ABSTRACT

Similar to the nation’s majority and racial/ethnic minority populations, Native Hawaiian families provide the bulk of care to loved ones with dementia. Limited research has focused on youth caregivers, who are largely invisible to the eldercare service system. This knowledge gap is especially critical for Native Hawaiians who place a high value on eldercare, often provided in multigenerational homes. To address this gap, we describe the process by which a university-community center developed a culturally responsive storybook on dementia targeted to Native Hawaiian youth. The development process honored community-based participatory research principles grounded in the cultural values and practices of Native Hawaiians, active collaboration of an advisory council, and face-to-face engagement with Native Hawaiian youth. Future directions are shared about culture-based programming and evaluation in dementia care that may be useful in work with other racial/ethnic youth and families.

摘要

与该国的多数族裔和种族/少数民族人口类似，夏威夷原住民家庭为患有痴呆症的亲人提供大部分护理。有限的研究集中在青年照顾者身上，他们在老年护理服务系统中基本上是不可见的。这种知识差距对于高度重视老年护理的夏威夷原住民来说尤其重要，通常在多代家庭中提供。为了解决这一差距，我们描述了一个大学社区中心开发针对夏威夷原住民青年的具有文化敏感性的痴呆症故事书的过程。开发过程尊重基于社区的参与式研究原则，这些原则基于夏威夷原住民的文化价值观和实践、咨询委员会的积极合作以及与夏威夷原住民青年的面对面接触。