Eva Valtersson

Dilemmas of participation in everyday life in early rheumatoid arthritis: a qualitative interview study (The Swedish TIRA Project)

Abstract Purpose: To explore the experiences of todays 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.

The Use of Avoidance, Adjustment, Interaction and Acceptance Strategies to Handle Participation Restrictions Among Swedish Men with Early Rheumatoid Arthritis

OBJECTIVES Living 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 mens strategies for handling challenges related to participation in everyday life. METHODS The 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. RESULTS Men 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. CONCLUSIONS According to mens 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.

Lived Experiences of Sex Life Difficulties in Men and Women with Early RA - The Swedish TIRA Project.

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. Copyright

The foot as a barrier in patients with early rheumatoid arthritis – an interview study among Swedish women and men

Foot impairments are related to reduced mobility and participation restrictions in daily activities in patients with established rheumatoid arthritis (RA). The new biologic 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 biologic medications. Knowledge of foot impairments needs to be explored further after the introduction of biologic disease‐modifying antirheumatic drugs (bDMARDs). The aim of this study was to explore the patients’ perspective of foot impairments related to early RA.

Validation and internal consistency of the Swedish version of the Valued Life Activities scale

Objective: The objective was to create a linguistically and culturally validated Swedish version of the Valued Life Activities scale. The aim was also to describe its content and concurrent validity and its internal consistency in persons with rheumatoid arthritis. Methods: The Valued Life Activities scale was translated to Swedish and culturally adapted. In order to describe the content validity, both the Swedish and original Valued Life Activities scale were linked to the International Classification of Functioning, Disability and Health. The concurrent validity and internal consistency were evaluated in 737 patients with rheumatoid arthritis. To establish concurrent validity, the scale was correlated to disease activity, activity limitations, and life satisfaction. Internal consistency was assessed with Cronbach’s alpha. Results: The equivalence of meaning between the Swedish and the original Valued Life Activities scale was ensured by harmonization review. Content validity was high when linked to the International Classification of Functioning, Disability and Health. Concurrent validity showed a strong correlation with the activity limitations (r = 0.87), moderate with life satisfaction (r = –0.61), and weak with disease activity (r = 0.38). Internal consistency was excellent (Cronbach’s alpha = 0.97). Conclusions: The Swedish Valued Life Activities scale has been tested in a large and well-characterized sample and found to be a linguistically valid and culturally adapted self-reported measure of participation. Content validity of the Valued Life Activities scale was excellent, concurrent validity strong, and the internal consistency excellent. Since both individual preferences and International Classification of Functioning, Disability and Health concepts of disability are taken into account, the Swedish Valued Life Activities scale appears to be a promising new scale addressing important aspects of participation.

AB1221-HPR Adjustment, Avoidance, Interaction, and Acceptance Strategies Where Used by Men with Participation Restrictions Due to Early RA

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 mens 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. References Lazarus, R. S., Folkman, S. Stress, Appraisal and Coping 1984, New york: Springer Publishing Company. Shuttleworth, RP (2004). Disabled masculinity; Expanding the masculine repertoire. In Smith BG, Hutchinson B (Eds). Gendering disability, New Brunswick, NJ; Rutgers University Press. Thyberg I, Dahlstrom O, Björk M, Arvidsson P, Thyberg M. Potential of the HAQ score as clinical indicator suggesting comprehensive multidisciplinary assessments: the Swedish TIRA cohort 8 years after diagnosis of RA. Clin Rheumatol 2012; 31(5):775-83. Flanagan C. The critical incident technique. Psychol Bull 1954; 51:327–358. Disclosure of Interest None declared

AB1154-HPR Men's Strategies of Handling Participation Restrictions Related to Rheumatoid Arthritis (The Swedish Tira Study)

Background In spite of early interventions and advancements in medication disability and restricted work capacity is closely related to rheumatoid arthritis (RA). Around 1/3 of diagnosed patients are men, however few studies describe mens need and experiences of living with RA [1]. Objectives To explore male strategies of handling participating restriction in everyday life. Methods In this study 25 men with early RA from the TIRA2 cohort [2], age 20 – 63, were interviewed about participation restrictions with Critical Incident Technique [3]. Transcribed interviews were synthesized into dilemmas and linked to ICF participation [4] codes and the strategies in handling these dilemmas were analyzed and categorized using content analysis [5]. Results The men described four types of strategies of handling participating restriction in everyday life. Resilience strategies; to find enjoyments, develop self-trust, and a new body-knowledge. Daily routine strategies; use more time on each task and rest in between activities, adjust medication to activity, adjust movements finding new ways to conduct work tasks and physical training. Avoidance strategies; avoid alcohol, social contacts after work, inform of RA and sometimes medicine. Action strategies; continue activities, attend activities as a spectator instead of being an active participant, go home if needed, say no, ask for help, and talk about RA. Acceptance strategies; accept pain, accept less work pace, accept less endurance and fewer activities. Conclusions Men described dilemmas in everyday life due to RA, but not all experienced being restricted in life they rather expressed reorganizing their everyday lives. References Shuttleworth RP (2004). Disabled masculinity; Expanding the masculine repertoire. In Smith BG, Hutchinson B (Eds). Gendering disability, New Brunswick, NJ; Rutgers University Press. Björk M, Thyberg I, Rikner K, Balogh I, Gerdle B. Sick leave before and after diagnosis of rheumatoid arthritis: a report from the Swedish TIRA project. J Rheumatol 2009;36:1170-1179. Flanagan, C (1954). The critical incident technique. Psychological Bulletin, 51: p. 327-358. Cieza A, Geyh S, Chatterji S, Kostanjsek N, Ustun B, Stucki G ICF linking rules: an update based on lessons learned. J Rehabil Med. 2005;37:212-8. Sverker A, Thyberg I, Östlund G, Valtersson E, Thyberg M. (2013). Participation in work in early rheumatoid arthritis: A qualitative interview study interpreted in terms of the ICF. Disability & Rehabilitation May (3); ISSN1464-5165 Disclosure of Interest None declared DOI 10.1136/annrheumdis-2014-eular.3717

Emotions related to participation restrictions experienced by patients with early rheumatoid arthritis: : A qualitative interview study (The Swedish TIRA study)

Background Psychological distress is a well-known complication in rheumatoid arthritis (RA). It is usually studied by questionnaires with predefined items related to mental functions, and the knowledge regarding the full spectrum of emotions and their relations to practical participation restrictions is still scarce. Objectives The aim was to explore emotionsrelated to participation restrictions. Methods This study is part of the Swedish TIRA-project [1]. 48 patients with early RA, age 20 – 63, were interviewed about participation restrictions with Critical Incident Technique [2]. Transcribed interviews were synthesized into dilemmas and linked to ICF activity/participation codes [3]. The emotions described by the patients have been condensed and categorized. Results Sadness, fear, anger, and shame were expressed in relation to RA participation restrictions. Sadness was described when trying to perform daily activities such as getting up in the mornings, getting dressed, or at work when not being able to perform duties. Sadness was also experienced in relation to not being able to continue leisure activities or in caring for children. Examples of fear descriptions were found in relation to the deteriorating health and fumble fear made the individual withdraw from activities when mistrusting the body. Anger was described in relation to domestic and employed work, but also in social relations when the individual felt hindered to continue valued activities. Shame or embarrassments were described when participation restrictions became visible in public. Conclusions Sadness, anger, fear and shame are closely related to practical participation restrictions and may be addressed by corresponding multiprofessional interventions that facilitate participation. References Björk, M., Thyberg, I., Rikner, K., Balogh, I., Gerdle, B. (2009). Sick leave before and after diagnosis of rheumatoid arthritis: a report from the Swedish TIRA project. J Rheumatol;36:1170-1179. Flanagan, C. (1954). The critical incident technique. Psychological Bulletin; 51:327-358. Cieza, A., Geyh, S., Chatterji, S., Kostanjsek, N., Ustun, B., Stucki, G. (2005). ICF linking rules; an update based on lessons learned. J Rehabil Med; 37: 212-218. Disclosure of Interest None Declared