Exploring Perceptions of What Genetic Counseling is Amongst Families Affected by Genetic Conditions, Who Have Not Yet Had Genetic Counseling Themselves
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Authors
Cordeiro, Stephanie Briana
Issue Date
2019-05-01
Type
thesis_open
Language
Keywords
Genetics
Other Genetics and Genomics
Alternative Title
Human Genetics Theses
Abstract
This study aimed to understand the perceptions and expectations that individuals who are affected or who have a genetic condition have about genetic counseling. This was a qualitative study that aimed to improve understanding of the layperson’s perception of genetic counseling using interviews with participants. Interviews were conducted at Cardiff University in Cardiff, Wales. Interview transcripts were analyzed using thematic analysis to identify common themes amongst the participants’ perceptions and to assess where these perceptions differ from professional definitions of genetic counseling. Themes were analyzed using the five dimensions of empowerment. The omnipresent theme among the study was the expectation of achieving emotional regulation from the genetic counseling session. The majority of participants indicated that they expect support from their health care providers and this expectation is even more-so in regards to their genetic counselors. The second pervasive theme among participants is the expectation of achieving cognitive control. Patients seek information about their conditions and about general genetics, many because of lack of knowledge about the field. Data from this study could better shape communications between patients and providers and create realistic expectations about what they should expect when they are referred to genetic counseling. Results from this work could help to resolve misconceptions and stigma the layperson has about genetic counseling.