American Indians (AI) have the highest incidence rate of type 2 diabetes (T2D) diagnosis compared to other racial/ethnic minorities in the United States, which has subsequently led to a disproportionate burden of diabetes complications in the population. The genetic, cultural, and shared environmental factors surrounding T2D have often resulted in it being deemed a family disease. The presence of multigenerational and culturally competent interventions that have been constructed and put into practice are sparse, and the content and format likely to be helpful for the AI families unknown The purpose of this study was to systematically interact with rural AI communities to gain a better understanding of the diabetes-related practices, needs, and challenges of AIs with T2D and their families, and the characteristics of interventions they would find most relevant and beneficial
Method:
A total of 7 focus groups were conducted in Florida and with an AI tribe in rural Oklahoma. Focus groups were held in local community centers convenient for most participants. A semi-structured interview guide with open-ended questions was used to acquire data from focus groups ranging from 3 to 13 AI participants with T2D. Participants were referred by staff from HealthStreet, a community engagement program, Consent2Share mechanism, and by tribal diabetes educators. Using a script, we screened participants prior to the focus group to determine study eligibility, which included the participants being: a) self-identified as American Indian; b) told by a health care provider they have T2D; c) 18 years of age or older; d) able to speak and read English; and e) willing to speak about their diabetes in a group setting. The University of Florida IRB and the Tribal IRB approved all procedures.
All focus groups were audio recorded and transcribed verbatim. Descriptive statistics were used to summarize demographic data. A research team member checked the transcripts for accuracy. Then, three independent research team members compared themes and discussed discrepancies found in themes until consensus was reached. Field notes recorded by the first author were also reviewed to support identified themes.
Findings:
There was a total of 62 participants, 77% were female, with a mean age of 55.3 (SD 11.4) years and the mean duration of diabetes diagnosis was 10.4 (SD 9.1) years. Most participants had healthcare coverage (64%) and received their care from Indian Health Services (68%). Participants reported, that in addition to T2D, they had at least one other chronic health condition (40%) or two or more chronic health conditions (32%). In all, 71% of the participants had either a GED, high school diploma, or vocational school. Participants also reported on whether they were financially comfortable (39%), just making ends meet (46%), or unable to make ends meet (15%).
Preliminary findings revealed themes centered around identifying intervention components, the impact of family behaviors on T2D-PM, barriers to T2D-PM, and personal experiences with T2D.
Participants provided feedback on intervention components, noting the preference that monthly sessions be between thirty minutes and two hours. Other focus group participants urged the use of weekly communication and check-ins using mobile devices, in addition to the monthly meetings, stating it would serve as additional support and encouragement. A number of focus group participants expressed a desire for an intervention that included family members because of their concern that family members did not understand the seriousness of T2D and its impact on those who have T2D.
Participants also shared other topics they felt were important to include in the intervention. Many of the topics were directed to family members including educating the family on healthy food choices and struggles of living with T2D including diabetes related complications. Participants also were concerned with alerting family members on how to be supportive. Lastly, participants offered creative ideas for hands on activities they would enjoy and find beneficial as part of the intervention. Participants wanted to “learn as a family” and suggested family type activities such as learning to cook a healthy meal together, friendly competitions to encourage eating healthy, physical activity, and losing weight. Other groups suggested specific physical activities such as chair volleyball, family-oriented games/activities, and traditional dancing.
Another theme identified the impact family support had on preventing and managing T2D. Supportive behaviors were seen as actions such as the entire family eating similar foods as the person with diabetes, keeping healthy foods in the house, and expressing concern for the person living with diabetes without ‘nagging’ or criticizing. Non-supportive behaviors were identified as eating unhealthy foods in front of individuals with T2D, having unhealthy foods in the home and ‘nagging’ the person with T2D on what they should not eat.
Focus group participants also discussed challenges around T2D-PM. Themes emerged around barriers related to medication adherence, healthy eating, and physical activity. Participants discussed three common barriers to medication management which included forgetting to take medication, feeling lazy, and medication side effects. Several groups mentioned barriers to healthy eating practices including limited income, limited access to fresh produce, the low cost and ease of purchasing fast food versus cooking healthy meals, and the lack of healthy food choices at events. Barriers to physical activity included lack of time/motivation, no one to exercise with/lack of support, health concerns, and putting one’s self-last. Overall, most participants acknowledged that lack of time and motivation were major barriers.
The fourth theme identified was the personal experiences of living with T2D. Responses from the participants yielded a spectrum of emotions they felt when first diagnosed with T2D. These emotions ranged from panic, fear, and depression, as well as feelings of self-blame due to failure to take action when first diagnosed with pre-diabetes.
Discussion:
Findings of the AI community’s insights and including the entire family in intervention development may offer a way to improve T2D-PM outcomes for this population. Themes identified in this study will guide development of interventions that are culturally sensitive and tailored to the individual and family. Findings indicate the need for a diabetes program that includes participants’ family members, in contrast to current interventions that mainly focus on the person with diabetes. . In the AI culture, family including extended family, often live together and support and care for each other. Future interventions should not only include family members but should also measure behavioral and biological outcomes for both the person with diabetes and their family members at risk for T2D. A multi-generational T2D-PM intervention may be an effective way to decrease the burden of diabetes diagnosis in this minority population.
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