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Coping with Chronic Illness in Childhood and Adolescence
Try out PMC Labs and tell us what you think, chronic dissertation illness pediatric. Learn More. Chronic illnesses and medical conditions present millions of children and adolescents with significant stress that is associated with risk for emotional and behavioral problems and interferes with adherence to treatment regimens.
We review research on the role of child and adolescent coping with stress as an important feature of the process of adaptation to illness. Evidence suggests the efficacy of secondary control coping in successful adaptation to chronic illness in children and adolescents, disengagement coping is associated with poorer adjustment, and findings for primary control coping are mixed.
Avenues for future research are highlighted. Major advances in the diagnosis and treatment of chronic illness in children and adolescents have changed the landscape of clinical pediatrics. These improved outcomes are based on early detection and diagnosis and powerful methods for the treatment and management of many previously life-threatening diseases. As a consequence, millions of children and adolescents in the United States now live with chronic illnesses and medical conditions including type 1 and type 2 diabetes, chronic dissertation illness pediatric, cancer, sickle cell disease, asthma, and chronic pain.
These illnesses and their treatment present children, adolescents and their parents with significant sources of chronic stress that can contribute to emotional and behavioral problems and can compromise adherence to treatment regimens. It is therefore essential to understand the ways that children and adolescents cope with stress to better explicate processes of adaptation to illness and to develop effective interventions to enhance coping and adjustment.
The goal of this review is to highlight recent advances in and findings from research on coping with serious chronic illnesses and medical conditions in childhood and adolescence and to identify important directions to advance work in this field. We begin with an overview of the prevalence of chronic illness in childhood and adolescence and the role of stress in these conditions.
Next we briefly address challenges in defining and measuring coping with illness in young people, highlighting the important role of the perceived and objective controllability of medically-related stress. The central focus of our review is on empirical studies that provide evidence for coping strategies that are effective for children coping the diagnosis, treatment, and long-term effects of chronic illness.
Finally, we outline potentially fruitful areas for future work. We build on a number of reviews on topics related to coping e.
These prior reviews provide important background and context for the current examination of coping with chronic illness in the lives of children and adolescents. Specifically, Van Cleave et al. In general, chronic illnesses are characterized by at least three important features—they are prolonged in their duration, they do not resolve spontaneously, and they are rarely cured completely Stanton et al.
Most of the significant chronic illnesses that affect children and adolescents are characterized by an acute phase surrounding the diagnosis of the illness followed by prolonged stress associated with extended treatment, recovery, and survivorship. Each phase of a chronic illness can present children and their families with significant challenges and stressors. However, there is evidence that chronic conditions may exert greater psychological and physical stress than acute illnesses that resolve quickly Marin et al.
This is consistent with more general models of the adverse effects of chronic stress as a consequence of processes of allostatic load that include the physical and psychological wear and tear associated with prolonged or repeated demands that characterize chronic stress Juster et al. Although numbers vary depending on methods and definitions, by any estimate the scope of the problem is enormous. Epidemiologic studies suggest that as many as 1 out of 4 children in the U.
The prevalence of specific diseases and conditions ranges widely. For example, in the U. alone over 13, children are diagnosed with cancer each year; 13, children are diagnosed with type 1 diabetes annually and chronic dissertation illness pediatric, children live with either type 1 or type 2 diabetes; 9 million children suffer from asthma; 72, Americans all ages live with sickle cell disease; and estimates of pediatric recurrent abdominal pain range from 0.
Type 2 diabetes is still extremely rare in children and adolescents. The scope of the problem is further underscored by the increasing prevalence of chronic illness in children, with the epidemic in childhood obesity driving the increase in a number of other chronic conditions Van Cleave et al. Chronic illnesses in childhood and adolescence are both causes of significant stress and are affected by stress in other life domains.
For example, a child who has been experiencing headaches and nausea is brought to the emergency room by her parents who assume that she is ill with the flu or another relatively benign condition. The family is shocked when they are told that results of a scan identified a tumor in the posterior portion of her brain.
She will undergo immediate surgery to remove the tumor followed by an extensive regimen of cranial radiation therapy. In a second example, the parents of an year-old boy note that he is waking several times each night to urinate. They take him to his pediatrician concerned that he has some form of infection in his bladder only to learn that he has type 1 diabetes.
His illness will require daily monitoring of his insulin and glucose levels and radical changes to his diet and daily activities. These two examples reflect the challenges and stressors of serious chronic illnesses, which are often unanticipated, uncontrollable and functionally impairing for children and their parents.
Further, the acute medical events surrounding the diagnosis of a serious illness are often the beginning of a long process of treatment and adjustment to a chronic condition. For example, treatment of pediatric cancer can extend for chronic dissertation illness pediatric or years, followed by uncertainty about the threat of recurrence and the impact of often significant late effects in endocrine, cardiac, and neurocognitive function Robison et al, chronic dissertation illness pediatric.
The diagnosis of diabetes leads to a life time of monitoring blood glucose levels, administering insulin, restrictions on diet and exercise, and the possibility of significant physical complications. Thus, chronic illnesses present children, adolescents and their parents with the acute chronic dissertation illness pediatric of a diagnosis followed by long-term chronic stress.
This requires careful specification and measurement of the aspects of an illness and its treatment that present stressors and challenges to children and their parents. For example, it is not sufficient to ask how a child copes with diabetes, cancer, or asthma. Each of these conditions includes a range of stressors and challenges for children, adolescents and their families. Research on the stressful aspects of pediatric cancer provides an informative example. Several studies have focused on stressors faced by children with cancer, and most of these studies have examined levels of general life stress.
For example, chronic dissertation illness pediatric, Currier et al. However, relatively chronic dissertation illness pediatric studies have focused directly on cancer-related stressors for children undergoing treatment e. To address this gap, a recent study by Rodriguez et al.
Stressors related to cancer treatment involved feeling sick or nauseous from treatments, chronic dissertation illness pediatric, concerns about changes in appearance, chronic dissertation illness pediatric, and pain and soreness from medical procedures.
Uncertainty about cancer included stress related to not understanding what doctors say about cancer, feeling confused about what cancer is and its causes, and concerns about the future, chronic dissertation illness pediatric. This diverse set of stressors may require very different types of coping, chronic dissertation illness pediatric. For example, coping with missing school and falling behind in school work may be best addressed through active and planful problem solving, whereas acceptance and cognitive reappraisal may be better suited to address changes in physical appearance or cancer-related pain.
For example, more than half of children and parents rated daily role stressors as somewhat or very stressful for children Rodriguez et al. Further, children, mothers and fathers all rated daily role functioning as more stressful than cancer uncertainty for children. These results suggest that near the time of diagnosis children with cancer find impairment in daily roles e.
Therefore, daily role stressors may require the mobilization of the greatest efforts to cope than chronic dissertation illness pediatric sources of stress. After considerable debate and confusion, some consensus is slowly emerging regarding the definition of coping in children and adolescents.
Specifically, coping can be viewed as a collection of purposeful, volitional efforts that are directed at the regulation of aspects of the self and the environment under stress e. Compas et al, chronic dissertation illness pediatric. Current perspectives on coping during childhood and adolescence emphasize the distinction between controlled and automatic processes Compas et al. Coping responses comprise a component of a larger set of the ways that children and adolescents respond to stress.
Automatic stress responses, represented in research on stress reactivity, include temperamentally based and conditioned ways of reacting to stress chronic dissertation illness pediatric emotional and physiological arousal, automatic thoughts, and conditioned behaviors. Coping responses, in contrast, are controlled chronic dissertation illness pediatric volitional in nature—the things that children and adolescents purposefully do to manage and adapt to stress.
Furthermore, coping responses emerge later in development than some more automatic, chronic dissertation illness pediatric, temperamentally based ways of reacting to stress. Therefore, early temperamental ways of reacting to stress provide a context or backdrop for the emergence of coping strategies during childhood and adolescence.
Extensive evidence suggests that coping responses are not universally effective or ineffective e. Rather the degree to which a coping strategy leads to better or worse emotional and behavioral adjustment depends in part on the match between the demands of the stressor and the goals and nature of the coping response. In understanding coping with health and illness related stressors, the controllability or perceived controllability of the stressor may be a crucial dimension in determining the efficacy of particular coping strategies e.
As outlined by Rudolph et al. Rudolph et al. note that this framework encompasses both coping responses and coping goals. A coping response is defined as an intentional action, initiated chronic dissertation illness pediatric response to a perceived stressor, chronic dissertation illness pediatric, which is directed toward either external circumstances or an internal state.
A coping goal is defined as the objective or intent of a coping response, which generally entails some form of stress reduction or reduction in some aversive aspect of a stressor, chronic dissertation illness pediatric.
Both coping responses and coping goals can be organized around the perceived or actual controllability of the source of stress. One of the major challenges in theory and research on coping has been the specification of the structure of coping responses, chronic dissertation illness pediatric.
This is due in part to the nature of coping which, as noted by Skinner et al. This is reflected in the large number of systems that have been used to distinguish subtypes of coping including problem-focused vs. emotion-focused, approach vs.
avoidance, and active vs. passive coping. In their comprehensive review of over subtypes of coping that have appeared in research on coping, chronic dissertation illness pediatric, Skinner et al. It is noteworthy that three of these systems were developed and tested with children and adolescents Ayers et al. Skinner et al. Most relevant to coping with childhood chronic illness, the frameworks of Connor-Smith et al, chronic dissertation illness pediatric.
Second, these frameworks include a factor related to accommodative or secondary control coping, which includes coping efforts to adapt to stress through chronic dissertation illness pediatric, positive thinking, acceptance, or distraction. Third, these frameworks include a factor that reflects passive, avoidant or disengagement coping, chronic dissertation illness pediatric both chronic dissertation illness pediatric and cognitive avoidance of the source of stress.
These multidimensional frameworks of coping been widely applied to theory and research on chronic dissertation illness pediatric and adolescent coping with a variety of different types of stress including stressful interactions with peers e. As described below, these coping frameworks have also guided recent research on child and adolescent coping with chronic illness.
A scholarly review of evidence-based measures of coping in pediatric psychology was recently presented by Blount et al. We will build on this review here and highlight several salient issues in the measure of coping with chronic illness in childhood and adolescence. Blount et al. included general self-report measures of coping e. Because of our focus on chronic illness-related stress, we have not reviewed observational studies of coping with medical procedures and procedural pain.
We focus here on two measures of coping in pediatric psychology that reflect the control-based model of coping of Weisz and colleagues e.
The RSQ was developed to assess primary control engagement coping, secondary control engagement coping, chronic dissertation illness pediatric, and disengagement coping, as well as automatic engagement and disengagement stress responses that do not reflect coping Connor-Smith et al.
Secondary control coping encompasses efforts to adapt to stress, including cognitive reappraisal, positive thinking, acceptance, and distraction, chronic dissertation illness pediatric.
CHRONIC KIDNEY DISEASE IN CHILDREN
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