Trials and tribulations: Understanding motivations for clinical research participation amongst adults with cystic fibrosis

Lowton, Karen

doi:10.1016/j.socscimed.2005.03.039

Cited by 44 publications

(56 citation statements)

References 28 publications

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“…Other work has emphasized the importance of the social and clinical context of research participation, and fleshed out the social processes involved (but often ignored) in giving informed consent (Corrigan, 2003) and the dynamic process and variability over time of clinical drug trial participation (Cox, 2000). Outside the controlled clinical trial framework, Dixon-Woods et al (2007) have studied how volunteers invited to participate in a genetic epidemiology study made only limited use of the formal written information in reaching their decision (being more swayed by clinical and social factors such as trust in the source of the request), whereas Lowton (2005) has analyzed the motivation of cystic fibrosis patients in responding to requests to participate in many different kinds of research. She found this knowledgeable group taking an active role in making their personal risk assessments, tempered by contextual factors such as trust, habituation, group loyalty, and personal and health constraints.…”

Section: Relationship To Prior Researchmentioning

confidence: 99%

Volunteer Research Subjects’ Experience of Participation in Research on a Novel Diagnostic Technology for Breast Cancer

Morris

Schneider

2009

Qual Health Res

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Although volunteer research subjects play a crucial role in the development of new health technologies, there have been relatively few in-depth studies of what participation in research means to them, and how they manage and make sense of the research encounter. Using constructivist perspectives we analyze data from 15 United States-based women taking part in tests of prototype instrumentation with potential for cancer diagnosis, comparing their responses with findings from a larger study (using the same interview methodology) on United Kingdom-based women participating in a similar program. For both groups the prime concerns emerging at interview related to the social rather than the physical challenges of participation. Both deployed similar discursive strategies to manage these tensions.We suggest that, at least within the limits of the kind of low-risk, nontherapeutic research studied, lessons can be drawn for research management, particularly the key role of the researcher-researched working relationship in assuring mutually satisfactory outcomes.

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Section: Relationship To Prior Researchmentioning

confidence: 99%

Volunteer Research Subjects’ Experience of Participation in Research on a Novel Diagnostic Technology for Breast Cancer

Morris

Schneider

2009

Qual Health Res

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“…This literature has identified the values and characteristics of individual participants (e.g. Fry & Dwyer 2001), people's perceptions of the benefits of participation, such as the possibility of securing better treatment and specialist attention (Slevin, Mossman, Bowling, et al 1995;Wendler et al, 2008), risks, costs and benefits of participation (Lowton 2005) and aspects of information (Ellis, 2000: Jenkins andFallowfield, 2000 ) that are relevant to such decisions. But participation is distinct from cooperation.…”

Section: Introductionmentioning

confidence: 99%

“…Members of the health professions, and institutions such as the NHS, were taken to have good motives and to act in the public interest because, as Potter and Wetherell (1987:116) put it, they were 'taken to be members of relatively enduring categories, and in virtue of their category membership inferences are made from the attributes of individuals to the attributes of the rest of the category'. As Lowton's (2005) has also reported, a distinct but related element of participants' assessment of whether cooperation was warranted relied on interpersonal trust. Interpersonal trust, as described by participants, was created through 'facework' (Giddens 1990), where encounters between recruiters and those being asked to take part had characteristics of trustworthiness, including qualities of friendship, respect, and politeness.…”

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confidence: 97%

Why do people cooperate with medical research? Findings from three studies

Dixon‐Woods

Tarrant

2009

Social Science & Medicine

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In this paper, we distinguish decisions about cooperation from decisions about research participation. We offer an empirical and theoretical exploration of why people in three different UK-based medical research projects chose to cooperate. Data analysis of the accounts of 128 participants across the three studies was based on the constant comparative method.Participants' cooperation was engaged by a perception that they would be contributing to the 'public good', but they also wanted to justify their decision as sensible and safe. Critical to their cooperation was their belief that researchers would fulfil their side of the cooperative bargain, by not exposing participants to risks of harm or exploitation. Although participants were generally unaware of the details of the regulatory regime for research, they demonstrated a generalised reliance on regulation as a feature of everyday life that would provide a safe context for cooperation. In their assessment of particular projects, participants made judgements about whether to cooperate based on more specific cues, which acted as signs to assure them that researchers shared their cooperative intentions. These cues included organisational and professional credentials, the role identities and perceived trustworthiness of those involved in recruiting to research, and visible signs of reasonable practice mandated by regulatory systems. Thus participants drew on their understandings of an institutional field that was much broader than that of research alone. We propose that the social organisation of research is fundamental to the judgements people make about cooperation with research. Cooperation may be a more useful way of thinking about how people come to engage in collaboratively oriented actions such as research participation, rather than currently dominant individualistic models. Attention to the institutional context of research is critical to understanding what makes cooperation possible, and has important implications for the design of regulatory regimes for research.3

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“…Altruismus und Eigennutz erscheinen als Motive für eine Studienteilnahme gleichwertig [3][4][5][6][7][8]. Das konkrete Studiendesign spielt beim Entscheidungsprozess eine wichtige Rolle; Patienten erklären sich eher bereit, an einer Studie mit offenem Design teilzunehmen [9]. Barrieren stellen hingegen Verblindung, Randomisierung sowie die Plazebobehandlung einer Kontrollgruppe dar [10,11].…”

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Bereitschaft von Patienten zum Einschluss in klinische Studien

Gaul

Malcherczyk²,

Schmidt³

et al. 2010

Med Klin

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Physicians recruiting patients for clinical studies should be well prepared about details of the study and should have adequate time for an introductory conversation in a quiet environment. Including relatives into the introductory conversation may enhance the motivation and therefore the success of recruitment. Potential advantages of a participation for the own treatment and additionally for other patients should be highlighted. Possible side effects should be explained in a realistic manner.

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Trials and tribulations: Understanding motivations for clinical research participation amongst adults with cystic fibrosis

Cited by 44 publications

References 28 publications

Volunteer Research Subjects’ Experience of Participation in Research on a Novel Diagnostic Technology for Breast Cancer

Volunteer Research Subjects’ Experience of Participation in Research on a Novel Diagnostic Technology for Breast Cancer

Why do people cooperate with medical research? Findings from three studies

Bereitschaft von Patienten zum Einschluss in klinische Studien

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