| 1. |
- 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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| 2. |
- 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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| 3. |
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| 4. |
- 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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| 5. |
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| 6. |
- 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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| 7. |
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| 8. |
- Björk, Annette, et al.
(författare)
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A nurse-led lifestyle intervention for adult persons with attention-deficit/hyperactivity disorder (ADHD) in Sweden
- 2020
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Ingår i: Nordic Journal of Psychiatry. - : Taylor & Francis Group. - 0803-9488 .- 1502-4725. ; 74:8, s. 602-612
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Attention-deficit/hyperactivity disorder (ADHD) is associated with lifestyle-related diseases. Therefore, a nurse-led lifestyle intervention including interpersonal relationships, health education and cognitive support was developed to facilitate healthier lifestyle habits.Aim: The aim was to develop a lifestyle intervention and investigate its impact on mental and physical healthMethod: The 52-week intervention included 35 adults with ADHD. In a pre- and post-test design, symptoms of ADHD were measured with the Adult ADHD Self-Report Scale, quality of life was measured with the Adult ADHD Quality of Life scale and mental health was measured with the Hospital Anxiety and Depression scale. Lifestyle habits and dimensions of health were measured by the Lifestyle-Performance-Health Questionnaire and physical fitness was measured by the VO2 Max Test and calculations of waist circumference and body mass index. Result: Post-tests for a group of 25 persons showed positive changes following the intervention regarding weekly physical activity, quality of life and general and mental health. Lifestyle habit support was found to be important. The impact of the intervention should be confirmed in a long-term study with a control group.Conclusion: This intervention may be beneficial and may be implemented in a primary healthcare setting or in other open care units.
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| 9. |
- Björk, Annette, et al.
(författare)
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Adult Persons with ADHD and Their Lifestyle
- 2023
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Ingår i: Clinical Handbook of ADHD Assessment and Treatment Across the Lifespan. - : Springer. - 9783031417092 ; , s. 161-182
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Bokkapitel (övrigt vetenskapligt/konstnärligt)abstract
- Attention deficiency hyperactive disorder (ADHD) is a neuropsychiatric disability characterized by attention problems, impulsivity, and hyperactivity that can affect education, working life, social relationships, and physical and mental health. Research shows a shortened life expectancy in adults with ADHD which has to do with impaired lifestyle habits. In the field of health sciences, it is important to alleviate suffering, promote health, and prevent ill health. The purpose of this chapter is to describe factors that affect the health and lifestyle of adults with ADHD. The method is a literature search. Adults with ADHD were affected by cognitive impairments that affected life to a large extent. Lifestyle habits with a sedentary lifestyle, poor diet, and drug use were more common in people with ADHD. In addition, comorbidity with both physical and mental health is common. Loneliness and deteriorating quality of life plague many people with ADHD. Combined treatment methods with psychosocial interventions are important. Health-promoting lifestyle programs where support for physical, mental, and social health is important. Conclusion: Research on lifestyle programs for adults with ADHD is lacking. There is some research that supports the idea that continuous health-promoting lifestyle programs based on interpersonal relationships, health education, and health discussions as well as cognitive support can be useful for lifestyle changes among people with ADHD.
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| 10. |
- Björk, Annette, et al.
(författare)
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Health, lifestyle habits, and physical fitness among adults with ADHD compared with a random sample of a Swedish general population
- 2018
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Ingår i: Society, health and vulnerability. - : Informa UK Limited. - 2002-1518. ; 9:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Persons with Attention Deficit Hyperactive Disorder (ADHD) represent a high-risk population according to health and lifestyles. In the present study, 48 adults with ADHD were recruited to a forthcoming lifestyle intervention. The ADHD sample was matched to a random sample of 42 persons from a Swedish general population that was selected from LIV (a Lifestyle-Performance-Health project).Objective: To identify potential differences in health, lifestyle habits, and physical fitness between adults with and without ADHD.Method: Self-reported questionnaires and physical fitness tests.Results: The ADHD group show worse health outcomes with higher odds ratios for bad general health (OR;13 CI; (3,4–50)), and poorer lifestyle habits with higher odds ratios for low weekly exercise (OR; 3,8 CI; (1,2–13)). When adjusting for education, employment status, and cash margin, the ADHD sample did not show decreased aerobic fitness (OR; 0,9 CI; (0,8–1,0), but lower odds ratios for doing less sit-ups (OR; 0,6 CI; (0,4–0,9)) compared to the general population group.Conclusion: It is not possible to prove that the ADHD diagnosis itself cause the worse health and lifestyle. Other lifestyle factors may have negative consequences of adult ADHD, such as lower levels of education, less succeed in working life, and minor financial margins.
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| 11. |
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| 12. |
- Björk, Annette, et al.
(författare)
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Perspectives on Everyday Suffering among People with Adult Attention Deficit Hyperactivity Disorder and Concurrent Mental Disorders
- 2017
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Ingår i: Open Journal of Nursing. - : Scientific Research Publishing, Inc.. - 2162-5336 .- 2162-5344. ; 7, s. 583-598
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to describe the perceptions of everyday suffering among adults with attention deficit hyperactivity disorder (ADHD) and comorbid mental disease. Directed content analysis guided by Eriksson’s theory on human suffering was performed on data from 20 individual interviews. Expressions of both suffering and well-being were identified; the former centred on loneliness and related to life, illness, and care, which supported Eriksson’s theory, whereas expressions of well-being related to ADHD diagnosis and supportive social relationships. Nevertheless, results indicate the need to expand those expressions in order to better contribute to developing a supportive rehabilitation regimen that can provide more interpersonal care.
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| 13. |
- Björk, Annette
(författare)
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Stödjande gemenskap : Utveckling och utvärdering av en intervention för livsstilsförändring bland vuxna med adhd
- 2020
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The entire project revolves around a lifestyle intervention that has been developed, implemented and evaluated. The intervention included adults with ADHD and comorbid mental illness. ADHD (Attention Deficiency Hyperactive Disorder) is a neuropsychiatric diagnosis/disability characterized by attention problems, impulsivity and hyperactivity and can affect education, working life, social relationships and form the basis for impaired lifestyle habits. Previous research shows shortened life expectancy in adults with ADHD, which related to deteriorating lifestyle habits. In the long run, the disability may be the basis for impaired living conditions and lifestyle habits and contribute to the individual's well-being and quality of life. In the field of health sciences, it is important to alleviate suffering, promote health and prevent ill health. Thus, the overall aim of this dissertation is to analyze living conditions among people with ADHD and mental illness, as well as to develop and evaluate a lifestyle intervention for this group.The PhD project includes four sub-studies: Study I, a qualitative interview study (n = 20) of adults with ADHD and mental illness, aimed at describing experiences of everyday suffering in this group. The analysis showed experiences of both suffering and well-being in living with ADHD. The focus of the suffering was the experience of loneliness, both regarding relationships in life, relationships in health care, but also to ADHD diagnosis and mental illness. Well-being was experienced when diagnosed with ADHD but also in relation to supportive social relationships. Study II, a quantitative descriptive and comparative study, aimed to gain more knowledge about people withADHD and their health situation. One group of people with ADHD (n = 48)was compared to the normal population without ADHD (n = 42). The results showed poorer health outcomes regarding self-perceived general health and the group with ADHD was less weekly physical active but nevertheless had no decreased aerobic fitness compared to the normal population. Study III, aquantitative descriptive study (n = 25), aimed to examine the degree of acceptance of the intervention and its impact on lifestyle habits, health and well-being, MBI and physical fitness. The tests before and after completing intervention showed small positive effects regarding weekly physical activity, quality of life and general- and mental health. Study IV, a qualitative study(n = 15), with adults with ADHD and comorbid mental illness aimed to investigate the experience of participating in a nurse-led lifestyle intervention. The analysis, based on material from interviews, showed that the participants perceived the intervention as supportive, which is related to the interpersonal relationships that arose in the intervention. Through supportive kindship with the other participants in the intervention, lifestyle habits and health experience were improved.The conclusion of the thesis is that the lifestyle intervention, based on interpersonal relationships and supported kindship, can be useful for making lifestyle changes in adults with ADHD and mental illness. Such support is important because adults with ADHD and mental illness experience a lack of and a desire for social support and has an increased risk of deteriorating health and unhealthy lifestyles. However, future adjustments to the content of the intervention must be made to improve the lifestyle intervention towards more sustainable lifestyle changes. Above all, the lifestyle intervention ought to be continuous. It is also of great importance for further research that insider perspective is used, that is, investigate the professionals' experiences regarding the intervention.
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| 14. |
- Björk, Annette, et al.
(författare)
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The Importance of Belonging to a Context : A Nurse-Led Lifestyle Intervention for Adult Persons with ADHD
- 2021
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Ingår i: Issues in Mental Health Nursing. - : Informa UK Limited. - 0161-2840 .- 1096-4673. ; 42:3, s. 216-226
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Tidskriftsartikel (refereegranskat)abstract
- Living with attention deficit hyperactivity disorder (ADHD) and mental illness involves an increased risk of lifestyle-related diseases. Although there are several ways to provide support to adult persons with ADHD, there is a lack of non-medical strategies for this purpose. This study explore how adult persons with ADHD with mental illness experienced taking part in a nurse-led lifestyle intervention. Fifteen participants participated in a 52-week lifestyle intervention. The analysis revealed two main categories; Building trusting relationships and Health together. This nurse-led lifestyle intervention could be an alternative or complement to current approaches to promoting health in adults with ADHD.
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| 15. |
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| 16. |
- Björk, Mathilda, et al.
(författare)
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Foot barriers in patients with early rheumatoid arthritis : an interview study among Swedish women and men
- 2018
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Ingår i: Arthritis care & research. - : John Wiley & Sons. - 2151-464X .- 2151-4658. ; 70:9, s. 1348-1354
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: Foot impairments are related to reduced mobility and participation restrictions in daily activities in patients with established rheumatoid arthritis (RA). The new biological medications are effective and reduce disease activity, but not disability to the same extent. Foot impairments are assumed to be related to participation restrictions also in patients with early RA, diagnosed after the introduction of biological medications. The knowledge of foot impairments needs to be more explored after the introduction of biological disease-modifying drugs (bDMARDs). The aim of this study was to explore the patients' perspective of foot impairments related to early RA.METHODS: The sample included 59 patients (20-63 years) who were interviewed about participation dilemmas in daily life using the Critical Incident Technique. The interviews were audio-recorded and transcribed. Data related to foot impairments were extracted and analyzed thematically. A research partner validated the analysis. The study was approved by the Regional Ethics Committee.RESULTS: Patients with early RA described a variety of participation restrictions related to foot impairments: 1) foot hindrances in domestic life, 2) foot impairments influencing work, 3) leisure activities restricted by one's feet 4) struggling to be mobile 5) foot impairments as an early sign of rheumatic disease.CONCLUSION: There is a need to focus on foot impairments related to early RA, and for health care professionals to understand these signs. A suggestion for future research is to conduct a longitudinal follow-up of foot impairment related to medication, disease activity and disability in patients diagnosed after the introduction of bDMARDs. This article is protected by copyright. All rights reserved.
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| 17. |
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| 18. |
- Björk, Mathilda, et al.
(författare)
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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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Ingår i: Arthritis care & research. - : John Wiley & Sons. - 2151-464X .- 2151-4658. ; 74:1, s. 31-43
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Forskningsöversikt (refereegranskat)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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| 19. |
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| 20. |
- Kristiansen, Lisbeth, et al.
(författare)
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Urinary incontinence and newly invented pad technique: patients', close relatives' and nursing staff's experiences and beliefs
- 2011
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Ingår i: International Journal of Urological Nursing. - 1749-7701 .- 1749-771X. ; 5:1, s. 21-30
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Tidskriftsartikel (refereegranskat)abstract
- Urinary incontinence (UI) is a major public health issue and considered to be undertreated, costly and often lead to suffering for patients. Close relatives involved in caring for sufferers describe UI as a complicated problem. For older patients, close relatives and staff, it is important with high absorption UI pads in order to have an undisturbed nightly rest and to prevent bedsores. The aim was twofold: to understand older persons', close relatives' and nursing staff's views and experiences of UI, and their experience of using a particular UI pad system with an alarm. A qualitative design with individual and focus-group interviews was used to describe 6 patients', 14 close relatives' and 22 staff's experience of UI. These were analysed by using qualitative manifest analysis. The findings were divided into four categories. The patients expressed that they, due to UI, regarded themselves as burdens to others. The patients, the relatives and some staff experienced UI as a natural consequence of ageing. The UI pad system appeared to be a functional incontinence aid during the night, but more research is needed to develop the product and to find new fields of applications. From all perspectives, it appears that nursing cannot be replaced by technology, though the UI pad system can be a very useful complement in UI nursing care. Complementary use of the UI pad system might lead to a more economically effective and safe use of the existing nursing resources.
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| 21. |
- Meyer, Käthe B., et al.
(författare)
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Long-term experiences of Norwegian live kidney donors: Qualitative in-depth interviews
- 2017
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Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 7:2
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Tidskriftsartikel (refereegranskat)abstract
- Objective: Live kidney donation is generally viewed as a welcome treatment option for severe kidney disease. However, there is a disparity in the body of research on donor experiences and postdonation outcome, and lack of knowledge on long-term consequences described by the donors. This study was conducted to provide insight into donorsī subjective meanings and interpretation of their experiences ∼10 years after donation. Design: Qualitative explorative in-depth interviews. The sampling strategy employed maximum variation. Setting Oslo University Hospital is the national centre for organ transplantation and donation in Norway, and there are 26 local nephrology centres. Participants: 16 donors representing all parts of Norway who donated a kidney in 2001-2004 participated in the study. The interviews were analysed using an interpretative approach. Results: The analysis resulted in 4 main themes; the recipient outcome justified long-term experiences, family dynamics-tension still under the surface, ambivalence-healthy versus the need for regular follow-up, and life must go on. These themes reflect the complexity of live kidney donation, which fluctuated from positive experiences such as pride and feeling privileged to adverse experiences such as altered family relationships or reduced health. Conclusions: Live kidney donors seemed to possess resilient qualities that enabled them to address the long-term consequences of donation. The challenge is to provide more uniform information about long-term consequences. In future research, resilient qualities could be a topic to explore in live donation.
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| 22. |
- Ritschl, Valentin, et al.
(författare)
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Educational readiness among health professionals in rheumatology: low awareness of EULAR offerings and unfamiliarity with the course content as major barriers-results of a EULAR-funded European survey
- 2023
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Ingår i: RMD Open. - : BMJ PUBLISHING GROUP. - 2056-5933. ; 9:2
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundOngoing education of health professionals in rheumatology (HPR) is critical for high-quality care. An essential factor is education readiness and a high quality of educational offerings. We explored which factors contributed to education readiness and investigated currently offered postgraduate education, including the European Alliance of Associations for Rheumatology (EULAR) offerings.Methods and participantsWe developed an online questionnaire, translated it into 24 languages and distributed it in 30 European countries. We used natural language processing and the Latent Dirichlet Allocation to analyse the qualitative experiences of the participants as well as descriptive statistics and multiple logistic regression to determine factors influencing postgraduate educational readiness. Reporting followed the Checklist for Reporting Results of Internet E-Surveys guideline.ResultsThe questionnaire was accessed 3589 times, and 667 complete responses from 34 European countries were recorded. The highest educational needs were professional development, prevention and lifestyle intervention. Older age, more working experience in rheumatology and higher education levels were positively associated with higher postgraduate educational readiness. While more than half of the HPR were familiar with EULAR as an association and the respondents reported an increased interest in the content of the educational offerings, the courses and the annual congress were poorly attended due to a lack of awareness, comparatively high costs and language barriers.ConclusionsTo promote the uptake of EULAR educational offerings, attention is needed to increase awareness among national organisations, offer accessible participation costs, and address language barriers.
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| 23. |
- Rönngren, Ylva, et al.
(författare)
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Educational nurse-led lifestyle intervention for persons with mental illness.
- 2018
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Ingår i: International Journal of Mental Health Nursing. - : Wiley-Blackwell. - 1445-8330 .- 1447-0349. ; 27:3, s. 1022-1031
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Tidskriftsartikel (refereegranskat)abstract
- Although persons with severe mental illness face an increased risk of mortality and of developing negative health outcomes, research has shown that lifestyle interventions can sufficiently support their health. In response, this study examined a nurse-led lifestyle intervention developed in cooperation with members of municipal and county councils to gauge its impact on the quality of life, cognitive performance, walking capacity, and body composition of persons with severe mental illness. Lasting 26 weeks and involving 38 persons with severe mental illness, the intervention prioritised two components: the interpersonal relationships of persons with severe mental illness, staff, and group leaders and group education about physical and mental health. Pre-post intervention measurements of quality of life collected with the Manchester Short Assessment of Quality of Life, cognitive performance with the Frontal Systems Behaviour Scale, walking capacity with a 6-min walk test, and body composition in terms of waist circumference and body mass index were analysed using a nonparametric test Wilcoxon signed-rank test. Results suggest that the intervention afforded significant improvements in the health-related variables of quality of life, cognitive performance, walking capacity, and waist circumference for persons with severe mental illness. However, long-term studies with control groups and that examine parameters related to cardiovascular risk factors are essential to ensure the sustained impact of the intervention.
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| 24. |
- Rönngren, Ylva, et al.
(författare)
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Initiating and Maintaining a Lifestyle Program Directed at Persons Living with Severe Mental Illness in a Municipality Care Setting
- 2024
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Ingår i: Issues in Mental Health Nursing. - : Informa UK Limited. - 0161-2840 .- 1096-4673. ; 45:7, s. 706-714
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Tidskriftsartikel (refereegranskat)abstract
- Lifestyle programs are effective in improving the health of persons living with severe mental illness. However, the implementation of these programs and making them a sustainable part of daily care remain challenging. This qualitative descriptive study aimed to describe how staff worked with and experienced a lifestyle program in a municipality mental health care setting over time. The program intended to support persons living with severe mental illness to overcome health challenges. Data was collected at three time points spanning 7?years. The staff motivated the participants with SMI with severe mental illness to take part in the program, prepared them, and gave them individualized lifestyle support. A key factor of the program?s implementation was the staff?s interest and engagement in lifestyle questions. According to the staff it was apparent that small efforts such as running the present program could give synergic health effects such as improved mental- and social health. This study shows that it is feasible to conduct this lifestyle program in ordinary care without considerable resources. However, support from management is crucial, as well as the development of guidelines and routines of the work with lifestyle questions.
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| 25. |
- Rönngren, Ylva, et al.
(författare)
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LIFEHOPE.EU – Lifestyle & Healthy Outcome in Physical Education : Development of a lifestyle intervention program for people with severe mental illness: Physical activity, dietary changes, and cognitive adaptation training
- 2014
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Ingår i: Journal of Psychiatric and Mental Health Nursing. - : Wiley. - 1351-0126 .- 1365-2850. ; 21:10, s. 924-930
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Tidskriftsartikel (refereegranskat)abstract
- People with severe mental illness (SMIs) are more prone to physicalillnesses, increased mortality and cognitive impairments, all of whichnegatively influence their daily lives. Physical activity (PHYS)programmes have helped alleviate SMI. LIFEHOPE is an ongoing researchproject with the purpose of developing a sustainable lifestyleintervention for physical and mental health. PHYS/cognitive adaptationtraining (CAT) is a newly created lifestyle intervention that providesgroup education and is based on CAT. It provides individualized supportfor PHYS and dietary change in a natural nursing environment. The aim ofthis study was to obtain further knowledge for developing a sustainablelifestyle programme by exploring psychiatric clients' experiences withPHYS and lifestyle habits, which we did by interviewing a localreference group, community mental healthcare users and community mentalhealthcare workers. Then, we developed a lifestyle programme for peoplewith SMI using information obtained from these focus group interviews.Our results suggest that there is a need for support and education, aswell as active interventions, in carrying out PHYS and dietary changesamong people with SMIs, and the PHYS/CAT may be a useful strategy.
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| 26. |
- Rönngren, Ylva, et al.
(författare)
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Meeting the needs? Perceived support of a nurse-led lifestyle programme for young adults with mental illness in a primary health-care setting
- 2018
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Ingår i: International Journal of Mental Health Nursing. - : Wiley. - 1445-8330 .- 1447-0349. ; 27:1, s. 390-399
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Tidskriftsartikel (refereegranskat)abstract
- Being a young adult with mental illness challenges all aspects of health, including an increased risk for developing lifestyle-related diseases. There is a lack of lifestyle programmes in primary health care that target physical, mental, and social needs for young adults with mental illness. The aim of the present study was to describe the experiences of young adults with mental illness receiving support from a nurse-led lifestyle programme, and how this support was related to their life context, including challenges and coping strategies. Two focus groups and six individual interviews were performed with 13 young adults (16-25 years), and analysed using a qualitative content analysis. The findings showed that the young adults experienced challenges in their daily lives, including psychiatric symptoms, lack of social understanding, and loneliness. The study indicated that the programme could support lifestyle habits with its components of supportive interpersonal relationships, awareness of coping strategies, understanding of health and illness, and cognitive support (e.g. schedules and reminders). However, the programme could not meet everyone's needs for new social relationships or more comprehensive support. Even so, this nurse-led programme provides health information-management strategies that could easily be integrated in a primary health-care setting.
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| 27. |
- Rönngren, Ylva, et al.
(författare)
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Perspectives of a tailored lifestyle program for people with severe mental illness receiving housing support
- 2018
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Ingår i: Perspectives in psychiatric care. - : John Wiley & Sons. - 0031-5990 .- 1744-6163. ; 54:2, s. 309-316
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: The purpose of the present study was to describe the acceptability of the lifestyle program PHYS/CAT and to get information about the tools used for assessment of functional exercise capacity, cognitive performance, and self-health-related quality of life.DESIGN AND METHODS: The findings are based on focus groups and the researchers' experiences of conducting the program as well as using the assessment tools.FINDINGS: The acceptability of the program and the assessment tools was mainly satisfactory.PRACTICE IMPLICATIONS: The program with relational, educational, and supportive dimensions may be a promising tool to be integrated into daily nursing care.
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| 28. |
- Sverker, Annette, et al.
(författare)
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Dilemmas of participation in everyday life in early rheumatoid arthritis : a qualitative interview study (The Swedish TIRA Project)
- 2015
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Ingår i: Disability and Rehabilitation. - : INFORMA HEALTHCARE. - 0963-8288 .- 1464-5165. ; 37:14-15, s. 1251-1259
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To explore the experiences of today's patients with early rheumatoid arthritis (RA) with respect to dilemmas of everyday life, especially regarding patterns of participation restrictions in valued life activities. Methods: A total of 48 patients, aged 20-63, three years post-RA diagnosis were interviewed using the Critical Incident Technique. Transcribed interviews were condensed into meaningful units describing actions/situations. These descriptions were linked to ICF participation codes according to the International Classification of Functioning, Disability and Health (ICF) linking rules. Results: Dilemmas in everyday life were experienced in domestic life, interpersonal interactions and relationships, community, social and civic life. Most dilemmas were experienced in domestic life, including participation restrictions in, e.g. gardening, repairing houses, shovelling snow, watering pot plants, sewing or walking the dog. Also many dilemmas were experienced related to recreation and leisure within the domain community, social and civic life. The different dilemmas were often related to each other. For instance, dilemmas related to community life were combined with dilemmas within mobility, such as lifting and carrying objects. Conclusions: Participation restrictions in today's RA patients are complex. Our results underline that the health care needs to be aware of the patients' own preferences and goals to support the early multi-professional interventions in clinical practice.
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| 29. |
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| 30. |
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| 31. |
- Sverker, Annette, et al.
(författare)
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Dilemmas ofparticipation in everyday life in early rheumatoid arthritis. A qualitativeinterview study (The Swedish TIRA Project).
- 2014
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Ingår i: Disability and Rehabilitation. - 0963-8288 .- 1464-5165.
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Tidskriftsartikel (refereegranskat)abstract
- Abstract Purpose: To explore the experiences of today's patients with early rheumatoid arthritis (RA) with respect to dilemmas of everyday life, especially regarding patterns of participation restrictions in valued life activities. Methods: A total of 48 patients, aged 20-63, three years post-RA diagnosis were interviewed using the Critical Incident Technique. Transcribed interviews were condensed into meaningful units describing actions/situations. These descriptions were linked to ICF participation codes according to the International Classification of Functioning, Disability and Health (ICF) linking rules. Results: Dilemmas in everyday life were experienced in domestic life, interpersonal interactions and relationships, community, social and civic life. Most dilemmas were experienced in domestic life, including participation restrictions in, e.g. gardening, repairing houses, shovelling snow, watering pot plants, sewing or walking the dog. Also many dilemmas were experienced related to recreation and leisure within the domain community, social and civic life. The different dilemmas were often related to each other. For instance, dilemmas related to community life were combined with dilemmas within mobility, such as lifting and carrying objects. Conclusions: Participation restrictions in today's RA patients are complex. Our results underline that the health care needs to be aware of the patients' own preferences and goals to support the early multi-professional interventions in clinical practice. Implications of Rehabilitation Today's rheumatoid arthritis (RA) patients experience participation restrictions in activities not included in International Classification of Functioning, Disability and Health (ICF) core set for RA or in traditionally questionnaires with predefined activities. The health care need to be aware of the patients' own preferences and goals to meet the individual needs and optimize the rehabilitation in early RA in clinical practice.
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| 32. |
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| 33. |
- Sverker, Annette, 1958-, et al.
(författare)
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Time to update the ICF by including socioemotional qualities of participation? : The development of a ‘patient ladder of participation’ based on interview data of people with early rheumatoid arthritis (The Swedish TIRA study)
- 2020
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 42:9, s. 1212-1219
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The aim of was to identify and illustrate in what situations and with what qualities people with early RA experience participation in every day’s life.Methods: 59 patients (age 18-63 years) were interviewed; 25 men and 34 women. Content analysis was used to identify meaning units which were sorted based on type of situations described and later on, categories based on quality aspects of participation were developed.Results: Participation was described as: 1. being part of a group, where a sense of belonging arose. 2. In doing activities with others for example at work or in leisure. 3. When sharing everyday chores and responsibilities for example in domestic duties. 4. When experiencing influence on actions such as when being asked for opinions on how to conduct a specific task. 5. When having the possibility to give direction of goals in rehabilitation, or elsewhere. 6. When sharing decision making and experiencing a high degree of influence in the situation.Conclusions: Participation from an individual’s perspective is about belonging and having influence that mediates a positive feeling of being included and that you matter as a person. The results are important when using participation as a goal in clinical care. It’s important to expand participation beyond the definitions in ICF and guidelines to include the patients’ socio-emotional participation in order to promote health.
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| 34. |
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| 35. |
- Östlund, Gunnel, 1956-, et al.
(författare)
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Adjustment, avoidance, interaction, and acceptance strategies where used by men with participation restrictions due to early RA
- 2015
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Konferensbidrag (refereegranskat)abstract
- Background: Approximately 1/3 of patients diagnosed with the chronic disease Rheumatoid Arthritis (RA) are men, however few studies describe experiences and strategies to handle daily activities [2]. Daily life with a chronic disease means learning to live under new circumstances. This also foresee a continuous adaptation to new ways of living. The process of coping in which the individual change the perceived cause of stress as in problem-focused coping or when managing the emotions of stress, as in emotion-focused coping where first mentioned by Lazarus and Folkman [1]. Coping is described as an individual style to handle stressful events that might be changed over time.Objectives: The aim was to explore men's strategies for dealing with participation restrictions in everyday life due to early RA.Methods: This study is associated with the prospective multi-centre early arthritis project under the Swedish acronym “TIRA-2” [3]. Participants were 25 males of which 22 were work active, mean age 53 years, contemporary treated with mean disease duration of 3 years. Individual interviews were done using the Critical Incident Technique (CIT) [4]. The verbatim transcribed text were analyzed and categorized using content analysis. The study has been approved by the Ethics Committee.Results: The men experienced that RA partly required a changed life style and most of them used a combination of strategies to deal with the participation restrictions in relation to RA. In the adjustment strategy new behaviors and tools were used to solve participation restrictions. The avoidance strategy included deliberate avoidance of possible participation restrictions, such as staying at home in the evenings and avoiding socializing with friends. The interaction strategy included to verbally express needs and give demands in relation to others both at work and in the family and ask for help when needed. The acceptance strategy was identified by the wordings used when talking about the experienced participation restrictions as “I accept that everything takes longer time”.Conclusions: The interviewed men with early RA were contemporary treated and active in the work force, still, all of them had to deal with some participation restrictions. Moreover, this study claims that most men used a combination of strategies to deal with the experienced participation restriction.
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| 36. |
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| 37. |
- Östlund, Gunnel, 1956-, et al.
(författare)
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Emotions related to participation restrictions as experienced by patients with early rheumatoid arthritis : A qualitative interview study (The Swedish TIRA project)
- 2014
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Ingår i: Clinical Rheumatology. - : Springer Science and Business Media LLC. - 0770-3198 .- 1434-9949. ; 33:10, s. 1403-1413
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Tidskriftsartikel (refereegranskat)abstract
- Background: Psychological distress is a well-known complication in rheumatoid arthritis (RA), but knowledge regarding emotions, and their relationship to participation restrictions, is scarce.Objectives: To explore emotions related to participation restrictions by patients with early RA. Method: In this study, 48 patients with early RA, aged 20-63 years, were interviewed about participation restrictions using Critical Incident Technique. Information from transcribed interviews was converted into dilemmas and linked to ICF participation codes. The emotions described were condensed and categorized.Results: Hopelessness and sadness were described when trying to perform daily activities such as getting up in the mornings, getting dressed, or not being able to perform duties at work. Sadness was experienced in relation to not being able to continue leisure activities or care for children. Examples of fear descriptions were found in relation to deteriorating health and fumble fear, which made the individual withdraw from activities as a result of mistrusting the body. Anger and irritation were described in relation to domestic and employed work, but also in social relations where the individual felt unable to continue valued activities. Shame or embarrassment was described when participation restrictions became visible in public.Conclusions: Feelings of grief, aggressiveness, fear and shame are emotions closely related to participation restrictions in everyday life in early RA. Emotions related to disability need to be addressed both in clinical settings in order to optimize rehabilitative multi-professional interventions and in research to achieve further knowledge.
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| 38. |
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| 39. |
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| 40. |
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| 41. |
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| 42. |
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| 43. |
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| 44. |
- Östlund, Gunnel, 1956-, et al.
(författare)
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Lived experiences of sex life difficulties in men and women with early RA – The Swedish TIRA Project
- 2015
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Ingår i: Musculoskeletal Care. - : Wiley. - 1478-2189 .- 1557-0681. ; 13:4, s. 248-257
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Tidskriftsartikel (refereegranskat)abstract
- Background: Men and women with rheumatoid arthritis (RA) experience restrictions in everyday life, in spite of the development of new medications. Recent research has described in detail how participation limitations are experienced in everyday life from a patient perspective. However, knowledge of how sex and intimate relationships are affected is still scarce.Objectives: The aim of the present study was to explore sex life experiences in relation to sexual function and sexual relationships in men and women with early RA.Methods: The study formed part of TIRA-2 (the Swedish acronym for the prospective multicentre early arthritis project). The data collection included 45 interviews with 21 men and 24 women, aged 20–63, which were recorded and transcribed verbatim. The critical incident technique was used to collect data, and content analysis to categorize the results.Results: Half the participants stated that RA affected their sex life. The general descriptions formed five categories: sex life and tiredness; sex life and ageing; emotional consequences of impaired sexual function; facilitators of sexual function and sexual relationships; and strain on the sexual relationship.Conclusions: Sex life is affected in early RA, in spite of new effective treatment strategies. New strategies of communication, assessment and self-managing interventions concerning the sex lives of patients with RA need to be implemented by a multidisciplinary healthcare team.
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| 45. |
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| 46. |
- Östlund, Gunnel, 1956-, et al.
(författare)
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The use of avoidance, adjustment, interaction and acceptance strategies to handle participation restrictions among Swedish men with early rheumatoid arthritis.
- 2016
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Ingår i: Musculoskeletal Care. - : Wiley. - 1478-2189 .- 1557-0681. ; 14:4, s. 206-218
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Tidskriftsartikel (refereegranskat)abstract
- ObjectivesLiving with a chronic disease means learning to live under new circumstances and involves a continuous adaptation to new ways of living. There is increasing knowledge about how people cope with stressful life events and adapt to new life situations. Approximately a third of patients diagnosed with rheumatoid arthritis (RA) are men; however, few studies have described the needs and experiences of men living with RA. The aim of the present study was to explore men's strategies for handling challenges related to participation in everyday life.MethodsThe present study was associated with the prospective Swedish multicentre early arthritis project (given the Swedish acronym TIRA), which, in 2006–2009, included patients with early RA, contemporarily treated, with a mean disease duration of three years. From this cohort, 25 men, aged 20–63 years, were recruited consecutively. Data were collected in individual interviews, using the critical incident technique. The strategies for dealing with the challenges of RA in everyday life were analysed and categorized using content analysis.ResultsMen with RA described four types of strategy for dealing with participation restrictions in everyday life: (i) Adjustment strategies – adjust behaviour, movements, medication, equipment and clothing to find new ways to conduct tasks or activities; (ii) Avoidance strategies – avoid activities, movements, social contacts and sometimes medication; (iii) Interaction strategies – say no, ask for help and work together to handle participation restrictions; and (iv) Acceptance strategies – learn to accept RA, with the pain, the slower work pace and the extended time needed.ConclusionsAccording to men's lived experiences, a combination of strategies was used to deal with RA, depending on the situation and the experienced restriction. The results provided an understanding of how men with RA manage their disease, to reduce physical, social and emotional challenges. This knowledge may be used further to develop multi-professional interventions and patient education tailored to men with RA.
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| 47. |
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| 48. |
- Östlund, Gunnel, 1956-, et al.
(författare)
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Womens situation-specific strategies in managing participation restrictions due to early rheumatoid arthritis : A gender comparison
- 2018
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Ingår i: Musculoskeletal Care. - : Wiley-Blackwell. - 1478-2189 .- 1557-0681. ; 16:2, s. 251-259
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Tidskriftsartikel (refereegranskat)abstract
- IntroductionThe present study explored how women describe their use of situation‐specific strategies when managing rheumatoid arthritis (RA). The aim was also to compare women's strategies with those of men, and see the extent to which they used the same strategies.MethodsThe data were collected using semi‐structured interviews based on the critical incident technique. The sample consisted of women with early rheumatic arthritis (n = 34), and the results were compared with data reported in a previous study on men (n = 25) from the same cohort. The patient‐described participation restrictions due to RA were firstly linked to the domains of the International Classification of Functioning, Disability and Health (ICF). The different strategies used were then categorized. The study was approved by the Research Ethics Committee of the Faculty of Health Sciences, Linköping University, Sweden.ResultsThe study found that women used four situation‐specific strategies: adjustment, avoidance, interaction and acceptance. The same strategies had been found previously in interviews with men with RA. Women and men used these strategies to a similar extent in the ICF domains of mobility; major life arenas; domestic life; interpersonal interactions and relationships; and community, social and civic life. However, some differences were found, relating to the reported activities in self‐care and domestic life, in which women reported using strategies to a greater extent than men.ConclusionsWomen and men used four types of situation‐specific strategies in managing RA; adjustment, avoidance, interaction and acceptance. These situation‐specific strategies provide useful knowledge, in terms of multidisciplinary rehabilitation and for patients' significant others.
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