Couples' experiences of predictive testing and living with the risk or reality of Huntington disease: A qualitative study

Abstract

A qualitative study, based on family systems theory, was undertaken in order to gain a better understanding of the impact of predictive testing and of living with the risk or reality of Huntington disease (HD), on couple relationships. Semi-structured interviews were conducted with 14 couples; in 9 couples the at-risk partner had undergone testing, and of these, 4 were already affected with HD. At-risk partners in the remaining five couples had not been tested. Interview transcripts were analyzed to obtain a range of themes, which reflect the salient experiences of these couples in relation to HD. Most couples reported that receiving a predictive test result had little or no adverse effect on their relationship. However for two couples who separated after the at-risk partner received a non-carrier result, emotional factors associated with years of living with the HD risk, rather than the result itself, were regarded as having caused irreparable damage to the relationship. For two couples who have remained together since the diagnosis of one partner, loyalty was identified as the main factor contributing to the continuance of the relationship. The separations of the other two couples in which one partner was diagnosed were attributed to emotional distancing, and to the obsessive behavior of the affected partner. The findings of this study highlight both the individuality and the complexity of psychological effects on the intimate relationships of couples who live with the risk or reality of HD, and provide important insights for professionals offering support to these couples.

Impact of Huntington Disease Gene‐Positive Status on Pre‐Symptomatic Young Adults and Recommendations for Genetic Counselors

“…Decruyenaere et al (2004) found that five years after testing positive, most couples reported no change or an improvement in the quality of their relationships. Richards (2004) also found that five years after testing, most couples reported that receiving a positive predictive test result had little or no adverse effect on their relationships.…”

The complexity of reproductive decision-making in asymptomatic carriers of the Huntington mutation

“…Several studies 16,27,28 revealed that the importance of having children overrode all other concerns. The desire to have a healthy child may be an expression of the need to have a normal life and to compensate for the previous suffering, as illustrated in this study.…”

“…In -2004 individuals received a predictive test result; 89 of them were carriers and seven received an equivocal result. Quantitative data on reproductive behaviour have been collected during all follow-up contacts.…”

Identifying gaps in knowledge: A map of the qualitative literature concerning life with a neurological condition

“…Physical and Occupational Therapy in Geriatrics, 25 (2), [33][34][35][36][37][38][39][40][41][42][43][44][45][46][47][48][49][50] Research focus: Maintaining daily activities and occupation ALS Brott, T., Hocking, C., & Paddy, A. (2007).…”