Conference
Proceedings of
National
Conference on Disability and Health
Building Bridges for
Science and Consumers
Dallas, Texas, October 14-16, 1998
PREVENTION OF SECONDARY INJURIES AMONG FARMERS WITH DISABILITIES
Tracy Keninger
Objectives: Identify the prevalence of injury among farmers with disabilities compared to non-disabled farmers. Identify the common patterns of secondary injury among farmers with disabilities.
Methods: In this study, 106 active farmers with disabilities served by the Easter Seals Farm Family Rehabilitation Management (FaRM) program and 234 active, able-bodied farmers, matched on farm location and age, were involved in a cross-sectional analysis. The analysis was performed to estimate whether older age alone, the presence of disability alone, or the combination of both factors were associated with farm work-related injuries (FWRI). Telephone interviews to each farmer were conducted.
Results: Individuals experiencing arthritic limitations were most strongly associated with the most severe FWRI. Compared to younger control farmers, older control farmers and both younger and older farmers with disabilities were at less than half the risk of having a FWRI in the previous year. The older control farmers and both younger and older farmers with disabilities experienced less time on the farm compared to the younger control farmers, however, their decreased time and exposure did not appear to fully account for the "protective effect" of the older age or disabled farmer.
Conclusion: Farmers with disabilities were served by FaRM program staff and were provided with consultation, adaptive equipment, and literature discussing safety tips for the prevention of secondary injuries. This is a strong indicator as to why the farmers with disabilities were at lesser risk of secondary injuries.
Public Health Implications: More programs such as the Easter Seals FaRM program are needed to educate farmers with disabilities on the safety issues involved with farming with a disability in order to prevent secondary injuries.
For more information: essia@netins.net
WHEELCHAIR ACCESSIBILITY - LIVING THE EXPERIENCE
Linda McClain
Objectives: The purpose of this study was to describe and interpret the perspectives of persons who use wheelchairs about the impact of architectural accessibility in their lives.
Methods: Employing naturalistic inquiry and purposive sampling (based on the variable of age), the investigators invited three individuals to participate in in-depth interviews. Lincoln and Guba's (1985) model was used, employing three distinct phases of data collection and analysis. Analysis and interpretation followed the methods utilized to establish trustworthiness of the findings (credibility, transferability, dependability, and confirmability).
Results: The emerging themes included: 1) Lack of awareness of ADA Standards; 2) ADA Standards and non-compliance; 3) Accessibility issues beyond the ADA; 4) Attitudes and feelings; 5) Safety issues; 6) Expenses of mobility; 7) Effects of accessibility on social roles, relationships, and decision-making.
Conclusion: Although the physical environment continues to impose restrictions upon persons in wheelchairs as they access the goods and services they want and need, these participants were very unaware of their rights under the ADA. Accessibility issues additionally impacted these participants' personal relationships and finances.
Public Health Implications: Often a critical variable when working toward functional independence within community settings is the challenge imposed by physical environmental barriers. It is crucial that health care providers become diligent in their efforts to educate and empower their consumers about their civil rights as defined by the Americans with Disabilities Act of 1990. The impact of architecturally imposed isolation upon the lives of individuals who use wheelchairs merits further study.
For more information: lmcclain@unm.edu
FAMILY-CENTERED ENHANCEMENT TO PROMOTE MENTAL HEALTH FOR YOUNG CHILDREN WITH DEVELOPMENTAL DELAY
Suzanne McDermott, Ph.D., Richard Nagle, Ph.D., Harry Wright, M.D., Tami Leonhardt, Ph.D., Don Wuori, M.D.
Objectives: To determine the effectiveness of an early intervention strategy to prevent the onset, or limit the severity, of behavior problems in young children with developmental delays who are in treatment in Pediatric Rehabilitation clinics.
Methods: Children under age 3 who are receiving PT, OT or Speech Therapy are eligible for enrollment in the project if they have a diagnosis of developmental delay and the therapists have observed behavior problems. After giving obtaining informed consent, families have an in-home assessment of the child's cognitive and adaptive functioning, behavior problems, and to assess the family stresses and coping strategies. This assessment is repeated at 6-month intervals. The intervention is monthly consultations by a team of a developmental physician or psychiatrist, psychologists and a preventive medicine specialist. The hour long consultations advise and support therapists efforts to prevent or reduce the severity of behavior problems. The rehabilitation therapists also receive in-service training on normal and abnormal development and behavior strategies.
Results: Preliminary results suggest that training needs of therapists can be successfully addressed through a mental health consultation model. Interventions can reduce the frequency and intensity of maladaptive behaviors.
Conclusions: Therapists and parents are receptive to the model which reduces the number of appointments that families might need to address common behaviors and family issues.
Public Health Implications: For over 20 years parents, practitioners and researchers have reported a strong association between developmental delays and behavior problems. This research is testing the effectiveness of a cost effective, non-intrusive model to prevent problem behaviors in young children with lifelong disabilities.
For more information: SMCDERMOTT@fpgw.rmh.edu
RELATION OF BRFSS LEARNING DOMAIN QUESTION 8 TO OTHER BRFSS LEARNING DOMAIN QUESTIONS
Suzanne McDermott, PhD, and Brian R. Gray, MS.
Objectives: To better define the "learning, remembering and concentrating" concept (hereafter "learning concept") in the Behavioral Risk Factor Surveillance System (BRFSS) Quality of Life module.
Method: We assessed the relationship between the learning concept and the responses from the following BRFSS questions: status of general health, days during past month in which mental health not good, activities limited due to general health problem, specific health problem which limits activities (M2), [F&PM1][F&PM2]days during past month depressed, days during past month felt anxious, and BRFSS-reported age, race, education and gender. All multilevel responses were dichotomized prior to analysis for significant odds ratios (OR, (=0.05). ORs were adjusted for age ((65 yr) when the OR changed (10% in the presence of age. All analyses were performed on 1998 (Jan-Apr) unweighted SC BRFSS data.
Results: Approximately 9% of BRFSS respondents (95 of 1078 respondents) reported a learning problem. Only 56% of those with a learning problem identified the health problem or impairment underlying the learning problem. This number was largely composed of back, neck, bone fracture and arthritic problems (36%), lung and heart problems (15%) and "other" (23%); mental problems comprised only 6% of cases). earning problems were significantly associated with reporting fair or poor general health (OR 5.85; 95% CI: 3.87, 8.84), with reporting 6-30 days mental health not good (OR 5.32; 3.26, 8.67; adjusted for age), and with an activity limitation due to a general health problem (OR 6.92; 4.63, 10.34). Learning problems were also significantly associated with being depressed 6-30 days in the previous month (OR 4.44; 2.87, 6.87), with being anxious 6-30 days in the previous month (OR 3.87; 2.42, 6.19; adjusted for age), with being senior ((65 yr, OR 2.06; 1.28, 3.32), and with not being a high school graduate (OR 2.66; 1.71, 4.16). Reporting a learning problem was not significantly associated with race (OR 1.01; 0.62, 1.66) or with gender (OR 0.91; 0.59, 1.40).
Conclusions: Learning concept was substantially associated with mental status and with perception of general health.
Public Health Implication: The BRFSS question related to learning domain disability appears sensitive but not specific to individuals with mental impairments. If learning domain disability is to be measured by the BRFSS, a more specific question should be added.
For more information: SMCDERMOTT@fpgw.rmh.edu
QUALITY OF LIFE IN CHILDREN & YOUTH WITH SPINA BIFIDA
Janey S. McMillen, Ph.D., Rune J. Simeonsson, Ph.D., M.S.P.H., & Gail S. Huntington, Ph.D.
Objectives: The purpose of this study was to examine quality of life in 153 children and youth with spina bifida, with particular attention to intrapersonal and family factors, which may impact their quality of life.
Methods: The study design includes 40 subjects in each of four age groups - birth - 5; 6 - 12; 13 - 17; and 18 - 35 years. Currently, there are 153 subjects participating. A battery of measures was obtained examining child characteristics, child and family functioning, and aspects of the environment.
Results: Children and adolescents with spina bifida rate their quality of life (QOL) from 'fair' to 'excellent', with most rating it 'good'. Families are less likely to perceive their child's QOL as 'fair' (0-11%) and more likely to perceive it as 'excellent' (11-43%). Children are more likely to perceive their QOL as 'fair' (10-25%) and less likely to perceive it as 'excellent' (0-29%). Overall, there was a 50% correspondence between child and family ratings of QOL; 35% of the time families rated their child's QOL more favorably, and for 16% of the time, children rated their own QOL as more favorable than did their families.
Conclusion: Children and adolescents base their perceptions of QOL on the provision of accessibility and participation, and on a sense of acceptance, identity, and dignity. Families base their ratings of QOL on the provision of a nurturing environment and accessibility, and a sense of control, identity, and well-being.
Public Health Implications: Policy implications include a need to further develop and refine the measurement of quality of life in children in order to enhance its usefulness as an outcome measure of interventions, programs, and policies.
For more information: mcmillen@mail.fpg.unc.edu
WOMEN WITH MOVEMENT LIMITATIONS: APPROACHING THE 21ST CENTURY
Melnikova Natalia, M.D., Ph.D., Lollar, Donald J., Ed. D.
Objective: To estimate the prevalence of movement limitations among the female population of the United States; to describe the main characteristics of women with movement limitations; and to identify strategies to improve the status of this category of USA population.
Methods: The study used the Third National Health and Nutritional Examination Survey, 1988-94 (NHANES-III) to estimate the prevalence of movement limitations among the non-institutionalized U.S. female population. The definition of "movement limitations" was based on International Classification of Impairments, Disabilities, and Handicaps (ICIDH-2, June, 1997, Beta-1 Draft). We used the statistical software package SPSS to analyze the relationship between the prevalence of movement limitations among men and women and place of residence. We also analyzed the educational, marital, and income status, and the medical coverage of men and women with and without movement limitations, according to age and ethnicity.
Results: Movement limitations are most common among white women, especially those of early menopausal age. Severe movement limitations are most common among women who live in rural areas, compared to urban. The educational level of women with movement limitations is significantly lower than that of women without movement limitations. Ninety percent of those who never attended school and were unable to move are minorities. Women with movement limitations are twice as likely to be under the poverty level as men with movement limitations, and three times as likely as women without movement limitations. Rates of poverty among women with this kind of disability also associated with marital status: 90% of single women with severe movement limitations live in poverty. Most of them are minorities. Ten percent of women with severe movement limitations do not have any medical coverage.
Conclusions: The health of a society is reflected in part by how the society regards women with disabilities. Women with movement limitations continue to be one of the most disadvantaged groups in our society. The collaborative efforts of social, educational, health promotional, and clinical preventive services are needed in order to develop the preventive strategies to improve this situation.
For more information: nbm6@cdc.gov
AGING WITH A DISABILITY: EARLY ONSET OF UNEXPECTED MEDICAL PROBLEMS
Laura Mosqueda, Bryan Kemp, Margaret Campbell
Objectives: To discover if people who age with a disability encounter new medical problems at an earlier age than their non-disabled counterparts. Methods Over 1000 people with a disability were studied between 1988 and 1998. Impairment categories included cerebral palsy, post polio, rheumatoid arthritis, spinal cord injury, and stroke. Laboratory tests including pulmonary function, thyroid function, and fasting blood glucose levels were performed. The study group (SG) analyzed below reflects a subset of people between the ages of 25 and 64 years of age (n=480).
Results: Several diseases emerged as being significantly more common in people who are aging with a disability than in the general age-matched population (GP). In the GP the prevalence of asthma is 5.1% (vs 14.1% in the SG) and of emphysema is 1.0% (vs 10.2% in the SG). The prevalence of diabetes is 6.3% in the GP (vs 19.7% in the SG). Thyroid disease has a prevalence of 3.0% in the GP (compared to 12.3% in the SG).
Conclusion: As people age with a disability they are at risk for developing new medical problems at an earlier time than their non-disabled peers. Some of the interacting factors contributing to this include: less physiologic reserve, sedentary lifestyle, and normal aging.
Public Health Implications: All of the diseases described above can be minimized in terms of their impact on health and functional status if recognized early and treated appropriately. We fear, however, there is a tendency among health care providers and consumers to assume that new symptoms (such as fatigue) are a normal part of aging with a disability and therefore the treatable etiology (such as hypothyroidism) are left undiscovered. An educational campaign and further research are underway to inform the public and find solutions to this problem.
For more information: mosqueda@uci.edu
INCLUSION FOR YOUNG CHILDREN: A SURVEY OF CHILD CARE PROVIDERS AND PARENTS
Beverly A. Mulvihill, Ph.D., Darlene Shearer, MPH, RN, M. Lee Van Horn
Objective: To determine attitudes, concerns, resources, and training and technical assistance needs of families and child care providers related to the inclusion of children with disabilities in child care.
Methods: A survey was mailed to 4600 center and family child care providers; about 1,000 responded to date. In addition, 2200 parents were asked about issues related to their seeking child care; 740 parents have responded. Descriptive analyses were conducted and the Chi Square test was applied to determine differences in the responses of the center and home providers.
Results: Among the child care providers, concern was greatest about hiring more staff and changing their physical environment. Staff issues were of more concern for centers (p=.005); environmental for home providers (p=.008). Few child care staff had inclusion training, however, the barriers to inclusion diminished when staff were trained. Among the parents, 60% did not use regular child care and 15% said the reason was that the workers did not have training in caring for children with disabilities. In addition, 26% reported that when they tried to get regular child care they could not; 19% said that child care programs would not accept a child with a disability.
Conclusion: Child care providers need training to increase their skill and knowledge in serving children with disabilities and their legal obligations under ADA. Dialogue is needed between parents of children with disabilities and child care providers to increase an understanding of mutual concerns.
Public Health Implications: The data in this study suggest that without additional support providers' ability to serve children with disabilities will be compromised. Federal laws and policies are encouraging the implementation of inclusive practices, but the needed support at the practical level is lacking.
For more information: bmulvihill@civmail.circ.uab.edu
HEALTH BEHAVIORS OF NORTH CAROLINA ADULTS WITH AND WITHOUT DISABILITIES: PRELIMINARY RESULTS FROM THE 1998 BRFSS
Kristi Passaro, Marcia Roth, Lauren McDevitt, Donna Scandlin, Harry Herrick, and Carol Potter
Objective: The objective of this study was to describe the health behaviors and preventive health practices of North Carolina adults with and without disabilities.
Methods: We analyzed preliminary data from the 1998 North Carolina Behavioral Risk Factor Surveillance System (BRFSS). Survey respondents reporting any type of disability were compared with those reporting no disability on a variety of lifestyle behaviors and cancer screening practices. The characteristics of subgroups of adults with disabilities were also compared.
Results: Approximately one third of North Carolina adults report having some type of disability. North Carolina adults with disabilities are slightly more likely than those with no disabilities to be current smokers and to be overweight. They are also about 30% more likely to report engaging in no leisure-time physical activity. In general, North Carolina women with disabilities report lower rates of breast cancer screening procedures and of recent cervical cancer screening. In contrast, adults with disabilities are somewhat more likely to have been screened for colorectal cancer. Differences among subgroups of adults with disabilities were also noted.
Conclusions: North Carolina adults with disabilities are somewhat more likely than those without disabilities to engage in unhealthy behaviors, and women with disabilities are less likely to receive regular breast and cervical cancer screening.
Public Health Implications: Researchers should identify barriers to the receipt of clinical preventive services among adults with disabilities, as well as encourage the adoption of healthy lifestyle practices (e.g., through the provision of preventive counseling) by these adults.
For more information: kristi_passaro@mail.ehnr.state.nc.us
WELLNESS FOR WOMEN WITH POLIO: A HOLISTIC PROGRAM MODEL
Sunny Roller, M.A. and Denise G. Tate, Ph.D.
Objectives: The aim of this 3-year clinical trial is to develop, implement, and test the effectiveness of a cognitive wellness program for women with chronic neuromuscular mobility impairments who are at risk for developing disabling secondary conditions.
Methods: Using a randomized block design to control severity of disability, 200 subjects ages 41-69 were randomly selected from a pool of women with a history of paralytic polio who live in southeastern Michigan/northwestern Ohio. The intervention consisted of 4 bi-weekly classes on stress management, nutrition and exercise with an individualized feedback session 2 weeks after the conclusion. Baseline data on functional status, nutritional awareness, and stress management were collected through a physiological exam and series of questionnaires. Post-tests were conducted using the same clinical and self-assessment-based data both 10 weeks (2 weeks after the experimental subjects completed the intervention) and 6 months later. A randomized block, repeated measures ANOVA design is being used to assess the program's immediate and long-term impact on wellness.
Results: Initial results indicate an increase in health behaviors and in overall optimism 2-weeks post-intervention for program participants when compared to controls.
Conclusion: Positive health behaviors and overall sense of well-being occurred as a result of exposure to an 8-week wellness program. Additional data regarding participants' physiological, functional and psychological change is currently being collected and analyzed. These will be presented at the conference.
Public Health Implications: Results of this study may be used as a basis for designing community-based wellness programs that lead to a decrease in secondary conditions and hence, the improved health, function and well-being of people who are growing older with physical disabilities.
For more information: elsol@mailgw2.pmr.med.umich.edu
MOVING A STATE HEALTH AND DISABILITY AGENDA FORWARD: A PRACTICE-BASED MODEL
Donna Scandlin, Marcia Roth, Karin Bryant, and Lauren McDevitt
Objectives: The purpose of this poster presentation is to describe policy and program activities undertaken to move the health and disability agenda forward in North Carolina. Activities began with the development of a consensus-based, five-year state plan for the prevention of secondary conditions and the promotion of health among persons with disabilities. This blueprint outlined four areas of focus: health promotion and wellness, access to health care, information resources and social support, and research and surveillance. Planning, program initiatives, materials development, and collaborative partnerships were formed to meet objectives in these focus areas. Three specific program and policy initiatives will be discussed to illustrate how this development of a health and disability agenda occurred: women's health, physical fitness and recreation, and transitions to adulthood.
Conclusions: This agenda has followed a three-pronged approach: 1) identification of opportunities in the state health department for integrating a disability focus into already defined priorities; 2) work in the disability community to encourage health promotion and the formation of nontraditional partnerships and collaborations; 3) and the translation of research findings into practice.
Public Health Implications: Models of health promotion for people with disabilities do not currently exist within the public health community at the state or local level. Our experience will provide an example of one state's approach to addressing the challenge of developing and moving a disability agenda forward in a public health context. As more states become involved in health promotion activities, information exchange related to effective approaches, methods, and models will become necessary.
For more information: scandlin@mail.fpg.unc.edu
UTILIZATION OF CLINICAL PREVENTIVE SERVICES: DIFFERENCES BETWEEN PERSONS WITH AND WITHOUT DISABILITIES.
Mario Schootman, Ph.D.
Objectives: To assess differences in the use of screening services (hypertension, cholesterol, mammography, clinical breast examination, Pap smears, and proctoscopy) between persons with and without disabilities.
Methods: We used the 1995-1997 Iowa weighted Behavioral Risk Factor Surveillance System data to classify disability into severe, moderate, and no limitations of activities. Screening adherence was defined according to the recommendations of various national organizations. SUDAAN's multiple logistic regression was used to calculate the likelihood of the use of clinical preventive services while controlling for demographic characteristics.
Results: Those with severe disabilities were more likely to have been screened for hypertension, cholesterol, and colorectal cancer, but were less likely to have been screened for breast cancer relative to those without disabilities. No difference was found for cervical and colorectal cancer screening.
Conclusions: Those with severe disabilities were less likely to be screened for breast cancer, the second leading cause of cancer deaths in Iowa women.
Public Health Implications: Disparities in screening for breast cancer still exist among Iowa women and need to be investigated. Healthy Iowans 2010 may need to address this issue.
For more information: mschootm@idph.state.ia.us
DISABILITY FROM STROKE AND TRAUMATIC BRAIN INJURY IN THE AGING POPULATION OF SOUTH CAROLINA, 1991 THROUGH 1996
Anbesaw W. Selassie, Dr. PH; Ernest P. McCutcheon, MD, MPH, Leroy Frazier, Jr., MSPH
Objectives: To determine the magnitude of disability resulting from stroke and traumatic brain injury (TBI) in the elderly population of South Carolina.
Method: We identified 42,463 and 2,146 unduplicated statewide hospital discharges due to stroke and TBI respectively among elderly residents (ages(65) from 1991-1996. Discharges were ascertained as cases with ICD-9-CM codes 800,801,803,804,850-854 for TBI and 430-437 for stroke. We generated Abbreviated Injury Scale (AIS) from a computerized ICDMAP (1990 version) program for TBI. A three-level outcome scale - very likely, likely, and unlikely - was derived using an algorithm that included severity, types of lesion, and discharge disposition. Annualized discharge rates were adjusted to the 1980 census population.
Results: For stroke-related disability, the annualized age-gender-race adjusted rate among the elderly is 1,321/100,000 population while for the rest of the population the rate is 80/100,000. For TBI-related disability, the adjusted rate is 44/100,000 among the elderly while the rate for the rest of the population is 27/100,000 per year. The overall rate of disability due to the combined effect of TBI and stroke is 13 times higher among the elderly (1,365/100,000) than in the rest of the population (106/100,000).
Conclusion: We noted highly significant difference in the rate of disabling TBI and stroke in the elderly population of the state. The differences were particularly wide with increasing age. Elderly who succumb to this type of disability require specialized care for the rest of their lives.
Public health implication: The increasing rate of disability due to stroke and TBI in the elderly population is a major public health concern in the presence of a steady increase in the aging population.
For more information: aselassie@fpgw.rmh.edu
STATE OF ALABAMA STATE CAPACITY PROJECT FOR ASSESSING AND PREVENTING SECONDARY CONDITIONS
Shearer, David, Maddox, Catharine A., Ramey, Craig T., Shearer, D, & Mulvihill, B.
Objectives: To expand the state's epidemiological capacity to determine the magnitude and nature of disability and secondary conditions, and to develop and implement plans and programs for the prevention of secondary conditions and fostering health promotion in persons with a disability in the learning domain.
Methods: Using a broad-based, multi-agency approach, these include surveillance efforts guided by a statewide surveillance committee and the creation of a highly visible program for the planning and implementation of prevention strategies and health promotion efforts.
Results: Some representative results of projects performed have identified the at-birth predictors of a diagnosis of mental retardation, the life span prevalence of mental retardation, and the relationship of race and other factors to a school diagnosis of mental retardation. The latter finding has led to a restructuring of the state education agency's assessment process. Ongoing studies are examining the quality of life and service utilization status of former special education students, the prevalence of several learning domain-related disabilities other than mental retardation, and the factors associated with child referrals to the state mental retardation agency.
Conclusion: This broad-based collaborative process has already produced results, and holds great promise for the further development of effective prevention strategies in Alabama.
Public Health Implications: This effort is providing for a greater understanding of the prevalence of disabilities in Alabama and the major secondary conditions associated with them. The foundation for an effective prevention program, as well as a program for fostering health awareness and improvement, is being established.
For more information: eshearer.civitan@civmail.circ.uab.edu
SECONDARY CONDITIONS IN CHILDREN & YOUTH WITH SPINA BIFIDA: A DEVELOPMENTAL PERSPECTIVE
Rune J. Simeonsson, Ph.D., M.S.P.H., Gail S. Huntington, Ph.D., & Janey S. McMillen, Ph.D.
Objectives: A longitudinal study designed to: 1) document the morbidity and consequences of spina bifida; 2) examine mediating factors; and 3) identify risk and resilience factors.
Methods: The study design includes four age groups: birth - 5; 6 - 12; 13 - 17; and 18 - 35 years. There are 153 participants in the study. A battery of measures documented demographic and medical data, and child and family functioning.
Results: Documentation of secondary conditions was based on the Impairment, Disability and Handicap codes of the ICIDH. The most prevalent secondary conditions were bowel (64%) and bladder (55%) incontinence, followed in descending order by latex allergy (42%), balance problems (41%), weight problems (41%) and pain (36%). Skin breakdown and weight showed a developmental trend. The most prevalent Disabilities reported were difficulty in math (53%), problem solving (49%), and endurance (42%), followed in descending order by learning/ attention (32%), social skills (26%), and reading (22%). Social skills (8% to 38%), learning/attention (31% to 45%), and problem solving (38% to 50%), showed a developmental trend. The most prevalent Handicap codes were exclusion (45%), isolation (37%), family stress (33%), and mobility (23%), with mobility revealing a developmental trend.
Conclusion: The findings underscore the importance of documenting life experiences and adaptation from both child and family perspectives. On measures of adaptation, parents rated level of independence higher than children except in the areas of social integration, awareness of surroundings, and economic self-sufficiency.
Public Health Implications: A major goal of this effort is to identify risk and resilience factors for the development of community based health programs to prevent secondary conditions and promote health in children with disabilities and their families.
For more information: mcmillen@mail.fpg.unc.edu
PEER COUNSELING FOR PRESSURE SORE PREVENTION: THE PEER INFORMATION NETWORK (PIN) STUDY
Larry Steele, Martin Ferguson-Pell, Theresa Paeglow, Frances Stevens, Kimberly Davis
Objectives: Using peer counseling techniques, demonstrate a reduction in both pressure sore (PS) incidence and severity among persons with spinal cord injury (SCI). Secondarily, examine the relationships between psychosocial factors and PS incidence among these subjects.
Methods: Beginning in 1995, the New York State Department of Health cooperated with six independent living centers (ILCs) to evaluate the effectiveness of peer counseling in preventing PS recurrence among high-risk persons with SCI. Eligible volunteers were randomly assigned to intervention (peer counseling, n=28) and control (usual care, n=28) groups and followed for 12 months. Risk factor status and psychosocial measures were assessed at baseline and end of follow-up. PS experience was self-reported by subjects through submitted diaries.
Results: Results showed little group difference in either the proportions reporting at least one PS or severity of the PSs experienced. However, substantially more control subjects reported multiple PS occurrence than did intervention subjects (46.4% versus 35.0%, respectively). Moreover, active intervention appeared to be effective in delaying the first PS episode. A multivariate logistic regression, controlling for risk and psychosocial factors, showed the control group to be at three-fold greater risk for multiple PS occurrence. In addition, subjects with lower self-esteem were at higher risk of both multiple PS occurrence and new PS occurrence.
Conclusion: The results support the effectiveness of peer advisement as a supplement to usual medical treatment in preventing PS occurrence among persons with SCI.
Public Health Implications: This study offered a valuable perspective on how to effectively conduct community-based participatory studies, especially in collaboration with ILCs.
For more information: lls02@health.state.ny.us
BARRIERS TO HEALTH PROMOTION FOR WOMEN WITH MULTIPLE SCLEROSIS
Alexa Stuifbergen, PhD, RN, FAAN; Heather Becker, PhD
Objectives: Barriers to engaging in health promoting behaviors may arise from the environment, interactions with others, and from one's internal cognitions. The purpose of this study was to describe the perceptions of women with multiple sclerosis (MS) regarding the unavailability, inconvenience, or difficulty of engaging in actions to promote and maintain their health.
Methods: Data were collected using a mailed survey from a sample of 645 women with MS as part of a larger study of health promotion and quality of life in chronic illness. The questionnaire included the Barriers to Health Promotion Behaviors Scale, an 18-item summated rating scale. Participants rated each item on a four-point scale, indicating how frequently the problem kept them from taking care of their health. Other measures including The Health Promoting Lifestyle Profile II, The Quality of Life Index, The CESD-10, and the Personal Resource Questionnaire. The sample had a mean age of 47.34 and had been diagnosed for an average of 10 years. The majority were white (92%), married (70%), unemployed (61%), and had completed high school (93%).
Results: The most frequent barriers identified by these women were fatigue (M=2.08), their impairment (M=2.13), lack of money (M=2.12), lack of time (M=2.72) and other responsibilities (M=2.04). Total scores on the Barriers Scale were significantly associated with scores on the measures of depression (r=.53), health promoting behaviors (r=-.38, perceived health (r=-.47), social support (r=-.46) and perceived quality of life (r=-.63).
Conclusions: Perceptions of barriers had a moderate to strong relationship with the practice of health behaviors and the outcomes of perceived health and quality of life. Rankings of barriers reflect the influence of the chronic disabling condition as well as the general characteristics of the lives of these women.
Public Health Implications: Intervention programs aimed at decreasing barriers to health promotion and thereby increasing health promoting behaviors may not only enhance quality of life for the individual but ultimately reduce the incidence of secondary disabilities and overall costs of health care for persons with chronic disabling conditions.
For more information: astuifbergen@mail.utexas.edu
AN INTERVENTION TRIAL TO PROMOTE HEALTH AMONG INDIVIDUALS WITH LEARNING DOMAIN DISABILITIES
Marlo Thomas-Koger, M.P.H., Wendy Whitner, M.P.H., Marcia Kelly, M.A., Suzanne McDermott, Ph.D., Gary Ewing, M.D., M.P.H.
Objectives: To investigate the effectiveness of a minimal intervention designed to reduce cardiovascular risk factors among individuals with learning domain disabilities (LDD).
Methods: The secondary conditions specifically targeted include obesity, dyslipidemia, and hypertension, which are established risk factors for cardiovascular disease. The health promotion program emphasizes lifestyle modification for individuals with LDD compared to individuals with normal cognitive functioning (NCF). Patients believed to be at risk are referred to the Preventive Medicine Clinic or are recruited through local Department of Disabilities and Special Needs Boards. Study activities include baseline and follow-up assessments of health status and knowledge, behaviors, and attitudes toward nutrition, exercise, and stress. There are two intervention strategies for both groups: eight weekly group meetings and a combination of eight weekly group meetings and four bi-weekly home visits. Program effectiveness is determined by comparing pre/post-intervention measures which include the questionnaires and health risk profiles.
Results: Preliminary results suggest that risk factors for cardiovascular disease can be prevented or reduced in LDD participants if they are equipped with concrete lifestyle modification techniques.
Conclusion: Individuals with LDD are willing to make changes in their exercise habits and diet plan if those changes are conducive to their lifestyle.
Public Health Implications: Secondary conditions are amendable through life-style intervention techniques. This study will help to determine how well LDD patients respond to health promotion efforts to prevent or reduce risk factors for cardiovascular disease.
For more information: mkoger@fpgw.rmh.edu
CLARIFYING CHOICES: TOWARD EMPIRICALLY DERIVED STANDARDS FOR HEALTH PROMOTION OF INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES
Meg Ann Traci, M.A., Ann Szalda-Petree, Ph.D., Tom Seekins, Ph.D., Craig Ravesloot, Ph.D.
Objectives: The overall goal of our program is to develop and test a community systems model for reducing limitations due to secondary conditions and promoting the health of adults with developmental disabilities. This is being accomplished partially through the development and field testing of a surveillance, risk assessment, and protective factors instrument for assessing the prevalence and severity of secondary conditions experienced by adults with D.D. in the state of Montana. Data will be used to generate a computer program for eliciting health behavior choices from consumers. Information from the initial pilot studies of this survey instrument will be presented.
Methods: Surveys were sent to 16 corporations for direct care provider staff to complete for group home residents. 277 surveys were returned.
Results: Results indicate that the 5 most problematic secondary conditions experienced by adults with developmental disabilities living in group homes in Montana are: physical fitness and conditioning problems (59%), communication difficulties (57%), problems with mobility (51%), persistence/low frustration tolerance problems(50%), weight problems (48%).
Conclusion: The five most problematic secondary conditions for consumers can be addressed within a health and wellness behavioral framework, pointing to interventions involving choices made by consumers.
Public Health Implication: Prevention is a useful tool for reducing and managing secondary conditions for adults with developmental disabilities. However, for preventive strategies to be helpful, consumers must choose to use them.
For more information: matraci@selway.umt.edu
A MAIL SURVEY OF HCBS PHYSICAL DISABILITY WAIVER PARTICIPANTS REGARDING HEALTH OUTCOMES
Glen W. White Ph.D., Dorothy E. Nary, B.A., & Nancy Scott, LBSW
Objectives: The object of this study is to learn about the health status of participants with physical disabilities enrolled in the Physical Disability Waiver program under Home and Community Based Services in Kansas. The program allows participants to spend Medicaid dollars for self-care activities in the community if these services cost less than the dollar amount for institutional services. Researchers will use the incidence and severity of secondary conditions and the number of Medicaid-covered health services used by participants as measures of health outcomes. Comparisons will be made between: 1) pre and post-waiver incidence of secondary conditions and service use; 2) those with third party coverage in addition to Medicaid and those who are covered only by Medicaid; 3) those who direct their own personal care and those who use agency-directed personal care; and 4) those who have greater access to assistive technology and those who have less access.
Methods: Researchers compiled a 19-item questionnaire addressing a variety of health-related topics, including the respondents' general perception of their health, satisfaction with personal assistance services, activity limitations, incidence of secondary conditions, and use of medical services. Feedback from a focus group of 12 Physical Disability Waiver participants was incorporated into the questionnaire, which was then mailed to 2140 participants enrolled in the Physical Disability Waiver Program.
Results: Completed surveys were received from 1180 respondents for a response rate of 55%. Preliminary analysis of this data provides information regarding the effectiveness of this waiver as measured by the four comparisons described above, and in terms of participants' personal perceptions about their health outcomes.
Conclusion: Consumer-directed personal assistance services and Home and Community Based Service waivers are important trends in service provision to numerous populations in most states. This study assess the effects of the Physical Disability Waiver in the state of Kansas in the area of health outcomes for this group of persons with disabilities. [Note: Since this analysis is still "in process" we do not yet have final results or conclusions.]
Public Health Implications: The Kansas PD waiver program promotes community living over institutions, more individualized services, increased empowerment of consumers though the ability to hire and train their own care providers, and the potential for increased access to assistive technology. All of these components can contribute to the health of persons with physical disabilities.
For more information: glen@kuhub.cc.ukans.edu
FINDINGS ON SMOKING BEHAVIOR AND EFFORTS TO ADDRESS TOBACCO USE AMONG INDIVIDUALS WITH DISABILITIES IN MASSACHUSETTS
Nancy Wilber EdD, Deborah Allen ScD, Allan Meyers PhD, Ken MacDonald BS
Objectives: To describe smoking behavior of persons with disabilities compared to the general population; to characterize patterns of smoking behavior among persons with disabilities; to assess the applicability of available data sources on smoking behavior to design of interventions.
Methods: Massachusetts BRFSS data were analyzed to compare smoking use by individuals who report activity limitations with that of other adults. Massachusetts' Secondary Conditions Survey was analyzed to compare smokers and nonsmokers with disabilities and to assess smoking among different demographic subgroups within the disability population.
Results: After age adjustment, people who report limitations and need assistance with routine or personal activities, are 65% more likely to smoke than people who do not. Among adults with disabilities, smoking varies by duration and type of disability as well as age, sex and income. Among persons with disabilities, smoking is associated with more days of restricted activity, more secondary conditions, and worsening health compared to prior year.
Conclusion: Current surveys can be used to assess and characterize smoking behavior among people with disabilities for program planning purposes.
Public Health Implications: Prior to analysis of these data, DPH had allocated funds from the state's Tobacco Control Program to a small project targeting youth with disabilities. While this project was successful, data indicate the elevated vulnerability of individuals with disabilities, and particular subgroups within the overall disability population, to tobacco-related impairment. This suggests the need for more and more targeted efforts at prevention and cessation of tobacco use.
For more information: nancy.wilber@state.ma.us
Last reviewed November 14, 2005