The usefulness of offering 24/7 online support within a wider mix of professional services for people with intellectual and developmental disabilities living independently : a qualitative, multiple case study

Service organizations for people with intellectual and developmental disabilities (IDD) increasingly use telecare applications to improve their services. This study explored the usefulness of offering the 24/7 online support service DigiContact within a broader mix of professional services for people with IDD living independently. We employed a qualitative multiple case study, in which the cases of nine online support users were reconstructed through semistructured interviews with both support users and their case workers. Thematic analysis showed that online support was used as an addition to regular onsite support to enable a more tailor-made delivery of professional supports. Online support can be valuable for its users by increasing the accessibility of professional support and creating opportunities for more self-direction in support

An exploration of family quality of life in persons with leprosy-, lymphatic filariasis- and podoconiosis-related disabilities and their family members in Ethiopia

BACKGROUND: Leprosy, podoconiosis and lymphatic filariasis (LF) may adversely affect the social, economic and psychological well-being of persons affected and their families. The objectives of this study were to assess and compare family quality of life of persons affected and their family members, explore the relationship between family quality of life and perceived stigma and activity limitations and explore what factors influence family quality of life. METHODS: A cross-sectional quantitative study was conducted in the Awi zone in Ethiopia. Persons affected and their family members were selected using purposive sampling. Three questionnaires were used: the Beach Center Family Quality of Life (FQOL) scale (range 25-125, with higher scores denoting higher family quality of life), the SARI Stigma Scale (range 0-63, with higher scores denoting higher levels of stigma) and the Screening of Activity Limitation and Safety Awareness (SALSA) scale (range 0-80, with higher scores denoting more activity limitations). Data analysis consisted of simple descriptive analysis and regression analysis. RESULTS: A total of 95 persons affected and 117 family members were included. The overall mean of the family quality of life score was 71.7. Persons affected had significantly higher mean family quality of life scores than family members on all domains. Female gender, a smaller family size and occupation were associated with lower family quality of life. We found a mean SARI Stigma score of 22.3 and a mean SALSA score of 37.6. There was no association between the FQOL and SARI scores or between

'Good Morning Fitfam': Top posts, hashtags and gender display on Instagram

Social networking sites are important platforms for visual self-presentation online. This article investigates how content producers present their gender identities on the social networking site, Instagram. We draw upon and develop Goffman’s analytic framework to understand the self-presentation techniques and styles users employ online. Conducting a visual content analysis of clean eating–related top posts, we examine how users deploy clean eating hashtags and how the architecture of Instagram constrains and enables certain identities around shared lifestyles and commercial interests. Our findings reveal the symbolic significance of hashtags for group membership and the degree to which gender identities on Instagram are configured around platform interfaces

The ALICE experiment at the CERN LHC

ALICE (A Large Ion Collider Experiment) is a general-purpose, heavy-ion detector at the CERN LHC which focuses on QCD, the strong-interaction sector of the Standard Model. It is designed to address the physics of strongly interacting matter and the quark-gluon plasma at extreme values of energy density and temperature in nucleus-nucleus collisions. Besides running with Pb ions, the physics programme includes collisions with lighter ions, lower energy running and dedicated proton-nucleus runs. ALICE will also take data with proton beams at the top LHC energy to collect reference data for the heavy-ion programme and to address several QCD topics for which ALICE is complementary to the other LHC detectors. The ALICE detector has been built by a collaboration including currently over 1000 physicists and engineers from 105 Institutes in 30 countries. Its overall dimensions are 161626 m3 with a total weight of approximately 10 000 t. The experiment consists of 18 different detector systems each with its own specific technology choice and design constraints, driven both by the physics requirements and the experimental conditions expected at LHC. The most stringent design constraint is to cope with the extreme particle multiplicity anticipated in central Pb-Pb collisions. The different subsystems were optimized to provide high-momentum resolution as well as excellent Particle Identification (PID) over a broad range in momentum, up to the highest multiplicities predicted for LHC. This will allow for comprehensive studies of hadrons, electrons, muons, and photons produced in the collision of heavy nuclei. Most detector systems are scheduled to be installed and ready for data taking by mid-2008 when the LHC is scheduled to start operation, with the exception of parts of the Photon Spectrometer (PHOS), Transition Radiation Detector (TRD) and Electro Magnetic Calorimeter (EMCal). These detectors will be completed for the high-luminosity ion run expected in 2010. This paper describes in detail the detector components as installed for the first data taking in the summer of 2008

Gouden verbindingen: Kennis ervaren, herkennen en erkennen.

De unieke kennis die het leven met beperkingen – exceptionaliteiten – met zich meebrengt, komt nauwelijks tot haar recht. Alice Schippers stelt in haar oratie deze specifieke vorm van onrecht, epistemologisch onrecht, aan de orde. Zij doet dit vanuit het vakgebied disability studies, een geëngageerd vakgebied dat het leven met exceptionaliteiten als maatschappelijk complex verschijnsel bestudeert. Op basis van publieke opvattingen, praktijken en processen veronderstellen we een ‘normaal’ werkend lichaam en geest, waarbij mensen met beperkingen worden gemarginaliseerd en onzichtbare anderen worden. Zij pleit voor een pluralistische benadering van kennis en kennisproductie, waarin we ruimte maken voor onconventionele en alternatieve benaderingen om kennislacunes te slechten. Deze sociale verandering betreft iedereen: we doen onszelf tekort als we bepaalde kennisaspecten buiten beeld houden. In het aangaan van verbindingen tussen diverse vormen van kennis en kennisdragers vinden we goud

The cross-cultural validation of the Beach Center Family Quality of Life Scale among persons affected by leprosy or podoconiosis in Northwest Ethiopia

BACKGROUND: The Beach Center Family Quality of Life Scale has been developed and validated in different languages in different countries. However, this scale has not been validated in the Ethiopian Amharic language context. Therefore, this study aimed to investigate the cross-cultural validity of the Beach Center Family Quality of Life Scale, among Ethiopian families of persons affected by leprosy and podoconiosis.METHODOLOGY: We explored the semantic equivalence, internal consistency, reproducibility, floor and ceiling effects, and interpretability of the Beach Center Family Quality of Life Scale in Amharic. A cross-sectional study was conducted after the translation and back-translation of the instrument. A total of 302 adult persons affected by leprosy or podoconiosis was asked about their level of satisfaction with their family life, using the Beach Center Family Quality of Life Scale. In addition, 50 participants were re-interviewed two weeks after the initial assessment to test the reproducibility of the scale. Participants were recruited in the East Gojjam zone of Northwest Ethiopia. RESULTS: The findings of this study showed that the Beach Center Family Quality of Life Scale had high internal consistency (Cronbach's alpha of 0.913) and reproducibility (intra-class correlation coefficient of 0.857). The standard error of measurement was 3.01, which is 2.4% of the total score range. The smallest detectable change was 8.34. Confirmatory factor analysis showed adequate factor loadings and model fit indices like the original scale. The composite reliability and average variance extracted from the scale were acceptable. No floor and ceiling effects were found. CONCLUSIONS: Our findings indicate that the Amharic version of the Beach Center Family Quality of Life Scale has adequate cultural validity to assess the family quality of life in Ethiopian families of persons affected by leprosy and podoconiosis.</p

'It really is quite a different ballgame'. A qualitative study into the work experiences of remote support professionals

Background Professional support for people with intellectual disabilities is increasingly provided remotely. This study explores what support staff of the Dutch remote support service DigiContact experience as distinctive aspects of their job as a remote support professional. Method Semi-structured interviews were held with 10 DigiContact support workers. The transcripts were analysed through a qualitative content analysis process. Results Six themes were identified that reflect distinct aspects of the participants' work within the DigiContact remote support context: being encouraged to adopt a solution-oriented coaching support style; being limited in one's support options; facing considerable diversity; providing support as one team; dealing with unpredictability; and navigating the dynamic within work shifts. Conclusions The way support is organised and delivered can have substantial implications for support professionals. Working at a service like DigiContact seems to call for specific skills, knowledge, affinities and experience, and for appropriate support and facilitation from organisations

Supporting independently living people with intellectual disabilities : a qualitative study into professional remote support practices

Background Professional support for people with intellectual disabilities is increasingly delivered remotely. Understanding what support workers do to support people with intellectual disabilities remotely, and how they do this, is therefore important. The purpose of this study was to gain insight into the remote support practice of the support staff of the Dutch service DigiContact. Methods A qualitative study was performed in which we followed an inductive-iterative process and used different sources of information: documents, interviews with people who are supported by DigiContact and their caseworkers, and interviews with DigiContact support workers. Findings Seven themes were constructed and described. Four themes reflected the support activities of DigiContact support workers, and three themes reflected qualities that guide how the support is provided. Conclusions A remote support context can bring both challenges and opportunities to the practice of supporting people with intellectual disabilities. The findings can be useful for service organisations who are contemplating the adoption of remote support initiatives for people with intellectual disabilities

A family-based intervention for prevention and self-management of disabilities due to leprosy, podoconiosis and lymphatic filariasis in Ethiopia: A proof of concept study

A key issue for persons with leprosy-, lymphatic filariasis-and podoconiosis-related disabilities is the life-long need to practice self-management routines. This is difficult to sustain without regular encouragement and support of others. Family-based support may be a sus-tainable and feasible strategy to practice self-management routines. This proof of concept study aimed to develop and pilot a family-based intervention to support prevention and self-management of leprosy, lymphatic filariasis and podoconiosis-related disabilities in Ethiopia. We used a quasi-experimental pre/post intervention study design with a mixed methods approach. The study population included persons affected by leprosy, lymphatic filariasis and podoconiosis and their family members. All persons affected had visible impairments due to their condition. We collected physical impairment outcomes, data on activity limita-tions, stigma and family quality of life using the SALSA scale (range 0–80), the SARI stigma scale (range 0–63) and the Beach Centre Family Quality of Life scale (range 0–125) and conducted in-depth interviews and focus group discussions. Quantitative data were ana-lysed using paired t-tests, unequal variances t-tests, linear regression and binary logistic regression. Qualitative data were coded using open, inductive coding and content analysis. The family-based intervention consisted of self-management of disabilities, awareness raising and socio-economic empowerment. The intervention was delivered over several monthly group meetings over the course of several months. A total of 275 (100%) persons affected attended at least one session with a family member, and 215 (78%) attended at least three sessions. There was no significant improvement in eye and hand problems after the intervention. However, foot and leg impairments, number of acute attacks, lymphedema and shoe wearing all significantly improved at follow-up. In addition, family quality of life significantly improved from 67.4 at baseline to 89.9 at follow-up for family members and from 76.9 to 84.1 for persons affected (p<0.001). Stigma levels significantly decreased from 24.0 at baseline to 16.7 at follow-up (p<0.001). Activity levels improved, but not significantly. This proof of concept study showed that the family-based intervention had a positive effect on impairments and self-management of disabilities, family quality of life and stigma. We recommend a large-scale efficacy trial, using a randomised controlled trial and validated measurement tools, to determine its effectiveness and long-term sustainability