Goals, benefits, and outcomes of genetic counseling: client and genetic counselor assessment.
Most studies of outcomes of genetic counseling have focused on client knowledge, reproductive plans and behavior, or satisfaction. Other measures of the "value" of genetic counseling are needed to guide research assessing the impact of genetic counseling on individuals and populations, as well as to improve the process of providing care. To obtain input from providers, we conducted telephone interviews with six experienced genetic counselors, and then we held a focus group with 10 additional genetic counselors from a variety of practice settings. To obtain input from consumers, telephone interviews were also conducted with 19 past clients of these participating counselors. We found that counselor goals focus on meeting clients' needs, usually educating and providing psychosocial support. Clients often had few goals going into a session because they were unaware of what would be discussed or how the session would be structured. They usually did not expect to receive "counseling," and when they did, it was a welcome surprise. Both clients and counselors commented that a positive interpersonal interaction and "connecting" are primary measures of success. All clients appreciated the large amount of time spent with the counselor, and the manner (clear, comprehensive, and unhurried) of providing information. Many clients said that genetic counseling resulted in improved communication with their partners and other family members. Clients view the counselor as an "expert" and value the counselor as an on-going resource for both information and support. These "outcomes"f genetic counseling need to be assessed, and new measures must be developed.
Bernhardt
B A
BA
Genetics and Public Policy Studies, Department of Pediatrics, Johns Hopkins School of Medicine, Baltimore, Maryland 21205, USA. bbernhar@welch.jhu.edu
Biesecker
B B
BB
Mastromarino
C L
CL
D000328:Adult; D005069:Evaluation Studies as Topic; D005260:Female; D017144:Focus Groups; D005817:Genetic Counseling / Q000379:methods*; D030342:Genetic Diseases, Inborn / Q000517:prevention & control / Q000523:psychology; D006302:Health Services Research; D006801:Humans; D008297:Male; D008875:Middle Aged