Adaptation to being at-risk for Huntington's Disease and the availability of genetic testing: application of a stress and coping model

Abstract

This study examined the utility of a stress/coping model in explaining adaptation in two groups of people at-risk for Huntington's Disease (HD): those who have not approached genetic testing services (non-testees) and those who have engaged a testing service (testees). The aims were (1) to compare testees and non-testees on stress/coping variables, (2) to examine relations between adjustment and the stress/coping predictors in the two groups, and (3) to examine relations between the stress/coping variables and testees' satisfaction with their first counselling session. Participants were 44 testees and 40 non-testees who completed questionnaires which measured the stress/coping variables: adjustment (global distress, depression, health anxiety, social and dyadic adjustment), genetic testing concerns, testing context (HD contact, experience, knowledge), appraisal (control, threat, self-efficacy), coping strategies (avoidance, self-blame, wishful thinking, seeking support, problem solving), social support and locus of control. Testees also completed a genetic counselling session satisfaction scale. As expected, non-testees reported lower self-efficacy and control appraisals, higher threat and passive avoidant coping than testees. Overall, results supported the hypothesis that within each group poorer adjustment would be related to higher genetic testing concerns, contact with HD, threat appraisals, passive avoidant coping and external locus of control, and lower levels of positive experiences with HD, social support, internal locus of control, self-efficacy, control appraisals, problem solving, emotional approach and seeking social support coping. Session satisfaction scores were positively correlated with dyadic adjustment, problem solving and positive experience with HD, and inversely related to testing concerns, and threat and control appraisals. Findings support the utility of the stress/coping model in explaining adaptation in people who have decided not to seek genetic testing for HD and those who have decided to engage a genetic testing service.

Acknowledgements

The assistance of staff from the Queensland Clinical Genetics Service, Huntington's Disease Association and Ms Iris Simpson from the Aspley Community Mental Health Service in the recruitment of participants is greatly appreciated. We are also grateful for the valuable feedback from Dr Sandy Taylor on a draft of the paper.

Notes

The main reason for administering the appraisal and genetic testing concerns scales to testees after counselling was to reduce the length of the Time 1 questionnaires due to the additional Agency required paperwork that testees had to complete prior to the first genetic counseling session. As acknowledged in the Discussion section of the article, the fact that the appraisal measures were given to testees after their first genetic counselling session means that differences between testees and non-testees on the appraisal measures control and self-efficacy could be either due to pre-existing group differences or the effects of the genetic counselling.