Cargando…

Understanding the Needs of Young Women Regarding Breast Cancer Risk Assessment and Genetic Testing: Convergence and Divergence among Patient-Counselor Perceptions and the Promise of Peer Support

Young women from hereditary breast and ovarian cancer (HBOC) families face a series of medical decisions regarding their cancer risk management and integrating this information into their life planning. This presents unique medical and psychosocial challenges that exist without comprehensive interve...

Descripción completa

Detalles Bibliográficos
Autores principales: Evans, Chalanda, Hamilton, Rebekah J., Tercyak, Kenneth P., Peshkin, Beth N., Rabemananjara, Kantoniony, Isaacs, Claudine, O’Neill, Suzanne C.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2016
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5041036/
https://www.ncbi.nlm.nih.gov/pubmed/27417623
http://dx.doi.org/10.3390/healthcare4030035
_version_ 1782456330718543872
author Evans, Chalanda
Hamilton, Rebekah J.
Tercyak, Kenneth P.
Peshkin, Beth N.
Rabemananjara, Kantoniony
Isaacs, Claudine
O’Neill, Suzanne C.
author_facet Evans, Chalanda
Hamilton, Rebekah J.
Tercyak, Kenneth P.
Peshkin, Beth N.
Rabemananjara, Kantoniony
Isaacs, Claudine
O’Neill, Suzanne C.
author_sort Evans, Chalanda
collection PubMed
description Young women from hereditary breast and ovarian cancer (HBOC) families face a series of medical decisions regarding their cancer risk management and integrating this information into their life planning. This presents unique medical and psychosocial challenges that exist without comprehensive intervention. To help lay the groundwork for intervention, we conducted a qualitative study among young women from HBOC families (N = 12; Mean age = 22) and cancer genetic counselors (N = 12) to explicate domains most critical to caring for this population. Women and counselors were interviewed by telephone. The predominant interview themes included preventative care planning and risk management, decision making around the pros and cons of cancer risk assessment, medical management, and psychosocial stresses experienced. Young women endorsed psychosocial stress significantly more frequently than did counselors. Both groups noted the short- and long-term decision making challenges and the support and conflict engendered among familial relationships. Our results suggest young women value the support they receive from their families and their genetic counselors, but additional, external supports are needed to facilitate adaptation to HBOC risk. In feedback interviews focused on intervention planning with a subset of these young women (N = 9), they endorsed the predominant interview themes discovered as important intervention content, a structure that would balance discussion of medical information and psychosocial skill-building that could be tailored to the young women’s needs, and delivery by trained peers familiar with HBOC risk.
format Online
Article
Text
id pubmed-5041036
institution National Center for Biotechnology Information
language English
publishDate 2016
publisher MDPI
record_format MEDLINE/PubMed
spelling pubmed-50410362016-10-05 Understanding the Needs of Young Women Regarding Breast Cancer Risk Assessment and Genetic Testing: Convergence and Divergence among Patient-Counselor Perceptions and the Promise of Peer Support Evans, Chalanda Hamilton, Rebekah J. Tercyak, Kenneth P. Peshkin, Beth N. Rabemananjara, Kantoniony Isaacs, Claudine O’Neill, Suzanne C. Healthcare (Basel) Article Young women from hereditary breast and ovarian cancer (HBOC) families face a series of medical decisions regarding their cancer risk management and integrating this information into their life planning. This presents unique medical and psychosocial challenges that exist without comprehensive intervention. To help lay the groundwork for intervention, we conducted a qualitative study among young women from HBOC families (N = 12; Mean age = 22) and cancer genetic counselors (N = 12) to explicate domains most critical to caring for this population. Women and counselors were interviewed by telephone. The predominant interview themes included preventative care planning and risk management, decision making around the pros and cons of cancer risk assessment, medical management, and psychosocial stresses experienced. Young women endorsed psychosocial stress significantly more frequently than did counselors. Both groups noted the short- and long-term decision making challenges and the support and conflict engendered among familial relationships. Our results suggest young women value the support they receive from their families and their genetic counselors, but additional, external supports are needed to facilitate adaptation to HBOC risk. In feedback interviews focused on intervention planning with a subset of these young women (N = 9), they endorsed the predominant interview themes discovered as important intervention content, a structure that would balance discussion of medical information and psychosocial skill-building that could be tailored to the young women’s needs, and delivery by trained peers familiar with HBOC risk. MDPI 2016-06-28 /pmc/articles/PMC5041036/ /pubmed/27417623 http://dx.doi.org/10.3390/healthcare4030035 Text en © 2016 by the authors; licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC-BY) license (http://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Evans, Chalanda
Hamilton, Rebekah J.
Tercyak, Kenneth P.
Peshkin, Beth N.
Rabemananjara, Kantoniony
Isaacs, Claudine
O’Neill, Suzanne C.
Understanding the Needs of Young Women Regarding Breast Cancer Risk Assessment and Genetic Testing: Convergence and Divergence among Patient-Counselor Perceptions and the Promise of Peer Support
title Understanding the Needs of Young Women Regarding Breast Cancer Risk Assessment and Genetic Testing: Convergence and Divergence among Patient-Counselor Perceptions and the Promise of Peer Support
title_full Understanding the Needs of Young Women Regarding Breast Cancer Risk Assessment and Genetic Testing: Convergence and Divergence among Patient-Counselor Perceptions and the Promise of Peer Support
title_fullStr Understanding the Needs of Young Women Regarding Breast Cancer Risk Assessment and Genetic Testing: Convergence and Divergence among Patient-Counselor Perceptions and the Promise of Peer Support
title_full_unstemmed Understanding the Needs of Young Women Regarding Breast Cancer Risk Assessment and Genetic Testing: Convergence and Divergence among Patient-Counselor Perceptions and the Promise of Peer Support
title_short Understanding the Needs of Young Women Regarding Breast Cancer Risk Assessment and Genetic Testing: Convergence and Divergence among Patient-Counselor Perceptions and the Promise of Peer Support
title_sort understanding the needs of young women regarding breast cancer risk assessment and genetic testing: convergence and divergence among patient-counselor perceptions and the promise of peer support
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5041036/
https://www.ncbi.nlm.nih.gov/pubmed/27417623
http://dx.doi.org/10.3390/healthcare4030035
work_keys_str_mv AT evanschalanda understandingtheneedsofyoungwomenregardingbreastcancerriskassessmentandgenetictestingconvergenceanddivergenceamongpatientcounselorperceptionsandthepromiseofpeersupport
AT hamiltonrebekahj understandingtheneedsofyoungwomenregardingbreastcancerriskassessmentandgenetictestingconvergenceanddivergenceamongpatientcounselorperceptionsandthepromiseofpeersupport
AT tercyakkennethp understandingtheneedsofyoungwomenregardingbreastcancerriskassessmentandgenetictestingconvergenceanddivergenceamongpatientcounselorperceptionsandthepromiseofpeersupport
AT peshkinbethn understandingtheneedsofyoungwomenregardingbreastcancerriskassessmentandgenetictestingconvergenceanddivergenceamongpatientcounselorperceptionsandthepromiseofpeersupport
AT rabemananjarakantoniony understandingtheneedsofyoungwomenregardingbreastcancerriskassessmentandgenetictestingconvergenceanddivergenceamongpatientcounselorperceptionsandthepromiseofpeersupport
AT isaacsclaudine understandingtheneedsofyoungwomenregardingbreastcancerriskassessmentandgenetictestingconvergenceanddivergenceamongpatientcounselorperceptionsandthepromiseofpeersupport
AT oneillsuzannec understandingtheneedsofyoungwomenregardingbreastcancerriskassessmentandgenetictestingconvergenceanddivergenceamongpatientcounselorperceptionsandthepromiseofpeersupport