Psychosocial concerns in children with Kawasaki disease

Progress in Pediatric Cardiology 19 (2004) 189 – 194 www.elsevier.com/locate/ppedcard

Psychosocial concerns in children with Kawasaki disease Annette Baker*, Lourival Baptista Neto, Jane W. Newburger, David Ray DeMaso Department of Cardiology, Children’s Hospital Boston, Boston, MA 02115, United States Department of Psychiatry, Children’s Hospital Boston, Boston, MA 02115, United States Department of Pediatrics, Harvard Medical School, Boston, MA 02115, United States Department of Psychiatry, Harvard Medical School, Boston, MA 02115, United States Received 5 June 2004; accepted 25 August 2004 Available online 3 October 2004

Abstract Kawasaki disease can have a lasting impact on children and families, both physically and emotionally. This article focuses on risk factors that influence children’s psychosocial reactions to Kawasaki disease and its subsequent treatment including illness severity, coping style, developmental level, anxiety and mood problems, and family functioning. This review will be based on research studies and clinical experience with the Kawasaki disease population, as well as literature addressing the general response of children and families to chronic physical illness. A thorough understanding of these factors can enable providers to promote resiliency and adaptation in families facing Kawasaki disease. D 2004 Elsevier Ireland Ltd. All rights reserved. Keywords: Kawasaki disease; Children; Chronic physical illness

As with any physical illness, Kawasaki disease can have a lasting impact on children and families. During the acute phase of this disease, parents are confronted with the possibility that their child could acquire lifelong cardiac disease. The initial four to six weeks of the illness are a time of uncertainty, as families wait to see if their children develop coronary dilation or aneurysm formation. While the majority of children in whom treatment occurs in a timely fashion recover without coronary sequelae [1], research data suggest that there may be long-term effects on lipid metabolism [2–4], endothelial function [5] and arterial stiffness [4], even in children without coronary lesions. Because the implications of these findings for future risk of ischemic heart disease are as yet undetermined, children and their families undergo periodic assessment and counseling about known cardiovascular risk factors. The recommendation for long-term follow-up despite the absence of coronary * Corresponding author. Department of Cardiology, Children’s Hospital Boston, 300 Longwood Ave., Boston, MA 02115, United States. Tel.: +1 617 355 7579; fax: +1 617 739 2033. E-mail address: [email protected] (A. Baker). 1058-9813/$ - see front matter D 2004 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.ppedcard.2004.08.013

artery aneurysms may leave families with lingering concerns about their child’s long-term health. In children with coronary artery sequelae, medical visits and testing are more frequent; the severity of coronary involvement determines the subsequent schedule of follow-up visits, testing, medication use and long-term cardiac morbidity [6]. Thus, all parents face similar fears in the early days of Kawasaki disease, but their experiences differ subsequently depending on their children’s coronary artery status. To date, there has been a paucity of research on the psychosocial functioning of children and families facing Kawasaki disease [7,8]. In general, the risk for psychosocial problems appears to affect all physically ill children without significant variation from one type of condition to another [9]. As a result, there has been a research trend away from a specific disease-oriented (categorical) approach toward a more general non-categorical approach. In this latter approach, children and their families are seen as experiencing stress that is due to being ill and not to specific factors associated with a particular disease [9]. In this article, we will focus on risk factors that influence children’s psychosocial reactions to Kawasaki disease and

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its subsequent treatment. These factors include illness severity, coping style, developmental level, anxiety and mood problems, and family functioning. This review will be based on research studies and clinical experience with the Kawasaki disease population, as well as literature addressing the general response of children and families to chronic physical illness. A thorough understanding of these factors can enable providers to promote resiliency and adaptation in families facing Kawasaki disease.

1. Illness severity In the acute phase of Kawasaki disease, irritability is a universal feature. During the acute phase, Kawasaki disease can have direct effects on the central nervous system, including encephalopathy, infarction and aseptic meningitis [10–12]. Unpredictable mood swings and irritability can last for as long as 2 months, adding to the inherent stress of a new diagnosis and subsequent hospitalization. In an effort to determine whether Kawasaki disease is associated with long-term deficits in cognitive, academic or behavioral outcomes, King et al. [7] studied 32 children with a previous episode of Kawasaki disease. Cognitive ability at all age levels was assessed by the appropriate Weschler Intelligence Scale [13,14], while academic achievement was measured by the Weschler Individual Achievement Test [15]. No differences in cognitive or academic measures were found when children with past Kawasaki disease were compared to sibling controls. The mean scores of the Kawasaki disease group corresponded closely to national norms. In the same study, King et al. [7] used the Child Behavior Checklist (CBCL) to obtain parent reports regarding the children’s competencies and behavioral/ emotional problems. In this questionnaire, parents provide information for 20 competency items covering their child’s activities, social relations and school performance [16] There are also 120 items that describe specific behavioral and emotional problems. In addition, teachers of children aged 5–12 years completed the Teacher’s Report Form of the CBCL [17], while adolescents completed the self-rating Youth Self-Report of the CBCL [18]. Mean CBCL parent ratings were below the clinical range for all patients with a previous episode of Kawasaki disease. Parents rated their children with past Kawasaki disease as having significantly more internalizing and attentional behavioral problems than for sibling controls. The teacher and adolescent selfreports detected no behavioral problem differences between the Kawasaki disease group and the sibling control group, suggesting that parents who completed questionnaires may have been overanxious. Patients with coronary abnormalities were not significantly different from their sibling controls. Approximately one-third of parents in King’s study felt that Kawasaki disease had a long-lasting effect on their child, balthough this perception

was often vague and was not related to an increased risk of behavior problemsQ. In a study of health-related quality of life, 110 patients with a previous episode of Kawasaki disease were found to be similar to the normative US population in terms of their psychosocial health, regardless of coronary status [8]. This study used the Child Health Questionnaire-50, which is a well-validated quality of life parent measure that has been used with chronic illness populations [19]. This 50-item parent report form provides physical and psychosocial summary scores. In patients with normal coronary dimensions, or mild-moderate coronary enlargement (b8 mm), physical functioning summary scores were not different from the comparison US population, while the patients with giant aneurysms (N8 mm) had significantly lower physical summary scores when compared with the US population sample. Parents with children in all coronary groups reported lower general health perceptions for their children compared to the general US population sample, suggesting that long-term concerns about their children’s health exist regardless of overall physical health status. The premise that medical severity plays a less significant role in a child’s overall psychosocial adaptation than other risk factors has been supported in other cardiac illness populations [20–24]. Both King et al. [7] and Baker et al. [8] reported that cardiac severity, as classified by coronary abnormalities, demonstrated no connection to psychosocial functioning, supporting the potential resiliency and adaptive potential of children facing more severe Kawasaki disease.

2. Coping style Coping refers to a set of cognitive, emotional and behavioral responses to stressors. Coping styles involve children’s consistent use of particular strategies for managing stressors across contexts [25]. Many researchers have categorized styles as bapproach-orientedQ or bavoidanceorientedQ [25]. Approach-oriented coping refers to behaviors and thoughts directed at addressing or managing the stressor and/or the feelings it elicits, which include medical information seeking, interest in medical play, and seeking social and emotional support. Avoidance-oriented coping refers to thoughts and behaviors designed to avoid experiencing the stressor at the physical, cognitive, or emotional level, which include going to sleep, daydreaming and refusing to ask or answer questions. Coping styles have also been characterized as bproblemfocusedQ or bemotion-focusedQ [25]. Problem-focused strategies are directed at altering the stressor or associated external circumstances, while emotion-focused strategies are aimed at regulating emotional responses to the stressor at hand. The adaptiveness of these two styles depends on the nature of the stressor involved. For medical stressors, emotion-focused coping strategies tend to be more adaptive,

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primarily because the stressor itself (e.g., medical treatment) is unavoidable [25]. Nonetheless, research suggests that there is not a definitive one-to-one correspondence between particular coping strategies and better short-term or long-term adjustment across children. It appears that a more critical dimension is the extent to which the child has a bplanQ for dealing with any procedure [26,27]. The variety and flexibility with which a child uses his or her coping repertoire is also important [28,29]. Variety, flexibility and frequency of adaptive coping increase with age and development.

3. Developmental level As with coping styles, the impact of development level appears uniform to children and adolescent regardless of specific physical illness type. The developmental level of a child can play a critical role in his or her response to any illness. Differences in mechanisms of adjusting to medical stressors according to age group are described in previous publications [25,30–33].

4. Anxiety and mood problems Irritability was previously described as a universal feature in Kawasaki disease. This symptom as well as anxiety, malaise, dysphoria and depression may not only result from the direct effects of medical illness, but also may relate to the situational or reactive (indirect) effects of any acute illness and/or hospitalization. These reactions are generally more problematic in youngsters with premorbid vulnerabilities for anxiety or depression. In addition, fear and/or procedural distress have been linked to parent-reported past negative medical experiences [34]. In children with documented coronary artery abnormalities, cardiology follow-up may be frequent. Those with severe coronary disease are restricted from the most competitive sports. Furthermore, use of anti-platelet and anticoagulant medications proscribe participation in highimpact activities. Follow-up testing may include stress testing, MRIs, echocardiograms and catheterizations. Parents and children are educated about the signs and symptoms of angina and myocardial infarction, and knowledge of cardiopulmonary resuscitation is recommended. A history of difficult, painful or unsuccessful medical experiences may fuel expectations of similar experiences in the future and create distress. As noted previously, studies of behavior and cognitive function [7], as well as psychosocial and physical function [8] in patients with Kawasaki disease are congruent with research that has found children remarkably resilient in adapting to the challenges presented by a physical condition. The majority of children with Kawasaki disease do

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not have identifiable mental health, behavioral, or educational difficulties. In contrast, research has shown that children with chronic medical illnesses have an increased likelihood of emotional disorders [35–39]. Better mental health among children who have had Kawasaki disease may be related to the fact that very few have physical symptoms of cardiac illness.

5. Family functioning The acute phase of Kawasaki disease is a time where parents are facing a complex and life-threatening situation and need an adequate understanding of the issues in order to provide consent for treatment and to participate in decisionmaking with their child’s health care team [40]. During this time, parents are generally anxious and sleep deprived. They are on a rapid learning curve about what to expect over the course of the illness, including the necessity to have more patience and provide comfort measures to their child over the next few weeks. Common coping responses are gaining emotional support, medical information seeking, problem solving, distraction and/or avoidance. A study of parents in an intensive care setting [41] found that parents rarely desire exclusive control over their child’s care, noting that only 25% of mothers sought an active role in the decision-making. About half of the parents were reported to be uninterested in participatory control in the medical patients. These parents willingly relinquished control to trusted staff. The final group was reluctant to give control of medical decisions, yet were unable to achieve a satisfactory level of participatory care. In acute medical circumstances, a calm parental presence is most helpful to children. An anxious parent may model fearful attitudes and behaviors as well as display heightened autonomic arousal. Increased anxiety may actually interfere with response to the emotional needs of child. bDistress promotingQ behaviors tend to involve criticism of the child’s emotional reactions or behaviors, threats or punitiveness. Excessive parental attention (through too much reassurance, empathy, apologies or relinquishing control to the child) to a child’s distress has been associated with increased behavioral problems. Hypothesizing that parental interactions would be more significant predictors of long-term emotional adjustment than medical severity, DeMaso [20] found that maternal perceptions were potent predictors of adjustment in school aged children with pediatric heart disease. Approximately 33% of the variability in emotional adjustment was accounted for by maternal perceptions, while medical severity accounted for less than 3%. Maternal perceptions are concerned with a mother’s feelings regarding her parenting skills and interactions with her children. These perceptions may facilitate or hinder a child’s adjustment through their influence on the mother–child interaction.

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Using a similar study design with craniofacial disfigurement, maternal perceptions as well as maternal adjustment (i.e., levels of anxiety and depression) were more potent predictors of emotional adjustment than the severity of the craniofacial anomaly [42]. Follow-up studies of pediatric heart transplant survivors found that family functioning was correlated to post-transplant functioning, while post-transplant side effect severity did not correlate [21,23]. Studies of children undergoing radiofrequency cardiac ablations [22] and implantable cardioverter defibrillators [24] for life threatening arrhythmias have further supported the importance of family interactions in the quality of life of children facing physical illnesses. While there are no similar studies in parents dealing with Kawasaki disease, clinical experience speaks to the importance of the family’s level of concern and distress in determining an individual child’s level of psychosocial adjustment to the illness.

6. Promoting psychosocial resiliency There remains a critical need for research into better understanding and delineating the specific factors that enhance resiliency and adaptation in children and families facing Kawasaki disease. The psychosocial functioning of children with Kawasaki disease undoubtedly is a function of the complex interaction of several risk factors including illness severity, coping style, developmental level, anxiety and mood problems, and family functioning. A child and his or her family have both strength and vulnerabilities in these different realms that have direct relevance to the youngster’s capacity for healthy functioning. Understanding the developmentally based biopsychosocial aspects of Kawasaki disease provides the foundation for promoting psychosocial resiliency in these children and their families. The following inter-related guidelines may be used to approach the psychosocial needs of the youngsters facing Kawasaki disease. 6.1. Identify psychosocial vulnerabilities early It is important at the time of diagnosis of Kawasaki disease to consider psychosocial risk factors that impact on a child and his or her family. It is particularly critical to evaluate for the presence of family distress and adjustment as well as to screen for premorbid emotional, behavioral or academic problems in the child. Those children with coronary involvement combined with heightened family distress may be at more risk for emotional and behavioral difficulties. 6.2. Be open, honest and age appropriate with children Providing information about their illness at an ageappropriate level directly to children serves many purposes

[25]. First, it helps establish a sense of trust between the child and health care givers that is important to medical adherence. Second, it provides children with a sense of control by making the stress predictable and foreseeable. Finally, it provides an opportunity to assess the child’s level of understanding about his/her illness and to correct any misconceptions. Attempts to spare the child pain actually may inadvertently isolate his/her from needed social support as well as needed education (e.g., may develop misinterpretation of events). 6.3. Give information to parents When faced with anxiety-provoking stimuli, many individuals cope best when provided with a focus for their energies [25]. In medical situations, the provision of open and honest detailed medical information can offer such a focus for parents. It is important to provide detailed information about the expected course of ilness, including all aspects of procedures or medications. Parents may be reassured that Kawasaki disease appears to have no effect on cognitive development or academic achievement [7]. 6.4. Give parents advice about procedures Parents often appreciate guidance regarding how to talk with their child about an upcoming procedure. Physicians and nurses can encourage parents to describe the procedure to their child in simple, straightforward terms. Parents should be encouraged to focus on what their child will actually experience and to avoid excessive detail about parts of the procedure that will not be consciously experienced. Parents should be provided with sensory descriptions of the procedure, particularly what their child will see, hear, smell and feel at all points of the procedure. 6.5. Help parents provide consistency and predictability It can also be beneficial to help parents anticipate a degree of emotional and/or behavioral distress related to their cardiology care [25]. Parents often feel guilty or sad about their child being ill, and may compensate for feelings of guilt by being overly indulgent or permissive with their child. The importance of maintaining family rules, routines and expectations as much as possible should be emphasized. Consistency and predictability can help children maintain a sense of safety when faced with frightening situations. 6.6. Showing feelings is normal and helpful It is reassuring to parents to know that they can show their own sadness and even anger to their children. It is part of a child’s learning experience in dealing with illness. Parental withdrawal may cause fear and even may be experienced as loss. At the same time, feelings that

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overwhelm the youngster are to be avoided. The aim is for balance. 6.7. Be alert for potential school fear Parents of children with Kawasaki disease may report that the school is afraid of their child [23]. This may be particularly true for children with coronary artery aneurysms. The school nurse, psychologist or counselor can work with the parents to provide the necessary education for the teacher and other staff around the illness. A child’s classroom can benefit from information regarding Kawasaki disease, particularly if the child needs to be hospitalized during the school year. This should be done only if the child wants this to occur. Parental permission and review of bwhat will be saidQ is critical. This recommendation is generally most useful for younger children. When children are very young, parental participation is often a consideration. Older children tend not to want to highlight differences from their peers, particularly in the classroom. 6.8. Consider support for coping Children with severe coronary artery abnormalities face the prospect of continued procedures and follow-up. There may be opportunities to help with pre-admission hospital or procedural preparation, as well as the return to school [23]. Preparatory interventions include cognitive strategies (e.g., books, telling child of what to expect) designed to provide families with educational information regarding their illnesses combined with the modeling of and permission for adverse affective responses (e.g., fear, anger). Although difficult to measure, all interventions have been generally viewed as helpful to families [23]. Following hospitalization, these children may need a graduated transition back to school. The provision of tutoring or assistance with homework in situations where children may have fallen behind can be immensely helpful. Individual counseling or family therapy can be helpful for children and/or parents struggling with longer-term issues related to their Kawasaki disease. 6.9. Do not let the illness define the child As with all physical illnesses, it is important to view a child as having had Kawasaki disease, rather than allowing the illness to define whom he or she is. This approach is critical in supporting a youngster’s identity at home and in the school setting. A child should be treated as bnormallyQ as possible within the constraints of their coronary sequelae. 6.10. Offer selected Kawasaki disease websites There are a number of active websites devoted to Kawasaki disease containing content ranging from factual

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Table 1 Selected websites for parents related to Kawasaki disease Aetna Intellihealth www.intelihealth.com/IH/ihtIH/WSIHW000/9339/23825.html Provides Harvard Medical Schools consumer health information Cardiac Experience Journal (Children’s Hospital Boston) www.experiencejournal.com/cardiac or www.experiencejournal.com/ cardiac/clinic/parentguide.pdf Provides narrative stories and videos of families and clinicians facing pediatric heart disease along with a hospital preparation manual entitled, Helping Your Child with A Medical Experience; A Practical Parent Guide. Kawasaki Disease Foundation www.kdfoundation.org Provides support, education and information for families of children and adults with Kawasaki disease. KidsHealth for Parents kidshealth.org/parent/medical/heart/kawasaki.html KidsHealth is the largest and most visited site on the Web providing doctor-approved health information about children from before birth through adolescence. Guide for parents of children who suffer from Kawasaki disease www.pediatrics.ucsd.edu/kawasaki/parentGuide.asp Questions most frequently asked by parents of children who suffer from Kawasaki disease written by Dr. Jane Burns at University of California San Diego Little Hearts www.littlehearts.net A support network for parents of children with congenital heart defects. PediHeart www.pediheart.org Kidzone and Parent’s Place are places to learn about the heart, ask questions and meet other families.

information to narratives describing the experience (see Table 1).

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