Culture, Health, Function, and Participation among American Indian and Alaska Native Children and Youth with Disabilities: an exploratory qualitative analysis

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 to 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 semi-structured interview questions regarding health beliefs, daily activities, participation in cultural activities, and experiences receiving or having their child receive healthcare 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.

American Indian and Alaska Native (AI/AN) children bear a disproportionate burden of injury,¹ preterm birth,² and other risk factors³ that can lead to disability. AI/AN children experience health disparities in multiple domains⁴ and people with disabilities also face systemic disadvantages and health inequities,^5,6 leaving AI/AN children with disabilities especially vulnerable to inequitable outcomes. Disparities in functional outcomes compared to non-Hispanic White children have been demonstrated for AI/AN children receiving inpatient rehabilitation,⁷ but overall little is known about the experience of AI/AN youth with disabilities.

Incorporating cultural perspectives has been essential in initiatives to improve AI/AN health.^8,9 Culture affects the experience of disability among Indigenous people,^10–13 but the experiences of AI/AN children and youth with disabilities have not been investigated with the intent of informing intervention development. In this study, we aim to understand the influence of traditional culture on health, disability, and health care services among AI/AN children and youth with disabilities to inform the development of interventions to improve their health and well-being.

METHODS

This is an exploratory qualitative descriptive study using a contextual constructionist epistemology; this epistemology assumes historical, cultural, and social processes influence one’s knowledge¹⁴ and the personal and cultural perspectives of participants and researchers shape the project.^15,16 This study was approved by the local institutional review board.

Participants, recruitment, and context

Purposive and snowball sampling was used to recruit participants who were either: (1) youth age 7 to 24-years-old identifying as AI/AN with functional differences of at least 6 months duration; or (2) the parent or legal guardian of an AI/AN child age 6 months to 17-years-old with functional differences of at least 6 months duration, as long as at least one guardian identified as AI/AN. Since some families do not use the term “disability,” this study instead used “functional difference,” defined as the child moving, communicating, caring for one's self, learning, or playing in a different way than most other people of a similar age. The six-month duration of impairment meant participants experienced the functional difference in a community setting.

Potential participants were ascertained from a list of self-identified AI/AN children who received care at a regional children's hospital's Rehabilitation Medicine, Neurodevelopmental Medicine, or Rehabilitation Therapy departments within the previous three years. The hospital serves a multistate region containing almost 10% of the United States' AI/AN population.¹⁷ Potential participants who met the screening criteria after medical record review were mailed a recruitment packet with study response card. This was followed by a call, text, or in-person meeting during clinical encounters to discuss study recruitment. Packets were mailed to 56 patients, with 10 patients and/or their families enrolling in the study; one study participant enrolled via snowball sampling. The first respondents were enrolled in the study. Of the 46 non-participants, six refused participation; four had insurmountable barriers to interview scheduling; seven had telephone numbers no longer in service; the remainder did not respond to communications or the research team halted active recruitment because no new themes were arising during interviews.

Data collection

Audio-recorded, in-depth, semi-structured interviews were conducted in person or via telephone. Parents were present for interviews with children. Separate interview guides for parents/guardians, 18 to 24-year-olds, 13 to 17-year-olds, and 7 to 12-year-olds included questions about their daily routines, participation, experience of tribal culture, and interactions with healthcare systems. (Table 1) Demographic information included participant’s age; age of the child for parent/guardian respondents; residence on/near one’s own tribal lands; and tribal affiliation categorized in cultural groupings (e.g., Coast Salish) rather than specific tribal affiliations to protect anonymity. Interviews lasted up to 30 minutes for children and 90 minutes for adults. Data collection occurred from November 2016 to February 2018.

Table 1.

Example Interview Questions for Parent/Guardian Interview

Domain	Sample probes
Daily Life	• Walk me through a typical day for your child, including what your child needs help with.  • What makes your child happy?  • How is school going for your child? What school programs or accommodations are available for your child?
Participation	• Tell me what your child does for fun  • What cultural activities do you and your family do?  • What makes it harder for your child to do different activities?
Experience of tribal culture	• What does being [tribal affiliation] mean to you?  • How does your child experience their [tribal affiliation] culture?  • What do you think most [tribal affiliation] people would say is important to be healthy?
Interactions with medical and rehabilitation systems	• What does rehabilitation mean to you?  • Tell me about a time your child’s doctors or therapists asked you about your culture  • Have you talked with your child’s providers about your culture? Tell me more about that.

All interviews were conducted by the study leader (MF), a mixed race American Indian physiatrist and health services researcher who was raised on her tribe’s reservation along with siblings with functional differences; her tribe’s traditional land includes areas served by the regional tertiary hospital. Participants were told about the study leader’s background before the interview. An exploration of how the researcher’s identity potentially impacted the study is in the supplementary materials. The other study team member (KL) is a biracial pediatric physical therapist who is currently a PhD student. Neither investigator was the primary rehabilitation provider for any of the children in the study.

Data analysis

Interviews were transcribed verbatim with identifiers removed. Dedoose^a, a qualitative data analysis software program, was used for analysis. Theoretical, rather than inductive, thematic analysis¹⁶ was undertaken with the a priori hypothesis that the experience of AI/AN children with disabilities and their families could be represented using the World Health Organization’s International Classification of Functioning, Disability, and Health (ICF), a cross-cultural biopsychosocial model of disability.^18,19 The ICF domains (body structure/function, activities, participation, personal contextual factors, and environmental contextual factors) were used as a framework to define initial codes, with expansion into more detailed codes after repeated readings of the transcripts by both investigators. For example, the detailed ICF environmental contextual factor domain-related codes included “terrain,” “AI/AN cultural factors,” and “health attitudes”. Codes related to the ICF participation domain included “cultural activities,” “school,” “physical activities,” and “sedentary activities”. Some excerpts were not related to ICF domains (such as those reflecting the receipt of health care) and codes for those excerpts were developed from repeated readings of the transcripts. The codes were then applied to the data inclusively by the lead investigator.

Using latent thematic analysis, the codes were collated into initial themes. For instance, the codes “health attitudes” and “AI/AN cultural factors” formed the initial theme “AI/AN health beliefs”. The coded excerpts for each initial theme were reviewed by the investigators, including cases where the participant’s data departed from the theme to generate main themes. These themes and excerpts were shared with pediatric rehabilitation clinicians, pediatric health researchers, and Indigenous health researchers for additional perspectives on the data interpretation and implications for rehabilitation practice. Then, the final themes were defined and quotes (with minor revisions for readability) were selected to illustrate each theme.¹⁶

RESULTS

Seventeen individuals participated in interviews, with four children/youth, eight mothers, and five fathers discussing the experiences of 11 children/youth with functional differences. There were a variety of tribal cultural groups (Coast Salish, Plains, Plateau, and Alaska Native) represented among the 13 AI/AN participants, with 4 additional non-AI/AN participants. Of the 11 children/youth who participated or whose parents completed an interview, six had cerebral palsy. Most of the respondents lived on or near their tribal lands. (Table 2)

Table 2:

Characteristics of participants

	Interview Participants (n=17)	Child/youth subjects of interview (n=11)
Gender, n (%)
Female	10 (59)	7 (64)
Age, years; mean (SD, range)
Children/youth	14.8 (7.3, 8-24)	8.9 (6.6, 1-24)
Parents/guardians	35 (6.3, 27-45)
Tribal group, n (%)
Coast Salish	5 (29)	5 (45)
Plateau	3 (18)	3 (27)
Plains	4 (24)	2 (18)
Alaska Native	1 (6)	1 (9)
Not American Indian or Alaska Native	4 (24)	--
Live on/near reservation/tribal land, n (%)
Yes, on reservation	4 (24)	3 (28)
Yes, near reservation	5 (29)	4 (36)
No	8 (47)	4 (36)
Child’s Health Condition, n (%)
Cerebral Palsy	--	6 (55)
Spinal Cord Dysfunction	--	2 (18)
Other*	--	3 (27)

Note:

^*Other health conditions include single cases of pediatric stroke, autism, and a neuromuscular condition that is not named to maintain anonymity.

Three main themes relating to the influence of AI/AN culture on the experience of health, functional difference, and receipt of health services were identified: (1) role of traditional culture in AI/AN health; (2) experiences participating in cultural activities with functional differences; and (3) lack of recognition of cultural needs by providers.

The role of traditional culture in health

Participants’ attitudes about health represented a holistic model common among many AI/AN communities. They described cultural practices and the everyday experience of culture as factors in health for AI/AN people. Traditional foods contributed to a healthy lifestyle, particularly when one was able to join in the food harvest. Several participants felt health stemmed from happiness and being together as a larger family. Connections to traditional lands were also identified as important to health. (Text Box 1)

Text Box 1. Participants' views of the role of traditional culture in health.

“Health and culture are all under one umbrella.” P17

“Being [tribal affiliation] is everything. From the culture to the traditional foods, to the way we are brought up. It’s our way of life…A healthy [tribal affiliation] person has family togetherness, happiness, and those sort of things” P14

“Something important is to keep the land sacred and keep the culture and heritage. What makes a [tribal affiliation] person healthy is a healthy diet, like fish, berries, and roots.” P13

“It’s a spiritual thing that we eat a lot of fish. If we just go buy fish it’s different than when you catch it and process it. It makes it healthier mentally.” P5

“What is important to be healthy? A connection to the land.” P4

Experiences participating in cultural activities with functional differences

Children participated in cultural activities as able given their functional differences, with facilitators and barriers moderating their participation. All the children were involved to some degree in cultural activities, primarily by being present at community-wide activities, such as powwows or welcoming protocols during the annual regional Canoe Journey.^20,21 In this sample, participation at community-wide events was often via observation, rather than direct involvement in the activity. (Text Box 2 )

Text Box 2. Perceptions of American Indian and Alaska Native children and youth with disabilities and participation in cultural activities.

Experiences with cultural activity participation

“When there’s something the whole community is involved in, like Canoe Journey*, we try to be as involved as we can, if it’s accessible.” P14

“At the powwows, I wasn’t able to dance, so I just watched.” P13

Facilitators of cultural participation

“We camp, hunt, fish, and pick berries. She is small and we can carry her…I think when she gets bigger it will be a challenge.” P5

“Her brother is in the early childhood program and we do a lot of family events that are tied with cultural activities.” P14

“My brother is like ‘Hey, let’s go fishing' and so I will go fishing with him.” P15

Barriers to cultural participation

“He has been walking at school and he gets so exhausted' his brother goes to drum group without him because he is usually tired by that time.” P17

Geographic Barriers

“I didn’t go to many tribal ceremonies because they were in places I couldn’t get to in my wheelchair. And my family likes to go huckleberry picking, but I can’t get out in the mountains.” P13

“Kids dig the clams to learn the traditional ways, but she wasn’t able to go on the beach [in her wheelchair], which was a bummer.” P14

Durable Medical Equipment

“The equipment isn’t really designed for anything other than going on completely paved roads or the mall. Because of that, in therapy we are always working on her ability to use the forearm crutches over bumps and lumps, like she would be walking [on the rough terrain where family picks berries].” P4

Community Barriers

“Canoe Journey* is really hard because there are so many people. It’s really hard to find parking and get all of his equipment through the crowd.” P17

“There wasn’t a sense of unity when tribal members went [to the powwow] with a disabled kid…I know you take care of elders, but there are people in our tribe that have disabilities. Escorting us to a seat would help us participate in these events.” P9

“She is not able to be involved in the tribal youth program. There’s no way that I know that the program would involve her. I think it would be helpful for the youth program to reach out and let us know that she is welcome. But I sometimes feel that is a lot to ask because she requires a lot of assistance.” P14

Note: *Canoe Journey is an annual event where members of tribal canoe families from throughout the region paddle from community to community, with a ceremonial community-wide welcoming protocol and meal at each stop en route.^{20, 21}

Cultural participation facilitated by family members

Family members’ efforts aided the child’s participation in cultural activities. Parents’ physical assistance enabled their child’s involvement, though this was not always feasible depending on the child’s size or impairment. Family members’, particularly siblings’, participation in cultural activities promoted the cultural participation of children with functional differences. School programs were also a potential venue for participation in cultural activities. (Table 2)

Barriers to participating in cultural activities

Many of the AI/AN children with functional differences experienced barriers to participation in cultural activities. The amount of energy expended by the child during daily activities at times made it difficult for them to pursue cultural activities. Lack of resources, such as wheelchair-accessible transportation, limited some families of children with functional differences from participating in cultural activities.

Physical environmental barriers, such as inaccessible spaces or rough terrain, prevented AI/AN children with functional differences from participating in desired cultural activities. The durable medical equipment used by AI/AN children with functional differences was often ill-suited to supporting participation in cultural activities. For instance, their wheelchairs did not allow access to the location of traditional food harvests. Only one family specifically worked with their rehabilitation therapist to improve the child’s ambulation skills in order to participate in a cultural activity occurring on uneven terrain. (Text Box 2)

Participants identified opportunities to improve the inclusion of people with functional differences in cultural activities within their community. Navigating crowds, lack of adequate reserved spaces for people with disabilities, and uncertainty about whether the child could be accommodated made participating in cultural activities challenging for AI/AN children with functional differences. Participants did not know of any formal efforts to improve inclusion for people with disabilities in their tribal communities. (Text Box 2)

Lack of recognition of cultural needs by providers

Despite the importance of cultural activities to AI/AN well-being, AI/AN children with functional differences did not have their culture or culturally-related functional needs addressed by their health care or rehabilitation providers. Most participants reported their AI/AN culture was never addressed, and those who were asked felt it was for bureaucratic reasons. Participants also perceived that discussing culture or cultural activities was not an expected part of rehabilitation. While participants felt it could be helpful for rehabilitation providers to know about their AI/AN culture, for the most part, they did not share cultural information independently. One family discussed cultural activities with their child’s rehabilitation providers, but only indirectly. Only one participant felt it would not be “useful” for rehabilitation providers to know more about their AI/AN culture or their culturally-related functional needs. However, this person also shared experiences of discrimination in a health care setting which could lead to a belief that emphasizing their AI/AN culture would lead to substandard care. (Text Box 3)

Text Box 3. Participants’ experiences interacting with health care providers.

Lack of cultural recognition by rehabilitation providers

“It’s more ‘Where are you from? Oh, you’re Native’ and then it’s pretty much all business.” P10

“They asked me in the beginning if we were Native American, but not in much detail. They didn’t want to know a whole lot…I grew up not really having to explain my culture. It would be nice for [providers] to know about [AI/AN culture].” P12

“Therapists have not specifically asked about her [AI/AN culture]. We bring up going berry picking and salmon fishing, but we haven’t pointed out that we are doing those things because she’s [AI/AN]. The therapists are hearing about them in the frame of reference that they are things we do living where we live, but not connected to [AI/AN culture].” P4

Experience with discrimination

“The doctor made me feel like she didn’t care, maybe because [my child] wasn’t white. That’s how they treat all the Native people, because a lot of people told me similar stories.” P16

DISCUSSION

This study examined the influence of AI/AN culture on health, disability, and rehabilitation services among AI/AN children with functional differences and a variety of tribal affiliations. These children and their parents identified participation in cultural activities as a key aspect of health for people from their tribal community. While all the AI/AN child participants occasionally attended community-wide events, their participation was often limited to observation and there were opportunities to improve the inclusivity for people with disabilities at these events. There is a mismatch between desired cultural activities and the child’s functional skills and/or durable medical equipment, making it hard for the child to participate more fully in the cultural activity. Despite these unmet culturally-related functional needs, rehabilitation providers did not actively elicit these needs from families. Generally, families did not share these needs with providers, thinking they were not the “business” of rehabilitation. These missed opportunities to unite rehabilitation expertise with a family and community’s cultural knowledge meant barriers to participation in cultural activities remained, making it more difficult for AI/AN children with functional differences to achieve their ideal health state as an Indigenous person.

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’.”¹³ King et al further posit that one’s “role as a community member is validated by [one’s] ability to participate” in the community.¹³ This study did not delineate what amount of participation was adequate to satisfy the need for cultural and community participation for AI/AN children with functional differences. However, the frequency of participation and level of involvement in an activity, as well as desire for change in frequency or involvement have been suggested as important indicators when considering participation outcomes.²² Many participants expressed a desire for change in their or their child’s participation in cultural activities, suggesting their cultural participation needs were not met.

Opportunities for inclusion in community cultural events

Participating in cultural activities is important for health and community membership,¹³ but participants in this study identified barriers to participation in community cultural events that might be surmounted through improved inclusivity in their community. Inclusion strategies often focus on removing environmental barriers hampering participation. However, efforts to improve inclusivity of some traditional cultural activities may be thwarted by the difficulty of adapting activities while maintaining the essential elements imbuing the activity with cultural meaning. Specific spaces and places are significant for health and well-being for AI/AN people;^23,24 picking huckleberries where one’s ancestors harvested berries is not equivalent to picking blueberries at a farm. Similarly, a tribal ceremony cannot always be moved to a different, accessible space. Ample accessible parking and reserved spaces for people with disabilities will ease participation in community-wide events, but additional efforts could help AI/AN people with disabilities actively engage in cultural activities. Community-based collaborations with elders and people with disabilities could help create programs to improve cultural activity participation among AI/AN people with disabilities, in turn strengthening their role in the community and health as an Indigenous person.

Implications for rehabilitation practice

Rehabilitation providers use many interventions to help individuals restore function, compensate for impairments, and achieve their optimal function in interaction with their environment.²⁵ For several of the children, there were potential rehabilitation solutions to their cultural participation barriers. However, AI/AN culture and culturally-related functional needs were not addressed during rehabilitation services. One might surmise that the families prioritize general functional needs over culturally-specific functional needs with their rehabilitation providers. 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.”¹² The AI/AN children from this study received necessary rehabilitation services to address functional impairments, but culturally-related functional needs did not make it onto the rehabilitation agenda, so services did not sufficiently meet these children’s cultural needs.

Family-professional collaboration is a key part of the family-centered health care services considered best practice for children.²⁶ Collaboration requires information sharing, shared decision-making, and incorporation of a family’s beliefs and needs,²⁷ but participants in this study reported that information about their cultural beliefs and needs was not exchanged during rehabilitation services. Some participants further perceived their cultural needs did not fit into the “business” of rehabilitation, likely preventing them from feeling empowered to spontaneously share their cultural needs. These participants may have self-censored their cultural information because they perceived their cultural knowledge and cultural needs to be less important than the professionals’ knowledge.²⁸ Families may not expect their culturally-discordant rehabilitation provider to be capable of addressing their culturally-related functional needs if the larger society lacks the interpretive framework to understand particular experiences,²⁹ in this case, the experience of being or raising an AI/AN child with disability.

The shared decision-making necessary for family-professional collaboration²⁷ between AI/AN families of children with disabilities and rehabilitation providers would benefit from “Two-Eyed Seeing”, where the strengths of Indigenous and Western knowledges are used together.³⁰ Rehabilitation professional organizations in Canada and Australia have called for culturally safe rehabilitation services to meet the unique needs of Indigenous people in those countries.^31-33 Jull and Giles suggest that the collaborative relationship between rehabilitation professionals and Indigenous clients can be improved if professionals explore their underlying assumptions, recognize how healthcare systems perpetuate power inequities, and identify when they are perpetuating those inequities.³⁴ Hojjati, et al. identified topics important for rehabilitation professional education, so that a postcolonial lens could be used to respond to the effects of colonization and racism permeating healthcare systems and propagating inequities for Indigenous people.³⁵ To our knowledge, similar work in the United States has not been pursued but could improve the rehabilitative care of AI/AN people. Further community-based and stakeholder-engaged research is needed to identify the key components, processes and outcomes of culturally-centered and culturally-safe rehabilitation services for AI/AN people with disabilities.

Limitations

Participants were purposively sampled and primarily recruited from AI/AN patients at a regional tertiary hospital with a self-selection bias. Rather than generalizability, which seeks to apply results across multiple environments, this inquiry requires consideration of the transferability of our findings to contexts beyond the scope of our study’s context.³⁶ It is unclear if the experiences of AI/AN children with functional differences who have not access subspecialized care would be similar to those in our sample. Almost all the participants were from different communities; however, the range of tribal affiliations suggests common themes related to the experience of childhood disability exist across different tribal groups. This study included no measure of cultural identity or cultural variability,³⁷ which are likely to affect how AI/AN culture influences the experience of childhood disability, health, and rehabilitation. However, we assume that potential participants who did not identify with AI/AN culture beyond listing it on a demographic form did not self-select into this study. We also did not assign any measures of the child’s functional ability, though previous research linking functional capacity and performance with participation³⁸ supports the idea that children with fewer or less severe functional impairments will have increased participation in cultural activities.

CONCLUSIONS

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 as Indigenous people. Rehabilitation services have not identified or addressed these culturally-related functional needs, indicating a need for the development of culturally-relevant rehabilitation service models for AI/AN children and youth with disabilities.

Abbreviations:

AI/AN

American Indian and Alaska Native

ICF

International Classification of Functioning, Disability, and Health