NDLI: Knowledge and Expectations of Women Undergoing Cancer Genetic Risk Assessment: A Qualitative Analysis of Free-Text Questionnaire Comments

Content Provider	Springer Nature Link
Author	Phelps, C. Wood, F. Bennett, P. Brain, K. Gray, J.
Copyright Year	2007
Abstract	Individuals undergoing cancer genetic risk assessment have been found to have a poor understanding of the process, which may affect how well they cope with learning their risk. This paper reports free-text data from questionnaires completed by women undergoing a randomised controlled trial of a psychological intervention. Of the 268 women undergoing genetic assessment for familial breast/ovarian cancer risk who were invited to take part in the trial, 157 women returned research questionnaires. Of these, 97 women provided free-text comments upon referral to a cancer genetics clinic, 62 provided comments whilst waiting for risk information (average, moderate or high), and 36 women provided comments following notification of risk. This paper reports a thematic analysis of the free-text data. Themes reflected individuals’ poor knowledge and uncertainty about genetic risk assessment. How well individuals responded to learning their risk depended upon whether expectations had been met. Regardless of risk, individuals undergoing cancer genetic risk assessment are likely to benefit from increased information about its process and timescales, and access to increased psychological support. Free-text comments can provide valuable data about individuals’ expectations and knowledge of genetics services.
Starting Page	505
Ending Page	514
Page Count	10
File Format	PDF
ISSN	10597700
Journal	Journal of Genetic Counseling
Volume Number	16
Issue Number	4
e-ISSN	15733599
Language	English
Publisher	Springer US
Publisher Date	2007-02-23
Publisher Place	Boston
Access Restriction	One Nation One Subscription (ONOS)
Subject Keyword	Ethics Gynecology Clinical Psychology Public Health/Gesundheitswesen Human Genetics
Content Type	Text
Resource Type	Article
Subject	Genetics (clinical)

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

Correlates of Depressive Symptoms Among Women Seeking Cancer Genetic Counseling and Risk Assessment at a High-Risk Cancer Clinic

The Impact of Breast Cancer Genetic Risk Assessment on Intentions to Perform Cancer Surveillance Behaviors

Genetic Cancer Risk Assessment and Counseling: Recommendations of the National Society of Genetic Counselors

Genetic Testing and Parkinson Disease: Assessment of Patient Knowledge, Attitudes, and Interest

Cancer Risk Assessment and Genetic Counseling in an Academic Medical Center: Consultands' Satisfaction, Knowledge, and Behavior in the First Year

The Role of Expectations in Effective Genetic Counseling

How Do Geneticists and Genetic Counselors Counsel Women from High-Risk Breast Cancer Families?

Qualitative Cancer Genetic Counseling Research, Part I: Ethnography in a Cancer Clinic

Risk Perception Among Women at Risk for Hereditary Breast and Ovarian Cancer

Knowledge and Expectations of Women Undergoing Cancer Genetic Risk Assessment: A Qualitative Analysis of Free-Text Questionnaire Comments

Similar Documents

Correlates of Depressive Symptoms Among Women Seeking Cancer Genetic Counseling and Risk Assessment at a High-Risk Cancer Clinic

The Impact of Breast Cancer Genetic Risk Assessment on Intentions to Perform Cancer Surveillance Behaviors

Genetic Cancer Risk Assessment and Counseling: Recommendations of the National Society of Genetic Counselors

Genetic Testing and Parkinson Disease: Assessment of Patient Knowledge, Attitudes, and Interest

Cancer Risk Assessment and Genetic Counseling in an Academic Medical Center: Consultands' Satisfaction, Knowledge, and Behavior in the First Year

The Role of Expectations in Effective Genetic Counseling

How Do Geneticists and Genetic Counselors Counsel Women from High-Risk Breast Cancer Families?

Qualitative Cancer Genetic Counseling Research, Part I: Ethnography in a Cancer Clinic

Risk Perception Among Women at Risk for Hereditary Breast and Ovarian Cancer

Knowledge and Expectations of Women Undergoing Cancer Genetic Risk Assessment: A Qualitative Analysis of Free-Text Questionnaire Comments