Journal of Policy and Practice in Intellectual Disabilities Volume 7 Number 2 pp 119–129 June 2010
Evaluation of Community-Based Health Promotion Programs for Special Olympics Athletes jppi_258
119..129
Beth Marks, Jasmina Sisirak, Tamar Heller, and Mark Wagner University of Illinois at Chicago, Chicago, IL, USA
Abstract Health screenings conducted during Special Olympics competitions and games have consistently shown that a significant number of athletes with intellectual disabilities (IDs) were overweight or obese, and surveys have indicated that athletes need more fitness training than they receive from their sport practices. In 2002, Special Olympics initiated five community-based health promotion pilot projects for athletes. The projects lasted multiple weeks across the U.S. and were aimed at improving physical fitness and lifestyle behaviors. This study reports on an evaluation of the program and on predictors of program success. The subjects included 56 athletes with ID who participated in these five programs. Data were drawn from interviews with the participants and 54 coaches, residential staff, and parents at baseline and after program completion, along with data from five program directors after program completion. Qualitative and quantitative findings were presented for the following areas: psychosocial and physical health status, physical and nutrition cognitions and supports, and health behaviors among the athletes; program satisfaction among coaches and athletes; and process and structural variables associated with implementation of the programs. Positive psychosocial and health benefits included improved perceived health, reduced body weight, increased fiber intake, improved self-confidence, more positive attitudes toward exercise, and decreased barriers to exercising. Several themes emerged related to implementing health promotion programs, such as obtaining “buy-in” from athletes, coaches, family members, and carers to ensure ongoing support; implementing structured recruitment strategies; formalizing existing relationships; and identifying and incorporating time, money, and transportation constraints and assessment protocols into the program design. Results support the need to broaden health promotion programs to more community-based settings. Keywords: fitness, health literacy, health promotion, intellectual disabilities, nutrition
INTRODUCTION Individuals with intellectual disabilities (ID) residing in community settings have elevated risk factors for number of diseases. Specifically, the prevalence of elevated cardiovascular disease (CVD) risk factors and obesity, and the overall mortality in adults with ID is greater than found in the prevalence among sameage adults in the general population (Beange, McElduff, & Baker, 1995; Harris, Rosenberg, Jangda, O’Brien, & Gallagher, 2003; Jansen, Krol, Groothoff, & Post, 2004; Melville et al., 2006; Rimmer & Yamaki, 2006; Yamaki, 2005). Adults with mild to moderate IDs residing in community settings have the highest risk for CVD of all adults with developmental disabilities (Fernhall et al., 1996; Rimmer, Braddock, & Fujiura, 1994; Rimmer, Braddock, & Marks, 1995). CVD is one of the most common causes of death among adults with ID (Janicki, Dalton, Received May 14, 2009; accepted February 3, 2010 Correspondence: Beth Marks, Rehabilitation Research Training Center on Aging with Developmental Disabilities, Department of Disability and Human Development, University of Illinois at Chicago, 1640 W. Roosevelt Road, Chicago, IL 60608, USA. Tel: +1 312 413 4097; E-mail:
[email protected]
Henderson, & Davidson, 1999), and the onset of CVD is strongly associated with health-related behaviors––specifically lack of physical activity and poor nutrition. While focus on community-based support of adults with ID has allowed greater freedom of personal choice, evidence suggests that many adults have adopted unhealthy dietary habits and a sedentary lifestyle. In studies conducted in the U.S., 93% of adults with ID consumed a high-fat diet, and some 66% of adults with ID did not consume enough fruits and vegetables (Draheim, Williams, & McCubbin, 2002a; 2002b; Rimmer et al., 1994; 1995; Sisirak, Marks, Heller, & Riley, 2007; Sisirak, Marks, Riley, & Heller, 2008). These findings suggest a need to develop, implement, and evaluate targeted health promotion programs for adults with ID. SPECIAL OLYMPICS (SO) SPORTS TRAINING SO is an international program of year-round sports training and competition for persons with ID. It began in 1968 when Eunice Kennedy Shriver organized the First International Summer Games at Soldier Field in Chicago, IL, based on the Olympic tradition and spirit. While its original orientation was
© 2010 International Association for the Scientific Study of Intellectual Disabilities and Wiley Periodicals, Inc.
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toward training and physical conditioning paralleling the standards and goals used by the President’s Council on Physical Fitness (U.S. Department of Health and Human Services, 2008), over time, fitness and conditioning were incorporated into individual and team sports and became less prominent as objectives unto themselves. Several developments, however, have led to a renewed focus on physical fitness and promoting better health. With SO’s unique global reach and access to athletes with ID at events worldwide, SO leaders noted a lack of quality healthcare for the people with ID who were participating in its events (Special Olympics, 2010). In 1997, the Healthy Athletes program was launched. It was designed to provide athletes with an opportunity to receive free health screening tests, referrals, and health lifestyle counseling during sports competitions. The mission of the Special Olympics Healthy Athletes program is to improve athletes’ ability to train and compete in SO; its goal is to help SO athletes improve their health and fitness, leading to enhanced sports experience and improved well-being. In this regard, studies have documented declines in physical activity and increases in obesity among adults with ID in many countries (Lewis, Lewis, Leake, King, & Lindemann, 2002; Rimmer & Yamaki, 2006; van Schrojenstein & Valk, 2005; Yamaki, 2005). Health screenings conducted during the 1999, 2001, and 2003 World SO Games revealed that many of the athletes were overweight or obese. Surveys of SO coaches across the world have provided a consensus that athletes are in need of fitness training above and beyond what they receive from their sports practices. At the same time, health screenings performed at SO Games also showed that some 25 to 35% of the athletes had undetected dental, vision, and hearing health needs. These are most likely indicative of limited access to healthcare and/or flawed communications between patients and providers even when healthcare is available (Corbin, Malina, & Shepherd, 2005). SPECIFIC AIMS Recognizing that obesity, diabetes, and low bone mineralization occur more often among persons with ID, the Special Olympics’ Healthy Athletes Program endeavored to heighten awareness and interest in fitness and better nutrition by adding health promotion as one of its components. However, in order for habits to meaningfully change, efforts to increase exercise and improve lifestyle choices have to be ongoing, reinforced, and encouraged. Ideally, such efforts would involve families, carers, and coaches. In 2002, SO started a number of locally based health promotion pilot programs for athletes lasting for several weeks. The activities in these pilot programs extended beyond the regular SO sports and training activities. With federal funding, five pilot programs in the U.S. were initiated to test different strategies to improve physical fitness and lifestyle choices and habits. A function of the health promotion demonstration projects was the identification and development of programs that are community-based and focused on health and fitness beyond the training and competition settings. Specific objectives for the pilot programs were composed of the following: improving long-term health outcomes for SO athletes by giving them the information, encouragement, and facilities they need to sustain physical fitness and healthy lifestyle choices; improving the quality of life and self-image of athletes; 120
providing the athletes the means by which they can work to better their own health and well-being; and allowing more people with ID to participate in SO and retaining those athletes who are currently active. Each pilot program was conceptualized and developed by a state or local SO program affiliate. Table 1 provides a description of the projects along with their aims. Their underlying purpose was linked to several activities, including partnering opportunities between SO and governmental, private, for-profit, and notfor-profit organizations; emphasizing a wellness program that included a focus on food choices, exercise, sleep adequacy, and hygiene; varying intensities of participation (e.g., how often the interventions take place, the ratio of instructors/motivators to athletes); and identifying end points as measures of progress. To understand better how well these programs functioned and what effects they had on the participant athletes, an independent external program evaluation was undertaken. A large university located in a Midwestern state conducted the study with funding from the SO organization through a collaborative agreement with the Disability and Health Branch of the Centers for Disease Control and Prevention. The primary goal of the program evaluation was to discern models for replication and identify elements that demonstrated success for replication. It was intended that the “lessons learned” from the affiliates’ experiences in running these pilots could be used to guide the development of future community-based health promotion programs across the U.S. and in other countries.
METHODS Subjects All of the athletes participating in the health promotion pilot programs were recruited by program directors at each site using a convenience sampling method. The mean age of the 56 athletes participating in four of the five pilot sites was 32 years (SD = 11.3). Of the athletes, 54% were women (mean age = 33) and 46% were men (mean age = 31). With respect to ethnic identification, 11% were African-American, 84% were of European heritage, 4% were Hispanic, and 2% were “Other” (primarily Haitian). The athletes lived in a variety of settings that included 64% with their families, 20% in small supervised residences (3–15 beds), 9% in large supervised residences (>15 beds), 4% in their own houses, and 4% with either a spouse or a friend. Five SO programs located within the U.S. participated in the pilots. Affiliates in Colorado, Illinois, Massachusetts, South Carolina, and Texas received a grant of US$15,000 each to design and implement unique self-conceptualized pilot health promotion programs and operated them over a 12-month period. The programs engaged in community partnerships with a range of community resources (e.g., community recreational facilities, university centers, private rehabilitation clinics) and had specific defined activities aimed at improving health outcomes for the athletes involving increased physical activity and improved healthy food choices. All of the programs had the prerogative to develop their own health-promoting content (e.g., hygiene, sleep, sport safety). The projects ranged from six- to 12-week cycles and
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TABLE 1 Project descriptions and aims Project description
Special Olympics South Carolina implemented the Steps to Your Health (STYH) health promotion program. This program included one-hour classes for eight weeks with two optional home visits. Special Olympics Massachusetts formed a partnership with the YMCA on Cape Cod, MA to develop and implement Fitness for All: A Unified Approach to Physical Fitness. The program was composed of health and fitness training three days a week and sports training one day a week. Special Olympics Colorado implemented a HealthOne Triple Challenge program to provide training and education to Special Olympics athletes at rehabilitation clinics on the use of weight training and cardiovascular exercise machines. Athletes received training at the clinic three days a week for six weeks and had their food diaries reviewed by a nutritionist. At the end of the six weeks, athletes completing the program were offered health club memberships. Special Olympics Illinois implemented an eight-week training program, Engagement Through Fitness, through a partnership with the Rehabilitation Research and Training Center on Aging and Developmental Disabilities. This program was located in a city park district program and created an Engagement through Fitness Easy for Me Training Manual to support Special Olympics coaches to organize, tailor, and implement a health promotion program in various sites. Special Olympics Texas implemented the SOTX Healthy Living program that provided a health fair booth at summer games and disseminated a curriculum kit of educational and instructional materials (brochures, workbooks, educational video, hands-on activities, etc.). This pilot program also provided in-depth training to one coach and one athlete leadership program facilitator in four regions to facilitate the year-round Healthy Living program.
included the following types of activities: group classes, personal training, and home visits. The design and subject involvement of each pilot program was reviewed and approved by the Special Olympics Institutional Review Board. Prior to participation in the study, each participant with an ID received medical clearance from their healthcare provider and signed a consent form. For participants with an ID who were not their own guardians, consent was sought from their legal guardian. The study was also reviewed and approved by the University of Illinois at Chicago Institutional Review Board. The data received by the university’s research team was de-identified and coded so as to protect the identity of the participants. At the outset, the research evaluation team provided a oneday training session on the assessment tools for each of the five program directors as program staff at each site collected the data.
Project aims
Increase fruit intake, vegetable intake, and increase physical activity to decrease body mass index.
Establish a 20-h position at the YMCA Cape Cod as the Special Olympics coordinator to recruit participants and organize and monitor fitness training and nutrition education program and sports training. Design a three-phase program to improve health and well-being of Special Olympics athletes and their partners.
Train trainers to disseminate a packaged fitness and health education curriculum throughout the state of Illinois.
Educate athletes in areas related to nutrition, exercise, and sleep.
The athletes and their informants then completed questionnaires on psychosocial data at baseline and after completion of the health promotion program. Staff conducted physical health assessments with the athletes before and after the program. The coaches completed a questionnaire on athlete involvement in SO before the program and the athletes responded to a satisfaction interview after the program. Interviews with program directors at the completion of the health promotion program provided information on process and structural variables. In this article, we present both quantitative findings from four of the five sites and qualitative findings from all five sites (one site did not provide any quantitative data, which reduced the sample size). The evaluation process focused on the following areas and findings: psychosocial and physical health status, physical and nutrition cognitions and supports, and health behaviors among athletes; program satisfaction among coaches and athletes; and 121
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process and structural variables associated with implementation of health promotion programs within the SO program. Instruments Data collected to evaluate the Special Olympics Health Promotion pilot programs included information on the following: demographics; health status, cognition, and behavior; supports; and participant satisfaction with the health promotion program. Data were also collected during semi-structured debriefing interviews with each of the site program directors. Demographic information included age, sex, ethnicity, and type of residence. The data related to health status and behaviors were composed of psychosocial health, physiological health, and exercise and nutrition cognitions and supports. Psychosocial well-being status measures included perceived health status to assess a person’s self-reported health status and measures assessing the participants’ perceptions related to friendships (Ware & Sherbourne, 1992). Perceived health status was assessed by asking athletes to report their overall perception of health (ranging from “excellent or very good,” “good,” “fair,” to “poor”). Informants (i.e., family members, residential staff, and program coaches) also rated the health of the participants. To assess psychosocial health, the participants were asked the degree to which they had a sufficiency of friends (ranging from “plenty,” “some,” to “no friend”), frequency of feeling lonely (ranging from “none of the time,”“many times,” to “all the time”), and frequency of feeling sad (ranging from “once in a while,” “many times,” to “all the time”) (Kovacs, 1985). Physiological health status was inferred from body mass index (BMI), which is computed from height and weight (American College of Sports Medicine, 2006), and from hip and waist circumference, which is computed from a measure of abdominal body fat and waist to hip ratio (American College of Sports Medicine, 2006). Waist-to-hip ratio (WHR) provides an index of abdominal fat distribution and is a guide in assessing risk, particularly for CVD (Snijder, van Dam, Visser, & Seidell, 2006). Two measurements were used to evaluate upper and lower body flexibility: the shoulder flexibility test (Miotto, Chodzko-Zajko, Reich, & Supler, 1999; Rikli & Jones, 1999)––which determines the range of motion or asymmetry of movements when comparing the two shoulders, and the YMCA Sit-and-Reach (American College of Sports Medicine, 2006; Heyward, 2006)––which measures lower back and hamstring flexibility. Increased flexibility reduces muscle tension, prevents muscle and joint injuries, increases range of motion, and improves circulation and balance. Two muscle strength and endurance measurements were used: the one-minute timed modified push-up test (American College of Sports Medicine, 2006; Baumgartner, Oh, Chung, & Hales, 2002) and the one-minute timed sit-to-stand test (American College of Sports Medicine, 2006; Bohannon, 1995). The one-minute timed modified push-up test measures the endurance of the arms and the shoulder girdle and the oneminute timed sit-to-stand test measures muscle the strength and endurance of the large leg muscles. The benefits of strength and endurance training include an increase in muscle, tendon, bone, and ligament strength, decrease in bone loss, increased selfesteem, confidence, and self-worth, increased physical function122
ing, and decreased risk of injury. The six-minute walk test (American Thoracic Society, 2002; Enright, 2003; Kervio, Carre, & Ville, 2003; Oh-Park, Zohman, & Abrahams, 1997) was used to assess aerobic fitness for being aerobically fit improves cardiovascular function, increases overall energy level, and decreases fatigue, irritability and depression. Physical activity and nutrition cognitions and supports were composed of the seven-question Physical Activity Knowledge Questionnaire (Heller, Hsieh, & Rimmer, 2002; 2004a) and the seven-question Nutrition Knowledge Questionnaire adapted from the Suder School Nutrition Knowledge Survey (1999), which assessed knowledge of physical activity and nutrition. Additionally, the nine-point Exercise Outcome Expectations Scale assessed perceptions and attitudes toward physical activity, the nine-point Barriers to Exercise Scale assessed reasons that it might be difficult for a person to engage in physical activity, and the five-point Exercise Self-Efficacy Scale assessed a participant’s degree of certainty (or confidence) to engage in physical activity (Heller et al., 2002; 2004a). The Fat, Fruit, and Vegetable Screener (Block, Gillespie, Rosenbaum, & Jenson, 2000) was filled out by informants to assess dietary intake for each athlete. The information gathered on involvement in SO and program satisfaction by the participants and interviews with the coaches, staff, and families included both quantitative and qualitative information. The program directors were interviewed by the research evaluation team after the health promotion program was completed at each site. They were asked questions about the program’s goals and issues, including the following: (1) Was the program effective in meeting its stated purpose, goals, and objectives? (2) What positive and negative changes/differences were made? (3) What would they have performed differently or what would they have added and deleted to the program? (4) What did athletes and/or coaches think were program’s strengths? (5) What were the outcomes of the program––intended and unintended? (6) What were the outcomes for athletes? and (7) What were the lessons learned? Statistical Analyses Standard descriptive statistics were evaluated for all continuous variables. All data were entered in SPSS Version 12.0 (SPSS Inc., Chicago, IL, USA) and all statistical analyses were performed using SPSS, version 12.0. RESULTS The analyses include descriptive data on psychosocial and physiological well-being, and physical activity and nutrition cognitions and supports. Results from the repeated measures comparisons from baseline to follow-up and qualitative data on involvement and satisfaction with SO and process and structural implementation issues are presented. Health Status and Health Behaviors Psychosocial health Of the 56 athletes, 28% reported that their health was excellent or very good, 61% stated that their health was
Journal of Policy and Practice in Intellectual Disabilities
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TABLE 3 Waist-to-hip means and standard deviation (SD)
TABLE 2 Body mass index (BMI) ratios Participants’ BMI ratios %
BMI guidelines
