Over the past year, the Genetics Services Research Unit has completed several investigations in genetic counseling related research. ? In follow up to the results of a prior study into the prevalence of ambivalence among 220 women facing decisions about invasive prenatal testing found that found that about a third of women have significant levels of ambivalence, a proof of principle study was designed. In this study two interventions aimed at reducing ambivalence, thereby enhancing informed choice about prenatal testing are being explored for their acceptability and feasibility. Data collection is ongoing.? A study of 191 people at risk for Huntington's disease revealed that the majority of individuals disclosed their HD status, the inheritance of HD, the features of HD, and their feelings and concerns about their HD status to the majority of members within their social network. However, the extent of disclosure about HD and ones status varied within the population, with evidence for selective disclosure and nondisclosure. Multiple regression analysis indicated that the extent of disclosure about HD status along with number of years an individual had known their HD status predict adaptation to living at risk for HD. This study demonstrates the complex nature of HD disclosure to others and also reveals an important association between the extent of disclosure about ones status and adaptation to living at risk. These results suggest ways that HCPs can assist individuals in devising disclosure plans and strategies to cope with the consequences of their disclosure decisions. ? In a final study on the adaptation of caretakers of children with pervasive developmental disorders we used a cross-sectional design to investigate the relationships between control beliefs, causal attributions, coping strategies and adaptation among caregivers of children with PDD. The main outcome measure was adaptation. Study design was informed by Lazarus and Folkmans Transactional Model of Stress and Coping. Among the 324 respondents, the majority was female (95%), married (80%), had completed college (70%), were white (92%) and had an income greater than $70,000 (51%). On average, the children had been diagnosed with a PDD five years ago. Caregivers felt that they had a moderate amount of control over all aspects of their childs life, but reported having the most control over their childs medical care and treatment. Multivariate analysis revealed that higher long-term course control and control by others, problem-focused coping, and controllable causal attributions were associated with greater levels of adaptation. Though being a caregiver to a child with PDD has sometimes been characterized as a situation with limited opportunities for control, these caregivers reported many ways that they find control over many aspects of their childs symptoms and care. Control beliefs, particularly over long-term course, may serve as a potential target for clinical interventions aimed at enhancing adaptation. Furthermore, problem-focused coping was a significant predictor of adaptation for the caregivers in this study, which may indicate the importance of these coping strategies, particularly in the years immediately following a diagnosis.
Showing the most recent 10 out of 14 publications
