Family & Community Health

March 2006, Volume 29 Number 1 - Supplement
Promoting Health in Persons With Chronic and Disabling Conditions , p 28S - 34S [FREE]


  • Alexa K. Stuifbergen, PhD, RN, FAAN


There is a growing number of persons with chronic disabling conditions and a concurrent interest and need for health-promotion interventions to prevent disability and promote quality of life within the context of chronic conditions. Most often researchers/clinicians build their own intervention focusing on selected dimensions of health promotion for a specific population. This article recommends an alternative process of building health-promotion interventions for specific groups through the adaptation of content and processes of well-developed intervention frameworks with sound theoretical and empirical support. This efficient approach enhances the likelihood that new interventions will prove to be effective and enhance the quality of life for persons with chronic disabling conditions.

There is a growing number of persons with chronic disabling conditions and a concurrent interest and need for health-promotion interventions to prevent disability and promote quality of life within the context of chronic conditions. Most often researchers/clinicians build their own intervention focusing on selected dimensions of health promotion for a specific population. This article recommends an alternative process of building health-promotion interventions for specific groups through the adaptation of content and processes of well-developed intervention frameworks with sound theoretical and empirical support. This efficient approach enhances the likelihood that new interventions will prove to be effective and enhance the quality of life for persons with chronic disabling conditions.


ACCORDING to current estimates, more than 49 million Americans live with some type of long-lasting condition or disability.1 The majority of these conditions are not due to trauma but are the result of common chronic diseases, such as arthritis, heart disease, emphysema, and multiple sclerosis (MS).2 During the last decade, substantial research efforts have been directed at defining the pathologic changes of various conditions, refining diagnostic and monitoring tests, and developing disease-controlling and disease-modifying medications. While much of the information generated from our biomedically oriented research has led to advances in the understanding of the pathology and impairment of many conditions, these findings are often of limited use to those actually living with chronic disabling conditions.


One of the more intriguing questions for both clinicians and researchers interested in developing interventions to prevent disability and promote quality of life among persons with chronic conditions is this: What factors (other than the biological impairment and disease process) influence the development of functional limitations and might explain the progression of functional limitations to disability? In an effort to identify psychosocial and behavioral factors that may influence the trajectory of functional limitations, disability, and quality of life in persons with chronic disabling conditions, a number of investigators have begun to develop and test innovative interventions to promote the health (rather than control the disease) of persons with chronic disabling conditions.3 Some interventions have focused on a single behavior, such as exercise,4 while others have taken a more comprehensive "lifestyle" approach.5 Most interventions have been developed for and tested with persons with a single disease/condition, although there are some examples of health-promoting interventions delivered to groups with varied diagnoses or disabilities.6


The most common approach seen in the literature is that researchers and clinicians build their own intervention to address one or more health behaviors in a specific population group (eg, those with diabetes, those with arthritis, those with MS). While these innovative interventions have contributed significantly to the literature of health promotion in chronic disabling conditions and brought benefits to those living with these conditions, the potentially limitless proliferation of different interventions and approaches has led to new questions about the most efficient and effective way to build interventions for persons with chronic disabling conditions.


Given the growing number of persons with chronic disabling conditions and the interest and need for health-promotion interventions, an alternative process of building health-promotion interventions that maximizes efficiency and effectiveness through adapting and testing existing interventions is needed and will be described in this article. As part of this process, it is important to distinguish health-promotion/wellness interventions from the disease and symptom management interventions commonly described in the literature. In addition, issues regarding the target population for an intervention (disease-specific group or mixed group) must be considered carefully.



"Self-management" is a common term used in the literature to describe both health-oriented and disease management interventions.7 Distinguishing disease management and health-promotion interventions is sometimes challenging as they may focus on some of the same behaviors-for example, exercise and nutrition for persons with diabetes mellitus. The critical difference between these 2 types of interventions is how they view the individual in interaction with his or her chronic disabling condition and the purpose of the behavioral change (maximizing health and quality of life vs control and management of disease). Using Patterson's8 work on shifting perspectives of chronic illness, health-promotion interventions would clearly have wellness in the foreground and illness in the background. Conversely, self-management interventions oriented toward controlling diseases and symptoms would have the chronic illness perspective in the foreground and the wellness perspective in the background.


Philosophically, health-promotion interventions are consistent with the construct of health within illness,9 and they emphasize enabling persons with chronic disabling conditions to take an active role in their healthcare. Instead of focusing on the narrow clinical aspects and seeking to control or manage illness, disability, or both, individuals are viewed as fully capable of managing their health and quality of life, within the context of their chronic condition or disability. Information specific to health promotion within the context of living with a specific condition is viewed as a resource that allows the person to choose behaviors to sustain and enhance his or her quality of life.


Pender10 proposes that levels of health exist along a continuum and interact with the experience of illness. Whatever the qualities of the illness experience (acute, chronic, or terminal), the individual continues on a quest for health-a process of development characterized by frequent experiences of challenge, achievement, and satisfaction. Through this ongoing developmental process, it is possible for a subjective state of "good health" to emerge in the presence of overt chronic conditions and disability.


Pender defines health promotion as "activities directed toward increasing the level of well-being and actualizing the health potential of individuals, families, communities, and societies."10(p4) Thus, health promotion incorporates a number of self-initiated health behaviors and stresses the need to enhance each person's responsibility and commitment to a healthy lifestyle. Behaviors such as physical activity, stress management, healthy eating, and cultivation of supportive interpersonal relationships can contribute significantly to one's subjective sense of wellness, perceived health, functional status, and quality of life.11,12 As the underlying disease and/or limitations and disability fluctuate or progress, health-promoting behaviors can serve to nurture the person's overall physical, mental, and social health, resulting in improvement or maintenance of function. Although health-promoting behaviors may not change the course of the disease or the barriers and resources existing in an individual's life, they may influence one's response to such conditions. For example, regular exercise can help one minimize fatigue and deconditioning and maintain optimal levels of energy and physical functioning within the context of the various limitations imposed by the disease.13 The health-promotion orientation toward lifestyle management (also referred to in the literature as wellness orientation) is similar to the self-care regimens already adopted by many persons with chronic conditions who seek to reestablish and/or maintain control over their lives and sustain their quality of life.


Unlike health-promotion interventions, the key feature of self-management interventions is the aim of increasing patients involvement and control of his or her medical treatment and its subsequent effects on their lives.14 The Chronic Disease Self-Management Program (CDSMP)15 is an excellent example of a carefully developed and tested intervention for persons with chronic conditions. Principal assumptions underlying the CDSMP include the assumption that patients can learn to take responsibility for day-to-day management of their chronic disease and that self-management of disease will result in improved health status and decreased utilization of healthcare resources. The CDSMP is "problem-based" and not only focuses strongly on symptom management (fatigue, cognitive symptoms, use of medications) but also includes content on more traditional health behaviors (nutrition and exercise). The important distinguishing feature is the goal of the intervention. Although the CDSMP includes health behavior topics the focus is on management of the disease (rather than maximizing health) and the primary goal is influencing the outcome and cost of the chronic illness.7


Although there is substantial interest in practice and the literature related to both health-promotion and self-management interventions, the body of evidence supporting the effectiveness of these interventions is limited. In an attempt to evaluate the association between wellness programs and improvements in quality of life, Watt and colleagues searched MedLine for studies conducted between 1980 and 1996. This review focused on "structured interventions" designed to promote wellness in the physical, psychological, or spiritual realm. While the initial search yielded 1,082 relevant references, only 11 of the studies met all of the inclusion criteria of Watt and colleagues,16 that is, the study reported a randomized controlled trial or prospective study, measured outcomes, and did not take place in the workplace or include human immunodeficiency virus-positive patients or cancer patients. All 11 studies did report some positive effects of wellness-oriented interventions. However, the target populations, content of the interventions, and the outcomes measured were highly variable. Sample sizes were small, leading Watt to conclude that the evidence for wellness interventions is inconclusive.


There are many reports of "self-management" or disease management interventions in the literature and at least 3 recent reviews.14,17,18 In a review of articles appearing in MedLine and HealthSTAR (1964-1999), Warsi and colleagues18 examined 71 trials of self-management education programs that included concurrent control groups and evaluated clinical outcomes. They reported that although publication bias did exist, self-management education programs did result in small to moderate effects for selected chronic conditions. Barlow and colleagues,17 in their review of 145 articles, noted that content of interventions is often poorly specified and that the effectiveness of different approaches (single behavior/problem vs multicomponent interventions) is unclear. In addition, many of the articles reported only within-group change over time or process evaluations. Furthermore, they noted that while there are broad similarities across various self-management approaches for persons with different chronic diseases, there are also important differences.



It is common for researchers/clinicians to build their own intervention focusing on selected dimensions of health promotion for a particular population of interest-most often, these are disease-specific interventions, such as the wellness program for women with MS.19 The primary argument for disease-specific interventions is that health promotion takes place within the context of the chronic disabling condition and thus must reflect how the unique aspects or limitations of the condition, or both, influence the person and the health-promoting behaviors. While it is clear that there are elements common to living with a chronic condition, the work of Thorne and colleagues20 highlights the importance of aspects unique to the "disease world" of the individual. These unique aspects may be biological (eg, muscle changes that influence how women with fibromyalgia should exercise) or experiential (eg, persons with MS may become afraid if they experience an increase in symptoms while exercising). Thus, certain information, certain behaviors, or certain kinds of interactions may be more appropriate for persons diagnosed with a specific condition. Furthermore, many individuals with a chronic disabling condition express beliefs that their condition presents unique problems and they consistently express a need for health-promotion information that is specific to their condition/disability (eg, how do I exercise safely and adequately when I have postpolio syndrome [PPS]?). Alternatively, it might be useful to define intervention groups not in terms of conditions but in ways reflecting other "nondisease" commonalities-mobility impairment, fatigue, chronic pain, gender, and nonvisible symptoms. However, it might prove more difficult to identify and recruit participants for such groups. Although the evidence to support disease-specific group interventions is not overwhelming, related work indicates that health-promotion interventions tailored to the individual's needs may prove to be more effective.21


There are several arguments that support the development of health-promotion interventions for general groups of persons with chronic disabling conditions. Foremost is the focus of the intervention on health and the outcomes of improved health, well-being, and quality of life rather than a focus on disease and disease management outcomes. In addition, many persons-especially older adults-have more than one chronic disabling condition (eg, diabetes and PPS). Evidence from numerous studies20,22,23 suggests that there are many common problems across chronic conditions and non-disease-specific groups may provide greater opportunities for persons to learn from each other. For example, persons diagnosed with MS have had to learn how to live well within the context of an uncertain disease prognosis that is likely to include some degree of functional limitations. Persons with MS who are experiencing progression of functional limitations might learn a great deal from persons with PPS who have often lived well with functional limitations for most of their lives. Conversely, persons with PPS who are struggling with the recent and often unanticipated onset and progression of symptoms might learn from those with MS about managing and accepting uncertainty. Although it might be more efficient to have one common intervention for persons with varied conditions, it might also be less effective at addressing the unique needs of any one group of persons.


At the present time, it may be impossible to resolve the question of whether health-promotion interventions should be "disease neutral." There is little evidence about differences or similarities in relationships of specific psychosocial and attitudinal variables to health-promotion behaviors and outcomes in different subgroups (eg, are relationships different between self-efficacy and exercise behaviors for women with diabetes and women with MS?) For example, findings from a recent study among persons with PPS24 suggest that the model of health promotion and quality of life in chronic disabling conditions, originally developed in studies with persons having MS,25 may be a useful explanation of these complex phenomena in persons with other chronic disabling conditions. While MS and PPS share several similarities, including an uncertain and unpredictable course, persons with PPS are unique in that they have been living with some degree of disability for most of their lives and now must adjust to new symptoms and related disability. Correlations among major study variables (self-efficacy, barriers, health behaviors, quality of life) were similar in both populations and the antecedent variables in the model explained large and similar amounts of variance in health-promoting behaviors in both samples (PPS: R2 = 0.65; MS: R2 = 0.58). However, there were some differences between groups as well. The path coefficient from severity of limitations to quality of life was significant at -0.18 in the MS sample and insignificant in the PPS sample. This may be because persons in the PPS sample who had lived with a significant limitation for many years (average of 50 years) had developed strategies to promote their health that were adapted to their strengths and downplayed the importance of physical limitations. Similarly, in Lorig's extensive work testing the CDSMP (N = 952),15 the scores from the different chronic illness groups (heart disease, lung disease, arthritis, and multiple conditions) were similar at baseline, and there were no disease by treatment group interactions.



It is not clear whether health-promotion interventions are more effective when developed and delivered to a homogeneous single disease group, perhaps, in part, because there is such a limited amount of information in the literature. Given the increasing number of persons with chronic disabling conditions, coupled with the interest and need for health-promotion interventions, it is suggested that adaptation of existing interventions be carefully considered.26 Such a process would limit the seemingly inefficient process of each researcher/clinician "reinventing the wheel" as he or she develops new interventions to promote the health of persons with chronic disabling conditions. The time has come to identify interventions that have been successful in helping individuals with chronic disabling conditions to promote their health and develop and validate a process of adaptation of successful interventions. The best logical and empirical evidence suggests that common and unique aspects are important considerations in these interventions.


First, researchers/clinicians must identify the index intervention they wish to adapt. These interventions should focus on wellness and health promotion rather than on disease management and they should expect that health is possible for persons with chronic disabling conditions. The focus of these interventions should be on empowering the individual (via access to information, resources, and skills) and primary outcomes should be health behaviors and quality of life. The index intervention should have structure, content, and processes that are clearly articulated and that can be replicated. The intervention should have been tested successfully in at least one chronic condition and include health-promotion information that is both general (eg, stress management techniques) and disease specific (eg, identification of stressors occurring with a particular disease, such as acquired immunodeficiency syndrome, or condition, such as mobility impairment).


Once identified, the index intervention can be modified for the new target population. The process and much of the content of the intervention may be similar-thus, the focus is on the specifics that might change because of the context of living with a specific chronic condition. Initially, the investigators can use existing literature to modify the content of the intervention. Ideally, existing descriptive research would identify the unique aspects and target variables for the intervention. Feedback from experts, especially those "insider" experts who have lived with the specific condition, can be used to further modify and refine the intervention. The unique aspects identified from the literature and experts can be used to tailor the content and processes of the existing intervention. Processes and activities may also need to be adapted for the new target population-for example, physical barriers may be more important to a population of persons with polio than to a group of persons with diabetes.


The process of adapting existing successful interventions may be enhanced by focusing not only on specific content but also on intervention processes that have proved effective. For example, self-efficacy has consistently predicted health-promotion behavior in a variety of groups,27 including persons with chronic and disabling conditions.15,19,28 There is a well-developed body of literature regarding how to build self-efficacy for health behaviors using performance accomplishment, vicarious experience, verbal persuasion, and emotional arousal.29 Health-promotion programs can be structured to provide these sources of efficacy and thus influence a person's belief in his or her ability to perform a particular task. Numerous studies have demonstrated that perceived efficacy influences every aspect of personal change-whether individuals consider changing behaviors, how hard they will try to change behaviors, how much they change, and how well they are able to maintain behavioral changes.30


The recent work of Thorne and colleagues20 suggests that persons with different chronic and disabling conditions may value certain types of communication. Furthermore, it is essential to remember that even if one is administering a disease-specific intervention, people within diagnostic groups differ in many ways. Thus, it is important to consider other characteristics in the person's life that may influence his or her willingness and ability to engage in health-promoting behaviors. Health-promotion interventions must not only have applicable and accurate content but also strategies that help individuals identify their own needs and goals for health promotion and assistance with meeting their own goals.


After the index intervention has been revised, it is important to pilot test it and carefully evaluate it with a small sample from the population for which the adapted intervention is intended. In a structured group intervention, participants can be surveyed for their reaction to each session. We used a brief 1-page form that asked participants to rate the clarity and usefulness of the class and materials, the knowledge and ability of the instructor, and the most important thing they learned in each session.26 Feedback from this pilot test of the adapted intervention can be used to further refine the intervention.



Given the growing need for strategies to help persons with chronic disabling conditions to promote their health, it is suggested that researchers and clinicians consider using the process described here to adapt existing effective health-promotion interventions. Use of well-developed intervention frameworks with sound theoretical basis and empirical support will enhance the likelihood that new interventions will prove to be effective and enhance the quality of life for persons with various chronic and disabling conditions.



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