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TO ADDRESS UNHEALTHY WEIGHT IN INDIVIDUALS WITH INTELLECTUAL AND
DEVELOPMENTAL DISABILITY.
Community Based Participatory Research
Research Team
Nursing: K. Fisher, PhD; T. Hardie, EdD & C. Polek PhD
Physical Therapy: M. O’Neil, PhDNutrition: A. Ventura, PhD Special Education: M. Miller, PhD Health Sciences: Informaticist: P. Sockolow, DrPHService agency: KenCrest Services E. Shulkusky (Director of Healthcare Services) D. Gregoire (Director of Development) F. Loomis (Board Member)
Intellectual and Developmental Disability (I/DD)
Intellectual Disability = Limitations in intellectual functioning (IQ < 70) Onset before age 18. Limitations in adaptive skills that interfere with ADLs.
Developmental Disability = Severe, chronic disability = likely to continue
indefinitely Manifested before age 22 Functional limitations in 3 or more areas: self-care,
receptive/expressive language, learning, mobility, self-direction, capacity for independent living, economic self-sufficiency.
Prevalence
~4.6 million to 7.7 million people i.e. 1.5% to 2.5% of general population US Census (2011) = 311,591,917
About 30 million families are directly affected by a person with I/DD at some point in their lifetime. President’s Committee for People with Intellectual
Disability
Issue = Health Disparities
Marginalized groupHigher health risksLower rates of health promoting behaviorsLower socio-economic statusIssues with accessing servicesUnique environmental considerationsLack targeted programs to address their unique
needsHealth Care Team lacks knowledge of their unique
needs
Health Disparities Continued
Underrepresented in research Experience stigma associated with their primary Dx Designated medically underserved population by AMA (December
16, 2011).
Like other Americans, persons with mental retardation (MR) grow up, grow old, and need good health and health care services in their communities. But people with MR, their families and their advocates report exceptional challenges in staying healthy and getting appropriate health services when they are sick. They feel excluded from public campaigns to promote wellness. They describe shortages of health care professionals who are willing to accept them as patients and who know how to meet their specialized needs.
US Surgeon General’s Office. (2002): Closing the Gap: Report of the surgeon General’s Conference on Health Disparities and Mental Retardation; p. xi
Community Based Participatory Research
An applied, participatory process that includes collaboration of community agencies, key stakeholders and academic researchers in: Conceptualization Active planning, Implementation, and Evaluation of research.
Goals of CBPR: to influence change in community health, systems, programs and health care policies.
Our Partnership Goals:
To identify and work on programs at KenCrest for unhealthy weight targeting overweight and obesity.
To develop health screening tool for caregivers and care recipients
To achieve foundation funding River Crest Grant to conduct chart review – provide
preliminary data for further study.To apply for federal funding
Overweight/Obesity and I/DD
Consistently report higher rates of obesity in adults with I/DD worldwide when compared to general population (Stedman & Leland, 2010).
Associated with: hypertension, diabetes, dyslipidemia, CAD, stroke, osteoarthritis, sleep disturbances, some cancers.
Those with I/DD at risk for Obesity/Overweight because of:
Genetics: Froelich’s Prader-Willi, Down syndrome (DS) Reportedly 86% of teens with DS are overweight
or obese May store fat differently or have altered nutrient
or energy needs (Humphries, et al, 2009)Gender:
Higher prevalence of obesity among women with I/DD “the gender effect is accentuated, placing women with ID at particular risk.” (Melville et al, 2007 p. 225)
Those with I/DD at risk for Obesity/Overweight because of:
Nutrition – considered vulnerable or at risk for malnutrition according to American Dietetic Association (2004)
MedicationsEnvironmental influences = lack of nutrition
knowledge, limited control over food purchasing, food planning or food preparation; finances.
Physical inactivityLiving arrangements = less restrictive (own
home; family home) = have higher prevalence of obesity
Nutrition and Exercise
Nutritionists have not validated a dietary intake assessment for adults with I/DD because of significant barriers to collecting valid data.
Challenges = problems with memory, comprehension, dexterity, literacy, communication, recording, estimating quantities
Physical Activity guidelines are also lacking in adults with I/DD
National Health Interview Survey (NHIS) (1985-2000)
Annual cross-sectional household interview surveyMeasures = general health status, acute/chronic
conditions, impairment/functional limitations and use of medical services.
Proxy info provided for those not able to respond due to physical/cognitive limitations.
Sample = adults with I/DD in community (own home, family home)
Findings higher % of obese adults with I/DD compared to general population = also reflects an increase in obese I/DD over 16 yr period % overweight is similar in both populations
Overweight and Obesity Among Adults With ID Who Use I/DD Services in 20 U.S. States (2011).
Compared National Core Indicators program of 20 states in 2008-2009 with Natl Health & Nutrition Examination Survey: NHANES (2010)
Findings: those with ID not different than general population i.e. Obesity in NCI sample = 33.6% (represents ~2/3 or 62.2% of sample)
Obesity in US sample = 33.8% Found: higher prevalence of obesity among women
with ID; those with DS and milder ID. Found living arrangements: highest prevalence
among individuals living in own home (42.8%) and lowest among institutional residents (18.6%).
Unhealthy weight
Dec, 2011 = defined for this effort as overweight or obese to be a priority for a first project.
Plan: Meetings with Administrators (4) & Nursing Staff (2);
Literature Review Health Record Review Development of healthy weight screening
instrument.
Unhealthy Weight Screening Tool
People with intellectual and developmental disabilities (I/DD) may be at risk for developing unhealthy weight (i.e. under/overweight or obesity). This tool was developed to assist caregivers in collecting information to be shared with their primary healthcare providers. This is not a clinical assessment tool.
It is recommended that this tool -- Be completed on
an annual basis or as often as needed be completed by someone who knows or works with the person for at least 6 months to a year
References
American Dietetic Association (2004). Position of the ADA: Providing nutrition services for infants, children and adults with DD and special health care needs. Journal of the ADA 104: 97-107.
CDC (NCBDDD) Developmental Disabilities Homepage http://www.cdc.gov/ncbddd/dd/
CDC FASTSTATS: Obesity and Overweight http://www.cdc.gov/nchs/fastats/overwt.htm
Harris, J (2006) Intellectual disability: Understanding its development, causes, classification, evaluation, and treatment. Oxford University Press, Inc New York.
Humphries, K. Traci, M. & Seekins, T. (2009) Nutrition and Adults with Intellectual or Developmental Disabilities: Systematic Literature Review Results. Intellectual and Developmental Disabilities. 47(3): 163-185.
References
Melville, C. Hamilton, S., Hankey, C., Miller, S. & Boyle, S. (2007). The prevalence and determinants of obesity in adults with intellectual disabilities. Obesity Reviews. 8: 223-230
Moran, M. (12/16/11) AMA Says Intellectual Disability Warrants ‘Underserved’ Designation. Psychiatric News (46)24: 8a American Psychiatric Association
Morstad, D. (2012) How prevalent are intellectual and developmental disabilities in the United States? http://bethesdainstitute.org/document.doc?id=413
Stancliffe, R., Lakin, K., Larson, S., Engler, J., Bershadsky, J., Taub, S., Fortune, J. & Ticha, R. (2011) Overweight and Obesity Among Adults With Intellectual Disabilities Who Use Intellectual Disability/Developmental Disability Services in 20 U.S. States. American Journal on Intellectual and Developmental Disabilities. 116(6): 401-418.
References
Stedman, K. & Leland, L. (2010) Obesity and intellectual disability in New Zealand. Journal of Intellectual & Developmental Disability. 35(2);112-115
US census state and county quick facts (2011) at http://quickfacts.census.gov/qfd/states/00000.html
US DHHS (2012) The President’s Committee for People with Intellectual Disabilities. http://www.acf.hhs.gov/programs/pcpid/
US Surgeon General’s Office. (2002): Closing the Gap: Report of the surgeon General’s Conference on Health Disparities and Mental Retardation.
Yamaki, K. (2005) Body Weight Status Among Adults With Intellectual
Disability in the Community. Mental Retardation 43(1): 1-10