American Indians and Alaska Natives (AI/AN) report disability at higher levels than the general population. Social connection through participation in traditional cultural activities is an important part of AI/AN health and wellness. In a preliminary study, AI/AN children and youth with disabilities experienced barriers to participation in traditional cultural activities related to their functional impairments. The children and youth did not have their cultural needs discussed during their rehabilitation sessions, despite participation in desired activities being a goal of rehabilitation programs and several of the barriers having potential solutions through rehabilitation interventions. Without culturally-centered rehabilitation services, AI/AN children with disabilities will not receive the full potential benefit of rehabilitation services, thus reducing their ability to attain optimal functional and wellness outcomes. A systematic approach to designing and testing culturally-centered rehabilitation services for AI/AN children with disabilities is necessary. The goal of this proposal is to integrate stakeholder perspectives into a novel model of culturally-centered rehabilitation and test the acceptability and feasibility of this model during rehabilitation services for AI/AN children with neurological impairments.
In Aim 1, we will develop and administer a survey to understand pediatric rehabilitation professionals? knowledge, attitudes, and behaviors when serving AI/AN children and their perceived barriers and facilitators for culturally-centered care.
In Aim 2, we will collaboratively develop a novel model of culturally-centered rehabilitation with a stakeholder advisory committee, and with input from a panel of experts in AI/AN health, AI/AN disability, and pediatric rehabilitation health services. The stakeholder advisory committee will consist of AI/AN users of neurological rehabilitation services, parents or guardians of AI/AN children using neurological rehabi litation services, AI/AN and non-AI/AN pediatric rehabilitation professionals, AI/AN elders, and AI/AN traditional healers. Finally, in Aim 3, we will test the acceptability and feasibility of the novel culturally-centered rehabilitation service model during pediatric neurological rehabilitation services, using quantitative and qualitative evaluations. This research plan is part of a K23 proposal designed to provide scholarly training, mentorship, and support for Dr. Fuentes to gain skills and experience needed to be an independent investigator conducting community-based and stakeholder-engaged research to design effective, culturally-appropriate interventions to improve the health and functional outcomes of AI/AN children with disabilities. To achieve this objective, she will pursue training in: (1) community-based participatory research and stakeholder-engaged research; (2) survey research methods; (3) modified Delphi processes; and (4) the design, implementation, and evaluation of a rehabilitation service model.
American Indian and Alaska Native (AI/AN) people report high levels of disability, with functional impairments affecting an AI/AN person?s ability to participate in the traditional cultural activities important for social connection and wellness as an Indigenous person. Rehabilitation services do not consistently address AI/AN children?s culturally-related functional needs. The purpose of this research proposal is to design a model of culturally-centered rehabilitation services that can better meet the cultural and functional needs of AI/AN children with disabilities.