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Project Respect: Experiences of LGBTQ+ Patients and Spouses, Partners, and Widows with Serious Illness

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Dr. Cathy Berkman, Professor at GSS and Director of the Palliative Care Fellowship, along with Dr. Gary Stein, Professor at Wurzweiler School of Social Work, Yeshiva University are launching a study to examine the experience of seriously ill LGBTQ patients and their spouses, partners, and widows.

The mixed-methods study will gather evidence that can be used to promote respectful, compassionate, and non-discriminatory hospice and palliative care for the LGBTQ community through research, policy recommendations, and advocacy. Berkman and Stein formed a multidisciplinary advisory committee for the study that includes physicians, nurses, social workers, leaders of LGBTQ and community organizations, and directors of palliative care and hospice professional organizations.

The study is funded by a grant from the Borchard Foundation. It is a follow-up to a 2018 study of 865 doctors, nurses, social workers and chaplains in palliative and hospice care that found high levels of discrimination experienced by LGBTQ patients and their spouses and partners receiving hospice and palliative care. This study, published in the Journal of Palliative Medicine, was among the first to provide strong evidence that LGBTQ patients and their spouses and partners are more likely to receive discriminatory palliative care. Disrespectful and inadequate care not only reduces the quality of palliative and hospice care to this community, it can negatively impact patient trust in their providers, and result in delaying or avoiding care and not disclosing relevant medical or personal history.

The current study builds on these findings by hearing directly from seriously ill patients and their spouses, partners, and widows about the type of disrespectful and inadequate care received by this community. Respondents will complete an online survey with questions about the ways in which the care they received was discriminatory and also ways in which the care was culturally-sensitive. The sample will be recruited from a wide range of national, regional, and local organizations and social media outlets that are in contact with all facets of the LGBTQ community. Data will be gathered from November 2021 through March 2022.

Please click here to access the Project Respect survey.

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