Dataset Information

Cancer genetic counseling communication with low-income Chinese immigrants.

ABSTRACT: As genetics and genomics become part of mainstream medicine, these advances have the potential to either reduce or exacerbate health disparities. Relatively, little research has explored the quality of genetic counseling communication experienced by limited English proficiency patients, especially Chinese Americans. We observed and audio recorded genetic counseling appointments (n =?40) of low-income, limited English-proficient Chinese patients (n =?25) and conducted post-visit interviews (n =?17) using stimulated recall to examine patient understanding of the communication. Standard techniques based in grounded theory, including iterative data review and multiple coders, were used to analyze observation fieldnotes and interview transcripts and to identify these themes: (1) strong beliefs in environmental causes of cancer and skepticism about genetic causes, (2) willingness to undergo genetic testing despite skepticism of hereditary cause of cancer, (3) misunderstanding of key information needed to make informed decisions about testing and screening/prevention options, (4) variable quality of medical interpretation, and (5) selective family communication about cancer and genetic counseling and testing. Together, these themes describe substantial gaps in communication and identify the need for genetic counseling techniques and skills that enable counselors to communicate more effectively across language, literacy, and culture. Understanding the mechanisms of inheritance and the implications of genetic test results can be challenging for anyone, and it is exceptionally daunting for those who have limited English proficiency and/or low literacy. For Chinese immigrant patients to reap the full benefits of genetic counseling and testing, effective communication is essential. Research on interventions to improve communication is needed to ensure that disparities do not widen as genomic medicine reaches a more diverse population.

SUBMITTER: Cheng JKY

PROVIDER: S-EPMC6002298 | biostudies-literature | 2018 Jul

REPOSITORIES: biostudies-literature

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Cancer genetic counseling communication with low-income Chinese immigrants.

Cheng Janice Ka Yan JKY Guerra Claudia C Pasick Rena J RJ Schillinger Dean D Luce Judith J Joseph Galen G

Journal of community genetics 20171201 3

As genetics and genomics become part of mainstream medicine, these advances have the potential to either reduce or exacerbate health disparities. Relatively, little research has explored the quality of genetic counseling communication experienced by limited English proficiency patients, especially Chinese Americans. We observed and audio recorded genetic counseling appointments (n = 40) of low-income, limited English-proficient Chinese patients (n = 25) and conducted post-visit interviews (n = 1 ...[more]

PMID: 29197036

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Project description:Importance:Federal policy changes in 2002 and 2009 led some states to expand public health insurance coverage to non-US-born children and pregnant women who are lawful permanent residents during their first 5 years of residency in the United States. In other states, there were concerns that insurance expansion could attract immigrants to relocate to gain free health insurance coverage. Objective:To examine whether expansion of public health insurance to non-US-born, lawful permanent resident children and pregnant women during their first 5 years of residency is associated with increased interstate migration among these groups. Design, Setting, and Participants:This difference-in-differences analysis included data on 208?060 immigrants from the American Community Survey from 2000 through 2016, with analysis including all 50 states and the District of Columbia. The study sample included 2 treatment groups that became eligible under the expanded coverage: lawful permanent resident adults with at least 1 non-US-born child younger than 18 years (n?=?36?438) and lawful permanent resident women of reproductive age (n?=?87?418). Control groups that remained ineligible under the expanded coverage included lawful permanent resident adults without non-US-born children (n?=?171?622), lawful permanent resident single men (n?=?56?142), and lawful permanent resident postreproductive women (n?=?15?129). A difference-in-differences design compared migration rates between eligible and ineligible immigrant groups before and after insurance coverage expansions. Data analysis was performed from November 3, 2018, to May 31, 2019. Exposures:Public health insurance coverage for immigrant women and children who were lawful permanent residents within 5 years of residency. Main Outcomes and Measures:Migration to a health expansion state from any other state and from a neighboring state. Results:Of 208?060 immigrants (47% women in the weighted sample; mean [SD] age, 32.97 [12.94] years; 63% Hispanic), the mean (SD) annual move rate across the entire sample was 3% (17%). Expansion of public health insurance to non-US-born children or pregnant women within their first 5 years of residency was not associated with interstate movement for health care benefits. Coverage expansion for non-US-born children of lawful permanent residents was not associated with a change in the rate of in-migration higher than 1.78 percentage points or lower than -1.28 percentage points. The corresponding estimate for coverage expansion of lawful permanent resident pregnant women was a change higher than 1.38 percentage points and lower than -1.20 percentage points. Conclusions and Relevance:The results suggest that states considering expanding health care benefits coverage to recently arrived immigrant children and pregnant women may be unlikely to experience in-migration of these persons from other states, which has important implications for understanding short- and long-term program costs.

Project description:BackgroundType 2 diabetes (T2D) in Chinese Americans is a rising public health concern for the US health care system. The majority of Chinese Americans with T2D are foreign-born older immigrants and report limited English proficiency and health literacy. Multiple social determinants of health limit access to evidence-based diabetes interventions for underserved Chinese immigrants. A social media-based diabetes intervention may be feasible to reach this community.ObjectiveThe purpose of the Chinese American Research and Education (CARE) study was to examine the potential efficacy of a social media-based intervention on glycemic control in Chinese Americans with T2D. Additionally, the study aimed to explore the potential effects of the intervention on psychosocial and behavioral factors involved in successful T2D management. In this report, we describe the design and protocol of the CARE trial.MethodsCARE was a pilot randomized controlled trial (RCT; n=60) of a 3-month intervention. Participants were randomized to one of two arms (n=30 each): wait-list control or CARE intervention. Each week, CARE intervention participants received two culturally and linguistically tailored diabetes self-management videos for a total of 12 weeks. Video links were delivered to participants via WeChat, a free and popular social media app among Chinese immigrants. In addition, CARE intervention participants received biweekly phone calls from the study's community health workers to set goals related to T2D self-management and work on addressing goal-achievement barriers. Hemoglobin A1c (HbA1c), self-efficacy, diabetes self-management behaviors, dietary intake, and physical activity were measured at baseline, 3 months, and 6 months. Piecewise linear mixed-effects modeling will be performed to examine intergroup differences in HbA1c and psychosocial and behavioral outcomes.ResultsThis pilot RCT study was approved by the Institutional Review Board at NYU Grossman School of Medicine in March 2021. The first participant was enrolled in March 2021, and the recruitment goal (n=60) was met in March 2022. All data collection is expected to conclude by November 2022, with data analysis and study results ready for reporting by December 2023. Findings from this pilot RCT will further guide the team in planning a future large-scale study.ConclusionsThis study will serve as an important first step in exploring scalable interventions to increase access to evidence-based diabetes interventions among underserved, low-income, immigrant populations. This has significant implications for chronic care in other high-risk immigrant groups, such as low-income Hispanic immigrants, who also bear a high T2D burden, face similar barriers to accessing diabetes programs, and report frequent social media use (eg, WhatsApp).Trial registrationClinicalTrials.gov NCT03557697; https://clinicaltrials.gov/ct2/show/NCT03557697.International registered report identifier (irrid)DERR1-10.2196/42554.

Project description:PurposeTo examine how psychosocial variables predicted use of an online health consultation service among low-income breast cancer patients and in turn how using this service affected these same psychosocial outcomes.MethodThis retrospective study included 231 recently diagnosed, low-income (at or below 250% of the federal poverty level) breast cancer patients provided a free computer with 16 weeks of access to the Internet-based 'Ask an Expert' service offered as part of the Comprehensive Health Enhancement Support System (CHESS) "Living with Breast Cancer" program. The use activity included a total of 502 messages submitted to the online health consultation service. The data included five psychosocial variables: information seeking, social support, health self efficacy, participation in health care, and doctor-patient relationship, were collected at both the pre-test and 16-week post-test after using the service. Correlation tests were conducted to examine the relationship between pre- and post-test, and use activity. A multiple regression model was formed for each of five psychosocial variables to examine how use activity of the consultation service was associated with various psychosocial measurements.ResultsIn total, 865 distinct consulting queries from 502 messages were identified as measurement of patients' use activities (3.74 consulting queries per participant). Use activity had significant negative relationships with pre-test scores across all five psychosocial variables. The regression models found significant positive main effects (use activity) associated with three of these psychosocial variables: health self efficacy, participation in health care and doctor-patient relationship. Use activity of the online consultation service did not have significant relationships with the dependent variables of information seeking and perceived social support.ConclusionLow-income breast cancer patients sought out information from an online cancer information expert. Patients with more negative perceptions at pre-test tended to use the service more. Greater use of the service was associated with improvement in patients' perception of health self-efficacy, participation in health care and doctor-patient relationship. Moreover, use of online health consultation appears to level the differences, narrowing the gaps between those who were worse and better off at pre-test. These findings suggest that online health consultation can serve as an effective complement to other resources, which help low-income, breast cancer patients feel more confident to participate more actively in their health care, become more actively involved in making decisions about their treatments and enhance the relationship with their doctors.

Dataset Information

Cancer genetic counseling communication with low-income Chinese immigrants.

Publications

Cancer genetic counseling communication with low-income Chinese immigrants.

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