First data from OUT: The National Cancer Survey of LGBTQ+ survivors.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e18544-e18544
Author(s):  
Nfn Scout ◽  
Michelle ED Veras ◽  
Bethany Andrews Rhoten ◽  
Reece ED Lyerly ◽  
Aurea ED Kasberg ◽  
...  

e18544 Background: Cultural barriers that inhibit LGBTQ cancer care are a public health crisis. Although LGBTQ cultural competency trainings are rapidly becoming the norm, patient-centered information is lacking for healthcare professionals in cancer care. The purpose of OUT: The National Cancer Survey is to understand the experiences of LGBTQ cancer survivors in order to make cancer care a safer and more welcoming place for survivors and their support teams. Methods: Individuals age 18 or older currently living in the United States who have been previously diagnosed with cancer and who identify as LGBTQ+ were recruited via community partnerships and targeted paid social media advertisements with an oversample of media outreach to Black Indigenous and People of Color (BIPOC). Participants completed a cross-sectional web-based survey of their cancer care experiences. This resulted in a final sample of [1,600+] survivors, the largest known sample of LGBTQ+ cancer survivors in the world. The sample was weighted to adjust for U.S. sex assigned at birth and racial/ethnic demographics. Descriptive statistics were used to summarize participant responses, crosstabs were used to compare responses across demographic categories, and excerpted responses are used to highlight qualitative themes. Results: Participants ranged in age from X to X years (median X). X% of the sample identified as either gay or lesbian, X% as bi, and X% as trans or gender nonconforming. X% of the sample identified as White only, followed by X% as Latine, X% as Black and X% as other or mixed race. Most common cancer types included XYZ. When asked about welcoming care, X% of the sample reported they specifically sought an LGBTQ+ welcoming provider after diagnosis. Most common methods for finding such a provider included: X, X, and X. Most common cues that helped patients identify welcoming providers included X, X, and X. Overall X% reported receiving care in an LGBTQ+ welcoming environment but X% did not. Of those who did not receive care in a welcoming environment, they were more likely to be X, X, and X. Overall, X% of patients were out to their providers, but this varied by X, X, and X. The most common ways of coming out included X, X, and X. When asked what they wanted to tell health care providers to ensure better care, participants highlighted several themes, including: X, X, and X. These findings provide patient driven insights into how cancer care varies within the LGBTQ+ population by different demographic factors and specific strategies providers can take to enhance care for LGBTQ+ people.

2017 ◽  
Vol 13 (4) ◽  
pp. e291-e302 ◽  
Author(s):  
Manali I. Patel ◽  
Vyjeyanthi S. Periyakoil ◽  
Douglas W. Blayney ◽  
David Moore ◽  
Andrea Nevedal ◽  
...  

Introduction: Cancer is a leading cause of death in the United States. Although treatments have improved, patients and caregivers continue to report significant gaps in their care. The objective of this study was to examine the views of patients and caregivers on their experiences with current cancer care delivery and identify key strategies to improve the delivery of care. Methods and Materials: Semistructured interviews were conducted with 75 patients and 45 caregivers across the United States. The interviews were recorded, transcribed, and analyzed using constant comparative method of qualitative analysis. Results: Participants reported multiple gaps in care delivery, including barriers in health communication with health care providers, lack of elucidation of care goals, lack of care coordination, and challenges in accessing care. Participants identified that greater use of nonphysician providers and alternative formats, such as telephone-based care and home and community-based care, would narrow these gaps. Conclusion: Understanding patients’ and caregivers’ experiences with gaps in cancer care delivery can inform cancer care delivery redesign efforts and lead to targeted interventions that result in patient-centered and family-oriented care.


PLoS ONE ◽  
2021 ◽  
Vol 16 (11) ◽  
pp. e0248542
Author(s):  
Irene A. Doherty ◽  
William Pilkington ◽  
Laurin Brown ◽  
Victoria Billings ◽  
Undi Hoffler ◽  
...  

Background In the United States, underserved communities including Blacks and Latinx are disproportionately affected by COVID-19. This study sought to estimate the prevalence of COVID-19 vaccine hesitancy, describe attitudes related to vaccination, and identify correlates among historically marginalized populations across 9 counties in North Carolina. Methods We conducted a cross-sectional survey distributed at free COVID-19 testing events in underserved rural and urban communities from August 27 –December 15, 2020. Vaccine hesitancy was defined as the response of “no” or “don’t know/not sure” to whether the participant would get the COVID-19 vaccine as soon as it became available. Results The sample comprised 948 participants including 27.7% Whites, 59.6% Blacks, 12.7% Latinx, and 63% female. 32% earned <$20K annually, 60% owned a computer and ~80% had internet access at home. The prevalence of vaccine hesitancy was 68.9% including 62.7%, 74%, and 59.5% among Whites, Blacks, and Latinx, respectively. Between September and December, the largest decline in vaccine hesitancy occurred among Whites (27.5 percentage points), followed by Latinx (17.6) and only 12.0 points among Blacks. 51.2% of respondents reported vaccine safety concerns, 23.7% wanted others to get vaccinated first, and 63.1% would trust health care providers about the COVID-19 vaccine. Factors associated with hesitancy in multivariable logistic regression included being female (OR = 1.90 95%CI [1.36, 2.64]), being Black (OR = 1.68 1.16, 2.45]), calendar month (OR = 0.76 [0.63, 0.92]), safety concerns (OR = 4.28 [3.06, 5.97]), and government distrust (OR = 3.57 [2.26, 5.63]). Conclusions This study engaged the community to directly reach underserved minority populations at highest risk of COVID-19 that permitted assessment of vaccine hesitancy (which was much higher than national estimates), driven in part by distrust, and safety concerns.


2019 ◽  
Vol 17 (3) ◽  
pp. 133-136 ◽  
Author(s):  
Francisco Brenes

A global health crisis exists surrounding suicide. In the United States, suicide rates have increased by nearly 30% in most states since 1999. Although the suicide rate among Hispanic Americans is significantly lower than non-Hispanic Whites, reasons for the lower rate are unclear. Current literature suggests that the lower rate may be due to underreporting, a lack of suicide screening and a number of complex social issues, including the stigma surrounding suicide in Hispanic culture. Health care provider attitudes toward suicidal individuals may also negatively affect mental health outcomes. This brief report focuses on suicide as a public health concern, addresses key issues arising from the phenomenon, and provides a perspective on health care providers’ attitudes toward suicide. Recommendations for future research, as well as implications for clinical practice and policy, are suggested.


2017 ◽  
Vol 35 (3) ◽  
pp. 497-504 ◽  
Author(s):  
Manali I. Patel ◽  
Vyjeyanthi S. Periyakoil ◽  
David Moore ◽  
Andrea Nevedal ◽  
Tumaini R. Coker

Objectives: Persistent gaps in end-of-life cancer care delivery and growing associated expenditures remain imminent US public health issues. The objective of this study was to understand clinical providers’ experiences delivering cancer care for patients at the end of life and their perspectives on potential solutions to improve quality of care. Methods: Semistructured interviews were conducted with 75 cancer care providers across the United States. The interviews were recorded, transcribed, and analyzed using constant comparative method of qualitative analysis. Results: Providers identified 3 major cancer care delivery challenges including lack of time to educate patients and caregivers due to clinical volume and administrative burdens, ambiguity in determining both prognosis and timing of palliative care at the end-of-life, and lack of adequate systems to support non-face-to-face communication with patients. To address these challenges, providers endorsed several options for clinical practice redesign in their settings. These include use of a lay health worker to assist in addressing early advance care planning, proactive non-face-to-face communication with patients specifically regarding symptom management, and community and in-home delivery of cancer care services. Discussion: Specific strategies for cancer care redesign endorsed by health-care providers may be used to create interventions that can more efficiently and effectively address gaps in end-of-life cancer care.


2016 ◽  
Vol 3 (1) ◽  
pp. 24
Author(s):  
Gerald Monk ◽  
Stacey Sinclair ◽  
Michael Nelson

Despite the overwhelming evidence that suggests that patients, families and health care systems benefit from offering appropriate disclosures and apologies to patients and families following the aftermath of medical errors, few health care organizations in the U.S. invest in providing systemic training in disclosure and apology. Using a narrative analysis this paper explores the cultural barriers in the United States healthcare environment that impede health care providers from engaging in restorative conversations with patients and families when things go wrong. The paper identifies a handful of programs and models that provide disclosure and apology training and argues for the unique contributions of narrative mediation to assist health care professionals to disclose adverse events to patients and families to restore trust.


Author(s):  
Manali I. Patel ◽  
Richard Snyder ◽  
Otis Brawley

Disparities in cancer have been documented for decades and continue to persist despite clinical advancements in cancer prevention, detection, and treatment. Disparate cancer outcomes continue to affect many populations in the United States and globally, including racial and ethnic minorities, populations with low income and education, and residents of rural areas or low socioeconomic neighborhoods, among others. Addressing cancer disparities requires approaches that are multilevel. Addressing social determinants of health, such as removing obstacles to health (e.g., poverty, discrimination, access to housing and education, jobs with fair pay, and health care) can reduce cancer disparities. However, to achieve cancer health equity, multilevel approaches are required to ensure that access to high-quality cancer care and equitable receipt of evidence-based services can reduce cancer disparities. Policy, health system interventions, and innovative delivery and health care coverage approaches by private and public payers, employer-based payers, and labor union organizations can assist in ensuring access to and receipt of high-quality cancer care while addressing the high costs of care delivery. Partnerships among patients, caregivers, employers, health care providers, and health care payers can make impactful changes in the way in which cancer care is delivered and, in turn, can assist in reducing cancer disparities.


2021 ◽  
pp. 002214652110032
Author(s):  
Jamie L. Manzer ◽  
Ann V. Bell

There is a wealth of literature demonstrating the presence of bias throughout the American health care system. Despite acknowledging such presence, however, little is known about how bias functions within medical encounters, particularly how providers grapple with bias in their patient counseling and decision-making. We explore such processes through the case of contraceptive counseling, a highly raced, classed, and gendered context. In-depth interviews with 51 health care providers reveal that providers use four primary strategies to navigate and minimize bias in their care—using scientific rationale, employing “safe” biases, standardizing counseling, and implementing patient-centered care. Paradoxically, using these strategies can exacerbate rather than resolve bias. Understanding these bias management strategies reveals provider-held biases, how they manifest within appointments, and the potential consequences for patients’ health autonomy. Such knowledge informs interventions that promote contraceptive use among women in the United States, addresses bias in health care broadly, and thus ultimately helps combat health disparities.


Author(s):  
Changchuan Jiang ◽  
K Robin Yabroff ◽  
Lei Deng ◽  
Stuthi Perimbeti ◽  
Xuesong Han

Abstract Cancer, and other underlying medical conditions, including chronic obstructive pulmonary disease, heart diseases, diabetes, chronic kidney disease, and obesity, are associated with increased risk of severe COVID-19 illness. We identified 6,411 cancer survivors and 77,748 adults without a cancer history from the 2016-2018 National Health Interview Survey and examined the prevalence and sociodemographic factors associated with these conditions in the US. Most survivors reported having ≥1 of the conditions (56.4% [95% CI = 54.8% to 57.9%] vs 41.6% [95% CI = 40.9% to 42.2%] in adults without a cancer history) and nearly one-quarter (22.9%, 95% CI = 21.6% to 24.3%) reported ≥2, representing 8.7 million and 3.5 million cancer survivors, respectively. These conditions were more prevalent in survivors of kidney, liver and uterine cancers as well as Black survivors, those with low socioeconomic status, and public insurance. Findings highlight the need to protect survivors against COVID-19 transmission in health-care facilities and prioritize cancer patients, survivors, caregivers, and their health-care providers in vaccine allocation.


2021 ◽  
Author(s):  
Irene A. Doherty ◽  
William Pilkington ◽  
Laurin Brown ◽  
Victoria Billings ◽  
Undi Hoffler ◽  
...  

AbstractBackgroundIn the United States, underserved communities including Blacks and Latinx are disproportionately affected by COVID-19, and widespread vaccination is critical for curbing this pandemic. This study sought to estimate the prevalence of COVID-19 vaccine hesitancy, describe attitudes related to vaccination, and identify correlates among racial minority and marginalized populations across 9 counties in North Carolina.MethodsWe conducted a cross-sectional survey with a self-administered questionnaire distributed at free COVID-19 testing events in underserved rural and urban communities from August 27 – December 15, 2020. Vaccine hesitancy was defined as the response of “no” or “don’t know/not sure” to whether the participant would get the COVID-19 vaccine as soon as it became available.ResultsThe sample comprised 948 participants including 27.7% Whites, 59.6% Blacks, 12.7% Latinx, and 63% female. Thirty-two percent earned <$20K annually, 60% owned a computer and ∼80% had internet access at home. The prevalence of vaccine hesitancy was 68.9% including 62.7%, 74%, and 59.5% among Whites, Blacks, and Latinx, respectively. Between September and December, the largest decline in vaccine hesitancy occurred among Whites (27.5 percentage points), followed by Latinx (17.6) and the smallest decline was among Black respondents (12.0). 51.2% of the respondents reported vaccine safety concerns, 23.7% wanted others to get of the respondents reported they would trust health care providers with information about the COVID-19 vaccine. Factors associated with hesitancy in multivariable logistic regression included being female (OR=1.90 95%CI[1.36, 2.64]), being Black (OR=1.68 [1.106 2.45]), calendar month (OR=0.76 [0.63, 0.92]), safety concerns (OR=4.28 [3.06, 5.97]), and government distrust (OR=3.57 [2.26, 5.63]).ConclusionsThis study reached underserved minority populations in a number of different locations to investigate COVID-19 vaccine hesitancy. We built on existing relationships and further engaged the community, stake holders and health department to provide free COVID-19 testing. This direct approach permitted assessment of vaccine hesitancy (which was much higher than national estimates), distrust, and safety concerns.HighlightsThis study surveyed 948 adults at COVID-19 testing sites in 9 counties of North Carolina between August 27 and December 15, 2020 where vaccine hesitancy was widespread including 74% in Blacks, 62.7% in Whites and 59.5% in Latinx.Vaccine hesitancy declined over time but remained high for Blacks.On-site surveys conducted in underserved areas that were paper-based and self-administered permitted reaching adults with no internet (17%), no cell phone (20%), no computer (40%) and yearly incomes less than 20K (31%).Widespread vaccine hesitancy in predominately minority communities of NC must be addressed to successfully implement mass COVID-19 vaccination programs.


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