This study has two goals. The first goal is to better understand the experience of persons living with dementia and their family caregivers as they go engage in advance care planning. We want to know their thoughts about what advance care planning is, what barriers they face in the process, and what motivates them to engage in the process of advance care planning. The second goal of the study is to pilot test a conversation tool designed to help persons living with dementia and their family clarify their values and goals for their care for right now, and in the future.
Advance care planning is usually thought of as the sole responsibility of a physician. However, many other professions have statements and guidance on the process of advance care planning and how to coach others through the process. This study’s purpose is to identify common themes across professions about the necessary knowledge, skills, and attitudes a professional needs to successfully provide advance care planning. With this research, we hope to lay the groundwork for an interprofessional model of advance care planning to be used with patients.
Professional board-certified chaplains are master’s degree-prepared, spiritual-care specialists with supervised clinical training in chaplaincy, and they serve patients, family and friend caregivers, and other health care professionals. Chaplains have training and skills and play key roles in facilitating ACP conversations with culturally diverse patients and families. However, we have very little empirical data available documenting the roles, responsibilities and competency of chaplains in ACP in the U.S. This study aims to describe ACP practices among board-certified healthcare chaplains and identify a set of domains of chaplain competencies for ACP in order to inform policy and practice discussions on the role and standards for high quality ACP facilitated by chaplains.
In today’s age of technology, social media has become an increasingly popular platform for users of many age groups. As social media continues to grow in popularity, so too, does the variety of topics and categories that are discussed in these platforms. Platforms, such as Twitter, Facebook, Instagram, and Reddit, have been increasingly used as a means to converse about healthcare information for many niche groups. This study focuses on one such niche group of users – persons with dementia and their family caregivers – and aims to describe how these users interact with one another. Specifically, the study will identify the different types of healthcare information that are discussed, what types of support they seek, and priorities made by persons with dementia and their family caregivers as they are considering treatments and services related to care of the persons with dementia.