Global meaning in people with stroke: Content and changes.
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ABSTRACT:
SUBMITTER: Littooij E
PROVIDER: S-EPMC5221737 | biostudies-other | 2016 Jul
REPOSITORIES: biostudies-other
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Project description:Stroke survivors undergo a thorough cognitive diagnosis that often involves administration of multiple standardized tests. However, patient's narrative discourse can provide clinicians with additional knowledge on patient's subjective experience of illness, attitude toward current situation, and motivation for treatment. We evaluated the methods of analyzing thematic content and story types in relationship to cognitive impairment in stroke survivors with no aphasia (including 9 left hemisphere damage - LHD patients, and 16 right hemisphere damage - RHD patients). Cognitive impairment was evaluated in comparison to a group of 25 patients with orthopaedic injury not involving the brain. Our findings primarily show that higher elaboration on own cognitive problems, physical ailments or coping strategies in LHD patients and cognitive problems, emotional issues and circumstances of illness onset in RHD patients is related to deficits in executive functions and retrieval of information from memory. Furthermore, RHD patients who use more chaos story type show lower executive functioning. However, these results did not survive the significance threshold of p < 0.05 after Bonferroni adjustment for multiple comparisons. In conclusion, this study provides preliminary evidence that stroke survivor's narrative can constitute an additional source of clinically-relevant information regarding patient's experience of illness and attitude toward recovery. This knowledge can aid clinicians and nurses in everyday interactions with the patients and support individualized strategy to treatment. Still, the current results need be confirmed with future studies in a larger cohort of stroke patients.
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Project description:ObjectiveThis study explored how upper-extremity (UE) functional capacity and daily performance change during the course of outpatient rehabilitation in people with stroke.MethodFifteen participants receiving outpatient occupational therapy services for UE paresis poststroke were enrolled. UE motor capacity was measured with the Action Research Arm Test (ARAT), and UE performance was measured using bilateral, wrist-worn accelerometers. Measurements were taken at or near the start of therapy, at every 10th visit or every 30 days throughout the duration of services, and at discharge.ResultsThree patterns were observed: (1) increase in ARAT scores and more normalized accelerometry profiles, (2) increase in ARAT scores but no change in accelerometry profiles, and (3) no change in ARAT scores or in accelerometry profiles.ConclusionUE performance in daily life was highly variable, with inconsistencies between change in UE capacity and change in UE performance. UE capacity and performance are important constructs to assess separately during rehabilitation.
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Project description:BackgroundFibromyalgia (FM) is a contested, chronic widespread pain syndrome on which recommended therapies have short-lasting, moderate effects. Nevertheless, some patients become symptom-free, and their recovery experiences inspired us to develop a patient-centred recovery-oriented programme (PROP) delivered in a group format. Presently, we describe the theoretical rationale, purpose and content of the PROP, and its meanings for clinicians and patients.MethodsA multidisciplinary clinical team, a leader of a rehabilitation unit, and two researchers coproduced the PROP. Five full-day seminars were arranged to bridge research and clinical experiences. Qualitative studies about patients' illness and recovery experiences and questions by researchers facilitated reflections on clinical experiences. The meaning of the PROP was examined using focus group and individual interviews with patients and clinicians immediately after completing the course and after 1-1.5 years.ResultsThe biopsychosocial model displays the research evidence across biological, mental and social impacts of FM, justifying that life stress can be an illness-maintaining factor in FM. The content addresses enabling patients to heal their own life and self by modifying life stress. Patients engage in making sense of the relationship between FM, themselves, and life through exploring, discovering and creating appropriate solutions for their daily social life. The PROP reduced uncertainties and brought a positive attitude and hope to the groups. After 1 year, patients are still engaged in recovery work, experience more good days, and maintain hope for further recovery. By sharing and reflecting on clinical experiences, a unified clinical team was established that continues to develop their competency.ConclusionTo our knowledge, the PROP is the first programme for patients with FM that results from a process of coproducing knowledge, is based on explicit theoretical rationale, and facilitates a personal experiential recovery process. PROP is found to be meaningful and to work by patients and clinicians.
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Project description:BackgroundResearch addressing perceptions of housing in people with Parkinson's disease (PD) is rare, and existing instruments capturing perceived aspects of housing are rarely used. Perceived housing comprises of several domains and is associated with health in general older populations. One such domain is meaning of home, captured by the Meaning of Home Questionnaire (MOH). The aim of this study was to evaluate psychometric properties of the MOH among people with PD.Materials and methodsThe MOH was administrated to 245 participants with PD (mean age = 69.9 years; mean PD duration = 9.7 years). The instrument consisted of four sub-scales with 28 items, each with 11 response options (strongly disagree = 0; strongly agree = 10). We evaluated data quality, structural validity (factor analysis), construct validity (i.e., testing correlations with relevant constructs according to pre-defined hypotheses), corrected item total correlations, floor and ceiling effects and internal consistency.ResultsThe data quality was high (0-1.2% missing data). The exploratory factor analysis suggested removal of five items and revealed three new factors; "My home is my castle", "My home is my prison" and "My home is my social hub". The 23-item MOH showed statistically significant correlations with life satisfaction, usability and ADL dependence, while not correlated with number of environmental barriers. These findings were largely as hypothesised, thus supporting construct validity (both convergent and discriminant). The corrected item total correlations were >0.3 for all items and the internal consistency was >0.70 for all sub-scales. No floor or ceiling effects were reported except for the sub-scale "My home is my castle" (ceiling effect = 15.6%).ConclusionsThe 23-item MOH version with three new sub-scales is sufficiently reliable and valid for use in PD populations. This paves the way for further research of meaning of home among people with PD, using the 23-item MOH version.
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