Rett syndrome: Teenagers' and young adults' activities, usage of time and responses during an ordinary week - a diary study.

Background: Little is known about the everyday life of individuals with Rett syndrome.Aim/Objective: To describe ten participants' (teenagers/young adults) activities during a period of seven days, the time-use, where and with whom the activities were performed and the participants' responses in the form of visible/audible reactions during activities.Material and method: A time-geographic self-administered diary was filled in by 63 informants (parents/support staff) and analysed using the software, DAILY LIFE 2011.Results/Findings: The most frequently reported activities were hygiene/toilet, moving around indoors, eating and getting dressed. Most time was spent in sleeping, daily care, medical health care and travel/transportation. Little time remained for receptive activities, daytime rest, physical, social/creative, communication, school/daily work and domestic chore activities, especially for the young adults. Most time was spent with staff, thereafter with families and the least time was spent with friends. The most reported response was "interested", and "opposed" was the least reported.Conclusions: Daily and medical health care activities were time consuming. Improved communication between all parties may increase participation and well-being and provide solutions for handling unpleasant activities and sedentary time.Significance: A more varied range of activities may improve the everyday life for individuals with Rett syndrome.

Occupational life trajectories in the context of chronic pain and immigration.

BACKGROUND: Persons with chronic pain report a range of occupational problems. The specific health needs of immigrants are judged to be poorly understood, and health systems are not prepared to respond adequately. Being an immigrant is regarded as a risk factor for the progression of chronic widespread pain into a state of disability. OBJECTIVES: To explore occupational life trajectories among immigrant women with chronic pain. MATERIAL AND METHODS: A qualitative content analysis was used to capture the latent meaning of experiences in individual interviews of eight women with immigrant background and chronic pain. RESULTS: An overarching theme, 'making the best of a conditional situation', representing the women's occupational life trajectories, covers the content of two categories: 'being controlled', including affected self-perception, social relations, and future prospects, and 'trying to deal with challenges', comprising a focus on resources, having trust in one's own judgements and getting help from others. CONCLUSION AND SIGNIFICANCE: The experiences demonstrate an occupational life controlled by internal and external factors and may be understood as a disrupted occupational life trajectory. This knowledge may be helpful to occupational therapists supporting immigrant women's attempts to regain a structured life despite the constant presence of pain.

Evaluation of activity limitation and digital extension in Dupuytren's contracture three months after fasciectomy and hand therapy interventions.

STUDY DESIGN: Longitudinal Case Series. INTRODUCTION: Dupytren's contracture is thought to result in digital impairments and performance disabilities. No study to date has focused on how patients with Dupuytren's contracture experience limitations in daily activities and the results after surgery. PURPOSE OF THE STUDY: Describe which activities patients with Dupuytren's contracture defined as the most disabling, how they rated their activity limitations and determine the relationship between activity limitations and digital extension before and three months after surgery and postoperative hand therapy. METHODS: Self-reported rating of activity limitations, performance, and measures of total digital extension. RESULTS: The most disabling activities were with self-care (42%), though overall performance was significantly improved following surgery and postoperative hand therapy. The total digital extension was significantly improved 81 degrees and was positively related to performance. CONCLUSIONS: The results provide new information about activities that patients with Dupuytren's contracture experience as being difficult to perform and describes positive changes in performance and range of motion. LEVEL OF EVIDENCE: 4.

Women with fibromyalgia: work and rehabilitation.

PURPOSE: To explore disability in women with fibromyalgia with a focus on their work situation. METHOD: Review of literature on work status of women with fibromyalgia. RESULTS: Major differences exist between studies in reported disability and in the percentages of women working. Limitations caused by pain, fatigue, decreased muscle strength, and endurance influence work capacity. However, 34 - 77% of the women work. Individual adjustments in the work situation are reported. When the women find a level that matches their ability, they continue to work and find satisfaction in their work role. Many factors besides degree of impairment or disability influence whether clients with longstanding pain can remain in their work role or return to work after sickness leave. CONCLUSION: The total life situation, other commitments, type of work tasks, the ability to influence the work situation, and the physical and psychosocial work environment are important factors in determining whether a person can remain in a work role. More knowledge is needed about how to adjust work conditions for people with partial work ability to the benefit of society and the individual.