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Rehabilitation & Research Training Center on
Aging with Developmental Disabilities

Project Progress Summary

R4Behavioral Risk Factors and Utilization of Health Care for Persons with I/DD and Their Family Caregivers

Principal Investigator: Kueifang “Kelly” Hsieh, PhD
Co-Principal Investigator(s): Kiyoshi Yamaki, PhD Co-Investigator(s): James Rimmer, PhD, Glenn Fujiura, PhD


The following sections that need to be filled in and submitted to RRTCADD.

    1. IRB Status
    2. Assessment Tools
    3. Recruitment Status
    4. Data Collection Status
    5. Project Modifications
    6. Results

    1. Publications
    2. Presentations
    3. Trainings
    4. Technical Assistance
    5. Grants Funded
    6. Recognition and Service

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Review of Literature
Hypotheses/Research Questions
Sample Population and Methodology
Data Collection and Measures
Data Analysis
Anticipated Findings and their Implications for Future Research
Research Activities
Scholarly Activities


Review of Literature

Persons with I/DD are often at a high risk of developing chronic health conditions earlier in life. First, due to their cognitive limitations, persons with I/DD often have a limited ability to monitor their own health (Edgerton, Gaston, Kelly & Ward, 1994) and difficulties communicating early signs or symptoms of diseases to health care providers (Christensen, Peter, Nielsen & Mai, 1998; Edgerton et al., 1994). Second, persons with I/DD have high rates of obesity and lead sedentary lives(Rimmer et al., 1995; Yamaki, 2003). Third, there is an increasing trend towards less-restrictive living environments for this population (Braddock et al., 2002; Prouty, Smith & Lakin, 2001). These settings, however, often lack sufficient health supports including adequate access to health care and screening (WHO, 2000). Fourth, persons with I/DD and supporting family members are likely to live with very limited incomes (Fujiura & Yamaki, 1997; Yamaki & Fujiura, 2002) that may impact their health and their ability to seek medical services.

Many chronic health conditions are preventable through changes in personal behavior such as improved diet, increase in physical activity and a periodic health screening. Changing lifestyle behaviors and promoting the use of preventive health services have been important public health agendas for all Americans including those with a disability (U.S. Department of Health and Human Services, 2000). Although there are a number of studies of health risk behaviors in the general population, there is little research on the impact of health behaviors on the health status of adults with I/DD.

A central purpose of the proposed study is to explore the health behavior and the use of preventive health services among adults with I/DD living with their family members in Illinois. A majority of persons with I/DD live with their family members (Fujiura, 1998). Past research suggests that persons with I/DD living with family members are likely to have higher health risks than those who use residential services (Rimmer et al., 1995; Lewis et al., 2002; Yamaki, 2003). Despite its substantial population size and the suspected higher risks, our information on this segment of the population is fragmented. State-level information would be useful for policy makers and advocates to establish service priorities.

The second purpose of the study is to explore the health behaviors and use of preventive health services of family caregivers. The Tampa conference on Aging, Health and Intellectual Disabilities (Davidson et al., 2003) recommended that health risk factors and status of family caregivers be taken into account while studying the impact of aging in people with I/DD. The health and wellness of the caregivers may have a direct impact on their ability to provide care to their family members with a disability. Data on their health behavior can provide important indices on their current and future capacity to provide care. Moreover, the caregiver’s behaviors may have a direct consequence on health risks of persons with a disability (Minihan, 1999).

The proposed project will build on a Centers for Disease Control and Prevention (CDC) funded project currently being conducted by Drs. Rimmer, Fujiura, and Heller.. The CDC-funded project is collecting 50 surveys on health status and health behavior information from persons with I/DD living in community-based residential programs in Illinois. The proposed project will help fill the information gap on health of adults with I/DD living at home that exists at the state level.


Hypotheses/Research Questions

  1. What are the behavioral risk factors, and the use of preventive health services among adults with I/DD living in the family home? Are they different from those living in residential settings and the general population?
  2. Do the behavioral risk factors of persons with I/DD vary by their demographic characteristics (e.g., age, gender, social economic status of the supporting family)?
  3. What are the behavioral risk factors of family caregivers? Is it different from the general population?
  4. Do the behavioral risk factors of the family caregivers vary by their demographic characteristics?
    1. Are there detectable regional differences?
    2. Are there any detectable relationships between the behavioral risk factors of persons with I/DD and their caregivers?


Sample Population and Methodology

The proposed study will include 100 families, consisting of an adult member with I/DD residing in the family home and his or her primary caregiver, in Illinois. Using a multi-stage sampling strategies, we will sample 20 families from each of following five strata: (1) City of Chicago, (2) Cook County excluding Chicago, (3) Chicago Collar counties – include five counties, (4) Urban Countries – thirteen counties, and (5) Rural Counties – eighty-three counties.

The families will be sampled through community-based agencies providing services for adults with I/DD using a cluster-sampling strategy. There is no single-list of adults living with family members that we can utilize as a sampling frame. Thus, we will use recipients of day and employment programs as an alternative. There are approximately 18,500 adults receiving such services from 350 community-based agencies in Illinois. Included are 13,000 individuals using day program, 3,500 sheltered employees, and 2,000 supported employees. Based on the number of individuals each agency serves, five community agencies from each stratum will be selected randomly (i.e., a total of 25 agencies). At each agency, we will ask a staff member to randomly select 10 individuals living with families (over-sampling with 40% response rate projection).


Data Collection and Measures

Data Collection. The primary family caregivers will complete a self-administered questionnaire including: 1) information on health status, behavioral risk factors, and health service utilization of their relative with I/DD, 2) their own health status, behavioral risk factors, and utilization of health care, and 3) demographics information.

Measures. We will develop a new survey questionnaire adapted from the Behavioral Risk Factor Surveillance System (BRFSS) by CDC. BRFSS is a household telephone survey that monitors state-level prevalence of the major behavioral risks among adults (CDC, 2002b). The University of North Carolina has adapted BRFSS to assess the health behavior of persons with I/DD; no studies have employed BRFSS to examine the health behaviors of family caregivers.

The questionnaire used for the proposed study will address the following specific information on adults with I/DD and their caregivers:
1. Health Status includes self-rated and informant-rated health status, body weight status, chronic health conditions (high blood pressure, high cholesterol, diabetics, arthritis, heart attack, coronary heart disease, stroke, and asthma), hospitalization and injuries, current medication, and functional limitation.
2. Behavioral Rick Factors include four domains: 1) physical activity regarding exercise participation and physical inactivity (i.e., hours spending time sitting and lying), 2) dietary habits including sugar, fat, fiber and sodium intake, 3) tobacco use, and 4) alcohol consumption.
3. Utilization of health care includes 1) health care access, 2) health insurance, and 3) screening tests (e.g., physical exam, eye exam, oral hygiene screening, colorectal screening, prostate cancer screening, breast cancer screening and cervical cancer screening).
4. Demographics include age, gender, race, type of disability, level of ID, social economic status, marital status).


Data Analysis

All analyses will be conducted using the SPSS 11.0 statistical software package. Descriptive statistics including proportional frequency distributions, estimates of variance will be obtained for all the study variables. For categorical variables, Chi-square tests will compare differences between demographic groups (i.e., age, gender). For interval variables, ANOVAs (if more than two groups) or t-tests (only two groups) will assess mean differences between groups. Preliminary analysis using correlations and regressions will examine the association between health risk profiles of persons with I/DD and their caregivers.


Anticipated Findings and their Implications for Future Research

The proposed study will identify health risks among persons with I/DD and their family caregivers statewide and examine the differences between the study population and the general population. It will provide a preliminary base for developing strategies to reduce the health risks and to promote healthy lifestyle for both persons with I/DD and their caregivers living in Illinois. This study may also lead to recommendations on family supports and health care for persons with I/DD. Furthermore, it will provide a footprint to further study the interrelationships among health risks, social and environmental factors for both persons with I/DD and their family caregivers.


Research Activities

IRB Status
Active Protocol # 2004-0683

Tools Being Developed
Not applicable.

Tools Being Adapted

Recruitment Status
Recruitment on-schedule.

Data Collection Status
Data collection is currently in process.

Project Modifications
No project modifications.

Project Progress to Date
Results pending.


Scholarly Activities


  • Yamaki, K. & Ong, C. (2004, September). Preventing chronic health condition: From data to practice. Paper presented at the 2004 Annual Meeting of the American Association on Mental Retardation - Illinois, Naperville, IL.
  • Hsieh, K. & Wang, K. Y. (2004) Health Status of adults with intellectual disabilities (ID) in Taiwan: Community-living and institution. 12th World Congress International Association for the Scientific Study of Intellectual Disability (IASSID), June 14-19, Montpellier, France.
K. Hsieh & B. Marks "Alzheimer Disease: Overview, Diagnosis and Assessment."

Technical Assistance

Grants Funded

Recognition and Service