NDLI: Living with Hereditary Non-polyposis Colorectal Cancer; Experiences from and Impact of Genetic Testing

Content Provider	Springer Nature Link
Author	Carlsson, C. Nilbert, M.
Copyright Year	2007
Abstract	Hereditary non-polyposis colorectal cancer (HNPCC) is one of our most common cancer syndromes and an increasing number of individuals live in families with verified hereditary cancer. We conducted an interview study to explore experiences from and perceived impact on life after genetic testing for HNPCC. Three major themes emerged: reactions and emotions, family relations and implications for life. Among the reactions described were suspecting heredity, feelings of guilt, the importance of experiential knowledge, and coping strategies. The impact on family relations was related to perceived responsibility for conveying information, encountering different reactions among family members, and difficulties in communication and relations. The implications described included uncertainty, adaptation, new choices and changes in life, family planning issues, and experiences of surveillance programs. We suggest that the themes and sub-themes identified should be taken into account during genetic counselling in order to facilitate the spread of information and to prepare family members for the impact on life that knowledge about hereditary cancer may have.
Starting Page	811
Ending Page	820
Page Count	10
File Format	PDF
ISSN	10597700
Journal	Journal of Genetic Counseling
Volume Number	16
Issue Number	6
e-ISSN	15733599
Language	English
Publisher	Springer US
Publisher Date	2007-08-18
Publisher Place	Boston
Access Restriction	One Nation One Subscription (ONOS)
Subject Keyword	Hereditary non-polyposis colorectal cancer HNPCC Interview Experiential knowledge Psychological reactions 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

Genetic Counseling Considerations in the Evaluation of Families for Lynch Syndrome—A Review

Validation of a Self-Concept Scale for Lynch Syndrome in Different Nationalities

Informing one’s family about genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): a retrospective exploratory study

Genetic Counseling Outcomes: Perceived Risk and Distress After Counseling for Hereditary Colorectal Cancer

Genetic Testing of Children at Risk for Adult Onset Conditions: When is Testing Indicated?

Facilitating Family Communication About Predictive Genetic Testing: Probands’ Perceptions

Who Is at Risk for Psychological Distress in Genetic Testing Programs for Hereditary Cancer Disorders?

Predictive Genetic Testing for Hereditary Breast and Ovarian Cancer: Psychological Distress and Illness Representations 1 Year Following Disclosure

The Relationship Between Psychological Distress and Personality in Women from Families with Familial Breast/Ovarian or Hereditary Non-polyposis Colorectal Cancer in the Absence of Demonstrated Mutations

Living with Hereditary Non-polyposis Colorectal Cancer; Experiences from and Impact of Genetic Testing

Similar Documents

Genetic Counseling Considerations in the Evaluation of Families for Lynch Syndrome—A Review

Validation of a Self-Concept Scale for Lynch Syndrome in Different Nationalities

Informing one’s family about genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): a retrospective exploratory study

Genetic Counseling Outcomes: Perceived Risk and Distress After Counseling for Hereditary Colorectal Cancer

Genetic Testing of Children at Risk for Adult Onset Conditions: When is Testing Indicated?

Facilitating Family Communication About Predictive Genetic Testing: Probands’ Perceptions

Who Is at Risk for Psychological Distress in Genetic Testing Programs for Hereditary Cancer Disorders?

Predictive Genetic Testing for Hereditary Breast and Ovarian Cancer: Psychological Distress and Illness Representations 1 Year Following Disclosure

The Relationship Between Psychological Distress and Personality in Women from Families with Familial Breast/Ovarian or Hereditary Non-polyposis Colorectal Cancer in the Absence of Demonstrated Mutations

Living with Hereditary Non-polyposis Colorectal Cancer; Experiences from and Impact of Genetic Testing