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Psychological and Behavioral Aspects of Receiving Genetic Counseling for Hereditary Cancer
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
2010 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aims of this thesis were to investigate psychological and behavioral effects of receiving cancer genetic counseling for breast, ovarian and colorectal cancer and/or with a family history of these cancer types and to determine whether counselees’ informational needs were met.

Study I was performed 3-7 years post-counseling. Participants (n=214) reported a relatively high level of anxiety but a low level of depression compared to cancer patients in general. However, there was no indication that the distress experienced was due to the counseling. Moderate changes in life and family relations, high level of adherence to recommended controls and satisfaction was reported. Study II was a randomized control trial (RCT) intervention study which involved 147 counselees. An increase in the level of knowledge and correct estimation of personal risk was reported in both the intervention and control groups, although this increase declined at later follow-up. Enhanced information led to significantly greater satisfaction with the given information, and the way of informing relatives. Most counselees had shared information with their at-risk relatives. Study III focused on sharing information with at-risk relatives among participants in study II and their relatives (n=81). Counselees were interviewed and answered a questionnaire, whilst their relatives only answered the questionnaire. Counselees reported positive/neutral feelings about communicating genetic information and mostly interpreted their relatives’ reactions as positive/ neutral. Also, approximately 50% of relatives reported positive/neutral reactions and were generally satisfied with the received information. Study IV was conducted in Sweden and Norway based on 235 counselees. Counselees expected counselors to be skillful and thoughtful, take them seriously and provide risk estimations and medical information. Most important issues to counselees were satisfactorily addressed by the counselors. Analyzing importance rankings resulted in five categories of needs: a need for facts, caring communication and medical information, need for understanding and support in sharing genetic information, practical care and medical/practical information.

In conclusion, no adverse psychological or behavioral effect on counselees was observed. Apparently, genetic counseling is managed properly and counselors successfully address counselees’ needs. Providing extended information does not seem necessary, however, tailoring information to individual counselees needs may create a more effective counseling.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis , 2010. , p. 105
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Social Sciences, ISSN 1652-9030 ; 59
Keywords [en]
Hereditary cancer, genetic counseling, psychological distress, adherence, genetic knowledge, risk perception, sharing genetic information, at-risk relatives’ experiences, informational needs
National Category
Medical Genetics Public Health, Global Health, Social Medicine and Epidemiology
Research subject
Psychology; Genetics
Identifiers
URN: urn:nbn:se:uu:diva-128870ISBN: 978-91-554-7845-2 (print)OAI: oai:DiVA.org:uu-128870DiVA, id: diva2:331950
Public defence
2010-09-10, Auditorium Minus, Gustavianum, Uppsala, 09:15 (Swedish)
Opponent
Supervisors
Available from: 2010-08-20 Created: 2010-07-29 Last updated: 2018-01-12Bibliographically approved
List of papers
1. Cancer genetic counselees' self-reported psychological distress, changes in life, and adherence to recommended surveillance programs 3-7 years post counseling
Open this publication in new window or tab >>Cancer genetic counselees' self-reported psychological distress, changes in life, and adherence to recommended surveillance programs 3-7 years post counseling
2009 (English)In: Journal of Genetic Counseling, ISSN 1059-7700, E-ISSN 1573-3599, Vol. 18, no 2, p. 185-194Article in journal (Refereed) Published
Abstract [en]

The aim of the present cross-sectional study was to investigate psychological distress, changes in life, adherence to surveillance programs and satisfaction with cancer genetic counseling based on Swedish participants' self-reported data. A total of 218 probands (72% response rate) affected by breast, breast/ovarian or colorectal cancer and/or a family history of cancer were surveyed 3-7 years after receiving cancer genetic counseling. Participants reported a relatively high level of anxiety and a low level of depression. Probands affected by colorectal cancer reported a higher level of depression than did non-affected individuals with a family history of colorectal cancer. Overall, the participants reported moderate changes in family relations, priorities and appreciation of daily life activities. The majority of at-risk probands reportedly adhered to recommended surveillance programs. The mean level of satisfaction with cancer genetic counseling was high. About half of the participants would have accepted additional counseling sessions, contact with a psychologist or further help concerning informing family members. The present results indicate no adverse effects of genetic counseling, but they do suggest that typical counseling procedures could be improved by provision of additional psychosocial support.

Keywords
Hereditary cancer, Cancer genetic counseling, Psychological distress, Changes in life, Adherence
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:uu:diva-101275 (URN)10.1007/s10897-008-9203-y (DOI)000267257500012 ()19212811 (PubMedID)
Available from: 2009-04-22 Created: 2009-04-22 Last updated: 2017-12-13Bibliographically approved
2. Does enhanced information at cancer genetic counseling improve counselees' knowledge, risk perception, satisfaction and negotiation of information to at-risk relatives?: a randomized study
Open this publication in new window or tab >>Does enhanced information at cancer genetic counseling improve counselees' knowledge, risk perception, satisfaction and negotiation of information to at-risk relatives?: a randomized study
2009 (English)In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 48, no 7, p. 999-1009Article in journal (Refereed) Published
Abstract [en]

PURPOSE: The aim of the present randomized intervention study was to investigate the effect of receiving extended cancer genetic information on counselees' knowledge, risk perception, information sharing and satisfaction with the service. METHODS: In total, 147 counselees, affected by cancer and/or a family history of cancer, were randomized to extended or standard information. The levels of counselees' knowledge and personal risk estimations were measured at four time points. In addition, counselees' satisfaction with the counseling and sharing of the information to at-risk relatives was assessed. The intervention included meeting a specialist nurse, learning the breaking bad news method, receiving written material and video-taped counseling sessions. RESULTS: A significant increase in the level of knowledge in participants in the "breast cancer group" regardless of the randomization was observed over time. The correct estimation of personal risk increased significantly in both groups after two weeks, but declined at the eight month follow-up. Most of the participants had informed at-risk relatives about their visit at the cancer genetic clinic. The majority of respondents in both groups were highly satisfied with the counseling. The only observed effects of the intervention were that counselees in the intervention group were significantly more satisfied with the content of the given information and with the way of informing relatives. CONCLUSION: Apparently, the current genetic counseling is managed properly and extended information does not seem necessary in all cases. However, some counselees need additional sessions.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:uu:diva-112092 (URN)10.1080/02841860903104137 (DOI)000271228400008 ()19636983 (PubMedID)
Available from: 2010-01-08 Created: 2010-01-08 Last updated: 2017-12-12Bibliographically approved

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