Patricia J. Hicks
There are more children with special health care conditions today because of the increased survival rates of children with complex conditions.1 The severity of pediatric chronic illness, as measured by increased mortality of children with chronic conditions, has increased as well, with 34% of childhood deaths attributable to non–injury related chronic conditions reported in 2001, compared with 24% in 1981.2 Children with chronic conditions represent an increasing proportion of hospitalized patients, because of the increase in their prevalence, the increase in severity of their conditions, and a decrease in admissions for acute conditions (as a result of increased prevention and outpatient management of acute conditions). Demand for care of chronic conditions in the ambulatory setting has also risen with increasing rates and recognition of asthma, obesity, attention deficit hyperactivity disorder, other mental health conditions, and many unclassified complex chronic conditions. Gaps in primary care systems for chronic illness, such as the lack of a “medical home” are compounded by reduced health care coverage or access, leaving many families burdened to manage complex conditions with little support.
The psychological and behavioral responses of the family and child to a child’s chronic illness may manifest as one of the more important factors contributing to the daily functioning of the child and family unit; those affected often look to their pediatrician for guidance. The role of the pediatrician in such guidance will change over the course of a child’s chronic condition, with variance depending on the nature of the condition, the functional impairment realized by the child, the adjustment of the child, the parents, the siblings, and to some extent the accommodations provided in the environment of the school and community.
Understanding the potential psychological and behavioral difficulties in children and their families is important for the pediatrician who is overseeing the medical care of the child. Anticipating known risks for psychological and behavioral dysfunction provides care teams the opportunity to address issues early and to offer directed resources for support.
PSYCHOSOCIAL ADJUSTMENT IN CHILDREN WITH CHRONIC CONDITIONS
Although children are said to be resilient and often respond to adverse conditions with good adjustment, children with chronic illness are 2 to 2.4 times more likely to develop a diagnosable psychiatric or behavioral disorder3; children with epilepsy are 3 to 6 times as likely to experience psychopathology as the general pediatric population.4,5 The most common type of psychological or behavioral difficulty seen in chronically ill children is poor adjustment, resulting in difficulties in interactions with peers, low self-esteem, display of externalizing symptoms (such as oppositional behavior), and the experience of internalizing symptoms (such as anxiety). Adjustment to illness impacts adherence to treatment and influences the perception of quality of life for the child and family.
The assessment and management of care of children with chronic conditions are often parsed to a specific subspecialty clinic, determined by the medical problem that is viewed as dominant or of interest to the subspecialist. However, psychological and behavioral aspects of chronic conditions may follow common themes6 that are not served by this sorting. Grouping psychological responses to chronic illnesses into categories characterized by experiences associated with differing conditions, such as life-threatening potential, intrusiveness/pain of treatment, secondary functional and cognitive disability, and visibility/social stigma, provides a noncategorical conceptual approach to psychological adjustment, rather than one that is specific to a particular physical disorder or chronic disease diagnosis. Many7-10investigators have proposed that such a grouping, or noncategorical approach, which focuses on psychosocial commonalities, could enhance the understanding of the impact of chronic illness on the psychological adjustment of children and their families.
ASSESSMENT OF CHILD ADJUSTMENT
When caring for children with chronic conditions, pediatricians should be sensitive to factors that influence child adjustment, such as:
1. Functioning or participation in activities of childhood (play, school performance, communication, and interpersonal skills)
3. Independence in functioning for basic self-help needs
4. Peer acceptance
5. Perception of high self-efficacy in an area of importance to the child and peers
6. Presence of pain or other disruptive symptoms (diarrhea, cough, tics, seizures, etc)
7. Ability to choose or navigate through remaining choices (in medical treatment plan, school, or daily tasks) with a sense of control. Difficulties identified by these functional domains are more likely to yield insight into adjustment problems than analysis or sorting only by diagnosis or severity of condition.
For children with chronic conditions, perception of the presence of classmate social support was found to be the most consistent predictor, and when present, was associated with lower depressive symptoms, state anxiety, trait anxiety, social anxiety, internalizing behavior problems and externalizing behavior problems, and higher general self-esteem.11 Because healthy peer relationships appear to result in a good outcome for children with chronic illness, social-skills training has been suggested for children with newly diagnosed cancer. Social skills selected for intervention should include improving conversational skills; increasing cooperative play, positive peer interactions, peer acceptance, and friendship making; and learning how to handle teasing or name-calling. Social competence enhancement has produced benefits, which may actually increase in time, as studied in long-term survivors of childhood cancer.12,13
MASTERY OVER TRAUMATIC OR STRESSFUL EVENTS
Children with chronic conditions and their families are often required to carry out medical treatment plans that disrupt daily activities, are painful, require additional emotional or energy resources, or in some other way burden the child and/or family. Variation in response is common. As an example, one child may manage a special diet and daily insulin injections without protest and without interruption of age-appropriate play, whereas another child of the same age and disease status may demonstrate opposition to dietary restrictions and experience anxiety during each injection. The latter child is also more likely to experience social withdrawal. In both cases, the context is essentially identical—painful injections, dietary modifications, and activity interruptions that differentiate the child from his or her peers. For this example, as for many scenarios of chronic conditions, the perception of events or conditions as stressful, disruptive, or noxious is related to child-specific and parent-specific cognitive processing of events, rather than simply resulting from the nature of the event or condition itself.14 If daily hassles associated with medical regimens are processed or handled by parents, children, or teachers as significantly stressful, the child and parent will experience a higher level of depressive symptoms and lower levels of general self-esteem will result.15
Cognitive appraisal, or the perceived determination of whether an event is stressful or not, is modifiable to some extent through treatment or interventions such as modifications of the environment to reduce stressful situations or through teaching the child or parent how to incorporate more control or self-management of the stressful task or event. Play therapy or other interventions that produce choice in response or event processing can reduce the perceived traumatic features of many aspects of medical regimens and supportive measures, giving the child mastery over traumatic events and experiences.16,17 Avoidance as an early coping mechanism can be useful for children, but for chronic conditions, avoidance facilitates worry and prevents extinction of the anxiety response18 and cognitive behavioral treatment may offer support for the child to experience distressing events without becoming overwhelmed.
Coping strategies should be directly addressed if adherence to medical management is poor or if parent, teachers, or other adult care providers report undue difficulties in achieving medical care task completion. Significant symptoms of distress and decreased psychosocial functioning are associated with increased risk of nonadherence to medical treatment plans.19 Although adherence to a medical regimen is a complex issue, children and adolescents, like many adults, are not likely to adhere to treatments as outlined by their physicians.19-21 Approximately one-third of all patients fail to adhere to regimens prescribed for acute problems; 50% to 55% nonadherence occurs with chronic disease regimens.22,23
PARENTAL ADJUSTMENT TO THEIR CHILD’S CHRONIC CONDITION
Parents’ behavioral responses to their child’s chronic illness vary greatly within several domains of adjustment, such as coping with loss, processing stress, changing the focus of control, and struggling with financial and care-related responsibilities.
Most reports of parental adjustment describe maternal circumstances almost exclusively. However, in one large Canadian study of 1869 families, 1727 mothers and 1722 fathers were surveyed, with 12.5% of all families surveyed reporting single-parent homes. Approximately 455 mothers and 400 fathers within this community had children with chronic illness—these parents reported seeking 2 to 3 times more mental health treatment than parents of well children in the same study group. The group of parents with well children and those with children with chronic illness did not differ with respect to rate of single-parent home, maternal education, paternal employment, social isolation, or alcohol problems.24 Multiple other studies have shown an increased risk for maternal affective disorders, with some studies showing up to 30% of mothers reporting criteria for one or two disorders.25 However, with few exceptions, these studies have been limited by assessing adjustment at only one point in time. Overall, whereas mothers have increased risk for adjustment problems, good adjustment is possible for the majority of mothers.
Maternal coping and mental health status can influence reports of child adjustment; however, self-rating by children has not correlated well with behavior ratings provided by parents.26 Mothers who have more psychological problems or adopt certain methods of coping perceive their children as less well adjusted than their children report.27 Understanding discrepancies in what a mother reports versus what a child reports of the child’s adjustment calls for additional inquiry with teachers and other adults involved directly with the child before determining the true status of adjustment in the child.
RISK FACTORS FOR PARENTAL ADJUSTMENT DIFFICULTIES
Neither disease parameters nor the burden associated with medical treatment management has been useful in predicting the adjustment of mothers, as reported in children with spina bifida or cerebral palsy.28However, a range of events from direct events, such as hospitalizations, or indirect events, such as loss of career opportunity related to the child’s illness, can cause psychosocial distress in mothers.29Measurement of events has been helpful in assessing the degree of maternal report of adjustment problems.29 A content analysis of maternal-reported stressor events indicated about half were related to the child’s situation, with the most common category relating to school. Analyzing the situation of mothers of such children—for example, in families with children with cystic fibrosis—has helped to provide a basis for a better understanding of what it is like to have a chronically ill child in the family and to give insight into the interventions that might take place in collaboration with the child’s school.30 Careful inquiry into the daily tasks of the medical regimen is necessary to see what strain or burden is experienced by the child’s mother or father. Opportunities to coordinate care with the school or other adult care providers should be addressed at each visit so that the burden of medical management can be understood and then shared as much as possible.
Role restriction, or the extent to which a mother of a child with a chronic condition feels unable to pursue her own personal or career interests, does not correlate in a simple fashion with objective features of the child’s disability status. Rather, the perception of role restriction contributing to adjustment difficulties was associated with low social support, suggesting that mothers with poor adjustment and loss of career opportunities may benefit from greater social support.31 Because social support is gained from career pursuits and personal interests, the challenge is to suggest pathways to alternative support systems. Parents should be encouraged to place emphasis on their remaining options or choices for personal development or social support.
In addition to the self-esteem and adjustment issues associated with parental role restriction, employment status may be affected by the child’s chronic condition.32 Current Medicaid home and community care waivers, which provide additional services in the home or community, have moved children from institutions into their family homes where parents are providing increasing amounts of care. Poor health status, as measured by activity limitations, hospitalizations, disability or chronic condition status, is associated with parental unemployment, which in turn may lead to stress related to financial difficulties. If employment is possible, choice of career is often limited by work hours, benefits, or employer restrictions on absenteeism.
INFLUENCES ON PARENT FUNCTIONING IN THE FAMILY SYSTEM
Family functioning is often strained, with conflict arising from inequities in burden of care, influence of poor adjustment of one parent toward the other, change in normal functioning of play and work (inability to take a break, to maintain employment, or to achieve career/personal growth), and other experiences of lost expectations. Correlation between marital partners’ depressed mood and other aspects of dysfunction has been reported.33,34 Therefore, it is important to include the marital partner’s dysfunction as a source of ongoing stressors. Individuals in a marital dyad may be influenced by each other’s distress directly, as well as indirectly, through reduced partner support.
Family system functional status in families with chronically ill children has not been well studied. One of the better models for study is the child with cancer; the family functioning can be assessed prior to diagnosis and then followed over time after the chronic condition has been diagnosed. In cancer patients whose families were studied 2 months and 20 months after diagnosis of cancer in the child, marital satisfaction was reported to improve as the mother’s adjustment improved. The father’s adjustment in this study did not improve nor did marital satisfaction.35 Assessing family functioning and then offering referrals for counseling or support are critical for these families. Longitudinal studies of parental adjustment across other chronic illnesses has not been undertaken and it is not clear whether results of family system functioning of cancer survivors can be generalized to other chronic conditions.
For parents who are unable to attain their personal or career goals because of the demands of a chronically ill child, role strain (the tension between self-identified role and realized role of the care provider) is said to be present and significant marital adjustment difficulties often occur.36 In families with children with cystic fibrosis, significant differences in roles were reported; mothers assumed primary responsibility for daily medical treatments, resulting in additional variance in maternal depression. Pearlin et al37 proposed an expanded model that integrates the various factors associated with psychological distress in parents of chronically ill children. Role strain in this model is characterized by (1) stressors related to the parenting role (including caregiver activities); (2) frustration of role expectations (expectations and disappointments about the division of labor); (3) role conflict (disagreement about parental roles); and (4) affective exchange (the giving and receiving of affection).38 When using this model, Quittner et al, found that for mothers, role frustration and role conflict were strongly (negatively) associated with marital satisfaction and parenting stress and role function were related to depression. For fathers, disagreement about parental roles and low daily exchange of affection was associated with (poor) marital adjustment and depression. Not surprising, expectations and disappointments about the division of labor were important contributors to adjustment for women but not men, who reported much less disappointment in relation to the division of household and childcare labor.39
Illness-related avoidance coping by both mothers and fathers was associated with a more depressed mood and personal strain.33 Although avoidance coping may be helpful to individuals in early processing of illness, parents who consistently rely on avoidance as the primary coping mechanism experience more dysfunction. When interventions with active coping were undertaken, these parents were able to obtain needed social support from others, yielding a positive feedback from alternative coping strategies.
High levels of family conflict are related to poorer metabolic control and poorer self-care behaviors in children with diabetes mellitus. The disruptive effect of family conflict is one of the most consistent findings across studies and positive family attributes, such as support, warmth, and cohesion, are related to better diabetes self-care behaviors or metabolic control.40 For diseases in which compliance with medical regimens is critical to optimal outcomes, presence of family conflict should be assessed.
IMPROVING PARENTAL ADJUSTMENT
Paternal involvement has been reported to be associated with improved maternal psychological functioning, parental stress, marital satisfaction, and family coping with disease management.41 Paternal involvement in the care of a child or adolescent with chronic illness has demonstrated a positive influence on treatment adherence in the adolescent with chronic illness.42 Increased involvement of fathers in disease management relates to more favorable outcomes in marital satisfaction and family functioning.43 Pediatricians should emphasize the importance of paternal involvement in the medical management of the child and in the daily activities of the child. Suggestions for alternative activities that do not revolve around sports or other physical interactions may be helpful if the child is unable to participate in these activities. Reframing expectations for paternal involvement in medical management and in interactions with the child is helpful to both the child and the family.
Social support and coordination of care at school are identified as interventions that contribute to support of families with chronically ill children. Direct involvement in the development of the Individualized Educational Plan and plans for medical management during the school day is ideally provided by the pediatrician. The pediatrician can assist in the education of the school staff regarding the child’s condition, medical device management, and troubleshooting as well as anticipated treatment needs. When school staff is informed and comfortable with the child’s medical management, the burden of some of the child’s medical care can be distributed to the school, relieving the parents from providing such care during the school day. Parents who are able to pursue other activities during the school day, including exploring roles other than those of the primary caretaker, can become better adjusted through the support that such activities yield. Inquiry about parental engagement in meaningful activities or supportive interactions should be pursued during pediatric visits.
ASSESSING PARENTAL ADJUSTMENT
The pediatrician should assess maternal and paternal coping and adjustment by asking about:
1. Coping strategies (avoidance is not helpful)
2. Social support
3. Assistance/help with medical management (from school, spouse and others)
4. Sharing of other household duties
5. Sharing of responsibilities for other children
6. Assessment of condition of child/adjustment of the child
7. Career or role ambition versus realized role
8. Perception of marital functioning
9. Affective state
10. Financial strain
Regardless of the nature of the chronic condition, if any of these areas are problematic, support should be sought to lessen the burden. Perceived needs or inequities are to be taken as objective measures of parental experience; individual parents will experience identical conditions in very different ways. Although there may be trends within certain groups of patients, careful listening to identify needs is critical. Physician statements, intended to be empathetic, such as “I know what you may be feeling or enduring,” may be heard as dismissive or may lead to loss of physician credibility from the parent or care-giver’s perspective—even if that physician has substantial experience with the same condition in similar family settings. Hence, it may be better to ask well-focused questions about events, functioning and adjustment and then to listen carefully to gain the understanding required to address needs.
Although no one tool properly addresses all events and conditions known to cause stress for families of children with chronic conditions, common categories and themes are present for many families. Coping strategies; behavioral or psychological interventions; or changes in the environment of the school, medical system, or community can be undertaken if the care team has an understanding of the stressful events leading to poor adjustment. Inventories or surveys should not be applied at only one point in time since adjustment and responses to stress change over time and with disease severity. However, it is useful for pediatric care teams to explore a number of areas of potential stress by inquiring of stressful events and conditions. Table 123-1 provides a list of key factors to explore when evaluating the adjustment of children and families to chronic illness management.
Table 123-1. Evaluation of Child and Family Adjustment to the Chronic Illness
Table 123-2. Questions to Explore Siblings’ Status
1. How much time do you spend with the sibling(s) of your child with health care needs relative to the time spent with the “sick” child?
2. Would you characterize your time spent with your “well” child as positive or negative, relative to your chronically ill child?
3. How many times do you find yourself losing patience with your “well” child or children?
4. When it comes to giving attention to your “well” child, do you find yourself too tired?
5. What extracurricular activities or routine activities do you do with your well child or children?
6. Do you feel that you have a good relationship with your “well” child or children?
7. What celebrations has your family experienced with siblings? (eg, awards, birthdays, recognition of accomplishments or achievements?)
Data from Quittner AL, Opipari LC. Different treatment of siblings: interview and diary analyses comparing two family contexts. Child Dev. 1994;65:800-814.
IMPACT ON SIBLINGS OF CHILDREN WITH CHRONIC CONDITIONS
Siblings may be forgotten in the process of carrying out demanding care plans; they may function as a care provider; or they may be overlooked if their needs are overshadowed by the urgentcare needs of the child. Parental resources—financial, temporal, and emotional—may be unduly shifted to the “sick” child, which may result in the expression of externalizing behavior in the sibling, such as oppositional behavior. Mothers of children with cystic fibrosis reported spending more individual playtime with their children with cystic fibrosis than with their healthy siblings.44 Because the medical management of cystic fibrosis in children often requires significant maternal attention, less overall time is available for the well sibling to interact with the mother. Mothers report guilt in the shift of attention to the child with medical needs.30 Other environmental restrictions are often imposed to accommodate the needs of the sick child; these restrictions can impact play, family vacations, and other factors related to mobility such as changing jobs or changing school districts. Aside from sibling–parent time limitations, there may also be a relative unavailability of the mother to attend to the emotional needs of all family members. The well sibling may seek needed attention through externalizing behavior (oppositional or defiant) if his or her needs are not met, but more often internalizing symptoms of anxiety and depression are reported.45Indeed, siblings of children with chronic illnesses are 2 to 3 times more likely than their peers to experience problems with psychological adjustment,46 as reported in siblings of cancer patients before and after diagnosis. Additional stressors for siblings include limited access to information about their ill sibling’s condition, negative peer reactions, and disruptions in social activities. The risk for negative psychological effects in siblings appears to be related to the functional status of the chronic illness as it relates to medical care and attentional needs from the parent and not to the severity of disease.47
Table 123-3. Family Recommended Services
Develop a variety of types of support groups
Provide child and family counseling if needed
Increase availability of recreational and community-based activities
Provide more parent-to-parent support in a variety of settings
Provide opportunities for family-to-family support
Make support groups and activities more accessible
Ensure quality of support provided in support groups
Provide opportunities for youth to meet adults with chronic conditions
Source: Adapted from Garwick AW. Families’ recommendations for improving services for children with chronic conditions. Arch Pediatr Adolesc Med. 1998;152:440-448.
Table 123-4. Resources for Assessment, Support, and Guidance
ASSESSING SIBLING ADJUSTMENT
Assessment of sibling psychosocial behavioral functioning should be undertaken to determine the presence of the following features in siblings: (1) anxiety; (2) presence of oppositional defiant disorder or other externalizing behaviors; (3) difficulty in peer relationships; (4) parental attention and focus on the well-sibling; (5) inappropriate sibling responsibility and participation in the care of the chronically ill sibling; and (6) need for information or assistance with understanding of the condition of the chronically ill sibling.
Often, well children have an unstated resentment, fear, or guilt about thoughts of their chronically ill sibling. Inequities in care and attention are often present and age-appropriate responses of anger, jealousy, and resentment, which are often not discussed, can lead to regret and conflict. Siblings often report worrying about suffering or death in the chronically ill child. These siblings assume a more adult or mature role than other age-matched siblings in families without illness.48 In a study of siblings of cancer patients two years after diagnosis, younger siblings experienced changes in quality of life through restrictions in their social lives, whereas older siblings manifest internalizing symptoms such as anxiety.49 Families who have open communication about feelings, worries and concerns often resolve emotional stressors and overall experience less conflict. Direct inquiry by the pediatrician about the sibling’s perceptions of their role, attentional needs, and family condition may lead to understanding important aspects of the family functioning necessary to direct care or referral. Suggested questions for inquiry are listed in Table 123-2. Facilitated sibling discussion groups are reported to be highly valuable and can help encourage open expression of emotions and contribute to adjustment.50,51
CLINICAL INTERVENTIONS TO ASSIST FAMILY ADJUSTMENT
Chronic illness in a child presents a variety of challenges, some of which may result in an imbalance between demands and resources to cope with those demands. Table 123-3 lists recommendations suggested by families to improve services for children with chronic conditions.55 Interventions to assist in adjustment or preventative measures to reduce mal-adjustment are needed to support optimal outcomes for children and adolescents with chronic conditions and their families. While evidence indicates that the majority of children and their families adjust satisfactorily, it is likely that even those who have accommodated could benefit from bolstering interventions due to the dynamic and development of the child and disease process.
Development of a tailored response to clinic-based psychosocial programs using a public health/health promotion model has been recommended by the Institute of Medicine52 and specified by others53,54 as involving general education about: (1) public agency resources; (2) laws that affect their child’s care (eg, the Individuals with Disabilities Education Act); and (3) Internet links to parent-to-parent support groups. Table 123-4 lists resources that are useful for assessment and guidance of families of children with chronic conditions.