Objective To review and synthesize findings across qualitative studies on Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS). Methods Articles were systematically reviewed and analyzed within a meta-analytic framework. Analyses included a multi-perspective (e.g., individual, physician, familial) examination of ME/CFS, as well as a comparative analysis of ME/CFS versus other chronic conditions. Results Thirty-four (34) qualitative studies on ME/CFS were identified and included. Findings include three substantive thematic areas that focus on studies concerning: (1) experiences of people with ME/CFS, (2) experiences of physicians, and (3) themes that intersect both of these groups. For patients, illness development influenced identity, reductions in functioning, and coping. Physician-specific themes described lack of awareness about the illness and recommended improvement in medical education. Themes that intersected expressed issues with diagnosis which creates tensions and fuels the stigmatization of ME/CFS. Conclusions Findings indicate multilayered, context-specific experiences and ways in which both people with ME/CFS, as well as the people involved in their lives, such as family or the medical community, understand their illness. Future qualitative studies should coalesce the various facets of the ME/CFS experience, the network members of people with ME/CFS, and the sociocultural environment through which the illness is understood. Practice implications Health care professionals can gain unique insight from patient experiences, allowing for more accurate diagnoses and treatment recommendations.
Background: This paper presents design and results from preliminary evaluation of Tangible Geometric Games (TAG-Games) for cognitive assessment in young children. The TAG-Games technology employs a set of sensor-integrated cube blocks, called SIG-Blocks, and graphical user interfaces for test administration and real-time performance monitoring. TAG-Games were administered to children from 4 to 8 years of age for evaluating preliminary efficacy of this new technology-based approach.Methods: Five different sets of SIG-Blocks comprised of geometric shapes, segmented human faces, segmented animal faces, emoticons, and colors, were used for three types of TAG-Games, including Assembly, Shape Matching, and Sequence Memory. Computational task difficulty measures were defined for each game and used to generate items with varying difficulty. For preliminary evaluation, TAG-Games were tested on 40 children. To explore the clinical utility of the information assessed by TAG-Games, three subtests of the age-appropriate Wechsler tests (i.e., Block Design, Matrix Reasoning, and Picture Concept) were also administered.Results: Internal consistency of TAG-Games was evaluated by the split-half reliability test. Weak to moderate correlations between Assembly and Block Design, Shape Matching and Matrix Reasoning, and Sequence Memory and Picture Concept were found. The computational measure of task complexity for each TAG-Game showed a significant correlation with participants' performance. In addition, age-correlations on TAG-Game scores were found, implying its potential use for assessing children's cognitive skills autonomously.
In previous qualitative research on Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS), researchers have focused on the experiences of patients with ME/CFS in tertiary care samples, which limit the representativeness of the findings to those with access to health care. This qualitative study examined the natural history of a community-based sample of people with ME/CFS. Participants (n=19) were categorized into persisting, incidence, or remitting groups based on their reported illness status across a ten year period. Findings highlighted multilayered themes involving the illness experience embedded in multiple systems and the physical construction of ME/CFS. In addition, this study further illuminated unique subthemes regarding community response and treatment, which have implications for understanding the progression of ME/CFS as well as experiences of those within patient networks. There is a need for more longitudinal qualitative research on epidemiological samples of patients with ME/CFS.
Purpose This study examined the relationship between level of treatment engagement through completion of homework and treatment outcomes within non-pharmacological interventions for participants with ME/CFS. Methods A sample of 82 participants with ME/CFS was randomly assigned to one of four non-pharmacological interventions. Each intervention involved 13 sessions over the course of six months. Change scores were computed for self-report measures taken at baseline and 12-month follow-up. Homework compliance was calculated as the percentage of completed assignments across the total number of sessions and grouped into three categories: minimum (0–25%), moderate (25.1–75%), or maximum (75.1–100%). Results Findings revealed that after controlling for treatment condition, those who completed a maximum amount of homework had greater improvement on a number of self-report outcome measures involving role, social and mental health functioning. There were no differential improvements in physical and fatigue functioning based on level of homework compliance. Implications Findings from this study suggest homework compliance can have a positive influence on some aspects of physical, social, and mental health functioning in participants with ME/CFS. It should be emphasized that these interventions do not cure this illness. The lack of significant changes in physical functioning and fatigue levels suggests a need for more multidisciplinary treatment approaches that can elicit improvement in these areas.
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