American Indian and Alaska Native children face a “disproportionate burden of injury, preterm birth, and other risk factors” that can cause disability. They also face systemic disadvantages and inequities, which leave them more vulnerable. Little is known about their experiences with their disability and how it affects their participation in cultural activities, including nature-based activities such as fishing and berry-picking, which can influence their health and wellbeing.
This study explores the perspectives of 17 individuals including 4 children or youth with functional differences, and 8 mothers and 5 fathers discussing the experiences of 11 children or youth with functional differences. Semi-structured interviews explored the children's daily routines, participation in tribal cultural activities, including core activities on the land and water, and their interaction with health care systems. The children represented multiple tribal groups, and most lived on or near tribal lands. Their health conditions that led to the disability included cerebral palsy, spinal cord dysfunction, and other conditions such as stroke, autism, or neuromuscular diseases. Instead of using the language of 'disability' which some families did not use, the authors used 'functional difference.'
All children participated, to some extent, in cultural activities such as an annual canoe journey or powwows. Family members helped enable children's participation in these activities, and some children highlighted that their health and happiness stemmed from being together with their families. Many children experienced barriers to participation, including: lack of resources such as wheelchair accessible transportation, physical environmental barriers such as rough terrain to go berry picking or to the beach, as well as navigating crowds and lack of information about appropriate accommodations. In addition, health care and rehabilitation providers did not address the children's cultural needs and some participants did not perceive conversations about cultural activities to be part of rehabilitation.
The study highlights the importance of American Indian and Alaska Native cultural considerations for health and disability. It also points to the numerous barriers that children with disability face when trying to participate in cultural activities. There are also important implications for rehabilitation healthcare providers, especially to consider cultural activities as essential to the health and wellbeing of children with disability. Collaborating with children and their families and engaging in shared decision making that considers both indigenous and Western perspectives is essential to meeting the needs of children with disabilities.
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