Interventions to promote health: Crossing networks of intellectual and developmental disabilities and aging

Interventions to promote health: Crossing networks of intellectual and developmental disabilities and aging

Disability and Health Journal 7 (2014) S24eS32 www.disabilityandhealthjnl.com Review Article Interventions to promote health: Crossing networks of i...

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Disability and Health Journal 7 (2014) S24eS32 www.disabilityandhealthjnl.com

Review Article

Interventions to promote health: Crossing networks of intellectual and developmental disabilities and aging Tamar Heller, Ph.D., Dora Fisher, M.P.H.*, Beth Marks, Ph.D., and Kelly Hsieh, Ph.D. Department of Disability and Human Development, University of Illinois at Chicago, USA

Abstract Background: People with intellectual and developmental disabilities experience lower levels of healthy behaviors as do older persons, making health promotion a key priority for these populations. Objective: The aim of this paper is to review the two fields of developmental disability and aging health promotion research in order to understand strategies used by both and to identify emerging and innovative practices that disability researchers can learn from each other. Methods: We conducted scoping reviews of health promotion intervention peer reviewed articles in English from 1991 to 2011 for intellectual and developmental disabilities and from 2007 to 2011 for the more extensive gerontological literature. Two reviewers extracted data. Results: The disability review identified 34 studies and three main types of interventions: exercise, multi-component, and health screens. The aging review identified 176 articles which had a wider variety of intervention topics and techniques, with more articles including innovative approaches to bringing interventions to community settings across a wider variety of populations. Conclusions: As people with intellectual and developmental disabilities are living longer, disability health promotion can look to the aging literature for ideas to incorporate in future interventions for people with intellectual and developmental disabilities, while the gerontological research can learn from the research in intellectual and developmental disabilities on ways to adapt health promotion interventions to people with cognitive and physical limitations. Use of universal design principles could enable greater inclusion of people with disabilities in health promotion interventions for the general aging population. Ó 2014 Elsevier Inc. All rights reserved. Keywords: Health promotion; Older adults; Intellectual disabilities; Aging; Developmental disabilities

Adults with intellectual and developmental disabilities, defined as having three or more functional or mental limitations with the onset from age 22 or earlier or having an intellectual disability,1 are living longer than in previous generations. However, they often experience poorer health and earlier onset of age related conditions2 due to issues related to access to care and biological and lifestyle factors.3 Adults with intellectual and developmental disabilities, who make up an estimated six million people in the American population, experience osteoporosis and

This document was produced under grant number H133B080009 awarded by the U.S. Department of Education’s National Institute on Disability and Rehabilitation Research to the Rehabilitation Research and Training Center on Aging with Developmental Disabilities e Lifespan Health and Function at the University of Illinois at Chicago. The contents of this article do not necessarily represent the policy of the U.S. Department of Education, and should not be assumed as being endorsed by the U.S. Federal Government. * Corresponding author. Department of Disability and Human Development, University of Illinois at Chicago, Room 436, 1640 W Roosevelt Rd, Chicago, IL 60608, USA. Tel.: þ1 312 413 1647. E-mail address: [email protected] (T. Heller). 1936-6574/$ - see front matter Ó 2014 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.dhjo.2013.06.001

diabetes at an earlier age than the general population, along with higher levels of obesity, in part due to poor access to health promotion activities, disease prevention services, and health behaviors.4,5 Various studies report low levels of physical activity, poor fitness, poor nutrition, and a higher risk of falls among adults with intellectual and developmental disabilities.6e8 A review examining physical activity in this population found that only between 17.5% and 33% of adults with intellectual and developmental disabilities engage in the standard recommended amount of physical activity.9 In addition they experience greater health disparities in part due to lack of preventive health screenings.10 Hence, as for the general population, promoting good health behaviors is a key priority for this population. Yet, research on effective ways to promote their health is fairly limited. Older adults also experience low levels of healthy behaviors. About 28%e34% of adults age 65e74 and 35%e44% of adults age 75 or older are inactive.11 In recognition of this growing concern, health promotion for older adults is a comprehensively researched field with a wide range of interventions that have been well documented for decades.

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Learning from the strategies employed by the gerontological field will become more important in disability scholarship. And conversely, as this population represents a growing segment of the aging population, understanding underlying philosophies in disability scholarship will support gerontologists in developing culturally relevant interventions. In order to synthesize the health promotion research in the two research areas of intellectual and developmental disabilities and of aging, we conducted scoping reviews in each of these fields. The two reviews sought to answer the following questions: 1) What types of interventions are being done? 2) What kinds of outcomes do they have? 3) What kinds of innovative approaches are being used? 4) What are the gaps in the research? For the purposes of this review, we define ‘‘innovative approaches’’ as methods identified in our review as emerging with one population but not in the other population. Our approach takes a bidirectional perspective on aging and disability research. We reviewed the gerontological interventions in consideration of what disability researchers and practitioners can learn, and similarly reviewed the disability literature to discover what gerontology researchers and practitioners can do to make health promotion more inclusive for people aging with and without disabilities. Due to the aging of adults with intellectual and developmental disabilities, efforts to close the gap that exists between the two broad areas of aging and disability research has the potential to progress both fields, and improve the lives of people aging with long-term disabilities.

Methods Scoping reviews are used to rigorously identify and synthesize key findings and patterns in a field of inquiry. While systematic reviews seek to answer narrow research questions in a well-defined subset of research, scoping reviews address more broad topics in order to identify underlying concepts without limiting based on study design. Standard methods for scoping reviews include tightening the research questions and defining the field of inquiry, identifying and gathering relevant research studies, study selection, and extracting data.12 First, we scoped the disability literature on health promotion interventions for adults with intellectual and developmental disabilities, and then did the same with the general aging literature on health promotion interventions for older adults. The disability review reviewed twenty years of research to fully survey the health promotion landscape of this smaller field, while the aging review pulled promising practices from the last five years of health promotion interventions to identify the newest emerging ideas and themes in this well-researched field. In order to get the most consistent results across these two fields, we utilized the same major databases for both searches: PsychInfo, Medline, CINAHL, and Google

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Scholar. For both searches, the search terms used included: health education, health promotion, nutrition, exercise, health promotion methods, and health behavior. The searches were limited to peer reviewed, empirical intervention studies in English that examined health promotion. As about 75% of adults with intellectual and developmental disabilities live with their families in the community,13 this review is concerned with community-based programs and we excluded health promotion taking place in nursing homes and rehabilitation settings. Articles were reviewed systematically and were excluded at the abstract level if they did not meet the inclusion criteria. After review of the articles, more articles were excluded. While specificities pertaining to each review are highlighted below, more information on the search process is detailed in Fig. 1. The data from the final selected studies were then extracted on the research study design, the type of activity, the setting, and outcomes. Two reviewers conducted the data extraction, with disagreements resolved by the authors to find consensus (see Table 1). Intellectual and developmental disabilities For review of research within intellectual and developmental disability, the following additional search terms were used: cognitive disabilities, intellectual disabilities, mental retardation, developmental disabilities, mental handicap, and learning disabilities. Other terms included: autism, chromosomal abnormality, Down syndrome, fetal alcohol syndrome, phenylketonuria, neural tube defects, and spina bifida. Only studies of adults (18 years and older) were included. The intellectual and developmental disabilities section of this review draws upon an earlier scoping review14 limited to physical activity and nutrition from 1986 to 2006, that study found 11 articles meeting this selection criteria. We added health screenings and updated the review to 2007e2011. The new search yielded 219 health promotion articles about people with disabilities. After reviewing abstracts the number was reduced to 43 articles; an additional 20 were eliminated upon reading the full text for not fitting the criteria. The remaining 23 and the 11 from the previous review totaled 34 articles. Aging The aging search examined studies of an aged target population (averaged 50 years and above) for the years 2007e2011. Reasons for limiting the average age to 50 and above were twofold. First, this is the entry point for many programs for older adults at senior centers and member organizations such as AARP.15 And second, data collected about the health of older adults often categorizes them as 50 and older.16 The initial search yielded 2611 studies. Scanning titles to remove articles that did not fit based on the selection criteria reduced that number to 421. Reviewing abstracts limited the articles to 293. Full

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Fig. 1. Study abstraction process.

text review further eliminated articles that did not have empirical study designs, which reduced the number of articles to 176.

screening interventions (29%). Designs included randomized control (29%) quasi-experimental (26%) and single group preepost test design (44%). The interventions took place in community settings (50%), living facilities (21%), and in other settings (12%).

Results Intellectual and developmental disabilities: interventions and outcomes The articles reviewed were categorized into three types of interventions: 1) fitness/exercise only (47%); 2) multicomponent interventions (24%); and, 3) health care and

Fitness/exercise only Many of the health interventions aimed at adults with intellectual and developmental disabilities focused solely on physical activity and exercise. Most of these interventions included one or more of the following types of activities: 1) balance; 2) cardiovascular and endurance; 3)

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Table 1 Study characteristics by aging and developmental disabilities Aging Variable Setting Community setting Home Fitness center or university center Living facility/senior housing Other or unclear Type of intervention Exercise only Psychosocial/health education Multi-component Screening Other Research design RCT Quasi-experimental No comparison group, multiple observations Other Findings: types of outcomes Fitness (balance, walk speed, etc) Psychosocial (quality of life, self-efficacy, depression scales, etc) Weight or waist circumference Health (disease-specific, cholesterol, disease management etc) Other

resistance training; and, 4) sports activities. Outcomes of these interventions included improved balance, strength, and aerobic capacity, in addition to lower blood pressure. Some weight loss was identified, but evidence for obesity reduction was inconsistent. Behavioral and psychological outcomes included reduced challenging behavior, anxiety, hyperactivity, and greater focus and attentiveness. Multi-component interventions The more comprehensive programs provided exercise and additionally incorporated a health education component that included healthy eating, physical activity, and health self-care. Some of the additional components included nutrition and exercise,17e21 stress reduction,17 and home visits.17,19,22 Four specific curricula were used: Health Education Literacy Program (HELP),17 Exercise and Nutrition Health Education Curriculum for Adults with Developmental Disabilities18,20,23 (now renamed as Health Matters: The Exercise, Nutrition and Health Education Curriculum for People with Developmental Disabilities), Steps to Your Health,19 and a curriculum adapted from Activate.24 The intervention described by Chapman et al22 comprised individualized support from a healthy living coordinator that included follow-up home visits for advice and support. Evidence from multi-component health promotion programs indicated that they can result in positive physical, health behavior, and psychosocial outcomes. Many of these studies had a weight loss focus, and some found reduced body weight or body mass index by the end of the intervention.20e22,24 The Steps to Your Health curriculum targeted the specific health condition of obesity.

Developmental disability

Frequency

Percentage

Frequency

Percentage

81 31 19 19 26

46% 18% 11% 11% 15%

17 0 7 7 4

50% 0% 21% 21% 12%

43 60 50 14 9

24% 34% 28% 8% 5%

16 0 9 9 0

47% 0% 26% 26% 0%

86 24 56 10

49% 14% 32% 6%

10 9 15

29% 26% 44% 0%

77 55 25 78 24

44% 31% 14% 44% 14%

15 11 9 8

44% 32% 26% 24% 0%

Health screenings The interventions featuring health screenings by health professionals included the following: 1) screening that specifically addressed health needs of adults with intellectual disabilities25; 2) a general health check/screening24,26; 3) a comprehensive geriatric assessment (Stay Well and Healthy)27; and 4) use of the Comprehensive Health Assessment Program (CHAP).28e30 Studies of health screenings found that these screenings generally resulted in more subsequent clinical activities. Other benefits reported included less pain, fewer falls, fewer emergency room visits and greater satisfaction.27 Intellectual and developmental disabilities: innovative approaches While most interventions relied on more traditional health promotion methods, we identified studies that used new approaches in terms of supports and technology. Several studies demonstrated the important role of sustained support by caregivers, support personnel, and professionals in facilitating positive outcomes of health promotion interventions, as well as showing the benefits of coupling an individualized needs approach exercise program with support.31 Additionally, a couple of interventions used technology to enhance the intervention, for example by incorporating DVDs or video games.32 Aging interventions and outcomes The aging interventions addressed multiple approaches: physical activity only (24%), physical activity combined

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with other components (28%), health screenings and assessments (8%), health education or psychosocial only interventions (37%), or other strategies (5%). Study designs included randomized control (49%), quasi-experimental (14%), single group preepost test design (32%), or other empirical designs (6%). Interventions took place in community settings (46%), at home (18%), senior housing or assisted living facilities (11%), or other settings (15%). Exercise/fitness only The exercise/fitness only studies featured exercise and did not include a psychosocial component. While the types of physical activity were mostly standard forms such as walking and resistance training, other activities, such as tango classes,33 modern jazz dance,34 and games35 were also identified. Dance programs increased sensory and balance skills,33,34 yoga increased bone strength and balance.36,37 Pool-based exercises decreased anxiety, increased coordination, and improved sleep.38,39 Many interventions used cognitive measures, with mixed results ranging from a statistically significant decline in the control group,40 no significant differences between groups,34 or decline in both groups but more so in the control group.41 A tai chi study found a decrease in stress levels,42 and a walking intervention improved memory and attention span in participants.43 Multi-component interventions The multi-component programs incorporated other elements with physical activity, such as motivational interviewing,44 cognitive-behavioral group discussion,45 or health education.46 Outcomes of multi-component interventions included increased self-efficacy,46,47 improvement in pain and stiffness,48 fewer hospital re-admissions,49 increase in exercise,50 and decrease in systolic blood pressure.51 In some cases, interventions had weaker outcomes in follow-up.45 Health screenings Health screening interventions used health education and psychosocial strategies to encourage older adults to get screenings for colorectal cancer,52 substance misuse,53 prostate cancer,54 internal ocular health,55 and breast cancer.56 The studies found an increased knowledge about the importance of screenings,57,58 an increase in screenings,56,59 and a decrease in challenging behavior.53 Psychosocial or health education Many of the psychosocial interventions promoted healthy eating, physical activity, good cognitive function, and self management behaviors for chronic conditions. Strategies included group discussion, problem solving, and motivational interviewing. Psychosocial interventions often found positive outcomes in self-efficacy,60 diseasespecific indexes,61 and self esteem.62

Other Other interventions included health check logs,63 training in using the internet to retrieve health information,64 and volunteering and civic engagement. Volunteering and intergenerational programs resulted in improved self-rated health,65 neurocognitive plasticity66 and use of a computer e-health ‘‘butler’’ system reduced depression.67 Specific conditions Interventions for specific conditions often combined psychosocial strategies, such as small group discussion, with exercise and nutrition specifically designed for their condition. Disease-specific interventions resulted in significant reductions in disease-specific parameters. Diabetes programs reduced blood glucose and insulin.68,69 Osteoporosis interventions resulted in improved medication adherence.60,70 Interventions targeting obesity resulted in reduced BMI and waist circumference.71 Aging innovative approaches The studies of health promotion among the aging population included strategies that tested the generalizability of interventions to various populations and settings, which addresses the intervention’s sustainability and it’s ability to be embedded within program structures in natural settings. The programs took place in natural locations such as senior centers, libraries, senior housing, YMCAs, cultural centers, malls, and naturally occurring retirement communities. Some interventions sought to reach racial and ethnic minorities.53,71 Intervention designers dovetailed health promotion programs with another activity. For example, a colorectal cancer screening education intervention was added to flu shots for older adults, significantly increasing screening adherence.59 In this way, health programs in the aging review worked within the confines of preexisting structures to enhance them and impact greater numbers of their target. Health promotion strategies addressed new segments of older adults, such as older workers72 and specific ethnic communities such as Native American73 or African American57,74,75 in order to address health disparities and deliver more culturally competent programming. Other interventions employed new health promotion strategies, such as storytelling to reduce blood pressure76 and volunteering with children to increase neurocognitive plasticity.66 Additionally, some interventions found innovative ways to incentivize health behavior, either directly through prizes,77 through friendly competition such as games,35 or more psychologically meaningful incentives such as volunteering.78

Discussion This review largely found that published studies of both aging and developmental disability community-based

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health promotion interventions resulted in benefits for participants. Generally, in both fields, physical activity interventions demonstrated positive fitness outcomes; multi-component interventions led to positive physical, health behavior, and psychosocial outcomes; and health screening interventions increased clinical activities and screening adherence. In the aging review, health education and psychosocial interventions demonstrated improvements in self-efficacy and other self-reported measures. Both fields are pursuing new strategies, with developmental disability interventions making use of technology, and health programs for older adults utilizing a variety of different settings and motivating strategies. Aging and disability remain two separate fields with much to learn from each other. This review identified the following five areas that could be adapted from recent gerontological health promotion research into health promotion interventions for people with intellectual and developmental disabilities: 1) greater use of theory; 2) stronger research designs; 3) better use of natural settings and translational strategies; 4) greater focus on specific diseases and conditions; and 5) use of peer mentors, civic engagement, and volunteering. The aging review demonstrated greater use of theory in intervention design. Theoretical orientations represented in our review were predominantly the same as traditional health promotion, such as the trans-theoretical model of behavior change,79 the health belief model,80 and social cognitive theory.81 While the theoretical orientations used in the most recent gerontological health promotion are in general not novel and the psychological assumptions underlying the health behaviors have been used in health promotion for some time, the manner of interpretation and use by those designing the interventions is being transformed. For example, social cognitive theory was the theoretical underpinning to a program to help non-English speaking older adults overcome barriers to physical activity. The use of social cognitive theory with a linguistically diverse audience was novel. Disability scholars planning interventions could make better use of these theoretical approaches. Studies included in the aging review had stronger research designs. Nearly half (49%) of these studies were randomized control trials compared to 29% of the developmental disability studies. The disability studies were more likely than the aging ones to lack any comparison groups, to have small samples, and to lack long-term follow-up. One explanation is that the population of people with intellectual and developmental disabilities is smaller and another is that often there is a bias that adults with disabilities are sick and would not benefit from health promotion.82 Health promotion for older adults increasingly recognizes the impact of multiple levels of influence,83 implying that habitual environments have meaningful impact on health. Social ecological approaches toward understanding root causes of behavior have led to health promotion

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interventions more fully integrated with natural settings. Researchers are increasingly bringing evidence-based interventions to communities in systematic ways, such as the RE-AIM framework.84 To further translate interventions in community settings, future disability research needs to address the adoption and maintenance of these programs in community-based settings.20 Interventions in the aging literature were more likely to target specific conditions, such as fibromyalgia, diabetes, and osteoporosis. Programs such as the Chronic Disease Self Management Program (CDSMP) have evolved to develop disease-specific versions of program, such as the Diabetes Self Management Program (DSMP).85 As adults with intellectual and developmental disabilities are at a greater risk of developing chronic conditions at younger ages than other adults,3 targeting such conditions could be effective health promotion strategies for them. Finally, disability researchers could benefit from better use of peer mentors, civic engagement, and volunteering. We found peer leaders were a popular means for delivering health promotion interventions in the aging review, with nearly 11% of the interventions using volunteers or peer leaders. Social cognitive theory posits that health messages resonate more strongly when coming from a recognizable peer. Due to the unique lived experience of having a developmental disability, peer leaders could play a critical role in health promotion, as well as benefiting the peer leaders themselves. While the aging research is more extensive, themes exist within the disability literature that could benefit aging scholarship. This review identified the following three main areas where disability research can inform aging researchers: 1) better adaptation of programming for cognitive impairments; 2) adaptation of equipment for people who have physical disabilities; and 3) adherence to principles of self-determination. Hence, curriculum and activities developed for adults with intellectual and developmental disabilities address accessibility through use of pictures, simple language, and repeated instructions and physical accessibility through adaptation of equipment and other forms of exercise. Key principles of self-determination approaches inherent to the disability philosophy and part of the criteria used when bringing a program to people with disabilities is highlighted in Drum et al86 guidelines for developing health promotion interventions to people with disabilities. Hence, gerontologists could better apply concepts of cognitive and physical accessibility to the growing population of people with dementia or physical limitations using principles of universal design. Also greater consideration of the desires and preferences of older adults could improve motivation and adherence. A limitation of this review was that it was not a full systematic review. Hence, the quality of the studies was not evaluated further. While using scoping review methodology allowed us to more broadly survey two fields of research, the field would benefit from a rigorous systematic

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review. This review was also limited by the different range of years used to compare the two populations. While this was done to encapsulate the breadth of the smaller field of study (intellectual and developmental disabilities) and pull new and promising practices from a far larger field (aging), the unequal years compared may have influenced the results.

Conclusion In light of the demographic and philosophical context in which health promotion occurs at present, we are moving toward disability and public health working together to include people with disabilities, and health promotion must move in this direction as well. The aging health promotion programs identified in this review did not include any people with intellectual and developmental disabilities, and the Chronic Disease Self Management Program87 has typically excluded this population as well. People with intellectual and developmental disabilities should be included in public health interventions offered to the general public. At the same time it is important to tailor these interventions to incorporate the specific needs of this population. More education is needed for researchers in aging regarding use of universal design principles that are inclusive of people with disabilities. One example is the Midwest Roybal Center for Health Promotion and Translation at the University of Illinois which has included both disability and aging health promotion initiatives conceptualized from the same model.88 Collaboration between the fields of aging and intellectual and developmental disabilities is critical to future scholarship in health promotion for both populations. As people with intellectual and developmental disabilities live longer, researchers conducting disability health promotion research can incorporate ideas from the aging literature into future interventions for people with intellectual and developmental disabilities. Gerontological health promotion is a vigorously researched field with many types of health interventions and translational approaches that could benefit by the inclusion of universal design principles into all interventions to maximize participation of a wide range of aging individuals. Also, gerontological researchers can use the research within the area of intellectual and developmental disabilities to identify ways to adapt health promotion interventions to people with cognitive and physical limitations.

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