Genetic testing for Huntington's disease: A thematic analysis of online support community messages

被引：9
作者：
Smedley, Richard M. [1 ]
Coulson, Neil S. [1 ]
机构：
[1] Univ Nottingham, Nottingham, England
来源：
JOURNAL OF HEALTH PSYCHOLOGY | 2021年 / 26卷 / 04期
关键词：
genetic counselling; genetic testing; Huntington’ s disease; online support community; thematic analysis; QUALITATIVE RESEARCH; ETHICAL-ISSUES; HEALTH INFORMATION; PREDICTIVE TEST; SOCIAL SUPPORT; EXPERIENCE; INTERNET; AGE; DIAGNOSIS; UNCERTAINTY;
D O I：
10.1177/1359105319826340
中图分类号：
B849 [应用心理学];
学科分类号：
040203 ;
摘要：
Huntington's disease is a fatal late-onset genetic illness that causes motor, cognitive and psychiatric disorders. Individuals considering genetic testing may benefit from online social support. This study investigates how genetic testing is discussed within health forums. A total of 337 messages written by 58 individuals were analysed using deductive thematic analysis. Discussions examined three themes: deciding to be tested (enquiring about symptoms and starting a new family), preparing for the test (information seeking and attending appointments) and receiving the results (positive and negative results). Forums can reduce the uncertainty of ambiguous symptoms and provide ongoing personalised support before, during and after a genetic test.
引用
收藏
页码：580 / 594
页数：15
相关论文
共 74 条
[1]  
ADAMS P, 1988, AM J HUM GENET, V43, P695
[2]   'A heartbeat moment': qualitative study of GP views of patients bringing health information from the internet to a consultation [J].
Ahluwalia, Sanjiv ;
Murray, Elizabeth ;
Stevenson, Fiona ;
Kerr, Cicely ;
Burns, Jo .
BRITISH JOURNAL OF GENERAL PRACTICE, 2010, 60 (571) :88-94
[3]   Psychological factors behind the lack of participation in online discussions [J].
Amichai-Hamburger, Yair ;
Gazit, Tali ;
Bar-Ilan, Judit ;
Perez, Oren ;
Aharony, Noa ;
Bronstein, Jenny ;
Dyne, Talia Sarah .
COMPUTERS IN HUMAN BEHAVIOR, 2016, 55 :268-277
[4]   The internet: Friend or foe when providing patient education? [J].
Anderson, Amy Shelton ;
Klemm, Paula .
CLINICAL JOURNAL OF ONCOLOGY NURSING, 2008, 12 (01) :55-63
[5]   Ethical aspects of a predictive test for Huntington's Disease: A long term perspective [J].
Andersson, Petra Lilja ;
Petersen, Asa ;
Graff, Caroline ;
Edberg, Anna-Karin .
NURSING ETHICS, 2016, 23 (05) :565-575
[6]   Ethical aspects of undergoing a predictive genetic testing for Huntington's disease [J].
Andersson, Petra Lilja ;
Juth, Niklas ;
Petersen, Asa ;
Graff, Caroline ;
Edberg, Anna-Karin .
NURSING ETHICS, 2013, 20 (02) :189-199
[7]   The right not to know: an autonomy based approach [J].
Andorno, R .
JOURNAL OF MEDICAL ETHICS, 2004, 30 (05) :435-439
[8]   The right not to know and preimplantation genetic diagnosis for Huntington's disease [J].
Asscher, E. ;
Koops, B-J .
JOURNAL OF MEDICAL ETHICS, 2010, 36 (01) :30-33
[9]   22 Years of predictive testing for Huntington's disease: the experience of the UK Huntington's Prediction Consortium [J].
Baig, Sheharyar S. ;
Strong, Mark ;
Rosser, Elisabeth ;
Taverner, Nicola V. ;
Glew, Ruth ;
Miedzybrodzka, Zosia ;
Clarke, Angus ;
Craufurd, David ;
Quarrell, Oliver W. .
EUROPEAN JOURNAL OF HUMAN GENETICS, 2016, 24 (10) :1396-1402
[10]   The Conceptual and Practical Ethical Dilemmas of Using Health Discussion Board Posts as Research Data [J].
Bond, Carol S. ;
Ahmed, Osman Hassan ;
Hind, Martin ;
Thomas, Bronwen ;
Hewitt-Taylor, Jaqui .
JOURNAL OF MEDICAL INTERNET RESEARCH, 2013, 15 (06)
12345678