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

Seenandan-Sookdeo KA1, Hack TF2, Lobchuk M3, Murphy L3, Marles S4.

Author information

Abstract

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.

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.