140 research outputs found

    Understanding Technology as Situated Practice: Everyday use of Voice User Interfaces Among Diverse Groups of Users in Urban India

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    Abstract: As smartphones have become ubiquitous across urban India, voice user interfaces (VUIs) are increasingly becoming part of diverse groups of users’ daily experiences. These technologies are now generally accessible as a result of improvements in mobile Internet access, [-8.5pc]Biography is Required. Please provide. introduction of low-cost smartphones and the ongoing process of their localisation into Indian languages. However, when people engage with technologies in their everyday lives, they not only enact the material attributes of the artifact but also draw on their skills, social positions, prior experience and societal norms and expectations to make use of the artifact. Drawing on Orlikowski’s analytical framework of “technologies-in-practice” we engage in an interview-based exploratory study among diverse groups of users in urban India to understand use of VUIs as situated practice. We identify three technologies-in-practice emerging through enactment of VUIs on users’ smartphones: looking up, learning and leisure. We argue that – instead of asking why and how users appropriate VUIs – identifying different kinds of enactments of VUIs present researchers and practitioners with a more nuanced understanding of existing and potential use of VUIs across varied contexts

    The orphaning experience: descriptions from Ugandan youth who have lost parents to HIV/AIDS

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    The HIV/AIDS epidemic has continued to pose significant challenges to countries in Sub-Saharan Africa. Millions of African children and youth have lost parents to HIV/AIDS leaving a generation of orphans to be cared for within extended family systems and communities. The experiences of youth who have lost parents to the HIV/AIDS epidemic provide an important ingress into this complex, evolving, multi-dimensional phenomenon. A fundamental qualitative descriptive study was conducted to develop a culturally relevant and comprehensive description of the experiences of orphanhood from the perspectives of Ugandan youth. A purposeful sample of 13 youth who had lost one or both parents to HIV/AIDS and who were affiliated with a non-governmental organization providing support to orphans were interviewed. Youth orphaned by HIV/AIDS described the experience of orphanhood beginning with parental illness, not death. Several losses were associated with the death of a parent including lost social capitol, educational opportunities and monetary assets. Unique findings revealed that youth experienced culturally specific stigma and conflict which was distinctly related to their HIV/AIDS orphan status. Exploitation within extended cultural family systems was also reported. Results from this study suggest that there is a pressing need to identify and provide culturally appropriate services for these Ugandan youth prior to and after the loss of a parent(s)

    Living with myotonic dystrophy; what can be learned from couples? a qualitative study

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    Contains fulltext : 96062.pdf (publisher's version ) (Open Access)BACKGROUND: Myotonic dystrophy type 1 (MD1) is one of the most prevalent neuromuscular diseases, yet very little is known about how MD1 affects the lives of couples and how they themselves manage individually and together. To better match health care to their problems, concerns and needs, it is important to understand their perspective of living with this hereditary, systemic disease. METHODS: A qualitative study was carried out with a purposive sample of five middle-aged couples, including three men and two women with MD1 and their partners. Fifteen in-depth interviews with persons with MD1, with their partners and with both of them as a couple took place in the homes of the couples in two cities and three villages in the Netherlands in 2009. Results : People with MD1 associate this progressive, neuromuscular condition with decreasing abilities, describing physical, cognitive and psychosocial barriers to everyday activities and social participation. Partners highlighted the increasing care giving burden, giving directions and using reminders to compensate for the lack of initiative and avoidant behaviour due to MD1. Couples portrayed the dilemmas and frustrations of renegotiating roles and responsibilities; stressing the importance of achieving a balance between individual and shared activities. All participants experienced a lack of understanding from relatives, friends, and society, including health care, leading to withdrawal and isolation. Health care was perceived as fragmentary, with specialists focusing on specific aspects of the disease rather than seeking to understand the implications of the systemic disorder on daily life. CONCLUSIONS: Learning from these couples has resulted in recommendations that challenge the tendency to treat MD1 as a condition with primarily physical impairments. It is vital to listen to couples, to elicit the impact of MD1, as a multisystem disorder that influences every aspect of their life together. Couple management, supporting the self-management skills of both partners is proposed as a way of reducing the mismatch between health services and health needs

    Rehabilitation needs for older adults with stroke living at home: perceptions of four populations

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    <p>Abstract</p> <p>Background</p> <p>Many people who have suffered a stroke require rehabilitation to help them resume their previous activities and roles in their own environment, but only some of them receive inpatient or even outpatient rehabilitation services. Partial and unmet rehabilitation needs may ultimately lead to a loss of functional autonomy, which increases utilization of health services, number of hospitalizations and early institutionalization, leading to a significant psychological and financial burden on the patients, their families and the health care system. The aim of this study was to explore partially met and unmet rehabilitation needs of older adults who had suffered a stroke and who live in the community. The emphasis was put on needs that act as obstacles to social participation in terms of personal factors, environmental factors and life habits, from the point of view of four target populations.</p> <p>Methods</p> <p>Using the focus group technique, we met four types of experts living in three geographic areas of the province of Québec (Canada): older people with stroke, caregivers, health professionals and health care managers, for a total of 12 groups and 72 participants. The audio recordings of the meetings were transcribed and NVivo software was used to manage the data. The process of reducing, categorizing and analyzing the data was conducted using themes from the Disability Creation Process model.</p> <p>Results</p> <p>Rehabilitation needs persist for nine capabilities (e.g. related to behaviour or motor activities), nine factors related to the environment (e.g. type of teaching, adaptation and rehabilitation) and 11 life habits (e.g. nutrition, interpersonal relationships). The caregivers and health professionals identified more unmet needs and insisted on an individualized rehabilitation. Older people with stroke and the health care managers had a more global view of rehabilitation needs and emphasized the availability of resources.</p> <p>Conclusion</p> <p>Better knowledge of partially met or unmet rehabilitation needs expressed by the different types of people involved should lead to increased attention being paid to education for caregivers, orientation of caregivers towards resources in the community, and follow-up of patients' needs in terms of adjustment and rehabilitation, whether for improving their skills or for carrying out their activities of daily living.</p

    The DZHK research platform: maximisation of scientific value by enabling access to health data and biological samples collected in cardiovascular clinical studies

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    The German Centre for Cardiovascular Research (DZHK) is one of the German Centres for Health Research and aims to conduct early and guideline-relevant studies to develop new therapies and diagnostics that impact the lives of people with cardiovascular disease. Therefore, DZHK members designed a collaboratively organised and integrated research platform connecting all sites and partners. The overarching objectives of the research platform are the standardisation of prospective data and biological sample collections among all studies and the development of a sustainable centrally standardised storage in compliance with general legal regulations and the FAIR principles. The main elements of the DZHK infrastructure are web-based and central units for data management, LIMS, IDMS, and transfer office, embedded in a framework consisting of the DZHK Use and Access Policy, and the Ethics and Data Protection Concept. This framework is characterised by a modular design allowing a high standardisation across all studies. For studies that require even tighter criteria additional quality levels are defined. In addition, the Public Open Data strategy is an important focus of DZHK. The DZHK operates as one legal entity holding all rights of data and biological sample usage, according to the DZHK Use and Access Policy. All DZHK studies collect a basic set of data and biosamples, accompanied by specific clinical and imaging data and biobanking. The DZHK infrastructure was constructed by scientists with the focus on the needs of scientists conducting clinical studies. Through this, the DZHK enables the interdisciplinary and multiple use of data and biological samples by scientists inside and outside the DZHK. So far, 27 DZHK studies recruited well over 11,200 participants suffering from major cardiovascular disorders such as myocardial infarction or heart failure. Currently, data and samples of five DZHK studies of the DZHK Heart Bank can be applied for

    Best practice framework for Patient and Public Involvement (PPI) in collaborative data analysis of qualitative mental health research: methodology development and refinement

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    Background Patient and Public Involvement (PPI) in mental health research is increasing, especially in early (pre-funding) stages. PPI is less consistent in later stages, including in analysing qualitative data. The aims of this study were to develop a methodology for involving PPI co-researchers in collaboratively analysing qualitative mental health research data with academic researchers, to pilot and refine this methodology, and to create a best practice framework for collaborative data analysis (CDA) of qualitative mental health research. Methods In the context of the RECOLLECT Study of Recovery Colleges, a critical literature review of collaborative data analysis studies was conducted, to identify approaches and recommendations for successful CDA. A CDA methodology was developed and then piloted in RECOLLECT, followed by refinement and development of a best practice framework. Results From 10 included publications, four CDA approaches were identified: (1) consultation, (2) development, (3) application and (4) development and application of coding framework. Four characteristics of successful CDA were found: CDA process is co-produced; CDA process is realistic regarding time and resources; demands of the CDA process are manageable for PPI co-researchers; and group expectations and dynamics are effectively managed. A four-meeting CDA process was piloted to o-produce a coding framework based on qualitative data collected in RECOLLECT and to create a mental health service user-defined change model relevant to Recovery Colleges. Formal and informal feedback demonstrated active involvement. The CDA process involved an extra 80 person-days of time (40 from PPI coresearchers, 40 from academic researchers).The process was refined into a best practice framework comprising Preparation, CDA and Application phases. Conclusions This study has developed a typology of approaches to collaborative analysis of qualitative data in mental health research, identified from available evidence the characteristics of successful involvement, and developed, piloted and refined the first best practice framework for collaborative analysis of qualitative data. This framework has the potential to support meaningful PPI in data analysis in the context of qualitative mental health research studies, a previously neglected yet central part of the research cycle
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