113 research outputs found

    Research Methodologies for Participants Experiencing Vulnerability: A Transformative Service Research Perspective

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    Understanding vulnerable consumers when conducting Transformative Service Research (TSR) is essential but these consumers and their contexts are often complex and difficult to research. Despite a movement towards TSR research methodologies suitable for studying vulnerable participants and their contexts, a comprehensive framework that can guide service researchers is lacking. The purpose of this paper is to investigate appropriate methods, procedures, and protocols that permit researching a wide range of vulnerable groups and exposures to vulnerable situations in TSR. This is undertaken via a review of the literature and the authors’ reflections of their experience researching vulnerability in various configurations (e.g., disasters, refugees, healthcare, disability, and older people). Through an iterative process of personal case reflections and group discussions blended with extant literature, patterns and insights regarding appropriate research protocols, techniques, processes, and sampling are identified. These insights contribute to the development of a comprehensive TSR framework in five research method areas including 1) consideration of the context, researcher, support persons and participants, 2) recruitment considerations relating to sampling, 3) recruitment considerations in terms of ethics and set-up, 4) data collection considerations relating to research protocol and set-up, and 5) data collection considerations. The framework can guide both academics and practitioners to enhance research outcomes for both participants and researchers

    Conceptual Underpinnings for Transformative Research in a Service Ecosystems Context to Resolve Social Issues – Framework Foundations and Extensions

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    A number of services within society are designed to improve the well-being of its members and transform lives. Some services focus on the protection and support of vulnerable members of society, for example, those suffering the effects of drug use, mental health conditions, violence or poverty. Clients of such social services may also come from minority or marginalised cultural backgrounds. Typically, social services aim to reduce disparities and enhance individual and population well-being. A major challenge for social policy-makers and social service providers is to establish and maintain constructive engagement between the social services and those they are intended to serve. Some of these vulnerable clients are deemed ‘hard-to-reach’ (HTR) by policy-makers and service providers. Yet, the transformation of lives requires the involvement of the focal actor (client) and their service or activity system, as well as the engagement of other actors, such as the social worker embedded in their service or activity system. This paper aims to further unpack a novel approach, called integrative transformative service framework. This contribution extends its conceptualisation which fuses mainly three different approaches, namely Transformative Service Research (TSR), (Cultural-Historical) Activity Theory (CHAT) and (Regulatory) Engagement Theory (RET)

    Alterations and test-retest reliability of functional connectivity network measures in cerebral small vessel disease

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    While structural network analysis consolidated the hypothesis of cerebral small vessel disease (SVD) being a disconnection syndrome, little is known about functional changes on the level of brain networks. In patients with genetically defined SVD (CADASIL,n= 41) and sporadic SVD (n= 46), we independently tested the hypothesis that functional networks change with SVD burden and mediate the effect of disease burden on cognitive performance, in particular slowing of processing speed. We further determined test-retest reliability of functional network measures in sporadic SVD patients participating in a high-frequency (monthly) serial imaging study (RUN DMC-InTENse, median: 8 MRIs per participant). Functional networks for the whole brain and major subsystems (i.e., default mode network, DMN;fronto-parietal task control network, FPCN;visual network, VN;hand somatosensory-motor network, HSMN) were constructed based on resting-state multi-band functional MRI. In CADASIL, global efficiency (a graph metric capturing network integration) of the DMN was lower in patients with high disease burden (standardized beta = -.44;p[corrected] = .035) and mediated the negative effect of disease burden on processing speed (indirect path: std. beta = -.20,p= .047;direct path: std. beta = -.19,p= .25;total effect: std. beta = -.39,p= .02). The corresponding analyses in sporadic SVD showed no effect. Intraclass correlations in the high-frequency serial MRI dataset of the sporadic SVD patients revealed poor test-retest reliability and analysis of individual variability suggested an influence of age, but not disease burden, on global efficiency. In conclusion, our results suggest that changes in functional connectivity networks mediate the effect of SVD-related brain damage on cognitive deficits. However, limited reliability of functional network measures, possibly due to age-related comorbidities, impedes the analysis in elderly SVD patients

    The genetic study of three population microisolates in South Tyrol (MICROS): study design and epidemiological perspectives

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    <p>Abstract</p> <p>Background</p> <p>There is increasing evidence of the important role that small, isolated populations could play in finding genes involved in the etiology of diseases. For historical and political reasons, South Tyrol, the northern most Italian region, includes several villages of small dimensions which remained isolated over the centuries.</p> <p>Methods</p> <p>The MICROS study is a population-based survey on three small, isolated villages, characterized by: old settlement; small number of founders; high endogamy rates; slow/null population expansion. During the stage-1 (2002/03) genealogical data, screening questionnaires, clinical measurements, blood and urine samples, and DNA were collected for 1175 adult volunteers. Stage-2, concerning trait diagnoses, linkage analysis and association studies, is ongoing. The selection of the traits is being driven by expert clinicians. Preliminary, descriptive statistics were obtained. Power simulations for finding linkage on a quantitative trait locus (QTL) were undertaken.</p> <p>Results</p> <p>Starting from participants, genealogies were reconstructed for 50,037 subjects, going back to the early 1600s. Within the last five generations, subjects were clustered in one pedigree of 7049 subjects plus 178 smaller pedigrees (3 to 85 subjects each). A significant probability of familial clustering was assessed for many traits, especially among the cardiovascular, neurological and respiratory traits. Simulations showed that the MICROS pedigree has a substantial power to detect a LOD score ≥ 3 when the QTL specific heritability is ≥ 20%.</p> <p>Conclusion</p> <p>The MICROS study is an extensive, ongoing, two-stage survey aimed at characterizing the genetic epidemiology of Mendelian and complex diseases. Our approach, involving different scientific disciplines, is an advantageous strategy to define and to study population isolates. The isolation of the Alpine populations, together with the extensive data collected so far, make the MICROS study a powerful resource for the study of diseases in many fields of medicine. Recent successes and simulation studies give us confidence that our pedigrees can be valuable both in finding new candidates loci and to confirm existing candidate genes.</p
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