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Why do they do it? : a pilot study towards understanding participant motivation and experience in a large genetic epidemiological study of endometriosis

หน่วยงาน Central Queensland University, Australia

รายละเอียด

ชื่อเรื่อง : Why do they do it? : a pilot study towards understanding participant motivation and experience in a large genetic epidemiological study of endometriosis
นักวิจัย : Treloar, Susan. , Morley, Katherine I. , Taylor, Sandra. , Hall, Wayne.
คำค้น : Endometriosis , Genetic epidemiology. , Endometriosis , 730219 Behaviour and health , 321202 Epidemiology , 321299 Public Health and Health Services not elsewhere classified , Complex etiology -- Endometriosis -- Genetic epidemiology -- Public understanding -- Qualitative research -- Study participants
หน่วยงาน : Central Queensland University, Australia
ผู้ร่วมงาน : -
ปีพิมพ์ : 2550
อ้างอิง : http://hdl.cqu.edu.au/10018/16741 , cqu:3112
ที่มา : Treloar, SA, Morley, KI, Taylor, SD & Hall, WD 2007, 'Why Do They Do It?: A Pilot Study towards Understanding Participant Motivation and Experience in a Large Genetic Epidemiological Study of Endometriosis', Community Genetics, vol. 10, no. 2, pp. 61-71. DOI: 10.1159/000099083
ความเชี่ยวชาญ : -
ความสัมพันธ์ : Community genetics Switzerland : S. Karger AG, 2007. Vol. 10, Iss 2 (2007), p. 61-71 11 pages Refereed 1422-2795 1422-2833 (online) , aCQUIRe [electronic resource] : Central Queensland University Institutional Repository.
ขอบเขตของเนื้อหา : -
บทคัดย่อ/คำอธิบาย :

Objective: This exploratory, pilot study aimed to investigate motivations and reflections of participants who had provided epidemiological information, blood samples and access to clinical records and data in a large genetic epidemiological study of endometriosis, a common multifactorial disorder affecting women. We also aimed to explore understanding of complex genetic or multifactorial conditions in general. Methods: In-depth interviews were conducted with 16 endometriosis study participants with diverse characteristics. Results: Interviewees generally described their participation in the genetic study using altruistic frameworks of reference. Themes that emerged included unquestioning willingness and consent to participate, little concern about privacy issues, desire for more information from the researchers about the condition rather than scientific progress, the benefits of research participation to family communication, and differing ideas about genetic infl uences on endometriosis. Specific features of endometriosis also influenced reflections on research participation experience. Conclusions: As increasing numbers of individuals and families in the community become involved in genetic epidemiological studies of common diseases, more extensive research will be needed to better understand their expectations with a view to improving researchers’ communications with study participants.

บรรณานุกรม :
Treloar, Susan. , Morley, Katherine I. , Taylor, Sandra. , Hall, Wayne. . (2550). Why do they do it? : a pilot study towards understanding participant motivation and experience in a large genetic epidemiological study of endometriosis.
    กรุงเทพมหานคร : Central Queensland University, Australia.
Treloar, Susan. , Morley, Katherine I. , Taylor, Sandra. , Hall, Wayne. . 2550. "Why do they do it? : a pilot study towards understanding participant motivation and experience in a large genetic epidemiological study of endometriosis".
    กรุงเทพมหานคร : Central Queensland University, Australia.
Treloar, Susan. , Morley, Katherine I. , Taylor, Sandra. , Hall, Wayne. . "Why do they do it? : a pilot study towards understanding participant motivation and experience in a large genetic epidemiological study of endometriosis."
    กรุงเทพมหานคร : Central Queensland University, Australia, 2550. Print.
Treloar, Susan. , Morley, Katherine I. , Taylor, Sandra. , Hall, Wayne. . Why do they do it? : a pilot study towards understanding participant motivation and experience in a large genetic epidemiological study of endometriosis. กรุงเทพมหานคร : Central Queensland University, Australia; 2550.