Disability

Culture, Health, Function, and Participation among American

Indian and Alaska Native Children and Youth with Disabilities:
an exploratory qualitative analysis

Anabel Castaneda, Rochelle Granados, & Ana Romero

HSCI 607: Journal Club
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Ice Breakers
Ice Breaker 1 Ice Breaker 2

What was the term used To your knowledge, what

to represent “disability” are some health
and how was it defined? disparities that American
Indian/Alaska Native
experience?
Think: Access to Health Care,
Nutrition, and Culture
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Introduction
OBJECTIVE/PURPOSE

This study aimed to understand the influence

of traditional culture of health, disability, and
health care services among American Indian
and Alaska Native (AI/AN) children and youth
with disabilities in order to inform the HYPOTHESIS
development of interventions to improve their
health and well-being.

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 ● Design
Methodology ● Population/Sample
● Outcome Measures

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Design
Type: Exploratory Descriptive Qualitative Analysis

● This study used a contextual constructionist epistemology;

● This epistemology assumes historical, cultural, and social processes influence
one’s knowledge and the personal and cultural perspectives of participants and
researchers shape the project.
● There was no intervention.

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Population/Sample
Participants, Recruitment, & Context

● Purposive and snowball sampling used to recruit participants, either:

1. Youth age 7 to 24-years-old identifying as AI/AN with functional differences of at least 6 months
2. The parent/legal guardian of an AI/AN child age 6 months to 17-years-old with functional
differences of at least 6 months, as long as at least one guardian identified as AI/AN.
● Sample consisted of 17 participants -- 4 youth and 13 parents (8 mothers and 5 fathers discussing
the experiences of 11 children with functional differences)
● Recruitment was done through local hospitals and rehabilitation centers
● Potential participants were screened after their medical records were reviewed

Selection Bias: the recruitment occurred within 3 specialized care facilities.

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Outcome Measures
Data Collection

● Interviews: Audio-recorded, in-depth, semi-structured interviews; in person or via phone

(parents present for interviews with children).
● Separate interview guides for parents/guardians and varied age groups.
● Question Domains (Table 1):
○ Daily Routines, Participation, Experience of Tribal Culture, Interactions with Healthcare
Systems
● Demographics
● Interviewer - Study leader (MF) is a mixed race American Indian physiatrist and health services
researcher who was raised on her tribe’s reservation with siblings with functional differences
○ Participants were told about the study leader’s background before the interview.

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Outcome Measures - Tables

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Outcome Measures
Data Analysis

● Interviews were transcribed verbatim

● World Health Organization’s International Classification

of Functioning, Disability, and Health (ICF) was used as
a framework to define codes.

● Themes and excerpts were shared with:

○ pediatric rehabilitation clinicians
○ pediatric health researchers
○ Indigenous health researchers
For additional perspectives on the data interpretation
and implications for rehabilitation practice.

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Results

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01 Role of traditional culture
in AI/AN health
Experiences participating
02 in cultural activities with
functional differences
Lack of recognition of
03 cultural needs by
providers
● Cultural practices
● Traditional foods
● Being a part of a large family
● Connected to traditional lands
● Children participation/involvement
is to a certain degree
● Family members aid in child’s
participation
● Lack of resources
● The cultural needs of AI/AN children
not addressed by healthcare or
rehabilitation providers.
● Bureaucratic reasons
● Discrimination
● Expectations
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Results
Evaluation

● The results relate to the research questions proposed, it addressed the barriers
experienced by AI/AN children with disabilities in relation to their cultural beliefs
and how it hindered their ability to achieve and ideal health.
● The tables and results narrative match, the tables presented described direct
quotes from the participants regarding the three main themes found.
● No actual values were reported.

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 Study
Discussion

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Study
Discussion
DISCUSSION
● AI/AN children and their families identified cultural participation as a key aspect of health.
○ Opportunities to improve inclusivity, child’s functional skills and, medical equipment
● Rehabilitation providers did not actively elicit these needs from families
○ Missed opportunities to unite rehabilitation expertise with cultural knowledge
● Inclusion strategies focus on removing barriers
○ There is difficulty of adapting activities while maintaining essential elements with cultural
meaning.
● Some participants perceived their cultural needs did not fit into the “business” of rehabilitation.

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Similar/Related Studies Referenced
This study’s finding of
participation in cultural
activities as a key factor in
Indigenous health is
supported by ethnographic
research among Indigenous
Australians with a disability
that found “what ‘health’
means to an Indigenous
person is intimately bound
up in what it means to ‘be
Indigenous’.”
King JA, Brough M, Knox M.
Negotiating disability and
colonisation: the lived
experience of Indigenous
Australians with a disability.
Disabil Soc. 2014;29(5): 738-
750.
Research with Māori families
regarding a culturally-based
conceptualization of pediatric
traumatic brain injury proposed
typical Western interventions
are “necessary but not
sufficient to meet Māori
needs.” Children received
necessary rehabilitation
services to address functional
impairments, but not culturally-
related functional needs.
Elder H. Indigenous theory
building for Maori children and
adolescents with traumatic brain
injury and their extended family.
Brain Impair. 2013;14(3):406-414.
Jull and Giles suggest that
Hojjati, et al. identified topics
the collaborative
important for rehabilitation
relationship between
professional education, so
rehabilitation professionals
that a postcolonial lens could
and Indigenous clients can
be used to respond to the
be improved if professionals
effects of colonization and
explore their underlying
racism permeating
assumptions, recognize
healthcare systems and
how healthcare systems
propagating inequities for
perpetuate power
Indigenous people.
inequities, and identify
when they are
Hojjati A, Beavis ASW, Kassam
perpetuating those
A, et al. Educational content
inequities.
related to postcolonialism and
indigenous health inequities
Jull JE, Giles AR. Health
recommended for all
equity, aboriginal peoples
rehabilitation students in
and occupational therapy.
Canada: a qualitative study.
Can J Occup Ther.
Disabil Rehabil. 2017:1-11.
2012;79(2):70-76.
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Similar/Related Studies Referenced

The following studies were referenced:

● King JA, Brough M, Knox M. (2014) Negotiating disability and colonisation: the lived experience of Indigenous
Australians with a disability.
● Elder H. (2013) Indigenous theory building for Maori children and adolescents with traumatic brain injury and their
extended family.
● Jull JE, Giles AR. (2012) Health equity, aboriginal peoples and occupational therapy.
● Hojjati A, Beavis ASW, Kassam A, et al. (2017) Educational content related to postcolonialism and indigenous health
inequities recommended for all rehabilitation students in Canada: a qualitative study.

● All the studies were conducted outside of the US.

● No studies have been pursued in the US to improve rehabilitation care of AI/AN people.

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Study Discussion
CONCLUSION

AI/AN children with disabilities and their families, experience barriers to

participation in cultural activities, making it hard for them to achieve their own
definition of health.

Rehab services have not identified or addressed culturally related functional

needs, indicating a need for the development of culturally-relevant
rehabilitation.

The conclusion is justified from the data.

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Study
Discussion
LIMITATIONS
● Population did not include experiences of children who have not accessed
subspecialized care.
● Generalized the functional capacity.
● It is not generalized, it can only applied to AI/AN population with a self-selection
bias
● No measure of cultural identity or cultural variability which can affect how AI/AN
culture influences the experience of childhood disability, health, and rehabilitation.

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 Study
Discussion
Ways to Improve Study
● Expand recruitment to other
locations.
● Set parameters for a child’s
functional ability.
● Focus on recruiting a larger child
sample.
Implications
● A need for the development of
culturally-relevant rehabilitation
service models for AI/AN
children and youth with
disabilities.
● Further research needs to be
conducted on AI/AN population.
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Discussion Questions

One participant If a check box on What are some ways

stated: “Health and intake forms we can address or
culture are all stated: Check change the “business
here if you would
under one perception” at medical
like your culture
umbrella.” Do you to be part of your facilities, when
agree or disagree? treatment plan? addressing
Why? What are some race/ethnicity/culture?
pros and cons to
this scenario?

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Reference
Fuentes M, Lent K, Culture, Health, Function, and Participation among
American Indian and Alaska Native Children and Youth with Disabilities:
an exploratory qualitative analysis, ARCHIVES OF PHYSICAL MEDICINE
AND REHABILITATION (2019), doi: https://
doi.org/10.1016/j.apmr.2018.11.016.

Thank You!
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