Review of Literature
Adults with I/DD have high rates of obesity, low fitness levels, and lead sedentary lifestyles (Rubin, et al., 1998; Fujiura, et al., 1997). For persons with I/DD, the combination of sedentary lifestyles, high fat diets, and low fruit and vegetable diets increases their susceptibility to health conditions, such as cardiovascular disease (CVD), obesity, osteoporosis, hypertension, Type II diabetes, and depression (Beange et al., 1995; Draheim et al., 2000). CVD is one of the most common causes of death among adults with I/DD (Janicki, et al., 1999; Hayden, 1998).
The onset of CVD is strongly associated with lack of physical activity and poor nutrition; and obesity is related to less restrictive living environments (Robertson et al., 2000; Rimmer, Braddock & Marks, 1995; Prasher, 1995). With the increasing numbers of aging adults living in community-based settings, major health concerns are emerging and individuals are experiencing greater disparities in health status compared to their non-disabled peers. These health disparities led to the 2002 Report of the Surgeon General’s Conference on Health Disparities and Mental Retardation which identified two key goals to: 1) integrate health promotion into community environments of people with I/DD and 2) increase knowledge and understanding of health through practical and useful information.
Our center-based health promotion program using the curriculum Exercise and Nutrition Health Education Curriculum for Adults with Developmental Disabilities (Heller, Marks & Ailey, 2001) demonstrated improvements in physical fitness, life satisfaction, self-efficacy, exercise knowledge and perception, and social-environmental supports, along with reductions in barriers to exercise, depression and loneliness (Heller, Hsieh & Rimmer, 2002). This curriculum was based on the Transtheoretical Model of Behavior Change and Bandura’s social cognitive theory of social learning theory (see Appendix F). While data support the benefits of physical activity and nutrition programs for adults with I/DD in the laboratory, little research is available on ways to increase physical activity and improve food choices in settings in which people work and live. A need exists for training models to educate staff to implement health promotion program in these settings.
R1 Table 1. Paper-Based and Web-Based Training: Advantages and Disadvantages
|Disadvantages of Paper-Based Training
||Advantages of Web-Based Training
- Work release is difficult to coordinate.
- 1 on 1 attention may be required
- Different skill levels can complicate the training.
- Training must be adjusted to different learning paces.
- May be difficult for persons who have difficulty processing lecture material.
- Delivery pace must match participant's learning pace.
- Drain on agency's staff time and monetary resources due to high turnover rates among direct care staff necessitating frequent training of new staff.
- Less anxiety about making mistakes with on-line simulations.
- Varying skill levels and topics can be covered when participants work at their own pace in on-line session.
- Participants can work on topic and tutorial skill level that best suit their needs resulting in greater learning gains.
- Easier to systematically replicate.
- Wider and more cost-effective dissemination by training more persons with less staff time and agency resources.
Paper-based training versus web-based training.
Traditionally, staff training consists of presenting course material from a manual by a trainer in a classroom setting. Although the real-time, personal engagement with a trainer is a primary advantage, this method has disadvantages noted in Table 1. As a fairly new method of delivering training by computerized, multi-media tutorials and self-paced learning modules, web-based training offers several advantages (Table 1) that outweigh the real-time, personal interaction. The proposed project will provide much needed data on the efficacy of these two training models for promoting and maintaining healthy behaviors among adults aging with I/DD.
The proposed research project aims to broaden the generalizability of a health promotion program to increase physical activity and improve food choices among adults aging with I/DD in settings in which they work and live. Staff in community-based agencies (CBAs) will be trained to implement a physical activity and health education program tailored to their clients' individual needs. A randomized trial will evaluate the efficacy of two train-the-trainer approaches for promoting and maintaining healthy behaviors among adults with I/DD (agency clients/residents). The train-the-trainer approaches consist of 1) Paper-based Train-the-Trainer (PbTT) with on-site instruction and 2) Web-based Train-the-Trainer (WbTT) with on-line guided instruction and systematic reminders and incentives. Reminders and incentives have been found to increase participation in web-based instruction (Hahn & Willis, 2000).
Sample Population and Methodology
Focus groups (3 to 5 groups of 8 to 10 persons) will be conducted among CBA staff in the first six months to refine the training modules and translate it into a web-based format. Focus groups will explore strategies for enhancing individual and system level capacity to implement a health promotion program that incorporates physical activity and health education modules. Focus groups will also be conducted after the intervention to discuss the findings’ applicability to other settings. The PbTT and the WbTT materials will be pilot tested at two sites.
Six organizations serving persons with I/DD have agreed to participate as research sites for the Train-the-Trainer project, including three Chicago agencies (Northpointe Resources, Clearbrook, and Trinity Services), along with agencies in New York (New York Developmental Disabilities Planning Council), Florida (UPARC), and Indiana (Easter Seals in Indiana).
Groups of clients (n = 108) and support staff in day or residential programs (n = 63) will be recruited. Only clients with mild to moderate levels of intellectual disability will be recruited to ensure assessments have adequate reliability. Participants will be age 30 years and older due to early aging processes associated with lifelong disabilities. Agency staff will serve as informants for assessments requiring historical and functional data and staff will complete self-physiological and psychosocial assessments.
After screening, groups will be randomly assigned into the control group or one of two treatment groups. The Control group will receive training at the end of the study at no cost; Treatment group 1 will receive Paper-based Training (PbTT); and, 3) Treatment group 2 will receive Web-based Training (WbTT) with Reminders and Incentives. Researchers will ensure that clients assigned to each group work and live in separate areas. All groups will complete pre- and post-tests on physiological and psychosocial assessments before and immediately after the intervention component. Research staff and agency staff will conduct follow-up assessments for the three groups after the training and at 6, and 12 months after the training is completed.
a) PbTT and WbTT Program. The train-the trainer modules are based on the Transtheoretical Model of Behavior Change and Bandura’s social cognitive theory of social learning theory to provide staff with the theoretical underpinnings for adopting health behaviors (Appendix F). Agency staff in both treatment groups will receive 6 1-hour modules to implement the 12-week physical activity and health education classes for clients. Training modules include: 1) understanding disability, health, physical activity, and nutrition; 2) assessing my behaviors and my body; 3) tools for making lifestyle changes; 4) supporting and maintaining healthy lifestyles; and, 5) procedures for implementing and maintaining health promotion programs within day/worksite programs including safety and emergency policies and procedures. Additionally, during the physical activity and health education classes, staff will participate in 12 1-hour topical seminars (Appendix F). Staff will receive 18 CEUs for participating in the Train-the-Trainer program. Agency staff in the WbTT group will receive weekly reminders and incentives for creating supportive environments for clients to incorporate physical activity and healthy nutrition into clients’ daily activities. Weekly emails will provide staff motivational and modeling strategies for eliciting healthy behavior. Staff will also be given strategies and resources to make connections with existing community resources.
b) Physical Activity and Health Education Classes for Clients. Staff will develop a physical activity program for participants in both treatment groups to engage in an hour a day of physical activity, three days a week for 12 weeks. Physical activity modalities will vary according to participant’s preferences and agency resources. Along with the physical activity, staff will teach health education classes to participants in both groups using the Exercise and Nutrition Health Education Curriculum.
Data Collection and Measures
Before participants begin the program, they must undergo a health and fitness evaluation (conducted by researchers and agency staff), obtain consent from their health care provider, and be screened for blood lipids and fasting blood glucose. Demographic and health data will be collected at the initial time of testing (age, race, gender, number and type of chronic conditions, level of I/DD, socioeconomic status, educational level, employment status, economic level, primary support person, and type of residence). Clients/residents’ health status will be assessed using self-report measures and information from staff. Attendance of persons with I/DD in the exercise and health education classes will be collected through weekly reporting forms.
Demographic data will be collected for staff participants in the project, along with information about their own health status, health behaviors, self-efficacy, and perceptions about physical activity and healthy nutrition for themselves and persons with disabilities. Staff ratings of their own health, depression, physical activity participation, nutrition, and behavioral risk factors will be assessed, along with stages of change, self-efficacy, and barriers and supports for physical activity. See Appendix E for assessment forms.
Physiological health status measures for adults with I/DD at each data collection point will include: body composition measurements (height and weight for BMI andwaist to hip ratio); cardiovascular fitness status (6-Minute Walk Test); flexibility (upper body – Apley Test and lower body – sit and reach); strength and endurance (upper body – handgrip strength and lower body – leg press, leg extension); functional status (Timed-Get-Up-and-Go - TGUG).
For staff and adults with I/DD, psychosocial health status measures include ratings of health, depression, life satisfaction, adaptive functioning, physical activity participation, and nutrition behavior. Changes in self-efficacy, and barriers and supports for physical activity and nutrition will also be assessed. See Table 2 and 3 for reliability and validity statistics.
Active Protocol # 2004-0113
Tools Being Adapted
Nutrition Activity Knowledge Scale
Nutrition Outcome Expecation Scale
Tools Being Created
Nutrition Barriers Scale
Health Promotion in Your Agency: Organization Evaluation Tool
Recruitment and training in process. Training and testing has been scheduled for 5 community-based agencies through July 2005
Data Collection Status
Data collection is currently in process.
Day and residential agencies for persons with intellectual and developmental disabilities (I/DD) who are participating in the Train-the-Trainer Project
are requesting a health promotion survey to evaluate organizational attitudes and knowledge about physical activity and nutrition for persons with I/DD.
Project Progress to Date
While there are no results yet from the pilot project, data from the first recruits in combination with data from our earlier study were analysed.
These analyses were based on data collected on 37 intervention and 25 control subjects. These subjects comprised 60% white, 32% African American, and 8% Hispanic. There were 35 females and 27 males. Results indicate that the key barriers to exercise for adults with I/DD were cost, being tired or bored by the exercise, and problems using equipment. About half of the individuals lacked confidence in their ability to perform exercises. Overall, participants in the health promotion program had the following improvements in physiological and psychosocial health: 1) greater life satisfaction; 2) increased exercise knowledge; 3) more positive attitudes toward exercise; 4) increased confidence in ability to exercise; 5) fewer barriers preventing participants from exercising; 6) improved cardiovascular fitness; and, 7) increased muscle strength and endurance. Additionally, our results demonstrate that adults with I/DD can understand health behavior education and benefit from physical activity. While the
university-based program resulted in positive short-term outcomes, our results support the need for community-based programs to maintain long-term adherence.
Compared to the control group, participants in the intervention group reported decrease in barriers to exercise immediately after training (p<.001) and 6 months
after (p<.05); improvement in their attitude toward exercise immediately after training (p<.001) and remained at 6 months after (p<.01); improvement in their exercise knowledge immediately after training (p<.01) and remained at 6 months after (p<.001); improvement in their social-environmental supports immediately after training (p <.05); improvement in their confidence to perform exercise immediately after training (p <.001) and 6 months after (p<.05).
Focus groups have been conducted among staff in worksite and day programs for adults with I/DD to develop the paper-based version of the train-the-trainer health promotion program for adults with I/DD. The focus groups have explored strategies for enhancing the capacity of individuals with I/DD, agency staff, and the agency policies and procedures to implement health promotion program that incorporate physical activity and health education modules. Focus groups were also conducted after the first intervention group to discuss the findings’ applicability to other settings.
To date, this project has produced a curriculum titled Exercise and Nutrition Health Education for Adults with Developmental Disabilities Train-the-Trainer Curriculum. It is designed to be used in conjunction with the Exercise and Nutrition health Education Curriculum for Adults with Developmental Disabilities, that was developed in the earlier Roybal project.
The Train-the-Trainer Curriculum
The Train-the-Trainer Curriculum was developed using the Transtheoretical Model of Behavior Change and Bandura's Social Cognitive Theory. By using the transtheoretical approach and social cognitive theory, staff will learn the processes of modifying or changing health behaviors. The transtheoretical approach to behavior change uses five stages in which one becomes increasingly more motivated and ready to modify or change a particular behavior. According to social cognitive theory, movement toward behavior change is affected by one’s: 1) perception of the pros and cons of change, 2) confidence in the ability to change, and 3) perceived level of social support to adopt a new behavior.
The Train-the-Trainer Curriculum has six to eight hours of training, with information and tools to implement a physical activity and health education program for adults with DD. This curriculum enhances staff’s skills, knowledge, and abilities to work with clients and/or residents to become more physically active and make healthy food choices. This curriculum offers strategies to do the following activities: 1) engage individuals with DD to participate in a physical activity and health education program, 2) teach core concepts relating to physical activity and nutrition to persons with DD, and 3) support individuals to incorporate physical activity and healthy lifestyles into activities of daily living.
The goal of the Train-the-Trainer Curriculum is to provide staff with the skills, knowledge, and abilities to:
1) implement a physical activity and health education program for adults with DD,
2) teach adults with DD ways to increase physical activity and healthy food choices, and
3) support adults with DD to make long-term lifestyle changes.
Specifically, the curriculum has the following objectives for staff:
1) review key concepts related to teaching and monitoring physical activity for adults with DD (e.g., heart rate, blood pressure, maintaining equipment, and safety),
2) learn how agency culture and staff knowledge, attitudes, and beliefs affect adults with DD (e.g., perception of physical activity and healthy foods),
3) evaluate and track participants’ health status and behaviors during the physical activity classes (e.g., pain, sweating, drinking, breathing, nutrition, medications, illness, and sleep),
4) set realistic goals for participants,
5) encourage participants to make lifestyle changes (e.g., increase physical activity and make healthy food choices), and
6) support participants to maintain long-term healthy lifestyles.
The Train-the-Trainer Curriculum Tools
The Train-the-Trainer Curriculum includes a Physical Activity and Health Education Personal Notebook for participants.
This notebook is designed to give participants feedback on their progress over time. Additionally, twelve Core Orientation Sessions are included in the curriculum to familiarize participants with a physical activity program and to teach them how physical activity will affect their body. These modules include the following topics: heart rate; blood pressure; sweating; maintaining equipment; safety; issues; good pain; bad pain; drinking water; breathing techniques; and the interaction of sleep, medications, illness, and food with physical activity.
We have presented papers and conducted workshops at several state, national, and international conferences:
• International Association for the Scientific Study of Intellectual Disability 12th World Congress 2004
• American Association on Mental Retardation 2004 Annual Meeting
• Clinical Updates Conference, Southern Illinois University
• Multi-Disciplinary Program in Geriatrics for Non-Physicians, St. Louis University Health Sciences Center
• Coming of Age Conference in Winnipeg, Canada
• Idaho Statewide Conference on Developmental Disabilities, Idaho Association of Developmental Disability Agencies
• American Society on Aging/National Council on Aging Joint Conference 2004
• 2004 Aging/Mental Retardation Cross-Systems Conference Building Bridges sponsored by the Pennsylvania Department of Public
Welfare and the Office of Mental Retardation
• 2004 Brazilian Congress on Aging and Disability, UNESCO and Instituto APAE, Sao Paulo, Brazil
We have shared our assessment tools locally, nationally, and internationally. Our workshop and conference presentations continue to disseminate the importance of physical activity, good nutrition, and healthy lifestyles for people with I/DD. Moreover, our work is highlighting the significant need for understanding the facilitators and barriers to long-term lifestyle changes and adherence to healthy lifestyles among adults with I/DD.
Nutrition Activity Knowledge Scale.
- Braunschweig, C.L., Gomez, S., Sheean, P., Tomey, K.M., Rimmer, J.H., & Heller, T. (2004). Obesity and risk factors in adults with Down syndrome. American Journal on Mental Retardation, 109(2), 186-193.
- Heller, T., Hsieh, K., & Rimmer, J. (2004). Attitudinal and psychological outcomes of a fitness and health education program on adults with Down syndrome. American Journal on Mental Retardation, 109(2), 175-185.
- Rimmer, J. Heller, T., Wang, E., & Valerio, I. (2004). Improvements in physical fitness in adults with Down syndrome. American Journal on Mental Retardation, 109(2), 165-174 .
- Heller, T., Marks, B., & Ailey, S. (2004). Exercise and Nutrition Health Education Curriculum for Adults with Developmental Disabilities (2nd. ed.). Rehabilitation Research and Training Center on Aging with Developmental Disabilities, University of Illinois at Chicago.
- Heller, T. & Marks, B. (May 25, 2004). Wellness in Developmental Disabilities Populations, Clinical Updates Conference, Southern Illinois University, Springfield, IL.
- Heller, T. Exercise and Nutrition Health Education for Adults with Developmental Disabilities, workshop at the 2004 Aging/Mental Retardation Cross-Systems Conference Building Bridges sponsored by the Pennsylvania Department of Public Welfare and the Office of Mental Retardation, Drexel University College of Medicine, Pennsylvania, April 13, 2004.
- Heller, T. Promoting Healthy Aging in a Community Setting, Clinical Updates Conference, Southern Illinois University, Springfield, IL, May 26, 2004.
- Heller, T., Hsieh, K., Marks, B., & Rimmer, J. Exercise Adherence and Outcomes after Exercise and Health Education Program for Adults with Down Syndrome. International Association for the Scientific Study of Intellectual Disability 12th World Congress, Montepellier, France, June 14-19, 2004.
- Heller, T., Hsieh, K., Marks, B., & Rimmer, J. Short- and Long-Term Outcomes of an Exercise and Health Education Program for Adults with Down Syndrome, American Association on Mental Retardation 2004 Annual Meeting, Philadelphia, PA, June, 2004.
- Heller, T., Marks, B., Pastorfield, C., Wagner, M., Corbin, S., Hsieh, K., & Sisirak, J. (June, 2004). Evaluation of the Special Olympics International Health Promotion Pilot Projects, AAMR 2004 Annual Meeting, Chicago, IL.
- Marks, B., (April, 2004). Developing Healthy Lifestyles: Misericordia Health Promotion Program. Presentation for the Misericordia Family Association meeting, Chicago, Illinois.
Marks, B. (September 21, 2004). Physical activity and health education for persons with intellectual and developmental disabilities. MARO Employment and Training Association Conferences, Okomos, Michigan.
Provided technical assistance on health promotion programs within community-based agencies.
Distribute the Exercise and Nutrition Health Education Curriculum for Adults with Developmental Disabilities (2nd. ed.) and other articles on health promotion.
Special Olympics International (11-1-03 to 10-31-05)
Evaluation of National Special Olympics Healthy Athlete Pilot Projects (1-1-04 to 6-30-05)
The Retirement Research Foundation (1-1-04 to 12-31-05)
Health Promotion for Adults Aging with Intellectual and Developmental Disabilities: Train-the-Trainer Project (10-1-03 to 9-30-08)
Easter Seals (9-1-04 to 12-31-05)
Unified Approach to Healthy Lifestyles for Adults with Intellectual and Developmental Disabilities
Recognition and Service
Heller, T. Peer-review panel. American Journal on Mental Retardation.
Marks, B. National Organization of Nurses with Disabilities Advisory Board (2003 – present) – Member of the Advisory Board.
Marks, B. Equip for Equality – Advisory Council Member on the Traumatic Brain Injury Project, 2003 – present.
Rimmer, J. The National Center on Physical Activity and Disability (NCPAD) directed by Professor James Rimmer, Ph.D. recently received the first Best Effective Practices Award from the Centers for Disease Control and Prevention. The award recognizes individuals or organizations that make significant contributions to public health practice at the community, state, and national levels.