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.

How are the activity and participation aspects of the ICF used? Examples from studies of people with intellectual disability.

INTRODUCTION: Interdisciplinary differences regarding understanding the International Classification of Functioning, Disability and Health (ICF) concepts activity/participation may hinder its unifying purpose. In the ICF model, functioning (and disability) is described as a tripartite concept: 1) Body structures/functions, 2) Activities, and 3) Participation. Activities refer to an individual perspective on disability that does not tally with the basic structure of social models. OBJECTIVE: To review how activity and participation are actually used in studies of intellectual disability (ID). CONCLUSION: Based on 16 papers, four different usages of activity/participation were found. 1) Theoretical reference to tripartite ICF concept with attempts to use it. 2) Theoretical reference to tripartite ICF concept without actual use of activities. 3) "Atheoretical" approach with implicit focus on participation. 4) Theoretical reference to bipartite concept with corresponding use of terms. The highlighted studies have in common a focus on participation. However, the usage of the term "activity" differs both within and between studies. Such terminology will probably confuse interdisciplinary communication rather than facilitating it. Also, the use of an explicit underlying theory differs, from references to a tripartite to references to a bipartite concept of disability. This paper is focused on ID, but the discussed principles regarding the ICF and interdisciplinary disability theory are applicable to other diagnostic groups within rehabilitation practices.

Simplified bipartite concepts of functioning and disability recommended for interdisciplinary use of the ICF.

PURPOSE: To argue for and propose bipartite concepts of functioning and disability, to tally with the structure of the ICF classification list, concepts of social models and clinical needs. METHOD: The ICF concepts are discussed in relation to the history of ideas regarding disability concepts and the needs for such concepts in interdisciplinary rehabilitation. RESULTS: Bipartite concepts are presented; they refer to actual functioning, simply body functions/structures and participation, including functioning in standardized environments. Participation refers to actually performed "activities", with "activities" simply denoting things that people may do. Bipartite concepts are congruent with the ICF classification and the structure of social models of disability, suitable for clinical and interdisciplinary use and easy to understand. The issue of standardized environments represents a methodological issue rather than the conceptual issue of defining functioning and disability. An individual perspective on activity and activity limitations, i.e. the middle part of the tripartite ICF concept, is somewhat similar to concepts of traditional language that were regarded as too generalizing already in 1912, when the interactional concept of "disability in a social sense" was introduced in rehabilitation practices. CONCLUSION: Bipartite concepts of functioning and disability are recommended for interdisciplinary use of the ICF. IMPLICATIONS FOR REHABILITATION: The ICF classification is useful, but the ICF concept of activities in an individual perspective is confusing. We suggest a use of the term "activities" simply to denote things that people may do and "participation" to denote actually performed activities. Estimations of ability should be explicit about how they are related to environmental factors.

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

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.

Important aspects of participation and participation restrictions in people with a mild intellectual disability.

PURPOSE: This study explored a possibility to assess the concepts of participation and participation restrictions in the International Classification of Functioning, Disability and Health (ICF) by combining self-ratings of the perceived importance with the actual performance of different everyday activities in people with a mild intellectual disability. METHOD: Structured interviews regarding 68 items from the ICF activity/participation domain were conducted (n = 69). The items were ranked by perceived importance, performance and by combined measures. Furthermore, the measures were related to a single question about subjective general well-being. RESULTS: Rankings of performance highlighted about the same items as "important participation", while rankings of low performance addressed quite different items compared with "important participation restriction". Significant correlations were found between subjective general well-being and high performance (r = 0.56), high performance/high importance (important participation) (r = 0.56), low performance (r = -0.56) and low performance/high importance (important participation restriction; r = -0.55). CONCLUSIONS: The results support the clinical relevance of the ICF and the studied selection of 68 items. Although performance only may sometimes be a relevant aspect, knowledge about the relationship between the perceived importance and the actual performance is essential for clinical interventions and for research aiming to understand specific needs regarding participation. IMPLICATIONS FOR REHABILITATION: The concepts of participation and participation restriction are highly relevant in people with a mild intellectual disability. Self-rated performance might be sufficient to assess participation at a group level. In clinical practices, the relationship between the perceived importance and the actual performance of an activity is essential to assess.

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

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.

Emotions related to participation restrictions as experienced by patients with early rheumatoid arthritis: a qualitative interview study (the Swedish TIRA project).

Psychological distress is a well-known complication in rheumatoid arthritis (RA), but knowledge regarding emotions and their relationship to participation restrictions is scarce. The objective of the study was to explore emotions related to participation restrictions by patients with early RA. In this study, 48 patients with early RA, aged 20-63 years, were interviewed about participation restrictions using the critical incident technique. Information from transcribed interviews was converted into dilemmas and linked to International Classification of Functioning, Disability, and Health (ICF) participation codes. The emotions described were condensed and categorized. Hopelessness and sadness were described when trying to perform daily activities such as getting up in the mornings and 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. 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.

International Classification of Functioning, Disability and Health categories explored for self-rated participation in Swedish adolescents and adults with a mild intellectual disability.

OBJECTIVE: To explore internal consistency and correlations between perceived ability, performance and perceived importance in a preliminary selection of self-reported items representing the activity/participation component of the International Classification of Functioning, Disability and Health (ICF). DESIGN: Structured interview study. SUBJECTS: Fifty-five Swedish adolescents and adults with a mild intellectual disability. METHODS: Questions about perceived ability, performance and perceived importance were asked on the basis of a 3-grade Likert-scale regarding each of 68 items representing the 9 ICF domains of activity/participation. RESULTS: Internal consistency for perceived ability (Cronbach's alpha for all 68 items): 0.95 (values for each domain varied between 0.57 and 0.85), for performance: 0.86 (between 0.27 and 0.66), for perceived importance: 0.84 (between 0.27 and 0.68). Seventy-two percent of the items showed correlations >0.5 (mean=0.59) for performance vs perceived importance, 41% >0.5 (mean=0.47) for perceived ability vs performance and 12% >0.5 (mean=0.28) for perceived ability vs perceived importance. CONCLUSION: Measures of performance and perceived importance may have to be based primarily on their estimated clinical relevance for describing aspects of the ICF participation concept. With a clinimetric approach, parts of the studied items and domains may be used to investigate factors related to different patterns and levels of participation, and outcomes of rehabilitation.

Factors related to fatigue in women and men with early rheumatoid arthritis: the Swedish TIRA study.

OBJECTIVE: To study whether there are differences between women and men with regard to the reported level of fatigue, to explore the strength of the relations between fatigue and disease activity, pain, sleep disturbance, mental health, and activity limitation in early rheumatoid arthritis, and to explore the consistency of such findings. DESIGN: Analyses and comparisons of cross-sectional data. SUBJECTS: Two hundred and seventy-six patients, 191 women and 85 men, with early rheumatoid arthritis were included. METHODS: Patients were examined with respect to 28-joint count disease activity score, and disability variables reflecting pain, sleep disturbance, fatigue, mental health, and activity limitation, at follow-ups at 1, 2 and 3 years after diagnosis. RESULTS: Women reported somewhat more fatigue than men. Fatigue was closely and rather consistently related to disease activity, pain and activity limitation, and also to mental health and sleep disturbance. CONCLUSION: Although this study does not permit conclusions to be drawn about causal directions, statistical relationships may be related to clinical conceptions about causation: when disease activity can be significantly reduced by pharmacological treatment this may have a positive effect on fatigue. Specific treatment with respect to the mentioned disability aspects that are related to fatigue is also a clinically reasonable strategy.

Problematic aspects of faecal incontinence according to the experience of adults with spina bifida.

OBJECTIVE: To describe problematic aspects of faecal incontinence according to the experience of adults with spina bifida. DESIGN: Qualitative interview study. SUBJECTS: Eleven adults with spina bifida and bowel problems. METHOD: Semi-structured open-ended interviews and qualitative analysis. RESULTS: Problematic aspects were related to participation in terms of time consumption, communication, social isolation, love and sexuality, and accessibility. Also, to a sense of helplessness in terms of panic and worry, to a sense of shame in terms of impurity, social acceptance and self-image, and to bowel function in terms of decisions about colostomy, voluntary constipation, and changing patterns. CONCLUSION: The results reveal aspects relevant to supporting clinical practice and suggesting issues for questionnaire studies.

The long-term impact of torture on the mental health of war-wounded refugees: findings and implications for nursing programmes.

Today, nurses from many disciplines are expected to provide nursing care to refugees severely traumatized in war and conflict. The general aim of this study was to explore the long-term impact of torture on the mental health of war-wounded refugees. The study group consisted of 22 tortured and 22 nontortured male refugees who had been injured in war. Standardized interview schedules, exploring different background characteristics, and three instruments for assessment of mental health were used: the Hopkins Symptom Checklist, the Post Traumatic Symptom Scale and a well-being scale. The prevalence of psychiatric symptoms was high in both groups. However, there were no significant differences in mental health between the tortured and the nontortured refugees. The patterns of associations between background characteristics and mental health were different in the two groups. The strongest associations with lower level of mental health were higher education in the tortured group and unemployment in the nontortured group. Methodological difficulties in research on sequelae of prolonged traumatization remain. Further studies within the caring sciences can broaden the present understanding of the impact of torture and other war traumas.

The mental health of war-wounded refugees: an 8-year follow-up.

The complex nature of recent wars and armed conflicts has forced many war-injured persons into exile. To investigate their long-term mental health, three instruments for assessing mental health (HSCL-25, PTSS-10, and a Well-Being scale) were presented to 44 war-wounded refugees from nine different countries 8 years after arrival in Sweden. The prevalence of psychiatric symptoms was high and corresponds to findings in previous studies of refugee patient populations. A lower level of mental health was associated with higher education, unemployment, and poor physical health. The findings suggest a high psychiatric morbidity and a need for psychiatric interventions in this refugee group. Methodological issues to be considered in research on sequels of war traumas are discussed.