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
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
[51]   Ethical Issues in Conducting Qualitative Research in Online Communities [J].
Roberts, Lynne D. .
QUALITATIVE RESEARCH IN PSYCHOLOGY, 2015, 12 (03) :314-325
[52]   Unsolicited narratives from the Internet: A rich source of qualitative data [J].
Robinson, KM .
QUALITATIVE HEALTH RESEARCH, 2001, 11 (05) :706-714
[53]   DURATION OF ILLNESS IN HUNTINGTONS-DISEASE IS NOT RELATED TO AGE AT ONSET [J].
ROOS, RAC ;
HERMANS, J ;
VEGTERVANDERVLIS, M ;
VANOMMEN, GJB ;
BRUYN, GW .
JOURNAL OF NEUROLOGY NEUROSURGERY AND PSYCHIATRY, 1993, 56 (01) :98-100
[54]   AGE AT ONSET IN HUNTINGTONS-DISEASE - EFFECT OF LINE OF INHERITANCE AND PATIENTS SEX [J].
ROOS, RAC ;
VEGTERVANDERVLIS, M ;
HERMANS, J ;
ELSHOVE, HM ;
MOLL, AC ;
VANDEKAMP, JJP ;
BRUYN, GW .
JOURNAL OF MEDICAL GENETICS, 1991, 28 (08) :515-519
[55]   Huntington's disease: a clinical review [J].
Roos, Raymund A. C. .
ORPHANET JOURNAL OF RARE DISEASES, 2010, 5
[56]  
Sarangi Srikant, 2004, J Genet Couns, V13, P135, DOI 10.1023/B:JOGC.0000018823.60761.e0
[57]   Preimplantation genetic diagnosis for Huntington's disease with exclusion testing [J].
Sermon, K ;
De Rijcke, M ;
Lissens, W ;
De Vos, A ;
Platteau, P ;
Bonduelle, M ;
Devroey, P ;
Van Steirteghem, A ;
Liebaers, I .
EUROPEAN JOURNAL OF HUMAN GENETICS, 2002, 10 (10) :591-598
[58]   Prenatal testing for Huntington's disease: experience within the UK 1994-1998 [J].
Simpson, SA ;
Harper, PS .
JOURNAL OF MEDICAL GENETICS, 2001, 38 (05) :333-335
[59]   A thematic analysis of messages posted by moderators within health-related asynchronous online support forums [J].
Smedley, Richard M. ;
Coulson, Neil S. .
PATIENT EDUCATION AND COUNSELING, 2017, 100 (09) :1688-1693
[60]  
Smedley RM, 2018, Qualitative Research in Psychology, V1, P28