The term Big Data is commonly used to describe a range of different concepts: from the collection and aggregation of vast amounts of data, to a plethora of advanced digital techniques designed to reveal patterns related to human behavior. In spite of its widespread use, the term is still loaded with conceptual vagueness. The aim of this study is to examine the understanding of the meaning of Big Data from the perspectives of researchers in the fields of psychology and sociology in order to examine whether researchers consider currently existing definitions to be adequate and investigate if a standard discipline centric definition is possible. Methods Thirty-nine interviews were performed with Swiss and American researchers involved in Big Data research in relevant fields. The interviews were analyzed using thematic coding. Results No univocal definition of Big Data was found among the respondents and many participants admitted uncertainty towards giving a definition of Big Data. A few participants described Big Data with the traditional "Vs" definition-although they could not agree on the number of Vs. However, most of the researchers preferred a more practical definition, linking it to processes such as data collection and data processing.
•Adequate participation of pediatric patients in communication and decision-making is recommended by professional guidelines but little guidance exists as to how to translate it into practice. What is New: •The strategies used by physicians, parents, and patients to achieve participation are complex and serve to both enable and restrict children's and adolescents' involvement.
The ethical imperative for inclusion of children in their health care choices was not so much determined by the right for self-determination, but by the need to include them. If children are excluded, they imagine things, become more isolated, and are left alone with their fears. Nevertheless, the urge to protect children is innate, as adults often underestimate children's coping capacities.
Palliative care (PC) aims to improve quality of life for patients and their families. The World Health Organization and American Academy of Pediatrics recommend that PC starts at diagnosis for children with cancer. This systematic review describes studies that reported PC timing in the pediatric oncology population. The following databases were searched: PubMed, Web of Science, CINAHL, and PsycInfo databases. Studies that reported time of PC initiation were independently screened and reviewed by 2 researchers. Studies describing pilot initiatives, published prior to 1998, not written in English, or providing no empirical time information on PC were excluded. Extracted data included sample characteristics and timing of PC discussion and initiation. Of 1120 identified citations, 16 articles met the inclusion criteria and comprised the study cohort. Overall, 54.5% of pediatric oncology patients received any palliative service prior to death. Data revealed PC discussion does not occur until late in the illness trajectory, and PC does not begin until close to time of death. Despite efforts to spur earlier initiation, many pediatric oncology patients do not receive any palliative care service, and those who do, predominantly receive it near the time of death. Delays occur both at first PC discussion and at PC initiation. Efforts for early PC integration must recognize the complex determinants of PC utilization across the illness timeline.
Patient participation in these processes was reported as sometimes limited, but parents and oncologists should continue to probe patients' abilities and desire to be involved in decision making. Future research should expand the DPM and explore how decisional priority and authority can be shared by oncologists with parents and even patients.
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