JMIR Publications

ABSTRACT

Background:

Introduction: The rise in pediatric obesity and its accompanying condition, type 2 diabetes, is a serious public health concern. Type 2 diabetes (T2D) in adolescents is associated with poor health outcomes and decreased life expectancy. Effective diabetes prevention strategies for adolescents, at high risk for T2D, and their families are urgently needed.

Methods:

We partnered with at-risk adolescents, their families, community members and health professionals to conduct a series of human-centered design (HCD) research sessions to 1) better understand environmental factors that dissuade/encourage recommended lifestyle changes to decrease T2D risk 2) elucidate desired program characteristics and 3) improve activation in diabetes prevention programming.

Results:

We found that lack of financial resources, limited access to healthy foods, safe places for physical activity and competing priorities pose barriers to adopting lifestyle changes. Adolescents and their families desire interactive, hands-on learning experiences that incorporate a sense of fun, play and community. Discussion: We describe the use of HCD methodologies used to engage adolescents, parents, community members and health professionals in the design of a diabetes prevention group.

Objective:

Overweight and obesity in youth continues to be a serious public health concern 1, especially as both conditions are risk factors for the development of type 2 diabetes (T2D), and its precursor condition, prediabetes 2. T2D in youth increased 30.5% from 2001 to 2009 3 and is predicted to increase four-fold from 2010 to 2050 4 with minority youth of low socioeconomic status (SES) being disproportionally affected 5,6. This is disconcerting as early onset of T2D and poor glycemic control is linked to higher risk of diabetes-related complications and decreased life expectancy 7. Findings from the Treatment Options for Type 2 Diabetes (TODAY) study and the Restoring Insulin Secretion (RISE) Pediatric Medication Study illustrate the aggressive nature of T2D in youth and assert the urgent need for efficacious diabetes prevention strategies for at risk youth 8,9. Significant progress has been made in regards to diabetes prevention for adults 10-17, but less is known about effective strategies for adolescents and their families. Studies such as the Bright Bodies Healthy Lifestyle program and the ENCOURAGE Healthy Families study show promising outcomes for lifestyle interventions to modify risk factors for developing T2D in adolescents 18,19. However, behavior modification for adolescents is complex: caregivers and family dynamics play a pivotal role in facilitating change in the home environment, as well as, shaping attitudes and beliefs about food choices and physical activity 20-26. Additional factors such as low socioeconomic status (SES), limited access to healthy food choices and physical activity and individual desire to participate pose further barriers to lifestyle change in high risk adolescents 27-33. These complexities make it especially important to solicit the expertise of adolescents and their families when considering strategies for prevention 34. Human-centered design (HCD) is a problem-solving method that engages stakeholders in the process of development and implementation of solutions 35. HCD may be a promising approach for chronic disease prevention 36, yet there is a lack of studies that describe HCD methodologies applied for health 37. We engaged at risk adolescents, their parents, community members and health professionals in a series of HCD research sessions to 1) better understand environmental factors that dissuade/encourage recommended lifestyle changes to decrease T2D risk, 2) elucidate desired program characteristics and 3) improve recruitment to and activation in diabetes prevention programing. This paper describes the HCD methodologies and the findings that resulted from this collaborative effort.

Methods:

We convened a community and health professional advisory board consisting of stakeholders who serve adolescents at high risk for T2D and their families. Examples include diabetes educators, nurses, translational science researchers, school personnel, a firefighter, a pastor, youth counselor and other community members. The community and health professional advisory board participated in one research session and were compensated with $50 per hour for their time. The community and health professional advisory board assisted in the recruitment of at-risk adolescents and a parent or family support person. The inclusion criteria for youth were : 1) between the ages of 10 and 17; 2) overweight (BMI ≥85th percentile for age and gender, weight for height ≥85th percentile or weight ≥ 120% of 50th percentile for height); 3) with two additional risk factors for T2D (diagnosis of prediabetes, family history of T2D in first-or second-degree relatives, belong to racial/ethnic minority group of high risk, have conditions associated with insulin resistance, have had gestational diabetes or exposure to gestational diabetes in utero); and 4) a parent or family support person willing to participate in the family session. Three family-centered research sessions were offered and families took part in 1-2 of these sessions. Additionally, an adolescent-only group was recruited for one session. Participants were compensated with $20 per hour of their time. A total of five research sessions took place from February to August 2016. Forty-two youth, 21 parents and 14 community members/health professionals participated in the sessions. The Indiana University Institutional Review Board approved this study (1510313617) and participants completed a written informed consent prior to engaging in any research activities. We collaborated with Research Jam (RJ), the Indiana Clinical and Translational Sciences Institute Patient Engagement Core, to develop and facilitate the research sessions. RJ utilizes methods from the field of HCD to partner with investigators and participants in the creation of innovative, stakeholder-centered research. This partnership combines rigorous scientific inquiry with a keen focus on the “person-side” of health behaviors 38. RJ design professionals created HCD research activities to address the following questions (Table 1): 1) What environmental factors inhibit/promote adolescents and their families in adopting recommended lifestyle changes to reduce T2D risk? 2) What are the ideal characteristics of a diabetes prevention program for adolescents and their families? 3) What are effective strategies to engage adolescents and their families in diabetes prevention programming? 1. Environmental modifications to improve lifestyle change efforts Two activities were designed to extract information about environmental modifications to improve lifestyle change efforts. During family-centered research sessions, healthy behaviors that are typically recommended to reduce risk for T2D (i.e. avoid sugary drinks, eat more fruits and vegetables, increase physical activity, use portion control, decrease junk foods) were presented to the group on posters. Adolescents and their parents were asked to consider each behavior and write down perceived barriers on post-it notes. Adolescents and parents then placed barriers on corresponding posters. The facilitator read each barrier aloud to the group to promote further discussion and understanding. Community members and health professionals engaged in a similar activity to elucidate environmental barriers. They were first asked to identify outcome or goal “they wished families would gain from participating in a diabetes prevention program.” They then worked in small groups to consider barriers on different levels of the socioecological framework that prevent adolescents and their families from achieving this outcome or goal. 2. Ideal program characteristics RJ human-centered designers used several strategies to ascertain information regarding ideal program characteristics (Table 1). For instance, the “all the time, never again” icebreaker activity asked adolescents and parents to share what they wished they could do all the time and what they wished they never had to do again. This provided the research team with insights on activities that should be included or avoided in program design. Participant responses to this icebreaker were used in subsequent activities during the sessions. In another activity to identify ideal program characteristics, participants brainstormed strategies to overcome the previously identified barriers to healthy behaviors (Image 1). They were then instructed to consider how their solutions could resemble the “all the time” activities that were verbalized during the icebreaker activity. These ideas were written on post-it notes and added to the poster for each healthy behavior. Drawing was another approach to reveal desired program components. Drawing is a make method that can help elicit tacit knowledge, or what people know, feel, or dream, but which “can’t be readily expressed in words” 39. One activity instructed small groups of participants to draw the “worst diabetes prevention program ever” (Image 2). This was followed by instructions to draw the “best program ever” keeping in mind the “all the time” activities verbalized during the icebreaker. The goal of this activity was to elicit insights into what adolescents, parents and community and health professionals desire in a program. The diabetes prevention party activity was similar to best program ever activity but was framed slightly differently (Image 3). For this activity, small groups of adolescents were instructed to draw their idea for the “best party ever.” After 10 minutes groups were assigned two healthy behaviors and were asked to adapt their party in such a way that would motivate guests to adopt the healthy behaviors. Groups then presented their drawings and discussed how they incorporated the healthy behaviors. 3. Engagement and activation in diabetes prevention programming RJ first explored participants’ knowledge of diabetes risk by asking adolescents and parents to write three things that increases risk for T2D. This information was used to assess knowledge and ensure program relevance for potential participants. The cartoon conversation activity was used with adolescents to better understand the types of messages that adolescents receive from adults regarding decreasing risk for T2D and explore how they feel about these messages (Image 4). This activity is a form of a probe in which participants are given a pre-designed situation to elicit a response from participants 40. In this case, the adolescents were given a worksheet that featured a cartoon drawing of an adult and an adolescent and asked to recall a conversation when an adult talked to them about a healthy behavior. They wrote the adult’s comments in the word bubble and then captured their own verbal response in the adolescent speech bubble as well as their thoughts or feelings in the adolescent thought bubble. The program pitch activity instructed parents and adolescents to convince the person sitting next to them to attend their ideal diabetes prevention program. This technique is a form of participatory envisioning and enacting 41 which asks participants to act out or pretend in order to both understand and generate ideal messaging for a diabetes prevention program. As the activity progressed, participants were given limitations on the types of words that could be used (i.e. convince your neighbor without using the word “health” or “diabetes prevention”). This activity elicited messages that adolescents and parents would use to implore others to engage in a diabetes prevention program. The RJ team assimilated participant responses, content from activities and observations during research sessions and thematically coded the data to identify common themes (for example, common barriers to lifestyle changes). In addition, the team utilized the Activity, Environment, Interaction, Object and User (AEIOU) framework to structure the components of the ideal diabetes prevention program according to the participants. Developed by human-centered design practitioners based on ethnography traditions, the AEIOU framework organizes data into Activities (goal-directed sets of actions), Environments (the arena in which activities take place), Interactions (interplays between people or objects), Objects (key elements that make up the environment or with which people may interact) or Users (people active in the environment) categories 42. Content was then further grouped into themes within each category. Information gathered from each population (adolescent, parent, community member/professional) was analyzed separately for comparison.

Results:

1. Barriers to lifestyle change efforts Adolescents and parents were very aware of the barriers they face in adopting and/or maintaining recommended behaviors to reduce risk for T2D (Image 1). Emotional, financial, personal and environmental factors contribute to difficulties following recommended behaviors. Adolescents, parents, community members and health professionals all identified lack of access to resources such as reliable transportation, access to healthy foods and safe places for physical activity as a major barrier. Adolescents specifically verbalized that food choices are often limited by the options offered by parents, schools and vending machines. As one adolescent described, “If you go to the vending machine, everything has some sort of sugar or fat in it. There aren’t really options for healthy stuff.” Limited financial resources also present barriers to adopting healthier lifestyle changes. The cost associated with healthy foods compared to processed foods was implicated to be a significant barrier. Another barrier related to limited financial resources was the need to not waste food (“clean plate mentality”) and the desire to take advantage of opportunities to get more food for less money (buffets, free refills), both notions incongruous with portion control. Families also felt that the time required to cook healthy meals and incorporate physical activity was a luxury not afforded to them. As one parent explained, “When they don’t get home and mom doesn’t get home until late, then it’s like, ‘Okay throw a pizza in.’” All participant groups identified competing priorities as a barrier. The demands of work and school, as well as, stressors such as financial strain and unsafe neighborhoods made healthy lifestyle change a lower priority than imminent needs. Adolescents felt that the amount of time spent sitting during the school day coupled with required homework time in the evening impeded efforts to increase physical activity. Parents’ comments regarding the workday and challenges incorporating physical activity mirrored the adolescents’ sentiments on this topic. Additionally, parents verbalized safety concerns that limit outdoor play for youth. One parent described how different her childhood was to that of her children, “Even though I tried, my kids’ life is so much different from the way I was raised. Some of it was because I was afraid to send them out to play—but I was out and my mom didn’t know where I was most of the day…I would ride my bike 2 or 3 miles from home. That’s just not my kids’ existence. They’ve never had that.” Adolescents and parents described foods and beverages high in sugar and/or salt as having an addictive quality, thus making attempts to decrease these foods especially difficult. As one parent stated, “I’m trying desperately to find things that taste good and are healthy.” They also felt that situations where others continued to eat those foods in their presence hindered their efforts. Adolescents specifically called out celebrations, which so often center around unhealthy foods, as problematic for maintaining healthy eating habits. 2. Ideal program characteristics 2.1 Activity (Figure 1) Adolescents, parents and community and health professionals identified “play” as an important factor in an ideal program. Adolescents expressed play as participation in sports and free movement activities (basketball, swimming, volleyball, dancing). Parents identified play as hands-on learning activities such as cooking classes, recipe sharing and exercises not available at home. The idea of novelty and the desire to try new things was a major theme throughout the sessions. Adolescents and parents felt that trying new foods and activities was an important part of adopting healthy behaviors that fit their lifestyle. Adolescents were interested in trying activities that were out of the ordinary or taking ordinary things and experiencing them in novel ways. For instance, adolescents created a drinkable swimming pool as a component of the diabetes prevention party (Image 3). This idea represents a new spin on the recommendation to drink water instead of sugary drinks. Novelty may be an important tool to make healthy behaviors more interesting and create lasting positive associations with healthy behaviors. All participant groups were averse to didactic, lecture-style sessions. For instance, the worst program ever drawings included an instructor in front of a class saying “blah, blah, blah” and a participant saying “May I speak now?” (Image 2). Participants wanted hands-on, collaborative and motivating learning experiences. 2.2 Environment (Figure 2) A fun environment was the primary focus of youth, parents, community members and health professionals. Creating an environment where healthy choices are acceptable and appealing was important to adolescents and professionals. As one professional put it, “What they would actually want to do not what they feel like they’re supposed to do or have to do, but that the healthy choice is like the awesome choice.” The key challenge is to make healthy choices intrinsically motivating because they are fun, because they align with important values or because they are part of someone’s identity. If healthy choices are seen as obligatory, boring/uncool or unenjoyable, they are less likely to be adopted. It was also important to adolescents and community/health professionals that the program was affirming and not judgmental. This was of particular concern to adolescents. Additionally, groups wanted the program to avoid focusing on what not to do. This was best illustrated with the cupcakes on the table with a sign reading “do not eat” (Image 2). 2.3 Interaction (Figure 3) Adolescents, parents and professionals saw value in friendships and personal relationships as part of the program. All participants identified personal relationships as vital to the success of their program or party. One adolescent explained, “I think you get to know the people that you’re going to be doing the class with it’s a lot easier. So if you do some sort of like fun, game or activity at the beginning and people get to know each other pretty well, it’s much easier to have a good time.” The ability to collaborate was also important in their representations. Interactive, collaborative hands-on activities were mentioned as important to both adolescents and parents. They wanted to learn through activities like play, cooking and socializing rather than just sitting and listening to a lecture or reading materials. As one parent stated, “I want to know how to cook the way my mother cooked but substitute things that are healthier, so I can still get the foods that I like.” Adolescents wanted a facilitator who incorporates fun. Parents desired a facilitator that the adolescents can look up to. All participants wanted program staff who were fun, engaging and respectful. 2.3 Object (Figure 4) Adolescents, parents and community members saw value in rewarding success. Adolescents verbalized money or access to an experience as motivating rewards. For instance, in one of the diabetes prevention party drawings adolescents envisioned a reward where trying healthy behaviors gained them access to “the real party” (Image 3). Parents verbalized rewards like gym memberships while community members and health professionals thought that free or discounted food or cooking equipment were good incentives. A central focus for all participants was the inclusion of delicious, healthy foods to try. All participants wanted to avoid homework and handouts. 3. Engagement and activation in diabetes prevention programming Adolescents and families were knowledgeable about common diabetes risk factors. Participants felt that it was important to tailor the message to each audience and to incorporate the “cool factor” for adolescents. All groups thought it is was important to use rewards that promote healthy behaviors and celebrate success.

Conclusions:

There is a need for efficacious diabetes prevention interventions for adolescents, at high risk for T2D, and their families. We assembled a diverse group of stakeholders, applied methods from HCD research and conducted community/family-focused sessions to better understand barriers and needed environmental changes to support adolescents and their families, improve diabetes prevention program design and optimize participant engagement and activation in such programming. We then collated our findings to reveal universally expressed ideas from different groups of stakeholders. We found that a lack of financial resources, limited access to healthy foods and safe places for physical activity and competing priorities were identified as significant barriers to adopting and maintaining lifestyle changes. This is consistent with the findings that adolescents of low SES have lower quality diets and lower levels of physical activity than their high SES counterparts 30. These findings assert the need to cultivate health promoting environments, especially those surrounding adolescents, which provide nutritious foods and incorporate physical activity while limiting access to unhealthy foods and sedentary behaviors. Adolescents are often in situations where they have limited influence over food choices. Organizations that serve adolescents should capitalize on opportunities to solicit adolescent input in the selection of appealing, healthy food options and incorporate physical activity into programming. We found that participants want interactive, hands-on learning sessions that incorporate a sense of fun, play and community. Adolescents and their parents desire opportunities to try new behaviors in a supportive group environment and to work towards healthy incentives and rewards. Stakeholders are averse to “one-size fits all” lecture-style sessions that focus on “what not to do,” recommending that the focus be kept on what they had interest in doing. Traditional pediatric weight management approaches utilized to decrease T2D risk focus on evidenced-based lifestyle changes to promote a healthy weight 43. While evidenced-based messaging is key, program design is not typically informed by adolescents, their families and the community which may contribute to poor outcomes and/or attrition 44-47. Our study addresses this gap in the literature by describing HCD methods to elicite patient, family, community and health professional perspectives to better understand barriers, design diabetes prevention programing and activate adolescents and their families. While there is a paucity of literature on the use of HCD for health interventions with adolescents, the use of community-based participatory research (CBPR) has been shown to be feasible and effective with adolescents in the design of health interventions 48-53. For instance, MacDonald et al. used arts-based methods to engage adolescents in the process of designing of sexual health curriculum and concluded that partnering with adolescents improved prevention resources to reflect issues of relevance and potential solutions 53. Unfortunately, the inclusion of adolescents in the design of prevention messaging and curriculum is often neglected 34,53,54, thus leaving an important resource untapped. We engaged, not only, adolescents, but also parents, community members and health professionals in the design of a diabetes prevention program that they would want to utilize. Limitations Adolescent and parent participants were recruited in-part by community and health professional stakeholders and some participants were currently attending a family-based wellness program. This recruitment strategy may have attracted participants that were more activated to make lifestyle changes. Additionally, stakeholders were a relatively small sample size and their perspectives may not be representative of the larger population. However, we plan to further translate our findings into a curriculum and test its effectiveness in a larger sample size. Despite these limitations, our findings bring to light important insights regarding diabetes prevention and lifestyle change from a variety of different stakeholders. It further demonstrates that adolescents and families can effectively co-design diabetes prevention programming while taking into account the perspectives of community members and health professionals.