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

被引：8
|
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 50 条
  • [41] Evaluation of exclusion prenatal and exclusion preimplantation genetic diagnosis for Huntington's disease in the Netherlands
    van Rij, M. C.
    de Die-Smulders, C. E. M.
    Bijlsma, E. K.
    de Wert, G. M. W. R.
    Geraedts, J. P.
    Roos, R. A. C.
    Tibben, A.
    CLINICAL GENETICS, 2013, 83 (02) : 118 - 124
  • [42] The Different Faces of Online Support: A Thematic Analysis of Responses to Help-Seeking Related to Depression and Suicidal Ideation in Public Online Forums
    Bjarehed, Jonas
    Gronberg, Hannes
    Jarlvik, Erik
    CYBERPSYCHOLOGY-JOURNAL OF PSYCHOSOCIAL RESEARCH ON CYBERSPACE, 2023, 17 (05):
  • [43] An Exploratory Analysis of the Chronic Rhinosinusitis Online Support Community
    Ulloa, Ruben
    Tam, Benjamin
    Orozco, Francis Reyes
    Castellanos, Carlos X.
    Chang, Michael T.
    Hur, Kevin
    OTO OPEN, 2023, 7 (04)
  • [44] Genetic testing in Parkinson's disease
    McInerney-Leo, A
    Hadley, DW
    Gwinn-Hardy, K
    Hardy, J
    MOVEMENT DISORDERS, 2005, 20 (01) : 1 - 10
  • [45] Predictive genetic testing for Huntington's disease: Exploring participant experiences of uncertainty and ambivalence between clinic appointments
    Ballard, L. M.
    Doheny, S.
    Dimond, R.
    Lucassen, A. M.
    Clarke, A. J.
    JOURNAL OF GENETIC COUNSELING, 2025, 34 (01)
  • [46] 'I have a feeling I can't speak to anybody': A thematic analysis of communication perspectives in people with Huntington's disease
    Zarotti, Nicolo
    Simpson, Jane
    Fletcher, Ian
    CHRONIC ILLNESS, 2019, 15 (01) : 61 - 73
  • [47] The Right to Ignore Genetic Status of Late Onset Genetic Disease in the Genomic Era; Prenatal Testing for Huntington Disease as a Paradigm
    Erez, A.
    Plunkett, K.
    Sutton, V. R.
    McGuire, A. L.
    AMERICAN JOURNAL OF MEDICAL GENETICS PART A, 2010, 152A (07) : 1774 - 1780
  • [48] The male experience of infertility: a thematic analysis of an online infertility support group bulletin board
    Malik, Sumaira H.
    Coulson, Neil
    JOURNAL OF REPRODUCTIVE AND INFANT PSYCHOLOGY, 2008, 26 (01) : 18 - 30
  • [49] Genetic modifiers of Mendelian disease: Huntington's disease and the trinucleotide repeat disorders
    Holmans, Peter A.
    Massey, Thomas H.
    Jones, Lesley
    HUMAN MOLECULAR GENETICS, 2017, 26 (R2) : R83 - R90
  • [50] Risk perception before and after presymptomatic genetic testing for Huntington's disease: Not always what one might expect
    Stuttgen, Kelsey
    Dvoskin, Rachel
    Bollinger, Juli
    McCague, Allison
    Shpritz, Barnett
    Brandt, Jason
    Mathews, Debra
    MOLECULAR GENETICS & GENOMIC MEDICINE, 2018, 6 (06): : 1140 - 1147
12345