9 research outputs found

    Virtual Advocacy: Lived Experience Takes Center Stage During and After Pandemic

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    COVID-19 forced a significant change for participants of the Disability Policy Seminar (DPS) typically held annually in Washington, D.C. The DPS is a policy event that both informs its participants about current policy and supports attendees visiting Capitol Hill to meet with legislators. In 2020, the DPS event, which took place during the early phase of the pandemic, was shifted from “on the Hill” to “across the screen”. Through the various lenses of an autistic self-advocate, a mother of a child with a developmental disability, and faculty of a LEND (Leadership Education in Neurodevelopmental and related Disabilities) program, this paper describes the ways in which the nature of our collaborative advocacy effort, from Hill visits to co-authorship, was shaped by changes instituted in response to COVID-19. The authors collectively explored the experience, benefit, and lasting impact of engaging in virtual advocacy from an emancipatory perspective, which highlights the voices of self-advocates and family members of people with developmental disabilities. Benefits of virtual include: 1) minimizing the physical challenges involved for persons with disabilities (particularly those with mobility issues, those who utilize durable medical equipment, and those whose disabilities make transportation challenging); 2) increasing visibility by allowing elected representatives a view into constituents’ homes; and 3) enhancing engagement for participants with different learning styles and those who communicate with support. We conclude with lessons learned within the context of a global public health emergency about how to support authentic collaboration between various stakeholders

    Cultural Humility and Cultural Brokering in Professional Training: Insights from People of Color (POC) and Persons with Disabilities (PWD)

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    This conceptual paper reflects the collaborative work of LEND trainees and faculty exploring the need to shift from “cultural competencies” to “cultural humility” in training programs. The authors draw on their lived experiences as members of racially/ethnically marginalized groups, members of the disability community, and advocates for equity in accessibility. Collectively, the authors highlight some of the challenges and opportunities in supporting diverse trainees in professional- and discipline-specific training programs. and in the provision of services the trainees provide to care-recipients across a variety of fields. This paper includes a series of case vignettes in order to: examine individual authors’ experiences working in health-related systems as a representatives from a marginalized communities as individuals who identify as people of color (POC), persons with a disability (PWD) or PWD-POC. Informed by literature in the field alongside lived experiences, this paper identifies problematic systemic, attitudinal, and cultural elements that can limit the benefit that trainees receive in training programs and offers suggestions for mediating these limiting factors to more successfully mentor trainees who are POC, PWD, or PWD-POC. Implications for training programs in addressing diversity, equity, and inclusion through the incorporation of cultural humility and cultural brokering are highlighted

    31st Annual Meeting and Associated Programs of the Society for Immunotherapy of Cancer (SITC 2016) : part two

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    Background The immunological escape of tumors represents one of the main ob- stacles to the treatment of malignancies. The blockade of PD-1 or CTLA-4 receptors represented a milestone in the history of immunotherapy. However, immune checkpoint inhibitors seem to be effective in specific cohorts of patients. It has been proposed that their efficacy relies on the presence of an immunological response. Thus, we hypothesized that disruption of the PD-L1/PD-1 axis would synergize with our oncolytic vaccine platform PeptiCRAd. Methods We used murine B16OVA in vivo tumor models and flow cytometry analysis to investigate the immunological background. Results First, we found that high-burden B16OVA tumors were refractory to combination immunotherapy. However, with a more aggressive schedule, tumors with a lower burden were more susceptible to the combination of PeptiCRAd and PD-L1 blockade. The therapy signifi- cantly increased the median survival of mice (Fig. 7). Interestingly, the reduced growth of contralaterally injected B16F10 cells sug- gested the presence of a long lasting immunological memory also against non-targeted antigens. Concerning the functional state of tumor infiltrating lymphocytes (TILs), we found that all the immune therapies would enhance the percentage of activated (PD-1pos TIM- 3neg) T lymphocytes and reduce the amount of exhausted (PD-1pos TIM-3pos) cells compared to placebo. As expected, we found that PeptiCRAd monotherapy could increase the number of antigen spe- cific CD8+ T cells compared to other treatments. However, only the combination with PD-L1 blockade could significantly increase the ra- tio between activated and exhausted pentamer positive cells (p= 0.0058), suggesting that by disrupting the PD-1/PD-L1 axis we could decrease the amount of dysfunctional antigen specific T cells. We ob- served that the anatomical location deeply influenced the state of CD4+ and CD8+ T lymphocytes. In fact, TIM-3 expression was in- creased by 2 fold on TILs compared to splenic and lymphoid T cells. In the CD8+ compartment, the expression of PD-1 on the surface seemed to be restricted to the tumor micro-environment, while CD4 + T cells had a high expression of PD-1 also in lymphoid organs. Interestingly, we found that the levels of PD-1 were significantly higher on CD8+ T cells than on CD4+ T cells into the tumor micro- environment (p < 0.0001). Conclusions In conclusion, we demonstrated that the efficacy of immune check- point inhibitors might be strongly enhanced by their combination with cancer vaccines. PeptiCRAd was able to increase the number of antigen-specific T cells and PD-L1 blockade prevented their exhaus- tion, resulting in long-lasting immunological memory and increased median survival

    Expressed emotion, perceived criticism, and depression as predictors of outcome in treatment for social anxiety disorder

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    Thesis (Ph.D.)--Boston UniversityAlthough meta-analytic studies support the efficacy of cognitive-behavioral therapy for social anxiety disorder, a proportion of patients drop out of treatment or fail to benefit. Research to date has explored patient- and treatment-specific predictors of poor treatment response, including comorbid depression, but has not evaluated variables related to the patient's social environment. Expressed emotion (EE), an index of critical, hostile, and overprotective attitudes expressed by a significant other toward an individual with a psychiatric or medical condition, has been found to predict psychiatric relapse and poor treatment outcome in a wide range of disorders. Because EE and a closely related construct, perceived criticism, have been shown to predict treatment outcome and course in anxiety and mood disorders, it was expected that EE and perceived criticism would also predict treatment outcome in social anxiety disorder. Forty patients undergoing 12-session group cognitive-behavioral therapy for social anxiety disorder completed questionnaires about their symptoms of social anxiety and depression, and levels of perceived criticism, before and after treatment. Each participant designated one significant other who was then assessed for EE using the Camberwell Family Interview, a semi-structured interview method. Results indicate that higher initial severity of social anxiety and lower levels of perceived criticism predicted treatment dropout. There was also a trend for participants with a significant other rated as high in emotional overinvolvement, one of the EE-subscales, to show less change on a composite measure of anxiety symptoms. Comorbid depression and critical EE were associated with pretreatment severity of social anxiety but not outcome. These findings add to an increasing body of literature showing that the manifestation of significant others' EE, and EE's effect on clinical outcome, can vary as a function of the identified patient's diagnosis. For socially anxious individuals, perceiving criticism in the social environment may provide an important impetus for seeking and adhering to treatment, whereas significant others' overprotective behavior may negatively impact their ability to benefit from treatment. Further research replicating these findings, clarifYing the mechanisms and developing supplemental interventions, are important future directions
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