The ticking time-bomb. Health literacy in the context of genetic risk prediction in familial breast-ovarian cancer; A qualitative study
Personalised methods of predicting breast and ovarian cancer risk through genetic testing increasingly demand a person’s understanding and critical appraisal of risk-related information, as well as decision-making and acting upon disclosure of a positive test result. The current study aims at unders...
Saved in:
| Main Authors: | , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
KeAi Communications Co., Ltd.
2021-10-01
|
| Series: | Qualitative Research in Medicine & Healthcare |
| Subjects: | |
| Online Access: | https://www.pagepressjournals.org/index.php/qrmh/article/view/9647 |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1850055818251075584 |
|---|---|
| author | Mariya Lorke Laura Harzheim Kerstin Rhiem Christiane Woopen Saskia Jünger |
| author_facet | Mariya Lorke Laura Harzheim Kerstin Rhiem Christiane Woopen Saskia Jünger |
| author_sort | Mariya Lorke |
| collection | DOAJ |
| description | Personalised methods of predicting breast and ovarian cancer risk through genetic testing increasingly demand a person’s understanding and critical appraisal of risk-related information, as well as decision-making and acting upon disclosure of a positive test result. The current study aims at understanding health literacy (HL) among persons at risk of developing familial breast-ovarian cancer (FBOC) from a bottom-up perspective—incorporating their viewpoints into the research process. Its qualitative design integrates an ethnographic-narrative approach and findings from 10 narrative interviews with women who have undergone genetic testing, analysed by using reflexive grounded theory. The collected data reveal the entanglement of the women’s perceptions concerning the risk of getting ill, their identity, and their strategies of managing health. The analysis of this interplay provides an empirical basis for approaching HL in its communicative dimension, considering individuals’ understandings of health and illness, and emphasizing the role of critical HL. |
| format | Article |
| id | doaj-art-cddaca83ec114587900a29b90a8ef90b |
| institution | DOAJ |
| issn | 2532-2044 |
| language | English |
| publishDate | 2021-10-01 |
| publisher | KeAi Communications Co., Ltd. |
| record_format | Article |
| series | Qualitative Research in Medicine & Healthcare |
| spelling | doaj-art-cddaca83ec114587900a29b90a8ef90b2025-08-20T02:51:52ZengKeAi Communications Co., Ltd.Qualitative Research in Medicine & Healthcare2532-20442021-10-015210.4081/qrmh.2021.9647The ticking time-bomb. Health literacy in the context of genetic risk prediction in familial breast-ovarian cancer; A qualitative studyMariya Lorke0 Laura Harzheim1 Kerstin Rhiem2 Christiane Woopen3 Saskia Jünger4Cologne Center for Ethics, Rights, Economics, and Social Sciences of Health (CERES), University of Cologne and University Hospital of Cologne, CologneCologne Center for Ethics, Rights, Economics, and Social Sciences of Health (CERES), University of Cologne and University Hospital of Cologne, CologneCenter for Hereditary Breast and Ovarian Cancer, University Hospital Cologne, CologneCologne Center for Ethics, Rights, Economics, and Social Sciences of Health (CERES), University of Cologne and University Hospital of Cologne, Cologne; Research Unit Ethics, Institute for the History of Medicine and Medical Ethics, Faculty of Medicine, University of Cologne and University Hospital of Cologne, CologneCologne Center for Ethics, Rights, Economics, and Social Sciences of Health (CERES), University of Cologne and University Hospital of Cologne, Cologne; Department of Community Health, University of Applied Health Sciences Bochum, BochumPersonalised methods of predicting breast and ovarian cancer risk through genetic testing increasingly demand a person’s understanding and critical appraisal of risk-related information, as well as decision-making and acting upon disclosure of a positive test result. The current study aims at understanding health literacy (HL) among persons at risk of developing familial breast-ovarian cancer (FBOC) from a bottom-up perspective—incorporating their viewpoints into the research process. Its qualitative design integrates an ethnographic-narrative approach and findings from 10 narrative interviews with women who have undergone genetic testing, analysed by using reflexive grounded theory. The collected data reveal the entanglement of the women’s perceptions concerning the risk of getting ill, their identity, and their strategies of managing health. The analysis of this interplay provides an empirical basis for approaching HL in its communicative dimension, considering individuals’ understandings of health and illness, and emphasizing the role of critical HL.https://www.pagepressjournals.org/index.php/qrmh/article/view/9647Health literacyrisknarrative interviewsreflexive grounded theory |
| spellingShingle | Mariya Lorke Laura Harzheim Kerstin Rhiem Christiane Woopen Saskia Jünger The ticking time-bomb. Health literacy in the context of genetic risk prediction in familial breast-ovarian cancer; A qualitative study Qualitative Research in Medicine & Healthcare Health literacy risk narrative interviews reflexive grounded theory |
| title | The ticking time-bomb. Health literacy in the context of genetic risk prediction in familial breast-ovarian cancer; A qualitative study |
| title_full | The ticking time-bomb. Health literacy in the context of genetic risk prediction in familial breast-ovarian cancer; A qualitative study |
| title_fullStr | The ticking time-bomb. Health literacy in the context of genetic risk prediction in familial breast-ovarian cancer; A qualitative study |
| title_full_unstemmed | The ticking time-bomb. Health literacy in the context of genetic risk prediction in familial breast-ovarian cancer; A qualitative study |
| title_short | The ticking time-bomb. Health literacy in the context of genetic risk prediction in familial breast-ovarian cancer; A qualitative study |
| title_sort | ticking time bomb health literacy in the context of genetic risk prediction in familial breast ovarian cancer a qualitative study |
| topic | Health literacy risk narrative interviews reflexive grounded theory |
| url | https://www.pagepressjournals.org/index.php/qrmh/article/view/9647 |
| work_keys_str_mv | AT mariyalorke thetickingtimebombhealthliteracyinthecontextofgeneticriskpredictioninfamilialbreastovariancanceraqualitativestudy AT lauraharzheim thetickingtimebombhealthliteracyinthecontextofgeneticriskpredictioninfamilialbreastovariancanceraqualitativestudy AT kerstinrhiem thetickingtimebombhealthliteracyinthecontextofgeneticriskpredictioninfamilialbreastovariancanceraqualitativestudy AT christianewoopen thetickingtimebombhealthliteracyinthecontextofgeneticriskpredictioninfamilialbreastovariancanceraqualitativestudy AT saskiajunger thetickingtimebombhealthliteracyinthecontextofgeneticriskpredictioninfamilialbreastovariancanceraqualitativestudy AT mariyalorke tickingtimebombhealthliteracyinthecontextofgeneticriskpredictioninfamilialbreastovariancanceraqualitativestudy AT lauraharzheim tickingtimebombhealthliteracyinthecontextofgeneticriskpredictioninfamilialbreastovariancanceraqualitativestudy AT kerstinrhiem tickingtimebombhealthliteracyinthecontextofgeneticriskpredictioninfamilialbreastovariancanceraqualitativestudy AT christianewoopen tickingtimebombhealthliteracyinthecontextofgeneticriskpredictioninfamilialbreastovariancanceraqualitativestudy AT saskiajunger tickingtimebombhealthliteracyinthecontextofgeneticriskpredictioninfamilialbreastovariancanceraqualitativestudy |