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Insecurities of women regarding breast cancer research: a qualitative study.

ABSTRACT: OBJECTIVES: Only 1.2%-11% of all potential study participants participate in cancer studies. Low participation rates can result in bias or in a failure to obtain data saturation. Subject-scientific psychology assumes that reasons for acting are based on individual premises. The objective of this study was to render reproducible individual reasons of female breast cancer patients to participate or not participate in breast cancer studies using a qualitative approach. METHODS: Problem-based interviews were conducted with female breast cancer patients. The selection of interview partners continued until theoretical data saturation was achieved. RESULTS: As main arguments against participation emotional overload and too many medication side-effects were stated. Improvement of health-related values, long-term protection and comprehensive follow-up exams were stated as arguments for participation. Trust in the attending physician was mentioned as influencing both participation and non-participation. CONCLUSIONS: A significant influential factor determining willingness to participate in studies was one's contentment with patient-physician communication. In order to guarantee an adequate patient decision-making process, keeping existing standards for patient briefings is absolutely mandatory.

SUBMITTER: Habersack M

PROVIDER: S-EPMC3847121 | biostudies-literature | 2013

REPOSITORIES: biostudies-literature

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Insecurities of women regarding breast cancer research: a qualitative study.

Habersack Marion M Luschin Gero G

PloS one 20131202 12

<h4>Objectives</h4>Only 1.2%-11% of all potential study participants participate in cancer studies. Low participation rates can result in bias or in a failure to obtain data saturation. Subject-scientific psychology assumes that reasons for acting are based on individual premises. The objective of this study was to render reproducible individual reasons of female breast cancer patients to participate or not participate in breast cancer studies using a qualitative approach.<h4>Methods</h4>Problem ...[more]

PMID: 24312584

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Project description:BACKGROUND:Protecting the privacy of research participants is widely recognized as one of the standard ethical requirements for clinical research. It is unknown, however, how research professionals regard concepts of privacy as well as the situations in the research setting that require privacy protections. The aim of this study was to explore the views of research professionals from Arab countries regarding concepts and scope of privacy that occur in clinical research. METHODS:We adopted an exploratory qualitative approach by the use of focus group discussions. We recruited individuals involved in research from Egypt and Morocco. We analyzed focus group data via a constant comparison approach, which consisted of close reading of the transcribed interviews followed by coding and then determining themes and subthemes. RESULTS:Between August 2016 and July 2018, we conducted nine focus group discussions. Respondents discussed several privacy issues that occurred before the research began (e.g., recruitment practices); during research (e.g., data collection and physical exams), and after the research (e.g., secondary use of data and data sharing). Respondents revealed their perspectives of patients towards privacy in the clinical and research settings and mentioned that patients are more likely to permit access to their privacy in the clinical setting compared with research setting due to the existence of benefits and trust in clinical care. Respondents also recommended training regarding data protections for individuals involved in research. CONCLUSIONS:Our study shows that research professionals discussed a range of privacy issues that are present during the different stages of research. We recommend 1) development of standards regarding privacy protections during recruitment efforts; 2) additional training for individuals involved in research regarding best practices with data security in secondary research; 3) a quantitative study involving investigators and REC members to determine their knowledge, attitudes and practices regarding privacy issues that occur in research; and 4) a quantitative study involving patients to elicit their views regarding their privacy concerns in research.

Project description:ObjectiveInternationally recognised specialist breast cancer scientists, clinicians and healthcare professionals have published breast cancer research gaps that are informing research funding priorities in the UK and worldwide. We aimed to determine the breast cancer research priorities of the public to compare with those identified by clinicians and scientists.DesignWe conducted a qualitative study and thematic analysis using 'listening events' where patients with breast cancer and public representatives used a patient's breast cancer journey to identify research themes.Participants and settingFemale participants were recruited from attendees at participating hospitals and support groups in the northwest of England, including patients, their family and friends as well as staff at a local retail centre.InterventionA framework approach was used to analyse transcribed discussions until thematic saturation was reached.Main outcome measuresBreast cancer research priorities were identified from participant discussions and compared with the published gaps identified by scientists and healthcare professionals.ResultsThematic saturation was reached after 27 female participants participated in listening events. Our participants consistently focused on improved methods of dissemination of information and improving education on the signs and symptoms of breast cancer. This was not highlighted by scientists or healthcare professionals. There was strong emphasis on quality of life-related issues such as side effects of treatment. There was some agreement between the priorities deduced by our study and those of the professionals in the areas of screening, prevention and breast reconstruction.ConclusionOur study identified some research themes that were not identified by scientists and healthcare professionals in two earlier landmark studies. This highlights the importance of including patients and public representatives when setting research priorities. The results should be used to guide investigators when planning future studies and for funding bodies in allocating resources for future projects.

Project description:BACKGROUND:Sexual dysfunction is common in midlife women and can have a significant negative impact on quality of life. Although treatments exist, there is little research on which sexual function outcomes and treatments midlife women prefer. AIM:To better understand the sexual function outcomes that were most important to sexually active women 45 to 60 years old and the types of treatments they would prefer from individual interviews and focus groups. METHODS:Twenty individual interviews and three focus groups (N = 39) were led by a trained facilitator, audio recorded, and transcribed. Two investigators developed a codebook, and the primary investigator coded all data. A second investigator coded five randomly selected interviews to ensure intercoder reliability. Codes relating to outcomes and treatment preferences were examined to identify central themes. RESULTS:The mean age was 52.8 years (range = 45-59). When asked what they would want a sexual dysfunction treatment to do, women sought solutions to specific sexual problems: low desire, vaginal pain and dryness, and decreased arousal or ability to achieve orgasm. However, when asked about the most important aspect of their sex life, most women indicated emotional outcomes, such as enhanced intimacy with their partner, were most important to them. Most women preferred behavioral over pharmaceutical treatments, citing concerns about side effects. These women felt that behavioral treatments might be better equipped to address physical and psychological aspects of sexual problems. CLINICAL IMPLICATIONS:This study highlights the importance of considering not only physical but also emotional outcomes when evaluating and treating sexual dysfunction in midlife women. It also emphasizes the importance of developing behavioral treatments in addition to pharmaceutical treatments. STRENGTHS AND LIMITATIONS:By using a qualitative approach, this study allowed women the time and space to speak their own words about their experiences with sexuality at midlife. In addition, different racial and ethnic groups and menopausal statuses were represented. Limitations include limited generalizability, as is true for most qualitative research. In addition, although most women did endorse sexual problems, we did not exclude women with no sexual complaints. CONCLUSIONS:Midlife women value physical and emotional outcomes with regard to sexual function. Many midlife women in this sample expressed a preference for behavioral approaches over pharmaceutical approaches for the treatment of sexual dysfunction. Thomas HN, Hamm M, Hess R, et al. Patient-Centered Outcomes and Treatment Preferences Regarding Sexual Problems: A Qualitative Study Among Midlife Women. J Sex Med 2017;14:1011-1017.

Dataset Information

Insecurities of women regarding breast cancer research: a qualitative study.

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Insecurities of women regarding breast cancer research: a qualitative study.

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