How do partners find out about the risk of Huntington's disease in couple relationships?
J Genet Couns
; 22(3): 336-44, 2013 Jun.
Article
em En
| MEDLINE
| ID: mdl-23297124
ABSTRACT
Whilst a growing body of work has explored family communication about Huntington's disease and how at-risk individuals learn about their risk, the experience of telling a partner and partners' experiences of finding out about this potentially devastating hereditary illness have received little attention. This study describes the experiences of partners in finding out about Huntington's disease and any impact on couple's relationships/marriages. We undertook a thematic analysis of qualitative interviews which explored the dynamics of partners' marriages after predictive testing and partners' views of genetic counseling. A main theme from partners' accounts was how they found out about their spouse's risk of Huntington's disease and the impact this had on marital relations. The analysis revealed four types of disclosure experiences (1) marital secrets; (2) alerting, but not telling; (3) knowing and seeing; (4) marital ignorance. Our findings demonstrate that partners' experiences of (non)disclosure about the risk of HD within marriages is an important factor which contributes to couples' coping or marital problems. Exploring how spouses found out about their partner's risk of HD will illuminate issues about a couple's past and future patterns of communication and their coping strategies. A practical and ethical implication is the extent to which genetic counselors should inform partners about the course and nature of Huntington's disease when a partner is the support person for the individual being tested.
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Características da Família
/
Doença de Huntington
Tipo de estudo:
Etiology_studies
/
Prognostic_studies
/
Qualitative_research
/
Risk_factors_studies
Aspecto:
Ethics
Limite:
Adult
/
Aged
/
Female
/
Humans
/
Male
/
Middle aged
Idioma:
En
Revista:
J Genet Couns
Assunto da revista:
GENETICA MEDICA
Ano de publicação:
2013
Tipo de documento:
Article
País de afiliação:
Reino Unido