Parental Decision Making Regarding the Disclosure or Nondisclosure of a Mutation-Positive BRCA1/2 Test Result to Minors

Purpose/Objectives: To gain insight into parental decision making regarding the disclosure or nondisclosure of a mutation-positive BRCA1/2 test result to minors.

Research Approach: A qualitative study based on Heidegger hermeneutic phenomenology was undertaken to explore the lived experience of parental decision making regarding high-risk BRCA1/2 disclosure.

Setting: The study’s recruitment site was a western Canadian hereditary breast and ovarian cancer clinic.

Participants: Fifteen female mutation-positive BRCA1/2 carriers who had at least one child aged 6–18 years.

Methodologic Approach: The use of a demographic questionnaire, semistructured interviews, and conversation summaries were employed to gain an understanding of participants’ lived experience. van Manen’s selective approach was used to conduct a thematic analysis.

Findings: Collectively, parents wanted clinicians to discuss implications of disclosing and not disclosing a mutation-positive BRCA1/2 test result to minors in greater detail. The findings were categorized under the following emergent themes: influential factors, parental decision making, supportive resources, the inner circle, knowledge deficit, and parental recommendations.

Conclusions: Participants’ stories identified the need for auxiliary support pertaining to the decision-making process and suggested ways in which parental support may be coordinated.

Interpretation: Oncology nurses with advanced genetics training should assist mutation-positive BRCA1/2 carriers in meeting their genetic risk information needs; this requires nurses to stay informed about a multitude of issues that affect this population of patients.