Guidelines for the Implementation of Community-based Health Promotion Programs for People with Disabilities

Charles Drum, JD, PhD

 

Introduction

Health and wellness are building blocks that help people to live a full and complete life. For the nearly 53 million Americans who identify themselves as having a disability, being healthy and reducing secondary conditions are especially important to good quality of life and full community participation. Yet, people with disabilities may be the largest group of Americans that experience a gap in health status referred to as health disparity.

Over the past ten years, the number health promotion (HP) programs targeting people with disabilities have greatly increased. Still, the science behind health promotion programs for people with disabilities is in the early stages of growth. There are many key questions to answer: How should people with disabilities be involved in HP programs? How does the field make sure that HP programs are accessible to people with disabilities? How does the field make sure that HP programs use practices based on research findings and evidence?

The purpose of this presentation is to offer a set of guidelines for use in health promotion practice. Program planners can use these guidelines when creating and assessing health promotion programs for people with disabilities.

Research Objective

What criteria should planners of health promotion programs for people with disabilities use to plan and evaluate their programs?

Methods

The Rehabilitation Research and Training Center on Health and Wellness (RRTC) created a national Expert Panel to put together a set of guidelines on health promotion for people with disabilities. The panel is made up of experts in HP for people with disabilities. The process used by the Expert Panel was based on a process called nominal group consensus. The procedures included review of relevant background material and drafting guidelines based on the health promotion research literature. Each guideline criterion was discussed and edited multiple times until the Expert Panel reached agreement.

Results

Operational Guidelines for Health Promotion Programs for People with Disabilities

Criterion No. 1: Health promotion programs for people with disabilities should have an underlying conceptual or theoretical framework.

Issue: Does the program use theories and concepts drawn from a wide variety of disciplines such as health promotion, disability studies, and/or education?

Issue: Does the program integrate appropriate theories and concepts into all aspects of the health promotion program, i.e., in planning, implementation and evaluation?

Criterion No. 2: Health promotion programs should implement process evaluation.

Issue: Does the program include process evaluation measures for people with disabilities, families and caregivers, including rating satisfaction with the program?

Issue: Does the program make changes based on participant feedback?

Issue: Does the program have mechanisms for obtaining process feedback using appropriate methods, such as the use of readers or interpreters?

Issue: Does the program record intervention-related expenses such as cost of materials, recruitment, equipment, space, and personnel?

Criterion No. 3: Health promotion programs should collect outcomes data using disability-appropriate outcome measures.

Issue: Does the program collect data on outcomes of health promotion activities?

Issue: Are the outcome measures appropriate for people with disabilities, e.g. not penalizing for functional limitations?

Participation Guidelines for Health Promotion Programs for Persons with Disabilities

Criterion No. 4: People with disabilities, families or caregivers should be involved in the development and implementation of health promotion programs for people with disabilities.

Issue: Did people with disabilities, families and caregivers participate in the development of the program by identifying program outcomes or reviewing program content before implementation?

Issue: Are people with disabilities, families and caregivers involved in implementing the program?

Criterion No. 5 Health promotion programs for people with disabilities should consider the beliefs, practices and values of its target group(s), including support for personal choice.

Issue: Are the beliefs, practices, and values of people with disabilities reflected in the program’s mode of delivery, training materials, and written materials?

Issue: Does the program provide adequate information to facilitate informed and personal choices by participants?

Issue: Does the program support participants in identifying and achieving their personal health goals?

Accessibility Guidelines for Health Promotion Programs for Persons with Disabilities

Criterion No. 6: Health promotion programs should be socially and behaviorally accessible.

Issue: Does the program consider social and behavioral and environmental barriers that reduce participation among people with disabilities?

Issue: Are accommodations provided when requested?

 

Criterion No. 7: Health promotion programs should be physically and programmatically accessible.

Issue: Is the program site available via accessible public transportation?

Issue: Does the program consider environmental barriers that reduce participation among people with disabilities, including environmental accessibility of the program site (e.g., physical, signage)?

Issue: Do the program materials (e.g., training materials, handouts) lend themselves to being translated into alternate formats?

Issue: Are process and outcomes measures produced in a variety of alternative formats including but not limited to: Braille, large print, and computer disk?

Criterion No. 8: Health promotion programs should be affordable to people with disabilities, families and caregivers.

Issue: Does the program maintain reasonable participant fees?

Issue: Does the program ensure low-cost transportation for participants?

 

Conclusions

The intent of the Guidelines is to increase the use of operational, participation, and accessibility principles applied by health promotion programs for people with disabilities. While there is not enough research to create true evidenced-based guidelines for the field, the rigorous procedures used by the Expert Panel to create these guidelines ensures that they represent best practice in the field. More research is needed to measure the impact of the use of the criteria.

Implications

The guidelines provide a much greater recognition of the role of people with disabilities and their families in the development and implementation of health promotion programs.

Health promotion planners are the intended audience for these Guidelines. They are not intended to be a substitute for other generic recommendations regarding health promotion program implementation or used in the absence of other procedures to evaluate programs. The Guidelines are intended to increase the extent to which programs apply operational, participation, and accessibility principles to disability and health promotion programs.

Health promotion implementers, including federal, state and local governmental agencies, should consider adoption of the guidelines formally both for programs that they implement and programs that they support financially.

The Guidelines should inform the work of disability and health promotion researchers as well as practitioners. In addition, future research should measure the empirical impact of the adoption of the criteria, as well as mechanisms to ensure their adoption by programs.

 

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