Gunnel Östlund

‘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.

Capacity to work while depressed and anxious--a phenomenological study.

Abstract Purpose: The aim was to explore experiences of capacity to work in persons working while depressed and anxious in order to identify the essence of the phenomenon capacity to work. Method: Four focus groups were conducted with 17 participants employed within the regular job market. Illness experiences ranged from symptoms to clinical diagnoses. A phenomenological approach was employed. Results: The phenomenon of capacity to work was distinguished by nine constituents related to task, time, context and social interactions. The phenomenon encompassed a lost familiarity with one’s ordinary work performance, the use of a working facade and adoption of new time-consuming work practices. Feelings of exposure in interpersonal encounters, disruption of work place order, lost “refueling” and a trade-off of between work capacity and leisure-time activities was also identified. The reduced capacity was pointed out as invisible, this invisibility was considered troublesome. Conclusions: A complex and comprehensive concept emerged, not earlier described in work capacity studies. Rehabilitation processes would benefit from deeper knowledge of the individual’s capacity to work in order to make efficient adjustments at work. Results can have particular relevance both in clinical and occupational health practice, as well as in the workplaces, in supporting re-entering workers after sickness absence. Implications for Rehabilitation The reduced capacity to work due to depression and anxiety is not always understandable or observable for others, therefore, the rehabilitation process would benefit from increased knowledge and understanding of the difficulties afflicted individuals experience at work. Identifying tasks that contribute to “refueling” at work might enhance the success of the rehabilitation. Rehabilitation programs could be tailored to better address the inabilities that impact on the capacity to work when depressed and anxious.

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.

Thai men's experiences of alcohol addiction and treatment

Background Men are overrepresented with regard to alcohol addiction and in terms of alcohol treatment worldwide. In Thailand, alcohol consumption continues to rise, but few of those afflicted with alcohol addiction attend alcohol treatment programs, even though there is universal care for all. No comprehensive studies have been done on mens experiences with addiction and alcohol treatment programs in Thailand. Objective The aim of this study was to explore mens experiences in terms of the ‘pros and cons of alcohol consumption’ in order to identify the barriers that exist for Thai men with regard to alcohol addiction and the decision to stop drinking. Design Purposive sampling was applied in the process of recruiting participants at an alcohol clinic in a hospital in Thailand. Thirteen men with alcohol addiction (aged 32–49 years) were willing to participate and were interviewed in thematic interviews. The analysis of the data was done with descriptive phenomenology. Results Through mens descriptions, three clusters of experiences were found that were ‘mending the body’, ‘drinking as payoff and doping related to work’, and ‘alcohol becoming a best friend’ as ways of describing the development of addiction. Conclusions The results highlight the importance of addressing concepts of masculinity and related hegemonic ideas in order to decrease the influence of the barriers that exist for Thai men with alcohol addiction with regard to entering treatment and to stop drinking.

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.

Barriers to successful treatment of alcohol addiction as perceived by healthcare professionals in Thailand – a Delphi study about obstacles and improvement suggestions

Background Many Thai people experiencing alcohol addiction do not seek help, and those who do often have inadequate access to treatment. There are few research studies focusing on alcohol addiction treatment in Thailand. Objective The purpose of the current study was to identify barriers to the treatment of alcohol addiction and to collect experts’ suggestions for improving treatment in Thailand. The Delphi technique was used to achieve consensual agreement among an expert panel within the field of alcohol addiction and treatment. Design Three rounds of a Delphi survey were completed by a panel of experts in alcohol addiction, including physicians, nurses, social workers, psychologists, healthcare officers, and an Alcoholics Anonymous member. The open-ended answers provided by 34 experts in the first round resulted in 60 statements, which were later grouped into three themes. After three rounds of questionnaires, 51 statements were accepted as consensus. Results Thirty-two experts participated in all three Delphi rounds. Over 80% of participants were particularly concerned about five obstacles to alcohol addiction treatment. The majority of suggestions from the expert panel were related to patients’ right to treatment and the national policy for reducing the negative effects of alcohol. According to the results of the present study, the experts suggested that the treatment of alcohol addiction should be continuous from primary care to tertiary care, and convenient pathways should be established in healthcare services. The experts would also like to increase the number of healthcare providers and improve their knowledge and skills in working with people experiencing alcohol addiction. Conclusions Equal rights to health and treatment for people experiencing alcohol addiction in Thailand require policy improvements, as well as acceptance and awareness of alcohol addiction from both the public and policymakers.

Broken dreams of a better life in Sweden: Thai women’s lived experiences of intimate partner violence by Swedish men in international marriages

ABSTRACT Background: Intimate partner violence by men against women has detrimental effects on equality, health and integration. Migrated and ‘imported’ wives experience an increased risk of intimate partner violence. Objectives: The purpose of this study was to explore Thai immigrant women’s lived experiences of intimate partner violence in Sweden. Method: Semi-structured interviews based on the critical incident technique with specific questions about experiences of male-to-female intimate partner violence were used to collect data. The participants were Thai immigrant women who had lived in Sweden for more than five years. Qualitative content analysis was used to identify patterns and variations in the transcribed data material. Results: Eighteen interviewees reported psychological, physical, economic and/or sexual violence in their international marriages. These Thai women described being faithful and silent and reliable housewives. However, this did not keep them from being replaced and losing dignity as a result of intimate partner violence, including experiencing broken dreams and deception. Although their dreams were broken, they did not give up their efforts to achieve better lives in Sweden. Conclusions: The vulnerability of imported wives in international marriages needs to be further recognised by health and welfare agencies in Sweden, as elsewhere, to ensure that these women have equal access to human rights, welfare and health as other citizens. From a health promotion perspective, home-based health check-ups are needed to stop the exploitation of imported wives. In Thailand, information and education about the unrecognised negative conditions of the Mia farang role (Imported wife role) need to be disseminated.