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PURPOSE: The purpose of this study was to explore healthcare experiences of Black and White sexual and gender minority (SGM) cancer survivors across the cancer care continuum. METHODS: This was a qualitative analysis of two focus groups and eight individual interviews completed as part of a larger initiative using a community-engaged research approach to reduce cancer disparities in marginalized communities. There was a total of 16 participants in the study (9 were White, 7 were Black) and data were collected between 2019 and 2020. RESULTS: Three main themes emerged from the thematic analysis: strategically coming out, provider preferences, and health system challenges. Participants noted that they often came out through their support system, decided to come out based on the relevance of their SGM identity that they perceived, and expressed a desire for privacy. Lack of an accessible and competent PCP was tied to delayed cancer diagnosis and many participants voiced a preference for consistency when they found a provider they liked. CONCLUSIONS: Providers across specialties can address barriers for SGM patients by not making assumptions about patient sexual orientation or gender identity. Institutions should systematically collect sexual orientation and gender identity information. Primary care providers should be aware that due to resistance to switching from trusted providers, they may need to take greater initiative to facilitate cancer screenings for their patients when appropriate or take special care when making referrals to ensure they are using SGM-affirming providers. IMPLICATIONS FOR CANCER SURVIVORS: SGM cancer survivors often benefit from a cultivating relationship with a trusted PCP or other provider.
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INTRODUCTION: Delaying an elective operation to mitigate risk factors improves patient outcomes. Elective ventral hernia repair is one such example. To address this issue, we developed a pre-operative optimization clinic to support high-risk patients seeking elective ventral hernia repair. Unfortunately, few patients progressed to surgery. Within this context, we sought to understand the barriers to behavior change among these patients with the goal of improving care for patients undergoing elective surgery. METHODS: We performed semi-structured, qualitative interviews with 20 patients who were declined ventral hernia repair due to either active tobacco use or obesity. Patients were recruited from a pre-operative optimization clinic at an academic hospital. Interviews sought to characterize patients' perceived barriers to behavior change. Interviews were concluded once thematic saturation was reached. We used an inductive thematic analysis to analyze the data. All data analysis was performed using MAXQDA software. RESULTS: Among 20 patients (mean age 50, 65% female, 65% White), none had yet undergone ventral hernia repair. While most patients had a positive experience in the clinic, among those who did not, we found three dominant themes around behavior change: (1) Patient's role in behavior change: how the patient perceived their role in making behavior changes optimize their health for surgery; (2) Obtainability of offered resources: the need for more support for patients to access the recommended healthcare; and (3) Patient-provider concordance: the extent to which patients and providers agree on the relative importance of different attributes of their care. CONCLUSION: Behavior change prior to elective surgery is complex and multifaceted. While improving access to tobacco cessation resources and obesity management may improve outcomes for some, patients may benefit from increased on-site facilitation to promote access to resources as well as the use of patient-facing decision support tools to promote patient-provider concordance.
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Hérnia Ventral , Herniorrafia , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Herniorrafia/efeitos adversos , Fatores de Risco , Hérnia Ventral/cirurgia , Hérnia Ventral/etiologia , Obesidade/cirurgia , Obesidade/etiologia , Procedimentos Cirúrgicos EletivosRESUMO
Background: Lesbian, gay, bisexual, transgender, and other LGBTQIA cancer patients experience significant disparities in cancer-related outcomes. Their relationships may not be acknowledged in care systems designed to serve primarily heterosexual and cisgender (H/C) patients, and resources for partners and caregivers of H/C patients may not address the needs of LGBTQIA caregivers. Tailored interventions are needed to address disparities in LGBTQIA patients and caregivers. Methods: To address this gap, researchers from Karmanos Cancer Institute in Detroit, MI and Wilmot Cancer Institute in Rochester, NY worked with a cancer action council (CAC) of LGBTQIA stakeholders with lived experience of cancer in a community-academic partnership. This group used the ADAPT-ITT model to guide their process of assessing needs in this community, identifying evidence-based interventions that could be adapted to meet those needs, and beginning the process of adapting an existing intervention to meet the needs of a new population. Results: In the Assessment phase of the model, CAC members shared their own experiences and concerns related to cancer and identified cancer caregiving as a priority area for intervention. In the Decision-Making phase of the model, researchers and CAC members performed a review of the literature on interventions that reported outcomes for cancer caregiver, identifying 13 promising interventions. Each of these interventions was evaluated over a series of meetings using a scoring rubric. Based on this rubric, the FOCUS intervention was established as an appropriate target for adaptation to the LGBTQIA population. In the first stage of the Adaptation phase, CAC members reacted to the intervention content and identified principal components for adaptation. Conclusion: While the FOCUS intervention adaptation is still in process, this manuscript can serve as a guide for others establishing community-academic partnerships to adapt interventions, as well as those developing interventions and resources for LGBTQIA persons coping with cancer.