Behavioral Research and Psychological Issues in Diabetes: Progress and Prospects

Barbara J. Anderson

Ann E. Goebel-Fabbri

Alan M. Jacobson

Over the past half-century, there has been an explosion of research and clinical work focused on the central role of behavioral and psychological issues in the lives and care of persons living with chronic illness, particularly diabetes. Clinicians and researchers alike acknowledge that behavior (i.e., self-management behavior) is the most fundamental source of both the treatment and prevention of diabetes. Moreover, behavioral scientists play an important role in research focused on the prevention and cure of type 1 and type 2 diabetes. As described by Glasgow and colleagues (1), “The most compelling evidence of the complementarity of behavioral science and biology is the observation that clinical advances, such as intensive therapy, islet transplantation, or genetic testing and’engineering,’ raise rather than eliminate behavioral and psychological questions and needs.” In the past decade, behavioral scientists and mental health clinicians have formed the Council of Psychology and Behavioral Medicine within the American Diabetes Association. Behavioral-science research has addressed broad-ranging issues about living with diabetes such as the impact of tight blood sugar control on the cognitive functioning and quality of life of the person with diabetes, how family members can help the person with diabetes live a healthy lifestyle, and what constitutes the most effective treatment for the person with diabetes who also has major depression. Research studies on behavioral and psychological aspects of diabetes are now published in medical journals as well as psychological journals. Most important, this attention to behavioral and psychological issues in the treatment of diabetes has refocused the field on health promotion in living with diabetes and on prevention of the disease itself. The “behavior specialist” is now a recognized member of the multidisciplinary diabetes care team.

We are writing this chapter for clinicians who work with persons living with diabetes. We have attempted to provide an up-to-date review of research progress focused on behavioral and psychological aspects of diabetes that are relevant to the professionals who care for persons with diabetes. We have divided this review into four sections. First we discuss psychosocial issues that are salient at each stage of development across the life cycle. Second, we discuss research on factors that affect adaptation to chronic illness: stress, coping, social and family environments, adherence, and “diabetes burnout.” In the third major section, we focus on new paradigms of the patient-provider relationship. In the format of an “intervention table,” we provide an overview of research on intervention strategies and techniques relevant to practicing clinicians. In our final section, we address special psychological problems that arise in the care of persons with diabetes, such as eating disorders, sexual functioning, and depression. To conclude, we review progress in and suggest prospects for future research on behavioral issues in diabetes.

DIABETES AND THE LIFE CYCLE

At each stage in the life cycle, the individual is confronted with a series of “developmental tasks” or goals in physical, psychological, and social domains. Within this context, diabetes presents
people with unique additional demands at particular developmental stages. Persons with diabetes face the challenge of adapting to each normative developmental stage while balancing the influence of each new stage on the complex tasks of diabetes self-care and management.

The demands of diabetes self-care may exacerbate the pressures of normal development. At each stage of development, family members of persons with diabetes are confronted with the task of being sensitive to the importance of establishing a developmentally appropriate balance between the patient’s need for independence and his or her need for family support and involvement in self-care tasks. This dilemma raises unique issues at different stages of child and adult development for families of patients with diabetes. The struggle to balance independence and dependence in the relationships between the person with diabetes and family members presents major coping tasks for all members of the family.

Childhood

It is well documented that the complex daily regimen of diabetes care can affect every aspect of family life and child and adolescent development (2,3,4).

Although diabetes is relatively rare among infants and toddlers, when it is diagnosed in this age group, the parents or caregivers are the real “patients” (5). Parents are faced initially with the challenge posed by their grief over the loss of a “healthy,” “perfect” child. While still in the midst of this acute adjustment phase, parents must also learn the fundamentals of diabetes care and accommodate their family lives to include the daily tasks of disease management. Many parents, during this first phase of the disease, report increased marital conflict and feelings of depression; however, over time and with greater opportunities for diabetes education, parents report greater confidence and more flexibility in the diabetes regimen (6).

Diabetes in toddlers and children of preschool age presents parents and healthcare providers with the challenge of adapting diabetes care to the toddler’s normal developmental struggle for independence. Children’s natural drive toward autonomy is often reflected in refusals to cooperate when receiving injections or blood glucose monitoring and in conflicts about food. In this way, diabetes can fuel parent-child conflicts that typify this developmental stage. Parents can help foster their child’s sense of independence without compromising diabetes care by allowing children to choose between two snacks, between injection sites, and which fingers to use for blood glucose monitoring. In addition, for children who are finicky eaters, administering Humalog injections after meals may help eliminate parent-child power struggles at mealtimes. Temper tantrums are common in children at this age, but they may also be indicative of hypoglycemia. Many parents identify difficulties in differentiating diabetes-related mood changes from age-appropriate behavior (6). Once hypoglycemia has been ruled out, parents need to set as firm limits as they would for their child if he or she did not have diabetes.

The transition to school is a particularly difficult time for parents of young children with diabetes. Parents struggle with anxiety about their child’s safety and supervision. Parents should be encouraged to take an active role in educating daycare workers, nannies, babysitters, and teachers about signs and symptoms of high and low blood glucose levels, appropriate treatment of hypoglycemia, and the mechanics of blood glucose monitoring and insulin administration.

There is a growing body of evidence that mild cognitive deficits may result from recurrent, severe episodes of hypoglycemia in young children. Researchers using neuropsychological assessments have found significant differences in verbal intelligence, visual-motor coordination, and visuospatial abilities in comparing youths with diabetes to age-matched controls (7,8,9,10). Rovet and colleagues found that children diagnosed with diabetes before the age of 4 years had more frequent hypoglycemic seizures than did children diagnosed later in childhood, suggesting that severe hypoglycemia during the period of brain development may impair later cognitive functioning (10). In light of these findings, clinicians and caregivers of very young children with diabetes must actively avoid the trend toward intensive glycemic control advocated by the Diabetes Control and Complications Trial (11,12). Age-specific blood glucose ranges, aimed at preventing severe hypoglycemia, should be the standard of care for these young patients (13).

Because peer relationships are so important once children start school, it is important to be aware of the impact of diabetes on social functioning. Diabetes during the school-age years can affect the child’s self-esteem. In fact, many studies link low self-esteem in children to poorly controlled diabetes (14,15). For this reason, children with diabetes should be encouraged to participate fully in school-based activities, sports, and clubs that can serve as sources of support for the development of positive self-esteem. For this to be accomplished, children may require individualized care plans in school (16) with changes in lunch schedules and extra time for snacks to prevent hypoglycemia. Parents may need to advocate for their child so that these safety precautions can be put in place to allow for full integration of children with diabetes into the regular school routine. Parents should be encouraged to work with school personnel to ensure that their child misses as little classroom time as possible. The overall goal of diabetes treatment during the school years should include the minimal disruption of successful experiences in school.

Adolescence

Research has consistently shown a decline in metabolic control of diabetes during adolescence—influenced partly by physiologic hormonal changes during puberty and partly by a decline in diabetes self-care during this time (17,18,19). The role of the peer group has been implicated in the decrease in self-care exhibited by adolescents with diabetes. Jacobson and colleagues (20) report that more than one-half of adolescents with newly diagnosed diabetes do not disclose their diabetes to their close friends and that 35% of these teens report that they believe their friends would like them more if they did not have diabetes. Other research has indicated that adolescents will skip needed insulin injections in an attempt to fit in with their peers or out of fear that diabetes self-care will draw negative attention to themselves (21,22). On the positive side, however, research on benefits of peer support for adolescents with diabetes shows that peer and family support in combination is directly associated with the integration of diabetes self-care behavior into daily adolescent routines (23,24).

A final area of diabetes management that poses a particular challenge across child development is the gradual transition of diabetes responsibilities from parent to child. The consensus is growing across research studies that children and adolescents given greater responsibility for diabetes management make a greater number of mistakes in self-care, are less consistent in adhering to their treatment plan, and have poorer metabolic control than those children whose parents remain involved in diabetes management (25,26,27,28,29,30). Results of these studies have led many clinicians to advocate a diabetes treatment approach whereby parents and teens share responsibility for the tasks of diabetes care. This involves open communication between parent
and child to reduce diabetes-related conflicts about out-of-range blood sugars and to encourage a more matter-of-fact, problem-solving approach to blood sugar control. Each family needs to be encouraged to develop its own pattern of parent-adolescent teamwork so that the child with diabetes can continue to feel support for the daily burden of diabetes care and be less at risk for the development of diabetes adherence problems.

Early to Middle Adult Years

In contrast to the extensive empiric literature on child and adolescent development within the context of diabetes, relatively little research has been carried out on adaptation to diabetes during early adulthood. One area of interest has focused on examining the process of transitioning from pediatric management of diabetes to management in the adult healthcare system. In a survey of patients making this transition, Pacaud and colleagues (31) report that up to 50% of the patients surveyed reported delays or loss of regular medical follow-up during this transition period. One way of understanding the barrier to transitions in healthcare providers is implicated by findings reported by Wysocki and colleagues (32) that difficulties in adjusting to diabetes during adolescence persist into adulthood. Studies of this transition period, while rare, argue for the importance of interventions aimed at smoothing the transition of care from adolescence to adulthood. This is especially important for “high-risk” patients who have already been struggling with their diabetes management during childhood and adolescence.

The developmental tasks of middle adulthood are complex and take time to master. These tasks include household and lifestyle management, childrearing, and career management. During the middle adult years, each of these tasks involves acceptance of the inevitable processes of aging, as well as an investment in external social systems. According to Newman and Newman, “The tasks of middle adulthood demand an expanded conceptual analysis of social systems and a capacity to balance individual needs with system goals. The adult not only learns how to function effectively within larger groups, s/he comes to invest energy in those groups with which s/he can most readily identify” (33).

Diabetes imposes conflicts between an adult’s responsibilities for maintaining his or her own health and blood sugar levels and responsibilities for meeting the needs of other family members (34). Few studies have been done on the impact of diabetes in a parent on the family environment of children (35). Interest has centered primarily on understanding the influence of spouse support. Ahlfield et al. (36) studied the impact of diabetes on marriage and quality of daily life. They report that adults with diabetes perceived that the disease interfered with family activities and finances more than did their spouses, who did not have diabetes. Significantly more men than women with diabetes felt that the disease was a source of friction in their marriage.

Shenkel and colleagues (37) reported that the importance of the diabetes treatment regimen to the spouse who did not have diabetes was directly related to level of adherence to the treatment plan in the spouse who had diabetes. Pieper et al. (38) reported that, in a sample of patients 40 years or older who had type 2 diabetes, the higher the rating that nondiabetic spouses gave to the benefits of diet the lower they perceived their ability to help the partner with diabetes. Dietary changes were most frequently rated as the most difficult part of the diabetic treatment regimen. Pieper et al. (38) concluded, “For the married person diagnosed as having diabetes in middle age or later life, lifestyle changes, especially in regard to diet and medications, may impact on marital adjustment. A lack of understanding of the impact of diabetes on the marital relationship may allow a couple to use diabetes to negatively influence their marriage and disease control.”

Pregnancy

The experience of pregnancy for a woman with diabetes is shaped by a number of forces: the development of her self-concept, sexuality, and body image during childhood and adolescence; information she has received about diabetes as it relates to her ability to become pregnant and have a “normal, healthy” baby; the quality of her diabetes control before pregnancy; the presence of any diabetes complications before pregnancy; her access to highly specialized high-risk prenatal care; her resources for coping with the physical demands of diabetes self-management during pregnancy and with the emotional stress related to uncertain health outcomes for herself and the baby; and, finally, the availability of involvement and support from a partner and from her extended family and friends before, during, and immediately after the pregnancy.

Recent research documents the ability of women with diabetes to give birth to “normal, healthy” infants if they have tight blood glucose control at conception and can maintain it throughout pregnancy. More information is now available on the impact of pregnancy on the health of women with diabetes. Women with more advanced ocular, vascular, and renal complications are frequently advised not to become pregnant because of the potential for pregnancy to accelerate these physical complications and cause severe physical disability or even death of the mother. For these reasons, the decision about whether and when to become pregnant is a complex one for the woman with diabetes. Involvement and support from the partner are critical during this stressful decision-making period, especially if there are contraindications for pregnancy.

Medical management of diabetes is especially intense during pregnancy in terms of the frequency of contact with specialists and the daily diabetes self-care that is recommended. Insulin needs often decrease during the first trimester of pregnancy but increase during the second and third trimesters. Throughout the pregnancy, most women must increase the frequency of blood sugar monitoring to at least four times a day because the stabilization of blood-sugar levels is more difficult during pregnancy and because hypoglycemia and hyperglycemia present risks to the developing fetus.

Given the health risks of poorly controlled diabetes during pregnancy, it is surprising that the majority of women with diabetes do not have access to pre-pregnancy counseling. In fact, as few as 34% of women with diabetes receive conception guidance before they get pregnant (39), and fewer than half of pregnancies in women with diabetes are planned (40). Holing and colleagues (40) found that women who had unplanned pregnancies reported that their doctors had discouraged them from getting pregnant, whereas women with planned pregnancies reported that their doctors had reassured them of their ability to have a healthy baby despite their diabetes. Such research underscores the importance of positive prepregnancy education and supportive patient-doctor interactions that allow women with diabetes who are of childbearing age to feel that they can engage in family planning and work with their healthcare team to support a healthy pregnancy.

Despite the research advances and the increased likelihood of the delivery of a “healthy, normal” baby, a great deal of apprehension accompanies a pregnancy in the context of diabetes. In addition to the normal concerns that all pregnant
women experience, the pregnant woman with diabetes must cope with concerns about the impact of her diabetes on the health of her baby and the reciprocal impact of pregnancy on her own health. Research by Langer and Langer (41) found that pregnant women with diabetes were significantly more anxious throughout their pregnancies than were women without diabetes. This increased anxiety may be fueled by the multiple physiologic tests that women with diabetes must undergo in order to assess the health and condition of the developing fetus throughout their pregnancy. The increased work involved in managing a pregnancy in conjunction with the intense emotional experience of the pregnancy make support from the husband or partner an extremely important factor in the outcome of pregnancy in diabetes. Support from extended family and friends also is critical in helping the pregnant woman maintain the discipline and emotional stability needed for the duration of the pregnancy.

Late Adulthood

In the later adult years, the primary developmental tasks concern the redirection of energy to new roles and activities, the acceptance of one’s life and the physical and cognitive changes associated with aging, and the development of a point of view about death. Retirement requires many persons to find new outlets for their intellectual capacities and social supports. Little has been written about diabetes in the later adult years. Empiric data on coping issues facing the elderly patient with diabetes are not available. Retirement can place financial constraints on patients with diabetes, who may no longer have the same access to healthcare reimbursements through private employee-based health insurance.

Compared with their functioning in middle adulthood, later adulthood is a period when the normal physical deterioration of the aging process in combination with the onset and progression of diabetes complications realistically limit the functioning of many elderly patients. Moreover, elderly patients with diabetes frequently cope with multiple medical conditions and multiple complex medication schedules simultaneously. Thus, it may be difficult for family members and elderly patients to distinguish the deterioration related to the normal aging process from the progression of diabetes complications. Worry, frustration, and alienation may result from the decline in level of functioning. Moreover, depression is a serious and underrecognized problem among the elderly. In the patient with diabetes, depression can decrease their motivation and energy for diabetes-related self-care.

Healthcare professionals caring for elderly patients with diabetes must be alert to the need to assess issues of functional status. As such, they are encouraged to assess the patient’s level of manual dexterity, quality of vision and hearing, and ability to be physically active. The functional status of each patient influences his or her ability to carry out the complex tasks of diabetes management; including administering medication doses accurately, monitoring blood glucose regularly, inspecting their feet, remembering medical recommendations and appointments, preparing meals, and engaging in exercise. If self-care abilities decline, flexible arrangements need to be made for greater family or professional involvement in diabetes treatment and decision-making. Younger family members find that they must become educated in diabetes and make decisions concerning living arrangements for an elderly parent with diabetes who is no longer able to inject insulin independently, to take medications at appropriate times, or to eat reliably.

In summary, across the life span—from infancy to the later adult years—the struggle to balance independence and dependence in the relationships between the person with diabetes and family members, especially with respect to self-care, presents unique coping challenges for patients with diabetes and their families.

ADAPTATION TO CHRONIC ILLNESS

One of the most significant outcomes of the growth of the fields of health psychology and behavioral medicine has been publication of scientific evidence of the contribution of psychological and social factors to human health, particularly to adaptation to chronic health problems, such as cancer, heart disease, stroke, and diabetes (42). This has led to a wide acceptance of the interplay between psychosocial factors and biologic outcomes in both type 1 and type 2 diabetes. Three broad psychosocial factors that impact a person’s adaptation to chronic illness are stress, coping ability, and the social and family environment. Although these factors interact, each will be considered separately for purposes of review.

Stress

Numerous reports have examined the influence of emotionally stressful experiences on health status. For example, Rahe et al. (43), using scaled measures of life events, found that acute medical illnesses tend to occur at times of change. Other studies suggest that stressful experiences can be important etiologic factors in the pathophysiology of disabling chronic conditions, such as coronary vessel disease (44). The course of a chronic illness such as diabetes can also be affected by stressful experiences (45). Studies often emphasize the additive effects of multiple stressful life events. In addition to the number and intensity of these life events, their particular meaning to the individual also contributes to their ultimate influence on health status (45,46,47).

STRESS AND DIABETES ONSET

Interest in examining the role of psychological or environmental stressors in diabetes has a long history. Early reports (48) suggested that the onset of type 1 diabetes may be triggered by psychological stress in a physiologically susceptible individual. Stein and Charles (48), using retrospective documentation, found a higher prevalence of disturbances in infant feeding patterns in a small group of diabetic children than in their siblings. Since psychological stress can alter activity in the sympathetic nervous and adrenomedullary systems, elevate plasma cortisol levels, possibly enhance the secretion of glucagon and growth hormone (49), and affect immune functions (50), a theoretically relevant set of biologic pathways are present that could mediate a relationship between psychosocial stressors and diabetes onset. Indeed, some animal studies using the BB rat as a model of type 2 diabetes have indicated that an increase in environmental stress shortens the time to onset of overt diabetes mellitus (51).

Although stress, both psychological and physical, has been shown to have major effects on metabolic activity and has long been suspected of playing a role in the onset of type 1 diabetes (52), there is no solid evidence base for this connection between stress and diabetes onset. However, recent research in genetics, immunology, and endocrinology has identified a multicomponent model of the pathogenesis of type 1 diabetes that links autoimmune destruction of insulin-producing pancreatic β-cells with genetic and environmental factors. Existing studies of the role of stress in the development of type 1 diabetes have been limited by methodologic problems, including small subject samples and a reliance on retrospective accounts of major life stressors (52,53). Despite methodologic limitations, existing
studies suggest that individuals with type 1 diabetes are more likely to report a major life stressor or family loss prior to the onset of symptoms of diabetes (48). A provocative recent paper by Thernlund and associates (54) reported that stressful life events during the first two years of life distinguished children who developed diabetes from matched healthy controls. The hypothesis is that major stressors, including illnesses, occurring early in the life of a genetically susceptible individual could impair immune function during this critical developmental period, which over time triggers the onset of type 1 diabetes.

Another recent line of research has examined the role of stress as a trigger for type 2 diabetes. Surwit and colleagues (56) noted the “mounting experimental evidence of altered sympathetic nervous system activity in type 2 diabetes” identified from several animal models. They have demonstrated that ob/ob mice differ from their lean littermates in having exaggerated blood glucose responses to environmental stressors and to the exogenous administration of epinephrine (55,56). Other research suggests that ob/ob mice may have enhanced adrenergic responses to environmental stress (57).

Research on obese but otherwise healthy men (58) shows that they exhibit an alteration in autonomic nervous system functioning—specifically a decrease in sympathetic and parasympathetic activity—associated with an increase in body fat. This finding indicates that a disordered homeostatic mechanism may exist that could promote excessive storage of energy by decreasing sympathetic activity but at the same time defend against weight gain by decreasing parasympathetic activity.

It is not clear whether these and other changes in neuroendocrine activity are causative, are related to the onset of hyperglycemia and/or hyperinsulinemia, or are simply chance findings without significance for the problem of type 2 diabetes. However, this is an area in which further research may elaborate the role of stress and central nervous system control in the onset and course of type 2 diabetes. There is consensus that type 2 diabetes is strongly genetically determined and most likely is polygenic and heterogeneous. Genes involved in some subtypes of type 2 diabetes have recently been identified (59): “There has been clear demonstration that obesity, physical inactivity, and other lifestyle factors are important environmental risk factors for the development of type 2 diabetes in the genetically-susceptible individual.” Further research is needed to clarify the interplay between genetic factors, lifestyle factors, obesity, and stress in the onset of type 2 diabetes.

STRESS AND THE COURSE OF DIABETES

Stress has both direct and indirect effects on outcomes in chronic illness (60). It has been postulated that stress may affect the course of diabetes either directly through the stress hormones affecting blood glucose levels and insulin metabolism, or indirectly, through stress producing changes in self-care behavior (61). Stress, both psychological and physical, has been shown to have direct effects on metabolic activity (62). Physical stressors, such as illness or trauma, have been shown to cause hyperglycemia and eventual ketoacidosis in persons diagnosed with type 1 diabetes (63). Among children with type 1 diabetes, epinephrine infusion produced more elevated blood glucose levels and more rapid ketone release than among children without diabetes (64). Recent work examining negative life events among individuals with type 1 diabetes has suggested that these types of stressors have an adverse effect on glucose control (63,65). In contrast, studies of the effects of laboratory-induced stress on glycemic functioning of individuals with type 1 diabetes have been more equivocal (66). Possibly, differences across studies in the types of laboratory stressors investigated (e.g., noise, mental arithmetic) may have contributed to the contradictory findings, as not all subjects may find these experiences to be stressful. Indeed, studies examining the effects of stress hormones on glucose control have produced more consistent findings (62). Some research has suggested that there may be “stress-reactive” subgroups of individuals with diabetes for whom stress mainly affects metabolic control through direct physiological mechanisms (67,68).

In addition to a direct effect of stress on metabolic activity, stress has an indirect effect on metabolism by influencing the self-care behaviors of the person with diabetes, which in turn have an impact on metabolic control. Stressful events distract the person with diabetes from usual patterns of self-care. Stress causes disruptions in routines and decreases in resources and supports that are likely to result in less stable patterns of self-care behavior for patients with diabetes and their families. Thus, to the extent that the person’s self-care behaviors are influencing metabolic control, by disrupting self-care behavior, stress indirectly influences metabolic control.

In summary, there are intriguing suggestions from initial studies of animal models of diabetes that psychological and physical stress may play a role in the onset of diabetes, especially type 1 diabetes. Definitive conclusions linking stress with the onset of either type 1 or type 2 diabetes await further multidisciplinary research. The evidence is stronger that stress affects the course of diabetes, both through a direct neuroendocrine effect and an indirect behavioral effect on the metabolic control of the person with diabetes.

STRESS AS A CONSEQUENCE OF DIABETES OR DIABETES-SPECIFIC DISTRESS

Health psychologists have recognized that in addition to the possible effects of stress on the onset or course of various chronic physical illnesses, “the chronic illness itself and its required treatment also constitute stressors that the individual must confront” (60). Polonsky and colleagues at the Joslin Diabetes Center (69) led one of the first scientific efforts to identify these diabetes-specific stressors. Moreover, this group has developed and validated a measure of diabetes-specific distress—PAID (P roblem A reas i n D iabetes). Because of the innovative and important perspective that understanding diabetes-specific distress can have for healthcare providers, in this section we list the 20 sources of diabetes-specific distress that affect patients that were identified by Polonsky and associates and measured in the PAID measure (69,70,71).

Not having clear and concrete goals for diabetes care
Feeling discouraged with the diabetes treatment plan
Feeling scared when thinking about living with diabetes
Uncomfortable social situations related to diabetes care (e.g., people nagging about what to eat)
Feelings of deprivation regarding food and meals
Feeling depressed when thinking about living with diabetes
Not knowing if moods or feelings are related to diabetes
Feeling overwhelmed by diabetes
Worrying about low blood sugar reactions
Feeling angry when thinking about living with diabetes
Feeling constantly concerned about food and eating
Worrying about the future and the possibility of serious complications
Feelings of guilt or anxiety when off track with respect to diabetes management
Not “accepting” diabetes
Feeling unsatisfied with the diabetes physician
Feeling that diabetes is taking up too much mental and physical energy every day
Feeling alone with diabetes
Feeling that friends and family are not supportive of diabetes management efforts
Coping with complications of diabetes
Feeling “burned out” by the constant effort needed to manage diabetes

Weinger and Jacobson (72) have demonstrated that higher levels of diabetes-specific distress in adults with type 1 diabetes relate to poorer metabolic control as well as to lower self-reported quality of life. Future research is needed to identify strategies for preventing diabetes-related distress and for intervening with patients overwhelmed by the stresses of living with diabetes. We now address the wide variation seen in how persons handle these diabetes-specific stressors as well as the stress of chronic illness.

Coping Ability

Coping is a broad construct that generally refers to “the strategies that people use to manage and master stressful circumstances and to minimize the negative impact of life stressors on psychological well-being” (73). The concept of coping introduces the concept of “person” or “individual difference” factors that influence an individual’s adaptation to the stresses of chronic illness. From a biopsychosocial model, these individual factors (such as self-esteem, health beliefs, personal models, ego strength, and personality) affect and are affected by other factors in the model (social environment, disease itself, healthcare system).

Differences in coping styles and personality types influence the appraisal of stress (74) and therefore can affect the individual’s experience of what constitutes a stressful life situation. Such individual differences may affect not only the emotional and behavioral consequences of stress, as noted earlier, but also the hormonal components of the stress response in cardiovascular illness (75) and perhaps in diabetes (76). Similarly, Wolff et al. (77) found that variations in personal coping styles are associated with variations in corticosteroid levels of individuals under stress.

Clearly, individual differences color the meaning and experience of being ill as well as the specific problems posed by that illness. These differences influence the management of a complex chronic illness such as diabetes. Understanding such individual differences can contribute to the thoughtful design of treatment plans.

Studies of a pattern of individual differences in response to the diagnosis of diabetes failed to identify a “diabetic personality” and proved unproductive overall (78). This led to study of the “cognitive and behavioral” strategies patients use to manage diabetes and their emotional responses (79). First, we need to consider the major set of coping tasks that face the person diagnosed with a chronic physical illness such as diabetes. Moos and Tsu (80) identified seven fundamental “adaptive tasks” with which the person with any chronic illness must cope:

Dealing with pain and incapacitation
Dealing with the hospital environment and special treatment procedures
Developing adequate relationships with professional staff
Preserving a reasonable emotional balance
Preserving a satisfactory self-image
Preserving relationships with family and friends
Preparing for an uncertain future

Coping skills is the term used to describe those individual differences in the ways in which persons face and handle stressful tasks such as those above.

Lazarus and Folkman (81) suggested that the coping process begins when a person appraises or evaluates the stressful situation and that the person evaluates both the stressful aspects of the situation as well as his or her ability to deal effectively with these stressors. Within this theory, individuals cope with stress in one of two major ways: by attempting to change the nature of the stressful situation (problem-focused coping) or by managing their emotional reactions to the stressful situation (emotion-focused coping) (74). Emotion-focused coping is described as directing energy away from the source of stress, by avoidance, denial, or distraction. Problem-focused coping refers to efforts to resolve the problem, to focus energy and resources on solving the problem or reducing stress. Studies with adolescents with type 1 diabetes give conflicting results about the relationship between these two types of coping skills and level of metabolic control (82,83). However, in studies with adolescents, consistent associations have been reported between self-care behavior and type of coping skill, with emotion-focused coping associated with poorer levels of self-care behavior (84,85).

COPING AND THE COURSE OF DIABETES

An increasing number of systematic studies point to the influence of individual characteristics on the course of diabetes, with respect to management (adherence), metabolic control, and overall adjustment (86,87). Self-esteem is one of the aspects of personality important in adaptation to diabetes. High or robust self-esteem may serve as a protective factor in a patient’s adjustment to the vicissitudes of this complicated illness and to the potentially confusing, and at times inadvertently hurtful, responses of significant others such as family members, close friends, schoolmates, and colleagues. Along these lines, Jacobson et al. (88) have found that preadolescents and adolescents with low self-esteem had lower levels of adherence at the time of diagnosis and over time than did those with higher self-esteem.

Several studies have found that other aspects of patient adjustment and coping ability are linked to adherence and glycemic control (88,89). For example, a number of investigators have considered how the patient’s level of socioemotional (ego) development may bear upon his or her experience of and response to type 1 diabetes. Ego development reflects the individual’s maturation along the lines of impulse control, moral development, cognitive complexity, and interpersonal relationships (90). Barglow and colleagues (91) found that ego development was the best predictor of an adolescent’s responsiveness to a brief intervention designed to enhance adherence and glycemic control. In contrast, psychopathology was not associated with the response to the educative intervention. These findings and theoretical considerations suggest that the level of ego development a patient has achieved can affect the benefits of educational and medical interventions designed to improve metabolic control, adherence, or coping strategies. Researchers have suggested that a higher level of ego development may provide an individual with the cognitive and emotional maturity needed to deal effectively with the demands of having a chronic illness (92). Further research is needed to develop interventions that are either tailored to individual differences in psychosocial functioning or designed to alleviate problems in psychosocial functioning that impede adherence among patients with diabetes.

COPING WITH THE DIABETES REGIMEN: REALISTIC EXPECTATIONS AND READINESS TO CHANGE

It is well documented that most people living with diabetes find it difficult to adhere to the daily demands of the diabetes medical regimen. According to Rubin (93), coping problems are
common among people with type 1 and type 2 diabetes “largely because the demands of diabetes management are so substantial and unremitting. Specifically, the regimen is demanding and unpleasant, factors outside the patient’s control often affect glycemic control, and the avoidance of diabetes-related complications cannot be guaranteed.” It is paradoxical that although it is widely recognized that the treatment demands placed on the person with diabetes are complex and burdensome, many clinicians, family members, and patients themselves expect “perfect” adherence to this regimen. This expectation of “perfectionism” has been documented as one of the primary causes of “noncompliance” (94) and “diabetes burnout” (95). Clearly, having realistic expectations for the patient’s self-management behavior is an important aspect of the coping process.

It has recently been recognized that the patient’s “readiness to change” influences the process of coping with the demands of diabetes (96). Prochaska and DiClemente (97) suggest that patients can be identified as being in one of six stages of change—from “precontemplation,” in which individuals are not currently engaged in behavioral change and do not intend to change, all the way to the “maintenance” stage at which individuals have made a healthy behavioral change and have maintained it for 6 months or longer. Future studies of the link between coping style and diabetes self-care must include these dimensions of realistic expectations for self-management behavior and of patients’ “readiness to change.”

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