2015
DOI: 10.1080/23294515.2014.997898
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How Do Young People with Cystic Fibrosis Conceptualize the Distinction Between Research and Treatment? A Qualitative Interview Study

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Cited by 7 publications
(8 citation statements)
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“…An important point to consider is that in some contexts, the advancement of research depends on the participation of particular participants. CF participants seem to understand this and do participate in research to advance research on their treatment and care (Dobson et al, 2015). Still, some of the participants in our study indicated that they found it difficult to repeatedly participate without ever knowing how their participation impacted the state of knowledge about CF, which indicates that how results are communicated is of critical importance since patients who do not recall receiving results perceive a deficiency in communication, even if such information is available to them.…”
Section: Discussionmentioning
confidence: 99%
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“…An important point to consider is that in some contexts, the advancement of research depends on the participation of particular participants. CF participants seem to understand this and do participate in research to advance research on their treatment and care (Dobson et al, 2015). Still, some of the participants in our study indicated that they found it difficult to repeatedly participate without ever knowing how their participation impacted the state of knowledge about CF, which indicates that how results are communicated is of critical importance since patients who do not recall receiving results perceive a deficiency in communication, even if such information is available to them.…”
Section: Discussionmentioning
confidence: 99%
“…Participants chose or were assigned a nickname to maintain confidentiality. A preliminary question guide based on previous research (Christofides et al., 2016; Dobson et al., 2015) was used and follow-up questions evolved with subsequent interviews. Sample questions included “What does being in a research study mean to you?” and “What kinds of questions did you have for the researcher?” Questions about the communication of results primarily occurred as a follow-up to comments made by the participants.…”
Section: Methodsmentioning
confidence: 99%
“…We used a preliminary question guide based on previous research (e.g. Dobson et al, 2015) that evolved as the interviews progressed to delve more fully into the themes that emerged from the interviews. The question guide asked about participants’ treatment routine, their personal life context, their experience with research and types of studies they had participated in, what types of studies they would or would not typically agree to take part in, their beliefs about the general purpose and value of research, their understanding of what it means to participate in research, and the perceived value of their contribution.…”
Section: Methodsmentioning
confidence: 99%
“…However, it has been shown that the distinction between research and care is difficult to maintain in practice across many different circumstances (Hallowell et al, 2010; Kass et al, 2013). More importantly, research participants themselves have been shown to have a nuanced understanding of the interconnectedness of research and treatment (Dobson, Christofides, Solomon, Waters, & O’Doherty, 2015; Mein et al, 2012).…”
mentioning
confidence: 99%
“…See also Beachamp and Childress(Beauchamp and Childress 2013, pp. 133-134);Horng and Grady (2003).6 For criticisms and debate about the ongoing validity of this demarcation, seeKass et al 2013;Hallowell et al 2009;Dobson et al 2015.…”
mentioning
confidence: 99%