AGING WITH A disability is a growing phenomenon of concern within the United States. Over 49 million Americans over the age of 5 years have a disabling condition1 that affects employment, education, income, and the ability to participate fully in society.2 As they age, persons with permanent disabilities are at risk for developing auxiliary health problems owing to a higher susceptibility to comorbid illnesses and secondary conditions; a lack of attention to their healthcare concerns by health researchers; a decreased access to preventive health services3; and disorganized, ill-timed, reactive healthcare.4 Moreover, people with disabilities account for 46% of the expenditure by adults on healthcare and 41% of the expenditure on prescription drugs.3 Indeed, the pervasive impact of conditions surrounding living with a disability can be felt at the individual, familial, and societal levels.
One possible strategy for diminishing the impact of conditions that surround living with a disability is for individuals with disabilities, their families, and the societies in which they live to employ health-promoting strategies. Health promotion holds promise for enabling the use of strategies and for structuring environments for the purpose of diminishing the susceptibility to physical and mental health problems that might occur over time without such strategies. It has been posited that the health problems associated with living with a disability may be reduced with the use of health-promoting strategies,5 but problems related to the tailoring of theoretical concepts and health interventions to the needs of people with disabilities,6 as well as unclear ethical, economic, and practical guidelines for implementing health-promoting strategies, are obstacles to success. As a result, health promotion specifically for persons with disabilities should be examined more closely by healthcare researchers in order to understand the impact it may have on the lives of persons with disabilities. Specifically, health promotion should be studied as a macro (eg, a focus on societal change) as well as a micro (eg, a focus on individual-level behavioral change) level tool for the improvement of health in persons with disabilities.
The purpose of this article is to examine the concept of health promotion for persons with disabilities. First, the definitions of disability and health promotion will be reviewed. Next, the results of a critical review of the literature on health promotion for persons with a disability will be reported. Finally, the findings of this review will be discussed.
For purposes of this article disability is defined using the theoretical perspectives of Verbrugge and Jette7 and Nagi.8 According to these theorists, disability is a perceived limitation in performing socially defined roles and tasks such as a paid employment, childcare, or voting. The closely related concepts of impairment and functional limitation are not identical to disability. Impairment is damage or variation in a person's body or organ system(s). A functional limitation is the inability to do physical activities such as walking, climbing, speaking, or writing. Both impairment and functional limitation may or may not lead to disability.7,8 Disability and the related concepts of impairment and functional limitation may be influenced by extra-individual (medical care, assistive devices, health insurance, and ramps) and intra-individual (lifestyle, personality, and accommodation strategies) factors.7
The concept of health promotion was introduced in 1974 in Canada and in 1979 in the United States.10 By the mid-1980s, the United States began issuing health promoting objectives for the nation in Healthy People 2000 and then Healthy People 2010, and Canada hosted the Ottawa Charter for Health Promotion. This conference, which hosted 38 countries, defined health promotion as a multidimensional source for living well, not the central point for living, and health promotion was defined as the course of action used to reach optimum levels of well-being.11
Since then, health promotion has been analyzed repeatedly in the literature.11-16 Overall, most authors agree that health promotion is a broad concept that goes beyond disease prevention and health education. Health promotion originated as a tool to help people live out their potential, growing out of public health efforts to prevent disease and disability and has evolved into a broader concept focused on the values and perceptions of health due to changes in technological, economic, ethical, sociological, political, and medical knowledge of our complex societies.9,10,17
Currently, health promotion has both micro and macro strategic levels. The micro explanations for health lost primacy, however, as knowledge of the complex conditions that foster, if not create, health and illness surfaced. Ethical critiques also noted that micro-level health promotion could be said to be lacking in blaming victims of illness due to ill-fated ecological fit that produced poor health outcomes. Moreover, health from an authoritative perspective on the micro level was noted to be marketed to the individual as an item to be bought and sold.9 The need for equity within health preceded the evolution of the concept as a political movement for collective health change. Theorists have further advanced the concept to include the possibility of health for those with illnesses who use health-promoting behaviors.16 Authors did not consider the impact of health on those with disabilities but no illness.
REVIEW OF THE LITERATURE
Because of the origin of the concept as discussed earlier, health promotion has frequently been presented as a means to prevent disabilities in people without chronic illness or injury, creating a strain between those with permanent disabilities and health promotion supporters.18 When the articles were reviewed for this report, most of them found indexed under "health promotion" and "disabilities" covered the use of health promotion to prevent disability. The strong focus on disability as the negative consequence of not using health-promoting strategies may explain the lack of attention people with disabilities have received regarding their health-promoting needs. It took an evolution of the health promotion concept before health promotion strategies were adapted for people with disabilities. In fact, in the earlier health objectives for the United States, such as Healthy People 2000, people with disabilities were not assigned objectives for their health. It was not until Healthy People 2010 was published that objectives for health were included for people with disabilities. Rimmer19 states that the move to include people with disabilities in health promotion strategies amounts to a paradigm shift. In the following section, the results of a critical review of articles resulting from that paradigm shift are detailed.
METHOD
The terms health promotion and disability were entered into CINAHL (1986 to February 2005) and MEDLINE (1966 to February 2005) databases. To further the search for research articles on health promotion and disability, the journal Health Promotion International was searched online from 1997 to 2005. Next, the reference sections of multiple articles were searched for unidentified articles on disability and health promotion. Once a large group of potential articles were identified, articles were eliminated if they did not report research, if they did not focus on health promotion, if they were focused primarily on chronic illness, if they were scale development articles, and if they were in languages other than English.
RESULTS
After irrelevant articles were eliminated, 23 articles remained for review. These articles were grouped together into 1 of 3 categories: meaning of health and health promotion, factors that contribute to health or health promotion, and health promotion interventions. Results of the search are presented in Table 1. A table describing the articles reviewed can be obtained on request.
Meaning of health
Of the 23 articles identified, 8 focused on the meaning of health or health promotion for persons with disabilities. Of these studies, 6 used inductive methods to arrive at the participants' definition of health, which is consistent with the definition of health in the context of health promotion as reviewed earlier. On the basis of a review of these studies, 3 areas of commonality were found that contributed to health for persons with disabilities.
A commonality within many of the studies was the importance of functioning as an aspect of health for persons with disabilities. For women in Nosek and colleagues' study,20 the lack of an exacerbation of disease or the lack of a secondary condition contributed to their health despite baseline levels of disability. In Putnam and colleagues' study,21 being able to do things despite levels of disability was important to the authors' definition of health. The participants described their need to be independently acting out their daily goals. In 2 studies, being able to work was a part of their ability to function.5,21 The importance of being able to function well and perform roles was also a finding in Stuifbergen and colleagues'22 larger study of 135 people with disabilities and their definitions of health. Moreover, being able to be active was predictive of less decline and greater social activities in 2 larger quantitative studies of functioning and health-related outcomes.23,24
Another commonality in the definitions of health was the importance of relationships or connecting with other people. Lindsey25 found that people with disabilities report the importance of bringing new people into their lives and having reciprocal relationships that allow them to be cared for and to care for others. Similarly, Stuifbergen and Rogers5 wrote that family was an important contributor to quality of life for people with multiple sclerosis. Quality of life was supported by health-promoting behaviors that included the maintenance of their interpersonal support system. This was delimited, however, by Nosek and colleagues,20 who stated that positive support was a contributor to health while being around negative people was not. It was also difficult to maintain paid personal support.
Finally, the importance of being in a state of positive mental well-being was noted across studies. Lindsey25 described this as acquiring a state of grace; the participants felt at peace and connected as a whole person when healthy. Stuifbergen and Rogers5 wrote that having a positive attitude was an important health-promoting strategy, which was similar to the findings of Nosek and colleagues.20 Moreover, in a study of 851 retired individuals, having a positive affect was predictive of less functional decline over a 5-year period.23
Factors that contribute to health or health promotion
Ten articles were identified that focus on factors that may contribute to the health or health-promoting lifestyles of people with disabilities. These studies are grouped into 2 main categories. The first category is a group of studies on the use of predefined adverse health behaviors or prevention practices. The second category is a group of studies that explored factors that may predict or explain the health promoting practices of persons with disabilities.
Health risk behaviors due to adverse behaviors and the lack of health preventive services were explored in 3 studies. Adverse health behaviors were studied in 2 of the articles; 1 in a group of 11- to 16-year- olds with disabilities,26 and another in a group of working-age women.27 Both studies found that those with disabilities were at an increased risk for engaging in possibly health-damaging behaviors. The working-age women were at increased risk for smoking, drinking, and being overweight. The students were at an increased risk for substance abuse and engaging in conflicts at school. The lack of preventive services was studied using data from 2 large population surveys.28 This study reported that persons with disabilities regardless of the severity of their impairments were less likely to receive multiple screening and preventive services such as mammograms, tetanus shots, and Pap tests. There were no statistically significant differences in influenza immunization rates between those with and those without mobility impairments. Overall, these studies of health risk and preventive strategies are based in the earlier evolving tradition of health promotion where negative behaviors are used to explain negative health outcomes.
Seven studies reported factors that might explain health promotion behaviors or outcomes. For instance, barriers to health promotion for people with disabilities are reported most frequently. Becker and Stuifbergen's29 study of persons with disabilities found that fatigue was a frequently reported barrier to the engagement in health-promoting behaviors. Hall and colleagues30 reported similar findings when studying the barriers to healthy eating; being too tired to cook was the most frequently reported barrier.
Macro level reasons for differences in health promotion were explored in 2 studies. The first study explored macro and micro levels of health promotion in their study of the impact of marital status on health promotion and disability outcomes.31Marital status and gender were defined as socially derived statuses that affect the overall health of people with multiple sclerosis. These authors found that marital status was predictive of acceptance of disability and perceived decline over a 6-year period, and that more marital concern was associated with less frequent health-promoting behaviors. The results also indicated that gender differences may exist that influence health outcomes in persons with disabilities such as multiple sclerosis. Next, Fox and Kim32 did a policy analysis of a disability waiver in Kansas on health service utilization and costs. These authors found that the disability, which allowed for community instead of institutionalized care, increased the utilization of outpatient services such as home health and transportation. This indicated that the people were able to negotiate and receive their community health needs. The authors also found that costs increased but attributed them to an increase in services offered over time.
The impact of engaging in a health-promoting lifestyle was explored in 2 similar studies of women with multiple sclerosis. In both Stuifbergen and Roberts33 and Stuifbergen and Becker,34 the authors found that women with multiple sclerosis who participated in health-promoting behaviors had positive outcomes. In the first study,33 health-promoting behaviors mediated the impact of severity of impairment on perceived quality of life. In the next study,34 the authors wrote that women with multiple sclerosis who reported to engage in a higher level of health promotion over a 3-year period also reported a lower level of decline in their disability status. These studies focused on the positive aspects of health behaviors and how these behaviors might bring positive health outcomes in women with disabilities.
Health promotion interventions
Five articles presented results of health promotion interventions for people with disabilities. The strength of these interventions is that they are theoretically based in health promotion and use a theoretical perspective for raising the health consciousness of their participants. For instance, 2 of the studies used Antonovsky's sense of coherence35,36 to improve disability-related outcomes, such as work roles and effects of secondary conditions, while 2 others drew on social cognitive theory and self-efficacy37,38 to improve or increase health-promoting behaviors. Only 1 of the interventions was a randomized clinical trial.38 The other studies were smaller pilot studies that need further testing, indicating the need for more work in the area of health promotion interventions for people with disabilities. Moreover, the interventions focused heavily on behaviors instead of health outcomes as identified by people with disabilities. Two of the interventions,36,38 however, used individual goal setting, which would be more consistent with health promotion theory.
DISCUSSION
This review of health promotion for persons with disabilities was limited to studies indexed in CINAHL and MEDLINE using the terms health promotion and disability. Other articles on these topics may have been overlooked. Articles could have been included in other databases or indexed differently using terms such as wellness interventions. It is believed, however, that this review contains a representative sample of what is known about the topic. Hence, this review may be used as a basis for discussion.
It should be considered when interpreting these results that the researchers all defined their samples with the term disabled, disabling condition, or disability, but the definitions of disability varied. Most of the authors focused their research on general samples of people with physical limitations or impairments, not disease-specific groups. In other words, most of the studies did not study disability as specific to a disease process, which is appropriate given the definition of disability as a social phenomenon (as defined by Nagi8 and Verbrugge and Jette7). Exceptions would be the studies of disability and health promotion in persons with multiple sclerosis; these authors used multiple sclerosis as an exemplar of a disabling condition. The majority of the studies also used the concept of disability to indicate a functional limitation. The exception was the study by Medin and colleagues,35 which defined disability as an individual's inability to fulfil his or her social work roles owing to functional limitations, a definition most consistent with the one provided by Nagi.8 The varied definitions of the concept of disability used by the researchers when defining samples for purposes of studying health promotion may have affected the findings of the research.
In this review it was found that the researchers used primarily inductive methods to arrive at the definition of health for persons with disabilities. When examined for commonalities, the articles indicated that persons with disabilities view their health as a product of function, relationships, and a state of positive well-being. Health promotion interventions were theoretically derived, but the majority were small pilot-type studies, only 1 being a randomized controlled study. At this early point in the development of health promotion interventions, the impact of health promotion efforts on overall health is not available.
The majority of the studies were designed to study the individual with a disability. This focus on the individual person may result from a lack of studies of health among collectives of such persons. In other words, there were no studies found that defined health for communities of persons with disabilities. It is difficult to address health promotion needs at a macro level without doing some type of community health assessment first. Persons with disabilities, however, are usually dispersed throughout communities, making community assessment difficult without taking into consideration the health of persons without disabilities. On the other hand, one must ask, If the health of the entire community were assessed, would the voice of the disabled be lost, and would health disparities related to unequal power distributions be created? Moreover, how are macro-level needs addressed while the individual's right to define their health and choose the means to achieving it are respected?
There were 2 studies that were considered macro-level examinations of health promotion outcomes. The study by Harrison and colleagues31 found that marital status, a socially constructed and reinforced status, may influence health-promoting behaviors in a large sample of men and women with multiple sclerosis. It would be controversial, however, to advocate for policies to encourage people with disabilities to marry. So this may not lead to any macro-level interventions. The second macro-level study by Fox and Kim32 indicated that a waiver policy that allowed people to use community-based services enhanced the use of community services and activities for persons with disabilities. Further work of this type would be highly useful to help understand how public policy influences health behaviors in people with disabilities.
Further studies are needed which evaluate social policies that may influence the ability of persons with disabilities to promote their health. It might be fruitful to begin by conducting an analysis of power distribution in communities that affect health-related outcomes for people with disabilities. It might motivate or guide social change as related to health and persons with disabilities. Similarly, a study of social capital within a disability culture might expand our understanding of the sociopolitical impact of disability in relation to the community and society. Social capital is a multidimensional concept that encompasses the social group a person belongs to and the benefits/obligations which accompany that membership.39 Social capital may influence health outcomes because of the benefits of social group membership and the degree of trust the person may have in his or her social group.40 Struggle with a social group versus trust in the communal outcomes could affect well-being as well as which health services are used.
Overall, this review illuminated the tension between micro and macro levels of health promotion for persons with disabilities. Despite the evolution of the concept of health promotion to macro-level applications within the literature, there was little evidence of its application within disability research. For instance, all but 2 of the studies focused on individual- or micro-level health promotion; all of the intervention studies were micro-level. Further clarification is needed on how health promotion, an inductively derived concept used to benefit both the individual and community, might be used to effect positive health behaviors in people with disabilities on multiple levels while respecting ethical considerations for individual choice and equity.
CONCLUSION
The possibility of health for people with disabilities marked a paradigm shift in the field of health promotion.19 To evaluate the impact of that shift, a review of health promotion and disability research was performed. In comparison to the number of studies on health promotion, that on health promotion for persons with disabilities was small. There were, however, enough studies that trends could be discussed.
On the whole, definitions of health and health promotion were inductively defined concepts that emerged from the voice of persons with disabilities, which emphasized the importance of function, relationships, and a positive mental attitude. Barriers to health promotion were commonly reported as reasons for not engaging in health promotion-fatigue being a common barrier. Authors also suggested that better outcomes occurred when people with disabilities engaged in health-promoting behaviors. There were few interventions, and only 1 study was a randomized clinical trial. The majority of the research reviewed used micro-level conceptualizations of health and health promotion apart from the evolution of the concept within the literature, suggesting the need for macro-level definitions and interventions. Future studies may need to evaluate the possibility of macro-level interventions for communities to promote the health of persons with disabilities on a broader scale.
REFERENCES