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Developing a Physical Activity Education Curriculum for Adults With Intellectual Disabilities Amy E. Bodde, Dong-Chul Seo, Georgia C. Frey, David K. Lohrmann and Marieke Van Puymbroeck Health Promot Pract 2012 13: 116 originally published online 28 March 2011 DOI: 10.1177/1524839910381698 The online version of this article can be found at: http://hpp.sagepub.com/content/13/1/116

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Developing a Physical Activity Education Curriculum for Adults With Intellectual Disabilities Amy E. Bodde, MPH, Dong-Chul Seo, Georgia C. Frey, David K. Lohrmann, Marieke Van Puymbroeck, Adults with intellectual disabilities have high rates of physical inactivity and related chronic diseases. Researchers have called for an increase in the development and evaluation of health education programs adapted to the unique needs of this population. Forma tive and process evaluation strategies were applied to develop a physical activity education program. The first phase of formative evaluation included a comprehensive literature review to select educational strategies and curriculum content. The theory of planned behavior was selected as a guiding framework, and meetings with stakeholders were held to assess feasibility. The second phase of formative evaluation included an assessment of materials by an expert panel and the priority population, and pilot testing. Next, field testing was implemented, followed by process evaluation and an assessment of implementation fidelity. The final curriculum was developed as a result of the completion of the aforementioned steps and led to a successful physical activity intervention. Keywords: disability; health promotion; health education; physical activity; process evaluation; formative evaluation

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t is well documented that adults with intellectual disabilities (ID) have high prevalence rates of obesity and physical inactivity (Chassler & Freedman, 2004; Draheim, 2006; Peterson, Janz, & Lowe, 2008a;

Health Promotion Practice January 2012 Vol. 13, No. 1, 116-123 DOI: 10.1177/1524839910381698 © 2012 Society for Public Health Education

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Rimmer, Braddock, & Fujiura, 1993; Rimmer & Yamaki, 2006; Temple, Frey, & Stanish, 2006). Regular physical activity (PA) is known to be critical for the maintenance of good health, increased longevity, and prevention of chronic diseases such as cardiovascular disease, stroke, Type II diabetes, some cancers, and depression (Kesaniemi et al., 2001; Paffenbarger et al., 1993; Pate et al., 1995). In spite of this knowledge, however, there have been few health promotion programs designed to teach adults with ID about PA. Although health information abounds for the general population, very little empirical evidence exists regarding the effect of educational health programs for people with ID. To fill that void, many researchers have called for an increase in the development and evaluation of health promotion programs for people with ID (Draheim, 2006; Krahn, Hammond, & Turner, 2006; McGuire, Daly, & Smyth, 2007). These programs would facilitate informed decision making about health by people with ID (Bechtel & Schreck, 2003; Frey, Buchanan, & Rosser Sandt, 2005). Furthermore, there is a need for more research regarding the best educational methods for increasing health knowledge and skills for adults with ID. In a comprehensive research review commissioned by the Special Olympics on the health status of this population, Horwitz, Kerker, Owen, and Zigler state that despite the increased health risks of people with ID, “little research exists on Indiana University, Bloomington, IN, USA

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Authors’ Note: There is no conflict of interest involved with this study. This paper has not been published elsewhere and has not been submitted simultaneously for publication elsewhere. All authors approve of this submission. Please address correspondence to Amy E. Bodde, MPH, PhD, Department of Applied Health Science, Indiana University Bloomington, 801 E. 7th St, Bloomington, IN 47405; e-mail: [email protected].

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effective prevention programs and treatment strategies for this group” (2000, p. 58).

> BACKGROUND Whether adults with ID understand the benefits of PA and the associated health consequences of sedentary living is uncertain. Currently, most adults with ID have moved from controlled, institutional environments to community living situations with various levels of support (Braddock, 1999). Accompanying this increase in independence are expectations to be more self-determined, self-regulating, and autonomous (Wehmeyer & Bolding, 2001). However, to make wise decisions about their health and well-being, they need proper health education delivered in a way that accounts for their different learning abilities. Some research on the methods and materials for health education in this population exists but has been sparse (Anderson, 1993; Jobling, 2001). Unfortunately, once out of the school system, adults with ID often have little or no opportunity for education about health-related behaviors and outcomes. Mann, Zhou, McDermott, and Poston suggest that adults with ID may lack crucial knowledge and skills related to nutrition and PA, warranting that the “provision of information on these topics is a vital component of successful interventions in this population” (2006, p. 71). Quite possibly, health education and promotion curriculums for this population have largely been ignored because of the known learning deficits of people with ID. However, their capacity to learn vocational and life skills has been demonstrated (Mechling, 2008; Moni, Jobling, & van Kraayenoord, 2007). Educational interventions have shown effectiveness in the past and hold promise for increasing health knowledge and skills (Lindsay, Bellshaw, Culross, Staines, & Michie, 1992; Lunsky, Straiko, & Armstrong, 2003). Research efforts on PA promotion are highly relevant, considering the prevalence of preventable chronic health conditions faced by adults with ID (Draheim, 2006) and the lack of health education programs.

> METHODS Formative and process evaluation methods are essential for the successful development of health promotion programs (Dehar, Casswell, & Duignan, 1993). These evaluative methods were used to design the Promoting Health through Physical Activity Knowledge and Skills (PHPAKS) curriculum. Goals of this curriculum are to increase the PA knowledge and skills of adults with ID by using multimedia educational methods within a theory- and literature-based design. The curriculum development and rationale are described herein.

Rigorous formative and process evaluation procedures can improve the quality of a health promotion program and also ensure that it is feasible, assessable, and replicable. For this reason, this curriculum was developed using a multistep process of formative implementation and process evaluation guided by Dehar et al.’s categories of evaluation for health promotion programs (1993). Each stage of development and evaluation is depicted in Figure 1. Formative Evaluation Overview Formative evaluation includes reviewing available literature, defining a program model and strategies, obtaining feedback from participants, developing program evaluation strategies, and piloting the program (Dehar et al., 1993). In Figure 1, the first step of formative evaluation for this project included the selection of an appropriate health behavior model to serve as a framework for the program, a comprehensive literature review, and meeting with stakeholders (two local disability service agencies) to assess the feasibility of the program. Following these procedures, an initial draft of the program curriculum was crafted. The next step of formative evaluation involved sending the initial draft of the curriculum was sent to a review panel of four scholars in health, disability, and special education. Each member of the expert panel holds a PhD in one of the previously mentioned areas and is a current faculty member of a research institution. Experts were asked specific questions to analyze the curriculum for clarity, content, appropriateness, and interest in the following domains: content, language, visuals, and worksheets. A unique aspect of the program was the inclusion of adults with ID into the curriculum development and analysis process. This part of the study was approved by the university’s institutional review board, and each participant volunteered and signed an informed consent form. A group of four adults with ID met twice and pilot tested two lessons of the program. In addition, they were asked to comment on the readability of the curriculum and the visual materials. A second draft of the curriculum was subsequently developed using the feedback from the reviewers and the pilot tests with four participants. In addition, process measures were created that matched each learning objective of the curriculum. Process Evaluation Overview Process evaluation involves testing the program structure and delivery, documenting participant characteristics, and evaluating the fidelity of the program implementation (Dehar et al., 1993). To do so, this intervention was field

Bodde et al. / PHYSICAL ACTIVITY EDUCATION FOR ADULTS WITH INTELLECTUAL DISABILITIES


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FIGURE 1 Development Process of a Health Education Program for Adults With Intellectual Disabilities

tested with adults with ID, and the lessons were evaluated. This study protocol was approved by the university’s institutional review board. Informed consent was collected from each participant and, if necessary, their legal guardian. Process measures accompanied each lesson and are listed in Table 1. Each process measure matched the learning objectives of each curriculum session. At two time points (at the end of each lesson and 7-10 days later), participants were asked to successfully demonstrate the skill or knowledge they acquired. Participant characteristics were also documented with a brief demographic questionnaire. Two methods were used to ensure implementation fidelity of the program. First, an exact script of the program was followed during each lesson that will lend to its reproducibility. Second, at four random times throughout the program a research assistant assessed the instructor’s adherence to the script.

> RESULTS AND DISCUSSION

Formative Evaluation: Theoretical Framework The first step of formative evaluation began with the selection of an appropriate theoretical model for the program design. Theoretical bases are important for the design of interventions (Nation et al., 2003) and are considered a “best practice” of health promotion programs for people with disabilities (Drum, Peterson, & Krahn, 2008). Lesson content for this curriculum was shaped by constructs of Ajzen’s theory of planned behavior (1991), which has demonstrated usefulness for

PA research (Blue, 1995; Hausenblas, Carron, & Mack, 1997). The theory states that one’s intention to perform a behavior (in this case, PA) is based on one’s attitude toward the behavior, subjective norms, and perceived behavioral control. Then, as long as one has actual behavioral control, the behavior can be predicted. This theory is particularly relevant to adults with ID because of the actual behavioral control condition (Bodde & Van Puymbroeck, 2010). Many adults with ID do not have complete volitional control over their activity choices because of staffing constraints and transportation limitations (Wehmeyer & Bolding, 1999). Therefore, it cannot be assumed that their intention to perform a behavior will directly lead to a behavior. For this reason, lessons were developed that emphasize activities adults with ID may actually have control over, such as activities that can be done at home using household items or while watching TV. Activities without the required supervision or transportation of a staff or family member were also included. In addition to increasing PA knowledge, skills, and actual control, each lesson was designed to address one of three behavioral constructs of the theory of planned behavior. For example, perceived behavioral control was incorporated into four of the lessons. Training participants with PAs they can do on their own, that benefit them, and that are feasible and safe may improve control beliefs and increase their willingness to participate in PA. Furthermore, having participants demonstrate skills like using a pedometer, following pictorial instructions, and role-playing in PA scenarios were included in order to bolster their perceived control over the behavior.

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TABLE 1 Percent Correct for Process Measures and Retention Rate for Select Measures

Lesson 1. What is PA?

2. B enefits of PA

3. H ow much PA should I get? ow can 4. H I get more PA? 5. Physical benefits of PA 6. PA with others 7. D oing safe PA

8. Healthy eating for PA

Process Measure 1.1. Each participant will be able to name 3 or more types of PA 1.2. Each participant will be able to demonstrate ability to wear and operate a step-counter 1.3. Each participant will be able to demonstrate ability to record steps on the chart 2.1. Each participant can name 2 or more benefits of PA 2.2. Each participant can identify the 10,000-steps recommendation 2.3. Each participant can describe why 10,000 steps is good for health 3.1. Each participant will be able to describe the recommendation 5 days per week 30 minutes per day for PA 3.2. Each participant will be able to describe a PA they could do for 30 minutes per day 4.1. Each participant will be able to identify 2 or more PA they can do on their own (without staff or transportation)

Percentage Correct (Total n)

Select 1 Week Retentiona: Percentage Correct (n)

81.1% (37) 89.2% (37)

86.2% (29)

75.7% (37) 77.8% (36) 80.6% (36)

79.2% (24)

73.5% (34) 83.9% (31) 90.0% (30)

88.0% (25)

90.3% (31)

89.7% (29)

5.1. Each participant will be able to describe 2 ways that PA benefits the body

100% (33)

96.4% (28)

6.1. Each participant will identify 2 friends or staff members he or she can do PA with 6.2. Each participant will describe a PA they could do with this person 7.1. Each participant will be able to demonstrate at least 3 stretches he or she can do correctly 7.2. Each participant will be able to identify water over other beverages as a healthy option 7.3. Each participant will be able to identify weatherappropriate dress for PA 7.4. Each participant will be able to identify at least 1 way they can “sneak in” PA 8.1. Each participant will be able to discriminate between healthy and non-healthy foods 8.2. Each participant will be able to identify the relationship between portion size and weight

100% (36)

92.9% (28)

97.2% (36) 93.8% (32)

96.2% (26)

87.9% (33) 91.2% (34) 93.9% (33) 90.9% (33) 81.8% (33)

a. Percentage of participants in attendance who retained the correct information after 7 to 10 days.

The second phase of the formative evaluation was to perform a comprehensive literature review. Educational strategies and lesson content were selected based on this review. Formative Evaluation: Educational Strategy Adaptations Specific to ID A literature review was conducted in the databases PsycARTICLES, MEDLINE, Health Source: Nursing/

Academic Edition, Academic Search Premier, and ERIC. Search terms included health education, health promotion, and vocational education used in conjunction with both intellectual disabil* and mental retard*, yielding 716 articles. Duplicates were excluded and English-language articles were selected if they included adults with mild or moderate intellectual disabilities and either tested educational programs, reviewed educational methods, or recommended health education based on documented needs for this population.



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A primary purpose of this intervention was to implement innovative and effective educational strategies for this population. Recent research findings in the vocational and home living skills literature suggested that video and pictorial methods may be effective ways to teach knowledge and skills to adults with ID (Mack & Thomas, 2008; Ryba, Selby, & Brown, 2004). Alberto, Cihak, and Gama (2005) found that both static pictures and videos were effective ways to teach life skills and tasks to people with ID. A recent review of pictorial and video educational methods for teaching cooking skills found that both methods were generally effective in teaching tasks and skills to people with ID (Mechling, 2008), although conclusions may be limited by the small sample sizes in most studies reviewed. In reviewing these 22 studies, Mechling concluded that studies using videos may be particularly promising for this population. The current curriculum incorporated three different types of pictorial and video methods to enhance the learning experience. First, pictorial instructions were included with several of the lessons to demonstrate the steps of certain skills such as using a pedometer or inviting a friend to participate in an activity. Each of the pictures used in these pictorial instructions showed a person with ID demonstrating the skill. Second, the curriculum included short interactive video clips designed to demonstrate PA concepts. The video clips were integrated into a split-screen video demonstration for the instructor to use during the class. For example, the video for Lesson 1 showed a participant playing basketball and a participant sitting and listening to music. After viewing the splitscreen display, participants were to be asked in class to correctly identify which video demonstrates PA. Third, each week, every participant had a photo taken of them demonstrating the skill they acquired in class. Participants were asked to save each picture that they would keep to serve as a lesson content memory tool (e.g., a picture taken of them properly using their new pedometer). Lesson Content The available literature revealed several concerns about basic PA education in this population. A phenomenon observed among adults with ID in two different walking studies (n = 131 and n = 103) demonstrated PA participation did not occur at a sufficient level of intensity to gain any health benefits (Peterson et al., 2008a; Stanish & Draheim, 2007). In a study comparing rates of perceived exertion to actual heart rate measures, Stanish and Aucoin (2007) found that some adults with ID may also have trouble correctly identifying their level of exercise exertion. For these reasons, interventions should emphasize PAs of adequate intensity in order to achieve

desired health benefits (Stanish & Aucoin, 2007; Temple, Anderson, & Walkley, 2000). Furthermore, little is known about whether adults with ID have any knowledge of PA recommendations. One study of PA knowledge among adolescents with Down syndrome found that none of the 38 participants knew the frequency of exercise needed to gain health benefits (Jobling & Cuskelly, 2006). Knowledge of PA recommendations has been positively associated with PA participation (Kiken, 2008). Based on these findings, the recommended intensity, duration, and frequency of PA were all addressed in this curriculum. Adults with ID do not participate in sufficient amounts of PA (Temple et al., 2006) and face many environmental and social barriers that may prohibit them from regularly accessing a fitness facility or being able to independently exercise (Bodde & Seo, 2009). Prohibitive barriers were addressed in this curriculum by emphasizing PAs that could be done in the home, without staff supervision, and without transportation or cost. Activities emphasized included dancing, fitness videos or programs on TV, stair climbing, physical household chores, and use of common household items for exercise, as recommended for this population in previous studies (James, 1993). Adults with ID may have a general understanding that exercise is good for them but lack knowledge on its specific benefits (Jobling & Cuskelly, 2006). A review of PA correlates found that the expectation of benefits from PA is positively correlated with PA participation in the general population (Trost, Owen, Bauman, Sallis, & Brown, 2002); therefore, two sessions of the curriculum were designed to address the physical, mental, and emotional benefits of PA. Social support has also been a consistent and strong correlate of PA participation in the general population (Trost et al., 2002) and may be especially pertinent for this population, which often depends on others for daily support. A recent study found social support to be a predictor of PA participation and recommended incorporating social support constructs into health promotion interventions for this population (Peterson et al., 2008b). Several activities were included in the current curriculum to help increase social support skills for PA participation. Multiple role-playing activities were added: for example, participants practiced inviting a friend to go for a walk with them. They were also made aware of community opportunities for team sports such as the locally available Special Olympics teams in which to participate at no cost. Safety during PA is a concern of both caregivers and people with ID (Frey et al., 2005; Hawkins & Look, 2006). As such, one lesson would equip people with ID with the necessary knowledge and skills to safely participate in PA and address the concerns of hydration, pain, and weatherappropriate dress.



Jobling and Cuskelly found that only two of their 38 participants could explain the association between eating and health (2006) and Noland, Riggs, and Hall (1986) found nutrition to be an area of especially poor knowledge among students with ID. A final session was added to the curriculum that trained participants to recognize healthy versus unhealthy foods, proper portions, and healthy eating in conjunction with PA. Based on this review, several topics were selected for the curriculum. The curriculum included the concept of PA; physical and emotional benefits of PA; PA guidelines; practical ways to increase PA; participating with others; safety; and nutrition. Formative Evaluation: Expert Panel Review Step 2 of the formative evaluation involved assessment of curriculum materials from expert scholars and the priority population. Four experts reviewed the curriculum. Changes were incorporated into the curriculum if at least 50% of the reviewers agreed on a modification needed to improve the content or clarity of the materials. The expert panel concluded that it was necessary to choose higher order learning objectives and to pilot test the materials. Minor grammatical and formatting changes were also incorporated. Formative Evaluation: Pilot Group Input Two major themes emerged from the pilot group of people with ID. At least 50% of the individuals in the pilot group agreed that simpler and more concise language was needed for the worksheets to meet their reading levels. Each worksheet was modified accordingly, removing up to 50% of the words and simplifying the language to meet a fourth-grade Flesch-Kincaid reading level. Second, the pilot group recommended doing more interactive activities during the sessions, such as practicing exercises and skills. More activities were added to the curriculum. Furthermore, to use Ajzen’s theory of planned behavior, some curriculum content was elicited from the pilot group. Each participant shared his or her attitudes toward PA, which included both physical and emotional benefits. Examples of the benefits they shared included increased energy, strength, and heart health as well as improved self-esteem, decreased stress, and having fun. These results shaped the content of the two lessons on benefits of PA. Process Evaluation Following the formative evaluation and pilot testing, the program was revised and then field tested among volunteers from two disability service agencies. Study

participants included 42 adults with mild or moderate ID, aged 19 to 62 years (M = 38.8). Twenty-one women and 21 men participated. Their body mass index ranged from 17.6 to 50.0 (M = 31.9). All were employed, with 71.4% working in a sheltered workshop, 4.8% working in the community, and 23.8% working in both a workshop and at a community job. Living arrangements included group homes and supported living (69.0%), living with parents or family (19.0%), and living alone or with roommates (11.9%). Process measures matched to learning objectives were used to evaluate each participant’s mastery of the learning objective. Following each lesson, the research team evaluated each participant individually for their ability to independently perform the knowledge or skill outlined in the objectives. Seven to 10 days later, each participant was evaluated at the beginning of the class for their retention of a previous lesson’s objective. Table 1 lists each lesson and the accompanying process measure results. The third column presents the percentages of participants who correctly mastered the knowledge, skill, or action described in the process measure out of the total attending that class. Select measures were tested for retention 7 to 10 days later, and the percentage of attending participants who were able to retain the information or skill correctly are listed in the fourth column. The process measures revealed that 73.5% to 100% of the participants met the learning objectives in any given session (M = 87.7%). Measurement of selected objectives for retention 7 to 10 days later showed rates of 79.2% to 96.4% (M = 89.8%). Implementation Fidelity The instructor followed a script and a research assistant documented adherence to the script during four randomly selected lessons. As documented by the research assistant, 100% of the material in the script was followed; however, questions and comments from participants interrupted the script as can be expected. Other typical interruptions common to disability day service centers also occurred and included behavioral issues, nonattendance, and emergency drills. On the completion of field testing, additional minor modifications were made to the final draft of the curriculum.

> CONCLUSIONS A multistep process was used to develop, evaluate, and field test a novel PA program for adults with ID. The program was first modified based on pilot testing and the recommendations of expert reviewers. The program was then field tested with 42 adults with ID. Based on the



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formative evaluation of this PA education program and the high scores on process measures and process measure retention during field testing, it appears that these literature-based methods of health promotion (videos, pictorial instructions, worksheets, role play, and interactive activities) are promising methods to include in health promotion programs for adults with ID. The use of health behavior theories and comprehensive literature reviews are necessary steps for developing successful programs for adults with ID because of a scarcity of research on effective PA programs for this population. Novel health education programs for unique populations require rigorous formative evaluation. In this case, using experts in disability and individuals from the priority population appeared to strengthen the program design. Process evaluation through field testing further enhanced the development of a program prior to execution of a summative evaluation study. REFERENCES Ajzen, I. (1991). The theory of planned behavior. Organizational Behavior and Human Decision Processes, 50, 179-211. Alberto, P. A., Cihak, D. F., & Gama, R. I. (2005). Use of static picture prompts versus video modeling during simulation instruction. Research in Developmental Disabilities, 26, 327-339. Anderson, R. C. (1993). The need to modify health education programs for the mentally retarded and developmentally disabled. Journal of Developmental and Physical Disabilities, 5, 95-108. Bechtel, J. J., & Schreck, K. A. (2003). Balancing choice with health considerations in residential environments. Mental Retardation, 41, 465-467. Blue, C. L. (1995). The predictive capacity of the theory of reasoned action and the theory of planned behavior in exercise research: An integrated literature review. Research in Nursing & Health, 18, 105-121. Bodde, A. E., & Seo, D.-C. (2009). A review of social and environmental barriers to physical activity for adults with intellectual disabilities. Disability and Health Journal, 2(2), 57-66. Bodde, A. E., & Van Puymbroeck, M. (2010). Reviewing theoretical foundations of perceived control: Application to health behaviors of adults with intellectual disabilities. Annual in Therapeutic Recreation, 18, 131-140. Braddock, D. (1999). Aging and developmental disabilities: Demographic and policy issues affecting American families. Mental Retardation, 37, 155-161. Chassler, D., & Freedman, R. I. (2004). Physical and behavioral health of adults with mental retardation across residential settings. Public Health Reports, 119, 401-408. Dehar, M.-J., Casswell, S., & Duignan, P. (1993). Formative and process evaluation of health promotion and disease prevention programs. Evaluation Research, 17, 204-220. Draheim, C. C. (2006). Cardiovascular disease prevalence and risk factors of persons with mental retardation. Mental Retardation and Developmental Disabilities Research Reviews, 12, 3-12.

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