medical Science.
    Prerequisites for digital participation - the case of digital health technology and people with impairments2024In: The Routledge International Handbook of Disability and Global Health, Taylor and Francis , 2024, p. 552-564Chapter in book (Other academic)
    Abstract [en]

    Digital healthcare services and digital health information, here called eHealth services, have the potential to reach people with diverse needs as both a complement to and a substitution for traditional healthcare. The access to and use of digital health information and digital healthcare services that are accessible and usable for people with impairments is a complex phenomenon.

    This potential is not always released and there seems to be a systematic pattern regarding who will benefit from eHealth and who will not, and there is a risk that those who could benefit from eHealth the most will be the ones using it the least. This chapter will present and discuss a set of prerequisites for achieving equity and non-disabling use of eHealth services for people with impairments. Over time and depending on context or society, some prerequisites are probably more critical than others.

  • 16. Johansson, S.
    et al.
    Hedvall, P. -O
    Larsdotter, M.
    Larsson, T. P.
    Gustavsson, Catharina
    Dalarna University, School of Health and Welfare, Medical Science.
    Co-Designing with Extreme Users: A Framework for User Participation in Design Processes2023In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, Vol. 25, no 1, p. 418-430Article in journal (Refereed)
    Abstract [en]

    The demand for user participation in design processes is increasing, and there is a need to formulate guidance on how to involve disabled users and their representative organisations. Their participation contributes an extreme user perspective to the design process. The aim of this study was to develop an empirically grounded framework for user participation in co-design processes, involving the users with wide range of characteristics. The study was theoretically grounded in ‘participatory design’ and ‘value sensitive design’ and used an exploratory study design with online workshops to iteratively collect and analyse data. All participants collaborated on an online Miro-board to identify themes and formulate guiding principles for the framework. We propose a framework consisting of three themes: participation fundamentals, participation ethics and participation practicalities, entailing 11 guiding principles. By applying this framework, the premises, methods and activities in the design process will be accessible to all participants, and user participation in design projects will become more transparent, equitable and easier to implement. It will enable all users, people with disabilities and others, to participate and contribute to a design that can be used by the widest range of people. © 2023 The Author(s).

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  • 17. Johansson, Stefan
    et al.
    Gulliksen, Jan
    Gustavsson, Catharina
    Dalarna University, School of Education, Health and Social Studies, Medical Science. Center for Clinical Research Dalarna, Uppsala University; Uppsala University.
    Disability digital divide: the use of the internet, smartphones, computers and tablets among people with disabilities in Sweden2020In: Universal Access in the Information Society, ISSN 1615-5289, E-ISSN 1615-5297, Vol. 20, no 1, p. 105-120Article in journal (Refereed)
    Abstract [en]

    Although Sweden is one of the most digitalized countries and the Swedish population’s use of the internet is among the most studied in the world, little is known about how Swedes with disabilities use internet. The purpose of this study is to describe use of and perceived difficulties in use of the internet among people with disabilities and to explore digital divides in-between and within disability groups, and in comparison with the general population. This is a cross-sectional survey targeting the same issues as other nationwide surveys but adapted for people with cognitive disabilities. Participants were recruited from May to October 2017 by adaptive snowball sampling. The survey comprised questions on access to and use of devices, and use of and perceived difficulties in use of internet. A total of 771 people responded to the survey, representing 35 diagnoses/impairments. Larger proportions of people with autism, ADHD and bipolar disorder reported using internet than other disability groups. Women with autism used the internet more than any other disability group, and women with aphasia used the internet the least. People with disabilities related to language and understanding reported more difficulties using internet than other disability groups. Larger proportions of participants than the general Swedish population reported not feeling digitally included. In many but not all disability groups, larger proportions of men than women reported not feeling digitally included. Our findings show that there are differences in digital inclusion between sub-groups of diagnoses/impairments. Thus, disability digital divides are preferably investigated by sub-grouping disabilities, rather than studied as one homogeneous group.

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  • 18. Jonsson, M.
    et al.
    Gustavsson, Catharina
    Dalarna University, School of Health and Welfare, Medical Science. Center for Clinical Research Dalarna, Uppsala University; Department of Public Health and Caring Sciences, Uppsala University.
    Gulliksen, J.
    Johansson, S.
    How have public healthcare providers in Sweden conformed to the European Union’s Web Accessibility Directive regarding accessibility statements on their websites?2023In: Universal Access in the Information Society, ISSN 1615-5289, E-ISSN 1615-5297Article in journal (Refereed)
    Abstract [en]

    The Web Accessibility Directive (WAD) is part of the European Union’s work for digital inclusion. The WAD obligates that public sector bodies’ websites meet accessibility standards and provide an accessibility statement on the website informing about inaccessible content, and a feedback mechanism for reporting accessibility issues or requesting inaccessible content in an accessible format. The objective of this study was to evaluate how healthcare providers in Sweden have applied accessibility statements on their websites as regulated by law. A descriptive study using a mixed methods approach was conducted, by quantitative descriptive data analysis of the healthcare providers’ accessibility statements compliance to requirements and qualitative data analysis of the written information provided in the accessibility statement. All but one of the 37 evaluated healthcare providers published an accessibility statement. None of the healthcare providers fully met the requirements for accessibility statements, and no one complied with the intention of the law, i.e. to provide accessible health information and eHealth services. There was no or minor progress between the first and the latest published accessibility statement. The possibility to declare no or partial compliance with the law, or claim disproportionate burden, and the lack of enforcement procedures, risk producing symbolic actions e.g., publishing accessibility statements without intention to abide by the law. We suggest that the directives for accessibility statements should be advanced regarding comprehensiveness, understandability, and usefulness. It is suggested that the assessment protocol developed for this study may be used for future evaluations of accessibility statements. © 2023, The Author(s).

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  • 19. Jonsson, M.
    et al.
    Johansson, S.
    Hussain, D.
    Gulliksen, J.
    Gustavsson, Catharina
    Dalarna University, School of Health and Welfare, Medical Science. Center for Clinical Research Dalarna, Uppsala University, Falun; Department of Public Health and Caring Sciences, Uppsala University.
    Development and Evaluation of eHealth Services Regarding Accessibility: Scoping Literature Review2023In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 25, article id e45118Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Accessibility is acknowledged as a key to inclusion in the Convention of Rights for People with Disabilities. An inaccessible design can result in exclusion from eHealth and cause disability among people who have impairments. OBJECTIVE: This scoping literature review aimed to investigate how eHealth services have been developed and evaluated regarding accessibility for people with impairments. METHODS: In line with Arksey and O'Malley's framework for scoping studies and using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR), we conducted a search in 4 databases (PubMed, Scopus, IEEE, and Web of Science) in October 2020 and an update of the search in June 2022. The search strategy was structured according to the PICO model as follows: Population/Problem, digital accessibility for users with impairment; Intervention, health care delivered by any digital solution; Comparison, not applicable; Outcome, use of and adherence to (1) Web Content Accessibility Guidelines (WCAG), (2) other accessibility guidelines, and (3) other means, for designing or evaluating accessibility in eHealth services. A Boolean search was conducted by combining terms related to accessibility and eHealth. All authors participated in screening abstracts according to the eligibility criteria. Each publication, containing a potentially relevant abstract, was read (full text) and assessed for eligibility by 2 authors independently and pairwise. Publications deemed eligible were read by all authors and discussed for consensus. RESULTS: A total of 8643 publications were identified. After abstract screening, 131 publications remained for full-text reading. Of those, 116 publications were excluded as they did not meet the eligibility criteria. Fifteen publications involving studies of 12 eHealth services were included in the study. Of the 15 publications, 2 provided a definition of accessibility, 5 provided an explanation of accessibility, and 8 did not provide any explanation. Five publications used the WCAG to evaluate accessibility when developing eHealth services. One publication used International Organization for Standardization (ISO) 29138, ISO 2941, and ISO/International Electrotechnical Commission (IEC) 30071-1 standards together with the Spanish Association for Standardization (UNE) 139803 standard. Eleven publications used other means to address accessibility, including text-level grading; literature review about accessibility; user tests, focus groups, interviews, and design workshops with target groups of patients, relatives, and health care professionals; and comparative analysis of existing technical solutions to provide information about useful requirements. CONCLUSIONS: Although a clear definition of accessibility can enhance operationalization and thus measurability when evaluating accessibility in eHealth services, accessibility was insufficiently defined in most of the included studies. Further, accessibility guidelines and standards were used to a very limited extent in the development and evaluation of eHealth services. Guidelines for developing complex interventions that include guidance for accessibility are motivated to ensure that accessibility will be considered systematically in eHealth services. ©Marika Jonsson, Stefan Johansson, Dena Hussain, Jan Gulliksen, Catharina Gustavsson. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 17.08.2023.

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  • 20.
    Klockar, Erika
    et al.
    Dalarna University, School of Health and Welfare, Care Sciences. Dalarna University, School of Health and Welfare, Medical Science.
    Kylén, Maya
    Dalarna University, School of Health and Welfare, Caring Science/Nursing. Lund University.
    Gustavsson, Catharina
    Dalarna University, School of Health and Welfare, Medical Science. Center for Clinical Research Dalarna - Uppsala University, Falun; Uppsala University.
    Finch, Tracy
    Northumbria University, Newcastle upon Tyne, UK..
    Jones, Fiona
    Kingston University and St George's, University of London, London, UK..
    Elf, Marie
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Self-management from the perspective of people with stroke – An interview study2023In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 112, article id 107740Article in journal (Refereed)
    Abstract [en]

    Objective: Self-management support can improve quality of life, mood, self-efficacy, and physical function following a stroke. Knowledge of how people with stroke understand and experience self-management in different contexts is crucial to developing effective self-management support. This study explored how people with stroke understand and practice self-management during the post-acute phase. Method: A descriptive study using qualitative content analysis to explore data from semistructured interviews Results: Eighteen participants were interviewed. Most participants interpreted self-management as ‘taking care of their business’ and ‘being independent”. However, they encountered difficulties performing daily activities, for which they felt unprepared. Although interest in implementing self-management support increases, participants did not report receiving specific advice from healthcare professionals. Conclusion: People continue to feel unprepared to manage everyday activities after hospital discharge and must largely work things out for themselves. There is an overlooked opportunity to start the process of self-management support earlier in the stroke pathway, with healthcare professionals and people with stroke combining their skills, ideas and expertise. This would enable confidence to self-management to flourish rather than decrease during the transition from hospital to home. Practical implications: Individual tailored self-management support could help people with stroke more successfully manage their daily lives post-stroke. © 2023 The Authors

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  • 21.
    Klockar, Erika
    et al.
    Dalarna University, School of Health and Welfare, Medical Science. Dalarna University, School of Health and Welfare, Care Sciences.
    Kylén, Maya
    Dalarna University, School of Health and Welfare, Caring Science/Nursing. Lund University.
    Gustavsson, Catharina
    Dalarna University, School of Health and Welfare, Medical Science. Uppsala University, Center for Clinical Research Dalarna, Falun.
    Finch, Tracy
    Jones, Fiona
    Elf, Marie
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Self-management from the perspective of people with stroke: an interview study2023In: International Journal of Stroke, ISSN 1747-4930, E-ISSN 1747-4949, Vol. 18, no 1 suppl, p. 97-97Article in journal (Refereed)
    Abstract [en]

    Introduction: Self-management support (SMS) improves quality of life, mood, self-efficacy and physical function, and reduces health service utilization in persons with stroke.Today, rehabilitation increasingly occurs at home, but persons with stroke and their families often feel unprepared to manage this situation. SMS is important to succeed in transforming care and rehabilitation to home. Understanding how people perceive and experience self-management are thus crucial in developing SMS for persons with stroke. This study aimed to explore how persons with stroke understand and practice self-management in the post-acute phase.Method: Semi-structured with 18 persons who received rehabilitation at home. The data was analyzed using qualitative content analysis.Results: The participant expressed the importance of being independent and taking action to find their new normal way of living. They discovered difficulties performing daily activities after homecoming, a situation they were not prepared for. The persons displayed different game plans for self-management to handle their situation, but lacked support from health care.Conclusion: In the present study, participants expressed self-management as taking care of their own business and being as independent as possible. Despite health care attempts to increase self-care models, more advance advise on self-management was not revealed. This may indicate that health care does not have all the tools to operationalize self-management for persons with stroke to meet their individual needs. This study can contribute to knowledge on self-management as experienced by persons with stroke and thereby develop sustainable self-care models, which is crucial to meet patients’ needs in a new health care context.

  • 22.
    Klockar, Erika
    et al.
    Dalarna University, School of Health and Welfare, Medical Science. Dalarna University, School of Health and Welfare, Care Sciences.
    Kylén, Maya
    Dalarna University, School of Health and Welfare, Caring Science/Nursing. Lund University.
    Gustavsson, Catharina
    Dalarna University, School of Health and Welfare, Medical Science. Region Dalarna.
    Finch, Tracy
    Jones, Fiona
    Elf, Marie
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Self-management from the perspective of people with stroke: an interview study2023Conference paper (Refereed)
    Abstract [en]

    Introduction: Self-management support (SMS) improves quality of life, mood, self-efficacy and physical function, and reduces health service utilization in persons with stroke.Today, rehabilitation increasingly occurs at home, but persons with stroke and their families often feel unprepared to manage this situation. SMS is important to succeed in transforming care and rehabilitation to home. Understanding how people perceive and experience self-management are thus crucial in developing SMS for persons with stroke. This study aimed to explore how persons with stroke understand and practice self-management in the post-acute phase.Method: Semi-structured with 18 persons who received rehabilitation at home. The data was analyzed using qualitative content analysis.Results: The participant expressed the importance of being independent and taking action to find their new normal way of living. They discovered difficulties performing daily activities after homecoming, a situation they were not prepared for. The persons displayed different game plans for self-management to handle their situation, but lacked support from health care.Conclusion: In the present study, participants expressed self-management as taking care of their own business and being as independent as possible. Despite health care attempts to increase self-care models, more advance advise on self-management was not revealed. This may indicate that health care does not have all the tools to operationalize self-management for persons with stroke to meet their individual needs. This study can contribute to knowledge on self-management as experienced by persons with stroke and thereby develop sustainable self-care models, which is crucial to meet patients’ needs in a new health care context.

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  • 23.
    Klockar, Erika
    et al.
    Dalarna University, School of Health and Welfare, Care Sciences. Dalarna University, School of Health and Welfare, Medical Science.
    Kylén, Maya
    Dalarna University, School of Health and Welfare, Caring Science/Nursing. Lund University, Lund.
    McCarthy, Linnea
    Dalarna University, School of Health and Welfare, Care Sciences. Dalarna University, School of Health and Welfare, Medical Science.
    Koch, Lena von
    Karolinska Institutet, Stockholm; Karolinska University Hospital, Stockholm.
    Gustavsson, Catharina
    Dalarna University, School of Health and Welfare, Medical Science. Center for Clinical Research Dalarna, Falun; Uppsala University, Uppsala.
    Jones, Fiona
    Faculty of Health and Social Care Sciences, Kingston University & St George's, University of London, London, UK, GB.
    Elf, Marie
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    The Swedish Stroke Self-Efficacy Questionnaire: translation and cross-cultural adaptation2024In: Journal of Patient-Reported Outcomes, E-ISSN 2509-8020, Vol. 8, article id 55Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To translate and cross-culturally adapt the Stroke Self-Efficacy Questionnaire (SSEQ) from English to Swedish and to evaluate psychometric properties of the questionnaire.

    METHODS: A cross-sectional study design, where the translation followed a process including initial translation, synthesis, backward translation, expert committee, and pretest. Content validity was assessed using Content validity index (CVI). Psychometric assessments included floor-ceiling effects and internal consistency.

    RESULTS: Language and cultural congruence were achieved, and content validity index scores were high (0.923-1). The psychometric evaluations provided acceptable outcomes concerning internal consistency, with Cronbach's alpha scores for the total scale (0.902), the activities subscale (0.861) and the self-management subscale (0.818) respectively. Ceiling effects were evident, but no floor effects.

    CONCLUSION: This study found the Swedish version of the SSEQ promising as a tool for assessment of self-efficacy in a Swedish stroke care setting, although further psychometric assessments are recommended in future studies.

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  • 24. Lostelius, Petra V
    et al.
    Gustavsson, Catharina
    Dalarna University, School of Health and Welfare, Medical Science. Centre for Clinical Research Dalarna, Uppsala University, Falun; Department of Public Health and Caring Sciences, Uppsala University, Uppsala.
    Adolfsson, Eva Thors
    Söderlund, Anne
    Revenäs, Åsa
    Zakrisson, Ann-Britt
    Mattebo, Magdalena
    Identification of health-related problems in youth: a mixed methods feasibility study evaluating the Youth Health Report System2024In: BMC Medical Informatics and Decision Making, E-ISSN 1472-6947, Vol. 24, no 1, article id 64Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Because poor health in youth risk affecting their entry in adulthood, improved methods for their early identification are needed. Health and welfare technology is widely accepted by youth populations, presenting a potential method for identifying their health problems. However, healthcare technology must be evidence-based. Specifically, feasibility studies contribute valuable information prior to more complex effects-based research. The current study assessed the process, resource, management, and scientific feasibility of the Youth Health Report System prototype, developed within a youth health clinic context in advance of an intervention study.

    METHODS: This mixed-methods feasibility study was conducted in a clinical setting. The process, resource, management, and scientific feasibility of the Youth Health Report System were investigated, as recommended in the literature. Participants were youth aged 16-23 years old, attending a youth health clinic, and healthcare professionals from three clinics. The youth participants used their smart phones to respond to Youth Health Report System health questions and healthcare professionals used their computer to access the results and for registration system entries. Qualitative data were collected from interviews with healthcare professionals, which were described with thematic analysis. Youth participants' quantitative Youth Health Report System data were analyzed for descriptive statistics.

    RESULTS: Feasibility analysis of qualitative data from interviews with 11 healthcare professionals resulted in three themes: We expected it could be hard; Information and routines helped but time was an issue; and The electronic case report form was valuable in the health assessment. Qualitative data were collected from the Youth Health Report System. A total of 54 youth participants completed the evaluation questionnaire, and healthcare professionals retrieved information from, and made post-appointment system entries. Quantitative results revealed few missing items and acceptable data variability. An assessment template of merged qualitative and quantitative data guided a consensus discussion among the researchers, resulting in acceptable feasibility.

    CONCLUSIONS: The process-, resource-, management-, and scientific feasibility aspects were acceptable, with some modifications, strengthening the potential for a successful Youth Health Report System intervention study.

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  • 25. Mathabire Rücker, Sekai Chenai
    et al.
    Gustavsson, Catharina
    Dalarna University, School of Health and Welfare, Medical Science. Center for Clinical Research Dalarna, Uppsala University, Falun; Department of Public Health and Caring Sciences, Uppsala University.
    Rücker, Fredrik
    Lindblom, Anders
    Hårdstedt, Maria
    Transmission of COVID-19 among healthcare workers - an epidemiological study during the first phase of the pandemic in Sweden2022In: Epidemiology and Infection, ISSN 0950-2688, E-ISSN 1469-4409, Vol. 150, article id e68Article in journal (Refereed)
    Abstract [en]

    During the first phase of the COVID-19 pandemic in 2020, concerns were raised that healthcare workers (HCWs) were at high risk of infection. The aim of this study was to explore the transmission of COVID-19 among HCWs during a staff outbreak at an inpatient ward in Sweden 1 March to 31 May 2020. A mixed-methods approach was applied using several data sources. In total, 152 of 176 HCWs participated. The incidence of COVID-19 among HCWs was 33%. Among cases, 48 (96%) performed activities involving direct contact with COVID-19 patients. Contact tracing connected 78% of cases to interaction with another contagious co-worker. Only a few HCW cases reported contact with a confirmed COVID-19 case at home (n = 6; 12%) or in the community (n = 3; 6%). Multiple logistic regression identified direct care of COVID-19 patients and positive COVID-19 family contact as risk factors for infection (adjusted OR 8.4 and 9.0 respectively). Main interventions to stop the outbreak were physical distancing between HCWs, reinforcement of personal hygiene routines and rigorous surface cleaning. The personal protective equipment used in contact with patients was not changed in response to the outbreak. We highlight HCW-to-HCW transmission of COVID-19 in a hospital environment and the importance of preventing droplet and contact transmission between co-workers.

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  • 26.
    McCarthy, Linnea
    et al.
    Dalarna University, School of Health and Welfare, Care Sciences. Dalarna University, School of Health and Welfare, Medical Science.
    Kylén, Maya
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Gustavsson, Catharina
    Dalarna University, School of Health and Welfare, Medical Science.
    Finch, Tracy
    Jones, Fiona
    Elf, Marie
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Familjemedlemmars syn på och upplevelser av att stötta egenvård efter stroke2024Conference paper (Other academic)
  • 27.
    McCarthy, Linnea
    et al.
    Dalarna University, School of Health and Welfare, Care Sciences. Dalarna University, School of Health and Welfare, Medical Science.
    Kylén, Maya
    Dalarna University, School of Health and Welfare, Caring Science/Nursing. Lund University.
    Gustavsson, Catharina
    Dalarna University, School of Health and Welfare, Medical Science. Center for Clinical Research Dalarna, Falun; Uppsala University.
    Finch, Tracy
    Jones, Fiona
    Elf, Marie
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Supporting after stroke: significant others’ understanding of and perceived role in self-management2024Conference paper (Other academic)
    Abstract [en]

    Background and aims Self-management support is important in persons adaptation to a new life after stroke. Significant others often provide a meaningful part of that support. The impact on family members caring for a person after stroke has been extensively studied, however there is a lack of research into significant others’ understanding and experiences of self-management after stroke. Therefore, this study aimed to explore how significant others understand self-management and how they perceive their role in supporting self-management in post-stroke rehabilitation at home.

    Method Qualitative, semi-structured interviews were conducted with 28 significant others of persons in rehabilitation after stroke. Data were analysed using inductive content analysis.

    Results The preliminary results showed that significant others commonly relate self- management to activities of daily living (ADL) and rehabilitation training. Participants saw their role as important not only to assist the stroke survivor practically, but also to provide emotional support and companionship.

    Conclusion There is an emerging discrepancy between descriptions in the literature and significant others’ perceptions of and actions to support self-management. If significant others obtained a clearer understanding of the concept of self- management, their support could be more efficient in strengthening self-efficacy and self-management abilities in stroke survivors.

    How will this research improve life after stroke for stroke survivors? By highlighting the characteristics of significant others’ self-management support and their understanding of the concept, interventions to enhance self-managementsupport for stroke survivors can be improved in the future.

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  • 28. Müssener, U.
    et al.
    Henriksson, P.
    Gustavsson, Catharina
    Dalarna University, School of Health and Welfare, Medical Science. Center for Clinical Research Dalarna, Uppsala University, Falun; Department of Public Health and Caring Sciences, Uppsala University.
    Henriksson, H.
    Tyrberg, M. J.
    Johansson, S.
    Ågren, K.A.
    Promoting Healthy Behaviors Among Adolescents and Young Adults With Intellectual Disability: Protocol for Developing a Digital Intervention With Co-Design Workshops2023In: JMIR Research Protocols, E-ISSN 1929-0748, Vol. 12, article id e47877Article in journal (Refereed)
    Abstract [en]

    Background: Intellectual disability (ID) is a neurodevelopmental disorder associated with a poorer health profile and higher mortality. Young people with ID have more sedentary lifestyles than their typically developing peers. Consequently, this group is at significant risk of developing lifestyle diseases (ie, noncommunicable diseases) later in life. Increasing physical activity and eating a healthier diet have been argued to be effective ways to improve the health of adolescents and young adults with ID. Digital interventions are a viable option for improving health behaviors. Objective: This research protocol describes a co-design approach using workshops to develop a digital intervention that promotes healthy behaviors, including increasing physical activity and eating a healthier diet, among adolescents and young adults with ID. Methods: A participatory design using a co-design approach will be applied as a strategy to include potential users of the digital intervention and other stakeholders in the research process, comprising research design, data collection, and data analysis. A total of 7 to 10 workshops will be conducted aimed at developing a digital intervention and will include procedures for assessing needs; facilitators and barriers to health promotion; physical, mental, and social well-being; participation; and relationships. The workshops will include 12 to 18 stakeholders with experience of clinical practice and research related to young people with ID, including relatives, as well as adolescents and young adults (aged 16-25 years) with mild to moderate ID. Participants will perform a mixture of individual and group work using whiteboards, sticky notes, felt-tip pens, cards, balls, stickers, and wireframe templates. Data analysis will take place concurrently with data collection as an iterative process. Transcribed data from the audio and video recordings of the groups’ discussions will be analyzed following a qualitative methodological procedure. Results: This study protocol provides a systematic record of the scientific methodologies used when developing the digital intervention and provides insights into the potential practical solutions and challenges when following a co-design approach in which relatives and professionals, as well as adolescents and young adults with ID, are included as research partners. Recruitment of participants started in April 2023. Data collection, analysis, and reporting will be completed in December 2023. Conclusions: This study will explore the effectiveness of workshops at gathering rich, reliable, and valid data in a co-design approach with participants. The results will provide increased knowledge in how to use technology to develop novel, evidence-based, and scalable interventions that adolescents and young adults with ID can and want to use to motivate physical activity and a healthier diet. The project will provide a simple and cognitively accessible digital solution for promoting lifestyle behaviors tailored to the needs of adolescents and young adults with ID. ©Ulrika Müssener, Pontus Henriksson, Catharina Gustavsson, Hanna Henriksson, Mårten J Tyrberg, Stefan Johansson, Kristin Alfredsson Ågren.

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  • 29. Nilsson, Henrik
    et al.
    Saboonchi, Fredrik
    Gustavsson, Catharina
    The Swedish Red Cross University College, Huddinge; Center for Clinical Research Dalarna, Uppsala University, Falun.
    Malm, Andreas
    Gottvall, Maria
    Trauma-afflicted refugees' experiences of participating in physical activity and exercise treatment: a qualitative study based on focus group discussions2019In: European Journal of Psychotraumatology, ISSN 2000-8198, E-ISSN 2000-8066, Vol. 10, no 1, article id 1699327Article in journal (Refereed)
    Abstract [en]

    Background: Refugees with prolonged and repeated experiences of trauma, often in combination with post-migration living difficulties, are subjected to severe levels of stress and stress-related ill health, including post-traumatic stress disorder (PTSD). Physical activity (PA) is well-established as an effective stress reliever. However, the effect of PA and exercise has received scarce attention in the context of PTSD, and particularly in the field of refugees' health. Objective: The objective of this study was to explore the experience of participation in PA and exercise as part of the treatment for trauma-afflicted refugees. Method: An explorative qualitative research design was used. Six focus group discussions were conducted with 33 female and male participants that had experience of group-based PA and exercise treatment. The gathered data was analysed by qualitative content analysis. Results: The analysis resulted in one over-arching theme reflecting the participants overall experience of PA and exercise as a process of building resilience. Participants experienced improvements in both physical and mental health domains. Increased self-awareness and self-confidence were seen as additional important benefits, and the interruption of daily stressors provided a sense of relief and recovery. The treatment group settings were experienced as becoming a vehicle for overcoming social fear and isolation, which also carried an empowering and strength-building impact over to participants' family life and social relationships. Treatment characteristics were experienced as highly supportive and often referred to as the basis of other positive experiences and perceived health benefits. Conclusions: The result of this study outlines a detailed account of trauma-afflicted refugees' experiences and preferences of PA and exercise-based treatment from a broad range of perspectives. These findings provide a starting point for future research in this field and indicate a particular need for both research and intervention development to include the real-life impact of participating in such treatments.

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  • 30.
    Pettersson, Linda
    et al.
    Center for Clinical Research Dalarna, Uppsala University, Falun; Uppsala University, Uppsala; Mora Hospital, Mora .
    Johansson, Stefan
    KTH Royal Institute of Technology, Stockholm.
    Demmelmaier, Ingrid
    Uppsala University, Uppsala.
    Gustavsson, Catharina
    Dalarna University, School of Health and Welfare, Medical Science. Uppsala University, Uppsala; Center for Clinical Research Dalarna, Uppsala University, Falun; .
    Disability digital divide: survey of accessibility of eHealth services as perceived by people with and without impairment2023In: BMC Public Health, E-ISSN 1471-2458, Vol. 23, no 1, article id 181Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Sustainable and effective eHealth requires accessibility for everyone. Little is known about how accessibility of eHealth is perceived among people with various impairments. The aim of this study was to compare use and perceived difficulty in the use of eHealth among people with and without impairment, and how different types of impairment were associated with perceived difficulty in the use of eHealth.

    METHODS: This study used data collected in a nationwide survey in Sweden. Snowball sampling was used to recruit participants with self-reported impairment, from June to October 2019. In February 2020, the survey was posted to people in the general population who were matched to the participants with impairment by age, gender and county of residence. Multiple logistic regression was used to analyse the use of four eHealth services, and perceived difficulty in the use of six eHealth services.

    RESULTS: In total, 1631 participants with, and 1084 participants without impairment responded to the survey. Participants with impairment reported less use and more difficulty in the use of all eHealth services as compared to participants without impairment. When comparing types of impairment, booking healthcare appointments online was least used and most avoided by participants with communication, language and calculation impairments (adjusted odds ratio (aOR) use 0.64, 95% confidence interval (95%CI) 0.49-0.83; aOR avoid 1.64, 95%CI 1.19-2.27), and intellectual impairments (aOR use 0.28, 95%CI 0.20-0.39; aOR avoid 2.88, 95%CI 1.86-4.45). The Swedish national web-portal for health information and services, 1177.se, was reported difficult to use the most among participants with communication, language and calculation impairments (aOR 2.24, 95%CI 1.50-3.36), deaf-blindness (aOR 11.24, 95%CI 3.49-36.23) and hearing impairment (aOR 2.50, 95%CI 1.17-5.35).

    CONCLUSIONS: The results confirm the existence of an eHealth disability digital divide. People with impairment were not one homogeneous group, but differed in perceived difficulties in regard to eHealth. Based on a purposeful subgrouping of impairments, we showed that people with communication, language and calculation impairments, and intellectual impairments, reported least use and most difficulty in using eHealth. The findings can guide further research in creating eHealth that is accessible for all, including those with the most significant difficulties.

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  • 31. Rucker, Fredrik
    et al.
    Hardstedt, Maria
    Rucker, Sekai Chenai Mathabire
    Aspelin, Emma
    Smirnoff, Alexander
    Lindblom, Anders
    Gustavsson, Catharina
    Dalarna University, School of Health and Welfare, Medical Science.
    From chaos to control - experiences of healthcare workers during the early phase of the COVID-19 pandemic: a focus group study2021In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 21, no 1, article id 1219Article in journal (Refereed)
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  • 32.
    Tistad, Malin
    et al.
    Dalarna University, School of Health and Welfare, Medical Science. Karolinska Institutet, Huddinge.
    Bergström, Anna
    Uppsala University, Akademiska sjukhuset, Uppsala.
    Elf, Marie
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Eriksson, Leif
    Uppsala University, Akademiska sjukhuset, Uppsala.
    Gustavsson, Catharina
    Dalarna University, School of Health and Welfare, Medical Science. Center for Clinical Research Dalarna-Uppsala University, Falun; Uppsala University, Uppsala.
    Göras, Camilla
    Dalarna University, School of Health and Welfare.
    Harvey, Gill
    College of Nursing and Health Sciences, Flinders University, Adelaide, Australia.
    Källberg, Ann-Sofie
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Rudman, Ann
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Unbeck, Maria
    Dalarna University, School of Health and Welfare, Caring Science/Nursing. Karolinska Institutet, Huddinge.
    Wallin, Lars
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Training and support for the role of facilitator in implementation of innovations in health and community care: a scoping review protocol.2023In: Systematic Reviews, E-ISSN 2046-4053, Vol. 12, no 1, article id 15Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Implementing and sustaining innovations in clinical practice, such as evidence-based practices, programmes, and policies, is frequently described as challenging. Facilitation as a strategy for supporting implementation requires a facilitator, i.e. an individual with a designated role to support the implementation process. A growing number of studies report that facilitation can help tackle the challenges in implementation efforts. To optimise the potential contribution of facilitation as a strategy to improve the implementation of new practices, there is a need to enhance understanding about what training and support is required for individuals in the facilitator role. The objective of this scoping review is to map how facilitators have been trained for, and supported in, the facilitator role in implementation studies in health and community care. Specifically, the review aims to examine what is reported on training and support of facilitators in terms of learning outcomes, content, dose, mode of delivery, learning activities, and qualifications of the trainers and how the facilitators perceive training and support.

    METHODS: This scoping review will follow the guidance of the Joanna Briggs Institute and the PRISMA Extension for Scoping Review checklist. We will include articles in which (a) facilitation is deployed as an implementation strategy, with identified facilitator roles targeting staff and managers, to support the implementation of specified innovations in health or community care, and (b) training and/or support of facilitators is reported. We will exclude articles where facilitation is directed to education or training in specific clinical procedures or if facilitation supports the implementation of general quality improvement systems. All types of peer-reviewed studies and study protocols published in English will be included. A systematic search will be performed in MEDLINE (Ovid), Embase (embase.com), Web of Science Core Collection, and CINAHL (Ebsco).

    DISCUSSION: The proposed scoping review will provide a systematic mapping of the literature on the training and support of implementation facilitators and contribute useful knowledge within the field of implementation science to inform future facilitation initiatives.

    SYSTEMATIC REVIEW REGISTRATION: Registered at Open Science Framework (registration https://doi.org/10.17605/OSF.IO/M6NPQ ).

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  • 33.
    Wallin Ahlstrom, Sara
    et al.
    Mälardalen University, Vasterås; Region of Dalarna,Center for Clinical Research Dalarna – Uppsala University, Falun; Region of Dalarna, Habilitation Center in Falun, Falun.
    Janeslatt, Gunnel
    Region of Dalarna,Center for Clinical Research Dalarna – Uppsala University, Falun; Region of Dalarna, Habilitation Center in Falun, Falun; Uppsala University, Uppsala.
    Gustavsson, Catharina
    Dalarna University, School of Health and Welfare, Medical Science. Region of Dalarna,Center for Clinical Research Dalarna – Uppsala University; Uppsala University, Uppsala.
    Harder, Maria
    Mälardalen University, Västerås.
    Almqvist, Lena
    Mälardalen University, Västerås.
    Intervention in Time Processing Ability and Everyday Functioning for Preschool Children in Need of Special Support: A Randomized Controlled Study2024In: Journal of Occupational Therapy, Schools, & Early Intervention, ISSN 1941-1243, E-ISSN 1941-1251Article in journal (Refereed)
    Abstract [en]

    Children in need of special support in preschool (INS) often exhibit delayed time processing ability (TPA) which can significantly impact their everyday functioning (EDF).This study evaluates whether the MyTime intervention could improve TPA and EDF in preschool children aged five to six-year INS. A registered randomized controlled trial (ISRCTN85136134) using a waiting-list control group investigated the effectiveness of MyTime, an occupational therapy intervention program given to preschool children INS in their classrooms for 8 weeks. Data collection included KaTid-Child (R) for the assessment of TPA, the Time-Parent scale, the Adaptive Behavior Assessment System, and the Autonomy scale for assessing EDF. To evaluate between-group differences, data were analyzed using linear regression.The results show that both groups improved from baseline to post-intervention in TPA and everyday functioning but at the post-intervention, there were no between-group differences. To summarize, the MyTime intervention, indicated an increase in TPA and EDF but no between-group differences were found. Early cognitive levels of TPA in preschool children INS advocate for a longer intervention period. It is possible that long-term follow-up or additional measuring of the teacher's attitudes and the children's engagement in the preschool context could have yielded other results.

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