Re-framing Disease: Dramatic Increases In Type 2 Diabetes Among American Indian And Alaska Native Youth And Young Adults – Sarah T. Manfred

Established in 1955, the Indian Health Services (IHS) serves 1.5 million American Indian and Alaska Natives (AI/AN) through a system of hospitals and clinics within or near reservations. The IHS or a given tribe runs these various health centers. However, not all of the 4.1 million individuals whom the Census Bureau classifies as American Indian or Alaska Native have access to these services because the federal government does not recognize some tribes. Furthermore, many of them live in urban areas, away from any reservation or IHS health care center.

Many diseases have arisen to epidemic proportions among AI/AN resulting in a life expectancy that is 2.4 years less than the US all race rate. More specifically, the rate of diabetes mortality among AI/AN is 189% higher than those for other Americans (3). AI/AN within the IHS system who have diabetes have higher mortality rates than the US all race rate for diabetes mortality (3). All the more concerning is the increasing prevalence of Type 2 diabetes among AI/AN youth, which the IHS has just begun to seriously administer with prevention programs(3). All age groups between 15 and 34 years have experienced substantial increases in the prevalence of diabetes (2, 3). The IHS diabetes prevention programs for youth and young adults do not possess the scope needed to effectively decrease the high prevalence of Type 2 diabetes among them.
Framing Type 2 Diabetes

The IHS does not effectively frame their outlook on Type 2 Diabetes when they target youth and young adults. The IHS has not been able to decrease the incidence and prevalence of Type 2 diabetes among young adults because of its overuse of the Health Belief Model. As mentioned in the course of class lectures and in readings, sometimes the assumptions that drive the model are insufficient. It assumes that perceived susceptibility and severity coupled with perceived benefits and barriers drive intention and, in turn, behavior (4). It does not take into account self-efficacy, environment, or social values. If a young adult understands the risks and severity of diabetes, but has no self-efficacy because there no nearby grocery store to buy nutritious foods or safe place to exercise, then teaching the Health Belief Model does not translate into healthier behavior. Or imagine a young mother working to support her children, and she is just diagnosed with diabetes. She may work all day and take care of her children in the evening, so it is not possible for her to exercise or attend nutrition classes.

Not only are rates of type 2 diabetes rising in young adults, but it is affecting younger age groups. It is imperative that the IHS prevent this disease among the youth as it has not done for the elder population (3, 5). Though the IHS lists that the majority of their programs offer weight management, diabetes prevention, and nutrition classes for youth, it’s necessary to question the nature of these programs (6). They portray a traditional emphasis on the Health Belief Model and its role in education. The increasing prevalence of health risk factors for diabetes and diagnosis of disease suggest that the traditional educational approach needs a reassessment.

The younger generations respond to more interactive and community based programs (7-9). Input from youth rarely enters into the planning stage, yet it can mean the difference between an effective intervention and a mediocre one. For example, the program for First California Native Youth Diabetes Prevention & Treatment Conference includes no dialogue with youth (10). While these types of conferences disseminate important clinical information, interventions may be better served if they couple this information with feedback from those for whom the interventions are targeted. The portrayal of this disease needs to be reframed in a manner that aligns with the thoughts and opinions of the youth and young adults. Interventions may also need to be specific to each age group; an intervention for middle school children about overweight should differ from one for twenty-year-olds with pre-diabetes. Interventions for younger children should include their family with which they live, while those for young adults living on their own may not need to (7).

Programs fail to support kids who already have disease. Resources on the IHS website outline nothing in the way of support for youth who already have Type 2 diabetes (11). Though this type of diabetes has typically been one to affect older adults, it no longer is, and young adults may have an entirely different set of concerns associated with the disease (12). If Type 2 diabetes is portrayed as one that only the elderly get, how will the 18 year old respond when he or she is diagnosed? Considering adolescence and young adulthood is already a trying time, a diabetes diagnosis can prove to be devastating. Self-esteem may plummet and along with it – self-efficacy. No studies were found that examine the effect of this disease diagnosis specifically on AI/AN youth. The IHS website provided no information on programs aimed to help young adults cope with a diagnosis (11).

As Type 2 diabetes becomes a disease that harms individuals of all ages, prevention programs must re-frame the disease to address the new and different concerns of young adults. They may worry how diabetes will affect their ability to do what their peers do. They may also worry about their futures and whether or not they can live healthy and enjoyable lives. Without appropriate social science research that communicates with the youth as stakeholders, it remains difficult to see the disease through their eyes. It is imperative to speak to these youth on their plane of understanding. Otherwise, all these educational programs, as important as they are, will be for naught.

Underlying Social conditions

The IHS does not adequately examine fundamental risk factors nor address social factors for diabetes among the youth. The IHS may provide good clinical care and access to treatment, but if these factors not addressed, the problem may continue on such a massive scale (13, 14). Although some studies report improvement in diabetes outcomes for several IHS areas, there are many AI/AN individuals that do not have access to IHS health centers (15, 16). Moreover, even those with IHS coverage lack preventive services in comparison to other insured people (15). Overall, AI/AN individuals are also more likely than whites to be uninsured, less educated, under the federal poverty level, and suffer worse health outcomes (15), which may partly explain why they experience higher prevalence of physical inactivity, smoking, and obesity (16). It does little good to educate children, parents, or young adults on nutrition and weight management if they are in environments and situations that are not conducive to healthy lifestyles.

Risk factors such as overweight and lack of breastfeeding hold their own set of societal barriers that IHS must examine and eliminate. Risk factors may be linked to certain aspects of their environment or culture. As Link and Phelan discussed in their study on fundamental causes of disease, there are proximal and distal causes of disease (18) Overweight is a biologic risk factor for disease, but lack of access to nutritious food or space to exercise may increase the risk of overweight in children and represent the true fundamental risk factors (7). Women may want to breastfeed their newborns but may be unable to because of their jobs. These could be considered the fundamental risk factors for Type 2 Diabetes and deserve more social science research.

The IHS as an agency of the Federal Government and its relationship with American Indian and Alaska Native tribes and communities

The IHS does not take a proactive enough approach in fostering a trustworthy relationship with AI/AN tribes and communities. Although the IHS states that part of its mission is to eliminate many health disparities including type 2 diabetes, they fail to see the broader problem at hand. The federal government possesses a long and storied history of continual discrimination against AI/AN populations, and health disparities are simply a manifestation of these actions (20). In order for AI/AN to believe the IHS public health messages and take them to heart, the IHS must maintain a good relationship with these communities. The IHS should realize past abuses and respond to them in a culturally appropriate manner, which it has begun to by delegating more authority to tribal health centers in recent years (15).

Many health and access disparities continue to exist though

the IHS has evolved (1, 21). Because of all the social and health issues that negatively affect AI/AN, it becomes all the more important that the IHS provide them with an outlet to voice their health concerns (1, 3, 5). The US government should continue to fund successful diabetes intervention programs and expand funding for more prevention programs. Consider that the American Diabetes Association estimates that the average cost of diabetes care is over $13,000 per patient, but the IHS per capita expenditure on total personal health care is $2,133 (5). Perhaps the US government should re-frame its view on budget allocations for the IHS as it is currently funded as a congressional appropriation and not an entitlement (22). This means that the IHS receives its funds at the discretion of Congress and its perception of their need.

Implications for the future

The federal government must remind itself of legal obligations towards AI/AN populations and expand funding for IHS and its prevention programs (22). The IHS should encourage and undertake more quantitative and qualitative studies understand the epidemiologic and social reasons for this epidemic, particularly among the youth. It is important to remember that AI/AN represents a classification designed by the federal government, but it includes many tribes and communities that may be affected differently by diseases. There are also variances among communities and tribes that should also be further explored. The data can vary greatly depending on geographic location. As such, any prevention program should be tailored to a group in a culturally appropriate manner. Along with research, more surveillance data is needed. Many studies described prevalence data, but it is important to obtain incidence rates and thus, more precise data for the various age and tribal groups.

The IHS appears to be making an earnest effort to address this disease as well as many others. It is very limited by its funds, but some improvements can be made that would not require budget changes. The aim of this critique is to highlight the IHS programs which can be improved and suggest ways in which they do so. Some IHS programs do work, and they work because they involve all the stakeholders (13, 14). Although it is unlikely to see changes at the federal level, the IHS can implement its own changes at the community level. The IHS need to truly represent the AI/AN and reframe the type 2 diabetes among youth within a broader picture. They need a larger frame.

REFERENCES

1. IHS. Facts on Health Disparities, January 2006.

2. Acton, K. Diabetes Prevention in AI/AN communities: Turning Hope into Reality.
http://www.ihs.gov/FacilitiesServices/AreaOffices/California/UploadedFiles/Diabetes/2002TLDCDMConferenceinDenver.pdf
3. Acton, K., et al. Trends in Diabetes Prevalence among American Indian and Alaska Native Children, Adolescents, and Young Adults. American Journal of Public Health, September 2002; Vol. 92, No. 9: 1485-1490
http://www.ajph.org/cgi/content/abstract/92/9/1485?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=Native+Americans&searchid=1&FIRSTINDEX=0&sortspec=relevance&resourcetype=HWCIT
4. Salazar MK. Comparison of four behavioral theories. AAOHN Journal 1991; 39:128-135.

5. IHS. Diabetes - January 2007.

6. IHS. The Special Diabetes Program for Indians: Facts-at-a Glance.
http://www.ihs.gov/MedicalPrograms/Diabetes/FactSheets/SDPI_FactsAtaGlance_200706.pdf
7. Pathways. Intervention. http://hsc.unm.edu/pathways/intervent/intrvtn.htm

8. UNITY Youth. UNITY Youth help fight childhood obesity!
http://www.unityinc.org/secondary.php?section=18

9. Teufel-Shone, Nicolette I., et al. Community-Based Participatory Research: Conducting a Formative Assessment of Factors that Influence Youth Wellness in the Hualapai Community. American Journal of Public Health, September 2006, Vol 96, No. 9: 1623-1628.

http://www.ajph.org/cgi/content/full/96/9/1623?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&andorexactfulltext=and&searchid=1&FIRSTINDEX=0&sortspec=relevance&volume=96&firstpage=1623&resourcetype=HWCIT

10. IHS. California Area Indian Health Service.
http://www.ihs.gov/FacilitiesServices/AreaOffices/California/Universal/PageMain.cfm?p=424&CalID=647
11. IHS. Primary Prevention Focus Areas: Diabetes.
http://www.ihs.gov/NonMedicalPrograms/HPDP/index.cfm?module=focus&option=diabetes&newquery=1

12. Gahagan, Sheila, et al. Prevention and Treatment of Type 2 Diabetes Mellitus in Children, With Special Emphasis on American Indian and Alaska Native Children. Pediatrics, October 2003; Vol. 112, no. 4: e328-e328

http://pediatrics.aappublications.org/cgi/content/abstract/112/4/e328

13. Wilson, Charlton., et al. Diabetes Outcomes in the Indian Health System During the Era of the Special Diabetes Program for Indians and the Government Performance and Results Act. American Journal of Public Health, September 2005, Vol 95, No. 9: 1518-1522

http://www.ajph.org/cgi/content/full/95/9/1518

14. IHS. Special Diabetes Program for Indians: Improving Diabetes Outcomes for American Indians and Alaska Natives.

http://www.ihs.gov/MedicalPrograms/diabetes/FactSheets/Clinical_Outcomes_Overview_200706.pdf

15. Zuckerman, S., et al. Health service access, use, and insurance coverage among American Indians/Alaska Natives and Whites: what role does the Indian Health Service play? American Journal of Public Health, January 2004; Vol. 94, No. 1: 53-59.
http://www.ajph.org/cgi/content/abstract/94/1/53?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&author1=zuckerman&andorexactfulltext=and&searchid=1&FIRSTINDEX=0&sortspec=relevance&resourcetype=HWCIT
16. Denny, CH., et. al. Disparities in chronic disease risk factors and health status between American Indian/Alaska Native and White elders: findings from a telephone survey, 2001 and 2002. American Journal of Public Health, May 2005; Vol. 95. No. 5: 825-827.
http://www.ajph.org/cgi/content/abstract/95/5/825?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&author1=denny&andorexactfulltext=and&searchid=1&FIRSTINDEX=0&sortspec=relevance&resourcetype=HWCIT

17. Zuckerman, Stephan, et al. Health Services Access, Use and Insurance Coverage Among American/ Indians/Alaska Natives and Whites: What Roles Does the Indian Health Services Play? American Journal of Public Health, January 2004; Vol. 94, no 1: 53-59.

18. Link BG, and Phelan J. Social conditions as fundamental causes of disease. Journal of Health and Social Behavior 1995; 35(extra issue):80-94.

19. IHS. Facts on Health Disparities, January 2006.

20. Lui, Meizhu, et al. The Color of Wealth, 2006.

21. Castor, ML., et al. A nationwide population-based study identifying health disparities between American Indians/Alaska Natives and the general populations living in select urban counties. American Journal of Public Health, August 2006; Vol. 96, No. 8: 1478-1484.
http://www.ajph.org/cgi/content/abstract/96/8/1478?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&author1=castor&andorexactfulltext=and&searchid=1&FIRSTINDEX=0&sortspec=relevance&resourcetype=HWCIT
22. Lillie-Blanton, Marsha , et al. Addressing and Understanding the Health Care Needs of American Indians and Alaska Natives. American Journal of Public Health, May 2005. Vol 95, No. 5: 759-761.

http://www.ajph.org/cgi/content/full/95/5/759