| 1. |
- Areskoug Josefsson, Kristina, 1973-, et al.
(author)
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Co-creation of a working model to improve sexual health for persons living with rheumatological diseases
- 2020
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In: Open Journal of Rheumatology and Autoimmune Diseases. - : Scientific Research Publishing. - 2163-9914 .- 2164-005X. ; 10:3, s. 109-124
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Journal article (peer-reviewed)abstract
- Background: Sexual health needs are insufficiently met for persons living with rheumatological diseases and it is necessary to create better ways to meet these needs. Objective: To co-create a working model to improve sexual health for persons living with rheumatological diseases, that can be used by rheumatological teams in regular rheumatology practice. Design: This study applied a co-creation design with three key features: 1) it took a systems perspective with emergent multiple interactive entities; 2) the research process was viewed as a creative endeavour with strong links to design, while human imagination and the individual experience of patient and staff were at the core of the creative design effort; 3) the process of the co-creative efforts was as important as the generated product. Results: A model defining the role of the patient, the professionals, and the team in optimizing sexual health for persons living with rheumatological diseases was co-created. The model can be seen as a practice guideline, which includes the support needed from and to each participant in the process of promoting sexual health, while being within the professional scope of the professionals’ knowledge and capacity, and in line with the needs of the persons living with rheumatological diseases. Discussion and Conclusions: The co-creative work process identified crucial factors in promoting sexual health, resulting in a useful model for patients, professionals and teams. Co-creation was experienced to be a useful research design to improve rheumatological care, through valuing and using the competence of all research members equally.
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| 2. |
- Bergström, Maria, 1983-, et al.
(author)
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A dyadic exploration of support in everyday life of persons with RA and their significant others
- 2023
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In: Scandinavian Journal of Occupational Therapy. - : Taylor & Francis Ltd. - 1103-8128 .- 1651-2014. ; 30:5, s. 616-627
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Journal article (peer-reviewed)abstract
- Background Support from significant others is important for participation in everyday life for persons with rheumatoid arthritis (RA). Meanwhile, significant others also experience limitations. Aims To explore how support is expressed by persons with RA and significant others, and how support relates to participation in everyday life of persons with RA. Material and methods Sixteen persons with RA and their significant others participated in individual semi-structured interviews. The material was analyzed using dyadic analysis. Results Persons with RA and significant others reported that RA and support had become natural parts of everyday life, especially emotional support. The reciprocal dynamics of support were also expressed as imperative. Also, support from people outside of the dyads and well-functioning communication facilitated everyday life. Conclusions Significant others and the support they give are prominent factors and facilitators in everyday life of persons with RA. Concurrently, the support persons with RA provide is important, along with support from outside of the dyads. Significance The results indicate that the interaction between persons with RA and the social environment is central to gain insight into how support should be provided for optimal participation in everyday life. Significant others can preferably be more involved in the rehabilitation process.
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| 3. |
- Bergström, Maria, 1983-
(author)
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Participation and support in everyday life over a decade : perspectives of persons with rheumatoid arthritis and their significant others
- 2023
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Doctoral thesis (other academic/artistic)abstract
- Introduction: The treatment of rheumatoid arthritis (RA) has evolved over recent decades. Today, many previous limitations related to, for example, joint damage have become rare, and persons with RA can often continue to work and engage in different aspects of everyday life. Nonetheless, persons with RA still report restrictions in everyday life, as they can be negatively impacted by symptoms like pain, stiffness and fatigue. As these symptoms might be invisible to others, the significant others of persons with RA can find it difficult to comprehend the effect of the disease. As a consequence, both the person with RA and the significant other may be affected, despite today’s effective treatment.As participation is a central concept within healthcare, it is also a prominent factor within rehabilitation and its goals. Despite access to contemporary treatment during the whole disease course, persons with RA still report participation restrictions. Since RA is a chronic disease, these remaining restrictions are of particular interest from a longitudinal perspective. However, support from the social environment, such as significant others, has the possibility to positively influence participation in everyday life. Therefore, it is essential to explore the influence of significant others and their support with the goal of enhanced participation in the everyday life of persons with RA, from a longitudinal perspective.Aim: The general aim of this thesis is to explore participation in the everyday life of persons with RA over a decade, and in relation to this investigate the influence of significant others and their support.Methods: This thesis consists of four studies that used different methodological approaches: qualitative, quantitative and mixed methods.Study I was a qualitative study where 59 persons with RA participated in semi-structured interviews approximately three years after diagnosis. Questions covered experiences in everyday life and participation. The material was analysed through content analysis.In Study II, longitudinal data from 274 persons with RA were analysed regarding disease activity (assessed by DAS28), grip force (assessed by Grippit), pain intensity (VAS mm) and activity limitations (assessed by HAQ). The data were collected at inclusion, year one and year two after diagnosis. Data related to sickness absence were also obtained, as well as self-assessed perceptions of experienced support. Through regression analyses, associations between disease-related variables and sickness absence were investigated, with support as a moderator.The data in Study III comprise semi-structured individual interviews with 16 persons with RA and their significant others, conducted approximately a decade after diagnosis. The interview guide was developed with Study I in mind and included similar topics, with the addition of support. This material was analysed using dyadic analysis, where a person with RA and the significant other comprised a dyad.Finally, in Study IV, a convergent mixed methods approach was used. Longitudinal data regarding disease-related variables (same as Study II) were collected during the first decade after diagnosis and analysed through linear mixed models. The qualitative material consisted of individual interviews conducted three and ten years after diagnosis and analysed by directed content analysis. The quantitative and qualitative results were integrated in accordance with the chosen method.Results: Significant others of persons with RA could encompass both facilitators and hinders to participation in the everyday life of persons with RA. Through the provision of support and helpful attitudes towards needed adaptations, they had a positive influence on participation in the everyday life of persons with RA. This was a continuous process since the persons with RA were still affected by the disease a decade after diagnosis, and adaptations by the significant others might also still be needed.Experiences of RA were found to differ between men and women over the first decade after diagnosis. Moreover, through a mixed methods design, discrepancies were found between the persons’ own descriptions in interviews and the quantitative results. For instance, women expressed issues related to grip force and disease activity in the interviews, but these issues were not detected in the same way in the quantitative results. These discrepancies were additionally not seen in men; however, both men and women still showed signs of disability a decade after RA diagnosis. Nevertheless, over time, the persons with RA and their significant others had learned to live with the disease and there was a sense of togetherness in everyday life with RA. Namely, they approached the disease together as a unit.Support was identified as a positive aspect that facilitated everyday life. It entailed both the support between the person with RA and the significant other, as well as the support from others outside of the dyad. Support could also come in different forms. For example, the person with RA could receive emotional support from a significant other, or healthcare professionals (HCPs) could provide informational support to either or both of the parties. In connection to the latter, a continuous need for knowledge was identified in both the persons with RA and the significant others. Support from significant others also proved to have an impact on work life specifically, as more perceived support was associated with an increased risk of sickness absence.Conclusively, significant others and their support can influence participation in the everyday life of persons with RA, and this influence can be facilitated through positive attitudes and different types of support during the first decade after diagnosis.Conclusions: Significant others are essential providers of support as facilitators for participation in the everyday life of persons with RA, including many years after diagnosis. However, they must also be attentive towards the further need for adaptations and possible emotional burden in the persons with RA. It is also important for significant others to find a balance between overprotecting and contributing to independence.The significant others in their turn might need support in understanding the impact of the disease. In this case, HCPs should be providers of support to both persons with RA and their significant others and consult with both of them as a unit in the rehabilitation process. This also exemplifies the need for support from outside the dyads of persons with RA and their significant others.Support is requested both at an early stage and throughout the disease course. Different types of support from significant others can therefore preferably be part of the rehabilitation process as a way to enhance participation in the everyday life of persons with RA.
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| 4. |
- Bergström, Maria, et al.
(author)
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Significant others' influence on participation in everyday life : the perspectives of persons with early diagnosed rheumatoid arthritis
- 2020
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In: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 42:3, s. 385-393
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Journal article (peer-reviewed)abstract
- Purpose: To describe the meaning of significant others in relation to participation in everyday life of persons with early diagnosed rheumatoid arthritis (RA). Materials and methods: Fifty-nine persons participated in this interview study. Inclusion criteria were three years’ experience of diagnosis and being of working age. Semi-structured interviews were conducted using critical incident technique (CIT), and the material was analysed using content analysis. Results: Four categories were revealed: (1) My early RA causes activity adaptations for us all, referring to the person and significant others modifying activities. (2) Making the significant others balance between shortfalls and participation, where the participants distinguished between needing help and feeling involved in activities. (3) Physical interactions with significant others, referring to both the problematic and manageable impact RA could have on body contact. (4) Emotions in relation to activities with others, where participants described feelings of failing others, and anxiety about future activities. Conclusions: For persons with early diagnosed RA, significant others can be both hindering and facilitating for participation in everyday life. As a clinical implication, it is valuable to identify how significant others can be involved in the rehabilitation process, to enhance participation in everyday life early in the disease process.Implications for rehabilitation Significant others of persons with rheumatoid arthritis can facilitate as well as hinder participation in everyday life, even early in the disease process. It is important to include the significant others in the rehabilitation process of persons with early diagnosed rheumatoid arthritis. It is of great importance to identify when and how significant others can be facilitators of participation in everyday life for persons with early rheumatoid arthritis. To make it easier for significant others to facilitate participation, there is a need for the healthcare system to explore ways to support significant others with easily accessible information about early rheumatoid arthritis.
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| 5. |
- Bergström, Maria, et al.
(author)
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The role of support from significant others in the association between disease-related factors and sickness absence in early rheumatoid arthritis : a longitudinal study
- 2021
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In: Scandinavian Journal of Rheumatology. - : TAYLOR & FRANCIS LTD. - 0300-9742 .- 1502-7732. ; 50:6, s. 427-434
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Journal article (peer-reviewed)abstract
- Objective: The aim of this study was to analyse how support from significant others affects the associations between disease-related variables and sickness absence during the first 2 years after rheumatoid arthritis (RA) diagnosis. Method: Data from 274 people with RA (73% women) of working age (18-63 years) were retrieved from the Swedish early RA cohort TIRA-2. These data concerned disease-related variables (disease activity, activity limitations, pain intensity, and grip force), sickness absence, and perceived support from significant others. Associations of disease-related variables with sickness absence and how these associations were moderated by support from significant others were analysed using zero-inflated negative binomial regression. Results: During the 2 years after diagnosis, higher disease activity was significantly associated with increased odds of sickness absence, a connection strengthened by perceived support from family during the first year. More perceived support was also directly and significantly associated with increased odds of sickness absence during the first year. Conclusions: Support from significant others is related to sickness absence in RA, specifically during the first year after diagnosis. Although patients report high levels of support from significant others, this does not necessarily lead to more positive work outcomes. Therefore, it is important to consider other aspects of support that might influence work outcomes, e.g. type and quality of support. Future research should investigate these forms of support, and when significant others should be encouraged to support in the rehabilitation process to increase the chances of people with RA having a well-functioning and sustainable work life.
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| 6. |
- Björk, Mathilda, et al.
(author)
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Inflammatory Arthritis and the Effect of Physical Activity on Quality of Life and Self-reported Function : A Systematic Review and Meta-analysis
- 2022
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In: Arthritis care & research. - : John Wiley & Sons. - 2151-464X .- 2151-4658. ; 74:1, s. 31-43
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Research review (peer-reviewed)abstract
- OBJECTIVE: Although physical activity (PA) is an evidence-based intervention that reduces disease-related symptoms and comorbidity in rheumatoid arthritis (RA), PA's effect on self-reported function and Quality of Life (QoL) has not been analyzed. This study synthesizes the evidence for the effectiveness of PA on QoL and self-reported function in adults with RA, spondyloarthritis (SpA), and psoriatic arthritis (PsA).METHODS: The databases PubMed, Embase, CINAHL, and Cochrane Central Register of Controlled Trials (CENTRAL) were searched to identify relevant randomized controlled trials (RCTs). Screening, risk of bias assessment (using RoB 2.0 tool), and data extraction were independently performed by two or more of the authors. The meta-analyses were conducted with a random-effects model.RESULTS: The systematic review included 55 RCTs and the meta-analysis included 37 RCTs. In 55 studies included, 76% investigated RA, 20% investigated SpA, and 4% investigated PsA. In RA effects were found on QoL and function compared to inactive controls, effects not sustained in comparison to active controls. In SpA the effects of PA on QoL were in favor of the control group. Effects on function were found compared to inactive controls and sustained in fatigue and pain when compared to active controls. In PsA no effects on QoL were found but on function compared to inactive controls. The effect size was below 0.30 in the majority of the comparisons.CONCLUSION: PA may improve QoL and self-reported function in RA, SpA, and PsA. However, larger trials are needed, especially in SpA and PsA.
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| 7. |
- Björk, Mathilda, et al.
(author)
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Interventions to facilitate return to work in adults with chronic non-malignant pain: a protocol for a systematic review and network meta-analysis
- 2020
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In: BMJ Open. - : BMJ PUBLISHING GROUP. - 2044-6055. ; 10:11
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Research review (peer-reviewed)abstract
- Introduction Work absenteeism due to chronic non-malignant pain (CNMP) is a major societal and individual cause of concern that requires effective treatments. Objective We present a protocol for a systematic review and network meta-analysis (NMA) aiming to compare available interventions for return to work (RTW) in adults with CNMP. Methods and analysis PubMed, Embase, PsycINFO, Web of Knowledge and Cochrane Central Register of Controlled Trials databases will be searched till 31 August 2020 for randomised controlled trials (RCTs) examining interventions for RTW outcomes among patients with CNMP. Two independent investigators will search the databases, perform data extraction and assess the methodological quality of the selected RCTs. The primary outcome will be RTW, if possible, full-time or part-time after work absence due to chronic pain from baseline to the last available follow-up. Secondary outcomes will include self-reported workability or work capacity, or self-reported physical functioning and quality of life as measured by any validated scale. Pairwise meta-analysis and NMA will be conducted for each outcome using a random-effects model. For the primary outcomes, we will also obtain the ranking of all competing interventions within each NMA using surface under the cumulative ranking curve. The assumption of coherence (ie, that direct and indirect evidence are in statistical agreement) will be examined using both a local and a global approach. We will also conduct subgroup and meta-regression analyses, whenever feasible, to investigate the unexplained variation in effect size. The comparison-adjusted funnel plot will be used to evaluate small-study effects. The overall quality of evidence will be rated with the Confidence in Network Meta-Analysis tool. Data analysis will be conducted using Stata V.16.0. Ethics and dissemination This systematic review does not require ethical approval since it will not disseminate any private patient data. The results of this study will be disseminated through peer-reviewed publication. PROSPERO registration number CRD42020171429.
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| 8. |
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| 9. |
- Boonen, Annelies, et al.
(author)
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EULAR Points to Consider (PtC) for designing, analysing and reporting of studies with work participation as an outcome domain in patients with inflammatory arthritis
- 2021
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In: Annals of the Rheumatic Diseases. - : BMJ Publishing Group Ltd. - 0003-4967 .- 1468-2060. ; 80:9, s. 1116-1123
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Journal article (peer-reviewed)abstract
- BACKGROUND: Clinical studies with work participation (WP) as an outcome domain pose particular methodological challenges that hamper interpretation, comparison between studies and meta-analyses.OBJECTIVES: To develop Points to Consider (PtC) for design, analysis and reporting of studies of patients with inflammatory arthritis that include WP as a primary or secondary outcome domain.METHODS: The EULAR Standardised Operating Procedures were followed. A multidisciplinary taskforce with 22 experts including patients with rheumatic diseases, from 10 EULAR countries and Canada, identified methodologic areas of concern. Two systematic literature reviews (SLR) appraised the methodology across these areas. In parallel, two surveys among professional societies and experts outside the taskforce sought for additional methodological areas or existing conducting/reporting recommendations. The taskforce formulated the PtC after presentation of the SLRs and survey results, and discussion. Consensus was obtained through informal voting, with levels of agreement obtained anonymously.RESULTS: Two overarching principles and nine PtC were formulated. The taskforce recommends to align the work-related study objective to the design, duration, and outcome domains/measurement instruments of the study (PtC: 1-3); to identify contextual factors upfront and account for them in analyses (PtC: 4); to account for interdependence of different work outcome domains and for changes in work status over time (PtC: 5-7); to present results as means as well as proportions of patients reaching predefined meaningful categories (PtC: 8) and to explicitly report volumes of productivity loss when costs are an outcome (PtC:9).CONCLUSION: Adherence to these EULAR PtC will improve the methodological quality of studies evaluating WP.
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| 10. |
- Brodin, Nina, et al.
(author)
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“it’s like listening to the radio with a little interference” : a qualitative study describing pain management among patients with psoriatic arthritis
- 2023
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In: Journal of Clinical Medicine. - : MDPI. - 2077-0383. ; 12:23
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Journal article (peer-reviewed)abstract
- Pain is one of the most important areas to focus on in the assessment and treatment of psoriatic arthritis (PsA), and treatment should be individualized and based on the needs of the patient. Therefore, our aim was to explore and describe the management of pain among patients with PsA. We conducted semi-structured interviews with 11 participants with PsA (3 men and 8 women) and used qualitative content analysis to analyze the text. The results showed a main overarching theme of meaning and three subthemes. They were ‘Taking charge of life despite the constant murmur of pain’ through ‘Sorting out vulnerability’, ‘Reaching acceptance and engagement’, and ‘Directing focus to change’. Nine categories further described the components of pain management: ‘face uncertainty for the future, ‘consider restrictions’, ‘illuminate the invisible’, ‘increase awareness’, ‘find a permissive environment and social support’, ‘enhance inner endurance’, ‘reformulate emotions and thoughts’, ‘use distracting activities’, and ‘adjust activities’. The action components of pain management interpreted from a theoretical perspective highlight the importance for the patients of attaining the satisfaction of three basic psychological needs, i.e., competence, autonomy, and relatedness. Health professionals therefore need to increase the skills required for needs-supportive behaviors as well as facilitating spouse and peer support in the management of pain in PsA.
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