Uncertainty in consultations about genetic testing for cancer: an explorative observational study

PATIENT EDUCATION AND COUNSELING

卷:101

Article

Medendorp, Niki M.^1,2,3  Hillen, Marij A.^1,2,3  Murugesu, Laxsini¹  Aalfs, Cora M.^2,4,5  Stiggelbout, Anne M.⁶  Smets, Ellen M. A.^1,2,3 

[1] Univ Amsterdam, Amsterdam UMC, Dept Med Psychol, POB 22700, NL-1100 DE Amsterdam, Netherlands

[2] Amsterdam Publ Hlth Res Inst, Amsterdam, Netherlands

[3] Canc Ctr Amsterdam, Amsterdam, Netherlands

[4] Univ Amsterdam, Amsterdam UMC, Dept Clin Genet, Amsterdam, Netherlands

[5] Vrije Univ Amsterdam, Amsterdam UMC, Dept Clin Genet, Amsterdam, Netherlands

[6] Leiden Univ, Med Ctr, Dept Biomed Data Sci, Med Decis Making, Leiden, Netherlands

关键词: Uncertainty;    Cancer genetic counseling;    Counselor;    Counselee;   

DOI  :  10.1016/j.pec.2018.08.002

来源: Elsevier

【 摘 要 】

Objective: Persons seeking cancer genetic counseling mainly aim to obtain information and certainty about their medical situation. However, the information that counselees receive often involves many uncertainties. To develop strategies to enable optimal communication about uncertainties, the spectrum of uncertainty expressed within cancer genetic counseling needs to be established. This study aimed to gain insight into the uncertainties verbally expressed by counselors and counselees. Methods: Twenty-five consultations were audiotaped, transcribed and qualitatively analyzed. A coding scheme identifying all uncertainties was developed parallel to the coding of the transcripts. Results: Several uncertainties were identified varying in their source (i.e. the cause of uncertainty) and the issues involved (i.e. the topic to which uncertainty pertained). The main sources of uncertainty were the unpredictability of the future and a lack of knowledge. Counselees also expressed uncertainty related to the amount and complexity of the information. Counselors expressed uncertainties mainly related to scientific issues, whereas counselees' uncertainty mainly related to personal and practical issues. Conclusion: A wide range of uncertainties was expressed by both groups. Counselors differ from counselees in the degree and types of uncertainty they express. Practice implications: Counselors should address scientific uncertainties during genetic counseling to increase awareness and understanding in counselees. Practice implications: Counselors should address scientific uncertainties during genetic counseling to increase awareness and understanding in counselees. (C) 2018 Elsevier B.V. All rights reserved.

【 授权许可】

Free