A culturally adapted decision aid intervention to support Chinese American dementia caregivers in feeding-related decisions

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PROJECT SUMMARY Family caregivers of people with dementia have to decide between tube feeding and hand feeding when persistent eating problems arise. This decision can be difficult for Chinese-American dementia caregivers, due to the interplay of culture, potential absence of a patient’s advance directive, poor understanding of dementia, and lack of knowledge on the risks and benefits of tube feeding. There is a high prevalence of tube feeding among Chinese older adults with advanced dementia; however, tube feeding does not have health benefits for older adults with advanced dementia, and may in fact be related to increased risk and discomfort. Shared decision-making is a process by which patients, family members, and healthcare providers work together to create care plans that balance clinical evidence and patient preferences and values with risks and expected outcomes. Current clinical discussions on feeding tubes rarely meet this standard. Limited research has been conducted to improve decision quality regarding feeding options among Chinese-American dementia caregivers. This pathway to Independence Award (K99/R00) will give Dr. Pei the training, mentoring, and skills necessary to conduct intervention research to improve decision-making about feeding options for dementia patients in Chinese American communities. The goal of this study is to develop and pilot test a culturally adapted decision aid intervention to support Chinese American dementia caregivers in decision making about feeding options. To become an independent investigator in improving end-of-life decision making, Dr. Pei will receive training and mentoring in four areas: (1) deepening the knowledge of end-of-life decision-making, (2) gaining additional training in qualitative methods research, (3) developing proficiency in clinical trial design and (4) enhancing professional developmental skills in grant writing, research team management, and leadership. In the K99 phase, the candidate proposes two aims. Aim 1: Conduct individual interviews with family caregivers and healthcare professionals to inform the adaptation of an existing intervention; Aim 2: Develop, refine, and acceptability test the culturally adapted decision aid. In the R00 phase, the candidate aims to refine and evaluate the efficacy of the decision aid in a pilot randomized controlled trial among 60 Chinese American dementia caregivers (Aim 3). By the end of the R00 award, Dr. Pei will complete the transition from observational and explanatory research to behavioral intervention work and submit an R01 proposal. Her strong mentoring team, well-established collaboration with community organizations in New York City, and ideal environment of research support and resources at New York University will help Dr. Pei become a successful independent investigator in improving end-of-life decision making for older adults with dementia.