WOMEN with disabilities have pressing needs for health information and services due to tremendous disparities and barriers to accessing health services and health promotion programs. Prominent disparities for women in this population include employment, income, access to healthcare, obesity, physical activity and depression and other mental health conditions. Few of randomized, controlled research studies have been conducted on health promotion for women with disabilities. Carefully targeted programs must be developed and evaluated for efficacy and effectiveness, and existing programs made accessible. In this brief article, I offer 10 essential elements for effective health promotion research and interventions for women with disabilities.
Health promotion, defined here as the science of helping people change their behavior to attain a state of optimal health,1 is more complex in the context of disability where it involves the (1) promotion of healthy lifestyles and environments, (2) prevention of health complications and further disabling conditions, (3) preparation of individuals to understand and monitor their health and healthcare needs, and (4) promotion of opportunities for participation in commonly valued life activities.2,3
I propose that to conduct effective interventions and research on health promotion for women with disabilities, the following 10 elements must be emphasized: (1) overarching goals, (2) knowledge of the state of the science, (3) high priority issues, (4) consumer participation, (5) feminist principles, (6) theory-based program, (7) population of focus, (8) disability-related barriers, (9) theory-based qualitative and quantitative evaluation, and (10) peer-reviewed documentation of efficacy, effectiveness, and replicability.
Health promotion research and intervention for women with disabilities should address the overarching goals of Healthy People (HP) 2010,4 which are to increase the quality and years of healthy life and eliminate health disparities. In addition, initiatives should incorporate the disability-related goals of promoting the health of people with disabilities, preventing secondary health conditions, and eliminating disparities.5 Not long ago, a goal "to promote the health" of individuals with disabilities would have defied the definition of health promotion, which traditionally aimed to prevent disease and disability among healthy people. Because illness and disability were equated, we would have heard an outcry, "How can you be healthy when you're disabled!!" All people with disabilities were thought to have poor health, and the environment was not seen as playing a role in the disabling process.5 Fortunately, people are beginning to understand that disability and health are not mutually exclusive ways of being, and that the barriers to achieving a state of optimal health are often more limiting than the disability itself.
KNOWLEDGE OF THE POPULATION
Women with disabilities currently comprise 17.6% of all US civilians, noninstitutionalized women aged 16-64 years, and 43% of those 65 and older.6
Initiatives are needed to develop effective health promotion tools and programs so that women with disabilities can maximize their health. According to Women's Health 2004,7 the most common causes of activity limitations in women are arthritis or rheumatism (24.8%), back/neck problems (21.0%), heart problems (15.1%), and hypertension (12.1%). Moreover, more than 11% of women report activity limitations related to depression, anxiety, or an emotional problem. Yet, many women live in robust health, including some who use a ventilator and can move 1 finger only.8 For most, however, the severity of disability is associated with poor health and quality-of-life outcomes. These poor outcomes are often not the result of the disability per se. The socioeconomic and cultural contexts of women's lives also play a large role.
Preliminary findings from an analysis of data from the 1994-95 National Health Interview Study indicate that women with severe disabilities (ie, 3 or more limitations) were more likely to have lower levels of education, lack employment, have lower household income, and live below the poverty level than those without disabilities (National Center for Health Statistics, unpublished data, 2002). Women with disabilities were also more likely to report depression, anxiety, and stress than those without disabilities (21% vs 2%).
Stress, which is ubiquitous in all women's lives, has been linked with poverty9 and violence.10 Disability-driven stress compounded by poverty and low income is amplified by additional expenses for disability-related costs. These added expenses involve the cost of healthcare, assistive devices, personal assistants, and accommodations for transportation and other essentials for daily living. A study of 415 women with disabilities revealed that stress was significantly related to greater pain, lack of social support, and current abuse.10 These findings warrant the inclusion of techniques for managing stress in health promotion programs for this population.
Women tend to respond to stress by "tending and befriending" and thus strengthening their positive support networks.11 Women with disabilities, however, may not have adequate opportunity to maintain healthy social connections especially if they live alone or lack transportation to visit friends and family. Health promotion for women with disabilities should aim to enhance social networks, social support, and their ability to connect with others.
The phenomenon of social isolation (or disconnectedness) is linked with an increased vulnerability for abuse in the context of disability.12 In addition to the risks of psychosocial, sexual, physical, and economic abuse that all women face, women may experience disability-related abuse such as the withholding of medication and/or assistive devices and the denial of essential personal assistance (eg, help with eating and toileting).13 Safety planning information should be included in all health promotion interventions for this population.
The report of the 2002 Beijing Fourth World Conference on Women14 states, "A major barrier for women to the achievement of the highest attainable standard of health is inequality [horizontal ellipsis]" (section C-89). Major inequalities for women with disabilities persist. As mentioned earlier, many women with disabilities live in dire poverty, a socioeconomic problem that has been called "the most basic cause of ill health and early death in our society."15(p655) Women with severe disabilities have the lowest earnings of any other group in this country.16 The overlap of female gender, ethnic minority membership, and disability status often leads to living on the bottom rung of the economic ladder.16
Recent public health reports and findings of empirical research point to several high-priority issues for women with disabilities (National Center for Health Statistics, unpublished data, 2002).4 These priorities include disparities in health screenings, weight, emotional support, depression, satisfaction with life, and physical activity. Secondary conditions, to which women are susceptible as a result of a primary disabling condition,17 introduce greater disability and difficulty with daily activities. The conditions commonly reported by women include pain, spasticity, fatigue, depression, sleep difficulties, weakness, cardiovascular problems, and problems with overweight.11,17 A recent symposium on improving the health of women with disabilities identified the following research priorities: (1) secondary conditions, (2) health promotion, (3) access to healthcare, (4) reproductive health, and (5) psychosocial health.18 Research is needed to clarify the status of women with disabilities in those 5 areas.
Participating in the day-to-day activities of one's community and social activities is essential for maintaining one's health. The independent living movement emphasizes the importance of controlling one's life, having options, making decisions, performing daily activities, and participating in the community.19 In keeping with this philosophy, women with disabilities should be involved in every phase of health promotion work. Utilizing participatory action research techniques, researchers can assume the role of learner to understand women's experiences, which, in turn, can be used to help identify the research questions, goals, and consumer-oriented outcomes.20 Women with disabilities can work together to provide input on the focus, content, and process of the program; recruit participants; serve as peer facilitators; and help evaluate the data, interpret the results, and disseminate the findings.
According to feminist principles,21 the drive toward connectedness is central to people's lives. A sense of competence and empowerment can result when women participate in mutually supportive groups. Peer socialization and support have been identified as effective ways of promoting positive behavioral changes in the context of disability.
The health promotion model that we use at the Center for Research on Women with Disabilities (CROWD) proposes, in part, that intervention programs will lead to increased self-efficacy and social connectedness, which will then lead to improved health-promoting behaviors. Finally, health-promoting behaviors are expected to lead to improved physical and psychological health status. Findings from the qualitative analyses of participant feedback from our health promotion program for women aging with disability strongly support our model.22 The findings from our stress self-management intervention study yielded support for social connectedness and self-efficacy as mediators of the relation between the intervention and perceived stress.23 Furthermore, perceived stress was shown to mediate the intervention on mental health. Those results offer partial support for the CROWD model.
Various theories have contributed to the understanding of ways to motivate people to initiate and maintain health-related change.23,24 On the basis of learning theory, behavioral change principles24 have been used effectively in health promotion research and interventions for women with disabilities.22,25,26 Self-efficacy, which provides a key example, involves individuals' judgments of their abilities to complete the actions required to attain desired outcomes.27 Self-efficacy has been shown to be an effective mediator between the intervention and outcomes in health promotion for women with disabilities.22,25 Health promotion researchers and interventionists incorporate activities for increasing self-efficacy and other skills in their work.22,23,28
POPULATION OF FOCUS
When designing health promotion programs, it is important to use empirical evidence and clinical expertise to determine whether to focus on women with all types of disabilities (eg, cognitive, sensory, etc), women with a specific diagnosis (eg, spinal cord injury), or women with broader limitations (eg, mobility). Our health promotion work at CROWD suggests no reason to discontinue enrolling women with various types of physical disabilities. On occasion, we have included women with mobility impairments who had coexisting brain injuries or types of mental illness that limited their ability to participate fully in group activities. In these cases, a more focused program would have better met the needs of these women. Principles of inclusion would support convening groups of women with various disabilities; however, researchers may require a more homogenous sample to develop and evaluate their interventions. From an ethical standpoint, we must consider with caution what woman will benefit from what type of program under what circumstances.
ATTENTION TO ENVIRONMENTAL BARRIERS
The relationship between impairment and functional ability is often determined by environmental barriers. Take the example of health promotion. Women with disabilities all too often experience the pervasive inaccessibility of exercise facilities and lack of fitness professionals who are knowledgeable about disability, making it difficult to maintain or improve their level of physical functioning.29,30 In addition, women may lack accessible and affordable transportation, money for childcare, or someone to help them get out of bed, bathe, eat, and dress for the program. Pain and other health conditions may also interfere with their desire to participate in health promotion programs.8 Becker and Stuifbergen31 identified intrapersonal, interpersonal, and environmental barriers to health promotion among individuals with chronic disabling conditions.
THEORY-BASED QUALITATIVE AND QUANTITATIVE EVALUATION
Theory-based evaluation32 is structured around the underlying assumptions of the program and focuses on the mechanisms intended to effect change. Those evaluating health promotion programs for women with disabilities should undertake both qualitative and quantitative theory-based evaluations. These processes will help determine how well the program fulfilled its objectives and whether or not the assumptions were supported. Since health promotion for this population is in its infancy, repeated evaluations are needed to build a knowledge base about the most effective change mechanisms. To attain this body of knowledge, it is important for groups of researchers to collaborate in designing and implementing studies whose findings may generalize from one setting to another and from one population to another.
I recommend that program developers consider the feminist approach, which supports qualitative methods of evaluation. For example, qualitative evaluators could conduct postintervention telephone interviews with participants. To minimize bias, the evaluators selected as interviewers would not have had any direct involvement with the intervention. The data could then be analyzed through the use of established methods such as the constant comparative method.33 Unexpected outcomes may emerge that magnify or disavow the intended outcomes. For example, at CROWD we have been disappointed to find conflicting feedback from participants on the perceived benefits of a buddy system in which women pair up with one another to offer support for goal attainment. However, this qualitative finding has helped us explain our lack of quantitative support for social connectedness as a mediator between the intervention and the outcomes. Using other strategies to encourage connectedness, or using an alternate measurement tool, may support our choice of social connectedness as a mechanism of change. Alternatively, if evidence suggests that participants make significant improvements on the distal outcomes without significant change on our proposed mediator, then quite possibly the theory-driven mechanism was not necessary and could be eliminated in future studies.32
EFFICACY, EFFECTIVENESS, AND REPLICABILITY
The characteristics of an intervention with demonstrated efficacy (Phase II Research) are essentially different from an intervention with demonstrated effectiveness (Phase IV Research).34 To demonstrate efficacy ("in the laboratory"), it may be necessary to measure mediators and outcomes; to use different assessment points, intent-to-treat analyses, and stringent control strategies; and to interpret anticipated and unanticipated outcomes. When attempting to demonstrate the effectiveness ("in the real world") of interventions, researchers rely on the same methods for efficacy trials, but measures may be limited and cost is typically evaluated. Efficacy trials demonstrate utility and practicality. They utilize randomization and control conditions, measure outcomes, and monitor delivery of the intervention. Moderating factors that limit robustness across settings, populations, and intervention staff need to be addressed in both efficacy and effectiveness trials.35 Cost-effectiveness should be calculated for both types of trials. Thus, it is important to track all intervention-related expenses including costs of intervention materials, recruitment, equipment, staff, participant fees, time, and space.
Researchers value the replicability of studies. We heard in years gone by that "replicability is the true test of validity." We know that in order for another to conduct our research with the aim of achieving the same results, we must describe our methods in sufficient detail. By conducting research meticulously, finding that the results make sense, and seeing other investigators corroborating the conclusions, researchers increasingly build trust in their findings.36 The credibility of the body of knowledge on health promotion for women with disabilities awaits replicability studies.
What I hope to achieve by writing this article is first and foremost that women with disabilities will gain equal opportunity to attain an optimal standard of health. I know from personal experience that without the resources and support available to me at the time I experienced injury and rehabilitation, my quality of life would be greatly compromised today. Most women living with disability lack these advantages. The problem is that society introduces tremendous environmental and attitudinal barriers to their opportunities to attain that level of well-being. Removing these barriers is critical to the ability to participate in all aspects of life, and this is the responsibility of every individual. It is important to adapt empirically based, face-to-face health promotion group interventions for women with disabilities into Web-based group interventions to reach rural women with disabilities and others who lack access to traditional, face-to-face programs designed for their unique needs. Through the use of the Internet and other cutting-edge technologies, women with disabilities can overcome the pervasive current barriers to health promotion.37
The health of women with disabilities includes their psychosocial and physical well-being. Biology and impairment and, most of all, the sociopolitical and economic contexts of their lives exert tremendous influence on their health. For women with disabilities, this all adds up to injustices and inequities, including major health-related disparities. Healthy People 20104 aims to reduce these disparities and promote healthy, long lives. It is time for the nation to address that public health agenda as well as the specific and high priority health issues for women with disabilities. Effective programs for this population must be designed to promote the health of women with disabilities, prevent secondary conditions, and eliminate disparities between women with and without disabilities.
It was my intent in this article to be gently provocative with the goal of stimulating discussion about the "best way" to go about building a body of evidence-based knowledge on health and effective health promotion programming for women with disabilities. For those of you who are involved in developing and testing health promotion programs for women with disabilities, I ask you to commit to the following 6 principles:
1. Address our nation's public health goals and priorities for women with disabilities.
2. Involve women with disabilities in every phase of the process: planning, design, implementation, evaluation, and dissemination.
3. Conduct formative research, pilot studies, efficacy and effectiveness trials, and replication studies.
4. Use theory-based program design, methods, and evaluation.
5. Consider carefully which woman will benefit from what program and under what circumstances (always erring on the side of inclusion).
6. Build and continue to develop your own knowledge base and expertise on the contextual features, environmental barriers, and other unique life circumstances faced by women with disabilities.
By committing to the principles presented in this article, we can create a movement for change in research and practice that will substantially enhance opportunities for improving the health and quality of life of women with disabilities.