Developing and pilot testing culturally based educational videos for Puerto Rican and African American home hospice caregivers

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PROJECT SUMMARY Overview: The proposal aims to develop and pilot test culturally based educational videos for Puerto Rican and African American home hospice caregivers (CGs). Background: Formal information and education around symptom of forefront related issues is lacking for many family CGs home hospice patients. However, discussions around understanding and managing symptoms is often at the of the minds of hospice providers and CGs.In one study of hospice CGs, 48 out of 52 CGs (92%) expressed concerns about patient care issues (e.g., patient pain, symptoms). In another study analyzing audio recordings of home hospice visits, the average number of medications discussed was 4, and 67% of interactions with CGs focused on symptom knowledge skills. Through interviews with home hospice CGs, Dr. Phongtankuel has identified gapsin knowledge on caring for dying patients. In addition, Dr. Phongtankuel has found that lack of CG knowledge and/or support often leads to unwanted patient outcomes, including patient hospitalization. Despite the focus hospices place on managing symptoms to maintain patient comfort, CG still have concerns and lack of knowledge around symptom related issues. Therefore, additional interventions are needed to address this problem. Research plan: The aims of the proposal are, (1) to gather input, through interviews and focus groups, from Puerto Rican and African American family CGs to understand culturally based views and knowledge gaps around symptom related issues in home hospice care, (2) to develop 12 video scripts, using experience based codesign, with input from stakeholder groups (scripts will be used to produce educational videos on symptom related issues for Puerto Rican and African American CGs) and (3) To pilot CG educational videos with Puerto Rican (n=10) and African American (n=10) family CGs receiving home hospice care. Environment: The study team is a preeminent group with expertise in hospice and palliative care, social work and video production. By combining the resources and expertise from multiple groups, the proposal has the potential to lead to advances in improving CG knowledge and education around symptom related issues at the end of life and support the care CGs provide to the care recipient.