| 1. |
- Feldthusen, Caroline, 1977, et al.
(författare)
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Perception, consequences, communication, and strategies for handling fatigue in persons with rheumatoid arthritis of working age—a focus group study
- 2013
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Ingår i: Clinical Rheumatology. - : Springer Science and Business Media LLC. - 0770-3198 .- 1434-9949. ; 32:5, s. 557-66
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Tidskriftsartikel (refereegranskat)abstract
- Abstract The aim of this study was to describe how persons with rheumatoid arthritis (RA) of working age experience and handle their fatigue in everyday life. Six focus group discussions were conducted focusing on experiences of fatigue in 25 persons with RA (19 women, 6 men), aged 20–60 years. The discussions were recorded, transcribed verbatim, and analyzed according to qualitative content analysis. The analyses resulted in four categories. (1) Perception of fatigue: Fatigue was experienced different from normal tiredness, unpredictable, and overwhelming. It was associated with negative emotions, changed self-image, and fears. Feelings of frustration and shame were central when the persons were forced to omit valued life activities. (2) Consequences due to fatigue: The fatigue caused changes in cognitive ability, ability to act, and overall activity pattern where the increased need for rest and sleep caused an imbalance in daily life. The participants struggled not to let the fatigue interfere with work. The fatigue also brought negative consequences for their significant others. (3) Communicating fatigue: Fatigue was difficult to gain understanding for, and the participants adjusted their communication accordingly; it was important to keep up appearances. During medical consultation, fatigue was perceived as a factor not given much consideration, and the participants expressed taking responsibility for managing their fatigue symptoms themselves. (4) Strategies to handle fatigue: Strategies comprised conscious self-care, mental strategies, planning, and prioritizing. Fatigue caused considerable health problems for persons with RA of working age: negative emotions, imbalance in daily life due to increased need for rest, and difficulties gaining understanding. This draws attention to the importance of developing new modes of care to address fatigue in RA. Person-centered care to improve balance in life may be one approach needing further investigations.
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| 2. |
- Ahlstrand, Inger, et al.
(författare)
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Pain and difficulties performing valued life activities in women and men with rheumatoid arthritis
- 2015
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Ingår i: Clinical Rheumatology. - : Springer Verlag (Germany). - 0770-3198 .- 1434-9949. ; 34:8, s. 1353-1362
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Tidskriftsartikel (refereegranskat)abstract
- This study aimed to examine the difficulties with performing valued life activities in relation to pain intensity in women and men with rheumatoid arthritis (RA). In total, 737 persons with RA (73 % women) from three rheumatology units in Sweden responded to a questionnaire measuring performance of 33 valued life activities and self-rated pain. The relationships between performance of valued life activities (VLAs) and pain (measured by visual analogue scale (VAS)) were analysed based on gender. Multiple linear regression analyses were conducted with the total VLA score as dependent variable. Women reported more pain and difficulties in performing valued life activities than men. Across genders, 85 % reported at least one valued life activity affected by RA. Significantly more women than men encountered difficulties in performing some activities such as cooking, gardening and meeting new people. Women reported higher pain intensity (35 mm) than men (31 mm). Almost all 33 difficulty ratings for valued life activities were higher among persons with high pain (greater than 40 mm) than persons with lower pain. Difficulty ratings for valued life activities correlated positively with pain in persons with lower pain, but not among those with high pain. The results highlight the importance of addressing pain, especially among women with RA, as they reported pain to impact on their valued life activities. Interestingly, this was evident also in women with lower levels of pain.
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| 3. |
- Ahlstrand, Inger, et al.
(författare)
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Smärta och dagliga aktiviteter vid Reumatoid artrit ur ett patientperspektiv
- 2011
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Bakgrund: Smärta vid Reumatoid artrit (RA) ärett välkänt symtom som orsakar lidande ochaktivitetsbegränsning. Traditionellt mäts smärtainom reumatologin som smärtintensitet på enVisuell Analog Skala (VAS). Kunskapen kring hurpatienter med RA upplever smärta och dess konsekvenser är begränsad. Patientens egenbeskrivning behövs som underlag för behandlingsplanering och för att utveckla nya metoderför att beskriva problematiken.Syfte: Syftet med studien är att beskriva smärtavid RA ur ett patientperspektiv med fokus på hursmärtan påverkar dagliga aktiviteter.Metod: Patienter med diagnostiserad RA i syd-östra Sverige identifierades via Svenska Reumatologiregistret. Urvalet baserades på minst 5 årssjukdomsduration och minst 40 mm smärtintensitet på VAS vid de två senaste besöken på reumatologklinik. Sammanlagt 33 patienter, 7 män och26 kvinnor, deltog i sju fokusgrupper. Gruppernaformades utifrån kön och ålder. Intervjuguideninnehöll frågor som: Hur beskriver patienter medRA sin smärta? Vad påverkar smärtan? Vilkakonsekvenser har smärtan för aktivitetsutförande,aktivitetsbalans och undvikande av aktivitet? Enkvalitativ innehållsanalys görs.Resultat/förväntat resultat: Analyser hittills visar patienternas frustration över att inteklara det man vill eller behöver göra, beroendeav andra, minskade möjligheter till delaktigheti sociala sammanhang. Och närståendes betydelse. Analyserna visar att smärtan är relaterad till Göteborg6-8 april 201134trötthet, stress och sinnesstämning och att arbeteeller andra aktiviteter medverkar till att glömmabort smärtan och uppehålla förmåga. Analysenslutförs under hösten.Konklusion: Denna studie förväntas genererany angelägen kunskap om och förståelse försmärta.
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| 4. |
- Areskoug Josefsson, Kristina, 1973-, et al.
(författare)
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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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Ingår i: Open Journal of Rheumatology and Autoimmune Diseases. - : Scientific Research Publishing. - 2163-9914 .- 2164-005X. ; 10:3, s. 109-124
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Tidskriftsartikel (refereegranskat)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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| 5. |
- Bergström, Maria, 1983-, et al.
(författare)
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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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Ingår i: Scandinavian Journal of Occupational Therapy. - : Taylor & Francis Ltd. - 1103-8128 .- 1651-2014. ; 30:5, s. 616-627
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Tidskriftsartikel (refereegranskat)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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| 6. |
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| 7. |
- Bergström, Maria, 1983-
(författare)
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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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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)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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| 8. |
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| 9. |
- Bergström, Maria, et al.
(författare)
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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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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 42:3, s. 385-393
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Tidskriftsartikel (refereegranskat)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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| 10. |
- Björk, Mathilda, 1977-
(författare)
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Aspects of Disability in Rheumatoid Arthritis : a five-year follow-up in the Swedish TIRA project
- 2008
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Rheumatoid arthritis (RA) is a progressive disease, often leading to disability. Because the disease course develops rapidly during the first years after diagnosis, more knowledge is needed about the early disease course to minimize later disability. This thesis describes the course of disability in early RA such as hand function, pain intensity, activity limitation and sick leave. In addition, this thesis compares disability between women and men and compares disability between RA patients and referents.This thesis is primarily based on data from the 320 patients that were included in the multi-centre project in Sweden called ‘Early interventions in rheumatoid arthritis’ (TIRA). A wide range of outcome variables was registered between 1996 and 2006 during regular follow-ups from time for diagnosis through the eight-year follow-up. Outcome regarding disease activity and disability of RA patients still remaining in TIRA at the three and five year follow-up respectively are used in this thesis. Data concerning sick leave were obtained for the patients during six years (1993-2001) – three years before and three years after diagnosis. Referents were included in two of the studies. Data regarding disability in referents were obtained according to hand function and activity limitation using the Health Assessment Questionnaire (HAQ). Data for sick leave were obtained for six years in referents, for the same period as the RA patients.For most variables, disability in RA was most pronounced at time of diagnosis but before intervention started. Disability was then reduced already at the 3-month follow-up and thereafter affected but stable during the following five years. The exception was participation, reflected by sick leave, a variable that was stable from inclusion to three years from diagnosis. Activity limitation, pain intensity and sick leave in RA that represents different aspects of disability were explained by other aspects of disability and contextual factors rather than by disease activity. RA affects women and men differently in some aspects. Women had more severe course of activity limitations than men according to HAQ. Men were more affected than women in range of motion, although the differences were small in a clinical perspective. However, pain intensity and frequency of sick leave did not differ between women and men. Patients with RA have pronounced disability in relation to referents although several variables improve soon after diagnosis. This discrepancy refers to hand function as well as activity limitations and sick leave. The frequency of sick leave increased during the year before diagnosis in relation to referents and was thereafter high compared to sick leave in referents.
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