Annette Sverker

‘I lose all these hours…’– exploring gender and consequences of dilemmas experienced in everyday life with coeliac disease

Few studies have focused on gendered consequences of coeliac disease (CD), despite the fact that women with coeliac disease report lower health-related quality of life than men do. The aim of this study was to explore consequences of dilemmas in everyday lives for women and men, as personally affected by CD or as close relatives to someone affected by the disease and to put these experiences into context regarding household activities. This QUAL-quan study included 28 men and 38 women. A mix method design was used. The critical incident technique that captures, in a structured way, the qualities of experiences was used in interviews to identify dilemmas and their consequences. To describe the social context of these dilemmas, a quantitative questionnaire was developed on food preparations and purchase, as well as on cooking and meal behaviours. The study was approved by the Research Ethics Committee of the Faculty of Health Sciences. The consequences were found in cognitive, social, emotional and physical aspects of human life. The overall pattern of these consequences was similar in women and men irrespective of being personally affected or a close relative. The main consequences identified were: daily concerns about gluten, constant preparation, being different, emotional pressure and body sensations because of CD. Descriptive data extracted from the questionnaire showed that women and men reported having a different social situation in relation to preparing food, making decisions about purchases, buying food products and preparing meals. The clinical implications of these findings are that healthcare professionals need to develop family-oriented information in relation to CD. It is necessary to inform the close relatives irrespective of sex of the possible consequences of the disease and to take in to account the different social context that women and men report in relation to food preparations.

Participation in work in early rheumatoid arthritis: a qualitative interview study interpreted in terms of the ICF

Abstract Purpose: To explore what work-related dilemmas are experienced by patients with early rheumatoid arthritis (RA), according to their own descriptions, and to interpret this in terms of participation categories of the International Classification of Functioning, Disability and Health (ICF). Method: In 48 patients with early RA, qualitative interviews were analyzed, followed by linking of concepts to the activity/participation component of the ICF and interpretation of general themes. Results: Work-related dilemmas represented different societal perspectives on work related to acquiring, keeping and terminating a job, self-employment, part-time, full-time and non-remunerative employment. Dilemmas also represented participation priorities in economic self-sufficiency, self-care such as health care, and avoiding social relationships and recreation in favor of work. Leisure time was influenced because efforts of working took energy and time of day-to-day procedures. Embedded actions in work-related dilemmas were carrying out daily routine, mobility including using transportation, self-care, domestic life and social interaction. Conclusion: The general themes societal perspectives, participation priorities and embedded actions, with the included ICF categories that are described in detail according to the experiences of the patients, can support clinical reasoning and research on quantitative relations to disease activity, body functions, ability and contextual factors. Implications for Rehabilitation In early rheumatoid arthritis, keeping a job is complex; patients and practitioners need to know and handle the perspectives of, e.g. employers and social insurance agents. Participation in work is an issue of prioritizing against, e.g. maintaining ones health and social relationships. Rehabilitation practitioners need to analyze what actions are embedded in a work situation.

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.

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.

YOUNG ADULTS’ EXPERIENCES WITH NEAR-INJURY SITUATIONS: A CRITICAL INCIDENT STUDY IN SWEDEN

As injuries are the main health threat for young adults (18–29 years) in industrial countries, a better understanding of injury risk is needed for this population. Using the Critical Incident Technique, this study explores how young people experience situations that have the potential to cause physical injury (i.e., near-injury situations). Clearly, understanding how and why near-injury situations arise can be used to develop strategies to help prevent severe injury. Content analysis was used to categorize the characteristics of the experiences into unexpected risk in ordinary tasks , duty first , and price for learning . Young adults’ exposures to new or unusual environmental conditions, especially in unexpected risk in ordinary tasks, should be considered when planning injury prevention strategies. A combination of individual, social, and contextual demands and expectations was identified in both work- and sports-related experiences with near-injury situations. The price for learning, which arises from the added risk involved in learning situations, is another condition that was identified and requires further attention. The Critical Incident Technique proved to be a useful method for identifying near-injury situations that might otherwise have been difficult to recall. Young adults’ efforts to display their ability to handle difficult situations at work and in their everyday lives was identified as a major contributor to near-injury situations.

SAT0649-HPR Women with Early RA Prefer To Use Interaction and Adjustment Strategies To Deal with Their Everyday Life Dilemmas: The Tira Project)

Background Due to advancements in medications and treatment, many patients with rheumatoid arthritis (RA) have high expectations of maintaining health, even though they still report participation restrictions in daily life. More women than men RA are affected and women have higher disease activity and more disability than men. Thereby there is a need for further exploration of womens perspective in order to provide tailored multi professional interventions. Objectives The aim of this study was to explore RA womens strategies for dealing with the dilemmas in everyday life. Methods The data collection was conducted with semi-structured interviews based on the Critical Incident Technique (CIT) [1]. The sample consists of women with early RA (n=35). The strategies for dealing with RA dilemmas of everyday life were analyzed and categorized using content analysis [2] and linked to the International classification of functioning, disability and health (ICF) domains [3]. This study is part of a longitudinal RA project approved by the Research Ethics Committee at Linkoping University (M168–05 T84–09). Results The women with early RA described four types of health strategies; interaction, adjustment, avoidance and acceptance. The interaction strategy was most frequently used, however often in combination with adjustment or avoidance strategies. The interaction strategy included to verbally express needs and wants and to interact with others. More easily said, to talk about the problem. In the adjustment strategy new behaviors and habits were developed to deal with the experienced participation restriction or the everyday life dilemma. The avoidance strategy included to deliberate avoid possible participation restrictions, and the acceptance strategy was identified by utterances that included descriptions of accepting the experienced situation or restriction. The everyday dilemmas experienced where related to several of ICF domains such as dressing, eating, drinking, driving, preparing meals, formal and informal relationships, interpersonal interactions and family relationships, employed work, and in leisure activities. Conclusions Women with early RA used combined health strategies to deal with everyday life dilemmas and participation restrictions. Especially the interaction strategy was preferred which could be argued to be an important facilitator for communication within health promotion initiatives and in rehabilitation. This highlights the importance of that health professionals, colleagues, family members and other persons in the social environment listen to womens articulations in order to support and decrease womens participation restrictions in early RA. References Flanagan C. The critical incident technique. Psychol Bull 1954; 51:327–358. Patton M. Qualitative research & evaluation methods. Thousand Oaks, CA: Sage Publications; 2002. World Health Organization. (2001). ICF: international classification of functioning, disability and health. WHO. Geneva. Disclosure of Interest None declared

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