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1.
J Genet Couns ; 30(3): 730-741, 2021 06.
Article in English | MEDLINE | ID: mdl-33222313

ABSTRACT

This paper presents a process evaluation of a culturally targeted narrative video about hereditary breast and ovarian cancer (HBOC) for Latina women at risk for HBOC. Spanish-speaking Latina women at risk for HBOC participated in a single arm study (n = 40). Participants watched the video developed by the authors and responded to surveys. We used mixed methods to assess theoretical constructs that are hypothesized mediators of narrative interventions (i.e., transportation or engagement, identification with characters, emotions) and implementation outcomes (e.g., acceptability). Descriptive statistics summarized theoretical constructs and implementation outcomes. We conducted Mann-Whitney U tests to assess the differences in theoretical and implementation outcomes between participants who were affected versus. unaffected and participants with different levels of education and health literacy. We used the consensual qualitative research framework to analyze qualitative data. Participants' mean age was 47.1 years (SD = 9.48). Most participants were high school graduates or less (62.5%). Acceptability of the video was extremely high (Md = 10.0, IQR = 0.2, scale 1-10). Most (82.5%) suggested video dissemination be through social media. Participants were highly engaged (Md = 5.7, IQR = 1.5, scale 1-7), strongly identified with the main character (Md = 8.7, IQR = 2.6, scale 1-10), and reported experiencing mostly positive emotions (Md = 9.5, IQR = 2.8, scale 1-10). Participants with low health literacy and affected participants reported a significantly higher identification with the main character (p<.05). Qualitative data reinforced the quantitative findings. Women reported gaining knowledge, correcting misconceptions, and feeling empowered. Our culturally targeted video is highly acceptable and targets mechanisms of behavior change for narrative interventions. The video is easily disseminable and can be used as an education tool for patients including affected and unaffected women and patients with different education and health literacy levels. Future studies should test the impact of the video in enhancing genetic counseling and testing uptake.


Subject(s)
Breast Neoplasms , Ovarian Neoplasms , Breast Neoplasms/genetics , Female , Genetic Counseling , Hispanic or Latino , Humans , Middle Aged , Ovarian Neoplasms/genetics , Surveys and Questionnaires
2.
J Genet Couns ; 29(4): 505-517, 2020 08.
Article in English | MEDLINE | ID: mdl-31883202

ABSTRACT

Disparities in genetic cancer risk assessment (GCRA) uptake persist between Latinas and Non-Hispanic Whites. This study utilized a mental model approach to interview 20 Latinas (10 affected, 10 unaffected) at increased risk for hereditary breast and ovarian cancer (HBOC). Participants were asked about their knowledge and perceptions of GCRA, HBOC, risk, benefits, motivators, barriers, challenges, and experiences with GCRA. Using the Consensual Qualitative Analysis Framework, two authors independently coded the interviews and applied the final codes upon consensus. Additionally, interviews were coded to identify whether participants spontaneously brought up certain topics without a prompt. Findings identified multiple barriers and facilitators to GCRA uptake in this population, including patient level psychosocial/cultural factors (e.g., limited knowledge, worry about relatives' risk) and healthcare system factors (e.g., receiving no referrals). There were notable differences in awareness and knowledge between affected and unaffected women (e.g., genetic testing awareness), as well as knowledge gaps that were evident in both groups (e.g., age of diagnosis as a risk factor). To reduce disparities in GCRA uptake, interventions should address identified facilitators and barriers. Differences in knowledge and awareness between affected and unaffected women support the development of targeted interventions that address specific knowledge gaps. This study was registered in ClinicalTrials.gov (NCT03075540) by Alejandra Hurtado de Mendoza, Ph.D.


Subject(s)
Breast Neoplasms/genetics , Genetic Predisposition to Disease , Genetic Testing , Hispanic or Latino/psychology , Ovarian Neoplasms/genetics , Adult , Case-Control Studies , Female , Genes, BRCA1 , Genes, BRCA2 , Humans , Knowledge , Middle Aged , Motivation , Risk Assessment
3.
J Community Genet ; 11(1): 85-99, 2020 Jan.
Article in English | MEDLINE | ID: mdl-31104207

ABSTRACT

Disparities for genetic cancer risk assessment (GCRA) for hereditary breast and ovarian cancer (HBOC) persist between Latina and non-Hispanic Whites. There are few tested culturally targeted interventions. We developed a culturally targeted video to enhance GCRA uptake in at-risk Latinas. Interviews with healthcare providers (n = 20) and at-risk Latinas (n = 20) were conducted as formative research to inform the development of the video. Findings from the formative research, health behavior conceptual models, and evidence-based risk communication strategies informed the messages for the script. Then, we conducted a focus group with at-risk Latinas (n = 7) to obtain feedback for final refinement of the script. The final video was piloted for acceptability and potential dissemination in a sample of Latino community health workers (CHWs) (n = 31). Providers and at-risk Latinas suggested using simple language and visual aids to facilitate comprehension. Participants in the focus group identified areas for further clarification (e.g., cost). The result was an 18-min video that illustrates "Rosa's" story. Rosa learns about HBOC risk factors and overcomes barriers to attend genetic counseling. CHWs reported high overall satisfaction with the video (M = 9.61, SD = .88, range 1-10). A culturally targeted video has the potential to reach underserved populations with low literacy and English proficiency.

4.
Article in English | MEDLINE | ID: mdl-31795362

ABSTRACT

Latina women at risk of hereditary breast and ovarian cancer (HBOC) have lower awareness, knowledge, and use of genetic counseling and testing services (GCT) than non-Latina Whites. Few interventions have been developed to reduce these disparities among at-risk Latinas. This pilot study assessed the impact of a culturally targeted narrative video developed by our team. The study included 40 Latina immigrants living in the United States who were at risk of HBOC, including affected and unaffected women. We assessed pre-post differences in psychosocial outcomes. Participants were 47.35 years old on average (SD = 9.48). Most (70%) were unaffected with cancer, had an annual income of $40,000 or less (65%), an education of High School or less (62.5%), and were uninsured (77.5%). The video significantly enhanced knowledge (p < 0.001), positive attitudes (p < 0.05), anticipatory positive emotions (p < 0.05), and intentions to participate in counseling (p < 0.001). Importantly, the video also significantly reduced negative attitudes (p < 0.05), and attitudinal ambivalence (p < 0.001). The culturally targeted video shows preliminary evidence in improving psychosocial outcomes related to GCT uptake in Latinas at risk for HBOC. This intervention is a promising easily-disseminable strategy to address disparities in GCT utilization.


Subject(s)
Hereditary Breast and Ovarian Cancer Syndrome/psychology , Hispanic or Latino/statistics & numerical data , Information Dissemination , Adult , Female , Hereditary Breast and Ovarian Cancer Syndrome/therapy , Humans , Latin America/ethnology , Mid-Atlantic Region , Middle Aged , Pilot Projects , Southeastern United States
5.
Healthcare (Basel) ; 6(3)2018 Sep 17.
Article in English | MEDLINE | ID: mdl-30227649

ABSTRACT

The Comprehensive Cancer Network (NCCN) recommends genetic cancer risk assessment (GCRA) referral to women at high risk of hereditary breast and ovarian cancer. Latinas affected by breast cancer have the second highest prevalence of BRCA1/2 mutations after Ashkenazi Jews. Compared to non-Hispanic Whites, Latinas have lower GCRA uptake. While some studies have identified barriers for GCRA use in this population, few studies have focused on health care providers' perspectives. The purpose of the study was to examine providers' perceptions of barriers and facilitators for at-risk Latina women to participate in GCRA and their experiences providing services to this population. We conducted semi-structured interviews with 20 healthcare providers (e.g., genetic counselors, patient navigators) recruited nationally through snowballing. Interviews were transcribed. Two coders independently coded each interview and then met to reconcile the codes using Consensual Qualitative Research guidelines. Providers identified several facilitators for GCRA uptake (e.g., family, treatment/prevention decisions) and barriers (e.g., cost, referrals, awareness, stigma). Genetic counselors described important aspects to consider when working with at-risk Latina including language barriers, obtaining accurate family histories, family communication, and testing relatives who live outside the US. Findings from this study can inform future interventions to enhance uptake and quality of GCRA in at-risk Latina women to reduce disparities.

6.
J Genet Couns ; 26(1): 113-121, 2017 02.
Article in English | MEDLINE | ID: mdl-27402168

ABSTRACT

Genetic counseling and testing (GCT) for hereditary breast and ovarian cancers (HBOC) can inform treatment decisions in survivors. Black women at risk of HBOC have lower GCT engagement. There is limited data about Black survivors' experiences. The goals of this study were to: 1) examine the factors associated with HBOC knowledge and 2) assess the impact of knowledge on GCT engagement in a sample of Black survivors at risk of HBOC. Fifty Black at-risk breast/ovarian cancer survivors participated in a telephone-based survey. GCT use was measured across a continuum (awareness, referral, and use). The primary predictor variable was HBOC knowledge. Other clinical, socio-demographic, and psychosocial variables were included. Multiple linear and ordinal regression models (knowledge as the outcome and GCT as the outcome) assessed the predictors of knowledge and GCT engagement. Less than half (48 %) of survivors were referred to or used GCT services. Knowledge was moderate (M = 7.78, SD = 1.61). In the multivariable analysis, lower age (ß = -.34, p = .01) and lower stage (ß = -.318, p = .017) were associated with higher knowledge. Higher knowledge (ß = .567, p = .006) and higher self-efficacy (ß = .406, p = .001) were significantly associated with GCT engagement. Future interventions directed at increasing knowledge, self-efficacy, and improving the referral process are warranted.


Subject(s)
Genetic Counseling , Genetic Testing , Health Knowledge, Attitudes, Practice , Hereditary Breast and Ovarian Cancer Syndrome/genetics , Survivors/psychology , Adult , Black or African American/education , Black or African American/psychology , Female , Genes, BRCA1 , Genes, BRCA2 , Genetic Predisposition to Disease , Humans , Middle Aged , Mutation , Surveys and Questionnaires , United States
7.
Clin J Oncol Nurs ; 20(1): 102-4, 2016 Feb.
Article in English | MEDLINE | ID: mdl-26800415

ABSTRACT

Compassion fatigue is the emotional exhaustion and stress that nurses can feel when caring for terminally ill patients. This can contribute to high nursing turnover rates, result in poor job satisfaction, and lead to decreased ability to provide quality care. Oncology nurses are vulnerable to compassion fatigue because they develop relationships with patients battling life-threatening illnesses, provide end-of-life care, and encounter ethical dilemmas related to cancer treatment. 
.


Subject(s)
Compassion Fatigue/therapy , Hobbies , Nursing Staff/psychology , Humans , Oncology Nursing
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