Search

In this article, we present findings from a qualitative study examining how young women experience being long‐term bedridden with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), during childhood and adolescence. The aim is to explore how young women who fell ill with ME/CFS during childhood and adolescence look back on their lived experience of being long‐term bedridden from the vantage point of being fully or partially recovered. Informed by a phenomenological theoretical perspective, the researchers applied a narrative methodological approach involving the analysis of interviews with 13 women, aged 16–29 years at the time of the interview. Attention was particularly paid to how participants structured their narratives and to the events (telling moments) they identified as important. Four major storylines were developed: Ambivalent responses to the presence of others; A body on the edge of life; An eternity in the dark; and Recasting painful memories of being bedridden and alone. Based on our findings, we argue that the experience of being long‐term bedridden with ME/CFS during childhood and adolescence can be understood and communicated as a plot in which individuals find themselves pushed to the extreme limit of suffering and loneliness. [ABSTRACT FROM AUTHOR]

Purpose: To explore the recovery narratives of 13 young women who had fallen ill with severe Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), during childhood and adolescence, with the focus on what they had to say about their past experiences from the perspective of the present. Method: A qualitative narrative approach, informed by a phenomenological theoretical perspective, was adopted to explore what the women found significant and meaningful in their recovery process. Data analysis of in-depth narrative interviews was performed which are presented to readers through the stories of two particular participants. Results: The first story describes how one participant made a recovery by testing her body's tolerance and working to create a more confident self. The second story describes a complex exploration of possibilities for action in recovery, along with a struggle to make sense of setbacks and hold on to what has been gained. Conclusion: Recovering from ME/CFS emerges as an inter-personal, contextual, fragile and nonlinear process of homecoming, based on gradually rising bodily based self-knowledge. Illness slowly fades away into the background, and there is the prospect of a healthier tomorrow. [ABSTRACT FROM AUTHOR]

Objective This study investigated the validity, reliability, responsiveness, and interpretability of the Patient-Specific Functional Scale (PSFS) in subacute stroke rehabilitation to determine its suitability to measure patient-identified rehabilitation goals. Methods A prospective observational study was designed according to the checklist from Consensus-Based Standards for Selecting Health Measurement Instruments. Seventy-one patients diagnosed with stroke were recruited in the subacute phase from a rehabilitation unit in Norway. The International Classification of Functioning, Disability and Health was used to assess the content validity. Assessment of construct validity was based on hypotheses for correlation of the PSFS and comparator measurements. We assessed reliability by calculating the Intraclass Correlation Coefficient (ICC) (3.1) and the standard error of measurement. The assessment of responsiveness was based on hypotheses for the correlation of change scores between the PSFS and the comparator measurements. A receiver operating characteristic analysis was conducted to assess responsiveness. The smallest detectable change and minimal important change were calculated. Results Eighty percent of the PSFS items were classified as activities and participation in the International Classification of Functioning, Disability and Health, indicating satisfactory content validity. The reliability was satisfactory with an ICC of 0.81 (95% CI = 0.69–0.89). The standard error of measurement was 0.70 point, and the smallest detectable change was 1.94 points. Five of 7 hypotheses were confirmed for construct validity, and 5 of 6 were confirmed for responsiveness, indicating moderate construct validity and high responsiveness. Assessing responsiveness with a criterion approach resulted in an area under the curve of 0.74. A ceiling effect was identified for 25% of the participants 3 months after discharge. The minimal important change was estimated to be 1.58 points. Conclusion This study demonstrates satisfactory measurement properties for the PSFS in individuals undergoing inpatient stroke rehabilitation. Impact This study supports the use of the PSFS to document and monitor patient-identified rehabilitation goals in patients receiving subacute stroke rehabilitation when applied using a shared decision approach. [ABSTRACT FROM AUTHOR]

While many persons who sustain a mild traumatic brain injury (MTBI) can resume work shortly after their injury, some experience persisting symptoms leading to longer-term sickness absence. In-depth knowledge about how these persons experience the return to work (RTW) process is needed. To explore how persons with MTBI experience the process of returning to ordinary competitive work after a prolonged period of sickness absence. Semi-structured interviews were conducted with six persons (four women) approximately 12 months after sustaining an MTBI. Data were analysed using a stepwise-deductive inductive method. When starting work the participants experienced a crisis. They described the importance of making the actual decision to RTW. Being present at the workplace was significant. In the process of increased workload, they expressed having challenges related to time perception and capacity restrictions. The importance of being seen and valued was emphasised. When reintegrated into the workplace revaluing work tasks and priorities shaped the RTW process as well as a further professional career. The process of RTW contained the experience of unpredictability and incompatibility with own identity and performance. Working had an impact on social participation, self-worth, daily structure, as well as reconstructing occupational biography. [ABSTRACT FROM AUTHOR]

To (1) identify interventional research topics in traumatic brain injury (TBI) rehabilitation, (2) describe potential knowledge gaps, and (3) uncover further needs for interventional TBI rehabilitation research for patients and families. We searched three databases (2006–2019) and screened 1552 non-duplicate articles. Titles and abstracts were screened for relevance, yielding 754 articles for full-text review. Of these, 425 were included, as relevant to the purpose of the scoping review. Among articles on TBI rehabilitation, the majority (71.8%) applied quantitative methodology; of these only 19.7% were randomized controlled trials. Severe TBI was described more often than mild/moderate TBI populations. Hospital vs community/home rehabilitation was 55.1% vs 37.2%; rehabilitation at workplace/school was described in only 4.5% articles, while in 7.2% the setting was undisclosed. Of 83 articles describing work/education, only 14 were in a work/school context. An additional focus in the work/education articles was activities of daily living (n = 28), cognition (n = 33) and emotions (n = 23), few targeted family or network. The main attention of interventional TBI rehabilitation studies has been on severe TBI and long-term rehabilitation. Gaps identified were rehabilitation of mild/moderate TBI populations, older populations, acute/sub-phase rehabilitation, return to work issues and studies including the family. A substantial number of interventional studies exist to guide long-term rehabilitation after traumatic brain injury with focus on daily life, physical, emotional and cognitive functioning. We recommend a stronger focus in the clinic on the following groups; people with mild/moderate traumatic brain injury, people in the acute and sub-acute phase, and older people with traumatic brain injury. Issues that target challenges returning to work should be addressed, while they are of importance to patients and families. Emphasis should be put on continuity of care and peer-support. [ABSTRACT FROM AUTHOR]

Objective: To evaluate the effect of a dialogue-based intervention targeting psychosocial well-being at 12 months post-stroke. Design: Multicenter, prospective, randomized, assessor-blinded, controlled trial with two parallel groups. Setting: Community. Subjects: Three-hundred and twenty-two adults (⩾18 years) with stroke within the last four weeks were randomly allocated into intervention group (n = 166) or control group (n = 156). Interventions: The intervention group received a dialogue-based intervention to promote psychosocial well-being, comprising eight individual 1–1½ hour sessions delivered during the first six months post-stroke. Main measures: The primary outcome measure was the General Health Questionnaire-28 (GHQ-28). Secondary outcome measures included the Stroke and Aphasia Quality of Life Scale-39g, the Sense of Coherence scale, and the Yale Brown single-item questionnaire. Results: The mean (SD) age of the participants was 66.8 (12.1) years in the intervention group and 65.7 (13.3) years in the control group. At 12 months post-stroke, the mean (SE) GHQ-28 score was 20.6 (0.84) in the intervention group and 19.9 (0.85) in the control group. There were no between-group differences in psychosocial well-being at 12 months post-stroke (mean difference: −0.74, 95% confidence interval (CI): −3.08, 1.60). The secondary outcomes showed no statistically significant between-group difference in health-related quality of life, sense of coherence, or depression at 12 months. Conclusion: The results of this trial did not demonstrate lower levels of emotional distress and anxiety or higher levels of health-related quality of life in the intervention group (dialogue-based intervention) as compared to the control group (usual care) at 12 months post-stroke. [ABSTRACT FROM AUTHOR]

Background: Ongoing changes in healthcare delivery systems in Norway increasingly require community-based services, and the changes will likely affect the working conditions and opportunities for occupational therapists. Aim: To characterize occupational therapy in community-based practice in Norway. Material and methods: A cross-sectional, descriptive survey design was applied using a questionnaire related to personal and organizational characteristics. Participants (n = 561) were recruited among community-working occupational therapists in Norway registered as members of Ergoterapeutene. Data were analyzed with descriptive statistics. Results: The majority of the participants was female and had an average of 16.5 years of professional experience. They reported to spend about half of their working hours on direct work with clients. For many, work with assistive technology was a main task, accounting for approximately half their working hours. Only a small proportion worked in municipalities that had merged with others, but for a larger proportion (27%) a merger had been decided and was in preparation. Conclusion: This study established some basic information regarding Norwegian community-based occupational therapy and the municipalities where occupational therapists work. Significance: With this study serving as a baseline, we may be able to track how changes will affect community-based occupational therapy practice in the near future. [ABSTRACT FROM AUTHOR]

As enrollment numbers grow in occupational therapy academic programs in Norway, the need for more fieldwork placements and supervisors increases. More knowledge about factors of importance for occupational therapists' decisions to take on the role of fieldwork supervisor may promote easier access to supervisors who are ready for the task, and it may assist in addressing the barriers for those who are not. We recruited a sample of 561 community-working occupational therapists for an electronic survey conducted in 2017. Quantitative survey responses were obtained and used in the current study. The differences between supervisors and non-supervisors were examined with independent ttests and Chi Square tests. To assess factors associated with serving as a supervisor, a multivariate logistic regression analysis was conducted. One hundred fifty-six participants (27.8%) had served as a fieldwork supervisor during the preceding year. The adjusted analysis showed that having a job physically located together with other occupational therapists was significantly associated with increased odds for serving as supervisor (OR:1.79, 95% CI:1.17-2.74, p < 0.01). A minority of the participants had supervised occupational therapy students during the preceding year, suggesting that community-based services are an under-used arena for occupational therapy students' fieldwork. In a long-term perspective, providing social and organizational support for occupational therapists who might take on student supervision may increase their willingness and opportunity to do so. [ABSTRACT FROM AUTHOR]

Purpose:To explore traumatic brain injury (TBI) as a biographical disruption and to study the reconstruction of everyday occupations and work participation among individuals with mild TBI. Methods:Seven focus groups were conducted with 12 women and 8 men (22–60 years) who had sustained mild TBI and participated in a return-to-work program. Interviews were analyzed using qualitative content analysis. Results:Four interrelated themes emerged: disruption of occupational capacity and balance; changes in self-perceptions; experience of time; and occupational adjustment and reconstruction. The meaning of the impairments lies in their impact on the individual’s everyday occupations. The abandonment of meaningful daily occupations and the feeling of not recognizing oneself were experienced as threats to the sense of self. Successful integration of the past, present and future was paramount to continuing life activities. The unpredictability of the future seemed to permeate the entire process of adjustment and reconstruction of daily life. Conclusions:Our findings show that the concept of time is important in understanding and supporting the reconstruction of daily life after TBI. The fundamental work of rehabilitation is to ameliorate the disruptions caused by the injury, restoring a sense of personal narrative and supporting the ability to move forward with life.Implications for RehabilitationIndividuals with a protracted recovery after a mild traumatic brain injury must reconstruct a new way of being and acting in the world to achieve biographical continuity.The perceived anxiety regarding changes in self and occupational identity, as well as loss of control over the future, can be attenuated through informational sessions during the hospital stay and at follow-up visits.The significant personal costs of returning to full-time employment too early indicate the need for early and ongoing vocational support in achieving a successful return to work. [ABSTRACT FROM PUBLISHER]

Objective: The aim of the study was to develop a group-based self-management programme for individuals with chronic fatigue syndrome (CFS) by using the participants' experiences with the initial version of the programme, which intends to promote coping with the illness in a primary healthcare setting. Methods: An initial programme was developed, based on self-efficacy theory and the concepts of client-centred practice and empowerment. Subsequently, the programme was tested and further developed by drawing on the participants' experiences with the programme. Focus-group interviews were applied. The interviews were analysed using thematic analysis. Results: The initial programme was found to be feasible, although several modifications regarding the content and practical organization of the programme were proposed. Conclusion: In line with the participants' experiences, the final self-management programme was developed, which includes short presentations of eight topics, exchange of experiences among participants, goal-setting, construction of action plans, and relaxation exercises, in addition to a meeting for relatives. The programme will be provided in eight biweekly sessions and be led by juxtaposed peer counsellors and occupational therapists. The effects of the final programme will be evaluated in a randomized controlled trial. [ABSTRACT FROM AUTHOR]

Background: Older adults with mild to moderate stroke or transient ischaemic attack often experience anxiety, depression and reduced social participation in their daily lives. Interventions addressing the long-term consequences of stroke are needed. Objective: To describe the process of developing a person-centred lifestyle intervention for older adults with stroke. Methods: The Canadian Occupational Performance Measure was used to develop the content of the intervention. Lifestyle groups were implemented at senior centres once a week for nine months. Content analysis was used to analyse the intervention content. Results: A total of 132 participants (median age 79 years, 55% women, 52% lived alone) were recruited from hospitals. The participants prioritized 392 occupational problems, mainly related to active recreation, household and community management, mobility, and socialization. The occupational issues were addressed in the group interventions. New themes also emerged in line with the participants' choices through group discussions, such as information on stroke and prevention of new strokes, outdoor mobility and transportation, 'brain use' and memory. Conclusion: The study demonstrates the development of intervention following stroke, addressing its process, structure, and components. Whether the person-centred process increases the potential for enhancing participants' social participation and well-being should be evaluated in future studies. [ABSTRACT FROM AUTHOR]

Patients with physical traumatic injuries frequently require long-term rehabilitation services. To strengthen rehabilitation services in the postacute phase, we need to assess characteristics of this population and their healthcare and rehabilitation needs in the community. This brief report summarizes the frequency of unmet rehabilitation needs in community-based rehabilitation during the first year aftermoderate and severe trauma. Additionally, the associations between sociodemographic, injury severity factors and unmet needs were examined. Data from a prospective multicenter cohort study of patients with moderate and severe trauma (New Injury Severity Score > 9) of all ages, discharged alive from two regional trauma centers in 2020 were used. Needswere estimated using the Needs and Provision Complexity Scale. Overall, 46% of patients had unmet needs at 12-mo postinjury, particularly related to the provision of rehabilitation services, specialist followups, and social and family support. The probability of unmet needs was associated with age, preinjury comorbidities, and impaired functioning. Our findings support strategies targeting younger patients, those with preinjury comorbidities, and those with higher levels of disability and provide a starting point for the development of standardized rehabilitation needs assessment and guidelines after injury. [ABSTRACT FROM AUTHOR]

Abstract: Recruitment and retention of participants in randomized controlled trials (RCTs) drawn from the older population is challenging, and studies have shown that poor recruitment and retention may lead to biased samples and results. Several strategies to improve the participation of older adults in research are outlined in the literature. The objective was to identify factors associated with participation in an RCT aiming at preventing depressive symptoms and social isolation in a later phase following a stroke, in an older population living in their homes. Strategies to improve participation were applied in the RCT “Lifestyle intervention for older adults in rehabilitation after stroke: development, implementation and evaluation”. Quantitative data collected on participants (n =99) and non-participants (n =56) in the trial were compared using statistical analyses. The findings are in line with earlier studies in that the participants were younger (p =0.01) and received less help in the home (p =0.01) than did non-participants. The results differ from earlier studies in that participants had a higher rate of depressive symptoms (participation rate was 57% with HAD depression scale score 0–2, 61% with score 3–4, 62% with score 5–6 and 79% with a score 7 or above). The findings also illustrate a poorer health-related quality of life among the participants in the role physical domain on Short Form-36 (p =0.01). The results indicate that the use of targeted strategies to enhance participation may lead to a less biased sample as well as the inclusion of more subjects who seem to meet the aims of the intervention. [Copyright &y& Elsevier]