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"Treat us with dignity": a qualitative study of the experiences and recommendations of lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients with cancer.

ABSTRACT: PURPOSE:Despite indications that lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients have unique needs when seeking healthcare, the experiences of LGBTQ patients in the context of cancer care have not been fully explored. This qualitative study investigated recommendations offered by LGBTQ patients with cancer for improving cancer care. METHODS:Two hundred seventy-three LGBTQ people across the USA who had been diagnosed with cancer completed an online survey that included open-ended questions. Using responses to these questions, two researchers independently conducted open coding. A code book was generated collaboratively and the data were coded independently. Codes were clustered and refined and the data were independently re-coded. RESULTS:Five themes emerged. LGBTQ patients with cancer: (1) are affected by providers' LGBTQ-specific knowledge and skills, assumptions, and mistreatment; (2) negotiate disclosure of identities based on safety of clinical encounters; (3) have differing experiences based on multiple intersecting identities; (4) receive more effective care when members of their support networks are included; and (5) are self-advocates and undergo transformative experiences in the face of morbidity and marginalization. CONCLUSIONS:LGBTQ cancer survivors report challenges accessing competent cancer treatment. To address this, cancer care providers should provide safe clinical encounters, inquire about and respond professionally to patients' identities and identifiers, include chosen support people, provide care relevant to patients' gender identities, and address treatments' effects on sexuality. Training providers about diverse LGBTQ communities and acknowledging the strengths of LGBTQ patients with cancer may improve provider/patient relationships. Provider training could be created based on these principles.

SUBMITTER: Kamen CS

PROVIDER: S-EPMC6506401 | biostudies-literature | 2019 Jul

REPOSITORIES: biostudies-literature

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"Treat us with dignity": a qualitative study of the experiences and recommendations of lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients with cancer.

Kamen Charles S CS Alpert Alison A Margolies Liz L Griggs Jennifer J JJ Darbes Lynae L Smith-Stoner Marilyn M Lytle Megan M Poteat Tonia T Scout Nfn N Norton Sally A SA

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 20181108 7

<h4>Purpose</h4>Despite indications that lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients have unique needs when seeking healthcare, the experiences of LGBTQ patients in the context of cancer care have not been fully explored. This qualitative study investigated recommendations offered by LGBTQ patients with cancer for improving cancer care.<h4>Methods</h4>Two hundred seventy-three LGBTQ people across the USA who had been diagnosed with cancer completed an online survey that inclu ...[more]

PMID: 30411237

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Project description:BackgroundLesbian, gay, bisexual, transgender, and queer (LGBTQ) populations face multiple health disparities including barriers to healthcare. Few studies have examined healthcare trainees' perceptions of their preparedness to care for LGBTQ populations and none have compared perceptions of training across medicine, dental medicine, and nursing. We aimed to understand variations across disciplines in LGBTQ health by assessing medical, dental, and nursing students' perceptions of preparedness across three domains: comfort levels, attitudes, and formal training.MethodsWe developed a 12-item survey with an interprofessional panel of LGBTQ students from the schools of medicine, dental medicine, and nursing at a top-tier private university in the United States. Any student enrolled full time in any of the three schools were eligible to respond. We performed descriptive statistical analyses and examined patterns in responses using Kruskal-Wallis tests and an ordered logistic regression model.Results1,010 students from the Schools of Medicine, Dental Medicine, and Nursing responded to the survey for an overall response rate of 43%. While 70-74% of all student respondents felt comfortable treating LGBTQ patients, fewer than 50% agreed that their formal training had prepared them to do so. Overall, 71-81% of students reported interest in receiving formal LGBTQ health education, though dental students were significantly less likely than medical students to report this interest (OR 0.53, p<0.01). Respondents who identified as LGBQ were significantly less likely than heterosexual students to agree that training was effective (OR 0.55, p<0.01) and that their instructors were competent in LGBTQ health (OR 0.56, p<0.01).ConclusionDespite high comfort levels and positive attitudes towards LGBTQ health, most student respondents did not report adequate formal preparation. There were some significant differences between disciplines, but significant gaps in training exist across disciplines. Health professional schools should develop formal content on LGBTQ health and utilize this content as an opportunity for interprofessional training.

Project description:Amid incremental progress in establishing an enabling legal and policy environment for lesbian, gay, bisexual, transgender and queer-identified people, and people with intersex variations (LGBTQI+) in India, evidence gaps on LGBTQI+ health are of increasing concern. To that end, we conducted a scoping review to map and synthesize the current evidence base, identify research gaps, and provide recommendations for future research. We conducted a scoping review using the Joanna Briggs Institute methodology. We systematically searched 14 databases to identify peer-reviewed journal articles published in English language between January 1, 2010 and November 20, 2021, that reported empirical qualitative, quantitative or mixed methods data on LGBTQI+ people's health in India. Out of 3,003 results in total, we identified 177 eligible articles; 62% used quantitative, 31% qualitative, and 7% mixed methods. The majority (55%) focused on gay and other men who have sex with men (MSM), 16% transgender women, and 14% both of these populations; 4% focused on lesbian and bisexual women, and 2% on transmasculine people. Overall, studies reported high prevalence of HIV and sexually transmitted infections; multilevel risk factors for HIV; high levels of mental health burden linked to stigma, discrimination, and violence victimization; and non-availability of gender-affirmative medical care in government hospitals. Few longitudinal studies and intervention studies were identified. Findings suggest that LGBTQI+ health research in India needs to move beyond the predominant focus on HIV, and gay men/MSM and transgender women, to include mental health and non-communicable diseases, and individuals across the LGBTQI+ spectrum. Future research should build on largely descriptive studies to include explanatory and intervention studies, beyond urban to rural sites, and examine healthcare and service needs among LGBTQI+ people across the life course. Increased Indian government funding for LGBTQI+ health research, including dedicated support and training for early career researchers, is crucial to building a comprehensive and sustainable evidence base to inform targeted health policies and programs moving forward.

Project description:BackgroundCancer survivors frequently experience cancer-related financial burdens. The extent to which Lesbian, Gay, Bisexual, Transgender, Queer, Plus (LGBTQ+) populations experience cancer-related cost-coping behaviors such as crowdfunding is largely unknown, owing to a lack of sexual orientation and gender identity data collection and social stigma. Web-scraping has previously been used to evaluate inequities in online crowdfunding, but these methods alone do not adequately engage populations facing inequities.ObjectiveWe describe the methodological process of integrating technology-based and community-engaged methods to explore the financial burden of cancer among LGBTQ+ individuals via online crowdfunding.MethodsTo center the LGBTQ+ community, we followed community engagement guidelines by forming a study advisory board (SAB) of LGBTQ+ cancer survivors, caregivers, and professionals who were involved in every step of the research. SAB member engagement was tracked through quarterly SAB meeting attendance and an engagement survey. We then used web-scraping methods to extract a data set of online crowdfunding campaigns. The study team followed an integrated technology-based and community-engaged process to develop and refine term dictionaries for analyses. Term dictionaries were developed and refined in order to identify crowdfunding campaigns that were cancer- and LGBTQ+-related.ResultsAdvisory board engagement was high according to metrics of meeting attendance, meeting participation, and anonymous board feedback. In collaboration with the SAB, the term dictionaries were iteratively edited and refined. The LGBTQ+ term dictionary was developed by the study team, while the cancer term dictionary was refined from an existing dictionary. The advisory board and analytic team members manually coded against the term dictionary and performed quality checks until high confidence in correct classification was achieved using pairwise agreement. Through each phase of manual coding and quality checks, the advisory board identified more misclassified campaigns than the analytic team alone. When refining the LGBTQ+ term dictionary, the analytic team identified 11.8% misclassification while the SAB identified 20.7% misclassification. Once each term dictionary was finalized, the LGBTQ+ term dictionary resulted in a 95% pairwise agreement, while the cancer term dictionary resulted in an 89.2% pairwise agreement.ConclusionsThe classification tools developed by integrating community-engaged and technology-based methods were more accurate because of the equity-based approach of centering LGBTQ+ voices and their lived experiences. This exemplar suggests integrating community-engaged and technology-based methods to study inequities is highly feasible and has applications beyond LGBTQ+ financial burden research.

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Dataset Information

"Treat us with dignity": a qualitative study of the experiences and recommendations of lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients with cancer.

Publications

"Treat us with dignity": a qualitative study of the experiences and recommendations of lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients with cancer.

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