28 research outputs found

    Young patients', parents', and survivors' communication preferences in paediatric oncology: Results of online focus groups

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    Contains fulltext : 51596.pdf ( ) (Open Access)BACKGROUND: Guidelines in paediatric oncology encourage health care providers to share relevant information with young patients and parents to enable their active participation in decision making. It is not clear to what extent this mirrors patients' and parents' preferences. This study investigated communication preferences of childhood cancer patients, parents, and survivors of childhood cancer. METHODS: Communication preferences were examined by means of online focus groups. Seven patients (aged 8-17), 11 parents, and 18 survivors (aged 8-17 at diagnosis) participated. Recruitment took place by consecutive inclusion in two Dutch university oncological wards. Questions concerned preferences regarding interpersonal relationships, information exchange and participation in decision making. RESULTS: Participants expressed detailed and multi-faceted views regarding their needs and preferences in communication in paediatric oncology. They agreed on the importance of several interpersonal and informational aspects of communication, such as honesty, support, and the need to be fully informed. Participants generally preferred a collaborative role in medical decision making. Differences in views were found regarding the desirability of the patient's presence during consultations. Patients differed in their satisfaction with their parents' role as managers of the communication. CONCLUSION: Young patients' preferences mainly concur with current guidelines of providing them with medical information and enabling their participation in medical decision making. Still, some variation in preferences was found, which faces health care providers with the task of balancing between the sometimes conflicting preferences of young cancer patients and their parents

    EmojiNet: Building a Machine Readable Sense Inventory for Emoji

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    Book reviews

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    A survey of equine abortion and perinatal foal losses in Hungary during a three-year period (1998-2000)

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    Cases of equine abortion and perinatal foal losses were investigated in Hungary during a three-year period (1998-2000). Samples from aborted equine fetuses and newborn foals (total n = 96) were examined using bacteriological, virological, pathological, immunohistochemical (IHC), molecular biological and serological methods. The cause of abortion and perinatal foal loss was identified in 67/96 cases (70%); viral infection was found in 22 (23%), viral and bacterial coinfection in 1 (1%), bacterial infection in 23 (24%), protozoan infection in 1 (1%) and fungal infection in 2 cases (2%). Morphological lesions suggestive of infection were recorded in 2 (2%) and non-infectious causes in 16 cases (17%)

    Researching online populations: The use of online focus groups for social research

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    The survivability of ‘traditional’ methods within computer-mediated settings is dependent upon their capacity to be utilized and adapted to the technology that mediates human interaction online. This article addresses the established focus group method and evaluates its success in online applications, using as examples two quite different research projects. The first, drawn from research into the employment experiences of inflammatory bowel disease sufferers exemplifies the use of asynchronous online focus groups, identifying key practical issues such as online moderation and the analysis of digital data. In contrast the second study, into deviance within online communities, provides an example of how synchronous forms of online focus groups, held within 3D graphical environments, create further challenges for the researcher, highlighting unique ethical considerations of conducting fieldwork in cyberspace. The article draws together the authors’ experiences of applying the method to offer insights into the viability and practicability of online focus groups
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