Culture, Health, Function, and Participation Among American Indian and Alaska Native Children and Youth With Disabilities: An Exploratory Qualitative Analysis

Arch Phys Med Rehabil. 2019 Sep;100(9):1688-1694. doi: 10.1016/j.apmr.2018.11.016. Epub 2018 Dec 19.

Abstract

Objective: To investigate the influence of traditional culture on health, disability, and health care services among American Indian and Alaska Native (AI/AN) children and youth with disabilities.

Design: Exploratory descriptive qualitative analysis.

Setting: Tertiary children's hospital.

Participants: A purposively sampled group (N=17) of AI/AN youth (n=4) with disability lasting at least 6 months age 8-24 years old and parents (n=13) of AI/AN children with disability lasting at least 6 months age 6 months to 17 years old.

Interventions: Not applicable.

Main outcome measures: Participant responses to semistructured interview questions regarding health beliefs, daily activities, participation in cultural activities, and experiences receiving or having their child receive health care and rehabilitation services.

Results: Three themes were identified: (1) participation in cultural activities is important for health as an AI/AN person; (2) experiences participating in cultural activities with functional differences; and (3) lack of recognition of the culturally related functional needs of AI/AN children with disabilities by rehabilitation providers. Children participated in cultural activities primarily through attendance at community-wide events. Barriers to participation in cultural activities included environmental barriers and adaptive mobility devices ill-suited to rough terrain. Participants perceived addressing functional needs related to culture, and cultural activities was not an expected part of rehabilitation services.

Conclusions: AI/AN children with disabilities experience barriers to participation in cultural activities, making it hard for them to achieve their definition of ideal health. Rehabilitation services have not identified or addressed these unmet culturally related functional needs.

Keywords: Alaska Native; Disabled children; Indians, North American; Rehabilitation; Social participation.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adolescent
  • Adult
  • Alaskan Natives* / psychology
  • Child
  • Child, Preschool
  • Culturally Competent Care*
  • Disabled Persons / psychology
  • Disabled Persons / rehabilitation*
  • Environment
  • Female
  • Health Knowledge, Attitudes, Practice / ethnology*
  • Humans
  • Indians, North American* / psychology
  • Infant
  • Interviews as Topic
  • Male
  • Middle Aged
  • Parents
  • Qualitative Research
  • Self-Help Devices
  • Social Participation*
  • Young Adult