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Published in final edited form as: J Appl Res Intellect Disabil. 2019 Aug 22;33(3):327–333. doi: 10.1111/jar.12664

Exploring health and wellness among Native American adults with intellectual and/or developmental disabilities and their family caregivers

Heather J Williamson 1, Alissa C Brennan 2, Samantha F Tress 2, Darold H Joseph 3, Julie A Baldwin 4
PMCID: PMC9922475  NIHMSID: NIHMS1846899  PMID: 31436363

Abstract

Background:

Adults with intellectual and/or developmental disabilities (IDD) experience health inequities, and those who also identify as a member of an ethnic minority group face additional health inequities. In the United States, a majority of adults with IDD continue to be supported by family caregivers making their health equity also important. The purpose of this study was to explore how Native American adults with IDD and their family caregivers experience health and wellness.

Method:

This community-engaged research was guided by a Community Advisory Board (CAB) with study participants completing a Photovoice project.

Results:

Participants identified individual, family and community level influences on health and wellness including the importance of participation in meaningful activities and connection to culture.

Conclusions:

In order to address health inequities, more research is needed to understand health and wellness from the unique perspectives of individuals with IDD and those from racial and ethnic minority groups.

Keywords: disability, health equity, Native American, photovoice

1 |. INTRODUCTION

According to Healthy People 2016 (2016), health equity is defined as the attainment of the highest level of health for all people. In order to address health equity, a broader view of health framed within the social determinants of health lens is required. The social determinants of health identify how the conditions in which people reside and participate influence their health and wellness (Centers for Disease Control & Prevention, 2018). Individuals with disabilities, including those with intellectual and/or developmental disabilities (IDD), have been largely unrecognized as a group experiencing health disparities, in part, due to the view of disability as an illness (Krahn, Hammond, & Turner, 2006; Krahn, Walker, & Correa-De-Araujo, 2015). Disability is now understood as being a natural part of the human experience with social and environmental factors separate from the disability diagnosis influencing health and wellness outcomes (World Health Organization, 2011).

Adults with IDD experience higher rates of chronic disease and comorbid mental health conditions as compared to individuals without disabilities (Beange, Mcelduff, & Baker, 1995; Centers for Disease Control & Prevention, 2016; Henderson et al., 2008; Krahn et al., 2006). They are 4.5 times more likely to not engage in physical activity and are not provided adequate exposure to or education regarding health promotion (Havercamp, 2015; Krahn et al., 2006). The health inequities adults with IDD experience are due to not just their medical diagnosis, but also social factors (i.e. reduced income, social isolation, lack of education, communication barriers) and environmental factors (i.e. lack of access, lack of providers, transportation barriers), which influence their health and wellness (Alexander, Bullock, & Maring, 2008; Anderson et al., 2013; Krahn et al., 2006; Raymaker et al., 2016; Williamson, Contreras, Rodriguez, Smith, & Perkins, 2017).

Moreover, adults with IDD who are from racial and ethnic minority groups experience additional risk factors for having poor health outcomes, referred to as the “double burden” of being from two underserved populations (Blick, Franklin, Ellsworth, Havercamp, & Kornblau, 2015). This may be especially true for Native American people with IDD. Historical trauma among Native American (NA) populations in the United States has been associated with poor health outcomes (Sotero, 2006). Historical trauma refers to the cumulative and collective psychological effects across generations resulting from long-term traumatic events experienced by a population of people (Braveheart & Debruyn, 1998). Historical trauma continues to affect NA communities contributing to ongoing psychological, social and environment barriers, which influence health equity for NA with IDD (Sotero, 2006). For example, interdependent relationships between land, language, culture and history for NA communities often inform the attainment of the highest level of health or health equity (Holm, Pearson, & Chavis, 2003). However, the lens of health equity is impacted in major ways for NA communities due to the historical trauma experienced. Additionally, health equity considerations must also include considerations of the support people many individuals with IDD have in their lives.

In the United States, it is estimated that 78% of individuals with IDD continue to live with and be supported by a family caregiver (Braddock et al., 2015). A review of the literature identified that family caregivers of adults with IDD experience poor physical health, mental health and economic outcomes associated with their care providing role (Williamson & Perkins, 2014). Family caregivers often act as health advocates for their loved one, and more research is needed on gaining the perspectives of both individuals with IDD and their family caregivers (Grant & Ramcharan, 2001; Heller & Factor, 2008). Family cultural views can have an influence on the promotion of self-determination, and there is a need to consider evaluating supported decision making versus surrogate decision making among adults with IDD and their family caregivers (Shogren, 2013).

Self-determination is a critical concept for both the IDD and NA communities. Self-determination among adults with IDD means making one’s own decisions regarding one’s needs and wants and has been found to be a critical component for quality of life and necessary for addressing health disparities (Schalock & Alonso, 2002; Shogren, Wehmeyer, Reese, & O’Hara, 2006). Among Native Nations and tribes, self-determination is interpreted in a larger context of sociocultural and sociopolitical constructs (Lomawaima & McCarty, 2006). For the purpose of this study, the present authors present the term to be inclusive of the necessity of NAs to reclaim ownership and control of resources to best meet the needs of their communities in order to address the barriers with achieving health equity (Wallerstein & Duran, 2006).

There is a growing recognition of the importance of including individuals with IDD and NAs as partners in research efforts focused on addressing their health and wellness (Joss, Cookin, & Oldenburg, 2016; Wallerstein & Duran, 2006). Among individuals with IDD, utilizing community-engaged research strategies has shown to increase self-efficacy, enhance knowledge and encourage ownership of one’s health (Bigby, Frawley, & Ramcharan, 2013; Jurkowski & Paul-Ward, 2007; Kramer, Kramer, Garcia-Iriarte, & Hammel, 2011). Photovoice is a community-engaged method in which participants take photographs to share their stories regarding an identified issue (Catalani & Minkler, 2010). Photovoice has been used as a community-engaged research method successfully with IDD populations as well as with NA populations (Brake, Schlein, Miller, & Walton, 2012; Holkup, Tripp-Reimer, Salois, & Weinert, 2004; Jennings & Lowe, 2013; Jurkowski & Paul-Ward, 2007; Paiewonsky, 2011). However, no published research to date has utilized Photovoice with individuals who identify as both NA and having an IDD.

Acknowledging the importance of self-determination for individuals with IDD and the ongoing role of family caregivers, this community-engaged research project utilized Photovoice with NA adults with IDD to explore how they define and achieve health and wellness in their daily lives. In accordance with the social determinants of health, the Social Ecological Model (SEM) served as a framework for this project recognizing the multiple levels of influence on health and wellness including individual activities, interpersonal relationships and community context (Stokols, 1996).

2 |. METHOD

This community-engaged project was overseen by a Community Advisory Board (CAB) which included seven community members who have a direct personal or professional connection to the NA and/or IDD community. The CAB met three times over a year with the research team providing guidance on working with NA adults with IDD, encouraging self-determination throughout recruitment, data collection and data analysis. The CAB provided direct connections to recommended agencies or individuals who could inform potential participants in the project. In addition, the research team also received guidance from the university’s Tribal Liaison on appropriate recruitment methods which would honour NA sovereignty, including not identifying any Native Nation affiliation of participants and not recruiting on Native Nation lands. This study was reviewed and approved by the university’s Institutional Review Board.

In a review of qualitative methodology approaches with individuals with IDD, Photovoice and semi-structured interviews were recommended as the most effective strategies to fully engage individuals with IDD and to gather the broadest scope of information (Ottman & Crosbie, 2013). Previous Photovoice projects with individuals with IDD also recommend including incentives along the way, involvement of their support person/family caregivers and completing individual interviews regarding photographs prior to larger group discussions (Conder, Milner, & Mirfin-Veitch, 2011; Jurkowski & Paul-Ward, 2007). Therefore, this project involved participants taking photographs, completing in-depth individual interviews and provided incentives for each step of the Photovoice project.

A systematic literature review of existing Photovoice projects found that most projects had an average of 13 participants, and previous Photovoice projects involving adults with IDD had sample sizes of four to nine participants (Brake et al., 2012; Catalani & Minkler, 2010; Jurkowski & Paul-Ward, 2007; Paiewonsky, 2011). Therefore, the goal sample size for this project was minimally four participants and up to a max of 10 participants. Following the guidance from the CAB and the university’s Tribal Liaison, individuals with IDD were eligible to join the study if they were adults (ages 18 years and older), identified as NA, identified as having an IDD and did not live on Native Nation lands. Acknowledging the critical role of caregivers in the lives of individuals with IDD, the eligible individuals with IDD also self-selected a support person in their lives to participate in the study.

The CAB provided critical guidance on obtaining informed consent for study participants. The informed consent form designed by the CAB included photographic guided imagery and teach-back questions to check understanding. The universal nature of this consent meant every participant, including the adult with IDD and their family caregiver, read the exact same document, and every participant was able to answer the teach-back questions to confirm understanding. The teach-back questions were modelled after a previous study involving individuals with IDD (Horner-Johnson & Bailey, 2013) and were as follows: (a) Please tell me in your own words, what is this study about? (b) What will you be doing if you take part in this study? (c) What are the risks of being in this study? (d) When I say your choice to join the study is voluntary, what does that mean? and (e) What can you do if you start the study but don’t want to finish? Four dyads (N = 8) agreed to participate in the Photovoice project. The four NA adults with IDD were all men and ranged in age from 19 to 24 years. The four caregivers included an uncle, grandmother and two mothers who ranged in age from 38 to 63 years.

The Photovoice project took place in five steps including (1) Group Orientation Meeting; (2) Taking Photos; (3) Individual Interviews; (4) Photo Project Group Meeting; and (5) Group Meeting with CAB to Present Photo Projects and decides on future action. The CAB recommended that food be provided at each group meeting and that the participants select the incentives they would be eligible to receive throughout the project. Therefore, participants were asked for gift-card preferences during the informed consent process. Participants received self-selected gift-card incentives during steps one, three, four and five.

2.1 |. Step 1: Group orientation meeting

Following guidance from the CAB, the first group meeting involved spending time with the participants having them identify the focus of their photographs by discussing what the terms health and wellness meant to them. In order to have an open discussion about health and wellness without guiding the more westernized definitions, everyone played a game called talk-n-toss. Talk-n-toss involved participants answering questions depending on the colour of the beach ball strip their hand landed on and included broad topics related to culture, individual activities, relaxation and social events. See Appendix 1 for the Talk-n-toss questions. After this activity, participants were each given a 16-megapixel digital camera. Participants spent time practicing using their cameras, and the photograph taking process was reviewed.

2.2 |. Steps 2 and 3: Taking photos and individual interviews

On their own time over the course of a month, all eight participants then each took their own photographs regarding what they do to feel healthy and well. Then, a member of the research team met with each individual to review their digital photographs during an in-depth interview. See Appendix 1 for the interview questions. With the participants’ permission, the interviews were recorded and transcribed for later analysis. The participants selected the photographs they wanted to be printed to create a photograph project they would share with other participants and the CAB.

2.3 |. Steps 4 and 5: Photo Project Group Meeting & Group Meeting with CAB

Participants then met again as a group to select how they would like to build their photograph projects to share with the CAB. Participants produced photograph books or photograph display boards which were shared at a later date during the final group meeting with the CAB. In the final meeting with the CAB, a discussion ensued regarding how the community could best promote health and wellness for NA adults with IDD. One suggestion included writing a grant to help local adults with IDD engage more with their community and support their workforce capabilities through developing service learning opportunities. Careful notes from the group meetings, along with transcribed interview data, were individually coded by two members of the research team. Coding was reviewed collectively using the Social Ecological Model (SEM) as a framework to identify key themes from the research project.

3 |. RESULTS

Following the SEM, the results are framed at the individual, family and community levels. See Figure 1 for a summary of themes discussed by the individual with IDD and/or the caregiver. The five themes in the individual level included being active, work–life balance, hobbies, work and healthy eating. To describe being active, many participants took photographs of gyms, sporting fields and Special Olympics events and related physical activity to their own definition of health and wellness. All four young men with IDD work in competitive employment settings, and all took photographs of their job setting. This individual theme of work also factors into the themes of work–life balance and hobbies. Many participants took photographs of their hobbies in order to balance and decompress from their work days. Some photographs included lego sets, tree climbing, video games and/or hanging with friends and family. The last theme of healthy eating included various photographs of cooking in the kitchen at home, vending machine options between soda and water and an individual eating a healthy snack of a banana.

FIGURE 1.

FIGURE 1

Open in a new tab

Summary of themes

I = Individual with IDD, C = Caregiver

At the family level, the seven themes included traditional foods, quality time together, church, spirituality, laughter, being a role model and pets. Many pictures of traditional NA dishes or cooking in the kitchen were shared among the group. Not only do these pictures represent a participant’s heritage but also displays quality time with family members. Other pictures depicting quality time included specific town/cities, hiking areas and video games. Caregivers emphasized how spending time with family members relates to their definition of being healthy and well. Following the theme of being a role model, many caregivers mentioned passing down important skills to younger generations. The individuals with IDD described their role caring for younger children in the family as part of their health and wellness. Overall, the theme of familial relationships and spending time together was a large contributor to many participants’ definition of health and wellness.

The five themes at the community level included visiting the family doctor, Special Olympics events and teams, friends/mentors, resources in their local town and connection to the reservation. One participant shared a photograph of a local health provider and wellness centre located in and serving the local urban NA community. He described his long-lasting relationship with his trustworthy and reliable primary doctor. Many of the participants took photographs and described how Special Olympics greatly impacted their lives and in particular their participation in their community and even communities abroad. Some of these photographs included a field hockey game, cross-country skiing trip and basketball courts. One participant described how playing on the Special Olympics basketball team connected him to friends and coaches as mentors and established a sense of community. Two other participants took photographs of memorabilia from their trip abroad to represent the United States Special Olympics cross-country skiing team. They both expressed what a unique opportunity this was to represent not only the Special Olympics community but also their home community. Lastly, one caregiver shared multiple photographs where she was raised as part of a Native Nation. This participant described how the photograph represents memories, cultural connections and ultimately contributes to her own definition of health and wellness. Being able to show her grandchildren the place where she grew up ties into her cultural identity as a NA and passing on cultural traditions.

As described in the methods section, all the participants shared their photographs and definitions of health and wellness with the CAB members to identify areas for future action. The participants opted to not share their photographs outside of this project. Participants identified the importance of participation in their communities and for many that occurred through employment. Members of the CAB, the research team and some of the participants continued to collaborate after this project on efforts to build capacity for competitive employment of NA individuals with IDD in the community. In addition, participants also expressed interest in potential future advocacy efforts and in promoting Special Olympics to others.

4 |. DISCUSSION

Recognizing the importance of self-determination for the NA and IDD communities, participants in this research study were asked to take photographs and share stories regarding how they defined health and wellness. In this project, health and wellness from the perspectives of participants was about individual activities, but also connection to family, to community and ties to culture. Among individuals with IDD, participation in community activities is related to better health and wellness (Eismann et al., 2017). Participation in community for NA adults with IDD in this project occurred through structured sporting events and also competitive employment. For NA adults with IDD and their family caregivers, connection to family and culture involved sharing family history tied to Native Nations and traditional foods, while also providing care and support across generations.

Utilizing a community-engaged research approach required a great deal of time and flexibility on behalf of the study participants, the CAB and the university-based research members. Finding time to meet as a group was eased by finding a meeting location familiar to participants and saving the dates/times far in advance. Some participants required more support to successfully use their cameras and others required regular visits to the family home to maintain communication about the project. While participants opted to not share their photographs outside of the project, the project has created relationships among members of the CAB, participants and community members who are still engaged in ongoing efforts to build capacity for competitive employment in the community.

The NA population in the United States is diverse, with each Native Nation having a unique history and culture (Taualii, Quenga, & Samoa, 2014). The IDD community is also a very diverse population with various support requirements. Therefore, this study cannot be generalized to all NA adults with IDD, nor their NA family caregivers. Additionally, the NA adults with IDD in this study identified as male, and future work would ideally be more gender diverse and inclusive of other gender identities. However, given the existing health disparities among both NA and IDD populations, and the paucity of research regarding adults with IDD who also identify as NA, this project is still valuable to begin to understand their health and wellness. Additionally, with nearly 7 out of 10 American Indian and Alaska Natives now living off Native Nation lands and in urban areas, it is important to begin to understand health and wellness among urban dwelling NA in the United States (Urban Indian Health Institute, 2013).

In order to address health equity, more research is needed to understand the social determinants of health for marginalized populations experiencing health inequities. This project involved two historically marginalized populations in the United States, individuals with IDD and the NA community. In this study, participants defined their health and wellness as being influenced by individual, family and community-based activities. Access to competitive employment was important for meaningful participation for individuals with IDD, and more research is needed to build work environments that promote long-term competitive employment (Ellenkamp, Brouwers, Embregts, Joosen, & van Weeghel, 2016). Additionally, the practices of NA with IDD and their caregivers demonstrated a pride when engaging in activities such as sharing their traditional foods and returning to their Native home communities. These observations demonstrate a connection to culture that serves an important role in health and wellness. Urban NAs with IDD and their caregivers in this study do engage in behaviours to facilitate a connection to community, demonstrating facets that inform aspects of the social determinants of health from their experiences. More efforts are needed to identify ways in which urban NA with IDD and their caregivers can find structural ways to feel connected to culture (Weaver, 2012).

The growing population of NA living in urban communities presents the opportunity to further examine the barriers experienced by NA with IDD and their caregivers in achieving health equity. Additionally, inviting this community to share their perspectives offers insight to facets that influence their engagement with activities that promote positive health and wellness. Lastly, the interactions with social and institutional structures by NA with IDD can offer insight about factors that facilitate or hinder achievement of health equity.

ACKNOWLEDGMENTS

This work was supported by the American Occupational Therapy Foundation Intervention Research Grant, under Grant AOTFWilliamson2016, and Northern Arizona University Faculty Grant Program. There are no restrictions from the funding body.

Funding information

American Occupational Therapy Foundation, Grant/Award Number: AOTFWilliamson2016; Northern Arizona University Faculty Grant Program

APPENDIX 1

TALK-N-TOSS QUESTIONS

Blue—Questions about different types of exercises

Yellow—Questions about different ways to relax

Red—Questions about different people to talk to/social events

White—Question about definition of health

Blue questions:

  • Do you like to go on walks or runs?

  • Do you like to be outside?

  • Do you like to swim?

  • Do you like to play on teams?

  • Do you like to bike?

  • Do you like to ride horses?

  • Do you like to herd sheep?

  • Do you like to haul water or wood?

  • Do you like to dance in ceremonies?

Yellow questions:

  • Do you have a pet?

  • Do you like to read?

  • Do you like to be in quiet places?

  • Do you like to listen to music?

  • Do you like to take time for yourself?

  • Do you like to watch movies or tv?

  • Do you like to play videogames?

  • Do you like to be outside?

  • What are ways you like to relax?

Red questions:

  • What does your family do together?

  • What do you do with your friends?

  • Tell us about your job?

  • Do you like to hang out with friends or family?

  • Do you attend ceremonies?

  • Do you know about or currently go to NACA Wellness Center?

  • How often do you go to reservation or spiritual lands?

White question:

  • How do you define health?

APPENDIX 2

INTERVIEW PROTOCOL

Thank you for spending time with me today to discuss the photos you took about things you do to make you feel healthy and well. We are going to spend a little time today looking through the photos and then deciding which photos you want to share with the larger group. With your permission, I would like to record our conversation so I don’t miss any of your comments.

Which photo should we look at first? (participants will select the number of photos they chose to share)

With each photo the interviewer will ask:

  1. What is happening in the photo?

    Probe: What do you see here?

  2. What do you think this photo shows us about being healthy and well?

    Probe: What in the photo is important to notice? How is this photo about health access?

  3. Why did you take this photo?

    Probe: How is this photo about health access?

Repeat the above questions with each photo the participant wants to talk about.

Let’s decide which photos you would like to share with the group.

Footnotes

CONFLICT OF INTEREST

There are no conflicts of interest from the authors, and all authors contributed to and reviewed the approved manuscript and agree on the author order listed on the page.

REFERENCES

  1. Alexander LM, Bullock K, & Maring JR (2008). Challenges in the recognition and management of age-related conditions in older adults with developmental disabilities. Topics in Geriatric Rehabilitation, 24(1), 12–25. 10.1097/01.TGR.0000311403.16802.f8 [DOI] [Google Scholar]
  2. Anderson L, Humphries K, McDermott S, Marks B, Sisirak J, & Larson SA (2013). The state of the science of health and wellness for adults with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 51(5), 385–398. 10.1352/0047-6765-51.6.fmii [DOI] [PMC free article] [PubMed] [Google Scholar]
  3. Beange H, Mcelduff A, & Baker W (1995). Medical disorders of adults with mental retardation: A population study. American Journal on Mental Retardation, 99(6), 595–604. [PubMed] [Google Scholar]
  4. Bigby C, Frawley P, & Ramcharan P (2013). Conceptualizing inclusive research with people with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 27, 3–12. 10.1111/jar.12083 [DOI] [PubMed] [Google Scholar]
  5. Blick MA, Franklin M, Ellsworth D, Havercamp SM, & Kornblau B (2015). The double burden: Health disparities among people of color living with disabilities. Retrieved from http://nisonger.osu.edu/sites/default/files/u4/the_double_burden_health_disparities_among_people_of_color_living_with_disabilities.pdf
  6. Braddock D, Hemp R, Rizzolo MC, Tanis ES, Haffer L, & Wu J (2015). The state of the states in intellectual and developmental disabilities: Emerging from the great recession (10th ed.). Washington, DC: American Association on Intellectual and Developmental Disabilities. [Google Scholar]
  7. Brake L, Schlein S, Miller K, & Walton G (2012). Photovoice: A tour through the camera lens of self-advocates. Self Advocacy and Systems Change Journal, 3(1), 44–53. 10.1111/jar.12083 [DOI] [Google Scholar]
  8. Braveheart M, & Debruyn M (1998). The American Indian Holocaust: Healing historical unresolved grief. American Indian and Alaska Native Mental Health Research, 8(2), 56–78. [PubMed] [Google Scholar]
  9. Catalani C, & Minkler M (2010). Photovoice: A review of the literature in health and public health. Health Education and Behavior, 37, 424–450. 10.1177/1090198109342084 [DOI] [PubMed] [Google Scholar]
  10. Centers for Disease Control and Prevention (2016). Disability and health data system. Retrieved from http://www.cdc.gov/ncbddd/disabilityandhealth/dhds.html
  11. Centers for Disease Control and Prevention (2018). Social determinants of health. Retrieved from https://www.cdc.gov/socialdeterminants/
  12. Conder J, Milner P, & Mirfin-Veitch B (2011). Reflections on a participatory project: The rewards and challenges for the lead researchers. Journal of Intellectual and Developmental Disability, 36(1), 39–48. 10.3109/13668250.2010.548753 [DOI] [PubMed] [Google Scholar]
  13. Eismann MM, Weisshar R, Capretta C, Cleary DS, Kirby AV, & Persch AC (2017). Characteristics of students receiving occupational therapy services in transition and factors related to postsecondary success. The American Journal of Occupational Therapy, 71(3), 7103100010p7103100011–7103100010p7103100018. 10.5014/ajot.2017.024927 [DOI] [PubMed] [Google Scholar]
  14. Ellenkamp JJ, Brouwers EP, Embregts PJ, Joosen MC, & van Weeghel J (2016). Work environment-related factors in obtaining and maintaining work in a competitive employment setting for employees with intellectual disabilities: A systematic review. Journal of Occupational Rehabilitation, 26(1), 56–69. 10.1007/s10926-015-9586-1 [DOI] [PMC free article] [PubMed] [Google Scholar]
  15. Grant G, & Ramcharan P (2001). Views and experiences of people with intellectual disabilities and their families: The family perspective. Journal of Applied Research in Intellectual Disabilities, 14(4), 364–380. 10.1046/j.13602322.2001.00077.x [DOI] [Google Scholar]
  16. Havercamp SM, & Scott HM (2015). National health surveillance of adults with disabilities, adults with intellectual and developmental disabilities, and adults with no disabilities. Disability and Health Journal, 8(2), 165–172. 10.1016/j.dhjo.2014.11.002 [DOI] [PubMed] [Google Scholar]
  17. Healthy People 2020 (2016). Disparities. Retrieved from https://www.healthypeople.gov/2020/about/foundation-health-measures/Disparities
  18. Heller T, & Factor A (2008). Family support and intergenerational caregiving: Report from the state of science in aging and developmental disabilities conference. Disability and Health Journal, 1(3), 131–135. 10.1016/j.dhjo.2008.04.004 [DOI] [PubMed] [Google Scholar]
  19. Henderson C, Robinson L, Davidson P, Haveman M, Janicki M, & Albertini G (2008). Overweight status, obesity, and risk factors for coronary heart disease in adults with intellectual disability. Journal of Policy and Practice in Intellectual Disabilities, 5(3), 174–177. 10.1111/j.1741-1130.2008.00170.x [DOI] [Google Scholar]
  20. Holkup P, Tripp-Reimer T, Salois E, & Weinert C (2004). Community-based participatory research: An approach to intervention research with a Native American community. Advances in Nursing Science, 27(3), 162–175. 10.1097/00012272-200407000-00002 [DOI] [PMC free article] [PubMed] [Google Scholar]
  21. Holm T, Pearson DJ, & Chavis B (2003). Peoplehood: A model for the extension of sovereignty in American Indian Studies. WICAZO Sa Review, 18(1), 7–24. 10.1353/wic.2003.0004 [DOI] [Google Scholar]
  22. Horner-Johnson W, & Bailey D (2013). Assessing understanding and obtaining consent from adults with intellectual disabilities for a health promotion study. Journal of Policy and Practice in Intellectual Disabilities, 10(3), 1–10. 10.1111/jppi.12048 [DOI] [PMC free article] [PubMed] [Google Scholar]
  23. Jennings D, & Lowe J (2013). Photovoice: Giving voice to indigenous youth. Journal of Aboriginal and Indigenous Community Health, 11(3), 521–537. [Google Scholar]
  24. Joss N, Cookin A, & Oldenburg B (2016). A scoping review of end use involvement in disability research. Disability and Health Journal, 9(189–196), 10.1016/j.dhjo.2015.10.001 [DOI] [PubMed] [Google Scholar]
  25. Jurkowski J, & Paul-Ward A (2007). Photovoice with vulnerable populations: Addressing disparities in health promotion among people with intellectual disabilities. Health Promotion and Practice, 8(4), 358–365. 10.1177/1524839906292181 [DOI] [PubMed] [Google Scholar]
  26. Krahn GL, Hammond L, & Turner A (2006). A cascade of disparities: Health and health care access for people with intellectual disabilities. Mental Retardation and Developmental Disabilities, 12, 70–82. 10.1002/mrdd.20098 [DOI] [PubMed] [Google Scholar]
  27. Krahn G, Walker D, & Correa-De-Araujo R (2015). Persons with disabilities as an unrecognized health disparity population. American Journal of Public Health, 105(S2), S198–S206. 10.2105/AJPH.2014.302182 [DOI] [PMC free article] [PubMed] [Google Scholar]
  28. Kramer J, Kramer J, Garcia-Iriarte E, & Hammel J (2011). Following through to the end: The use of inclusive strategies to analyze and interpret data in participatory action research with individuals with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 24, 263–273. 10.1111/j.1468-3148.2010.00602.x [DOI] [Google Scholar]
  29. Lomawaima KT, & McCarty TL (2006). To remain and Indian: Lessons in Democracy from a century of Native American Education. New York, NY: Teachers College Press. [Google Scholar]
  30. Ottman G, & Crosbie J (2013). Mixed method approaches in openended, qualitative, exploratory research involving people with intellectual disabilities: A comparative methods study. Journal of Intellectual Disabilities, 17(2), 182–197. 10.1177/1744629513494927 [DOI] [PubMed] [Google Scholar]
  31. Paiewonsky M (2011). Hitting the reset button on education: Student reports on going to college. Career Development for Exceptional Individuals, 34(1), 31–44. 10.1177/0885728811399277 [DOI] [Google Scholar]
  32. Raymaker DM, McDonald KE, Ashkenazy E, Gerrity M, Baggs AM, Kripke C, … Nicolaidis C (2016). Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities. Autism, 21(8), 972–984. 10.1177/1362361316661261 [DOI] [PMC free article] [PubMed] [Google Scholar]
  33. Schalock R, & Alonso MAV (2002). Family-centered quality of life. In Braddock DL (Ed.), Handbook on quality of life for human service practitioners (pp. 165–180). Washington, DC: Association on Mental Retardation. [Google Scholar]
  34. Shogren KA (2013). A social-ecological analysis of the self-determination literature. Intellectual and Developmental Disabilities, 51(6), 496–511. 10.1352/1934-9556-51.6.496 [DOI] [PubMed] [Google Scholar]
  35. Shogren KA, Wehmeyer ML, Reese RM, & O’Hara D (2006). Promoting self-determination in health and medical care: A critical component of addressing health disparities in people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 3(2), 105–113. 10.1111/j.1741-1130.2006.00061.x [DOI] [Google Scholar]
  36. Sotero M (2006). A conceptual model of Historical Trauma: Implications for public health practice and research. Journal of Health Disparities Research and Practice, 1(1), 93–108. [Google Scholar]
  37. Stokols D (1996). Translating social ecological theory into guidelines for community health promotion. American Journal of Health Promotion, 10(4), 282–298. 10.4278/0890-1171-10.4.282 [DOI] [PubMed] [Google Scholar]
  38. Taualii M, Quenga J, & Samoa R (2014). Understanding diversity among indigenous people: Conducting research with Native Hawaiians and Pacific Islanders. In Arambula Solomon TG & Randall LL (Eds.), Conducting health research with Native American communities (pp. 109–127). Washington, DC: APHA Press. [Google Scholar]
  39. Urban Indian Health Institute (2013). U.S. census marks increase in Urban American Indians and Alaska Natives. Retrieved from http://www.uihi.org/wp-content/uploads/2013/09/Broadcast_Census-Number_FINAL_v2.pdf
  40. Wallerstein N, & Duran B (2006). Using community-based participatory research to address health disparities. Health Promotion Practice, 7, 312–323. 10.1177/1524839906289376 [DOI] [PubMed] [Google Scholar]
  41. Weaver H (2012). Urban and indigenous: The challenges of being a Native American in the city. Journal of Community Practice, 20(4), 470–488. 10.1080/10705422.2012.732001 [DOI] [Google Scholar]
  42. Williamson HJ, Contreras GM, Rodriguez ES, Smith JM, & Perkins EA (2017). Health care access for adults with intellectual and developmental disabilities: A scoping review. OTJR: Occupation, Participation, and Health, 37(4), 227–236. 10.1177/1539449217714148 [DOI] [PubMed] [Google Scholar]
  43. Williamson HJ, & Perkins EA (2014). Family caregivers of adults with intellectual and developmental disabilities: Outcomes associated with U.S. services and supports. Intellectual and Developmental Disabilities, 52(2), 147–159. 10.1352/1934-9556-52.2.147 [DOI] [PubMed] [Google Scholar]
  44. World Health Organization (2011). World report on disability. Retrieved from http://www.who.int/disabilities/world_report/2011/report.pdf

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