Perceived personal control (PPC): A new concept in measuring outcome of genetic counseling

Abstract

Many researchers have tried to establish criteria for the evaluation of genetic counseling and the assessment of its success. Most studies focused on counseling outcomes mainly educational and reproductive variables. In the present study we introduced the concept of "perceived personal control" (PPC), which captures a wider and more meaningful range of effects of genetic counseling. It was found to be central to coping with health threats and to adapting to a broad spectrum of health problems. This study investigated 154 counseling cases. Counselees were requested to complete pre- and post-counseling questionnaires consisting of a knowledge test, measures of PPC, expectations/evaluations of counseling, and satisfaction with the procedure. Comparisons of mean PPC scores before and after counseling showed significant increases. Higher post-counseling PPC was found among counselees who had been given a definite diagnosis, a specific recurrence risk, and been offered prenatal diagnosis. Post-counseling PPC also correlated with knowledge, satisfaction, counseling evaluations, and expectation fulfillment. The findings suggest that PPC is a valid measure for the evaluation of genetic counseling outcomes. The psychometrically reliable scales developed in this study can become helpful tools for assessing genetic counseling both in research and in clinical practice, helping the counselor evaluate the counseling session and focus on the counselees' needs.

Non-invasive prenatal diagnosis for fetal sex determination: benefits and disadvantages from the service users’ perspective

“…For those who received news that the fetus was of the unaffected sex, NIPD was valuable as it provided relief from uncertainty early on in the pregnancy. Control, empowerment and relief from uncertainty have all been identified as patient-desired outcomes of genetic counseling [38][39][40] and therefore support the benefits of NIPD identified in this study. Furthermore, NIPD was found to enhance the decision-making process.…”

Medical management adherence as an outcome of genetic counseling in a pediatric setting

“…3 Studies have evaluated client satisfaction with counseling and "psychological adjustment" by measuring well-being and perceived personal control. [8][9][10][11] Original research article satisfaction and psychological outcomes are not sufficient to quantify the health effects of genetic counseling. Therefore, the usefulness of these outcomes in evaluating the effectiveness of the GC may be limited, and new outcome measures are needed.…”

Uncertainty and perceived personal control among parents of children with rare chromosome conditions: The role of genetic counseling

“…Perceived personal control research typically examines an individual's response to an event that is happening in one's own life, rather than in the life of one's child [Berkenstadt et al, 1999]. Perceived parental control has been used in studies of parents' perceptions of their control over their child's behavior [Bugental and Johnston, 2000;Guzell and Vernon-Feagans, 2004].…”