Family Communication Patterns and Challenges of Huntington's Disease Risk, the Decision to Pursue Presymptomatic Testing, and Test Results.
Communication
Huntington’s disease
family relations
genetic testing
Journal
Journal of Huntington's disease
ISSN: 1879-6400
Titre abrégé: J Huntingtons Dis
Pays: Netherlands
ID NLM: 101589965
Informations de publication
Date de publication:
2020
2020
Historique:
pubmed:
23
6
2020
medline:
31
8
2021
entrez:
23
6
2020
Statut:
ppublish
Résumé
Communicating genetic information within families can provide individuals with the emotional support, alert family members to their own potential risk, and strengthen relationships. However, these communications have the potential to cause emotional distress to individuals and family members if family members are informed of a risk they do not wish to know or discuss. Communication about the decision to pursue testing and test results are especially sensitive in Huntington's disease (HD), where individuals often feel strongly about either knowing or not knowing their genetic status. To examine family communication patterns of genetic risk, the decision to pursue testing, and test results not just years, but decades after testing for HD, and examine how family communication of genetic risk information affects family relationships over the long-term. In this qualitative study, 39 semi-structured interviews were conducted with probands who went through genetic testing for HD. Clinic notes from these individuals were also analyzed. Family communication patterns varied based on relation (e.g., significant others, child, extended family) and were influenced by a variety of factors. Sharing with spouses and children had a positive influence on the relationship in most cases. Sharing with extended family members had varying effects on relationships. Negative effects were more likely when family members were in denial, had not pursued testing for themselves, or did not support testing. Communication to significant others and children, should be discussed with and supported in individuals seeking testing for HD, but for extended family members, potential effects on the relationship, emotional distress, and benefits should be discussed and weighed.
Sections du résumé
BACKGROUND
Communicating genetic information within families can provide individuals with the emotional support, alert family members to their own potential risk, and strengthen relationships. However, these communications have the potential to cause emotional distress to individuals and family members if family members are informed of a risk they do not wish to know or discuss. Communication about the decision to pursue testing and test results are especially sensitive in Huntington's disease (HD), where individuals often feel strongly about either knowing or not knowing their genetic status.
OBJECTIVE
To examine family communication patterns of genetic risk, the decision to pursue testing, and test results not just years, but decades after testing for HD, and examine how family communication of genetic risk information affects family relationships over the long-term.
METHODS
In this qualitative study, 39 semi-structured interviews were conducted with probands who went through genetic testing for HD. Clinic notes from these individuals were also analyzed.
RESULTS
Family communication patterns varied based on relation (e.g., significant others, child, extended family) and were influenced by a variety of factors. Sharing with spouses and children had a positive influence on the relationship in most cases. Sharing with extended family members had varying effects on relationships. Negative effects were more likely when family members were in denial, had not pursued testing for themselves, or did not support testing.
CONCLUSION
Communication to significant others and children, should be discussed with and supported in individuals seeking testing for HD, but for extended family members, potential effects on the relationship, emotional distress, and benefits should be discussed and weighed.
Identifiants
pubmed: 32568103
pii: JHD200402
doi: 10.3233/JHD-200402
pmc: PMC7569676
mid: NIHMS1633092
doi:
Types de publication
Journal Article
Research Support, N.I.H., Extramural
Langues
eng
Sous-ensembles de citation
IM
Pagination
265-274Subventions
Organisme : NHGRI NIH HHS
ID : R01 HG008045
Pays : United States
Organisme : NIGMS NIH HHS
ID : T32 GM007814
Pays : United States
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