43 research outputs found

    Development and evaluation of a staff training program on palliative care for persons with intellectual and developmental disabilities

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    Persons with intellectual and developmental disabilities (I/DD) face barriers and disparities at end of life. Among these barriers are limited educational opportunities and a paucity of targeted training materials on palliative care for staff who provide their day-to-day care. This paper reports on a three-phase project undertaken to develop, implement, and evaluate a palliative care curriculum and educational program that is responsive to the unique learning needs of staff providing services and supports for individuals with I/DD living in long-term care settings. Participants\u27 ratings of their levels of preparation and confidence to provide palliative care improved from pretraining to posttraining. Posttraining use of materials and practice changes in palliative care occurred. When training is developed in partnership with the staff who will use these training resources, it has the potential to sustain its use and to alter the care practices to address the palliative care needs of persons with I/DD

    Learning How to Ask: Reflections on Engaging American Indian Research Participants

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    Communication patterns and explanatory processes are culturally specific and not often compatible with research data gathering approaches. Given the opportunity to engage in a communication style that is comfortable, understandable, and culturally appropriate for American Indians, the researcher may find that respondents participate fully and more openly. Learning how to ask the questions and understanding the process of engaging the research participant is essential to obtaining research data among American Indian participants. This paper presents a discussion on utilizing storytelling to collect research data from American Indians and posits that engaging the respondent is just as significant a step in the process as the questions asked. Reflections on utilizing storytelling as a data collection methodology and recommendations on the process of engaging the research participant by learning how and when to ask the question are provided
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