Background Good clinical research is often conducted in close collaboration between patients, the public, and researchers. Few studies have reported the development of patient and public involvement (PPI) in research outside the United States and the United Kingdom, and for patients with more aggressive cancers. The study aimed to describe and evaluate the development of PPI in oesophageal cancer survivorship research in Sweden by the use of a framework to support the process. Methods Oesophageal cancer survivors were recruited to a PPI research collaboration at Karolinska Institutet, Sweden. The development process was supported by the use of a framework for PPI, 'Patient and service user engagement in research'. Insights, benefits, and challenges of the process were described and discussed among the collaborators. Results The collaboration resulted in joint publications with a more patient- and family-focussed perspective. It also contributed to the development of information folders about survivorship after oesophageal cancer surgery and national conference arrangements for patients, their families, healthcare workers, and researchers. Since the PPI contributors were represented in patient organisations and care programmes, the dissemination of research results increased. Their contributions were highly valued by the researchers, but also revealed some challenges. The use of a structured framework contributed to support and facilitated the process of establishing PPI in research collaboration. Conclusions A genuine interest in establishing PPI in research and an understanding and respect for the patients' expertise in providing a unique inside perspective was imperative for a successful collaboration. Research focus should not only be on mortality and reductions in daily life, but also on positive outcomes. Using a framework supports development and avoids pitfalls of PPI collaboration. Patient and public contribution Patient partners were equal collaborators in all aspects of the study.

The need to support a healthy lifestyle among the population has become increasingly apparent in recent years. The National Board of Health and Welfare in Sweden has published national guidelines regarding unhealthy lifestyle habits since 2011. An instrument based on the practical and theoretical foundations of occupational therapy was developed to support the profession's unique contribution to implementing these guidelines. The aim was to examine the utility of the instrument by investigating its implementation potential and clinical relevance. Sixteen occupational therapists used the instrument in practice together with 60 clients. Afterwards, they completed a questionnaire covering questions of utility. The instrument demonstrated mostly positive dimensions of utility. The results show that the instrument seems to have a high implementation potential and is clinically relevant. It seems, for example, to support implementation of the national guidelines and to capture how a person's lifestyle habits are expressed in everyday occupations. The instrument further seems to promote people’s participation in treatment. The instrument ‘Diary-based survey of lifestyle habits in everyday activities and support for the process of change’ seems promising in terms of utility. However, the scientific merit of the instrument will need to be further established.

Purpose Esophagectomy for cancer is an extensive procedure often followed by severe complications. This study investigated whether patients with severe symptoms of reflux are more likely to have sleep disturbances and reduced health-related quality of life (HRQL) after esophagectomy. Methods This Swedish nationwide prospective cohort study encompassed all patients who had undergone esophagectomy for cancer between 2013 and 2018. One year after surgery, the patients responded to three questionnaires on reflux (EORTC QLQOG25), sleep disturbances (KSQ), and HRQL (EORTC QLQ-C30). Multivariable logistic regression provided odds ratios (OR) with 95% confidence intervals (CI) for sleep disturbance/reduced HRQL between patients with and without reflux, adjusted for potential confounders. Results Among 241 esophagectomy patients, 66 (27%) reported severe reflux. Patients with reflux had an increased risk of sleep disturbances (OR 2.3, 95% CI: 1.3–4.3) compared to patients without reflux. More specifically, these patients were more likely to suffer from poor sleep quality (OR 4.9, 95% CI: 1.9–12.4). Patients with reflux and sleep disturbances reported reductions in global quality of life, role function, emotional function, social function, and more symptoms in all scales, except for dyspnea. Conclusions This study suggests that patients with severe symptoms of reflux after esophagectomy have an increased risk of sleep disturbances and poor sleep quality, which in turn are associated with reduced HRQL. Implications for Cancer Survivors Alleviating reflux after oesophageal cancer surgery is important, since this common symptom might reduce HRQL and well-being.

Occupational therapists in Sweden are expected to use evidence-based practice. To meet this expectation, a helpful tool could be the Model of Human Occupational Screening Tool (MOHOST). The aim of this study was to examine the utility of the Swedish version of MOHOST. Thirty-seven occupational therapists were invited to take part in the examination. A questionnaire covering transferability, feasibility and clinical relevance was developed. The results show that MOHOST-S seems to have suitable utility. The study supports its implementation potential and clinical relevance. It gives a broad picture of the client's occupational participation and it supports the treatment planning process.

Background: Fatigue is common among people with multiple sclerosis (MS), and significantly influences engagement in occupations. The Managing Fatigue (MF) programme is an evidence-based occupational therapy group-based intervention, utilising self-management science that provides people with tools to manage fatigue. Although the national MS-guidelines in Sweden cite this as best practice, a Swedish version is not available.Aim: To translate and investigate the feasibility of a Swedish MF programme delivered by occupational therapists working with MS clients in Sweden.Material and methods: We used a mixed-methods design. Eight recruited occupational therapists, participated in a workshop prior to delivering the MF programme. Following programme delivery, they completed a questionnaire and participated in focus group interviews.Results: Each therapist conducted one programme with 5–9 MS clients. Overall, therapists were satisfied with programme content, and delivery was followed. Minor improvements were suggested, specifically in relation to how cognitive fatigue can be managed. Therapists acknowledged challenges moving from "expert" to supporting self-management.Conclusion: The MF programme is feasible in Sweden, and its client-centred and occupation focus is consistent with therapists' scope of practice. In the future, acceptability and satisfaction from the perspectives of MS participants should be examined. Larger, more robust intervention studies evaluating effectiveness are also warranted.

The presented MOHO intervention methods; strategies and interventions, for facilitating change has not been investigated in practice in Sweden. MOHO is often seen as an assessment model. Many asses ...

Introduction: Around 80% of all people with multiple sclerosis (MS) experience MS-fatigue, significantly impacting everyday occupational performance. The Fatigue Management course (FMC) is an evide ...

Date Presented 4/7/2016 Translation guidelines for the Role Checklist Version 2: Quality of Performance are evaluated for feasibility and utility to produce valid translated assessments in Icelandic and Mandarin. Valid translations can reveal important trends in international role participation. Primary Author and Speaker: Leah Van Antwerp Additional Authors and Speakers: Jeffrey Crabtree, Patricia Scott Contributing Authors: Kristjana Fenger, Lena Haglund, Fengyi Kuo

Introduction The Assessment of Communication and Interaction Skills, which is based on the Model of Human Occupation, is used when observing a client’s skills to communicate and interact with others while performing an occupation. The utility and psychometric status of an assessment is critical for treatment planning in occupational therapy. The aim of the current study was to examine the utility of the Swedish version of the Assessment of Communication and Interaction Skills from the perspective of occupational therapists working in the field of mental health, considering its clinical relevance and potential for implementation. Method Eight occupational therapists performed 116 assessments. Most of the 58 clients had affective or anxiety disorders. Descriptive and qualitative analysis were performed. Results In 76% of the assessments, the occupational therapists perceived that they had obtained a deeper knowledge of the client’s communication and interaction skills. This supports the clinical relevance of the assessment. Concerning the implementation potential and time required for using the assessment, all occupational therapists considered it reasonable. Conclusion The Swedish version of the Assessment of Communication and Interaction Skills is appropriate to use in the field of mental health for supporting occupational therapists in the treatment planning process.

The aim of this study was to describe recovering over time in occupational performance and in affective symptoms for patients with depression disorder by using different assessments and methods for collecting data. A longitudinal design with data collections on repeated occasions was used. The Occupational Circumstances Assessment Interview and Rating Scale and Occupational Self-Assessment were used for measuring occupational performance, and for affective symptoms, a Comprehensive Psychopathological Rating Scale Self-Assessment was used. Fourteen patients with depression disorder were included in the study. The result indicates that affective symptoms improve earlier than occupational performance. Furthermore, self-assessment seems to reflect more improvement to the patient than interview-based assessment. Different kinds of assessment and different kinds of data collection methods seem to facilitate the understanding of the patients recovering. In addition habituation was the most important item for the patients to manage. One implication for practice is that patients may need an extended period of treatment supporting occupational performance.

Background: Among the Model of Human Occupation (MOHO) assessments, the Role Checklist is one of the most established. In spite of its widespread use, no studies have examined role examples and their association with the three embedded levels of doing, as established in the MOHO theory. Method: A cross-sectional survey of 293 respondents from the US, the UK, Japan, Switzerland, Sweden, and Norway produced 7,182 role examples. The respondents completed Part I of the Role Checklist and provided examples of each internalized role they performed. Responses were classified as occupational skill, occupational performance, or occupational participation. Results: Thirty-three percent of the examples were classified as examples of occupational participation, whereas 65% were classified as examples of occupational performance. Four roles linked mostly with occupational participation, another four roles linked mostly with occupational performance, and the two remaining roles were mixed between occupational participation and occupational performance. Discussion: The Role Checklist assesses a person’s involvement in internalized roles at the level of both occupational participation and occupational performance. There are differences among countries with regard to how roles are perceived and exemplified, and different roles relate differently to the occupational performance and occupational participation levels of doing. There are related implications for occupational therapists.

Background: Attention-deficit hyperactivity disorder (ADHD) in adults is a phenomenon that attracts a lot of attention in society today. Advances in research have made it clear that many conditions that make people seek medical and psychiatric care may have pervasive deficits in attention, motor control and impulsivity at their roots. Since ADHD in adults is a relatively new and very versatile concept, there is a great need for systemized classification of the ramifications of the deficit that extends into every aspect of these patients' lives. Aims: To develop a Swedish Comprehensive International Classification of Functioning, Disability and Health (ICF) Core Set for adult patients with ADHD. Methods: A national expert survey was conducted using the Delphi technique and a formal consensus conference. Forty-two experts from different professions and organizations, including psychiatrists and physicians, psychologists, occupational therapists, a counsellor, a specialist nurse, representatives from a patient organization and representatives from the Swedish Social Insurance Agency, participated in the Delphi process and 28 participants from the expert group attended the consensus conference. Results: At the formal consensus conference, 66 categories from the ICF were identified and included in the national Comprehensive Core Set for ADHD: 21 categories from the component body functions, 26 categories from the component activities and participation, and 19 categories from the component environmental factors. Conclusion: The Comprehensive Core Set for ADHD should be regarded as national and preliminary, and should be further tested and evaluated by experts in ADHD in clinical settings in Sweden.

Aim: This paper reports the measurement properties of the Occupational Circumstances Assessment Interview and Rating Scale - Sweden (OCAIRS-S V2). The OCAIRS is a semi-structured interview and rating scale designed to capture, in detail, a person's occupational participation. The English version 4.0 has been translated into Swedish. The psychometric properties of the Swedish version are unknown. Methods: Eleven Swedish occupational therapists working in mental health completed 38 OCAIRS-S (V2) assessments in addition to linking videotapes. A total of 60 clients were, therefore, entered into the analysis. Many-faceted Rasch analysis was used to analyse the data. Results and conclusions: Results supported internal, construct, and person response validity of the OCAIRS-S (V2). Inter-rater reliability was established. The scale was shown to discriminate between people who were living in the community. In addition, the results indicate a need to explore the skill items.

OBJECTIVE:To develop a self-report alternative to the Work Environment Impact Scale (WEIS).PARTICIPANTS:First the novel instrument was used and evaluated by ten occupational therapists and 45~clients in primary health care. Then the instrument was used by 26~clients who participated in a rehabilitation programme in another primary health care district.METHODS:The instrument was investigated in two steps. First content validity and utility were investigated through a questionnaire addressed to occupational therapists and their clients respectively. The response distribution was calculated by frequencies. Internal consistency was investigated. In the second step, a revised version of the instrument was investigated for test-retest reliability and internal consistency. The test-retest reliability was calculated by weighted kappa. The internal consistency of the WEIS-SR was calculated by means of Cronbach's alpha.RESULTS:In step one the content validity was good to moderately good, the utility was good, and the internal consistency was satisfactory (0.72). In step two the internal consistency was good (0.88/0.89) and the test-retest reliability was mostly good to moderate (0.35-0.78, median 0.61).CONCLUSIONS:The instrument will be further investigated in other populations and take into consideration additional psychometric properties such as sensitivity to change, predictive validity, and concurrent validity.

Introduction: The aim of this exploratory study was to discover if a fifth qualifier in the domain of Activity and Participation in the International Classification of Functioning, Disability and Health (ICF) could highlight the experience of satisfaction and enjoyment in the everyday life of people with severe mental illness. It also investigated the correlation between the assessment made by an occupational therapist and nursing staff based on performance, and the assessment made by the clients themselves. Method: Twenty-nine clients with schizophrenia or other forms of psychosis participated, using a self-assessment. The performance was investigated by using the first qualifier in the ICF, domain Activity and Participation. Findings: The ‘Major life area’ was rated with the most dissatisfaction and displeasure by the clients. ‘Communication’ and ‘General task and demands’ also had low ratings. ‘Self-care’ was rated with the most satisfaction and enjoyment. There was a correlation between the assessments made by the occupational therapist and the nursing staff, but their assessments differed from those made by the clients. Conclusion: The study indicates the importance of using self-assessment when understanding everyday life as presented in the ICF, and the importance of using different assessment methods to gain a broad picture of clients.