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

Published:December 19, 2018DOI:



      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.


      Exploratory descriptive qualitative analysis.


      Tertiary children’s hospital.


      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.


      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.


      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.


      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.


      List of abbreviations:

      AI/AN (American Indian and Alaska Native), ICF (International Classification of Functioning, Disability and Health)
      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


      Subscribe to Archives of Physical Medicine and Rehabilitation
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • Wong C.A.
        • Gachupin F.C.
        • Holman R.C.
        • et al.
        American Indian and Alaska Native infant and pediatric mortality, United States, 1999–2009.
        Am J Public Health. 2014; 104: S320-S328
        • MacDorman M.F.
        Race and ethnic disparities in fetal mortality, preterm birth, and infant mortality in the United States: an overview.
        Semin Perinatol. 2011; 35: 200-208
        • Cappiello M.M.
        • Gahagan S.
        Early child development and developmental delay in indigenous communities.
        Pediatr Clin North Am. 2009; 56: 1501-1517
        • Sarche M.
        • Spicer P.
        Poverty and health disparities for American Indian and Alaska Native children: current knowledge and future prospects.
        Ann NY Acad Sci. 2008; 1136: 126-136
        • Krahn G.L.
        • Walker D.K.
        • Correa-De-Araujo R.
        Persons with disabilities as an unrecognized health disparity population.
        Am J Public Health. 2015; 105: S198-S206
        • National Partnership for Action
        Health equity and disparities.
        (Available at:)
        • Fuentes M.M.
        • Bjornson K.
        • Christensen A.
        • Harmon R.
        • Apkon S.D.
        Disparities in functional outcomes during inpatient rehabilitation between American Indian/Alaska Native and white Children.
        J Health Care Poor Underserved. 2016; 27: 1080-1096
        • Rushing S.C.
        • Stephens D.B.A.
        Tribal recommendations for designing culturally appropriate technology-based sexual health interventions targeting native youth in the Pacific Northwest.
        Am Indian Alsk Native Ment Health Res. 2012; 19: 76-101
        • Kaufman C.E.
        • Whitesell N.R.
        • Keane E.M.
        • et al.
        Effectiveness of circle of life, an HIV-preventive intervention for American Indian middle school youths: a group randomized trial in a northern plains tribe.
        Am J Public Health. 2014; 104: e106
        • Joe J.R.
        American Indian cultural perspectives on disability.
        University of Arizona, Native American Research and Training Center, Tucson, AZ1987
        • Nichols L.A.
        • Keltner B.
        Indian family adjustment to children with disabilities.
        Am Indian Alsk Native Ment Health Res. 2005; 12: 22-48
        • Elder H.
        Indigenous theory building for Maori children and adolescents with traumatic brain injury and their extended family.
        Brain Impair. 2013; 14: 406-414
        • King J.A.
        • Brough M.
        • Knox M.
        Negotiating disability and colonisation: the lived experience of Indigenous Australians with a disability.
        Disabil Soc. 2014; 29: 738-750
        • Gergen K.J.
        • Gergen M.M.
        Social constructionism.
        in: Givens L. The SAGE encyclopedia of qualitative research methods. SAGE Publications, Inc, Thousand Oaks, CA2008
        • Madill A.
        • Jordan A.
        • Shirley C.
        Objectivity and reliability in qualitative analysis: realist, contextualist and radical constructionist epistemologies.
        Br J Psychol. 2000; 91: 1-20
        • Braun V.
        • Clarke V.
        Using thematic analysis in psychology.
        Qual Res Psychol. 2006; 3: 77-101
      1. United States Census Bureau. American Indian and Alaska Native alone or in combination with one or more other races: people who are American Indian or Alaska Native alone or in combination with one or more other races. 2012-2016 American Community Survey 5-year estimates. 2018. Available at: Accessed January 11, 2019.

        • World Health Organization
        International classification of functioning, disability and health: ICF.
        World Health Organization, Geneva, Switzerland2001
        • Alford V.M.
        • Remedios L.J.
        • Webb G.R.
        • Ewen S.
        The use of the International Classification of Functioning, Disability and Health (ICF) in indigenous healthcare: a systematic literature review.
        Int J Equity Health. 2013; 12: 32
        • Donovan D.M.
        • Thomas L.R.
        • Sigo R.L.
        • et al.
        Healing of the canoe: preliminary results of a culturally tailored intervention to prevent substance abuse and promote tribal identity for Native youth in two Pacific Northwest tribes.
        Am Indian Alsk Native Ment Health Res. 2015; 22: 42-76
        • Johansen B.E.
        Canoe journeys and cultural revival.
        Am Indian Cult Res J. 2012; 36: 131-142
        • Coster W.
        • Law M.
        • Bedell G.
        • Khetani M.
        • Cousins M.
        • Teplicky R.
        Development of the participation and environment measure for children and youth: conceptual basis.
        Disabil Rehabil. 2012; 34: 238
        • Gone J.P.
        ‘So I can be like a whiteman’: the cultural psychology of space and place in American Indian mental health.
        Cult Psychol. 2008; 14: 369-399
        • Goodkind J.R.
        • Gorman B.
        • Hess J.M.
        • Parker D.P.
        • Hough R.L.
        Reconsidering culturally competent approaches to American Indian healing and well-being.
        Qual Health Res. 2015; 25: 486-499
        • World Health Organization
        World report on disability 2011.
        World Health Organization, Geneva, Switzerland2011
        • Almasri N.A.
        • An M.
        • Palisano R.J.
        Parents’ perception of receiving family-centered care for their children with physical disabilities: a meta-analysis.
        Phys Occup Ther Pediatr. 2018; 38: 427-443
        • An M.
        • Palisano R.J.
        Family- professional collaboration in pediatric rehabilitation: a practice model.
        Disabil Rehabil. 2014; 36: 434
        • Carel H.
        • Kidd I.J.
        Epistemic injustice in healthcare: a philosophial analysis.
        Med Health Care Philos. 2014; 17: 529-540
        • Carel H.
        • Gyorffy G.
        Seen but not heard: children and epistemic injustice.
        Lancet. 2014; 384: 1256-1257
        • Bartlett C.
        • Marshall M.
        • Marshall A.
        Two-eyed seeing and other lessons learned within a co-learning journey of bringing together indigenous and mainstream knowledges and ways of knowing.
        J Environ Stud Sci. 2012; 2: 331-340
        • Australian Physiotherapy Association
        Indigenous health.
        (Available at:)
        • Canadian Physiotherapy Association
        The role of physiotherapy in aboriginal health care. 2014.
        (Available at:)
        • Canadian Association of Occupational Therapists
        CAOT position statement: occupational therapy and aboriginal health.
        (Available at:)
        • Jull J.E.
        • Giles A.R.
        Health equity, aboriginal peoples and occupational therapy.
        Can J Occup Ther. 2012; 79: 70-76
        • Hojjati A.
        • Beavis A.S.W.
        • Kassam A.
        • et al.
        Educational content related to postcolonialism and indigenous health inequities recommended for all rehabilitation students in Canada: a qualitative study.
        Disabil Rehabil. 2018; 40: 3206-3216
        • Jensen D.
        in: Given L. The SAGE encyclopedia of qualitative research methods. SAGE Publications, Inc, Thousand Oaks, CA2008
        • Ferguson G.M.
        • Nguyen J.
        • Iturbide M.I.
        Playing up and playing down cultural identity: introducing cultural influence and cultural variability.
        Cultur Divers Ethnic Minor Psychol. 2017; 23: 109-124
        • Russell J.C.
        • Fuentes M.
        • Bjornson K.
        Participation in daily life: influence on quality of life in ambulatory children with cerebral palsy.
        PMR. 2018; 10: 1185-1191