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  • 1.
    Aili, Katarina
    et al.
    Institute of Environmental Medicine, Karolinska Institutet, Stockholm, Sweden & FoU Spenshult, Halmstad, Sweden.
    Andersson, Maria
    FoU Spenshult, Halmstad, Sweden & Department of Clinical Sciences, Lund University, Lund, Sweden.
    Bremander, Ann
    Halmstad University, School of Business, Engineering and Science, The Rydberg Laboratory for Applied Sciences (RLAS). FoU Spenshult, Halmstad, Sweden.
    Haglund, Emma
    Halmstad University, School of Business, Engineering and Science, The Rydberg Laboratory for Applied Sciences (RLAS). FoU Spenshult, Halmstad, Sweden.
    Larsson, Ingrid
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI). FoU Spenshult, Halmstad, Sweden.
    Bergman, Stefan
    FoU Spenshult, Halmstad, Sweden & Department of Public Health and Community Medicine, University of Gothenburg, Gothenburg, Sweden.
    Sleep problems and fatigue as a predictor for the onset of chronic widespread painover a 5- and 18-year perspective: a 20-year prospective study2018In: Annals of the Rheumatic Diseases, ISSN 0003-4967, E-ISSN 1468-2060, Vol. 77, p. 87-87, article id OP0072Article in journal (Refereed)
    Abstract [en]

    Background: If localised pain represent one end of a pain spectra, with overall better general health, chronic widespread pain (CWP) and fibromyalgia represent the other end of the spectra with worse general health and more comorbidities with other somatic diseases and mental illness. Sleep problems and fatigue are common among individuals reporting CWP and previous research indicate that sleep problems may be an important predictor for pain prognosis.

    Objectives: The aim of this population-based study was to investigate if sleep problems and fatigue predict the onset of CWP 5 and 18 years later.

    Methods: In order to get more stable baseline classifications of CWP, a wash-out period was used, including only individuals who had not reported CWP (according to ACR 1990 criteria for fibromyalgia) at baseline (−98) and three years prior baseline (−95). In all, data from 1249 individuals entered the analyses for the 5 year follow-up (−03) and 791 entered for the 18 year follow-up (−16). Four parameters related to sleep (difficulties initiating sleep, maintaining sleep, early morning awakening and non-restorative sleep), and one parameter related to fatigue (SF-36 vitality scale) were investigated as predictors for CWP. Binary logistic regression analysis were used for analyses.

    Results: All investigated parameters predicted the onset of CWP five years later (problems with initiating sleep (OR 1.91; 1.16–3.14), maintaining sleep (OR 1.85; 1.14–3.01), early awakening (OR 2.0; 1.37–3.75), non-restorative sleep (OR 2.27; 1.37–3.75) and fatigue (OR 3.70; 1.76–7.84)) in a model adjusted for age, gender, socio-economy and mental health. All parameters except problems with early awakening predicted the onset of CWP also 18 years later. In all, 785 individuals did not report any of the sleeping problems at baseline (fatigue not included), 268 reported one of the problems, 167 two, 128 three and 117 subjects reported to have all four sleep problems. Reporting all four sleep problems was significantly associated with CWP at follow-up at both time points when adjusting for age, gender, socio economy and mental health (OR 4.00; 2.03–7.91 and OR 3.95; 1.90–8.20); adjusting for age, gender, socio economy and number of pain regions (OR 2.94; 1.48–5.82 and OR 2.65; 1.24–5.64) and in a model adjusting for age, gender, socio economy and pain severity (OR 2.97;1.53–5.76; and OR 3.02;1.47–6.21) for the 5 year and 18 year follow-up respectively, compared to not reporting any of the sleep problems at baseline.

    Conclusions: Both sleeping problems and fatigue predicts the onset of CWP 5- and 18 years later. The results highlight the importance of the assessment of sleep quality in the clinic.

  • 2.
    Aili, Katarina
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Sport. Spenshult Research and Development Center, FoU Spenshult, Halmstad, Sweden & Karolinska Institutet, Stockholm, Sweden.
    Andersson, Maria
    Spenshult Research and Development Center, FoU Spenshult, Halmstad, Sweden & Lunds Universitet, Lund, Sweden.
    Bremander, Ann
    Spenshult Research and Development Center, FoU Spenshult, Halmstad, Sweden & Lunds Universitet, Lund, Sweden & University of Southern Denmark, Odense, Denmark & Syddansk Universitet, Graasten, Danmark.
    Haglund, Emma
    Halmstad University, School of Business, Engineering and Science, The Rydberg Laboratory for Applied Sciences (RLAS). Spenshult Research and Development Center, FoU Spenshult, Halmstad, Sweden.
    Larsson, Ingrid
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Nursing. Spenshult Research and Development Center, FoU Spenshult, Halmstad, Sweden.
    Bergman, Stefan
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Sleep problems and fatigue as predictorsfor the onset of chronic widespread painover a 5- and 18-year perspective2018In: BMC Musculoskeletal Disorders, ISSN 1471-2474, E-ISSN 1471-2474, Vol. 19, no 1, p. 1-14Article in journal (Refereed)
    Abstract [en]

    Background: Previous research suggests that sleep problems may be an important predictor for chronic widespread pain (CWP). With this study we investigated both sleep problems and fatigue as predictors for the onset of CWP over a 5-year and an 18-year perspective in a population free from CWP at baseline.

    Methods: To get a more stable classification of CWP, we used a wash-out period, including only individuals who had not reported CWP at baseline (1998) and three years prior baseline (1995). In all, data from 1249 individuals entered the analyses for the 5-year follow-up and 791 entered for the 18-year follow-up. Difficulties initiating sleep, maintaining sleep, early morning awakening, non-restorative sleep and fatigue were investigated as predictors separately and simultaneously in binary logistic regression analyses.

    Results: The results showed that problems with initiating sleep, maintaining sleep, early awakening and non-restorative sleep predicted the onset of CWP over a 5-year (OR 1.85 to OR 2.27) and 18-year (OR 1.54 to OR 2.25) perspective irrespective of mental health (assessed by SF-36) at baseline. Also fatigue predicted the onset of CWP over the two-time perspectives (OR 3.70 and OR 2.36 respectively) when adjusting for mental health. Overall the effect of the sleep problems and fatigue on new onset CWP (over a 5-year perspective) was somewhat attenuated when adjusting for pain at baseline but remained significant for problems with early awakening, non-restorative sleep and fatigue. Problems with maintaining sleep predicted CWP 18 years later irrespective of mental health and number of pain regions (OR 1.72). Reporting simultaneous problems with all four aspects of sleep was associated with the onset of CWP over a five-year and 18-yearperspective, irrespective of age, gender, socio economy, mental health and pain at baseline. Sleep problems and fatigue predicted the onset of CWP five years later irrespective of each other.

    Conclusion: Sleep problems and fatigue were both important predictors for the onset of CWP over a five-year perspective. Sleep problems was a stronger predictor in a longer time-perspective. The results highlight the importance of the assessment of sleep quality and fatigue in the clinic. © The Author(s). 2018

  • 3.
    Aili, Katarina
    et al.
    Institute of Environmental Medicine, Karolinska Institutet, Stockholm, Sweden.
    Bergman, Stefan
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI). FoU Spenshult, Halmstad, Sweden & The Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Bremander, Ann
    Halmstad University, School of Business, Engineering and Science, The Rydberg Laboratory for Applied Sciences (RLAS). FoU Spenshult, Halmstad, Sweden & Lund University, Lund, Sweden.
    Haglund, Emma
    Halmstad University, School of Business, Engineering and Science, The Rydberg Laboratory for Applied Sciences (RLAS). FoU Spenshult, Halmstad, Sweden.
    Larsson, Ingrid
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI). FoU Spenshult, Halmstad, Sweden.
    Women’s experiences of coping with chronic widespread pain: – a qualitative study2018In: Annals of the Rheumatic Diseases, ISSN 0003-4967, E-ISSN 1468-2060, Vol. 77, p. 1815-1815, article id FRI10737-HPRArticle in journal (Refereed)
    Abstract [en]

    Background: Approximately ten percent of the population report chronic widespread pain (CWP), the condition is more common among women than men. For most people, the pain interferes with many aspects of every-day life and implies large consequences. However, the group reporting CWP is heterogeneous and there is a need for better understanding of the different strategies used for coping with pain in every-day life.

    Objectives: The purpose of this study was to describe women’s experiences of how to cope with CWP.

    Methods: The study had a descriptive design with a qualitative content analysis approach. Individual interviews were conducted with 19 women, 31–66 of age, who had reported CWP in a survey 2016. CWP was defined according to the 1990 ACR criteria for fibromyalgia. To be considered chronic, the pain should have persisted for more than three months during the last 12 months. A manifest qualitative content analysis was used to analyze the main question “How do you cope with your chronic widespread pain?” The analysis resulted in four categories.

    Results: Women described their coping with CWP in four different ways; to take control, to continue as usual, to follow instructions and to rest. To take control meant to make deliberate decisions to handle everyday day life. It also meant to take care of oneself, to think positive and to exercise at an adequate level. To continue as usual meant not to listen to body signals and either to ignore or accept the pain. To follow instructions meant listening to the health professionals and following advices, but without taking any part of the responsibility for the treatment outcome. To rest meant to perceive an unreasonable need for recovery, to resign and let the pain set the terms for the daily living.

    Conclusions: Women expressed different ways of coping with CWP including both active and passive strategies. The coping strategies included two dimensions, where one ranged from actively taking control over the pain, to passively following instructions and the other from actively continue as usual by either accepting or ignoring the pain to passively rest and being mastered by pain.

  • 4.
    Andersson, Maria
    et al.
    Department of Clinical Sciences, Section of Rheumatology, Lund University, Lund, Sweden & Spenshult Research and Development Center, Oskarström, Sweden.
    Larsson, Ingrid
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI). Spenshult Research and Development Center, Oskarström, Sweden.
    Reasons to stop drinking alcohol among patients with rheumatoid arthritis – a mixed method study2016In: Annals of the Rheumatic Diseases, ISSN 0003-4967, E-ISSN 1468-2060, Vol. 75, no Suppl 2, article id 1295Article in journal (Refereed)
    Abstract [en]

    Background: Studies of alcohol use in patients with rheumatoid arthritis are sparse and studies of why patients choose to stop drinking alcohol in particular.

    Objectives: The aim of the current study was twofold: first to identify patients with RA who stopped drinking alcohol and compare those to patients drinking alcohol, and second, to explore reasons to stop drinking alcohol.

    Methods: In 2010 a self-completion postal questionnaire was sent to all 2,102 prevalent patients in the Better anti-rheumatic farmacotherapy (BARFOT) study enquiring about disease severity, physical function (HAQ) and health related quality of life (EQ5D), pain, fatigue, patient global assessment (PatGA) and lifestyle factors e.g. alcohol. The questions assessing alcohol included the question “Have you stopped drinking alcohol?” and an open question “Why have you stopped drinking alcohol?” A mixed method design was used and 1512 patients had answered the alcohol questions and was included in the study of those 86 had stopped drinking alcohol. Seventy-one patients answered the open question and their answers were analyzed with qualitative content analysis (1).

    Results: Comparing patient with RA using alcohol or not, the patients who stopped drinking alcohol was older median age (min-max) 69 (36–90) vs. 66 (23–95), p=0.011, more men 42% vs. 29%, p=0.015, had worse physical function, median HAQ (min-max) 0.50 (0–3.00) vs. 1.00 (0–2.75), p<0.001, worse health related quality of life, median EQ5D (min-max), 0.69 (-0.59–1.00) vs. 0.76 (-0.02–1.00), p<0.001, worse self-perceived health, median PatGA (min-max) 5 (0–10) vs. 3 (0–10), <0.001, more pain, median (min-max) 5 (0–10) vs. 3 (0–10), p<0.001, and more fatigue median (min-max) 6 (0–10) vs 4 (0–10), p<0.001. There were no differences between the groups regarding disease duration, swollen and tender joints. The qualitative content analysis resulted in five categories describing the reasons for patient with RA to stop drinking alcohol: disease and treatment, health and wellbeing, work and family, faith and belief and dependences and abuse.

    Conclusions: Patients with RA who stopped drinking alcohol have a lower physical function, health related quality of life, self-perceived health and more pain and fatigue comparing to patients with RA drinking alcohol. The reasons to stop drinking alcohol were of different nature such as medical, physical, mental, social and spiritual

  • 5.
    Bremander, Ann
    et al.
    Halmstad University, School of Business, Engineering and Science, Biological and Environmental Systems (BLESS). Research and Development Center, Spenshult Hospital, Oskarström, Sweden.
    Wikström, Ingegerd
    Musculoskeletal Sciences, Department of Orthopedics, Clinical Sciences Lund, Lund University, Lund, Sweden.
    Larsson, Ingrid
    Research and Development Center, Spenshult Hospital, Oskarström, Sweden.
    Bengtsson, Maria
    Department of Rheumatology, Clinical Sciences Lund and Malmö, Lund University, Lund, Sweden.
    Hagel, Sofia
    Department of Rheumatology, Clinical Sciences Lund and Malmö, Lund University, Lund, Sweden.
    Strömbeck, Britta
    Musculoskeletal Sciences, Department of Orthopedics, Clinical Sciences Lund, Lund University, Lund, Sweden.
    Cultural adaptation, validity, reliability and responsiveness of the Swedish version of the effective musculoskeletal consumer scale (EC-17)2012In: Musculoskeletal Care, ISSN 1478-2189, E-ISSN 1557-0681, Vol. 10, no 1, p. 43-50Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Endorsed by the Outcome MEasures in Rheumatoid Arthritis in Clinical Trials (OMERACT) group, The Effective Consumer Scale (EC-17) was developed in English for patients with musculoskeletal diseases to assess the skills and perceptions important for participating in and managing health care. The objective of this study was culturally to adapt the questionnaire into Swedish and to study its psychometric properties.

    METHODS: After translation of the questionnaire into Swedish, two different groups of outpatients from two specialist rheumatology departments participated in the study. Face validity was assessed, together with internal consistency, test-retest and responsiveness of the questionnaire. Construct validity was assessed using the Arthritis Self-Efficacy Scale (ASES), and responsiveness to a five day educational intervention was analysed using the standardized response mean (SRM).

    RESULTS: Analyses were based on 124 patients with inflammatory rheumatic diseases, of whom 50 attended the intervention. Data quality met the requirements, with missing values <5%, and floor and ceiling effects <15%. Item total correlations were all >0.4, ranging from 0.49 to 0.88. Cronbach's alpha was 0.93 and 0.95 for the two groups. The test-retest correlation (ICC₂.₁) was 0.94, and there was a significant improvement as a result of the intervention, with an SRM of 0.43. However, the questionnaire had a higher construct validity with the ASES subscale 'other symptoms' than hypothesized a priori (r(s) 0.75).

    CONCLUSION: The Swedish version of the EC-17 met the required recommendations for face validity, internal consistency, test-retest reliability and responsiveness. Its construct validity needs to be further established, and the questionnaire needs further testing in different groups of patients and in different interventions. © 2012 John Wiley & Sons, Ltd.

  • 6.
    Haglund, Emma
    et al.
    Halmstad University, School of Business, Engineering and Science, The Rydberg Laboratory for Applied Sciences (RLAS). Spenshult Research and Development Center, Halmstad, Sweden.
    Bremander, Ann
    Halmstad University, School of Business, Engineering and Science, The Rydberg Laboratory for Applied Sciences (RLAS). Spenshult Research and Development Center, Halmstad, Sweden & Lund University, Lund, Sweden.
    Bergman, Stefan
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI). Spenshult Research and Development Center, Halmstad, Sweden; Lund University, Lund, Sweden & ahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Larsson, Ingrid
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Nursing. Spenshult Research and Development Center, Halmstad, Sweden.
    Educational needs in patients with spondyloarthritis in Sweden - a mixed-methods study2017In: BMC Musculoskeletal Disorders, ISSN 1471-2474, E-ISSN 1471-2474, Vol. 18, no 1, article id 335Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: There is a demand for a flexible and individually tailored patient education to meet patients' specific needs and priorities, but this area has seldom been studied in patients with spondyloarthritis (SpA), a family of inflammatory rheumatic diseases. The aim of the present study was to identify needs and priorities in patient education in patients with SpA. A second aim was to investigate patients' experiences and preferences of receiving patient education.

    METHODS: Data collection included a questionnaire survey with the Educational Needs Assessment Tool (ENAT) and interviews, using a mixed-methods design. Patients were identified through a specialist clinic register. Descriptive data are presented as mean with standard deviation, or frequencies. Chi-square test and independent-samples t-test were used for group comparisons. A manifest qualitative conventional content analysis was conducted to explore patients' experiences and needs in patient education, based on two focus groups (n = 6) and five individual interviews.

    RESULTS: Almost half (43%) of the 183 SpA patients had educational needs, particularly regarding aspects of self-help, feelings, and the disease process. More educational needs were reported by women and in patients with higher disease activity, while duration of disease did not affect the needs. The qualitative analysis highlighted the importance of obtaining a guiding, reliable, and easily available patient education for management of SpA. Individual contacts with healthcare professionals were of importance, but newer media were also requested.

    CONCLUSION: There are considerable educational needs in patients with SpA, and education concerning self-help, feelings, and the diseases process were raised as important issues. Healthcare professionals need to consider the importance of presenting varied formats of education based on the experiences and preferences of patients with SpA. © 2017 The Author(s).

  • 7.
    Haglund, Emma
    et al.
    Halmstad University, School of Business, Engineering and Science, Biological and Environmental Systems (BLESS). Lund University, Lund, Sweden & Spenshult Research and Development Center, Halmstad, Sweden.
    Bremander, Ann
    Halmstad University, School of Business, Engineering and Science, Biological and Environmental Systems (BLESS), Biomechanics and Biomedicine. Lund University, Lund, Sweden & Spenshult Research and Development Center, Halmstad, Sweden.
    Bergman, Stefan
    Lund University, Lund, Sweden; Spenshult Research and Development Center, Halmstad, Sweden & The Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Larsson, Ingrid
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health promotion and disease prevention. Spenshult Research and Development Center, Halmstad, Sweden.
    Patient Education in Spondyloarthritis Should be Guiding, Reliable and Available and Presented in Varied Formats2015In: Arthritis & Rheumatology, ISSN 2326-5191, E-ISSN 2326-5205, Vol. 67, no Suppl. S10, article id 1196Article in journal (Refereed)
    Abstract [en]

    Background/Purpose:

    The treatment target for axial spondyloarthritis (SpA) is to maximize health-related quality of life (HRQoL) by controlling disease activity and improving functioning. The treatment cornerstones are a combination of patient education, pharmacological and non-pharmacological treatment. Health professionals are familiar with providing patient education but the knowledge is scarce concerning how this education is experienced by the patients.

    The aim was to describe patients’ experiences of education in SpA management.

    Methods:

    The study had a descriptive design with a qualitative conventional content analysis approach performed in seven steps in accordance with Graneheim & Lundman (1). The analysis aimed to describe and preserve contextual meanings. After coding and subgrouping meaningful parts of the text were merged into categories. Eleven interviews were conducted between 2014-2015 in patients with SpA based on a strategic sampling in order to achieve variation with regard to sex (7 men, 4 women), age (38-66 years), subdiagnoses (5 patients with AS, 6 with USpA), quality of life (EQ5D 0.29-1.0), disease activity (BASDAI 1-6), physical function (BASFI 0-5), and global health (BASG 0-7) .

    Results:

    Three categories representing patients’ experiences of patient education in disease management emerged; guiding education, reliable education and available education. Guiding education comprised SpA management including disease knowledge such as symptoms, prognosis, treatment, self-management, climate impact, heredity, and assisting devices. Reliable education meant how and by whom the education was communicated and was considered reliable if it was based on science and communicated by specialists, for example by physician, nurse, PT, dietician and senior patients with experience of rheumatic diseases. The patients experienced difficulties in assessing the large flow of education coming from various sources. Individualized education also increased the reliability. Available education meant that the education can and should be presented in varied formats, and that the amount of information could be chosen. The education could be given orally (through meetings, videos, lectures), in writing (by pamphlets, e-mails, journals, webpages) or obtained through own personal experiences. There were requests to utilize newer media like skype, video and chat forums. Furthermore, individual contacts with healthcare professionals when needed were of importance.

    Conclusion:

    This study highlights the importance of obtaining a guiding, reliable and available patient education for management of SpA. Health care professionals need to consider the importance of presenting varied formats of education based on patients’ experiences and expectations.

    References:

    1.Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse education today 2004;24(2):105-12.

  • 8.
    Holmqvist, Gärd
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Jormfeldt, Henrika
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Larsson, Ingrid
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Lundqvist Persson, Cristina
    Skaraborg Institute for Research and Development, Skövde, Sweden.
    Women’s experiences of change through art therapy2017In: Arts and Health, ISSN 1753-3015, E-ISSN 1753-3023, Vol. 9, no 3, p. 199-212Article in journal (Refereed)
    Abstract [en]

    Background: Art therapy is based on the conception that image making in a therapeutic context may facilitate processes of change.

    Methods: A semi-structured interview with focus on the image was conducted with 17 women in order to explore change, after which a qualitative content analysis was performed.

    Results: The women experienced internal change as a sudden, unexpected turning point or as a more gradual process, although some reported no internal change whatsoever. Five themes reflecting the women’s experiences of what was important for internal change emerged: Trust in the therapist, Belief in the method, Creative impulse, Meaning of the image and The art therapy process.

    Conclusions: Art therapy may contribute to change in the sense of moving from an inadequate to a healthier state. Even when art therapy does not lead to internal change it may be supportive and provide short-term help in everyday life.

    © 2016 Informa UK Limited, trading as Taylor & Francis Group

  • 9. Holmqvist, Gärd
    et al.
    Roxberg, Åsa
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI). VID, Specialized University, Bergen, Norway.
    Larsson, Ingrid
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Lundqvist-Persson, Cristina
    Skaraborg Institute for Research and Development in Skövde, Skövde, Sweden.
    Expressions of vitality affects and basic affects during art therapy and their meaning for inner change2019In: International Journal of Art Therapy, ISSN 1745-4832, Vol. 24, no 1, p. 30-39Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to describe the occurrence of vitality affects and basic affects and to shed light on their importance in terms of patients’ inner change through art therapy. In an earlier study, where 17 women were interviewed about inner change through art therapy, a secondary deductive content analysis of images and statements was performed exploring the presence of vitality affects and basic affects. Nine of the 17 interviews contained clear descriptions of vitality affects and basic affects in the intersubjective communication between the patient and the therapist; these affects were also mirrored in the patients’ painted images. Three cases are used to illustrate the result and how affects are related to inner change. These three cases differ from each other in that they describe vitality affects either; arising from the art therapist’s empathetic verbal or non-verbal response, from a particular experience in nature, or from the interpreted symbolic language of the image. The common denominator identified as uniting the three cases was the intersubjective communication with the therapist. This study indicates that image making in art therapy gives rise to vitality affects and basic affects that contribute to inner change. It also indicates the importance of having trust in both the method and the art therapist. © 2018 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group

  • 10.
    Holmqvist, Gärd
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI). Vuxenpsykiatriska mottagningen i Skövde, Skaraborg's Hospital, Skövde, Sweden & Skaraborg Institute for Research and Development, Skövde, Sweden.
    Roxberg, Åsa
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI). VID Specialized University, Bergen, Norway.
    Larsson, Ingrid
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Lundqvist-Persson, Cristina
    Skaraborg Institute for Research and Development, Skövde, Sweden & Lund University, Lund, Sweden.
    What art therapists consider to be patients´ inner change and how it may appear during art therapy2017In: The arts in psychotherapy, ISSN 0197-4556, E-ISSN 1873-5878, Vol. 56, p. 45-52Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to explore what art therapists consider to be patients’ inner change and how it may appear during art therapy. Thirty-eight trained art therapists with experience of using art therapy as a treatment were included in the study. They were asked to describe how they perceived their patients’ inner change and a situation during art therapy when they observed such a change. An inductive thematic analysis resulted in five themes; Therapeutic alliance, describing trust of the therapist and belief in the method, Creating, which concerns the work in the therapeutic process, while Affect consciousness, Self-awareness, and Ego-strength are part of the therapy outcome. The situations in which an inner change can be observed have been presented by means of quotations and discussed in relation to different theories and art therapy research. The participating art therapists formed a heterogeneous group, resulting in an unexpected consistency about what they considered to be an inner change in the patient. The study may be seen as a contribution to further discussion about the benefits of a more common language to describe patients’ inner change in art therapy. © 2017 The Authors. Published by Elsevier Ltd.

  • 11.
    Landgren, Ellen
    et al.
    Spenshult Research and Development Center, Halmstad, Sweden.
    Bremander, Ann
    Halmstad University, School of Business, Engineering and Science, The Rydberg Laboratory for Applied Sciences (RLAS). Spenshult Research and Development Center, Halmstad, Sweden & Lund University, Lund, Sweden.
    Lindqvist, Elisabet
    Lund University, Lund, Sweden & Skåne University Hospital, Lund, Sweden.
    van der Elst, Kristien
    University Hospitals Leuven, Leuven, Belgium & KU Leuven, University of Leuven, Leuven, Belgium.
    Larsson, Ingrid
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI). Spenshult Research and Development Center, Halmstad, Sweden.
    Patients’ experiences of health in early rheumatoid arthritis – a qualitative study2018In: Annals of the Rheumatic Diseases, ISSN 0003-4967, E-ISSN 1468-2060, Vol. 77, p. 1802-1803, article id FRI10707-HPRArticle in journal (Refereed)
    Abstract [en]

    Background: The World Health Organization defines health as ”a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity”. Health changes dramatically when a person becomes ill in a chronic disease as rheumatoid arthritis (RA). RA is a disease with great impact on all aspects of life. Living with RA affects patients’ health including physical, emotional, psychological and social aspects. The purpose of a person-centered care is to see patients as experts; sharing decisions with them and helping them manage their health. Therefore it is important to understand how patients in early disease stage of RA experience the concept of health.

    Objectives: The purpose of this study was to describe patients’ experiences of health in early RA.

    Methods: The study had a descriptive design with a qualitative content analysis approach. Individual interviews were conducted with 24 patients with early RA. In this study the patients had disease duration less than 12 months. A manifest qualitative content analysis was used to analyze the question: “What does health mean to you?”

    Results: In the early stage of RA, patients experienced health as the most important goal in their life. They described health as well-being, independence, life satisfaction and vitality. Health as well-being meant to feel good, be painless and have a good sleep to feel rested. Health as independence meant to have both physical and financial prerequisites to perform everyday activities, to exercise and being able to travel. Health as life satisfaction meant to feel joy in life, enjoy the family and to believe in the future. Health as vitality meant to have the energy, power and strength to cope with everyday life. The patients expressed that their health had been adversely affected by the RA disease and they had a strong desire for full health including well-being, independence, life satisfaction and vitality.

    Conclusions: Patients in an early stage of RA describe a strong desire to regain health in terms of well-being, independence, life satisfaction and vitality. The concept of health at early RA is similar to health at established RA in terms of well-being, independence and life satisfaction. Unique findings for patients with early RA are the description of health as vitality, and the emphasis of having energy, power and strength to cope with everyday life. Health professionals should have these different ways of experiencing health in mind when providing person-centred care to patients with early RA. Depending on the patients’ perception of health, different support strategies are needed.

  • 12.
    Larsson, Ingrid
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Nursing.
    Nurse-led Care and Patients as Partners Are Essential Aspects of the Future of Rheumatology Care2017In: Journal of Rheumatology, ISSN 0315-162X, E-ISSN 1499-2752, Vol. 44, no 6, p. 720-722Article in journal (Refereed)
  • 13.
    Larsson, Ingrid
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Nursing. Spenshult Research and Development Center, Halmstad, Sweden.
    Patients' conceptions of their own influence on good treatment response to biological therapy in chronic inflammatory arthritis2017In: Patient Preference and Adherence, ISSN 1177-889X, E-ISSN 1177-889X, Vol. 11, p. 1057-1067Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Biological therapies are common in the treatment of patients with chronic inflammatory arthritis (CIA). However, despite the fact that many patients respond well to their biological therapies, there are still a number of nonresponders. In order to design the best care for patients, it is important to understand how they conceive their own role in their treatment response.

    OBJECTIVE: To explore how patients with CIA conceive their own influence on a good treatment response to biological therapy.

    METHODS: This study had an exploratory and descriptive design with a phenomenographic approach. Interviews were conducted with 25 patients (11 women and 14 men) aged 17-79 years, with CIA who were undergoing biological therapy and who had low disease activity or were in remission.

    RESULTS: Patients with CIA undergoing biological therapy conceived their own influence on good treatment response in terms of adherence, physical activity, mental attitude, social support, and self-awareness. Adherence was described as the foundation for the patients' own influence on good treatment response. Physical activity, mental attitude, and social support reflected three essential ways of understanding patients' influence on good treatment response where the patients spoke about physical strength, mental strength, and social strength. Self-awareness reflected a comprehensive way of influencing good treatment response in which patients balanced their physical, mental, and social resources in partnership with health care professionals.

    CONCLUSION: Patients conceived that they had a responsibility for adhering to the treatment as well as achieving balance in life in order to ensure good treatment response. Self-awareness was essential for maintaining a good treatment response, and this reflected the patients' awareness of the complexity of living their lives with a chronic illness. © 2017 Larsson.

  • 14.
    Larsson, Ingrid
    Halmstad University, School of Social and Health Sciences (HOS), Centre of Research on Welfare, Health and Sport (CVHI).
    Person-centred care in rheumatology nursing in patients undergoing biological therapy2013Conference paper (Refereed)
    Abstract [en]

    Person-centred care in rheumatology nursing in patients undergoing biological therapy

    Background: The life of patients with chronic inflammatory arthritis (CIA) undergoing biological therapy is often lined by regular monitoring of both disease and biological therapy. The rheumatology nurse´s role has developed from that of an expert advisor to a co-actor, where the patients are necessary and equal participants. A rheumatology nurse with a person-centred care approach respects, supports and encourages patients to become co-actors and the rheumatology nurse is a complement to rheumatologists and other professionals in the multidisciplinary team.

    Aim: The overall aim was to explore and evaluate rheumatology nursing from a person-centred care perspective in patients undergoing biological therapy.

    Method: Focuses was on patients with CIA who were undergoing biological therapy at a rheumatology clinic in Sweden. Four studies were conducted and studies I and II had an explorative descriptive design with a phenomenographic approach. Interviews were conducted with 40 participants about their dependence on or independence of a nurse for the administration of their infusions or injections. The objective of the intervention in study III was to replace every second monitoring visit at a rheumatologist-led clinic by a visit to a nurse-led rheumatology clinic, based on person-centred care and had a randomised controlled design involving 107 patients in the trial. The primary outcome was disease activity measured by Disease Activity Score 28. Study IV had an explorative descriptive design with a qualitative content analysis approach. Interviews were conducted with 20 participants who attended the nurse-led rheumatology clinic.

    Findings: Dependence on a rheumatology nurse for administration of intravenous infusions was described as invigorating due to the regular contact with the nurse, which provided security and involvement (study I). Independence of a nurse for subcutaneous injections was achieved by struggling to cope with injecting themselves, learning about and participating in drug treatment (study II). Patients with stable CIA receiving biological therapy were monitored by a nurse-led rheumatology clinic without any difference in outcome when compared to monitoring carried out at a rheumatologist-led clinic. Replacing one of the two annual rheumatologist outpatient follow-up visits by a visit to a nurse-led clinic for the monitoring of biological therapy was found to be safe and effective (study III). A nurse-led rheumatology clinic, based on person-centred care, added value to the follow up care of patients with stable CIA undergoing biological therapy by providing a sense of security, familiarity and participation (study IV).

    Conclusion: Person-centred care is the core of rheumatology nursing in the area of biological therapy. The rheumatology nurse adds value to patient care when she/he gives patients an opportunity to talk about themselves as a person and allow their illness narrative to constitute a starting point for building collaboration, which encourages and empowers patients to play an active part in their biological therapy and become autonomous. A nurse who provides person-centred care and keeps the patients´ resources and needs in focus serves as an important guide during their healthcare journey. Rheumatology nursing will be further developed by a person-centred care approach.

  • 15.
    Larsson, Ingrid
    School of Health Sciences, Jönköping University, Jönköping, Sweden.
    Person-centred care in rheumatology nursing in patients undergoing biological therapy: An explorative and interventional study2013Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Aim: The overall aim was to explore and evaluate rheumatology nursing from a person-centred care perspective in patients undergoing biological therapy.

    Method: This thesis focuses on patients with chronic inflammatory arthritis (CIA) who were undergoing biological therapy at a rheumatology clinic in Sweden. Papers I and II had an explorative descriptive design with a phenomenographic approach. The 40 participants were interviewed about their dependence on or independence of a nurse for the administration of their infusions or injections. Paper III had a randomised controlled design involving 107 patients in the trial.  The objective of the intervention was to replace every second monitoring visit at a rheumatologist-led clinic by a visit to a nurse-led rheumatology clinic, based on person-centred care. Paper IV had an explorative descriptive design with a qualitative content analysis approach. Interviews were conducted with 20 participants who attended the nurse-led rheumatology clinic.

    Findings: Dependence on a rheumatology nurse for administration of intravenous infusions was described as invigorating due to the regular contact with the nurse, which provided security and involvement (paper I). Independence of a nurse for subcutaneous injections was understood by the patients in different ways and was achieved by struggling to cope with injecting themselves, learning about and participating in drug treatment (paper II). Patients with stable CIA receiving biological therapy were monitored by a nurse-led rheumatology clinic without any difference in outcome when compared to monitoring carried out at a rheumatologist-led clinic, as measured by the Disease Activity Score 28. Replacing one of the two annual rheumatologist outpatient follow-up visits by a visit to a nurse-led clinic for the monitoring of biological therapy was found to be safe and effective (paper III). A nurse-led rheumatology clinic, based on person-centred care, added value to the follow up care of patients with stable CIA undergoing biological therapy by providing a sense of security, familiarity and participation (paper IV).

    Conclusion: This thesis contributes a valuable insight into person-centred care as the core of rheumatology nursing in the area of biological therapy. The rheumatology nurse adds value to patient care when she/he gives patients an opportunity to talk about themselves as a person and allow their illness narrative to constitute a starting point for building collaboration, which encourages and empowers patients to play an active part in their biological therapy and become autonomous. A nurse who provides person-centred care and keeps the patients’ resources and needs in focus serves as an important guide during their healthcare journey.

  • 16.
    Larsson, Ingrid
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Andersson, M. L. E.
    Spenshult Research and Development Center, Spenshult, Halmstad, Sweden.
    Ajeganova, S.
    Leiden University Medical Center - LUMC, Leiden, Netherlands.
    Bala, V.
    Helsingborgs Lasarett, Department of Medicine, Helsingborg, Sweden.
    Svensson, Björn
    Lunds Universitet, Department of Clinical Sciences, Lund, Sweden.
    Bergman, Stefan
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Bremander, Ann
    Halmstad University, School of Business, Engineering and Science, The Rydberg Laboratory for Applied Sciences (RLAS).
    Häggström, Åsa
    Keller, Catharina
    Helsingborg Lasarett AB, Helsingborg, Sweden.
    Leden, Ido
    Centralsjukhuset, Kristianstad, Sweden.
    Teleman, Annika
    Spenshult Hospital, Olofstrom, Sweden.
    Theander, Jan
    Kristianstad Central Hospital, Department of Internal Medicine, Kristianstad, Sweden.
    ֖stenson, Anneli
    Reasons to stop drinking alcohol among patients with rheumatoid arthritis in Sweden: A mixed-methods study2018In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 8, no 12, article id e024367Article in journal (Refereed)
    Abstract [en]

    Objectives: The aims were to identify patients with rheumatoid arthritis (RA) who had stopped drinking alcohol and compare them with patients drinking alcohol, and to explore reasons for stopping drinking alcohol. Design: A sequential explanatory mixed methods design was used. Setting: Six rheumatology clinics in Southern Sweden Better Anti-Rheumatic FarmacOTherapy cohort. Participants: A total of 1509 patients completed the questions about alcohol and were included in the study. 86 of these had stopped drinking alcohol and 72 responded to the open question and their answers were analysed with qualitative content analysis. Outcome measures: The quantitative data were from a cross-sectional survey assessing disease severity, physical function (Health Assessment Questionnaire, HAQ) and health-related quality of life (EuroQol five dimensions, EQ5D), pain, fatigue, patient global assessment (PatGA) and lifestyle factors, for example, alcohol. The questions assessing alcohol included an open question ’Why have you stopped drinking alcohol?’ Results: The patients who stopped drinking alcohol were older (median (min-max) 69 (36-90) vs 66 (23-95), p=0.011), had worse HAQ (1.00 (0-2.75) vs 0.50 (0-3.00), p<0.001), worse EQ5D (0.69 (-0.02-1.00) vs 0.76 (-0.58-1.00), p<0.001) worse PatGA (5 (0-10) vs 3 (0-10), p<0.001), more pain (5 (0-10) vs 3 (0-10), p<0.001) and more fatigue (6 (0-10) vs 4 (0-10), p<0.001 compared with patients drinking alcohol. The qualitative content analysis revealed five categories describing reasons for patients with RA to stop drinking alcohol: illness and treatment; health and well-being; work and family; faith and belief; and dependences and abuse. Conclusions: The patients who had stopped drinking had worse physical functioning and higher levels in pain-related variables. Most stopped drinking due to their illness or a desire to improve health. © 2018 Author(s).

  • 17.
    Larsson, Ingrid
    et al.
    Spenshult Hospital, Sweden.
    Arvidsson, Barbro
    Halmstad University, School of Social and Health Sciences (HOS), Centre of Research on Welfare, Health and Sport (CVHI).
    Patients’ dependence on a nurse for the administration of their intravenous anti-TNF therapy: A phenomenographic study2008Conference paper (Refereed)
    Abstract [en]

    Background. Pain, stiffness and functional restrictions of the joints are the main problems for many patients with inflammatory rheumatic conditions. When conventional drugs fail to delay the development of the disease the patient may require biological treatment such as anti-TNF therapy. Some biological drugs are administered in the form of intravenous infusions and thus the patient is obliged to attend a clinic in order to receive his/her medication, which can affect everyday life as well independence. Therefore, it is important that the patient perspective is focused upon in order to improve the care. Aim. To describe variations in how patients with rheumatic conditions perceive their dependence on intravenous anti-TNF therapy provided by a nurse. Method. The study has a descriptive qualitative design and a phenomenographic approach. Interviews were conducted with 20 patients suffering from rheumatoid arthritis and spondyloarthropathies who were treated by means of intravenous anti-TNF therapy. Results. Three descriptive categories and ten sub-categories emerged: Dependence that affords security (encountering continuity, encountering competence, having accessibility and obtaining information); Dependence that creates involvement (being allowed influence and being given freedom); Dependence that invigorates (obtaining relaxation, being seen as an individual, being taken care of and encountering the environment). The patients perceived that the treatment led to feelings of security and involvement and stated that regular encounters with a nurse were invigorating. The patients’ needs should constitute the basis for the nurse’s role in the provision of intravenous anti-TNF therapy in an outpatient clinic

  • 18.
    Larsson, Ingrid
    et al.
    Jonkoping Univ, Sch Hlth Sci, Jonkoping, Sweden & Spenshult, R&D Ctr, Spenshult, Oskarstrom, Sweden.
    Arvidsson, Barbro
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Fridlund, Bengt
    Jonkoping Univ, Sch Hlth Sci, Jonkoping, Sweden.
    Teleman, A.
    Spenshult Hosp, Spenshult Hosp Rheumat Dis, Oskarstrom, Sweden.
    Bergman, Stefan
    Spenshult, R&D Ctr, Spenshult, Oskarstrom, Sweden.
    Nurse-led rheumatology clinic versus rheumatologist clinic in monitoring of biological therapy– a randomised controlled study2012In: Annals of the Rheumatic Diseases, ISSN 0003-4967, Vol. 71, no Suppl. 3, p. 121-121Article in journal (Refereed)
    Abstract [en]

    Background: Patients with rheumatic diseases treated with biological therapy are usually followed up by rheumatologists. Nurse-led rheumatology clinics have been proposed for patients with low disease activity or in remission.

    Objectives: To compare treatment outcomes from a nurse-led rheumatology clinic and a rheumatologist clinic for patients treated with biological therapy with low disease activity or in remission.

    Methods: In a prospective controlled study 107 patients were randomised into two groups with six months follow up to a nurse-led rheumatology clinic (intervention group; n=53) or to a rheumatologist clinic (control group; n=54). Inclusion criteria were ongoing biological therapy and Disease Activity Score 28 (DAS28) ≤3.2. All patients met the rheumatologist at inclusion and after 12 months. In the nurse-led rheumatology clinic the patients´ disease activity was assessed by examination of tender or swollen joints and laboratory tests. The rheumatology nurse also had a dialogue concerning the patient’s needs with regard to drug therapy, smoking habits and psychosocial aspects. Main outcome was disease activity measured by DAS28.

    Results: After 12 months 97 patients completed the study. The patients had mean age of 55.4 years, disease duration of 16.7 years, and DAS28 was 2.1, with no significant differences between the two groups. In change of DAS28 there were no differences (p=0.66) between the intervention group (0.14) or control group (0.20) from inclusion to 12 months. There were no differences (p>0.05) in mean change after 12 months in ESR, swollen and tender joints, global health and pain visual analogue scales (VAS) or Health Assessment Questionnaire (HAQ) between the patients followed up at the nurse-led rheumatology clinic or the rheumatologist clinic, see table.

     Table. Comparison of the two groups intervention group (Nurse-led rheumatology clinic) and control group (Rheumatologist clinic).

  • 19.
    Larsson, Ingrid
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Arvidsson, Susann
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Bergman, Stefan
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health promotion and disease prevention.
    Arvidsson, Barbro
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Patients’ conceptions of drug information given by a rheumatology nurse - A phenomenographic study2009In: / [ed] Svenska Läkaresällskapet, 2009Conference paper (Refereed)
    Abstract [en]

    Bakgrund Pain, stiffness and functional restriction of the joints are the main problems experienced by patients with inflammatory rheumatic conditions. The majority of patients with rheumatic diseases require several drugs every day. Adherence is highest among patients who have repeatedly been given drug information by a nurse from the start of the treatment. When developing patient information, it is essential to utilise patients' experiences. The aim of this study was to describe variations in how patients with rheumatic diseases conceive drug information given by a rheumatology nurse.

    Metod Fifteen informants who had been prescribed one or several new drugs during the period of hospitalisation were approached, agreed to take part in the study and were interviewed. Strategic sampling was carried out in order to achieve variation in conceptions of the phenomenon in terms of sex, age, marital status, education, type of rheumatic disease, disease duration and type of new drug

    Resultat Three descriptive categories comprising seven conceptions emerged and revealed how the patients conceived the information about new medication provided by a nurse. Drug information led to Autonomy, Power and Security. Autonomy was based on the patients' experiences of taking responsibility and participating. Power meant gaining knowledge and being motivated to take the drug. Security involved trust, experiencing care and access to a rheumatology nurse.

    Sammanfattning Patients with a rheumatic disease experienced that drug information from a rheumatology nurse gave them autonomy, power and security. These factors could explain why information from a nurse increases drug treatment adherence.

  • 20.
    Larsson, Ingrid
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Arvidsson, Susann
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Bergman, Stefan
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Arvidsson, Barbro
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Patients’ conceptions of drug information given by the rheumatology nurse2009In: Annals of the Rheumatic Diseases, ISSN 0003-4967, E-ISSN 1468-2060, Vol. 68, no Suppl. 3, p. 781-781Article in journal (Refereed)
    Abstract [en]

    Background: Pain, stiffness and functional restriction of the joints are the main problems for patients with inflammatory rheumatic conditions. The majority of patients with rheumatic diseases have a need for daily intake of several drugs. Compliance in drug treatment is higher amongst patients that have been given drug information by a nurse at repeated occasions from the start of the treatment. In the development of patient information, it is essential to take advantage of patients' experiences.

    Objectives: The purpose of this study was to describe variations in how patients with rheumatic diseases conceive drug information given by a rheumatology nurse.

    Methods: The study had a descriptive qualitative design with a phenomenographic approach. When employing such an approach, the main aim is to describe how a phenomenon is conceived by different individuals. Fifteen patients with rheumatic diseases who had received a new drug during a hospital visit were approached, agreed to take part in the study and were interviewed. Strategic sampling in terms of sex, age, marital status, education, rheumatic diseases, and illness duration, was carried out in order to achieve variation in conceptions of the phenomenon.

    Results: Three descriptive categories emerged: (1) Autonomy (own responsibility and participation), (2) Power (knowledge and motivation), (3) Security (trust, care and accessibility). Autonomy was based on the patients' experiences from taking their own responsibility and participation. Power meant to gain knowledge and motivation to take the drug. Security was to receive trust, experience care, and to have accessibility to a rheumatology nurse.

    Conclusion: Patients with rheumatic diseases experiences that drug information from a rheumatology nurse gives them autonomy, power and security. These could be essential for the patients to manage their daily life, where drug treatment is one part.

    Disclosure of Interest: None declared

  • 21.
    Larsson, Ingrid
    et al.
    Spenshult hospital, Oskarström, Sweden.
    Arvidsson, Susann
    Spenshult hospital, Oskarström, Sweden.
    Bergman, Stefan
    Spenshult hospital, Oskarström, Sweden.
    Arvidsson, Barbro
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Patients´conceptions of drug information given by a rheumatology nurse: a phenomenographic study2010In: Musculoskeletal Care, ISSN 1478-2189, E-ISSN 1557-0681, Vol. 8, no 1, p. 36-45Article in journal (Refereed)
    Abstract [en]

    Background:

    Pain, stiffness and functional restriction of the joints are the main problems experienced by patients with inflammatory rheumatic conditions. The majority of patients with rheumatic diseases require several drugs every day. Adherence is highest among patients who have repeatedly been given drug information by a nurse from the start of the treatment. When developing patient information, it is essential to utilize patients' experiences.

    Objectives:

    The purpose of this study was to describe variations in how patients with rheumatic diseases perceive drug information given by a rheumatology nurse.

    Methods:

    The study had a descriptive qualitative design with a phenomenographic approach. Fifteen inpatients with rheumatic diseases who had received a new drug agreed to take part in the study and were interviewed.

    Results:

    Three descriptive categories emerged: autonomy, power and security. Autonomy was based on patients' experiences of taking responsibility and participating. Power meant gaining knowledge and being motivated to take the drug. Security involved trust, experiencing care and access to a rheumatology nurse.

    Conclusions:

    For patients with a rheumatic disease, drug information from a rheumatology nurse gave them autonomy, power and security. These factors could explain why information from a nurse increases adherence to drug treatment.

  • 22.
    Larsson, Ingrid
    et al.
    R&D Centre, Spenshult, Oskarström, Sweden.
    Bergman, Stefan
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health promotion and disease prevention. R&D Centre, Spenshult, Oskarström, Sweden & Lund University, Lund, Sweden.
    Bremander, Ann
    Halmstad University, School of Business, Engineering and Science, Biological and Environmental Systems (BLESS), Biomechanics and Biomedicine. R&D Centre, Spenshult, Oskarström, Sweden & Lund University, Lund, Sweden.
    OP0094-HPR Person-Centred Care (PCC) May Improve Health Care Consumer Skills More than Regular Care - an RCT in Patients with CIA Undergoing Biological Therapy2015In: Annals of the Rheumatic Diseases, ISSN 0003-4967, E-ISSN 1468-2060, Vol. 74, no Suppl. 2, p. 104-104Article in journal (Refereed)
    Abstract [en]

    Background: In person-centred care (PCC) a holistic approach, individualized care, empowerment and self-management are cornerstones. Patients are seen as persons with resources and are encouraged to take an active role in their own health care to become skilled or effective consumers of health care. Little is known of the impact of PCC vs. regular care on patients’ skills as health care consumers.

    Objectives: To study the impact on effective consumers’ skills over 12 months in patients undergoing biological therapy and randomly assigned to either a nurse-led rheumatology clinic (NLC) based on PCC or to a rheumatologist-led clinic (RLC) as measured by the Effective Consumer Scale (EC17).

    Methods: A 12 month RCT in 107 patients with chronic inflammatory arthritis.1 Inclusion criteria were ongoing biological therapy and a DAS28 ≤3.2. All patients met a rheumatologist at inclusion and after 12 months, while the 6 month follow-up was performed in the assigned group, either at a NLC (PCC) or at an RLC (regular care). Outcome measure was the EC17, developed and endorsed by the OMERACT to measure skills in decision-making, navigation and negotiation with health care professionals (0-100, worse to best). Minimally Important Difference (MID) of EC17 was calculated (≥ 0.5 SD of the mean baseline score)2 and patients categorized in three EC17 groups: improvement, no change or deterioration of consumer skills. Differences between intervention groups and EC17 groups were calculated with Chi2. Global health, pain and HAQ were measured for descriptive purposes.

    Results: A total of 101 patients completed the EC17 at baseline (mean 84 SD 10) and after 12 months. Twelve patients had baseline scores higher than 95 and a MID in improvement could not be measured why they were excluded, leaving 89 patients in the trial (mean age 53 SD 12 years, mean disease duration 16 SD 11 years, 54% women, RLC n=44, NLC n=45). At baseline mean (SD) DAS28 was 2.05 (0.68), global health 22 (17), pain 23 (18) and HAQ 0.55 (0.51). A larger proportion of patients improved according to EC17 in the NLC compared with the RLC (42% vs. 23%), and a smaller proportion deteriorated (16% vs. 23%; table). The differences were not statistically significant (p=0.14), probably due to a small sample size.

    Table. Proportion of patients who deteriorated (≥5 units), remained stable or improved (≥5 units) in EC17 over 12 months monitored at a NLC or an RLC, total n= 89.

    EC17 deterioration

    NLC 16%   (n=7)

    RLC 23%    (n=10)

    EC17 stable

    NLC 42%   (n=19)

    RCL 54%   (n=24)

    EC17 improvement

    NLC 42%   (n=19)

    RLC 23%   (n=10)

    Conclusions: A nurse-led rheumatology clinic based on person-centred care resulted in a greater proportion of patients who reported a long term improvement in skills as consumers of health services compared with patients monitored by a rheumatologist-led clinic. Larger studies are needed to confirm the result.

    References: 1. Larsson I, et al. Randomized controlled trial of a nurse-led rheumatology clinic for monitoring biological therapy. J Adv Nurs 2014;70(1):164-75.

    2. Strand V, et al. It's good to feel better but it's better to feel good and even better to feel good as soon as possible for as long as possible. Response criteria and the importance of change at OMERACT 10. J Rheumatol 2011;38(8):1720-7.

  • 23.
    Larsson, Ingrid
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health promotion and disease prevention. FoU Spenshult, Halmstad, Sweden.
    Bergman, Stefan
    FoU Spenshult, Halmstad, Sweden; Lund University, Lund, Sweden & The Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Bremander, Ann
    Halmstad University, School of Business, Engineering and Science, Biological and Environmental Systems (BLESS), Biomechanics and Biomedicine. FoU Spenshult, Halmstad, Sweden & Lund University, Lund, Sweden.
    Person-Centred Care Can Help Patients to Become More Effective Consumers in the Use of Health Information than Regular Care – an RCT in Patients with Arthritis Undergoing Biological Therapy2015In: Arthritis & Rheumatology, ISSN 2326-5191, E-ISSN 2326-5205, Vol. 67, no Suppl. S10, article id 1495Article in journal (Refereed)
    Abstract [en]

    Background/Purpose:

    Person-centred care (PCC) is a holistic approach with respectful and individualized care allowing negotiation of care where persons with health problems are empowered to be involved in health decisions. Patients’ illness narratives constitute a starting point for building a collaboration with health care professionals and to empower them to play an active role in their health care. Little is known of the impact of PCC vs. regular care on patients’ skills as health care consumers. The aim was to study the impact on effective consumers’ skills over 6 and 12 months as measured by the Effective Consumer Scale (EC17) in patients undergoing biological therapy and randomly assigned to either a nurse-led rheumatology clinic (NLC) based on PCC or to a rheumatologist-led clinic (RLC) based on regular care.

    Methods:

    A 12 month RCT in 107 patients with chronic inflammatory arthritis1. Inclusion criteria were ongoing biological therapy and a DAS28 ≤3.2. All patients met a rheumatologist at inclusion and after 12 months, while the 6 month follow-up was randomized to either at an NLC (PCC) or at an RLC (regular care). Outcome measure was the EC17, developed and endorsed by the OMERACT, including five subscales; 1. Use of health information, 2. Clarifying personal priorities, 3. Communicating with others, 4. Negotiating roles and 5. Deciding and taking action. EC17 total score ranges from 0-100, worse to best. Differences between and within NLC and RLC were analyzed with Friedmans’ test or Mann Whitney U-test.

    Results:

    After 12 months 97 patients completed the RCT (NLC n=47, RLC n=50), mean (SD) age 55.4 (12.7) years, disease duration 16.7 (11.5) years, DAS28 2.1 (0.7), HAQ 0.54 (0.38), global health 20.4 (17.1), pain 21.1 (18.0) and 56% were women. There were no statistically significant differences within or between the two intervention groups at baseline nor in EC17 total score mean (SD) at baseline (NLC 83.5 (9.4) vs. RLC 83.2 (10.8), 6 months (NLC 85.4 (10.4) vs. RLC 82.9 (10.9) and 12 months (NLC 85.3 (11.1) vs. RLC 82.3 (10.9)). However, in NLC there was a statistically significant improvement in EC17 subscale “1. Use of health information” at both 6 and 12 months (p=0.041 and p=0.004 respectively).

    Conclusion:

    Replacing just one of three visits over 12 months to an NLC based on PCC instead of an RLC based on regular care resulted in more effective consumers concerning the use of health information. Larger studies over longer time frames focusing on PCC are needed to better understand its full impact on effective consumer skills measured by EC17.

    References:

    1. Larsson I, et al. Randomized controlled trial of a nurse-led rheumatology clinic for monitoring biological therapy. J Adv Nurs 2014;70:164-75.

  • 24.
    Larsson, Ingrid
    et al.
    Research and Development Centre, Spenshult Hospital, Oskarström, Sweden.
    Bergman, Stefan
    Research and Development Centre, Spenshult Hospital, Oskarström, Sweden.
    Fridlund, Bengt
    School of Health Sciences, Jönköping University, Jönköping, Sweden.
    Arvidsson, Barbro
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Patients' dependence on a nurse for the administration of their intravenous anti-TNF therapy: A phenomenographic study2009In: Musculoskeletal Care, ISSN 1478-2189, E-ISSN 1557-0681, Vol. 7, no 2, p. 93-105Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Pain, stiffness and functional restriction of the joints are the main problems for many patients with inflammatory rheumatic conditions. When conventional drugs fail to delay the development of the disease, the patient may require biological treatment such as anti-TNF therapy. Some biological drugs are administered in the form of intravenous infusions and thus the patient is obliged to attend a clinic in order to receive his/her medication, which can affect everyday life as well as independence. It is therefore important to focus on the patient perspective.

    AIM: The aim of this study was to describe variations in how patients with rheumatic conditions conceive their dependence on a nurse for the administration of their intravenous anti-TNF therapy.

    METHOD: The study had a descriptive qualitative design with a phenomenographic approach. Interviews were conducted with 20 patients.

    RESULT: Three descriptive categories and seven sub-categories emerged: Dependence that affords security (encountering continuity, encountering competence and obtaining information); Dependence that creates involvement (being allowed influence and being given freedom); Dependence that invigorates (obtaining relaxation and encountering the environment).

    CONCLUSION: The patients had not reflected on the fact that they were dependent on a nurse for the administration of their intravenous anti-TNF therapy, which may be due to their possibility to influence the treatment. The patients' needs should constitute the basis for the nurse's role in the provision of care.

  • 25.
    Larsson, Ingrid
    et al.
    School of Health Sciences, Jönköping University, Jönköping, Sweden.
    Bergman, Stefan
    Research and Development Centre, Spenshult Hospital, Oskarström, Sweden.
    Fridlund, Bengt
    School of Health Sciences, Jönköping University, Jönköping, Sweden.
    Arvidsson, Barbro
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Patients’ experiences of a nurse-led rheumatology clinic in Sweden: a qualitative study2012In: Nursing and Health Sciences, ISSN 1441-0745, E-ISSN 1442-2018, Vol. 14, no 4, p. 501-507Article in journal (Refereed)
    Abstract [en]

    In this study, patients’ experiences of a nurse-led rheumatology clinic for those undergoing biological therapy are discussed. The study had an explorative design, based on a qualitative content analysis with an inductive approach. Strategic sampling was used in order to achieve variations in experiences of a nurse-led clinic. Interviews were conducted with 20 participants, and the analysis resulted in the theme “the nurse-led rheumatology clinic provided added value to patient care”. The participants’ experiences of the encounter with the nurse led to a sense of security (due to competence and accessibility), familiarity (due to confirmation and sensitivity), and participation (due to exchange of information and involvement). Replacing every second visit to a rheumatologist with one to a nurse added value to the rheumatology care,making it more complete. Nurses and rheumatologists complemented each other,as they approached patients from different perspectives. This study suggests that a nurse-led rheumatology clinic adds value to the quality of care for patients inrheumatology units.

  • 26.
    Larsson, Ingrid
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Bergman, Stefan
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health promotion and disease prevention.
    Fridlund, Bengt
    Hälsohögskolan Jönköping.
    Arvidsson, Barbro
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Patients’ experiences of nurse-led follow-up in biological therapy – a qualitative study2011In: / [ed] The European Leage Against Rheumatism, London: BMJ , 2011, p. 755-755Conference paper (Refereed)
    Abstract [en]

    Background: Pain, stiffness and functional restrictions of the joints are the main problems for patients with inflammatory rheumatic diseases. When conventional drugs fail to delay the development of the disease the patients may require biological therapy. These patients usually have rheumatologist follow-up twice a year. Nurse-led clinics have been proposed for patients treated with biological therapy that are in low disease activity or remission (Disease Activity Score, DAS <3.2). In an ongoing study at a Swedish rheumatology clinic every other rheumatologist follow-up has been replaced by a rheumatology nurse-led follow-up. At the nurse-led follow-up the patients' disease activity is assessed by examining tender or swollen joints and laboratory tests.Objectives: The purpose of this study was to describe patients' experiences of nurse-led follow-up in biological therapy.Methods: The study had a descriptive design with a qualitative content analysis approach. In qualitative content analysis the interpretations vary in depth and level of abstraction: the manifest content describes the visible, what the text says and creating categories, the latent content involves an interpretation of the underlying meaning of the text, what the text talks about and creating a theme. Seventeen interviews were conducted based on a strategic sampling in order to achieve variation in experiences of nurse-led follow-up in terms of sex, age, civil status, education, duration of disease and therapy and ways of administration.Results: The content analysis of the interviews resulted in the theme "The rheumatology nurse promotes patients with added value" which was based on four categories: familiarity, security, availability and participatory: Familiarity meant that it was easier to ask the rheumatology nurse about disease, treatment and how to live with a chronic disease than the rheumatologist. Patients experienced security in the rheumatology nurse's knowledge and skill. Availability meant that it was easy to contact the rheumatology nurse who spent time to patients' needs. Patients experienced being participatory in their biological therapy and in the rheumatology nurse's examination of the disease activity.Conclusions: The rheumatology nurse follow-up resulted in that patients experienced familiarity, security, availability and being participatory in their biological therapy. The rheumatology nurse promoted patients from another perspective, than the rheumatologist, in the rheumatology care. By replacing every other rheumatologist follow-up with a rheumatology nurse-led follow-up for patients with biological therapy, who are in low disease activity or remission, the rheumatology care will be more complete. A rheumatology nurse and a rheumatologist have different perspectives and complement each other. When patients are given the opportunity to meet both professions regularly they are able to receive optimal rheumatology care.

    Disclosure of Interest: None Declared

    Citation: Ann Rheum Dis 2011;70(Suppl3):755

  • 27.
    Larsson, Ingrid
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Bergman, Stefan
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health promotion and disease prevention.
    Fridlund, Bengt
    Hälsohögskolan Jönköping.
    Arvidsson, Barbro
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Patients’ experiences of rheumatology nurse-led clinic in biological therapy – a qualitative study2011In: / [ed] Svenska Läkaresällskapet, 2011Conference paper (Refereed)
    Abstract [en]

    Bakgrund Nurse-led clinics have been proposed for patients with rheumatic diseases treated with biological therapy who are in low disease activity or remission (Disease Activity Score, DAS <3.2). In an ongoing study at a Swedish rheumatology clinic every other rheumatologist follow-up has been replaced by a rheumatology nurse-led follow-up. At the nurse-led follow-up the patients´ disease activity is assessed by examining tender or swollen joints and laboratory tests. The purpose of this study was to describe patients´ experiences of rheumatology nurse-led follow-up in biological therapy.

    Metod The study had a descriptive design with a qualitative content analysis approach. Strategic sampling was carried out in order to achieve variation in experiences of nurse-led follow-up. Interviews were conducted with 20 patients (10 males and 10 females, 10 i.v infusions and 10 s.c injections as way of administration, 34-76 years of age, and duration of illness 3-41 years).

    Resultat The content analysis of the interviews resulted in the theme "The rheumatology nurse promotes patients with added value" Which was based on four categories: familiarity, security, availability and participatory: Familiarity meant that it was easier to ask the rheumatology nurse about disease, treatment and how to live with a chronic disease than the rheumatologist. Patients experienced security in the rheumatology nurse’s knowledge and skill. Availability meant that it was easy to contact the rheumatology nurse who spent time to patients' needs. Patients experienced being participatory in the biological therapy and in the rheumatology nurse’s examination of the disease activity.

    Sammanfattning The rheumatology nurse-led follow-up resulted in that patients experienced familiarity, security, availability and being participatory in their biological therapy. The rheumatology nurse promoted patients from another perspective, than the rheumatologist. By replacing every other rheumatologist follow-up with a rheumatology nurse-led follow-up for patients with biological therapy, who are in low disease activity or remission, the rheumatology care will be more complete. A rheumatology nurse and a rheumatologist have different perspectives and complement each other. When patients are given the opportunity to meet both professions regularly they are able to receive optimal rheumatology care.

  • 28.
    Larsson, Ingrid
    et al.
    School of Health Sciences, Jönköping University.
    Bergman, Stefan
    Research and Development Centre, Spenshult Hospital, Oskarström, Sweden.
    Fridlund, Bengt
    School of Health Sciences, Jönköping University.
    Arvidsson, Barbro
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Patients' independence of a nurse for the administration of subcutaneous anti-TNF therapy: a phenomenographic study2010In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 5, no 2, p. 5146-1-5146-10Article in journal (Refereed)
    Abstract [en]

    Rheumatology nursing supports patients to manage their lives and live as independently as possible without pain, stiffness and functional restrictions. When conventional drugs fail to delay the development of the rheumatic disease, the patient may require biological treatment such as self-administered subcutaneous anti-tumour necrosis factor (TNF) therapy. It is therefore important that the patient perspective focuses on the life-changing situation caused by the administration of regular subcutaneous injections. The aim of this study was to describe variations in how patients with rheumatic diseases experience their independence of a nurse for administration of subcutaneous anti-TNF therapy. The study had a descriptive, qualitative design with a phenomenographic approach and was carried out by means of 20 interviews. Four ways of understanding the patients' experience of their subcutaneous anti-TNF therapy and independence of a nurse emerged: the struggling patient; the learning patient; the participating patient; the independent patient. Achieving independence of a nurse for subcutaneous anti-TNF injections can be understood by the patients in different ways. In their strive for independence, patients progress by learning about and participating in drug treatment, after which they experience that the injections make them independent.

  • 29.
    Larsson, Ingrid
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Bergman, Stefan
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health promotion and disease prevention.
    Fridlund, Bengt
    Hälsohögskolan Jönköping.
    Arvidsson, Barbro
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Patients’ independence of a nurse for the administration of their subcutaneous anti-TNF therapy: A phenomenographic study2010Conference paper (Refereed)
    Abstract [en]

    Background: Pain, stiffness and functional restrictions of the joints are the main problems for patients with inflammatory rheumatic diseases. When conventional drugs fail to delay the development of the disease the patient may require biological treatment such as anti-TNF therapy. Some biological drugs are administered in the form of subcutaneous injections by patients themselves. It is therefore important that the patient perspective is focused upon the life-changing situation due to the administration of regular subcutaneous injections.

    Objectives: The purpose of this study was to describe variations in how patients with rheumatic diseases conceive their independence of a nurse for the administration of their subcutaneous anti-TNF therapy.

    Methods: The study had a descriptive qualitative design with a phenomenographic approach. Twenty interviews were conducted based on a strategic sampling in order to achieve variation in conceptions of the phenomenon in terms of sex, age, marital status, education, illness duration, duration of medication, distance between home-hospital, and experience of intravenous infusions.

    Results: Four descriptive categories emerged: 1. Struggling for independence: The patients experienced a struggle and limitations in their lives by the self-administration of the subcutaneous injections. 2. Learning for independence: Patients experienced a learning process by the self-administration of the subcutaneous injections. 3. Participating for independence; Patients experienced control over their lives by themselves administers the subcutaneous injections. 4. Freedom through independence: Patients experienced that they could manage their lives and live as independently as possible by the self-administration of the subcutaneous injections.

    Conclusion: Independence of a nurse at the subcutaneous anti-TNF injections is a process. There is a striving for independence in which patients are taking themselves further by learning and participating in drug treatment and then experience the injection provides independence. Patients under treatment with subcutaneous anti-TNF injections are at different phases in the process of independence; this is not depending on how long they have self-administered subcutaneous injections.

    Disclosure of Interest: None declared

    Citation: Ann Rheum Dis 2010;69(Suppl3):730

    Nursing

  • 30.
    Larsson, Ingrid
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Bergman, Stefan
    Spenshult, Oskarström, Sweden.
    Fridlund, Bengt
    Hälsohögskolan Jönköping.
    Arvidsson, Barbro
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Patients with rheumatic diseases and their conceptions of regular self-administered subcutaneous anti-TNF injections2010In: / [ed] International Journal of Qualitative Studies on Health and Well-being, 2010Conference paper (Refereed)
    Abstract [en]

    Background: Pain, stiffness and functional restrictions of the joints are the main problems for patients with inflammatory rheumatic diseases. When conventional drugs fail to delay the development of the disease the patient may require biological treatment such as anti-TNF therapy. Some biological drugs are administered in the form of subcutaneous injections by patients themselves. It is therefore important that the patient perspective is focused upon the life-changing situation due to the administration of regular subcutaneous injections.

    Aim: The aim of this study was to describe variations in how patients with rheumatic diseases experience the self-administration of their subcutaneous anti-TNF therapy.

    Methods: The study had a descriptive qualitative design with a phenomenographic approach. Twenty interviews were conducted based on a strategic sampling in order to achieve variation in conceptions of the phenomenon in terms of sex, age, marital status, education, illness duration, duration of medication, distance between home-hospital, and experience of intravenous infusions.

    Results: Four descriptive categories emerged: 1. The struggling patient: The patients experienced a struggle and limitations in their lives by the self-administration of the subcutaneous injections. 2. The learning patient: Patients experienced a learning process by the self-administration of the subcutaneous injections. 3. The participating patient: Patients experienced control over their lives by themselves administers the subcutaneous injections. 4. The independent patient: Patients experienced that they could manage their lives and live as independently as possible by the self-administration of the subcutaneous injections.

    The administration of regular subcutaneous anti-TNF injections is a process. The striving for independence in which patients are taking themselves further by learning and participating in drug treatment and then experience that the injection provides independence. Patients under treatment with subcutaneous anti-TNF injections are at different phases in the process of independence; this is not depending on how long they have self-administered subcutaneous injections.

  • 31.
    Larsson, Ingrid
    et al.
    FOU-center, Spenshults sjukhus, Spenshult, Sverige.
    Bergsten, Ulrika
    FOU-center, Spenshults sjukhus, Spenshult, Sverige.
    Omvårdnad av patienter med en reumatisk sjukdom2013In: Ortopedisk vård och rehabilitering / [ed] Ami Hommel & Carina Bååth, Lund: Studentlitteratur, 2013, 1, p. 49-58Chapter in book (Other (popular science, discussion, etc.))
  • 32.
    Larsson, Ingrid
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Fridlund, Bengt
    Jönköping University, Jönköping, Sweden.
    Arvidsson, Barbro
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Bergman, Stefan
    Spenshult, Oskarström, Sweden.
    Biological therapy could be monitored by a rheumatology nurse-led clinic without any differences in outcome – a randomised controlled study2012Conference paper (Refereed)
    Abstract [en]

    Background: Patients with rheumatic diseases treated with biological therapy are usually followed up by rheumatologists. Nurse-led rheumatology clinics have been proposed for patients who are in low disease activity or remission.

    Objectives: To compare treatment outcomes from a nurse-led rheumatology clinic and a rheumatologist clinic for patients treated with biological therapy with low disease activity or in remission.

    Methods: In a prospective controlled study 107 patients were randomised into two groups with six months follow up to a rheumatology nurse (intervention group; n=53) or to a rheumatologist (control group; n=54). Inclusion criteria were ongoing biological therapy and Disease Activity Score 28 (DAS28) ≤3.2. All patients met the rheumatologist at inclusion and after 12 months. In the nurse-led rheumatology clinic the patients´ disease activity was assessed by examination of tender or swollen joints and laboratory tests. The rheumatology nurse also had a dialogue concerning the patient’s needs with regard to drug therapy, smoking habits and psychosocial aspects. After 12 months 97 patients completed the study. Main outcome was disease activity measured by DAS28.

    Results: Patients had mean age of 55.4 years and disease duration of 16.7 years. DAS28 was 2.1. At inclusion there were no significant differences in DAS28 between the groups. There were no differences (p=0.67) in change of DAS28 between the intervention group (0.14) or control group (0.20) from inclusion to 12 months.

    Conclusions: In patients with low disease activity biological therapy could be monitored by a nurse-led rheumatology clinic without any differences in outcome as measured by DAS28.

  • 33.
    Larsson, Ingrid
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Fridlund, Bengt
    Hälsohögskolan Jönköping, Jönköping, Sverige.
    Arvidsson, Barbro
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Bergman, Stefan
    Spenshult, Oskarström, Sverige.
    Sjuksköterskemottagning för patienter med en reumatisk sjukdom behandlade med biologiska läkemedel – ett randomiserat, kontrollerat försök jämförande sjuksköterskemottagning med läkarmottagning2012Conference paper (Refereed)
    Abstract [sv]

    Bakgrund Målet med behandling av reumatiska sjukdomar är att ta kontroll över ledsmärta och svullnad, reducera ledskador samt förebygga funktionsnedsättningar. För patienter med otillräcklig respons på traditionella läkemedel har forskningen inom reumatologin varit av stor betydelse och medfört utveckling av biologiska läkemedel. Behandling med biologiska läkemedel för patienter med reumatisk sjukdom följs vanligtvis upp av en reumatolog. För patienter som är lågaktiva i sin sjukdom eller i remission har uppföljning via en sjuksköterskemottagning föreslagits. Syfte var att jämföra sjuksköterskemottagning med läkarmottagning avseende behandlingsresultat för patienter behandlade med biologiska läkemedel med låg eller ingen sjukdomsaktivitet.

    Metod Ett randomiserat kontrollerat öppet försök med 12 månaders uppföljning genomfördes mellan oktober 2009 och augusti 2011. Avsikten var att ersätta ett av de två årliga läkarbesöken med ett sjuksköterskebesök. En sjuksköterskemottagning utformades utifrån en personcentrerad vård med patientens behov i fokus. Inklussionskriterier var patienter med en reumatisk sjukdom behandlade med biologiskt läkemedel och en sjukdomsaktivitet, Disease Active Score 28 (DAS28) ≤3.2. Av 107 patienter randomiserades 53 patienter till uppföljning av sjuksköterska och 54 patienter till uppföljning av läkare. Hypotesen var att behandlingsresultatet på en sjuksköterskemottagning inte skulle vara sämre än på en läkarmottagning vid 12 månaders uppföljning. Huvudutfallsmått var DAS28.

    Resultat Efter 12 månader hade 47 patienter i sjuksköterskegruppen och 50 patienter i läkargruppen fullföljt studien. Patienterna hade en medelålder på 55.4 år, sjukdomsduration på 16.7 år och DAS28 var 2.1. Det fanns ingen statistiskt signifikant skillnad mellan grupperna. Efter 12 månader var det inte någon statistisk signifikant skillnad (p=0.66) i förändring av DAS28 mellan sjuksköterskegruppen (0.14) eller läkargruppen (0.20). I utfallsmåtten sänka, svullna och ömma leder, global hälsa och smärta (VAS) eller Health Assessment Questionnaire (HAQ) var det inte heller någon statistisk signifikant skillnad i förändring efter 12 månader mellan grupperna. Båda grupperna var lika nöjda med vården och säkra på att få hjälp från reumatologmottagningen vid problem med lederna.

    Sammanfattning Patienter med en stabil reumatisk sjukdom behandlade med biologiskt läkemedel kan följas upp vid en sjuksköterskemottagning utan någon skillnad i behandlingsresultat med avseende på DAS28.

  • 34.
    Larsson, Ingrid
    et al.
    Jönköping University, Jönköping, Sweden.
    Fridlund, Bengt
    Jönköping University, Jönköping, Sweden.
    Arvidsson, Barbro
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Bergman, Stefan
    Spenshult Hospital, R&D Center, Spenshult Hospital, Oskarström, Sweden.
    Treatment Outcomes From a Nurse-Led Rheumatology Clinic in Monitoring of anti-TNF Therapy – a Randomised Controlled Trial2012In: Arthritis and Rheumatism, ISSN 0004-3591, E-ISSN 1529-0131, Vol. 64, no 10, p. S667-S667, article id 1559Article in journal (Refereed)
    Abstract [en]

    Background: Patients with chronic inflammatory arthritis (CIA) treated with anti-TNF therapy are usually followed up by rheumatologists. Nurse-led rheumatology clinics have been proposed for patients with low disease activity or in remission. The purpose of this trial was to compare treatment outcomes from a nurse-led rheumatology clinic and a rheumatologist clinic for patients undergoing anti-TNF therapy with low disease activity or in remission.

    Methods: A randomized controlled trial (RCT) with a 12-month follow-up was conducted with 107 patients randomised into two groups with a 6-month follow up to a nurse-led rheumatology clinic based on a person-centred care (intervention group; n=53) or to a rheumatologist-led clinic (control group; n=54). The intention of the interventional trial was to replace one of the two annual rheumatologist monitoring visits by a nurse-led rheumatology monitoring visit for patients undergoing anti-TNF therapy. Inclusion criteria were patients undergoing anti-TNF therapy and Disease Activity Score 28 (DAS28) ≤3.2. The hypothesis was that the outcomes from nurse-led clinic will not be inferior to those obtained by rheumatologist-led clinic at 12-month follow-up. Primary outcome was disease activity measured by DAS28.

    Results: After 12 months 47 patients in the intervention group and 50 patients in the control group completed the trial and there were no differences (p=0.66) in mean change of DAS28 between the intervention or control group. There were no differences (p>0.05) in mean change in Visual Analogue Scales (VAS) for pain, Health Assessment Questionnaire (HAQ), satisfaction or security with the rheumatology care  between the two groups, see table.

    Conclusion: In monitoring of anti-TNF therapy treatment outcomes for patients at a nurse-led rheumatology clinic are not inferior to those obtained by rheumatologist-led clinic at 12-month follow-up. The follow-up care of anti-TNF therapy may advantageously be performed by a nurse-led clinic based on a person-centred care. The results from this trial demonstrated that patients with CIA undergoing anti-TNF therapy, with low disease activity or in remission, could be monitored by a nurse-led rheumatology clinic without any differences in outcome as measured by DAS28.

  • 35.
    Larsson, Ingrid
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health promotion and disease prevention. R&D Centre, Spenshult Hospital for Rheumatic Diseases, Halmstad.
    Fridlund, Bengt
    School of Health Sciences, Jönköping University, Jönköping, Sweden.
    Arvidsson, Barbro
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI). R&D Centre, Spenshult Hospital for Rheumatic Diseases, Halmstad.
    Teleman, Annika
    R&D Centre, Spenshult Hospital for Rheumatic Diseases, Halmstad.
    Bergman, Stefan
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health promotion and disease prevention. R&D Centre, Spenshult Hospital for Rheumatic Diseases, Halmstad.
    Biological therapy can be monitored more cost effectively by a nurse-led rheumatology clinic2014In: Annals of the Rheumatic Diseases, ISSN 0003-4967, E-ISSN 1468-2060, Vol. 72, Suppl. 3, p. 139-140Article in journal (Refereed)
    Abstract [en]

    Background: Patients with chronic inflammatory arthritis (CIA) treated with biological therapy are usually monitored by rheumatologists. Research shows that a nurse-led rheumatology clinic is safe and effective in monitoring biological therapy (1) and contributed added value in patients within rheumatology care, because the encounter with the nurse led to a sense of security, familiarity and participation (2).

    Objectives: To compare the cost of monitoring biological therapy in a nurse-led rheumatology clinic with those of a rheumatologist-led clinic in patients with low disease activity or in remission.

    Methods: Cost comparison was based on data from a 12 month randomised controlled trial (1). A total of 107 patients were randomly assigned to either a rheumatologist-led clinic or to a nurse-led rheumatology clinic. The purpose of the intervention was to replace one of two annual monitoring visits at the rheumatologist-led clinic (control group; n=54) by a visit to a nurse-led rheumatology clinic (intervention group; n=53), based on person-centred care. Inclusion criteria were ongoing biological therapy and Disease Activity Score 28 (DAS28) ≤3.2. All patients met the rheumatologist at inclusion and after 12 months. All outpatient visits, team rehabilitation and all the telephone advice at the Rheumatology Clinic were registered for the patients who participated in the trial. Main outcome measures were direct costs related to rheumatology care during the 12 month follow-up period.

    Results: After 12 months 97 patients completed the study. At the inclusion the patients had mean age of 55.4 years, disease duration of 16.7 years, and DAS28 was 2.1, with no significant differences between the two groups. There was no mean difference in changes in clinical outcome between the two groups (DAS28 -0.06; p=0.66). The total annual cost of team rehabilitation in rheumatology care, per patient monitored by the nurse-led rheumatology clinic was €580 compared with €1278 for monitoring by a rheumatologist-led clinic, translating in a €698 (55%) lower annual cost. The annual cost of just the outpatient rheumatology care provided by rheumatologist and rheumatology nurse, per patient was €457 for monitoring by the nurse-led rheumatology clinic compared with €598 for monitoring by a rheumatologist-led clinic, translating in a €141 (24%) lower annual cost.

    Conclusions: Patients with stable CIA undergoing biological therapy can be monitored more cost effectively by a nurse-led rheumatology clinic compared to a rheumatologist-led clinic, with no difference in clinical outcome as measured by DAS28.

    References

    1. Larsson et al. (2014). Randomized controlled trial of a nurse-led rheumatology clinic for monitoring biological therapy. J Adv Nurs, 70(1): 164-175.
    2. Larsson et al. (2012). Patients’ experiences of a nurse-led rheumatology clinic in Sweden – a qualitative study in patients undergoing biological therapy. Nurs Health Sci, 14(4): 501-507.
  • 36.
    Larsson, Ingrid
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI). Jönköping University, School of Health Sciences, Jönköping, Sweden & Spenshult Hospital, Oskarström, Sweden.
    Fridlund, Bengt
    Jönköping University, School of Health Sciences, Jönköping, Sweden.
    Arvidsson, Barbro
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI). Spenshult Hospital, Oskarström, Sweden.
    Teleman, Annika
    Spenshult Hospital, Oskarström, Sweden.
    Bergman, Stefan
    Randomized controlled trial of a nurse-led rheumatology clinic for monitoring biological therapy2013In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 70, no 1, p. 164-175Article in journal (Refereed)
    Abstract [en]

    AIM: To compare and evaluate the treatment outcomes of a nurse-led rheumatology clinic and a rheumatologist-led clinic in patients with low disease activity or in remission who are undergoing biological therapy.

    BACKGROUND: Patients with chronic inflammatory arthritis treated with biological therapy are usually monitored by rheumatologists. Nurse-led rheumatology clinics have been proposed in patients with low disease activity or in remission.

    DESIGN: Randomized controlled trial.

    METHODS: A 12-month follow-up trial was conducted between October 2009 and August 2011, where 107 patients were randomized into two groups with a 6-month follow-up to a nurse-led rheumatology clinic based on person-centred care (intervention group; n = 53) or to a rheumatologist-led clinic (control group; n = 54). The hypothesis was that the nurse-led clinic outcomes would not be inferior to those obtained from a rheumatologist-led clinic at the 12-month follow-up. The primary outcome was disease activity measured by Disease Activity Score 28.

    RESULTS: A total of 47 patients in the intervention group and 50 in the control group completed the 12-month trial. The trial revealed no statistically significant differences between groups in mean change of Disease Activity Score 28, Visual Analogue Scales for pain, the Health Assessment Questionnaire, satisfaction with or confidence in obtaining rheumatology care.

    CONCLUSION: Patients with stable chronic inflammatory arthritis undergoing biological therapy could be monitored by a nurse-led rheumatology clinic without difference in outcome as measured by the Disease Activity Score 28. © 2013 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd.

  • 37.
    Larsson, Ingrid
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health promotion and disease prevention. Spenshult Research and Development Centre, Halmstad, Sweden.
    Fridlund, Bengt
    School of Health and Welfare, Jönköping University, Jönköping, Sweden .
    Arvidsson, Barbro
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Teleman, Annika
    Capio Movement Hospital, Halmstad, Sweden.
    Svedberg, Petra
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health promotion and disease prevention.
    Bergman, Stefan
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health promotion and disease prevention. Spenshult Research and Development Centre, Halmstad, Sweden & University of Gothenburg, Gothenburg, Sweden.
    A nurse-led rheumatology clinic versus rheumatologist-led clinic in monitoring of patients with chronic inflammatory arthritis undergoing biological therapy: a cost comparison study in a randomised controlled trial2015In: BMC Musculoskeletal Disorders, ISSN 1471-2474, E-ISSN 1471-2474, Vol. 16, article id 354Article in journal (Refereed)
    Abstract [en]

    Background: Recommendations for rheumatology nursing management of chronic inflammatory arthritis (CIA) from European League Against Rheumatism (EULAR) states that nurses should take part in the monitoring patients’ disease and therapy in order to achieve cost savings. The aim of the study was to compare the costs of rheumatology care between a nurse-led rheumatology clinic (NLC), based on person-centred care (PCC), versus a rheumatologist-led clinic (RLC), in monitoring of patients with CIA undergoing biological therapy.

    Methods: Patients with CIA undergoing biological therapy (n = 107) and a Disease Activity Score of 28 ≤ 3.2 were randomised to follow-up by either NLC or RLC. All patients met the rheumatologist at inclusion and after 12 months. In the intervention one of two annual monitoring visits in an RLC was replaced by a visit to an NLC. The primary outcome was total annual cost of rheumatology care.

    Results: A total of 97 patients completed the RCT at the 12 month follow-up. Replacing one of the two annual rheumatologist monitoring visits by a nurse-led monitoring visit, resulted in no additional contacts to the rheumatology clinic, but rather a decrease in the use of resources and a reduction of costs. The total annual rheumatology care costs including fixed monitoring, variable monitoring, rehabilitation, specialist consultations, radiography, and pharmacological therapy, generated €14107.7 per patient in the NLC compared with €16274.9 in the RCL (p = 0.004), giving a €2167.2 (13 %) lower annual cost for the NLC.

    Conclusions: Patients with CIA and low disease activity or in remission undergoing biological therapy can be monitored with a reduced resource use and at a lower annual cost by an NLC, based on PCC with no difference in clinical outcomes. This could free resources for more intensive monitoring of patients early in the disease or patients with high disease activity.

    Trial registration: The trial is registered as a clinical trial at the ClinicalTrials.gov (NCT01071447). Registration date: October 8, 2009.

    © 2015 Larsson et al.

  • 38.
    Larsson, Ingrid
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Jormfeldt, Henrika
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Nursing.
    Perspectives on power relations in human health and well-being2017In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 12, no Suppl. 2, article id 1358581Article in journal (Refereed)
  • 39.
    Larsson, Ingrid
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Nyman, Carin
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Svedberg, Petra
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Nygren, Jens M.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Carlsson, Ing-Marie
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Children and young people’s participation in developing interventions in health and well-being: a scoping review2018In: BMC Health Services Research, ISSN 1472-6963, E-ISSN 1472-6963, Vol. 18, no 507Article, review/survey (Refereed)
    Abstract [en]

    Background: Greater interest is being shown in participatory approaches, especially in research on interventions that concern children and young people'shealth and well-being. Although participatory approaches have user involvement in common, they differ in terms of the explicit guidance on how to actually involve and engage children and young people in health research. The aim of this scoping review was to systematically map recent research involving children and young people in the development of interventions targeting issues of health and well-being. Methods: An interpretative scoping literature review based on: a scientific literature search in (health and social science) databases, reference lists, a manual search in key journals and contact with existing networks was conducted. A total of 4458 references were identified through the literature search, of which 41 studies published between 2000 and 2017 were included in the review. The target population was children and young people under 25 years old. Level of participation was categorized according to Shier's Pathways to Participation Model. Results: The review showed that participatory approaches were most often used in the development of interventions in school settings and in community and healthcare settings and on issues concerning support in lifestyle or in managing illness or disease. The level of participation varied from children and young people taking part just as active informants, through stages of greater participation both in quantitative and qualitative terms, to children and youngpeople becoming an active agent involved as a co-researcher where the research process was shaped by views of a higher level of mutuality. Most of the studies were categorised at a medium level and only three studies were judged to involve the children and young people at the highest level. Conclusions: This scoping review showed that work remains in enabling children and young people to influence the development of interventions targeting health and well-being. In relation to level of sustainability in the interventions, it is relevant that goals, strategies and processes are formulated by those who can gain from the interventions. Participatory approaches aiming for a higher level of participation where children and young people work together with the researchers in partnerships are thus warranted. © 2018 The Author(s).

  • 40.
    Malm, Karina
    et al.
    Lund University, Lund, Sweden, Spenshult Research and Development Center, Oskarström, Sweden & Capio Movement, Halmstad, Sweden.
    Arvidsson, Barbro
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Andersson, Maria
    Lund University, Lund, Sweden & Spenshult Research and Development Center, Oskarström, Sweden.
    Bergman, Stefan
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health promotion and disease prevention. Lund University, Lund, Sweden & Spenshult Research and Development Center, Oskarström, Sweden.
    Bremander, Ann
    Halmstad University, School of Business, Engineering and Science, Biological and Environmental Systems (BLESS), Biomechanics and Biomedicine. Lund University, Lund, Sweden & Spenshult Research and Development Center, Oskarström, Sweden.
    Larsson, Ingrid
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health promotion and disease prevention. Spenshult Research and Development Center, Oskarström, Sweden.
    THU0628-HPR Lifestyle Habits Relates to Quality of Life in Patient with Longstanding Rheumatoid Arthritis2015In: Annals of the Rheumatic Diseases, ISSN 0003-4967, E-ISSN 1468-2060, Vol. 74, no Suppl. 2, p. 1318-1318Article in journal (Refereed)
    Abstract [en]

    Background: Fatigue, pain, stiffness, impaired muscle function and impaired physical function are some of the most pronounced symptoms in rheumatoid arthritis (RA) and these may be related to lifestyle habits such as physical activity, diet, smoking and alcohol.There is limited knowledge about how patient with longstanding RA understand their lifestyles habits in relation to their disease and quality of life.

    Objectives: To describe experiences of how lifestyle habits relate to quality of life in patients with longstanding RA.

    Methods: A qualitative study with a deductive content analysis design, including 17 patients from the Swedish BARFOT (Better Anti-Rheumatic FarmacoTherapy) cohort. BARFOT is a long time follow up study of early RA. Informants were strategically selected by gender (ten women and seven men), age (range 30-84 years), disease duration (8-23 years), function as measured by HAQ, and quality of life as measured by EQ5D. Semi-structured interviews focused on four lifestyle habits (main categories); Physical activity, Diet, Smoking, and Alcohol. The interviews were recorded, transcribed verbatim and coded into subcategories within each of the four main categories.

    Results: In patients with longstanding RA quality of life was related to the four given main categories (lifestyle habits). Each main category included two to three subcategories; (1) Physical activity means barrier, opportunities and well-being, (2) Diet means shame, well-being and social relationship, (3) Smoking means reward and fear, and (4) Alcohol means ambivalence and social relationship.

    Conclusions: In longstanding RA, lifestyle habits relates to quality of life through both positive and negative experiences. This has to be taken into account in clinical care for a better understanding of how patients conceive and adherer to advice on lifestyle.

    References: Scott DL, Wolfe F, Huizinga TW. Rheumatoid arthritis. Lancet. 2010;376(9746):1094-108.

    Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qualitative health research. 2005;15(9):1277-88.

  • 41.
    Malm, Karina
    et al.
    Lund University, Lund, Sweden; Spenshult Research and Development Center, Halmstad, Sweden; Rheumatology, Capio Movement, Halmstad, Sweden & FoU Spenshult, Halmstad, Sweden.
    Bergman, Stefan
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI). Lund University, Lund, Sweden; Spenshult Research and Development Center, Halmstad, Sweden & The Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Andersson, Maria LE
    Lund University, Lund, Sweden; Spenshult Research and Development Center, Halmstad, Sweden.
    Bremander, Ann
    Halmstad University, School of Business, Engineering and Science, The Rydberg Laboratory for Applied Sciences (RLAS). Lund University, Lund, Sweden; Spenshult Research and Development Center, Halmstad, Sweden.
    Larsson, Ingrid
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Nursing. Spenshult Research and Development Center, Halmstad, Sweden.
    Quality of life in patients with established rheumatoid arthritis: A phenomenographic study2017In: SAGE Open Medicine, E-ISSN 2050-3121, Vol. 5, article id 2050312117713647Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Patients with rheumatoid arthritis perceive reduced quality of life in several domains, such as physical health, level of independence, environment and personal beliefs, compared with the healthy population. There is an increasing interest in quality of life in clinical and medical interventions. Few studies have explored patients' individual conceptions of quality of life, and interviews can thus complement quantitative studies. There is a need for a deeper understanding of the patients' experiences of quality of life, with regard to living with a long-term condition such as rheumatoid arthritis. The aim of this study was to explore the variation of ways in which patients with established rheumatoid arthritis understand the concept of quality of life.

    METHODS: The study had a qualitative design with a phenomenographic approach, which was used to describe variations in how individuals experience their quality of life. The study is based on interviews with 22 patients with established rheumatoid arthritis enrolled in the BARFOT (better anti-rheumatic pharmacotherapy) study.

    RESULTS: The concept of quality of life could be understood in three different ways: (1) independence in terms of physical functioning and personal finances, (2) empowerment in how to manage life and (3) participation as an experience of belonging in a social context.

    CONCLUSION: The different conceptions of quality of life reflect the complexity in the concept, including physical, psychological and social aspects. This complexity is important to have in mind when health professionals support patients in enhancing their quality of life. © The Author(s) 2017

  • 42.
    Malm, Karina
    et al.
    R&D-centre, Spenshult, Halmstad, Sweden & Capio Movement, Halmstad, Sweden.
    Bergman, Stefan
    R&D-centre, Spenshult, Halmstad, Sweden & The Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Bremander, Ann
    R&D-centre, Spenshult, Halmstad, Sweden & Department of Clinical Sciences, Section of Rheumatology, Lund, Sweden.
    Larsson, Ingrid
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI). R&D-centre, Spenshult, Halmstad, Sweden.
    Andersson, Maria L.
    R&D-centre, Spenshult, Halmstad, Sweden & Department of Clinical Sciences, Section of Rheumatology, Lund, Sweden.
    Discussions of lifestyle habits as an integral part of care management in patients with established rheumatoid arthritis2018In: Annals of the Rheumatic Diseases, ISSN 0003-4967, E-ISSN 1468-2060, Vol. 77, p. 1817-1817, article id FRI10741-HPRArticle in journal (Refereed)
    Abstract [en]

    Background: Rheumatoid arthritis (RA) is associated with an increased risk of developing comorbidities which are known to be associated with lifestyle-related habits; such as having a sedentary lifestyle, having an unhealthy diet, smoking, and over-consumption of alcohol. In 2010, the European League Against Rheumatism (EULAR) published general guidelines on risk management in patients with RA, with an update 2017 (1,2) in which health professionals are encouraged to prioritize discussions with patients regarding their lifestyle and it is of interest to study the extent to which these discussions actually occur.

    Objectives: To study if lifestyle habits; physical activity, diet, smoking and alcohol had been discussed with patients having RA during health care visits.

    Methods: A cross-sectional postal survey in 2017 included 1542 eligible patients from the BARFOT (Better Anti-Rheumatic Pharmacotherapy) study. All patients received a questionnaire including lifestyle habits (physical activity, diet, smoking, and alcohol), and whether these habits had been discussed during health care visits. There was also a question regarding if they would have wanted such a discussion.

    Results: 1,061 patients (68%) responded to the survey (mean age 67 years (SD 13); 73% women). Physical activity was discussed with 49% of the patients (figure 1A). Those who reported that they were active on a health-enhancing level were more likely to have discussed physical activity with health professionals. Diet had been discussed with 23% of the patients (figure 1B). Patients who reported a non-traditional mixed diet were more likely to have discussed diet. Smoking was discussed with 25% of the patients (figure 1C). Current smokers had more often discussed smoking habits with healthcare professionals compared with never smokers (32% vs. 17%; p=0.000). Alcohol had been discussed with 17% of the patients (figure 1D). Of the patients with hazardous drinking habits, 77% had not had a discussion regarding alcohol.

  • 43.
    Malm, Karina
    et al.
    Spenshult Research and Development Center, Oskarström, Sweden & Rheumatology, Capio Movement, Halmstad, Sweden & Department of Clinical Sciences, Section of Rheumatology, Lund University, Lund, Sweden.
    Bremander, Ann
    Halmstad University, School of Business, Engineering and Science, Biological and Environmental Systems (BLESS). Spenshult Research and Development Center, Oskarström, Sweden & Department of Clinical Sciences, Section of Rheumatology, Lund University, Lund, Sweden.
    Andersson, Maria
    Spenshult Research and Development Center, Oskarström, Sweden & Department of Clinical Sciences, Section of Rheumatology, Lund University, Lund, Sweden.
    Bergman, Stefan
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI). Spenshult Research and Development Center, Oskarström, Sweden & Department of Clinical Sciences, Section of Rheumatology, Lund University, Lund, Sweden & Primary Health Care Unit, Department of Public Health and Community Medicine, Institute of Medicine, The Sahlgrenska Academy, Gothenburg, Sweden.
    Larsson, Ingrid
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI). Spenshult Research and Development Center, Oskarström, Sweden.
    Quality of Life in Patient with Established Rheumatoid Arthritis: A Qualitative Study2016In: Annals of the Rheumatic Diseases, ISSN 0003-4967, E-ISSN 1468-2060, Vol. 75, no Suppl 2, article id 1308Article in journal (Refereed)
    Abstract [en]

    Background: Fatigue, pain, stiffness and impaired physical function are some of the most pronounced symptoms in rheumatoid arthritis (RA) that may affect quality of life. Quality of life is an individual experience composed of a wide range of factors, including physical health, psychological state, level of independence, social relationships, and the patients' relationship to salient features of their environment. There is a need to describe and assess quality of life in chronic diseases like established RA. Previous research has mainly focused on disease-specific instruments for assessing quality of life. A deeper understanding of patients' experience of quality of life in established RA is important in both clinical research and daily clinical practice.

    Objectives: To describe variations in patients' experiences of quality of life in established RA.

    Methods: The study had a qualitative design with a phenomenographic approach, including 22 interviews with patients from the Swedish BARFOT (Better Anti-Rheumatic FarmacoTherapy) cohort, BARFOT, a long time follow up study of early RA. Patients were strategically selected by gender (14 women and 8 men), age (30 to 84 years old), disease duration (8–23 years), function as measured by HAQ (0–1.38), and quality of life as measured by EQ5D (0.52–1.00). The interviews were recorded, transcribed verbatim and coded into categories.

    Results: Four categories emerged from the patients' experiences of quality of life in established RA: well-being, freedom, empowerment, and participation. Quality of life as well-being meant pleasure and being physical active. Quality of life as freedom meant dependence or independence in the ability to manage daily life activities. Quality of life as empowerment meant different coping strategies, such as positive thinking and resources to manage fatigue, pain and physical function. Quality of life as participation meant togetherness in different contexts with other people.

    Conclusions: Quality of life in established RA could be understood by the patients in different ways. The patients experienced quality of life as well-being, freedom, empowerment, and participation. This is important knowledge when evaluating the concept of quality of life in RA research, and for health professionals when promoting quality of life in patients with RA.

  • 44.
    Malm, Karina
    et al.
    Department of Clinical Sciences, Section of Rheumatology, Lund University, Lund, Sweden & Spenshult Research and Development Center, Halmstad, Sweden & Rheumatology, Capio Movement, Halmstad, Sweden.
    Bremander, Ann
    Halmstad University, School of Business, Engineering and Science, Biological and Environmental Systems (BLESS). Department of Clinical Sciences, Section of Rheumatology, Lund University, Lund, Sweden & Spenshult Research and Development Center, Halmstad, Sweden .
    Arvidsson, Barbro
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Andersson, Maria L E
    Department of Clinical Sciences, Section of Rheumatology, Lund University, Lund, Sweden & Spenshult Research and Development Center, Halmstad, Sweden.
    Bergman, Stefan
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI). Department of Clinical Sciences, Section of Rheumatology, Lund University, Lund, Sweden & Spenshult Research and Development Center, Halmstad, Sweden & Primary Health Care Unit, Department of Public Health and Community Medicine, Institute of Medicine, The Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Larsson, Ingrid
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    The influence of lifestyle habits on quality of life in patients with established rheumatoid arthritis: A constant balancing between ideality and reality2016In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 11, article id 30534Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: Rheumatoid arthritis (RA) is a chronic, inflammatory, and systemic disease with symptoms that limit activities and affect quality of life. RA is associated with an increased risk of developing comorbidities, some of which are also known to be associated with lifestyle habits such as physical activity, diet, smoking, and alcohol. There has been an augmented focus on the implementation and maintenance of healthy lifestyle habits even for patients with RA in the past decade, but little is known about the link between patients' experiences of lifestyle habits and quality of life. The aim of the study was thus to describe and explore how patients with established RA experience the influence of lifestyle habits on quality of life.

    METHODS: The study had a descriptive and explorative design, based on qualitative content analysis. Strategic sampling was used in order to achieve variations in experiences. Twenty-two patients with RA (14 women and 8 men) from 30 to 84 years old, with a disease duration ranging from 8 to 23 years, were interviewed.

    RESULTS: The analysis of the influence of lifestyle habits on quality of life resulted in the theme balancing between ideality and reality. Three categories emerged about how lifestyle habits influenced quality of life by limitations (including insufficiency and adaptation), self-regulation (including guilt and motivation), and companionship (including belonging and pleasure).

    CONCLUSIONS: Quality of life for patients with established RA was influenced by the balance between ideality and reality in the lifestyle habits: physical activity, diet, smoking, and alcohol. This is important new knowledge for health professionals when discussing lifestyle habits with RA patients.

  • 45.
    Teleman, Britta
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Karsson, Caroline
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Svedberg, Petra
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Vinblad, Elin
    The Child and Youth Rehabilitation Centre, Region Skåne, Sweden.
    Larsson, Ingrid
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Nygren, Jens M.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Co-construction of child personas in the development of a digital communication support system for increased participation in pediatric habilitation2019In: Developmental Medicine & Child Neurology, ISSN 0012-1622, E-ISSN 1469-8749, Vol. 61, no S2, p. 17-17Article in journal (Refereed)
    Abstract [en]

    Introduction: Digital communication support systems have great potential to facilitate the provision of child-centered care where children and young people are allowed and enabled to participate in planning and decision-making in their own habilitation. The aim of this study was to co-construct child personas together with children and young adults from pediatric habilitation for the design of a digital communication support system.

    Patients and methods: The child, parent and practitioner perspectives on goals, needs and behaviours in relation to participation in pediatric habilitation were characterized based on interviews with 20 children (6-17 years old) and 8 young people (18-30 years old) with intellectual disabilities, physical disabilities or autism spectrum disorders, 17 parents (aged 31-62 years) and 10 practitioners. Data were interpreted and explained together with children from the interviews (n=14) in two explorative design workshops and a validation workshop.

    Results: We present findings and insights on how to co-construct child personas in the context of pediatric habilitation. The work resulted in three personas with different priorities that model the behaviors, attitudes, and goals of three user archetypes tailored for developing digital communication support systems in this particular use context.

    Conclusion: By applying our progressive steps of data collection and analysis, we arrive at authentic child-personas that are now used to design and develop a digital communication support system for the particular goals, needs and behaviors of children in pediatric habilitation.

  • 46.
    Van der Elst, Kristien
    et al.
    Department of Rheumatology, University Hospitals Leuven, Leuven, Belgium & Skeletal Biology and Engineering Research Centre, Department of Development and Regeneration, KU Leuven–University of Leuven, Leuven, Belgium.
    Bremander, Ann
    Halmstad University, School of Business, Engineering and Science, The Rydberg Laboratory for Applied Sciences (RLAS). Department of Clinical Sciences, Section of Rheumatology, Lund University, Lund, Sweden & Research and Development Centre, Spenshult, Halmstad, Sweden.
    De Groef, An
    Department of Rehabilitation Sciences, KU Leuven – University of Leuven, Leuven, Belgium.
    Larsson, Ingrid
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Mathijssen, Elke G.E.
    Department of Rheumatology, Sint Maartenskliniek, Nijmegen, The Netherlands.
    Vriezekolk, Johanna E.
    Department of Rheumatology, Sint Maartenskliniek, Nijmegen, The Netherlands.
    Westhovens, Rene
    Department of Rheumatology, University Hospitals Leuven, Leuven, Belgium & Skeletal Biology and Engineering Research Centre, Department of Development and Regeneration, KU Leuven–University of Leuven, Leuven, Belgium.
    van Eijk-Hustings, Yvonne J.L.
    Department of Clinical Epidemiology and Medical Technology Assessment, Maastricht University Medical Centre, Maastricht, The Netherlands & Department of Rheumatology, Maastricht University Medical Centre, Maastricht, The Netherlands.
    European Qualitative research project on Patient-preferred outcomes in Early Rheumatoid Arthritis (EQPERA): rationale, design and methods of a multinational, multicentre, multilingual, longitudinal qualitative study2019In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 9, no 3, article id 023606Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: Including the patient perspective is important to achieve optimal outcomes in the treatment of rheumatoid arthritis (RA). Ample qualitative studies exist on patient outcomes in RA. A Belgian study recently unravelled what matters most to patients throughout the overwhelming and rapidly evolving early stage of RA. The present study, European Qualitative research project on Patient-preferred outcomes in Early Rheumatoid Arthritis (EQPERA) was created to contribute to a more universal understanding of patient-preferred health and treatment outcomes by integrating the perspectives of patients with early RA from three European countries.

    METHODS AND ANALYSIS: In EQPERA, a qualitative, explorative, longitudinal study will be implemented in The Netherlands and Sweden, parallel to the methods applied in the previously conducted Belgian study. In each country, a purposive sample of patients with early RA will be individually interviewed 3-6 months after start of the initial RA treatment and subsequently, the same participants will be invited to take part in a focus group 12-18 months after RA treatment initiation. Data collection and analysis will be independently conducted by the local research teams in their native language. A meta-analysis of the local findings will be performed to explore and describe similarities, differences and patterns across countries.

    ETHICS AND DISSEMINATION: Ethics approval was granted by the responsible local ethics committees. EQPERA follows the recommendations of the Declaration of Helsinki. Two main papers are foreseen (apart from the data reporting on the local findings) for peer-reviewed publication.

    © Author(s) (or their employer(s)) 2019.

  • 47.
    Van der Elst, Kristien
    et al.
    University Hospitals Leuven, Leuven, Belgium.
    Bremander, Ann
    Lund University, Lund, Sweden.
    De Groef, Ann
    University Hospitals Leuven, Leuven, Belgium.
    Grønning, Kjerstin
    Norwegian University of Science and Technology, Trondheim, Norway.
    Larsson, Ingrid
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Nursing. Spenshult Research and Development Center, Halmstad, Sweden.
    Mathijssen, Elke
    Sint Maartenskliniek, Nijmegen, Netherlands.
    Vriezekolk, Joke
    Sint Maartenskliniek, Nijmegen, Netherlands.
    Westhovens, René
    University Hospitals Leuven, Leuven, Belgium.
    van Eijk-Hustings, Yvonne
    Maastricht University Medical Center, Maastricht, Netherlands.
    European Qualitative Research Project on Patient-preferred Outcomes in Early Rheumatoid Arthritis (EQPERA): Rationale, Design and Methods of a Multi-country, Multi-center, Multi-language, Longitudinal Qualitative Study2017In: European Congress of Qualitative Inquiry: Abstracts, 2017, p. 117-117Conference paper (Refereed)
    Abstract [en]

    Background: A successful medical outcome is no guarantee for patient perception of treatment success. Unraveling the patient’s perspective on outcome preferences is therefore crucial to deliver patient-centered, high-quality chronic illness care. Furthermore, the earliest stage of a chronic disease, such as in Rheumatoid Arthritis (RA), can be considered as a critical phase in the patient pathway for achieving optimal long-term outcomes. A Belgian qualitative study provided a first glimpse on what matters most to patients with recently diagnosed RA (1). However, there was a need for an international data set to better understand this complex phenomenon being studied, and to investigate whether the Belgian findings could be transferred to contexts with different national healthcare systems, practices and values. To this end, EQPERA –European Qualitative research collaboration on Patient-preferred outcomes in Early Rheumatoid Arthritis– was founded.

    Objectives: The overall research objective of EQPERA is to unravel longitudinally preferences for treatment and health outcomes among patients with early RA across Belgium, the Netherlands, Sweden and Norway, placing findings in a context broader than Belgium. Furthermore, EQPERA aims to add to qualitative methodology research.

    Methods: EQPERA applies a qualitative, explorative, longitudinal research design, which was developed in collaboration with patient research partners and the patient perspective in mind. In each country, a purposive sample of patients with early RA will be individually interviewed between 3-6 months after start of the initial RA treatment and subsequently, the same participants will be invited to take part in a focus group about 1 year after RA treatment initiation. Interviews will be analyzed using the constant comparison method as described in Qualitative Analysis Guide of Leuven. The longitudinal analysis will be guided by Saldaña’s steps for analyzing change through time in longitudinal qualitative research. To study the multinational findings, we will carry out a meta-synthesis of all locally gathered and interpreted data. The local research teams will independently employ a qualitative study, while the project leader will monitor the research as it unfolds and evolves. Moreover, to support consistency in data collection and the inter-coder reliability across countries, we will implement a detailed research protocol, a structured cultural translation and validation process of the interview guides, data collection templates, a quality assurance reporting tool and specific training sessions.

    Added value: Our innovative, qualitative, longitudinal research design goes beyond the abilities of the frequently used cross-sectional designs in qualitative research. A European research context allows to uncover subtle cultural differences in patient-preferred outcomes across more or less similar organized countries. This project is thus a first step in gathering widely applicable findings in a research area where evidence-based knowledge is lacking, yet, highly needed to tailor care processes and optimize patient outcomes. Various data management strategies are applied to ensure quality and trustworthiness of our findings, and to promote a smooth European collaboration.

  • 48.
    Van der Elst, Kristien
    et al.
    University Hospitals Leuven, Leuven, Belgium.
    Bremander, Ann
    Spenshult Research and Development Center, Spenshult Hospital, Halmstad, Sweden.
    De Groef, Ann
    University Hospitals Leuven, Leuven, Belgium.
    Larsson, Ingrid
    Spenshult Research and Development Center, Spenshult Hospital, Halmstad, Sweden.
    Mathijssen, Elke
    Sint-Maartenskliniek, Nijmegen, Netherlands.
    Vriezekolk, Joke
    Sint-Maartenskliniek, Nijmegen, Netherlands.
    Westhovens, Renee
    University Hospitals Leuven, Leuven, Belgium.
    van Eijk-Hustings, Yvonne
    Maastricht University Medical Center, Maastricht, Netherlands.
    European Qualitative Research Project on Patient-preferred Outcomes in Early Rheumatoid Arthritis (EQPERA): Rationale, Design and Methods of a Multi-country, Multi-center, Multi-language, Longitudinal Qualitative Study2017In: Annals of the Rheumatic Diseases, ISSN 0003-4967, E-ISSN 1468-2060, Vol. 76, no Suppl. 2, p. 1488-1489Article in journal (Refereed)
    Abstract [en]

    Background: Ample studies exist on outcome assessment from the patient perspective in Rheumatoid Arthritis (RA), but little is known about health and treatment preferences of recently diagnosed patients, and how these evolve over time. A Belgian qualitative study has set the scene (1), but knowledge on cross-cultural nuances in patient-preferred outcomes is lacking. To this end, EQPERA – European Qualitative research collaboration on Patient-preferred outcomes in Early Rheumatoid Arthritis– was founded.

    Objectives: EQPERA aims to unravel longitudinally preferences for treatment and health outcomes among patients with early RA across Belgium, the Netherlands and Sweden. To yield sound results, specific preparations for this cross-country qualitative study are reported here.

    Methods: Several steps have been undertaken to ensure trustworthiness of findings and consistency across countries in sampling, interviewing, analysis and project management: a detailed research protocol has been written; the interview guides have been translated following a structured forward-backward linguistic validation process; templates for data collection and a quality assurance reporting tool have been developed; and local staff has been trained and supervised by the project leader in implementing the study protocol. Each country will document changes with sufficient detail in their research logbook.

    Results: EQPERA will be a qualitative, explorative, longitudinal study with active involvement of patient researchers. In each country, a purposive sample of patients with early RA will be individually interviewed 3–6 months after start of the initial RA treatment and subsequently, the same participants will be invited back to take part in a focus group 12–18 months after RA treatment initiation. Data collection and analysis will be independently conducted by the local research teams in their native language. The local teams will analyze their interview data using the constant comparison method as detailed in Qualitative analysis guide of Leuven, after which Saldana's guiding questions will be adopted for analyzing change over time. Afterwards, a meta-synthesis of all locally gathered and interpreted data will be conducted to explore and describe patterns, similarities and differences across countries.

    Conclusions: This European project is a first step in gathering contextual findings on patient-preferred outcomes in early RA. Such knowledge is of crucial importance for tailoring therapeutic approaches in a timely and meaningful way. Our innovative, qualitative, longitudinal research design goes beyond the abilities of the frequently used cross-sectional designs in qualitative research. Large, multi-national qualitative projects are scarce in rheumatology research, thus applied data management and quality assurance strategies could be of interest to other researchers. © 2017, BMJ Publishing Group Limited

  • 49.
    Vinblad, Elin
    et al.
    Child and Youth Rehabilitation Services, Region Skåne, Kristianstad, Sweden.
    Larsson, Ingrid
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Lönn, Maria
    Region Halland, Halmstad, Sweden.
    Olsson, Emma
    Falkenbergs Municipality, Falkenberg, Sweden.
    Nygren, Jens M.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Svedberg, Petra
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Development of a Digital Decision Support Tool to Aid Participation of Children With Disabilities in Pediatric Rehabilitation Services: Explorative Qualitative Study2019In: JMIR Formative Research, Vol. 3, no 4, article id 14493Article in journal (Refereed)
    Abstract [en]

    Background: Building a health care system in accordance with the rule of law requires child-centered care, where children and young people, regardless of ability, are allowed to participate in visits with their health care professionals. As part of an overall project focusing on developing and implementing a digital decision support tool to increase the participation of children with disabilities in pediatric rehabilitation, this study brings new knowledge as to how this specific patient group views participation.

    Objective: The aim of this formative study was to explore the experiences of children and young people with disabilities concerning increasing their participation in the pediatric rehabilitation services.

    Methods: The formative study had an explorative design, based on a latent qualitative content analysis with an inductive approach. Interviews were conducted with 20 children (6-17 years) and 8 young people (19-30 years) with disabilities about their experiences of participation in pediatric rehabilitation services.

    Results: A total of 3 categories emerged reflecting the participants’ possibilities of participation in the pediatric rehabilitation services: to feel involved, to feel independent, and to work in partnership. To feel involved meant being listened to and being connected, to feel independent meant being admitted and being enabled, and to work in partnership meant being supported and being able to entrust others with the decision making. With the overall theme moving toward empowerment of children in pediatric rehabilitation, a true feeling of participation can be experienced.

    Conclusions: The views of children and young people with disabilities are that children should be given the prerequisites for empowerment by being allowed to feel involved and independent as well as to work in partnership to experience true participation in the pediatric rehabilitation services. This finding is essential in the design of a digital decision support tool based on the children’s needs and perspectives. © Elin Vinblad, Ingrid Larsson, Maria Lönn, Emma Olsson, Jens M Nygren, Petra Svedberg. Originally published in JMIR Formative Research (http://formative.jmir.org), 02.10.2019

  • 50.
    Vinblad, Elin
    et al.
    The Child and Youth Rehabilitation Service, Region Skåne, Kristianstad och Hässleholm, Sweden.
    Nygren, Jens M.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Karsson, Caroline
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Teleman, Britta
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Svedberg, Petra
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Larsson, Ingrid
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Parents’ expectations of a digital decision support tool for children with disabilities in pediatric rehabilitation – a qualitative study2019In: 31st EACD Conference, 2019Conference paper (Refereed)
    Abstract [en]

    Introduction: Children with disabilities usually have an extensive need for support from their parents in communication with healthcare professionals in pediatric rehabilitation. The aim of this study was to explore parents’ expectations of a digital communication and decision making tool for children with disabilities in pediatric rehabilitation.

    Patients and methods: The study had a descriptive design with a qualitative content analysis approach. Interviews were conducted with 17 parents (aged 31-62 years, 13 mothers and 4 fathers) to children with intellectual disabilities, physical disabilities or autism spectrum disorders. Results: Three categories emerged reflecting parents’ expectation of how to increase participation in rehabilitation by using a digital communication and decision tool: 1) the children will become more confident with a higher self-esteem if they easily can express themselves and their inner thoughts 2) the children will respond more honestly without considering what their parents or healthcare professionals expect to hear 3) the children will become more independent if they have a possibility to be involved and understand decisions in their own rehabilitation.

    Conclusion: The parents highlighted the importance of self-esteem as prerequisites to increase participation in rehabilitation for their children with disabilities, which they believed could be achieved by using a digital tool. A digital communication and decision making tool would strengthen the children’s voices in their own rehabilitation. This result constitutes therefore a basis in the development of a forthcoming digital communication and decision making tool, with the main objective to increase participation, for children with disabilities.

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