A New Framework and Practice Center for Adapting, Translating, and Scaling Evidence-Based Health/Wellness Programs for People With Disabilities : Journal of Neurologic Physical Therapy

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A New Framework and Practice Center for Adapting, Translating, and Scaling Evidence-Based Health/Wellness Programs for People With Disabilities

Rimmer, James H. PhD; Vanderbom, Kerri A. PhD; Graham, Ian D. PhD, FCAHS, FNYAM

Author Information
Journal of Neurologic Physical Therapy: April 2016 - Volume 40 - Issue 2 - p 107-114
doi: 10.1097/NPT.0000000000000124

Abstract

People with newly acquired disability or those in rehabilitation for a secondary health event (eg, falls, respiratory illness, urinary tract infection) often experience significant setbacks in participating in various life activities, including critical health behaviors such as obtaining regular physical activity.1–4 Therapists typically prescribe some sort of home-based exercise program that the patient is expected to continue independently, but poor adherence to such interventions after discharge is common.5 Part of the reason for this low compliance may be related to performing exercise in an isolated setting such as the home. Rimmer et al6 identified several factors that may improve long-term adherence to physical activity including social engagement with other community members; increasing the enjoyment factor by including a variety of exercise options that can be “mixed and matched” based on interest level, motivation, and availability; exploring new outdoor and indoor environments that involve nature walks/rolls in different parks and neighborhoods and visiting museums; and for younger individuals, competitive and recreational sports are a mechanism for promoting regular physical activity. Most of these recommendations are embedded in the Centers for Disease Control and Prevention's (CDC's) 24 evidence-based strategies for promoting increased physical activity and improved nutritional behaviors,7 and thousands of communities across the United States are using 1 or more of them to develop programs, services, and venues that encourage residents to achieve higher levels of physical activity and better nutrition.8

The CDC's evidence-based strategies should also apply to people with disabilities but often do not because of the many personal and environmental barriers that limit access to these programs, services, and venues at the local community level. While many people find it relatively straightforward participating in a daily walk, joining a fitness center, or doing other forms of physical activity with friends and family members, people with newly acquired and existing disability can find it enormously challenging attempting to partake in these same opportunities, particularly after they complete rehabilitation and are advised to maintain a regular program of physical activity.9–11 While there are examples of successful efforts to promote lifelong wellness practices in people with disabilities,12–14 there are a number of barriers that must be overcome. Some of the more common barriers to physical activity include inaccessible facilities, lack of transportation to and from indoor and outdoor recreation venues, absence of knowledgeable staff who know how to adapt programs for certain conditions or impairments, and a general perception or attitude among providers that people with disabilities need “specialized” versus integrated services.15–17 These and other barriers significantly reduce opportunities for people with disabilities to participate in community-based health/wellness programs and expose them to higher rates of physical inactivity and poor nutrition leading to obesity and other health disparities.18–20

There is a pressing need in health care for therapists to have at their disposal a trustworthy set of guidelines or strategies that support community-based health/wellness initiatives for people with disabilities. Before this can occur, however, therapists and other rehabilitation providers need to begin serving as knowledge “brokers” in helping build an evidence base of successful “best practices.” This article describes a new framework located in a national resource and practice center that is planning to serve as a “hub” for therapists and rehabilitation professionals to share in the development of new knowledge to promote increased access to community-based health/wellness programs, services, and venues for people with newly acquired and existing disabilities.

FRAMEWORK FOR ADAPTING, TRANSLATING, AND MAINTAINING EVIDENCE-BASED HEALTH/WELLNESS PROGRAMS FOR PEOPLE WITH NEWLY ACQUIRED AND EXISTING DISABILITY

The National Center on Health, Physical Activity and Disability (NCHPAD, www.nchpad.org) is a national resource and practice center that has been funded by the CDC for the last 17 years. Over this timeframe, NCHPAD has developed a large compendium of resources for promoting beneficial physical activity and healthful nutrition for various ages and disability groups. In 2015, the Center developed a knowledge-to-practice model that integrates the work it has been doing in knowledge creation and dissemination with the growing need to advance work in implementation facilitation.

Illustrated in Figure 1 is the NCHPAD Knowledge Adaptation, Translation, and Scale-up (N-KATS) framework. N-KATS contains 4 sequencing strategies: Knowledge Adaptation (strategy 1), Dissemination and Training (strategy 2), Implementation Facilitation (strategy 3), and Update and Maintenance (strategy 4). In the aggregate, these 4 strategies are aimed at promoting Community Health Inclusion, which we define as the opportunity for people with disabilities to have equal access to the same health/wellness initiatives offered to other members of the community. In the area of physical activity, this may include any number of program initiatives that promote greater access to physical activity in indoor health/fitness facilities or outdoor physical activity environments involving public recreation, bicycle, and sidewalk infrastructures.

F1-6
Figure 1:
NCHPAD Knowledge Adaptation, Translation, and Scale-up (N-KATS) framework. NCHPAD, National Center on Health, Physical Activity and Disability.

Strategy 1, Knowledge Adaptation, focuses on adapting new and existing practice- and evidence-based knowledge for individuals with disabilities and/or organizations and communities serving individuals with disabilities. Strategy 2, Knowledge Dissemination (which includes Planning and Training), involves the systematic transfer of knowledge to key stakeholders with subsequent training opportunities to effectively use the information (eg, tools, materials, resources) in real-world settings to accomplish the goal of community health inclusion. Strategy 3, Implementation Facilitation, places the knowledge into a practice framework that accelerates the delivery of information through a carefully defined set of steps that promotes engagement between therapists and local physical activity service providers. And Strategy 4, Evaluation and Maintenance of Knowledge, provides the infrastructure for allowing therapists to serve as knowledge “brokers” in helping expand the evidence base of successful “best practices” so that the content in strategy 1 can be regularly updated, maintained, and scaled to a growing number of health care professionals and communities.

INTEGRATING THE KNOWLEDGE-TO-ACTION CYCLE INTO N-KATS

While the N-KATS framework illustrated in Figure 1 provides an overarching view of NCHPAD and the strategies associated with moving “knowledge” into “action,” Figure 2 integrates the theory and steps behind this knowledge translation approach using Graham's knowledge-to-action (KTA) cycle,21 which is a synthesis of common elements contained in more than 30 planned action theories and involves an iterative, dynamic process that bridges knowledge producers with knowledge users.22 The KTA cycle emphasizes that the knowledge creation/adaptation process (strategy 1 shown inside the circle and funnel) must be linked to “action” (ie, implementation), which is shown in the boxes on the outside of the circle (strategies 2-4). Integrating the KTA cycle into the N-KATS framework reflects the importance of connecting knowledge creation, adaptation, and packaging (inside the circle and funnel) with knowledge dissemination/training, implementation, and evaluation (outside the circle/funnel). Implicit and unique to the N-KATS framework is the utility of having trained staff from a national resource and practice center (ie, NCHPAD) work closely with key decision makers at the local community level in an iterative and dynamic structure that allows for sustainable growth and expansion over time.

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Figure 2:
Knowledge-to-action framework integrated into N-KATS. CDC, Centers for Disease Control and Prevention; GRAID, Guidelines, Recommendations, and Adaptations Including Disability; iCHIP, inclusive Community Health Implementation Package; NCHPAD, National Center on Health, Physical Activity and Disability; N-KATS, NCHPAD Knowledge Adaptation, Translation, and Scale-up; OPS, obesity prevention strategies.

Strategy 1: Knowledge Adaptation

A common challenge among therapists and other rehabilitation professionals is how to manage the wealth of information and evidence associated with a certain practice or skill and subsequently customizing it for a specific patient or organization. Strategy 1, Knowledge Adaptation, illustrates the 3-step filtration process (inside the funnel) for synthesizing large sets of information/knowledge (eg, in our example obesity prevention strategies [OPS] for the general population) into smaller, more usable sets of materials (ie, adapted obesity prevention guidelines for people with disabilities) and ultimately packaged into resources that have been tailored for use at the local level.

In the example shown in Figure 2, we begin with the overarching source of information, the OPS developed by the CDC. These strategies were developed from extensive systematic reviews and best available evidence.7 The end product of several years of systematic research and expert panel guidance resulted in 24 evidence-based strategies for promoting increased physical activity and improved nutrition at the community level. These strategies are broad in scope and do not have a level of precision that would allow therapists and other rehabilitation professionals to apply the content to people with disabilities. Therefore, the second level of filtration involves the adaptation of the OPS to promote access to individuals with newly acquired or existing disability.

In a previous study, we adapted the OPS for people with disabilities. The end product was a set of community-based Guidelines, Recommendations, and Adaptations Including Disability (GRAIDs).23 The GRAIDs development process involved the application of explicit and reproducible methods so that the content could be used by any stakeholder/adopter at the local level. The methodology consists of 5 components: (1) a scoping review of the published and gray literature; (2) an expert panel composed of 21 nationally recognized leaders in disability and health promotion who review, discuss, and modify the scoping review materials and develop the content into draft GRAIDs; (3) focus groups with individuals with disabilities and family members who provide input on the potential applicability of the proposed GRAIDs in real-world settings; (4) a national consensus meeting with the 21 expert panel members who review and vote on a final set of GRAIDs; and (5) an independent peer review of GRAIDs by national leaders from key disability organizations and professional groups.

Each GRAID is separated into 3 structural sets of content: (1) an overarching guideline that matches the evidence-based CDC strategy (ie, OPS); (2) a set of inclusion recommendations separated into 5 domains—built environment, equipment, services, instruction, and policy; and (3) a list of adaptations for each set of inclusion recommendations (by domain) that provides a high level of specificity for promoting community health inclusion in the target program, service, or venue. A sample GRAID is shown in Table 1.

T1-6
Table 1:
Abbreviated Sample GRAIDa Communities Should Improve Access to Outdoor Recreation Facilities and Programs for People With Disabilities

The GRAIDs provide therapists and other rehabilitation professionals with the ability to select the recommendations and adaptations that are most pertinent to their patients/clients, taking into consideration available community resources. Successful recommendations and adaptations can then be captured and archived in NCHPAD and used to build a growing evidence base from local “case reports.” The most promising recommendations and adaptations could then be tested empirically to build a stronger evidence base around certain recommendations and adaptations that are having a measure of “practice-based” success.

The third and final level of knowledge filtration is packaging tools and products that are relevant to target end users. To achieve greater success in disseminating information that is relevant and of interest to the appropriate end users, customized sets of training materials and tools are tailored for each sector of a community. The CDC divides the “community” into 5 sectors: community-at-large (eg, outdoor setting), health care facilities, community-based institutions/organizations (eg, a fitness center), schools, and the workplace. These customized sets of resources/tools are referred to as an iCHIP, which stands for inclusive Community Health Implementation Package.

Table 2 describes the composition of a core iCHIP, which includes specific learning objectives and focus areas for each set of materials. The local therapist or health care professional would not necessarily need to use all of the materials in an iCHIP but, instead, would prioritize the areas of need and use the appropriate training tools to address them. For instance, if a therapist wanted to help make a greater number of community fitness facilities more accessible to patients being discharged from rehabilitation, the first step would be to assess each facility's level of accessibility using the Community Health Inclusion Index (CHII).24 A subsection of the CHII could be used to get a baseline assessment of certain accessible/inaccessible features of the facility. If after completing the assessment the results demonstrated that there was a need to increase knowledge among staff at the local fitness center on how to work with people with disabilities, the Community Health Inclusion Training and Technical Assistance Guide (CHITTAG) (for fitness professionals) could be used to provide specific content associated with safety features, disability etiquette, exercise, and recommendations.

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Table 2:
Sample Set of iCHIP Learning Objectives, Training Materials, and Focus Areas

Strategy 2: Dissemination and Training

After knowledge has been converted into customized sets of iCHIPs (ie, by sector), the transfer of this knowledge begins in strategy 2, Dissemination and Training. One of the major challenges in knowledge translation is the failure to effectively transfer new knowledge into existing systems and networks.25 Research has shown that the dissemination of information alone will not ensure the widespread diffusion of effective recommendations or practices.26 Uptake of knowledge typically does not occur with simple dissemination and usually requires a substantive effort to encourage use at the point of decision making.27

Strategy 2, step 1 begins with a Call to Action to raise awareness at the local, state, or national level of 1 or more problems associated with lack of community health inclusion and targeting dissemination to key stakeholders. The Call to Action essentially focuses on “getting the word out” to the appropriate stakeholders that there is a certain area of need related to access to physical activity by people with disabilities. A major dissemination channel for physical therapists would be through the national office of APTA. Partnering with APTA would allow members to be made aware of NCHPAD resources and materials and opportunities to work with NCHPAD staff in answering questions via e-mail or a toll-free number or hosting webinars on specific information related to GRAIDs, iCHIP, and other products.

A successful dissemination effort should attract interest among local health care professionals in addressing the problem. Once interest has been established, steps 2 to 4 in strategy 2 involve training local health care professionals in establishing an inclusive health coalition or how to serve as a committee member on an existing health coalition (step 2), organizing and conducting a formal assessment in 1 or more community sectors to determine gaps in services (step 3), and preparing a draft work plan (step 4). Developing a detailed work plan ensures that all critical elements toward community health inclusion are considered. The results of the assessment would determine where the emphasis should be placed in the work plan goals.

Once the work plan goals have been established, the appropriate iCHIP training tools would be selected by the local inclusive health coalition based on the targeted sector(s) and program(s). Any number of targeted areas could be considered by the coalition in promoting 1 or more elements of community health inclusion (eg, improving the accessibility of a fitness facility, training local fitness providers in disability inclusion, developing more inclusive health communication media and materials, changing or adding a local policy to provide better transportation access to and from a facility, program, park). NCHPAD staff would facilitate all training via Web or in person.

Strategy 3: Implementation Facilitation

Strategy 3, Implementation Facilitation, focuses on assisting the provider (eg, fitness professional, trainer, family member) in implementing the work plan in the specific community targeted for community health inclusion. Using what Harrison et al22 refer to as a “planned action approach,” this strategy involves a detailed set of implementation steps for achieving an intended outcome. The KTA cycle was developed for this purpose and reflects a synthesis of 6 common elements illustrated in Figure 2.22 On the left side of the framework are 3 steps required for successful implementation: (1) gap analysis to align the appropriate GRAID(s) with the local context; (2) assessing barriers/supports to using GRAIDs; and (3) selecting, tailoring, and implementing GRAIDs.

  1. Conduct a gap analysis. A structured, systematic process is used with participation from many different stakeholders including the target program provider and individuals with disabilities and their family/caretaker, to increase the chances for a successful outcome. Aligning GRAIDs with the local program requires thoroughly exploring and specifying the proposed changes to the program. This is referred to as a gap analysis and considers the following information: (a) reach of the proposed implementation (eg, number of sites that would benefit from this initiative); (b) who needs to be involved (eg, staffing); and (c) potential changes to delivery of the program (eg, specific GRAID adaptations). This information will demonstrate how the program is currently being delivered and how best to infuse 1 or more elements of community health inclusion. The lack of community health inclusion could be relatively minor or it could be quite extensive necessitating multiple changes to the target program using several GRAID domains (built environment, equipment, instruction, service, and policy). In either case, understanding this gap provides the necessary foundation for successful implementation.
  2. Assess barriers and facilitators to using GRAID(s). It is critical to systematically identify the barriers and facilitators to implementation. Harrison et al22 recommend that these be organized into 3 categories: innovation (GRAID), adopter (practitioner, manager, patients/families), and environment.
  3. Select and tailor GRAIDs. During this step, the inclusive health coalition should discuss the various barriers and facilitators and select the appropriate set of GRAIDs, including the recommendations and specific adaptations, necessary for overcoming any identified barriers. Implementation facilitation can include a variety of methods to address specific barriers. Each GRAID includes a comprehensive list of adaptations divided into 5 domains: built environment, equipment, services, instruction, and policy. Once the target community health inclusion initiative has been finalized, the coalition coordinator and implementer (eg, a YMCA director interested in purchasing universally designed exercise equipment and targeting new members who are being discharged from rehabilitation) can review and select the appropriate adaptations necessary for achieving the intended outcome. Each adaptation will soon be linked to a variety of print and video resources offered through the NCHPAD, which are referred to as inclusion elements.

Strategy 4: Update and Maintenance of Knowledge

The fourth and final strategy relates to process (formative) and summative evaluation and maintaining successful change (steps 4-6 on the right side of the framework).

  • 4. Monitor GRAID use and evaluate implementation process. It is important for the inclusive health coalition and implementer to conduct an ongoing process evaluation to monitor the level of GRAID usage. By understanding the extent and fidelity of GRAID implementation, the implementation team will be able to support the implementation process and make suggested changes, where necessary, to overcome any new barriers as well as be able to accurately document improvements in community health inclusion. The process evaluation plan will also help identify where additional implementation facilitation may be needed to support a local community health inclusion initiative. One of the major strengths of the N-KATS framework is providing inclusive health coalitions and implementation teams with access to NCHPAD staff who can assist with establishing an online process evaluation plan that can allow cross-linkage across communities to determine collectively how certain barriers are or are not being addressed by a local implementer.
  • 5. Evaluate outcomes. This critical step involves the use of a set of quantitative (eg, CHII or other valid instruments) and qualitative measures (eg, semistructured interviews with implementer) to assess the impact of implementing 1 or more GRAIDs. The CHII can be used to measure overarching changes in 1 of the 5 GRAID domains (built environment improvements, new or adapted equipment, improved or new services, improved instruction/training, or a policy change). Additional measures may be used to get a “finer” level of change associated with a certain community health inclusion initiative. It is also important to obtain qualitative information on how the implementer felt about making certain changes to his or her program/facility, in addition to assessing the impact of organizational (system) change that may have resulted in a new policy or community health inclusion initiative across several facilities within the same system (eg, health care, school).
  • 6. Sustain GRAID use: Update and maintain. One of the major issues in adapting evidence-based guidelines and strategies is being able to update, sustain, and scale successful practices.28 NCHPAD is aimed at supporting organizations or local service providers to leverage and sustain existing relationships and resources in order to create capacity for inclusive health/wellness environments and systems that support the needs of people with disabilities and their families. NCHPAD is in an ideal position to provide therapists and other rehabilitation professionals with a centralized data collection center for gathering information on successful and unsuccessful approaches to community health inclusion. The Center was built on an information and communication technology (ICT) platform that has grown considerably over the last decade and now has the capacity to collect large sets of information that can be rapidly customized and disseminated to various providers and organizations. Successful interventions can be scaled at local, regional, national, or international levels.

DISCUSSION

The integration of the KTA cycle into N-KATS is ideal for providing health care professionals with the ability to serve as both knowledge creators and knowledge facilitators. New knowledge can then be “fed” back into the knowledge adaptation circle so that a more customized set of “evidence-informed” materials can be developed to achieve greater success at the local level. The materials can also be archived for scale-up in other states and communities, and as the level of evidence grows for a certain practice or program, the inclusion guidelines, recommendations, and adaptations (GRAID) can be updated and categorized by the quantity and quality of evidence (eg, strong, moderate, emerging).

The gap in services between rehabilitation and evidence-based health/wellness12,2930 programs, services, and venues makes it extremely difficult for many individuals with existing and newly acquired disability to improve their health and function in community-based settings.31 Rehabilitation professionals can play an important role in partnering with community-based health/wellness service providers to ensure that patients returning home after rehabilitation have a place to continue their recovery in the community. As rehabilitation services evolve to meet the changing needs of people with disabilities, there is a need for improved outcomes monitoring so that all stakeholders—consumers, providers, payers, researchers, and policy makers—are assured that services are delivered and community participation improves.

SUMMARY

For long-term sustainable health improvements, communities must provide the necessary “built-in” supports (eg, trained staff, accessible information and facilities, appropriate adaptations) that allow people with disabilities opportunities to engage in community-based health/wellness initiatives that are cost-effective and sustainable. For the past 17 years, NCHPAD has developed a large compendium of resources for promoting beneficial physical activity and healthful nutrition for various ages and disability groups. The Center is now positioned to move to the next level of national scope by training therapists and other rehabilitation providers in moving knowledge into practice.

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    Keywords:

    Community transition; Disability; Evidence-based; Health promotion; Knowledge translation

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