The Potential for Reducing Asthma Disparities Through Improved Family and Social Function and Modified Health Behaviors

Supplement ELIMINATING ASTHMA DISPARTIES

The Potential for Reducing Asthma Disparities Through Improved Family and Social Function and Modified Health Behaviors* Joan M. Mangan, PhD, MST; Angelina R. Wittich, MA, PhD; and Lynn B. Gerald, PhD, MSPH

The National Workshop To Reduce Asthma Disparities assembled a multidisciplinary group comprised of scientists, clinicians, and community representatives to examine factors related to asthma disparities. Attention was given to the importance of discerning family, social, and behavioral factors that facilitate or impede the use of health-care services suitable to the medical status of an individual. This review highlights select biopsychosocial factors that contribute to these disparities, the manner in which they may contribute or protect persons affected by asthma, and recommended directions for future research. (CHEST 2007; 132:789S– 801S) Key words: asthma; coping; disparities; family; health behavior; knowledge; psychosocial factors; social networks; social support; stress Abbreviations: ED ⫽ emergency department; IOM ⫽ Institute of Medicine; SES ⫽ socioeconomic status

is a serious cause of morbidity and morA sthma tality in the United States, affecting approximately 14 million people, including men and women, children and adults, and all racial and ethnic groups.1–5 Despite major advances in understanding the etiology and pathophysiology of asthma and the development of new therapeutic modalities, the prevalence, severity, and mortality rates from asthma have all increased over the past decades.6 Hospitalizations for asthma have doubled in adults and increased fivefold for children over the past 20 years. Morbidity and mortality rates appear to be particularly high in urban and minority populations. African *From the Lung Health Center, University of Alabama at Birmingham, Birmingham, AL. The authors have no conflicts of interest to disclose. Manuscript received December 20, 2006; revision accepted August 2, 2007. Reproduction of this article is prohibited without written permission from the American College of Chest Physicians (www.chestjournal. org/misc/reprints.shtml). Correspondence to: Joan M. Mangan, PhD, MST, Lung Health Center, University of Alabama at Birmingham, 618 20th S St, OHB 138, Birmingham, AL 35233-7337; e-mail: jmangan@ uab.edu DOI: 10.1378/chest.07-1908 www.chestjournal.org

Americans are three times more likely to be hospitalized and four times more likely to die from asthma.7–11 Comparable outcomes have been reported for US Hispanic populations, particularly Hispanics from Puerto Rico.3,12 The role of health systems and their administrative and bureaucratic processes in disparities have been examined, as have genetic factors, the environment, and possible gene/environment interactions. In a report by the Institute of Medicine (IOM), titled “Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare,” the authors present evidence drawn from the literature indicating that persistent racial and ethnic discrimination as well as provider’s uncertainty working with culturally diverse patients contribute to unequal treatment.13 Additional contributing factors include patient/provider communications, patient preferences, treatment refusal, and the financial, legal, regulatory, and policy environment in which health systems operate.13 Other researchers6,14 –17 have found strong evidence to support the need to further examine genetic and environmental factors. A multifaceted approach to reduce asthma disparities must also examine and address family, social, CHEST / 132 / 5 / NOVEMBER, 2007 SUPPLEMENT

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and behavioral factors. While the literature repeatedly demonstrates racial and ethnic disparities across a range of illnesses and health-care services, numerous studies find these disparities remain even after adjusting for socioeconomic differences and access to care.13 There are several mechanisms through which family, social, and behavioral factors may contribute to the disparities seen in asthma morbidity and mortality. For example, when quality of life is examined, disparities exist although race is less often a factor.18 –20 Why? Measures of quality of life allow the patient’s perspective of their asthma to be considered as an important outcome. Because this outcome is dependent on the patient’s perspective, it can be strongly influenced by family, social, and behavioral factors. At the same time, quality of life measures are only weakly associated with traditional measures of physiologic impairment such as spirometry.21 Behavioral factors and family social support also influence levels of treatment adherence, decisions to engage in risk reduction (eg, allergen reduction), and care-seeking. These factors, in turn, impact expression of asthma morbidity. In 2002, the National Heart, Lung, and Blood Institute published a workshop summary22 describing approaches for reducing disparities in asthma and recommended research priorities. A large component of the summary addressed the social, cultural, and behavioral aspects of disparities. Emphasis was given to the diversity in beliefs and practices that are based on culture, social class, education, and minority status. These in turn, contribute to the health behaviors (eg, level of adherence), approaches to self-management, and health-care utilization that can lead to asthma disparities. Table 1 provides an overview of this summary. These beliefs and practices may be integrated into the IOM Model of Sources of Healthcare Disparities to create a more robust representation of important patient factors.13 The IOM model presents the interplay between health system characteristics, careprocess variables, and patient-level factors that foster racial and ethnic disparities in health care. To explain the care and treatment provided through health-care systems, the IOM model includes variables such as the following: (1) patient input in the form of the medical history and preferences for care; (2) diagnostic data collected by the health-care provider; (3) the subjective interpretation of diagnostic information; (4) conscious and unconscious stereotyping and prejudices; (5) financial and legal influences; (6) the clinical intervention chosen from multiple treatment alternatives; and (7) racially disparate clinical decisions. Patient input drives many of the variables in this model. At the same time, patient input is invariably influenced by an individual’s beliefs and 790S

practices, as well as family, social networks, social support, stress, coping, and psychological factors. In February of 2005, the National Workshop to Reduce Asthma Disparities was held in Chicago, IL. Workshop participants examined many factors related to asthma disparities and discussed the next steps for the research, clinical, policy, and consumer communities to use in reducing asthma disparities. Attention was given to the importance of discerning family, social, and behavioral factors that facilitate or impede the use of health-care services suitable to the medical status of an individual. Specifically the structures (eg, socioeconomic group, family, social networks, culture, knowledge) and processes (eg, social support, stress, coping, attitudes, beliefs and practices) that create and maintain differences among members of a population and contribute to asthma disparities were examined. Highlighted below are select factors that contribute to the disparities, the manner in which they may contribute or protect persons affected by asthma, and recommended future directions (Table 2).

Social, Economic, and Environmental Interactions Disparities are most apparent among populations with varying levels of socioeconomic status (SES). Significant evidence has demonstrated that a gradient exists between SES and health status, with individuals of high SES having better overall health that those of low SES.23–27 Many hypothesize that the health disparities seen across SES levels are due to health-care access. Yet in industrialized nations with universal health-care systems, an SES gradient exists in all causes of morbidity and mortality, across middle and upper income brackets, suggesting that health-care access alone is not the sole cause. Others propose that low SES may result in poor physical and/or mental health by operating through various psychosocial mechanisms such as discrimination, social exclusion, prolonged and/or heightened stress, loss of sense of control, and low self-esteem.28 –31 In turn, these psychosocial mechanisms can lead to physiologic changes such as raised cortisol, altered BP response, and decreased immunity that place individuals at risk for adverse health and functioning outcomes. A third possibility is that SES is a general measure of educational, financial, and social resources that enable individuals to both live healthier lives and to obtain better health services, even when basic access for all is ensured. This is evidenced by the fact that even societies with universal health coverage also have private medical services that are accessed by those with the money to pay for them.32 Eliminating Asthma Disparities

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Table 1—Reducing Disparities in Asthma Care: Lessons From Approaches to Chronic Disease in Minority Communities Approaches

Characteristics of Effective Programs

Patient education in asthma management

Teaching patients to self-monitor; Providing patients written treatment plans that allow for self-adjustment of medications; Offering or providing regular appointments to review progress of care

Community programs in diverse settings

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Examine psychological factors that contribute to asthma morbidity at the individual and community level

Strategies for Successful Program Implementation

Incorporate a needs assessment in the development of educational programs; Utilize learner-centered teaching methods; Incorporate language of the community; Employ methods appropriate for people with low literacy skills; Link educational programs with clinical care, giving special attention to prevention Incorporate communities in program Emphasize local authority in program development; governance; Acknowledge and incorporate Offer flexibility in program traditional, complementary, and implementation; alternative medicine approaches Develop multiple interventions and biomedical treatment; targeting the same health issue; Avoid focusing only on deficiencies Obtain a patient history that includes when implementing programs; health beliefs and use of folk, home, Demonstrate sensitivity to culture and and alternative therapies used; social class Employ community strengths, such as: extended-family ties, community involvement, traditional heritages of strength and wellness, healthful native foods, cultural sharing, family cohesion, valuation of children

Recent Research Findings

Opportunities for Research Determine how to establish patient programs in different settings; Identify mechanisms to encourage patients to become engaged in the education process; Determine how to address health-care beliefs and attitudes about the seriousness of asthma and the possibility of controlling asthma

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Examine acceptable approaches for integrating cultural beliefs with biomedical treatments; Develop culturally sensitive programs that acknowledge community beliefs and practices; Examine social forces within the environment that shape and support positive and negative behaviors; Identify how cultural beliefs and practices influence health-seeking behaviors and how interventions can build on these influences to maximize behavior change; Disaggregate the effects of contextual factors such as culture, social class, minority status, level of acculturation, and traditional racial and ethnic descriptors; Develop valid, culturally appropriate measures Racial identity may be more relevant to In place of race and ethnicity, use more direct an individual’s cultural practices, variables to examine social and cultural lifestyle, exposure to racism, and attributes of individuals/communities and poverty; their relationship to asthma morbidity; Psychological factors may contribute Examine the role of stress as a mechanism to asthma morbidity, including: leading to asthma disparities psychological state (depression, anxiety, denial), stressful life experiences, personal disposition, perception of symptoms, social support, coping strategies, health beliefs, adherence, and help-seeking behavior

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Table 2—Future Directions and Challenges to the Study of Family, Social, and Behavioral Factors as Contributors to Asthma Disparities Structures and Processes That Can Contribute to Disparities ,-

Future Directions

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Social networks and social support

Examine the differences that exist in social networks that may contribute to disparities; Identify mechanisms to intervene with stressful networks that may negatively impact health; Determine the types of support networks that can impact asthma care and ultimately disparities.

Family,-

Determine the impact of life events on family functioning and how this may impact asthma management; Explore how cultural and ethnic differences in families affect both pediatric and adult asthma management behaviors and outcomes

Stress and coping,

Clarify the temporal relationship between experienced stress and asthma exacerbations, and changes in underlying neuroendocrine and immune indices and airway obstruction; Examine the duration and frequency of experienced stress and their impact on asthma; Develop behavioral interventions aimed at reducing stress and changes in asthma biological markers; Characterize individual vulnerability, in order to demonstrate effectiveness of psychological interventions for asthma

Issues and Challenges To Consider in Future Work Sources of social support include but are not limited to: Peer groups/support groups/mutual aid groups Parents/caregivers Siblings Extended families Health-care professionals Issues to examine within social networks include but are not limited to: Stereotyping individuals with asthma Disease stigma Perceptions of patient’s inability to engage in active lifestyles Patient empowerment Concepts of illness and disease Family characteristics include but are not limited to: Structure/members Activities Cohesiveness Work/home patterns Living arrangements Practices and behaviors Mental health of members Social and economic status Life events include but are not limited to: Community violence Divorce Death of a loved one Illness events (such as hospitalizations) Loss of housing or family move Loss of job or beginning a new job Sources of stress include but are not limited to: Income Food and nutritional status Housing conditions and location Employment conditions and stability Genetic constitution Early life experiences Ongoing life experiences Personality predisposition Mood states Negative emotions Sleep quality Perceptions Coping styles

Sources of attitudes, beliefs, and practices include but are not limited to: Culture Faith or religion Family/social networks Challenges to patient education include but are not limited to: Addressing and modifying perceptions of: asthma control, medications, treatment adherence, and responsibilities to community organizations (ie, report a child’s asthma diagnosis to school staff, available supply of medicine at school); Inventorying and addressing patient/family needs; Changing expectations related to ⬙good⬙ health Fostering positive decision-making in the face of social and economic constraints; Developing cultural competency among persons providing education and within educational materials; Addressing beliefs and practices that conflict with the medical model; Addressing illness experiences in relation to treatment; Providing financial reimbursement to health-care providers for asthma patient education Identify mechanisms to engage parents of children with asthma in preventive self-management behaviors in the face of competing stressors; Acknowledge and reconcile faith-based attitudes and beliefs towards illness and disease to biopsychosocial approaches to care; Asthma action plans must take into account family, behavioral, and social factors relevant to asthma; Develop educational interventions focused on problem-solving and decision-making for effective asthma self-management Knowledge, attitudes, beliefs, and practices,

Issues and Challenges To Consider in Future Work Structures and Processes That Can Contribute to Disparities

Future Directions

Table 2—Continued

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Equally important is the notion that individual behavior and lifestyle choices contribute to disparate health outcomes in lower SES strata.33,34 There have been recent data that indicate when individual behavior and lifestyle choices such as smoking, alcohol consumption, diet, and exercise are corrected for, disparate health outcomes are still observed in lower SES groups. Such findings suggest that access to health care and individual behavior and lifestyle choices are not the major determinants of SES-related disparate health outcomes. Indeed, these results shift research emphasis toward an examination of mechanisms by which social and physical environments may interact with SES to produce health disparities. In the United States, race is closely linked with SES, making the effects of the two factors difficult to separate. Race and ethnicity have often been used as surrogate variables for poverty and material deprivation.22 However, this is not always valid and adds to the difficulties in examining underlying causes for disparities. Additionally, while racial groups share certain genetic attributes, it is important to note that there are limitations to using “race” as more than a social construct. The definitions of racial groups vary across time and location. Also, how a person might classify their race often differs from how others may classify that person.22 Instead, the social and cultural attributes of race appear more likely to significantly affect health status. Moreover, research indicates that race does not appear to affect illness behavior once other social and behavioral factors are taken into account.35 This suggests that race affects health outcomes and disparities through its relation to other behavioral and social factors. For instance, culture affects health through its influence on risk and protective behaviors, the nature of the family and social relations, and the meanings and expectations associated with group memberships (eg, shared beliefs that disease symptoms are part of normal life and should be “toughed out,” causing delays in accessing medical services and increase risk of harm in some minority populations36). Collectively, this evidence provides the basis for the belief that there are multiple social forces that shape and support behavior in different groups of people. In addition, social and physical environments vary for different social groups. Within these environments, certain racial, ethnic, and socioeconomic groups are more severely affected by asthma than others. These same groups encounter multiple barriers (eg, financial constraints, logistical and cultural barriers, and environmental stressors) when attempting to follow health and treatment recommendations. The relationships and mechanisms by which family, social, and behavioral factors contribCHEST / 132 / 5 / NOVEMBER, 2007 SUPPLEMENT

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ute to disparities and affect health-related quality of life either directly or indirectly are complex.

Others64 have indicated that nonfamilial support from a health-care professional has the strongest effect.

Social Networks and Social Support Social networks and social support are interpersonal processes that influence health. Social support is the commitment, caring, advice, and aid provided through relationships or networks of people. These networks can have direct effects on health through emotional and instrumental support.37 They also provide social ties with meanings and obligations that influence health behaviors, thereby influencing morbidity and mortality.37 Research has indicated that social relationships have a significant effect on health,38 – 42 and that parental social networks are related to their children’s health.43 Strong social networks often have a positive effect on health and well-being38,44 – 48; however, some networks can actually create stress or impede positive health behaviors.49,50 Social networks are particularly important in chronic diseases such as asthma where persons must learn to selfmanage their condition in the home. Strong social networks can enhance a person’s sense of selfefficacy, mastery, self-esteem, and facilitate selfmanagement behaviors.51,52 Conversely, nonsupportive networks can impede healthy behaviors and influence quality of life.53 Furthermore, social networks can affect one’s ability to access care, and provide instrumental social support (such as assistance with transportation and child care, and information) as well as expressive social support through caring, concerned relationships. The differences that exist among social networks need to be examined further, characteristics of positive networks quantified, and mechanisms identified to intervene with stressful networks that may negatively impact health. The exact mechanisms by which social relationships affect health also remain unclear.41,54 However, studies have indicated that social support can impact the development of disease and the severity of symptoms,55 and can function as a shield between stress and asthma exacerbations.56,57 The extent of social support has also been shown to be a significant predictor of emergency department (ED) visits and symptoms in asthma patients.58 – 61 There is inconsistency in the literature regarding what type of support is more important, family or nonfamily. Some studies62,63 have indicated that family support may be more important that other forms of social support, particularly in children; such research has shown that parental influence has a stronger effect on adolescent health behaviors than does peer influence. 794S

Family Although the relationship between family functioning and asthma management and morbidity has received little attention in the literature, family support and functioning play a role in health outcomes. There is evidence that the family may serve as a protective factor for health,37,65,66 and act as a buffer from negative life events in patients with asthma.67 Research has indicated that functional families may facilitate adherence and reduce morbidity in children with chronic illnesses,68,69 and even promote recovery from illness.70 Alternatively, dysfunctional families may influence the course of illness by reducing coping mechanisms and problemsolving capacities. Interestingly, while social support seems to be an important factor in asthma outcomes, interventions that attempt to increase social support for families of children with chronic disease have found only modest effects on improving children’s adjustment and maternal symptoms of anxiety, and have had no effects on the activity limitations of the child.71 Family cohesiveness has also been found to have a positive impact on health outcomes,43,72,73 and can be more influential than other forms of social support in improving patient health.72 The extent or degree of family cohesiveness is also positively associated with better health outcomes.73 Even in the case of a small family, such as a single-parent family, health is better when family cohesiveness is high.43 One measure of cohesiveness is the family ritual. Such rituals serve as a protective function for children with asthma even under situations of high stress.74 A patient’s family has a substantial impact on their asthma outcomes throughout their life course. Early family environments shape one’s health beliefs and behaviors, which impacts the way one manages his or her asthma as an adult. Research has demonstrated that the health behaviors of adults are related to those of their parents.75–79 Moreover, people adopt the practices/behaviors of their families, often without conscious awareness, and research reveals that a patient’s family serves as a significant source of health information. Peterson and colleagues80 found that African-American caregivers acquire much of their information on childhood asthma from other family members and from their personal experiences. For children, both their caregivers’ functioning as well as the child’s interactions with a caregiver can Eliminating Asthma Disparities

affect their asthma heath outcomes.81 Studies82– 85 have found the mental health of a mother is predictive of asthma morbidity, including ED use, hospitalizations, and asthma symptoms of their children. Parental psychological well-being and personal outlook also influence reporting of symptoms and quality of life,86,87 perceptions of asthma outcomes, and may contribute to increased asthma morbidity through impaired problem solving skills, inappropriate utilization of health-care services, and reduced adherence.83,88,89 Moreover, family responses to the demands of caring for a chronic pediatric illness can cause detrimental changes to the family as a whole. The stress of inharmonious family dynamics affects immune functioning, which in turn can affect health.90 Family conflict may place children at greater risk for mental and physical health problems including more morbidity from asthma.91–93 For example, increased asthma attacks among children have been shown to be associated with critical attitudes of their mothers.94 –96 Noncompliance is also related to parental criticism.97 Families with dysfunctional members, such as mothers who are depressed, may have limited social networks and coping skills that affect adherence and health-seeking behaviors. Within other families, a child’s illnesses can organize and strengthen the family,98,99 and secure parent-child attachments have been related to fewer problems.100 Families also have more indirect effects on health. In a review of the impact of family on health, Ross et al65 outline several aspects of family that influence health and well-being: marriage, parenthood, and the family’s social and economic status. Being married is consistently and strongly associated with better physical health, psychological well-being, and low mortality. The primary mechanisms through which marriage protects health and well-being seem to include social support and economic well-being. As described above, social support provides one with both emotional and instrumental support. Support from one’s spouse may improve health in several ways such as by improving emotional health, reducing risky behavior, aiding early detection and treatment, and helping recovery. However, some marriages, particularly those characterized by an unequal division of decision-making power, lead to higher levels of distress. The quality of the marriage is the best indicator of whether or not the marriage leads to increased or decreased health and well-being. Married people also have higher household incomes than nonmarried people, and economic well-being is strongly related to health and well-being. Parenthood also has an impact. Generally, children at home decrease adult health and well-being. However, under circumstances when the family is www.chestjournal.org

having no economic hardships and the parents have sufficient emotional and instrumental support, children may not decrease well-being. For some parents, children may provide them with a sense of enduring responsibility that reduces the likelihood of participating in risky behaviors and may increase adherence with medical regimens. The impact of children varies widely by families because children often erode the very things necessary to successfully cope with children: economic well-being and supportive relationships.65 Families are dynamic groups that change over time. A family that may have initially been a positive impact on health behaviors may develop into one that has a negative impact and vice versa. Life stressors that impact the family (such as deaths and job loss) are also likely to be important in the health behaviors of persons with asthma. Therefore, it is important for researchers and clinicians to examine family structure, activities, work/home patterns, living arrangements, and the impact of life events on asthma management and outcomes.

Stress The physiologic impact of stress on psychological functioning, behavior, and the endocrine, immune, and central nervous systems has led researchers to identify stress as a precipitating factor for cardiovascular diseases, endocrine dysfunctions, autoimmune disorders, and cancer. Similarly, high levels of stress have been empirically found to predispose people to asthma, precipitate its development, and predict both asthma morbidity and poorer quality of life.101–107 While researchers108 in the field of psychonueroimmunology (which examines the connections between psychosocial stress, the CNS, and immune and endocrine function) have made inroads toward elucidating how stress and emotions may trigger asthma exacerbations, specific associations between the type of stressor and resulting disease remains perplexing. Plausible explanations for this are within individual differences in psychobiological reactivity, as well as the duration and frequency of stressors.109 In a prospective study of the role of acute and chronic stress in asthma attacks in children, Sandberg and colleagues110,111 reported that children who experienced a severely negative life event in conjunction with chronic adversity have a significantly increased risk for an immediate asthma exacerbation. In addition, children who experienced a severe event in the absence of high chronic stress were at increased risk for an asthma exacerbation in the weeks after the event, following a minor time delay.110,111 Likewise, adults with asthma have been found to CHEST / 132 / 5 / NOVEMBER, 2007 SUPPLEMENT

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experience rapid and significant increases in respiratory symptoms and airway resistance during situations that generate negative emotions.112 Consequently, it is important to explain chronological relationships between the duration and frequency of stress, asthma exacerbations, and changes in underlying neuroendocrine and immune markers. Relaxation therapies and psychological interventions aimed at helping patients to reduce stress or inhibit emotional expression in order to prevent stress-induced asthma episodes have produced mixed results with indeterminate clinical significance. These interventions have also been criticized for their lack of appropriate control groups, small sample sizes and selection of study participants.107,113–117 Yet, data presented in the literature indicate that strong methodologic studies of psychological interventions, guided by explicit theoretical frameworks, to improve lung function and symptom relief for persons with asthma is warranted.118,119

Coping While stress is the physiologic response to perceived (both real and imagined) threats to a person’s mental, physical, emotional, and spiritual well being, coping is the manner in which a person responds and adapts behaviorally, cognitively, and emotionally to environmental or internal circumstances.93,120 Therefore, when an individual judges their coping to be inadequate, the result is psychological stress.121 Adequate coping can facilitate the acceptance of an asthma diagnosis, adherence to medications and self-management regimens, prevent asthma exacerbations or aggravation of an exacerbation, and promote convalescence. Numerous coping strategies have been identified by researchers. Two main conceptual approaches are used to classify coping responses. The first is the orientation or focus of coping, which may be problem focused or emotion focused. Problem-focused coping reflects cognitive and behavioral efforts to master or resolve stressors. Examples of problemfocused coping include planning, information seeking, and active coping; emotional coping includes such responses as venting anger, avoidance, and denial. The second conceptual approach is the method of coping, which encompasses cognitive or behavioral responses. Among persons with asthma, a more emotional coping style has been associated with lower perceptions of control over asthma, quick relief medication overuse and control medication underuse, and increased ED utilization and inpatient hospitalization following an asthma attack.122 Additionally, an emo796S

tional coping style has been independently associated with poor health-related quality of life.51 Coping styles used by parents and caregivers have also been investigated. Eisner and Havermans123 found that the coping strategies employed by the parents of children with asthma varied according to the time since diagnosis, age, and gender of the child. In a study of family adaptation to childhood asthma, Brazil and Krueger124 report differences in coping between mothers and fathers. Mothers reported greater efforts than fathers to engage support from relatives, friends, and neighbors. Moreover, mothers are more likely to develop relationships outside the family, engage in activities that enhance feelings of individual identify and self worth, and find ways to manage psychological tensions and pressures.124 In an examination of coping styles among racial groups, Mailick and colleagues125 found that the caretakers of low-income Hispanic or African-American children with asthma use active coping, planning, and religion most frequently, while the least often employed strategies included restraint coping, denial, and mental disengagement. Barton and colleagues122 propose that the behavioral problems, anxiety, and depression frequently found among individuals with asthma may be predicted from the coping styles used by patients rather than the experience of asthma itself. Therefore, the coping style negatively influences treatment adherence and asthma control rather than the experience of asthma itself.122 Among patients with chronic illnesses other than asthma, measures of depression have been found to be unrelated to the disease itself but may be predicted from the coping strategies used.126 Interventions to improve coping skills of parents or caregivers and persons with asthma have demonstrated improved symptoms, reduced asthma morbidity, and improvements in psychological functioning, especially anxiety.127,128 Yet questions remain over whether coping styles remain stable or change over time, as well as how cognitive development and emotional and personality development impact coping.129

Knowledge, Attitudes, Beliefs, and Health Practices Self-management education for both caregivers and patients facilitates problem-focused coping. An expanding body of research indicates that patients who possess a better understanding of their diagnosis, treatment, and care are able to adopt skills to better manage their disease, experience less asthma morbidity, and reduce their utilization of health-care Eliminating Asthma Disparities

services and lost days of work.130 –132 Additionally, patient education has the capacity to modify patients’ attitudes, beliefs, and skills related to their disease state; recommended medical regimens; and treatment options. Yet to be effective, educational interventions must expand beyond factual knowledge about asthma. Interventions that concentrate primarily on providing information about asthma are not sufficient to improve self-management ability or asthma morbidity.133 While a baseline level of knowledge may be necessary to enable some actions to occur, after this threshold has been met additional information does not automatically bring about added behavioral change.134 Effective self-management programs have been shown to share common characteristics or processes. Summarized by Creer,135 these processes include the following: (1) goal selection, which entails acquisition of knowledge of asthma and its management and setting specific goals that will enable optimal health and well-being; (2) information collection through self-monitoring; (3) processing and evaluation of self-monitoring information; (4) appropriate decision making; (5) action; and (6) self-reaction.135 Mastery of each of these processes enables patients and their caregivers to achieve an understanding of the nature of their disease as well as knowledge and skills necessary to make decisions in response to asthma symptoms and exacerbations. Therefore, it is imperative that health-care providers address with patients the types of decisions that must be made, provide information so that patients may make informed decisions, address the advantages and disadvantages of decision choices, and provide adequate information related to the probable outcomes of decision choices. Erroneous decisions not only affect quality of life for individuals but also may impede recovery or decrease their chances for survival.136 Errors may also be linked to cultural prioritization of illness, differing perceptions of illness and perceptions of risk, or the use of alternative or complementary medicine; therefore, it is important for researchers and clinicians to consider the cultural aspects of education and behavior change. Illness is a socially constructed phenomenon in that the patient’s experience of a disease is dependent on a multiplicity of social forces (such as culture, environment, support networks, and family) that combine to create and modify the experience. Therefore, the “illness experience” is unique to individuals. However, similarities of cultural, racial, and ethnic groups can assist us in determining the experience for differing groups of individuals. This illness experience is important in a patient’s perception of the attributions of the cause of disease, the www.chestjournal.org

severity and symptoms of the disease, and the health behaviors necessary to prevent or treat the disease. These patient perceptions also affect when and why a condition gets identified at a certain point in time and how the person experiences the social outcomes of the illness. It is important to remember that a patient’s experience of an illness is related to much more than just the symptoms experienced. The illness experience is often influenced by broader social perceptions and interactions such as interpersonal crises, perceived interference with social or personal relations, social support from family and friends, sanctioning from other family members, and/or perceived interference with work/physical activity.137 This is, indeed, the reasoning behind measuring quality of life in addition to physiologic outcomes. People feel and act on symptoms in many nonmedical ways and the perceived need to act on symptoms differs by social groups. Differing perceptions of health problems and attributions of causes of disease by race, class, sex, ethnic, and national differences effect compliance, health beliefs, and health-seeking behaviors.138 People do not always experience disease as illness. For example, some people manage to avoid active symptoms, attribute their symptoms to other sources, or in some situations accommodate them. Additionally, what may seem like noncompliance to the clinician may actually be a well-thought-out plan by the patient to avoid medical and social side effects. Perceptions about asthma may differ by cultural/ ethnic group and the words used to describe asthma may vary among different cultures leading to differences in expression of symptoms. Research has indicated that many of these factors, in turn, are related to adherence or health seeking behaviors. For example, the degree of distress during an asthma episode and perceived danger from asthma have been shown to be significant predictors of ED visits.58 Health distress has also been shown to decrease adherence.139 In addition to differing patient perceptions of the disease and need for treatment, clinician characteristics, such as job satisfaction and specialty, can also effect patient health-seeking behaviors.139 Experiences with physicians can influence health-care utilization.140 Physician characteristics such as incongruent values with patient, insensitivity to patient’s complaints, and hurried interactions decrease utilization of health-care services, as does a negative experience with past care. Interestingly, research has indicated that SES has no direct effect on revisiting the doctor; however, it does have indirect effects by way of health, type of practice attended, and experiences with care.140 CHEST / 132 / 5 / NOVEMBER, 2007 SUPPLEMENT

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Future Directions Many family, social, and behavioral factors contribute to asthma disparities both directly and indirectly. The relationships between these factors and the mechanisms by which they contribute to disparities are complex. Family, social, and behavioral factors indirectly affect disparities by affecting the resources (physical, economic, psychological, and social) to which persons have access and the health behaviors they perceive to be important vs those which they neglect. The challenge for researchers is to answer the following questions, “to what extent do these factors drive disparities in asthma prevalence, incidence, and outcomes” and “what are the most effective approaches to counteract the influence of these factors on disparities”?

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