Younger stroke survivors' experiences of family life in a long-term perspective: a narrative hermeneutic phenomenological study

The psychosocial consequences following a stroke are known to be challenging, influencing the stroke survivors’ ability to participate in and carry out the taken-for-granted roles and activities in family life. This study explored how living with the consequences of stroke impacted on family life in the late recovery phase, that is, six months or more after stroke onset. Twentytwo stroke survivors aged 20–61 years were interviewed in-depth six months to nine years after stroke onset. The interviews were analyzed applying a narrative, hermeneutic phenomenological approach. The findings revealed challenges that varied with time, from an initial struggle to suffice in and balance the relationships and roles within the family early after the stroke, towards a more resigned attitude later on in the stroke trajectory. The struggles are summarized in two main themes: “struggling to reenter the family” and “screaming for acceptance.” Nonestablished people living with stroke and stroke survivors in parental roles seem to be particularly vulnerable. Being provided with opportunities to narrate their experiences to interested and qualified persons outside the home context might be helpful to prevent psychosocial problem

Retaining the patient perspective in the International Classification of Functioning, Disability and Health Core Set for low back pain

Cecilie Røe1,2, Unni Sveen1, Erik Bautz-Holter1,21Department of Physical Medicine and Rehabilitation, Ulleval University Hospital, Oslo, Norway; 2Faculty of Medicine, University of Oslo, NorwayObjective: To examine the relationship between health problems as rated by the health professionals in the Norwegian form of the Core Set for low back pain and the patients’ self-reported health problems in Oswestry Disability Index (ODI) and World Health Organization Disability Assessment Schedule II (WHODAS II).Methods: This was part of an international multicenter study where a convenience sample of 118 Norwegian patients with low back pain (LBP) participated. The ICF Core Set for LBP was filled in by the health professionals. The patients reported their health problems in the WHODAS II and ODI. The items in WHODAS II and ODI were linked to the ICF. The problems reported in WHODAS II and ODI were compared to the problems scored by the health professionals in the linked ICF categories in the Comprehensive ICF Core Set for LBP.Results: All items in ODI could be linked the ICF. Four items in WHODAS II could not be linked to the ICF and additionally two items could not be linked to specific ICF categories. All ICF categories linked to the ODI were included in the Comprehensive Core Set for LBP, whereas six items in WHODAS II could not be linked, and additionally 11 of the items were not represented in the Core Set. With the exception of sexual function, above three quarter of the patients’ reported problems within body functions was captured by the health professionals. Within several of the activities and participation categories the health professionals scores in the ICF reflected the patients’ reported problems well. Surprisingly some of the problems in activities of daily living were poorly reflected.Conclusion: The Comprehensive ICF Core Set for LBP covers most of the items in ODI and WHODAS II in areas where patients report significant problems, with some exceptions. The subjective dimension related to the impact of the health condition as well as the feeling of being a burden to their family appeared to be important to these patients and not covered in the ICF. Problems with sexual functions and relationship were poorly reflected in the health professionals’ scores in the Comprehensive ICF Core Set for LBP. In clinical practice it is a challenge to assess the individual patients’ broad spectrum of problems precisely.Keywords: low back pain, WHODAS II, ICF, musculoskeletal disorder

Community-Working Occupational Therapists Serving as Fieldwork Supervisors: Characteristics and Associated Factors

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 t-tests 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 \u3c 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

Occupational transaction after stroke constructed as threat and balance

Older adults who have had a stroke may experience anxiety, depression and difficulties participating in meaningful occupations while also experiencing excitement, discovery and satisfaction in creating a new occupational balance. The aim of this qualitative study was to explore how older adults experienced the changes in their everyday occupations after a stroke. Five women and three men who had experienced a mild to moderate stroke participated in focus group discussions. Systematic text condensation was applied. The participants’ experiences revealed how the stroke was perceived as an ‘occupational threat’ that produced feelings of social exclusion which were experienced as occupational exclusion, deprivation, marginalisation and imbalance. However, at the same time, the participants reconstructed occupational balance by performing occupations in new ways. The participants’ experiences provided insight into how they perceived their occupations as threatened after their stroke, while at the same time endeavoring to reconstruct occupational balance. These findings indicate that everyday life after stroke is a time of transaction where people are actively involved in creating control, occupational balance and being socially include

Re-creating self-identity and meaning through occupations during expected and unexpected transitions in life

The present study explores occupational engagement during expected and unexpected transitions in life, and how self-identity and meaning, situated in the context, is created and re-created through the daily occupations. We use case examples of children with disabilities, adults with acquired brain injury, older adults with stroke, and people with serious somatic illness who are undergoing rehabilitation. The cases are drawn from previous studies by each of the authors. In the present study, a secondary analysis of data was conducted based on an abductive approach and theories of self-identity and transaction, to illustrate how changes in everyday life occupations made sense. Three themes emerged that structure the discussion; Disruption of a former self, Pursuing normality, and Re-constructing daily occupations and routines. Our discussion illustrates how different life transitions can be demanding and how people, situated in the context, revise and create new meaning and self-identity through their occupations.acceptedVersio

Young and midlife stroke survivors’ experiences with the health services and long-term follow-up needs

-The aim of this qualitative study was to explore young and midlife stroke survivors’ experiences with the health services and to identify long-term follow-up needs. Sixteen participants from two cohorts were interviewed in-depth. The interviews were analyzed applying a hermeneuticYphenomenological analysis. The participants struggled to gain access to follow-up health services. They felt that whether they were systematically followed up was more coincidental than planned. Young and midlife stroke survivors thus appear vulnerable to falling outside the follow-up system. Those participants who received some follow-up care perceived it as untailored to their specific needs. To be considered supportive, the follow-up programs must be in line with their long-term needs, take into account their particular challenges as young and midlife stroke survivors, and be planned in close collaboration with the individual patient. To secure systematic and follow-up health services tailored to the individual, knowledgeable and committed healthcare professionals should play a prominent role within the community health services

Generalist, specialist and generic positions experienced by occupational therapists in Norwegian municipalities

Purpose – Reforms in the health-care system may impact how health-care professionals perceive and enact their roles. This study aims to examine the way in which occupational therapists experience and describe their roles in municipalities after the implementation of a health reform (the Coordination Act) in Norway. Design/methodology/approach – This qualitative study was designed within the perspectives of social constructivism. Data was collected through focus group interviews with 10 community-working occupational therapists. A thematic framework analysis was used to examine the participants’ experiences. Findings – The following four themes emerged: external factors that framed and shaped the occupational therapists’ roles in municipalities; the strengths and dilemmas of the generalist; the problematic generic position and the strengths; and dilemmas of the specialist. Originality/value – The study suggests that occupational therapy practitioners should identify new opportunities and adapt to health reform changes. They also need to renegotiate their roles as the health reforms require more specialized competences. Greater emphasis must be placed on the core knowledge and competences of occupational therapists to strengthen their professional identity in the municipalities. Keywords Health-care, Community-based occupational therapy practice, Generalist, Specialist, Generic role, Core knowledgepublishedVersio

The Applicability of the Patient-Specific Functional Scale (PSFS) in Rehabilitation for Patients with Acquired Brain Injury (ABI) – A Cohort Study

Aim: The primary aim of this study was to investigate the applicability of the Patient-Specific Functional Scale (PSFS) in patients with acquired brain injury (ABI) admitted to a specialized rehabilitation unit in a regional hospital. A secondary aim was to identify patient characteristics and functioning that predicted changes in the PSFS. Patients and methods: In a cohort study, 59 patients with ABI were assessed for the ability to complete the PSFS. A trained multidisciplinary team applied the PSFS as part of a collaborative development of rehabilitation goals. The modified Rankin Scale (mRS), the Functional Ambulation Categories (FAC), the Rivermead Behavioural Memory Test (RBMT), the Norwegian Basic Aphasia Assessment (NBAA) and the Loewenstein Occupational Therapy Cognitive Assessment (LOTCA) were used to identify characteristics of the sample. Multivariate regression analyses were performed to investigate associations between changes in the PSFS score from admission to discharge and a selected set of participant baseline characteristics and functioning. Results: Fifty-four patients (92%) of the patients with ABI were able to complete the PSFS. The five (8%) who were unable to complete the PSFS had severe cognitive or language impairment. The PSFS score improved by a mean of 2.6 (SD 2.0) points from admission to discharge. The LOTCA score made the strongest unique contribution to explain the change in the PSFS score (beta = 0.477, p= 0.020). Conclusion: In the present study, most patients with ABI (92%) were able to complete the PSFS. Cognitive function on admission was a predictor of improved functioning on the PSFS. Keywords: multidisciplinary rehabilitation; patient-identified goals; patient-specific outcome measure; shared decision making. © 2020 Evensen et al.publishedVersio

The fragile process of homecoming - Young women in recovery from severe ME/CFS

This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.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.publishedVersio

Measurement Properties of the Patient-Specific Functional Scale in Rehabilitation for Patients With Stroke: A Prospective Observational Study

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. Goals, Patient-Reported Outcome Measure, Patient-Specific Functional Scale, Rehabilitation, Shared Decision Making, StrokepublishedVersio