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Hered Cancer Clin Pract. 2019 Jun 26;17:16. doi: 10.1186/s13053-019-0114-8. eCollection 2019.

Examining intrafamilial communication of colorectal cancer risk status to family members and kin responses to colonoscopy: a qualitative study.

Author information

1
1Ryerson University, 350 Victoria Street, Toronto, ON M5B 2K3 Canada.
2
2Zane Cohen Centre for Digestive Diseases, Sinai Health System, Box 24-60 Murray Street, Toronto, ON M5T 3L9 Canada.
3
3Department of General Surgery, Toronto General Hospital, 200 Elizabeth St., 10EN, Room 206, Toronto, ON M5G 2C4 Canada.
4
4Department of Psychiatry, University of Toronto, 250 College Street, Toronto, ON M5T 1R8 Canada.

Abstract

Background:

First-degree relatives (FDRs) of probands with colorectal cancer (CRC) may be at increased risk of CRC and require colonoscopy. Proband disclosure about this risk and need for colonoscopy is essential for FDRs to take appropriate action. Low colonoscopy rates are reported among FDRs and little is known about the proband disclosure process. A better understanding of the barriers surrounding colonoscopy and disclosure is needed.

Methods:

CRC probands (n = 16) and FDRs (n = 9), recruited from a Canadian CRC Consortium, completed interviews to determine barriers to disclosure and colonoscopy, respectively. Interviews were analyzed using thematic analysis and participants' motivation to disclose to FDRs or undertake colonoscopy was categorized into Stages of Change (i.e., Precontemplation, Contemplation, Preparation, Action, or Maintenance) using the transtheoretical model.

Results:

25% of probands had not disclosed to any first-degree kin and were categorized in the Precontemplation or Contemplation Stage of Change. Barriers to disclosure included lack of information, negative expectations about familial reaction, assuming FDRs were aware of risk or already being screened, dysfunctional family dynamics, and cultural barriers. 75% of FDRs were categorized in the Precontemplation or Contemplation Stage of Change. Barriers included negative perceptions about colonoscopy, health-care provider related factors, practical concerns, and lack of information about CRC, risk, and colonoscopy.

Conclusions:

In the absence of barriers such as cost and accessibility, this Canadian sample still reported several challenges to disclosure and colonoscopy adherence. Future research should explore interventions such as motivational interviewing to improve proband disclosure and to increase FDR adherence to colonoscopy.

KEYWORDS:

Colonoscopy adherence; Colorectal cancer; Disclosure; First-degree relatives; Screening; Stages of change

Conflict of interest statement

Competing interestsThe authors declare that they have no competing interests.

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