Parental perceptions regarding the disclosure and non-disclosure of hereditary breast and ovarian (HBO) test results to minors
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Date
2014-01-14
Authors
Seenandan-Sookdeo, Kendra-Ann I.
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Abstract
Background: A positive BRCA1/2 carrier status impacts an individual on various levels with implications to an entire family due to shared family genes. A gap exists in the research literature in the area of parental disclosure and non-disclosure of genetic test results to younger offspring. Additional studies in the area of parental disclosure and non-disclosure will help clinicians to better support parents and children during this process.
Purpose: The purpose of this qualitative hermeneutic phenomenological research study was to attain an understanding of the lived experience of parents’ perceptions regarding the disclosure and non-disclosure of a positive BRCA1/2 test result to minors.
Results: The essence of the lived experience of the 15 study participants was a parental desire for healthcare professionals to take the BRCA1/2 conversation a step further which was uncovered in the seven research themes.
Discussion: For the study participants interviewed, stories reflected an identified need for axillary support that specifically pertained to the disclosure and non-disclosure decision-making process. Findings suggest ways in which parental support may be coordinated though intra and interdisciplinary team approaches to patient care.
Implications: The findings from this study support the need for mixed methods studies
of parental disclosure and non-disclosure of BRCA1/2 test results to minors.
Specifically, studies assessing positive BRCA1/2 males and individuals from our gay community, members from our lower socioeconomic and diverse ethnic community, and fathers and children’s perceptions regarding the disclosure of parental BRCA1/2 test results to minors are warranted.
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Keywords
BRCA1/2, Breast, Ovarian, Hereditary