Abstract
Little research is available about youth with disabilities, who experience numerous inequalities in health outcomes compared with youth without disabilities. Youth with disabilities experience many environmental and attitudinal barriers in maintaining healthy lifestyles, which put them at risk for obesity. Strong evidence has suggested that obesity rates are higher among youth with disabilities than among their nondisabled peers. The purpose of this study was to implement and examine the benefits of a culturally tailored healthy lifestyles program for Latino youth with disabilities and their families. Several cultural adaptations were made to align with the target population’s cultural norms. Seventeen Latino families identified 67 behaviors they wanted to change or new habits they wanted to establish. The postassessment data showed that several family routines improved, and families reported engaging in many of the healthy habits they had identified for themselves. Implications of culturally appropriate and accessible programming are discussed.
The high rate of obesity among youth in the United States has resulted in a call for a variety of disciplines to design, implement, and evaluate innovative community interventions to address this epidemic (Ogden et al., 2006). Approximately 22% of children ages 2–17 yr and 36% of adults are considered obese (Centers for Disease Control and Prevention, 2015). Today more than ever, occupational therapists are likely to provide services to youth who are struggling with or are at risk for obesity (Pizzi, 2013; Pizzi & Vroman, 2013). Moreover, occupational therapists are well suited to address factors contributing to obesity because of their focus on participation as a means to promote health (Forhan, 2008). Occupational therapists, especially those working in community settings and schools, can make an impact on the rate of obesity by designing occupation-focused (Kugel, 2010) and culturally tailored (Suarez-Balcazar, Friesema, & Lukyanova, 2013) interventions in the community, school, or home in collaboration with parents and teachers.
Prevalence of Obesity Among Youth With Disabilities
Historically, researchers have overlooked the health inequalities experienced by people with disabilities. In particular, little research is available on youth and young adults with disabilities, who experience numerous inequalities in health outcomes compared with youth and young adults without disabilities. Youth with disabilities experience many environmental and attitudinal barriers to maintaining a healthy lifestyle, which puts them at risk for obesity and other diseases (Rimmer, Yamaki, Davis, Wang, & Vogel, 2011).
Obesity rates are higher among youth with disabilities than among their nondisabled peers (Rimmer et al., 2011), and youth with developmental and intellectual disabilities have a higher risk for obesity than their peers with physical disabilities (Maïano, 2011). Moreover, the growing literature on health disparities has indicated that Latino and African American youth are at even higher risk—38% higher—than White and Asian youth with and without disabilities (Krueger & Reither, 2015). Efforts to address this complex issue must be differentiated on the basis of the population of concern, especially given the need to provide culturally and linguistically appropriate services to diverse youth (Suarez-Balcazar et al., 2013). Across demographic groups, obesity puts youth at risk for disrupted psychosocial functioning and peer relationships. In addition, obesity limits occupational participation in activities of daily living and instrumental activities of daily living (Cahill & Suarez-Balcazar, 2012; Pizzi & Vroman, 2013).
Barriers and Challenges to Participating in Health Promotion Interventions
Youth with disabilities face limited access to services and may face many barriers to engaging in a healthy lifestyle. Suarez-Balcazar, Agudelo, Mate, and Garcia (in press) conducted a series of focus groups with Latino youths with disabilities and their parents. Participants reported barriers such as accessibility, lack of available programs, lack of trained personnel at recreation centers, challenges with transportation, and high fees for sports and after-school activities. The lack of healthy programming available to youth with disabilities outside of school also contributes to the obesity rate (Yazdani, Yee, & Chung, 2013). Lack of physical activity, poor access to nutritious foods, and lack of opportunities for social participation are also contributing factors. Moreover, environmental barriers contribute to the unhealthy lifestyles that fuel obesity in vulnerable populations. For instance, working-class and low-income communities are saturated with fast-food outlets and convenience stores, and affordable healthy alternatives are scarce (Cahill & Suarez-Balcazar, 2009; Drewnowski & Specter, 2004; Suarez-Balcazar et al., 2006).
Prior Research on Intervention Design to Promote Healthy Lifestyles
Literature on accessible and culturally appropriate health promotion programming for Latino youth with disabilities and their families is sparse (Suarez-Balcazar et al., 2013), but some efforts have been made to address the barriers to healthy lifestyles encountered by children with disabilities. Previous research has shown that customizable interventions are most successful (Rimmer & Rowland, 2008) and that the most effective interventions incorporate physical activity, nutrition education, and behavior management techniques (Whitlock, O’Connor, Williams, Beil, & Lutz, 2010).
Successful interventions for school-age children with developmental disabilities should ideally rely on modeling, scaffolding, self-monitoring, and goal setting (Simpson, Swicegood, & Gaus, 2006). Family education and behavior management have also been effective in combating obesity among children with neurodevelopmental disorders (Irby, Kolbash, Garner-Edwards, & Skelton, 2012). Some research projects have implemented education for parents in their child’s school, and others have targeted staff members working in group homes for children with disabilities (Gephart & Loman, 2013; Hinckson, Dickinson, Water, Sands, & Penman, 2013). This previous research has examined multiple factors that address the needs of certain populations. However, despite evidence of program effectiveness, evidence for culturally adapted interventions for Latino youth with disabilities is scarce. Rimmer et al. (2014) stated that the evidence for the benefits of physical activity and nutrition education in promoting healthy lifestyles is strong, yet many people with disabilities and their families cannot easily access these programs.
Rationale for the Current Study
The aim of this study was to examine the benefits of a culturally relevant health promotion program, Familias Saludables (Healthy Families), to foster engagement in family routines and goal setting that optimize healthy behaviors and routines among Latino youth with disabilities and their families. To accomplish this, we adapted and translated a curriculum called “Health Matters” (Marks, Sisirak, & Heller, 2010). This evidence-based curriculum was developed for adults with developmental disabilities and has three main components: physical activity, nutrition education, and behavior management.
The study was grounded in the Social–Ecological Model, which illustrates the interaction between the person and different systems that influence behavior (Bronfenbrenner, 1999). Such levels of influence include the individual, the family, the community or neighborhood, and societal level. During the nutrition education and behavior management discussions, participants, guided by the principles of this model, discussed strategies to engage in healthy lifestyles while interacting at different levels of influence within their ecological environments, including routines at home and in the community (e.g., school, restaurants, grocery stores, parks, community events). A collaborative approach was used throughout the program (see Suarez-Balcazar, Mirza, & Hansen, 2015). For example, families engaged in their preferred type of physical activity (dancing), chose topics for discussion during the family-centered behavior management component, and prepared the snack of their choice.
Method
Background
The researchers partnered with a community-based agency that served people with developmental and intellectual disabilities located in a predominately Latino neighborhood in a large urban setting. All sessions were implemented at the local agency on Saturdays. Institutional review board approval from the researchers’ university was secured before proceeding with the study.
Research Design
A preassessment–postassessment design with follow-up on goal achievement was used for this study. Assessments of family routines were conducted 2 wk before the program started. Four weeks into the program, families were asked to identify goals related to healthy habits and routines. Postassessments were conducted between 9 and 10 wk after the intervention began, and follow-up on goal achievement was conducted 2 mo after the intervention ended.
Participants
Families with children with disabilities between ages 8 and 22 yr who were receiving services from the local community agency were invited to participate in this intervention. This age range was selected in part because of the agency’s need for programming for this population and the funder’s call for interventions targeting this group. All families identified as Latino, mostly of Mexican descent. Agency staff recruited families by circulating recruitment fliers in both English and Spanish.
Seventeen families participated in the program. Fifteen families had 1 child with disabilities, and 2 families each had 2 boys with autism spectrum disorder (ASD), for a total of 19 youths with disabilities (13 boys and 6 girls). Ten boys were between ages 8 and 17 yr, and 3 were between ages 18 and 21 yr. Four girls were between ages 12 and 17 yr, and 2 girls were between ages 18 and 21 yr. Participating children had ASD, Down syndrome, or intellectual disabilities. All youths attended sessions with at least 1 parent, and 4 families consistently brought younger children to the sessions.
Procedure
Participants were screened for inclusion criteria either on the phone or at the first information session. Agency staff scheduled some families to attend the information session if they expressed interest; others called the number on the flyer to learn about the study over the phone. On the basis of the study criteria, families needed to have a child between ages 8 and 22 yr with any disability, and at least 1 family member was required to attend all sessions. A variety of measures were used during the first information session, including a questionnaire on family rules and routines and a goal-setting scale. Families were scheduled at intervals to attend an introduction to the program at the local agency and consent to participate in the study. All measures were administered at the introductory session using standard instructions and a written protocol. Families were asked to bring their child with disabilities to the introductory session.
Once all assessments were completed, two consecutive 8-wk interventions were offered for a total of 16 wk. Consecutive interventions were scheduled to accommodate families who missed sessions because of schedule conflicts such as activities of their nondisabled children. More than 60% of the families attended 12 or 13 sessions, and the other families completed a minimum of 9 sessions. Families who missed a session were encouraged to make up the missed session when it was offered during the next intervention. Participants met once a week for 2 hr at the local agency. The facility was equipped with a kitchen and a large lounge room that allowed for dancing and physical activity. All sessions were delivered in Spanish, and five occupational therapy students, one nutrition graduate student, and two undergraduate honors college students assisted in the implementation of the intervention.
The intervention consisted of 1 hr of physical activity. At the participants’ request, this component evolved into a Latin dance session. Snack preparation, which took place after the dance session, was designed to provide health education through hands-on activities. Each session culminated with a discussion of family routines in the home and community, habits, and goal setting and a discussion of how to navigate community and environmental barriers. Parents and children brainstormed ideas on how to handle community-level challenges and barriers to making healthy lifestyle choices. Each session focused on specific learning objectives, theme or area, and snack preparation.
Instruments
To examine the benefits of the intervention for family routines and goal achievement, we used a goal-setting form adapted from the Health Matters curriculum by Marks et al. (2010) and Kiresuk and Sherman’s (1968) Goal Attainment Scaling. These measures have been used in similar studies (see Balcazar & Keys, 2014). To assess family routines, an 18-question survey about family rules and routines was used (Kerr et al., 2008).
Cultural Adaptations
The traditional goal-setting and behavior management approach often used in health promotion programs (Kiresuk, Smith, & Cardillo, 1994) was adapted for this study. Traditional goal-setting concepts are rooted in Western values of self-control, independence, empowerment, and control (Riger, 1993), but working-class Mexican immigrants may not necessarily have a history of taking control of their lives and making decisions for themselves and are more likely to value collectivism, familism, and family values (Marín, 1993). Consequently, when concepts of behavior (self-) management and goal setting related to health routines were introduced, participants had a difficult time grasping the task. To address this, a traffic light terminology and visual aids were used to promote participant engagement. This system helped families identify new healthy habits they wanted to start (green light; e.g., drink a minimum of four glasses of water daily) and continue (yellow light; e.g., continue to walk kids to school) and unhealthy habits they wanted to decrease or stop (red light; e.g., stop drinking a soda every day). Once these concepts were introduced, participants quickly engaged in the activity.
After the fourth session, during the last 15 min of the 2-hr session, each family met with one of the researchers to identify habits using the traffic light activity and engaged in action planning, brainstorming, and problem solving to develop a specific plan of action. Researchers kept track of goals on a goal-tracking form and checked with participants weekly on the status of their progress toward achieving their goals and new routines. The use of culturally specific food was another cultural consideration made during the intervention. For instance, participants prepared simple dishes and snacks, including different types of beans, mango, tortillas, vegetables, and a variety of low-fat Mexican cheeses. There were generational differences in terms of preferred language; parents preferred to speak in Spanish, and some of the older teenagers spoke English. Each family received a $10 stipend for every session they attended to help cover transportation expenses.
Disability-Related Adaptations
Several steps were taken to actively involve the young people with disabilities in the healthy lifestyles intervention. First, the 60-min dance activity was divided into warm-up, breathing exercises, Latin dancing, and cool-down segments. During the dance component, the youths were encouraged to choose their own music and lead dance sessions. The participants showed significant enthusiasm when participating, leading, and making choices during the dance component of the intervention. For example, several youths who had limited expressive language used music to express themselves. Second, youths played an important role in preparing healthy snacks. Youth participants had the opportunity to choose their preferred activity, such as washing fruit, cutting vegetables, setting up paper goods and trays, and preparing snacks. Occupational therapy students assisted youth participants with these tasks when support was needed.
The researchers developed a protocol on how to keep youths with severe disabilities engaged while parents participated in the goal-setting and behavior management small-group discussions. Youths with disabilities could choose to be part of the discussion or work at a crafts table managed by occupational therapy students. The craft projects focused on the theme (type of food, physical activity, or family routine) of the week. Researchers also encouraged parents to ask their children with disabilities what habits or behaviors they wanted to focus on for each session. When appropriate, visual aids were used to help youths choose goals they wanted their families to address. This type of engagement was done through verbal and nonverbal cues and, in some cases, using visual color prompts of photos of children engaged in different types of physical activity, a variety of fruits and vegetables, and Latino families engaged in recreational and leisure activities together. The focus of the intervention was not on the barriers presented by the disability because youths and parents chose preferred activities. The researchers used visual aids and prompts to enable participation in activities created to optimize health. All hands-on activities were made accessible to all participants regardless of disability.
Results
Family Routines and Rules
Data on family routines are presented here for 17 families who completed pre- and postassessments and followed up on goal achievement. Figure 1 shows that at postassessment more families had implemented the rule or routine specified. The largest difference between pre- and postassessment was shown for the following items: no watching TV or DVDs before homework, no use of computer before homework, no dessert until plate is cleaned, and child must help with meal preparation (see Figure 1).
Preintervention and postintervention family routines and habits at home (N = 17).
The family routines survey included a question regarding the daily average time spent watching TV, which was a behavior of particular interest to parents. Families were asked to indicate how many hours and minutes they or their children spent watching TV on a regular weekday. Pre- and postassessment data showed changes in this behavior. The average time spent watching TV for all 17 families went from 120 min/day at preassessment to 95 min/day at 10-wk postassessment.
Data on Setting Goals
Seventeen families identified a total of 67 goals: 25% (17) of the goals were about physical activity; 35% (23) were about nutrition and healthy diets; and 40% (27) were about family routines, rules at home, and leisure activities. Families identified an average of 3.9 goals or habits to address. Goal data showed that 28% (19) of goals were achieved as expected; 9% (6) exceeded expectations; and 63% (42) were in progress. Examples of the most frequently identified goals are listed in Table 1.
Sample of Habits and Behaviors Related to Rules and Routines to Engage in Healthy Lifestyles
Despite families’ efforts to work toward their goals, they experienced challenges in making progress. Some of the reported challenges included (1) lack of time to prepare meals as a result of working evening and weekend shifts; (2) difficulties helping youths with disabilities change routines and adjust to a new set of rules at home; (3) lack of space at home to engage in dancing or another form of meaningful physical or recreational activity; (4) attitudes from other family members, including extended family, regarding overprotecting youths with disabilities; (5) dealing with the disruptive behaviors of the child with disabilities while grocery shopping or on family outings; (6) using food as a way to control behavior; and (7) negative attitudes from others when youths with disabilities participate in community activities.
Families also identified broader concerns that hindered their efforts to engage in healthy lifestyle choices, including safety concerns that limited outdoor activities in their community, difficulty finding activities in the community that welcomed youth with disabilities, and lack of opportunities in the community in which the whole family could participate together. All families reported that this program was the only opportunity they had available to them as a family.
Overall, the parents were excited to report progress toward their goals. Parents often engaged in problem solving among themselves to address challenges they experienced. Some parents volunteered to support each other’s goals by offering assistance. For example, parents offered to go for walks together, form a dance group, or watch each other’s children while going grocery shopping. No differences in the number of goals, goal achievement, or family routines were found between families who attended 12 or 13 sessions versus 9 sessions.
Families’ Views of the Program
In an open session, families were asked to discuss the overall benefits of the program, specific aspects of the health promotion program they liked, and challenges they experienced. Families indicated that the problem-solving and action-planning discussions were helpful, in part because they supported each other to take action to optimize the health of their families and had the opportunity to share ideas with other parents. Parents reported satisfaction with the program being family centered and that the family inclusiveness invited learning and enjoyment as a family unit. High levels of satisfaction with the dance and hands-on activities were reported by both parents and youths. Additionally, parents expressed satisfaction that their children with disabilities were eager to attend the sessions. Youths with disabilities also expressed a high level of satisfaction with the program.
Families also made reference to experiencing the most challenges in improving the diet of their child with disabilities and challenges in engaging their child in meaningful leisure and recreational activities. Some parents thought that other adults—teachers and relatives—contributed to using food as a way to manage challenging behaviors of their children with disabilities. Moreover, a few parents shared experiences in which they had been denied participation in community recreational activities because of their child’s disability. Participants reported that their communities did not offer family-oriented, accessible, and affordable health and recreational programming for them.
Discussion
This study identified benefits of a culturally tailored health promotion intervention for goal setting, goal achievement, and changes in family. Families made changes in their daily routines. The largest observed changes were in youths helping with meal preparation and not being allowed to watch TV before doing homework. The goal-setting data indicated that families identified a variety of goals, yet reported achieving only 37% of those goals 2 mo after setting them. Families identified an average of 3.9 goals, and all families reported achieving at least 1 goal and continuing to work on other goals. These goal-setting data are consistent with those of other studies that have used this strategy for self-management in health promotion (Pearson, 2012; Shilts, Horowitz, & Townsend, 2004).
The evidence indicates that changing behavior is complex; time and effort are required to manage a number of personal factors (Booth et al., 2001). Furthermore, consistent with the Social–Ecological Model introduced earlier, many obstacles to health promotion involve environmental factors (Yazdani et al., 2013). Changing habits and routines is also related to the level of volition, habituation, performance capacity, and environmental influences, as stated by Kielhofner (2008). Parents’ views on barriers in their communities were consistent with existing literature indicating that accessibility, attitudes of others, and lack of trained staff are challenges to engaging in physical activity for youth with disabilities and their families (Rimmer et al., 2011).
Limitations and Future Research
Despite the benefits of the intervention for family routines and goal setting, the results should be interpreted with caution. The small sample size and lack of comparison group were both limitations of this study. Moreover, sustainability and long-term benefits of the program were not captured in this study and need to be further investigated. However, implementing a culturally tailored program seems to yield promising results. Ongoing research is needed to investigate the impact of similar programs on obesity prevention and health promotion for youth with disabilities and their families.
In addition, future research should examine family empowerment. The investigators detected some indicators of empowerment among mothers and youths. In particular, 2 mothers who led dance sessions often took a leadership role in helping to deliver the intervention, as did 2 youths with disabilities who led dance sessions and hands-on activities on multiple occasions. Currently, the research team is training 1 mother to become a dance instructor for a subsequent cohort. On the basis of this project, an occupation-focused dance curriculum grounded in the Model of Human Occupation was developed (Agudelo, 2015). The current project received an additional year of funding from the Chicago Community Trust to replicate the study and create capacity at the community agency and among study participants to sustain the intervention over time.
Implications for Occupational Therapy Practice
An important aspect of this project was the emphasis on cultural adaptations. Health promotion programming needs to be culturally tailored to the community of interest (Marín, 1993; Suarez-Balcazar et al., 2013). When working with Latino families on health promotion programs practitioners should consider the following recommendations based on the current study:
Practitioners should consider partnering with bilingual staff and other professionals to deliver the intervention in Spanish and/or bilingually, given that younger generations might prefer English whereas parents might prefer Spanish. In this project, all sessions were conducted in Spanish.
Practitioners are encouraged to work collaboratively with parents to choose health promotion activities that are important to them. For instance, many Latinos prefer dancing as a type of physical activity. Dancing is a strong part of the Latino culture (Marquez, Bustamante, Aguiñaga, & Hernandez, 2015).
Practitioners need to be aware of cultural preferences in foods, games, and ways of interacting and delivering information to working-class Latino immigrant families. This awareness was imperative to the success of this intervention. For instance, occupational therapists played a critical role in creating interactive, hands-on sessions. Slide presentations with handouts requiring extensive writing and reading would have been inaccessible for this population. Interventions must be matched to the cultural norms and literacy levels of the target group (Mier, Ory, & Medina, 2010; Suarez-Balcazar et al., 2013) to optimize effectiveness and participants’ satisfaction.
Practitioners also need to engage with diverse communities to tailor interventions to meet their needs by listening to views and concerns of families and youth with disabilities from minority backgrounds. More research is needed on strategies to make culturally relevant interventions sustainable in the community. Occupational therapy practitioners designing occupation-focused interventions to prevent obesity and promote health among minority youth with disabilities need to consider the cultural values of the child and use a family-centered approach to implementation. Practitioners should consider discussing potential adaptations with families and youth with disabilities as well as with paraprofessionals and agency staff who have experience working with Latino families and youth with disabilities.
Footnotes
Acknowledgments
This project was funded by a grant from the Chicago Community Trust to the University of Illinois at Chicago Department of Occupational Therapy. We are grateful to all the families who participated in this study and to our community partner, El Valor Corporation, whose staff helped in the implementation of the intervention. We are also grateful to Joanna Keel for her feedback on a draft of this article.