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Psychosocial Assessment of Children with Chronic Physical Disease
Symposium on Chronic Disease in Children
Psychosocial Assessment of Children with Chronic Physical Disease ] ohn M. Leventhal, M.D.*
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Living with and adjusting to a chronic physical illness can present major problems for the child and family. Although many children and their families make reasonable adjustments and lead productive lives, they all experience pain and suffering. As noted in the previous articles, the developmental, psychological, and social effects of a chronic illness can be profound. Comprehensive care for these children and families, therefore, should include specialized psychosocial care as well as specialized medical care. Providing this psychosocial care, however, is difficult because families are often very troubled, clinicians often fail to understand how the disease is affecting the child and family, and alleviating the suffering (without being able to change the medical prognosis) is a complicated task. Since management is impossible without appropriate detection of problems, this article will provide an overview of the psychosocial assessment of the child and family. In performing a clinical assessment of a child with a chronic physical illness, there are six major questions that should be addressed. Two questions concern the illness and its physical effects on the child; two concern the developmental and psychosocial effects on the child; and two concern the effects on the family. These questions are: 1. What is the extent of the disease and its complications in the child?
2. stance, fibrosis 3.
What are the physical effects of the illness on the child? For inhas the child with leukemia lost her hair? Is the child with cystic growing poorly and delayed in the onset of puberty?
How has the illness affected the child's performance at home, with peers, and at school? Can the child with asthma run with friends on the
Many of the ideas presented in this article were developed while collaborating with Barbara F. Sabbeth, Ph.D., and Eleanor B. Emmons, A.C.S.W., on a study of relationships between health-care clinicians and families. This study was supported by the W. T. Grant Foundation and the March of Dimes. *Associate Professor, Department of Pediatrics and Child Study Center Yale University School of Medicine; Attending Pediatrician, Yale-New Haven Hospital, New Haven, Connecticut
Pediatric Clinics of North America-Vol. 31, No. 1, February 1984
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playground? Can the child with spina bifida get to the bathroom without assistance? 4. How has the child adjusted to the illness, including an understanding of the disease, a view of self, and relationships with important people in the child's life? For instance, what does the child with spina bifida understand about the disease and her inability to get to the bathroom by herself? How has this inability affected her view of herself and her view of her parents, who need to assist her? 5. What impact does the child's illness have on the family and its members? The impact may come in the form of special meals or equipment, having to perfom postural drainage on the child, increased medical expenses, decreased social activity for the parents, or the decision not to have more children. 6. How has the family adjusted to the special impact or burden of the illness? Has the father taken on a second job and how has that affected his relationship with his child, spouse, and other children? Is the mother depressed because of the constant difficulties in caring for the child or has she been able to get help from family, friends, and community services so that she is not depressed and can function effectively? Physicians are especially trained and skilled at collecting data to answer the first two questions. A detailed history about the course of the illness, a complete physical examination, consultation with subspecialists, and laboratory data reveal the extent of or changes in the disease and the physical effect of the disease on the child. Although the remaining four questions are often harder for physicians to answer, information can be collected in a similar manner. The history can focus on the child's and family's adjustment to the illness as well as the course of the illness; the consulting specialists might include a social worker, child psychiatrist, or other mental health worker to provide a clearer understanding of the family's adjustment; and the laboratory data can include appropriate tests such as intelligence tests, achievement tests from the school, or personality tests.
CHILD AND FAMILY PROFILES OF FUNCTIONING To assess the developmental and psychosocial consequences of the disease on the child and family (and therefore to answer questions 3 to 6 listed above), data can be gathered in a systematic manner. This is best accomplished by developing profiles of the child's and family's functioning (Tables 1 and 2) so that strengths and weaknesses (or vulnerabilities) can be delineated. These profiles can help to organize how psychosocial data are collected. All of the information to these profiles certainly cannot be collected at one visit; rather this information is gathered over years of a relationship between the family and clinician or team of clinicians. In collecting these data, it would be unrealistic to expect the same depth of data or complete profiles on each child and family. A more reasonable approach would be to use these profiles as an outline of important variables that can be assessed in a psychosocial screening; when problems are detected, a more in-depth profile can be obtained. The details of the data and the way the questions are focused depend on many factors, including the child's
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Table 1.
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Child's Profile of Functioning
Personal Growth and Development Tasks of daily living Cognitive functioning Motor skills Style of performance Emotional and personality development Relationship with Family Members Parents Siblings Activities Outside the Home School performance Peer relationships Response to the Illness Understanding of the illness Participation in care
age, the specifics of the illness (such as its visibility, types of limitations, modes of treatment, and prognosis), the length of time the child has had the illness, and the relationships between the family, the child, and the clinicians. CHILD PROFILE
Table 1 shows an approach to organizing the child's profile of functioning. There are four major headings: (1) the child's personal growth and development, (2) the child's relationships with family members, (3) the child's activities outside the home, and (4) the child's response to the illness. To obtain a complete profile, the pediatrician or team of health-care providers collects data about the variables under each of the major headings. Personal Growth and Development Variables under this heading are concerned with the child's physical, intellectual, motoric, and emotional growth. The variables have been Table 2.
Family Profile of Functioning
Parents' Relationship with the Ill Child Views of and behaviors toward child Meaning of the illness Other Parental Roles Parents as individuals Marital relationship Parents' relationship with siblings Siblings Response to the Illness Understanding of the Illness Management Special Accommodations Support Systems
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broadly defined, although each can be subdivided into finer details of the child's functioning. Tasks of Daily Living. These include eating, sleeping, toileting, dressing, and special tasks related to the care of the illness. Information can be collected in each of the areas to determine how the child performs these skills. Since limitations in the child's performance make the child more dependent on the parents, and often on other important adults such as teachers, the pediatrician will be interested in the specific limitations as well as how these limitations affect the child's psychological development and relationship with his or her parents. The basic information about eating should include the range of the child's diet and what mealtimes are like in the household. Eating and food become even more important in certain diseases. For instance, in diabetes, more details are required about what is eaten (which might be obtained by the dietician), how meals are managed, what the parents do about the child's cheating or stealing offood, and how much of the parentchild relationship is focused on issues of controlling the child's diet. Information about sleep should include where the child sleeps and whether there are any problems with the child falling asleep or awakening at night. Following hospitalization, children may have difficulties sleeping. The child's illness may also affect the parents' sleep. For instance, parents whose child has a respiratory problem or was a premature infant might be anxious about whether the child will stop breathing. This anxiety might lead to the child's sleeping in the parents' bed, or the parents checking on the child every hour so that neither the parent nor child can sleep well. For most children with a chronic illness, it is enough to know how the parent is toilet training the child, or in older children, whether there are any problems with enuresis or encopresis. In special circumstances-for instance, a child with ulcerative colitis-it would not be unusual for the entire family to know the child's bowel habits. How upsetting is this invasion of privacy for the older child or adolescent? If a child with a chronic physical illness requires assistance getting to the bathroom, the physician should be interested in learning what arrangements have been made for the child at home and at school and how these arrangements are affecting the younger child's mastery of bodily functions or the adolescent's psychosexual development. Dressing and undressing are tasks that usually are accomplished by five years of age, so that questions concerning these tasks are seldom asked about healthy, school-aged children. For children with muscle diseases or spina bifida, daily help in dressing both at home and at school may be another important reminder of their limitations and their differences from normal children. Special tasks related to the care of the illness (such as putting on leg braces, taking medications, eating special meals, or catheterizing one's bladder) also may need to be performed on a regular basis. The pediatrician is interested in which tasks are performed, whether they get performed in an appropriate way, and how the child responds to these tasks. For instance, adolescents with a chronic illness often refuse to perform these tasks. Talking to adolescents about this problem and allowing them
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some control over what they do and how they do it might improve compliance. Cognitive Functioning (Including Language Development). Pediatricians often fail to assess directly the child's intellectual functioning when the child's illness does not specifically affect this domain of development. For children less than six years of age, the DDST (Denver Developmental Screening Test) 4 can be used as a method of case-finding. A child who has persistent delays on the DDST should be referred for a formal development evaluation using a test such as the Bayley Scales of Infant Development, 1 the McCarthy Scales of Children's Abilities, 7 or the Yale Developmental Schedules. 11 In older children, questions about the child's academic performance in school are an effective and rapid method of screening. If the child is having difficulties in the classroom or is already repeating a grade, office screening instruments such as the Ciba screening cards 10 or parts of the tests of school functioning developed by Levine 6 can be used. Formal psychological testing including intelligence tests such as the Wechsler Intelligence Scale for Children, Revised, 12• 14 might also be appropriate if the child has demonstrated academic difficulties. Motor Skills. When assessing gross and fine motor skills, the pediatrician is interested in not only what the child can do but also the quality of the child's performance. In younger children, the DDST again can provide age-appropriate norms. In older children, questions about the child's abilities and coordination can provide useful information. In certain chronic illnesses such as asthma or heart disease, children may be limited in their gross motor activities because of severe restrictions by parents, because of their own concerns that they will become sick or have to go to the hospital if they participate, or because of real physical disabilities. Style of Performance. This includes the child's activity level and how the child approaches tasks. Information about hyper- or hypoactivity, distractibility, and impulsiveness can be obtained. Does the child attack a new task in a methodical manner? How long can a child stick with a task? Children with chronic illness may be anxious and upset about their illness, about being accepted by their parents, and/or about being viewed as different by their peers. This anxiety, which makes it impossible for the child to focus on tasks, may manifest itself as hyperactive, distractible, and impulsive behavior. Quiet, withdrawn, and hypoactive behaviors may also be a concern, since children with chronic illness may be frightened of independence and overly dependent upon their parents. Parents and teachers, however, may not complain of these behaviors because the child is quiet and does not create a problem. Emotional and Personality Development. This variable, which overlaps with all of the other variables in the profile, is concerned with the child as a person. It includes how the child responds to stresses, new situations, and friends; what the child does for fun; whether the child participates in group activities; how much time is spent watching television; and so on. In learning about the child's characteristics, particular emphasis should be placed on understanding those moods and feelings that occur commonly in children with chronic illnesses. Is the child sad, frustrated, or angry? Does the child have a low self-image? Has the child achieved
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age-appropriate independence? Is the adolescent involved with excessive risk-taking behaviors? The answers to these and similar questions are likely to provide the best picture of how the child has responded to the disability and integrated the problem into his or her personal life. If psychological testing is performed on the child, projective tests such as the Thematic Apperception Test2 will provide another perspective on this variable. Relationships with Family Members The variables under this heading are concerned with how the child gets along with parents and siblings. Variables focusing on how these family members get along with the child are discussed below in the Family Profile. Although separating a relationship into its two sides is somewhat artificial, this distinction helps the clinician remember that there are two important perspectives in a relationship (for example, the child's and the . parent's). Obtaining information directly from the child or adolescent can provide an important perspective on the relationships, as well as establish an important alliance with the child. Parents. Two major issues should be assessed to understand the child's relationship with his parents. The first is concerned with how the child feels that he is viewed by his parents. Instead of feeling accepted, loved, and supported, the child who is chronically ill may feel that his parents are disappointed in him because of his defect. This sense of disappointing one's parents will likely affect the child's self-confidence with friends and teachers and affect how the child views family events. For instance, a boy with diabetes who feels that he is a tremendous burden and disappointment to his parents may feel excessive guilt and responsibility for his parents' divorce. The second area of concern is whether the child is able to communicate with the parents. To whom does the child turn for help? Can the child bring up concerns related to the illness (for example, fear of the pain associated with the treatment or of death)? Is the parent able to help the child manage such problems? Siblings. In considering the child's relationship with siblings, the physician is interested in both what the child does with the siblings and how the child feels toward them. Jealousy and anger because a brother can run without difficulty or because a sister takes no medications is not an unusual feeling for a child with a chronic illness. In addition, the child may feel guilty that the illness has caused the siblings undue deprivation and suffering. Activities Outside the Home Since a major task of growing up is to develop an appropriate independence from one's family, successful adaptation to school and activities outside the home and acceptance by peers are important for any child and even more so for a child with chronic illness. Yet, leaving the security of one's home environment can be particularly difficult and painful because of problems of separation and stigmatization. Therefore, to understand the child's adjustment to the illness, it is particularly important to learn about the child's activities outside the home. School Performance. Information about the child's performance in school can be divided into four main areas: (1) absenteeism, (2) academic
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performance, (3) behavior in the classroom with peers and teachers, and (4) arrangements made by the school to accommodate the special learning, emotional, or physical needs of the child. The questions focusing on each of these areas should provide considerable data about the child's adaptation to school. For instance, if the child is missing school, is it because the child is sick from the illness or because of a related problem such as "feeling different," or separation anxiety and school phobia? Are the child's reading and math skills at the appropriate grade level? Is the child able to pay attention in the classroom? If not, is it because the child is too drowsy from the anticonvulsant medications? What arrangements have been made to include the child with arthritis in recess activities? Peer Relationships. The child's other major activity outside the home is playing with friends. The physician is interested in whether the child has friends (including a best friend), what they do together, and whether the child participates in organized group activities such as scouting, a swimming program, or baseball. The child with a chronic illness may find it particularly difficult or impossible to participate in certain group activities. How does the child respond to these limitations and what alternatives has the child found? Particular concerns of children with chronic illness include whether to tell their friends about the illness, how to manage special diets and medications outside the home, whether to participate in or how best to manage sleep-overs, and how to respond to being ridiculed by other children. Response to the Illness
Understanding of the Illness. The pediatrician is interested in what the child knows about the illness (including the etiology), what the child's feelings and fears are about the illness, and most importantly whether the child has achieved a working balance between accepting the limitations and striving toward performing normal activities. Information about these topics can be obtained using straightforward questions such as "Can you tell me why you have to come to the doctor so often? what happens when you can't go out to recess? what do you tell your friends?" Since parents are important sources of information for the child, questions about the communication between the parents and child will provide additional insight. The pediatrician can inquire about whether the parents and child talk about the illness, which aspects are discussed (shots, doctor's visits, problems with children at school, heredity and marriage, and so on), and what kinds of questions are asked by the child. Participation in Care. As children get older and move toward selfsufficiency, they want to and should take more responsibility for their own care. The pediatrician is interested in several issues: (1) how responsibilities for care (such as giving shots, following a special diet, or performing daily exercises) are divided between the parents and child; (2) how these divisions of responsibility are decided; and (3) what happens when the child forgets a responsibility or does not follow the diet. The gradual transfer of care from the parents to the school-aged child and adolescent can be a difficult transition for both sides. Parents may be reluctant to give up control and supervision, while the child may be reluctant to accept the responsibilities and the increasing independence. Health providers also
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may have difficulty with this transition; they may become accustomed to talking to the parents about the management of the illness and forget that the child is now old enough to be included in plans for care.
FAMILY PROFILE
The clinical assessment of the child with a chronic illness is incomplete. without obtaining a profile of functioning of the family. Such a profile is important because the family affects how the child functions and because the child's illness can have a major impact on the family. The family's functioning depends upon the resources of the people in the family, particularly the parents, how the family responds to and manages the child's illnesses, and the family's supports. Table 2 lists the five major headings that make up the family profile: (1) the parents' relationship with the child, (2) other parental roles, (3) siblings, (4) the family's response to the illness, and (5) the family's support systems. Parents' Relationship With the Ill Child Two variables that are very much intertwined both in the clinical assessment and in the parents' lives are included under this heading: (1) the parents' views of and behaviors toward the child and (2) the meaning of the child's illness for the parents. The "meaning of the illness" is a shorthand phrase to describe the special significance that the illness has for the parents and family. This significance can be in terms of practical matters, special thoughts and feelings (both conscious and unconscious), and magical thinking and wishes. An adequate clinical assessment of these variables may be difficult to perform because parents of a chronically ill child often do not directly indicate that they are having problems managing their child or that they are having negative feelings such as anger, disappointment, or guilt. When assessing these variables, the clinician should use open-ended questions and pay particular attention to the tone of the parents' conversations and the associations of the parents' ideas. Four topics that have particular importance and meaning to the parents provide a framework for the assessment of these two variables. Birth of the Child. Questions about the pregnancy and birth are intended to understand the parents' initial views, feelings, and expectations of the child. Questions should focus on whether the pregnancy was planned and/or wanted; what the pregnancy and delivery were like; what the parents' first impressions were of the child; whether there was a preference for a boy or girl; and what their expectations were for the child and the child's future. These initial thoughts and feelings and the events around the birth become even more important if the child is born with a birth defect. Mourning the loss of the longed-for and expected normal baby and accepting a defective baby are particularly difficult tasks for parents. 13 History of the Child's Illness. This history should begin with what the parents were first told about the illness, allowing them to describe who
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told them, how they were told, and how they reacted to the news. Did they feel guilty? Did they blame their spouse or themselves for the problem? Did they talk to each other about the child's condition? What were the reactions of their friends and relatives? What was it like when they first took the child (baby) home from the hospital after they were told the diagnosis? After learning about the initial reation, the clinician can obtain a history of the subsequent course of the illness focusing on the parents' reactions to major medical events such as hospitalizations or surgery and to changes in prognosis. General questions about changes in the parents' thoughts and feelings over time are also helpful. "What has it been like caring for your son (or daughter) over the last several years? How has it been different (better or worse) than your initial expectations? What has been your biggest worry or concern? How has the illness affected your own life, your relationship with your spouse, and your family?" Finally, questions about the future (including plans and worries) can be discussed. Parenting the Child. The clinician is interested in how the parents are raising the child. Issues, such as what the child has been told about the illness, how the child is disciplined, and what responsibilities are given to the child are included in this section. For instance, has the child been allowed to develop age-appropriate independence? At one extreme parents may be overinvolved and over-protective; at the other they may be underinvolved and neglectful. This latter situation may develop when parents fail to become involved in their child's care because they fear that the child will die. 5 Questions about normal parenting tasks can help to explore this area. Is your son allowed to visit at a friend's home or stay overnight? How was the first day of school for your daughter? How do you discipline your daughter? What concerns do you have about your son now that he is becoming an adolescent. Description of the Child. The clinician should be aware of how the parents describe the child. Are the content and tone of the conversations mostly positive, expressing the parents' affection, acceptance, and pride or are they mostly negative, expressing resentment, rejection, disappointment, and anger? Are the parents empathic and understanding of the child's disabilities or do they describe the child only in terms of a burden for themselves? Helpful questions include "What do you like least about your child; what do you like most? What kind of personality does your child have? Of whom does your child remind you? How do you think your child feels about himself?" Based on exploring these four topics, the clinician usually can make a reasonably accurate assessment of the parents' relationship with the ill child. In trying to distinguish between a disturbed and a relatively normal relationship, the clinician determines whether the parents' thoughts and feelings are appropriate to the stage of the illness and to the difficulties of the child. For example, parents usually mourn the loss of the normal child at the time of diagnosis and continue to experience a chronic low-grade grief that often is exacerbated by prominent reminders of the illness, changes in medical prognosis, hospitalizations, and so on. s, 9 If, on the other hand, parents have never mourned the loss of the normal child or their chronic grief is an overwhelming sadness that incapacitates them,
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they are likely to have major difficulties in their relationship with their ill child. Other Parental Roles
Parents as Individuals. This variable is concerned with how the illness affects the parents' individual lives in terms of their physical stamina, emotional state, vocational choice, and opportunities for recreation, social activities, volunteer work, and so on. Parents of chronically ill children may be chronically tired from the extra care. They may be depressed or anxious and often feel guilty about the illness and preoccupied with their child's condition. Clinicians should be concerned when these feelings interfere with the parents' ability to function effectively in their tasks. Is the father able to work, or is he so preoccupied with his child's illness that he is unable to function effectively? Has the mother stopped working or is she no longer seeing her friends because of the demands of the illness? It is also helpful for clinicians to have a basic understanding of the parents' backgrounds. Information can be collected about the following topics: (1) their own nurturing, (2) major stresses and losses when growing up, (3) previous experience with chronic illness, (4) responses to past stresses, (5) importance of religion in their lives, and (6) medical and psychiatric problems. The parents' past histories can provide important clues to present problems; for instance, when counseling a father who is refusing to permit corrective surgery for a ventriculoseptal defect, it would be helpful to know that his own brother died of a surgical complication many years ago. Marital Relationship. In addition to an understanding of how the parents get along, the physician is interested in how the marriage works. Information can be obtained by exploring the following areas: (1) how and who makes the decisions in the family; (2) who takes on which responsibilities, and whether there is flexibility in the sharing of these tasks; (3) whether the spouses communicate their affection, differences, and disagreements; and (4) whether the marriage allows for the individual autonomy of the partners. Since the marital relationship often is affected by the child's illness, questions about how the marriage works can be related to the care of the child. For instance, do the parents talk to each other about their concerns for their child and his future? Have they talked to each other about having more children? Do they share in important decisions (whether to include their daughter in a study of the use of insulin pumps, what to tell their son about his illness, how best to prepare their child for surgery, and so on) or does one spouse make all the decisions? Is the father involved in the child's care, or has he withdrawn from the child and from the marriage as well? Parents' Relationships with Siblings. Since care for a child with a chronic illness may take much of the parents' emotional and physical energy, the clinician should not ignore the parents' relationship with the other children in the household. Are the siblings neglected? Is there excessive pressure on them to fulfill the parents' expectations that the ill child cannot meet? Are the parents' anger and resentment toward the ill child deflected onto the healthy siblings? Are the healthy siblings overpro-
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tected because the parents fear that they too might become ill? How have the parents explained the illness to the siblings? These and other issues can be discussed to understand how parents care for the healthy children in the family. Siblings Siblings certainly are affected ;by the child's illness, yet their thoughts and feelings about living with a chronically ill child are seldom addressed. The clinician can address how the siblings are functioning, how they view the sick child and the illness, and how they view themselves in the family. A brief assessment is likely to detect major problems in the adjustment of some; however, since the assessment is usually done through the parents' perspective, it is important to recognize that parents who are preoccupied with an ill child may minimize or not recognize the effects of the illness on the siblings. Response to the Illness
Understanding of the IUness. This includes whether the parents and other members of the family have a realistic understanding of the illnessits etiology and prognosis-and whether the parents are interested in learning new information about the illness. How they seek that new information may provide some insights into their style of adjusting to the illness. For instance, have they joined a volunteer organization to increase their contact with other parents, or do they subscribe to and read medical journals to learn as much as or more than the physician about the illness? Parents who seem excessively angry at and demanding of the medical staff may be projecting their own anger and disappointment with the child. Management. This variable is concerned with how the child's illness is managed. Who provides the daily care, including giving medications, preparing the special meals, deciding when to call the physician about a problem, and so on? If the child is not getting appropriate care for the illness, is it because the parents do not understand what to do, cannot afford to buy the medication, believe that the medication is useless, or some other reason? How does the less-involved spouse (often the husband) participate in the child's care? Special Accommodations. This variable is concerned with the special changes in practical matters of family living that are caused by the child's illness. Such changes might include limited vacations because of strained financial resources, limited geographical mobility because the family must live near a tertiary medical center, or special arrangements in the home to accommodate the ill child. These burdens, which are often not discussed with clinicians, can have important effects on the family. Support Systems Social theorists have emphasized the importance of the family's social network as an important source of strength that helps the family cope with the stresses of the child's illness. These supports may be other family members, friends, neighbors, community or religious agencies, clinicians, and so on. In asking about the family, the physician is interested in
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whether, in fact, its members have adequate emotional and physical supports for their needs. Whom do the parents talk to about their worries and concerns? Who is available to help when a parent feels sad? In terms of physical supports, the family's needs might include financial assistance, transportation to the hospital, or a nurse to give special shots. A particularly important physical support is someone who can care for the ill child while the parents go out by themselves.
OBTAINING PSYCHOSOCIAL DATA The data for these profiles can only be gathered over time as the relationships develop between the clinicians and child and clinicians and parents. The profiles are not static portraits but change depending on the child's age, the illness characteristics, the length of time the family has lived with the illness, other changes in the family's life, and changes in the relationship between the clinician and family. Because these profiles are not static, periodic review of the child's and family's functioning is important for clinical management, yet often this is difficult to accomplish effectively in short visits-the main purpose of which is to check on the child's progress. In addition to frequent short visits, one or more of the clinicians might meet with the parents on a yearly or every-other-year schedule for a more prolonged visit so that psychosocial data can be updated. This visit could serve several purposes. First, the clinician could review the child's progress over the last year and discuss plans for the child's medical care during the following year. Second, the clinician could obtain data about important changes in the child's and family's functioning so that appropriate psychosocial services could be arranged. For instance, parents who originally had planned not to have more children, may, several years later, change their minds and therefore want genetic counseling. Third, the parents could have an opportunity to ask questions and express their worries and concerns in a setting that was focused on how they were adjusting and managing their child. A similar session would be appropriate for older children and adolescents, and in special circumstances, for siblings (for example, when a child is dying). (Mcinerny discusses the practice management aspects of these visits later in this issue.) Periods of crisis for the family are times when parents are often more psychologically available to discuss psychosocial concerns. Clinicians should use these opportunities to explore in a sensitive way those worries and concerns that are related to the crisis so that more effective counseling and management can be provided.
Sources of Data Of the several sources of data available to develop the child's and family' s profiles of functioning, the parents and child are obviously the most important. Although pediatricians are accustomed to collecting most of the information from the child's mother, the father and child should not be ignored. Fathers often come to the initial visit and at times of crisis (hospitalization, surgery, and so on); it is important, however, to include fa-
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thers in the ongoing dialogue about the child's care. One way of including fathers is to invite them to their child's ongoing visits to the physician and to the periodic review sessions for the parents. It also may be important for the parents to have an opportunity to see the clinician without the child present. Except at times of crisis or over the telephone, parents may never speak to the clinicians alone, and thus may be inhibited from discussing major concerns such as future children, marital problems, or even aspects of the child's behavior that worry them. The second major source of data is the child, who often is not talked to about the illness and seldom is talked to alone. The purpose of talking to a school-aged child (even, possibly, a five-year old) is not just to allay the child's anxieties about being at the doctor's office or about having blood drawn; rather, the clinician should engage in a dialogue with the child to learn about the child's experience with the illness and to help the child understand the realities of the illness. This often is best accomplished by interviewing the child alone for a few minutes during regular visits. Issues such as what the child has told his friends can be discussed in a friendly atmosphere. Having the child draw pictures, using the "squiggle game," 15 or asking the child for three wishes can help to facilitate the interview. Additional sources of data are other members of the family, school personnel, mental health professionals, and special psychological and educational testing. Contacting the principal and teachers, particularly when the child is having psychosocial problems, will provide important information about the child's performance at school and with friends. Mental health professionals, either as a member of the team providing care or as a referral service can provide more detailed information about the particular strengths and vulnerabilities of the child and family and advise about managing the ongoing care. Finally, special testing can provide information about the child's intelligence, level of academic performance, and emotional state and personality structure.
Difficulties in Data Collection Developing a psychosocial profile of the child and family can be a time-consuming and difficult task, because data about human behaviors and relationships are complex, and because the topics are sensitive and may remind the participants of the sadness associated with the illness. These discussions are made even more difficult because of constraints provided by both physician and families. There are at least four major difficulties on the physician's side. First, physicians who provide excellent medical care to chronically ill children often are not trained in the psychosocial and developmental aspects of pediatrics. Despite their caring and sensitivity, such physicians often find it difficult to explore developmental or family issues. They often compensate for this limitation by working with a team to provide comprehensive care and relying on other members, such as a nurse practitioner or social worker, to provide a major portion of the psychosocial care. Second, physicians often feel that they do not have adequate time to collect psychosocial data. Some of the data, however, can be collected as part of the regularly scheduled visits. When major psychosocial problems are detected, mental health professionals can help to delineate the extent of the problem and help with management. Third, clini-
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cians who care for chronically ill children often fail to remember (or defend against remembering) how difficult and painful it can be for the family and child to live with the illness, and therefore do not address psychosocial topics. It is much easier to talk to families about the good news or the slight improvement in the child's activity than to focus on the parents' worries and concerns about the child's chronic condition. Addressing these painful topics can be a reminder to clinicians of their own limitations as healers and their own mortality. Finally, clinicians angry feelings toward the parents and/or child may interfere with the psychosocial assessment. Since it is impossible to like all patients to the same degree, clinicians should recognize that their own feelings toward patients influence how care is provided. There are constraints on the family's side as well. (For a more detailed description of how these constraints develop, see the article by Sabbeth in this issue.) Parents tend to minimize their problems for several reasons. First, parents want to be reassured by the physician and told that their child is doing well. If they are reassured enough, maybe the illness will go away. Therefore, parents often do not volunteer their concerns, or, if they do mention them, it is only indirectly (for example, "Will he always have to take the medicine?"). Second, parents like to be successful in caring for the child; bringing their problems to the clinician, therefore, may be viewed as a sign of their own failure as parents. Third, for some parents, the denial of their pain, sorrow, and difficulties is rigidly maintained because they recognize that if they acknowledge their feelings, they may be overwhelmed by them and might be unable to care for the child. Fourth, some parents may not share their angry feelings toward the child, the illness, or the clinicians who cannot cure the child, for fear of being rejected by the physicians. Finally, some parents are not available for psychosocial help, as they are only minimally aware of their own and their child's feelings. The clinicians awareness of these problems should lead to more effective interviews with parents. By combining a sensitivity to one's own feelings and attitudes, a respectful and empathic approach to families, a high level of suspicion for psychosocial problems, and careful questioning and listening for cues from parents and children about their problems and concerns, the clinician will be able to gather the necessary psychosocial data to develop the profiles on the child and family.
USE OF THE CHILD AND FAMILY PROFILES OF FUNCTIONING As clinicians develop profiles of the child's and family's functioning, they should be able to provide answers to the initial questions about the effects of the illness on the child and family. This understanding is likely to change how clinicians provide psychosocial care. First, as clinicians indicate to parents that they are willing to ask difficult and sensitive questions, listen to parents' concerns, and respond to parents' indirect or subtle calls for help, there will be a change in the relationship. Parents are likely to feel more trusting and confident in the
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clinician and may be able to ask directly for help with their specific concerns. At the same time, physicians will be less likely to try to reassure parents in a superficial and sometimes false manner. Second, knowledge of the family's strengths and weaknesses will help clinicians provide more effective advice about the medical management of the illness, and recognize when psychosocial problems are interfering with the medical management. In addition, as clinicians get to know and understand how the family functions, they will be able to advise parents about psychosocial issues, such as how the parents should discuss the illness with the child and siblings, prepare the child and family for transitions in the illness (for example, hospitalizations or changes in prognosis) and transitions in childhood (for example, beginning school or adolescence), and help them manage these transitions. Third, by detecting which children and families are having major problems adjusting to the illness, clinicians can make appropriate referrals for counseling and psychiatric treatment to mental health clinicians. If the psychosocial screening of children and families is effective, some of the referrals can be made in anticipation of a major problem, rather than in the midst of a crisis, when the members of the family are feeling overwhelmed and helpless. A referral to a mental health clinician who is a member of the team providing care is often easier for parents to accept than a referral to a private clinician or child guidance clinic. Regardless of to whom the patient is referred, parents should be helped to understand that a mental health referral is not a disgrace or a sign of craziness. Rather, the referral should be a recognition by the pediatrician, along with the parents, of how difficult it sometimes is to manage living with a chronically ill child, and that families may need assistance so that they can cope emotionally with the many difficult and changing situations. Pediatricians, also, should remind the family that they will continue to provide and coordinate care and that the family is not being abandoned. Finally, an understanding of a child's or family's difficulty in a particular domain of functioning might result in direct action or advocacy in the community. If, for instance, the physician recognizes that the school is not making appropriate arrangements for a handicapped child, contact with the personnel at the school or at the department of special education is likely to result in appropriate changes in the child's educational program. Physicians can also help parents be more effective advocates in the school and community for their child.
CONCLUSION Providing comprehensive medical and psychosocial care is a complicated, time-consuming, sometimes painful, and often rewarding task. This care is of major importance to children and their families so that they can live with and adjust to the chronic illness. A first step in providing such care is an ongoing assessment of the child's and family's psychosocial functioning. Because families tend to minimize their psychosocial problems and clinicians often underestimate how hard it is for children and families to live with a chronic illness, this article has emphasized how clinicians can
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begin to detect both strengths and vulnerabilities within the child and family. As Robert Coles has said, "A clinician must try to see what is strong as well as what is weak, what is sound as well as what ails, what might be struggling for expression in a person's life as well as what is lacking. "3 Understanding how children with chronic physical disease and their families adjust to the illness is a challenge for physicians. If we can successfully meet that challenge, our care and the caring of families will be improved.
REFERENCES 1. Bayley, N.: Bayley Scales oflnfant Development. New York, Psychological Corp., 1969. 2. Bellak, L.: The T.A.T. and C.A.T. in Clinical Use. New York, Grune & Stratton, 1971. 3. Coles, R.: The South Goes North, Volume III of Children of Crisis. Boston, Little, Brown, and Company, 1971, p. ix. 4. Frankenburg, W. K., Goldstein, A. D., and Camp, B. W.: The revised Denver Developmental Screening Test: Its accuracy as a screening test. J. Pediatr., 79:988--995, 1971. 5. Green, M., and Solnit, A. J.: Reactions to the threatened loss of a child: A vulnerable child syndrome. Pediatrics, 34:58--66, 1964. 6. Levine, M. D.: The Anser System. Education Publishing Service, Cambridge, Mass., 1981. 7. McCarthy, D. A.: Manual for the McCarthy Scales of Children's Abilities. New York, Psychological Corp., 1972. 8. Miller, L. G.: Toward a greater understanding of the parents of the mentally retarded. J. Pediatr., 73:699--705, 1968. 9. Olshansky, S.: Chronic sorrow: A response to having a mentally defective child. Social Casework, 43:190-193, 1962. 10. Peters, J. E., Davis, J. S., Goolsby, C. M., eta!.: Physician's Handbook: Screening for MBD. Ciba Medical Horizons, 1973. 11. Provence, S. A.: Yale Developmental Schedules. Unpublished Manuscript. Yale Child Study Center, 1982. 12. Rosenberg, L. A.: Psychological examination of the handicapped child. PEDIATR. CLIN. NORTH AM., 20:61-77, 1973. 13. Solnit, A. J., and Stark, M. H.: Mourning and the birth of a defective child. Psychoanal. Study Child, 16:523--537, 1962. 14. Wechsler, D.: Manual for the Wechsler Intelligence Scale for Children, Revised. New York, Psychological Corp., 1974. 15. Winnicott, D. W.: Therapeutic Consultations in Child Psychiatry. New York, Basic Books, 1971. Department of Pediatrics Yale University School of Medicine 333 Cedar Street New Haven, Connecticut 06510
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Psychosocial Assessment of Children with Chronic Physical Disease ] ohn M. Leventhal, M.D.*
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Living with and adjusting to a chronic physical illness can present major problems for the child and family. Although many children and their families make reasonable adjustments and lead productive lives, they all experience pain and suffering. As noted in the previous articles, the developmental, psychological, and social effects of a chronic illness can be profound. Comprehensive care for these children and families, therefore, should include specialized psychosocial care as well as specialized medical care. Providing this psychosocial care, however, is difficult because families are often very troubled, clinicians often fail to understand how the disease is affecting the child and family, and alleviating the suffering (without being able to change the medical prognosis) is a complicated task. Since management is impossible without appropriate detection of problems, this article will provide an overview of the psychosocial assessment of the child and family. In performing a clinical assessment of a child with a chronic physical illness, there are six major questions that should be addressed. Two questions concern the illness and its physical effects on the child; two concern the developmental and psychosocial effects on the child; and two concern the effects on the family. These questions are: 1. What is the extent of the disease and its complications in the child?
2. stance, fibrosis 3.
What are the physical effects of the illness on the child? For inhas the child with leukemia lost her hair? Is the child with cystic growing poorly and delayed in the onset of puberty?
How has the illness affected the child's performance at home, with peers, and at school? Can the child with asthma run with friends on the
Many of the ideas presented in this article were developed while collaborating with Barbara F. Sabbeth, Ph.D., and Eleanor B. Emmons, A.C.S.W., on a study of relationships between health-care clinicians and families. This study was supported by the W. T. Grant Foundation and the March of Dimes. *Associate Professor, Department of Pediatrics and Child Study Center Yale University School of Medicine; Attending Pediatrician, Yale-New Haven Hospital, New Haven, Connecticut
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playground? Can the child with spina bifida get to the bathroom without assistance? 4. How has the child adjusted to the illness, including an understanding of the disease, a view of self, and relationships with important people in the child's life? For instance, what does the child with spina bifida understand about the disease and her inability to get to the bathroom by herself? How has this inability affected her view of herself and her view of her parents, who need to assist her? 5. What impact does the child's illness have on the family and its members? The impact may come in the form of special meals or equipment, having to perfom postural drainage on the child, increased medical expenses, decreased social activity for the parents, or the decision not to have more children. 6. How has the family adjusted to the special impact or burden of the illness? Has the father taken on a second job and how has that affected his relationship with his child, spouse, and other children? Is the mother depressed because of the constant difficulties in caring for the child or has she been able to get help from family, friends, and community services so that she is not depressed and can function effectively? Physicians are especially trained and skilled at collecting data to answer the first two questions. A detailed history about the course of the illness, a complete physical examination, consultation with subspecialists, and laboratory data reveal the extent of or changes in the disease and the physical effect of the disease on the child. Although the remaining four questions are often harder for physicians to answer, information can be collected in a similar manner. The history can focus on the child's and family's adjustment to the illness as well as the course of the illness; the consulting specialists might include a social worker, child psychiatrist, or other mental health worker to provide a clearer understanding of the family's adjustment; and the laboratory data can include appropriate tests such as intelligence tests, achievement tests from the school, or personality tests.
CHILD AND FAMILY PROFILES OF FUNCTIONING To assess the developmental and psychosocial consequences of the disease on the child and family (and therefore to answer questions 3 to 6 listed above), data can be gathered in a systematic manner. This is best accomplished by developing profiles of the child's and family's functioning (Tables 1 and 2) so that strengths and weaknesses (or vulnerabilities) can be delineated. These profiles can help to organize how psychosocial data are collected. All of the information to these profiles certainly cannot be collected at one visit; rather this information is gathered over years of a relationship between the family and clinician or team of clinicians. In collecting these data, it would be unrealistic to expect the same depth of data or complete profiles on each child and family. A more reasonable approach would be to use these profiles as an outline of important variables that can be assessed in a psychosocial screening; when problems are detected, a more in-depth profile can be obtained. The details of the data and the way the questions are focused depend on many factors, including the child's
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Child's Profile of Functioning
Personal Growth and Development Tasks of daily living Cognitive functioning Motor skills Style of performance Emotional and personality development Relationship with Family Members Parents Siblings Activities Outside the Home School performance Peer relationships Response to the Illness Understanding of the illness Participation in care
age, the specifics of the illness (such as its visibility, types of limitations, modes of treatment, and prognosis), the length of time the child has had the illness, and the relationships between the family, the child, and the clinicians. CHILD PROFILE
Table 1 shows an approach to organizing the child's profile of functioning. There are four major headings: (1) the child's personal growth and development, (2) the child's relationships with family members, (3) the child's activities outside the home, and (4) the child's response to the illness. To obtain a complete profile, the pediatrician or team of health-care providers collects data about the variables under each of the major headings. Personal Growth and Development Variables under this heading are concerned with the child's physical, intellectual, motoric, and emotional growth. The variables have been Table 2.
Family Profile of Functioning
Parents' Relationship with the Ill Child Views of and behaviors toward child Meaning of the illness Other Parental Roles Parents as individuals Marital relationship Parents' relationship with siblings Siblings Response to the Illness Understanding of the Illness Management Special Accommodations Support Systems
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broadly defined, although each can be subdivided into finer details of the child's functioning. Tasks of Daily Living. These include eating, sleeping, toileting, dressing, and special tasks related to the care of the illness. Information can be collected in each of the areas to determine how the child performs these skills. Since limitations in the child's performance make the child more dependent on the parents, and often on other important adults such as teachers, the pediatrician will be interested in the specific limitations as well as how these limitations affect the child's psychological development and relationship with his or her parents. The basic information about eating should include the range of the child's diet and what mealtimes are like in the household. Eating and food become even more important in certain diseases. For instance, in diabetes, more details are required about what is eaten (which might be obtained by the dietician), how meals are managed, what the parents do about the child's cheating or stealing offood, and how much of the parentchild relationship is focused on issues of controlling the child's diet. Information about sleep should include where the child sleeps and whether there are any problems with the child falling asleep or awakening at night. Following hospitalization, children may have difficulties sleeping. The child's illness may also affect the parents' sleep. For instance, parents whose child has a respiratory problem or was a premature infant might be anxious about whether the child will stop breathing. This anxiety might lead to the child's sleeping in the parents' bed, or the parents checking on the child every hour so that neither the parent nor child can sleep well. For most children with a chronic illness, it is enough to know how the parent is toilet training the child, or in older children, whether there are any problems with enuresis or encopresis. In special circumstances-for instance, a child with ulcerative colitis-it would not be unusual for the entire family to know the child's bowel habits. How upsetting is this invasion of privacy for the older child or adolescent? If a child with a chronic physical illness requires assistance getting to the bathroom, the physician should be interested in learning what arrangements have been made for the child at home and at school and how these arrangements are affecting the younger child's mastery of bodily functions or the adolescent's psychosexual development. Dressing and undressing are tasks that usually are accomplished by five years of age, so that questions concerning these tasks are seldom asked about healthy, school-aged children. For children with muscle diseases or spina bifida, daily help in dressing both at home and at school may be another important reminder of their limitations and their differences from normal children. Special tasks related to the care of the illness (such as putting on leg braces, taking medications, eating special meals, or catheterizing one's bladder) also may need to be performed on a regular basis. The pediatrician is interested in which tasks are performed, whether they get performed in an appropriate way, and how the child responds to these tasks. For instance, adolescents with a chronic illness often refuse to perform these tasks. Talking to adolescents about this problem and allowing them
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some control over what they do and how they do it might improve compliance. Cognitive Functioning (Including Language Development). Pediatricians often fail to assess directly the child's intellectual functioning when the child's illness does not specifically affect this domain of development. For children less than six years of age, the DDST (Denver Developmental Screening Test) 4 can be used as a method of case-finding. A child who has persistent delays on the DDST should be referred for a formal development evaluation using a test such as the Bayley Scales of Infant Development, 1 the McCarthy Scales of Children's Abilities, 7 or the Yale Developmental Schedules. 11 In older children, questions about the child's academic performance in school are an effective and rapid method of screening. If the child is having difficulties in the classroom or is already repeating a grade, office screening instruments such as the Ciba screening cards 10 or parts of the tests of school functioning developed by Levine 6 can be used. Formal psychological testing including intelligence tests such as the Wechsler Intelligence Scale for Children, Revised, 12• 14 might also be appropriate if the child has demonstrated academic difficulties. Motor Skills. When assessing gross and fine motor skills, the pediatrician is interested in not only what the child can do but also the quality of the child's performance. In younger children, the DDST again can provide age-appropriate norms. In older children, questions about the child's abilities and coordination can provide useful information. In certain chronic illnesses such as asthma or heart disease, children may be limited in their gross motor activities because of severe restrictions by parents, because of their own concerns that they will become sick or have to go to the hospital if they participate, or because of real physical disabilities. Style of Performance. This includes the child's activity level and how the child approaches tasks. Information about hyper- or hypoactivity, distractibility, and impulsiveness can be obtained. Does the child attack a new task in a methodical manner? How long can a child stick with a task? Children with chronic illness may be anxious and upset about their illness, about being accepted by their parents, and/or about being viewed as different by their peers. This anxiety, which makes it impossible for the child to focus on tasks, may manifest itself as hyperactive, distractible, and impulsive behavior. Quiet, withdrawn, and hypoactive behaviors may also be a concern, since children with chronic illness may be frightened of independence and overly dependent upon their parents. Parents and teachers, however, may not complain of these behaviors because the child is quiet and does not create a problem. Emotional and Personality Development. This variable, which overlaps with all of the other variables in the profile, is concerned with the child as a person. It includes how the child responds to stresses, new situations, and friends; what the child does for fun; whether the child participates in group activities; how much time is spent watching television; and so on. In learning about the child's characteristics, particular emphasis should be placed on understanding those moods and feelings that occur commonly in children with chronic illnesses. Is the child sad, frustrated, or angry? Does the child have a low self-image? Has the child achieved
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age-appropriate independence? Is the adolescent involved with excessive risk-taking behaviors? The answers to these and similar questions are likely to provide the best picture of how the child has responded to the disability and integrated the problem into his or her personal life. If psychological testing is performed on the child, projective tests such as the Thematic Apperception Test2 will provide another perspective on this variable. Relationships with Family Members The variables under this heading are concerned with how the child gets along with parents and siblings. Variables focusing on how these family members get along with the child are discussed below in the Family Profile. Although separating a relationship into its two sides is somewhat artificial, this distinction helps the clinician remember that there are two important perspectives in a relationship (for example, the child's and the . parent's). Obtaining information directly from the child or adolescent can provide an important perspective on the relationships, as well as establish an important alliance with the child. Parents. Two major issues should be assessed to understand the child's relationship with his parents. The first is concerned with how the child feels that he is viewed by his parents. Instead of feeling accepted, loved, and supported, the child who is chronically ill may feel that his parents are disappointed in him because of his defect. This sense of disappointing one's parents will likely affect the child's self-confidence with friends and teachers and affect how the child views family events. For instance, a boy with diabetes who feels that he is a tremendous burden and disappointment to his parents may feel excessive guilt and responsibility for his parents' divorce. The second area of concern is whether the child is able to communicate with the parents. To whom does the child turn for help? Can the child bring up concerns related to the illness (for example, fear of the pain associated with the treatment or of death)? Is the parent able to help the child manage such problems? Siblings. In considering the child's relationship with siblings, the physician is interested in both what the child does with the siblings and how the child feels toward them. Jealousy and anger because a brother can run without difficulty or because a sister takes no medications is not an unusual feeling for a child with a chronic illness. In addition, the child may feel guilty that the illness has caused the siblings undue deprivation and suffering. Activities Outside the Home Since a major task of growing up is to develop an appropriate independence from one's family, successful adaptation to school and activities outside the home and acceptance by peers are important for any child and even more so for a child with chronic illness. Yet, leaving the security of one's home environment can be particularly difficult and painful because of problems of separation and stigmatization. Therefore, to understand the child's adjustment to the illness, it is particularly important to learn about the child's activities outside the home. School Performance. Information about the child's performance in school can be divided into four main areas: (1) absenteeism, (2) academic
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performance, (3) behavior in the classroom with peers and teachers, and (4) arrangements made by the school to accommodate the special learning, emotional, or physical needs of the child. The questions focusing on each of these areas should provide considerable data about the child's adaptation to school. For instance, if the child is missing school, is it because the child is sick from the illness or because of a related problem such as "feeling different," or separation anxiety and school phobia? Are the child's reading and math skills at the appropriate grade level? Is the child able to pay attention in the classroom? If not, is it because the child is too drowsy from the anticonvulsant medications? What arrangements have been made to include the child with arthritis in recess activities? Peer Relationships. The child's other major activity outside the home is playing with friends. The physician is interested in whether the child has friends (including a best friend), what they do together, and whether the child participates in organized group activities such as scouting, a swimming program, or baseball. The child with a chronic illness may find it particularly difficult or impossible to participate in certain group activities. How does the child respond to these limitations and what alternatives has the child found? Particular concerns of children with chronic illness include whether to tell their friends about the illness, how to manage special diets and medications outside the home, whether to participate in or how best to manage sleep-overs, and how to respond to being ridiculed by other children. Response to the Illness
Understanding of the Illness. The pediatrician is interested in what the child knows about the illness (including the etiology), what the child's feelings and fears are about the illness, and most importantly whether the child has achieved a working balance between accepting the limitations and striving toward performing normal activities. Information about these topics can be obtained using straightforward questions such as "Can you tell me why you have to come to the doctor so often? what happens when you can't go out to recess? what do you tell your friends?" Since parents are important sources of information for the child, questions about the communication between the parents and child will provide additional insight. The pediatrician can inquire about whether the parents and child talk about the illness, which aspects are discussed (shots, doctor's visits, problems with children at school, heredity and marriage, and so on), and what kinds of questions are asked by the child. Participation in Care. As children get older and move toward selfsufficiency, they want to and should take more responsibility for their own care. The pediatrician is interested in several issues: (1) how responsibilities for care (such as giving shots, following a special diet, or performing daily exercises) are divided between the parents and child; (2) how these divisions of responsibility are decided; and (3) what happens when the child forgets a responsibility or does not follow the diet. The gradual transfer of care from the parents to the school-aged child and adolescent can be a difficult transition for both sides. Parents may be reluctant to give up control and supervision, while the child may be reluctant to accept the responsibilities and the increasing independence. Health providers also
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may have difficulty with this transition; they may become accustomed to talking to the parents about the management of the illness and forget that the child is now old enough to be included in plans for care.
FAMILY PROFILE
The clinical assessment of the child with a chronic illness is incomplete. without obtaining a profile of functioning of the family. Such a profile is important because the family affects how the child functions and because the child's illness can have a major impact on the family. The family's functioning depends upon the resources of the people in the family, particularly the parents, how the family responds to and manages the child's illnesses, and the family's supports. Table 2 lists the five major headings that make up the family profile: (1) the parents' relationship with the child, (2) other parental roles, (3) siblings, (4) the family's response to the illness, and (5) the family's support systems. Parents' Relationship With the Ill Child Two variables that are very much intertwined both in the clinical assessment and in the parents' lives are included under this heading: (1) the parents' views of and behaviors toward the child and (2) the meaning of the child's illness for the parents. The "meaning of the illness" is a shorthand phrase to describe the special significance that the illness has for the parents and family. This significance can be in terms of practical matters, special thoughts and feelings (both conscious and unconscious), and magical thinking and wishes. An adequate clinical assessment of these variables may be difficult to perform because parents of a chronically ill child often do not directly indicate that they are having problems managing their child or that they are having negative feelings such as anger, disappointment, or guilt. When assessing these variables, the clinician should use open-ended questions and pay particular attention to the tone of the parents' conversations and the associations of the parents' ideas. Four topics that have particular importance and meaning to the parents provide a framework for the assessment of these two variables. Birth of the Child. Questions about the pregnancy and birth are intended to understand the parents' initial views, feelings, and expectations of the child. Questions should focus on whether the pregnancy was planned and/or wanted; what the pregnancy and delivery were like; what the parents' first impressions were of the child; whether there was a preference for a boy or girl; and what their expectations were for the child and the child's future. These initial thoughts and feelings and the events around the birth become even more important if the child is born with a birth defect. Mourning the loss of the longed-for and expected normal baby and accepting a defective baby are particularly difficult tasks for parents. 13 History of the Child's Illness. This history should begin with what the parents were first told about the illness, allowing them to describe who
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told them, how they were told, and how they reacted to the news. Did they feel guilty? Did they blame their spouse or themselves for the problem? Did they talk to each other about the child's condition? What were the reactions of their friends and relatives? What was it like when they first took the child (baby) home from the hospital after they were told the diagnosis? After learning about the initial reation, the clinician can obtain a history of the subsequent course of the illness focusing on the parents' reactions to major medical events such as hospitalizations or surgery and to changes in prognosis. General questions about changes in the parents' thoughts and feelings over time are also helpful. "What has it been like caring for your son (or daughter) over the last several years? How has it been different (better or worse) than your initial expectations? What has been your biggest worry or concern? How has the illness affected your own life, your relationship with your spouse, and your family?" Finally, questions about the future (including plans and worries) can be discussed. Parenting the Child. The clinician is interested in how the parents are raising the child. Issues, such as what the child has been told about the illness, how the child is disciplined, and what responsibilities are given to the child are included in this section. For instance, has the child been allowed to develop age-appropriate independence? At one extreme parents may be overinvolved and over-protective; at the other they may be underinvolved and neglectful. This latter situation may develop when parents fail to become involved in their child's care because they fear that the child will die. 5 Questions about normal parenting tasks can help to explore this area. Is your son allowed to visit at a friend's home or stay overnight? How was the first day of school for your daughter? How do you discipline your daughter? What concerns do you have about your son now that he is becoming an adolescent. Description of the Child. The clinician should be aware of how the parents describe the child. Are the content and tone of the conversations mostly positive, expressing the parents' affection, acceptance, and pride or are they mostly negative, expressing resentment, rejection, disappointment, and anger? Are the parents empathic and understanding of the child's disabilities or do they describe the child only in terms of a burden for themselves? Helpful questions include "What do you like least about your child; what do you like most? What kind of personality does your child have? Of whom does your child remind you? How do you think your child feels about himself?" Based on exploring these four topics, the clinician usually can make a reasonably accurate assessment of the parents' relationship with the ill child. In trying to distinguish between a disturbed and a relatively normal relationship, the clinician determines whether the parents' thoughts and feelings are appropriate to the stage of the illness and to the difficulties of the child. For example, parents usually mourn the loss of the normal child at the time of diagnosis and continue to experience a chronic low-grade grief that often is exacerbated by prominent reminders of the illness, changes in medical prognosis, hospitalizations, and so on. s, 9 If, on the other hand, parents have never mourned the loss of the normal child or their chronic grief is an overwhelming sadness that incapacitates them,
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they are likely to have major difficulties in their relationship with their ill child. Other Parental Roles
Parents as Individuals. This variable is concerned with how the illness affects the parents' individual lives in terms of their physical stamina, emotional state, vocational choice, and opportunities for recreation, social activities, volunteer work, and so on. Parents of chronically ill children may be chronically tired from the extra care. They may be depressed or anxious and often feel guilty about the illness and preoccupied with their child's condition. Clinicians should be concerned when these feelings interfere with the parents' ability to function effectively in their tasks. Is the father able to work, or is he so preoccupied with his child's illness that he is unable to function effectively? Has the mother stopped working or is she no longer seeing her friends because of the demands of the illness? It is also helpful for clinicians to have a basic understanding of the parents' backgrounds. Information can be collected about the following topics: (1) their own nurturing, (2) major stresses and losses when growing up, (3) previous experience with chronic illness, (4) responses to past stresses, (5) importance of religion in their lives, and (6) medical and psychiatric problems. The parents' past histories can provide important clues to present problems; for instance, when counseling a father who is refusing to permit corrective surgery for a ventriculoseptal defect, it would be helpful to know that his own brother died of a surgical complication many years ago. Marital Relationship. In addition to an understanding of how the parents get along, the physician is interested in how the marriage works. Information can be obtained by exploring the following areas: (1) how and who makes the decisions in the family; (2) who takes on which responsibilities, and whether there is flexibility in the sharing of these tasks; (3) whether the spouses communicate their affection, differences, and disagreements; and (4) whether the marriage allows for the individual autonomy of the partners. Since the marital relationship often is affected by the child's illness, questions about how the marriage works can be related to the care of the child. For instance, do the parents talk to each other about their concerns for their child and his future? Have they talked to each other about having more children? Do they share in important decisions (whether to include their daughter in a study of the use of insulin pumps, what to tell their son about his illness, how best to prepare their child for surgery, and so on) or does one spouse make all the decisions? Is the father involved in the child's care, or has he withdrawn from the child and from the marriage as well? Parents' Relationships with Siblings. Since care for a child with a chronic illness may take much of the parents' emotional and physical energy, the clinician should not ignore the parents' relationship with the other children in the household. Are the siblings neglected? Is there excessive pressure on them to fulfill the parents' expectations that the ill child cannot meet? Are the parents' anger and resentment toward the ill child deflected onto the healthy siblings? Are the healthy siblings overpro-
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tected because the parents fear that they too might become ill? How have the parents explained the illness to the siblings? These and other issues can be discussed to understand how parents care for the healthy children in the family. Siblings Siblings certainly are affected ;by the child's illness, yet their thoughts and feelings about living with a chronically ill child are seldom addressed. The clinician can address how the siblings are functioning, how they view the sick child and the illness, and how they view themselves in the family. A brief assessment is likely to detect major problems in the adjustment of some; however, since the assessment is usually done through the parents' perspective, it is important to recognize that parents who are preoccupied with an ill child may minimize or not recognize the effects of the illness on the siblings. Response to the Illness
Understanding of the IUness. This includes whether the parents and other members of the family have a realistic understanding of the illnessits etiology and prognosis-and whether the parents are interested in learning new information about the illness. How they seek that new information may provide some insights into their style of adjusting to the illness. For instance, have they joined a volunteer organization to increase their contact with other parents, or do they subscribe to and read medical journals to learn as much as or more than the physician about the illness? Parents who seem excessively angry at and demanding of the medical staff may be projecting their own anger and disappointment with the child. Management. This variable is concerned with how the child's illness is managed. Who provides the daily care, including giving medications, preparing the special meals, deciding when to call the physician about a problem, and so on? If the child is not getting appropriate care for the illness, is it because the parents do not understand what to do, cannot afford to buy the medication, believe that the medication is useless, or some other reason? How does the less-involved spouse (often the husband) participate in the child's care? Special Accommodations. This variable is concerned with the special changes in practical matters of family living that are caused by the child's illness. Such changes might include limited vacations because of strained financial resources, limited geographical mobility because the family must live near a tertiary medical center, or special arrangements in the home to accommodate the ill child. These burdens, which are often not discussed with clinicians, can have important effects on the family. Support Systems Social theorists have emphasized the importance of the family's social network as an important source of strength that helps the family cope with the stresses of the child's illness. These supports may be other family members, friends, neighbors, community or religious agencies, clinicians, and so on. In asking about the family, the physician is interested in
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whether, in fact, its members have adequate emotional and physical supports for their needs. Whom do the parents talk to about their worries and concerns? Who is available to help when a parent feels sad? In terms of physical supports, the family's needs might include financial assistance, transportation to the hospital, or a nurse to give special shots. A particularly important physical support is someone who can care for the ill child while the parents go out by themselves.
OBTAINING PSYCHOSOCIAL DATA The data for these profiles can only be gathered over time as the relationships develop between the clinicians and child and clinicians and parents. The profiles are not static portraits but change depending on the child's age, the illness characteristics, the length of time the family has lived with the illness, other changes in the family's life, and changes in the relationship between the clinician and family. Because these profiles are not static, periodic review of the child's and family's functioning is important for clinical management, yet often this is difficult to accomplish effectively in short visits-the main purpose of which is to check on the child's progress. In addition to frequent short visits, one or more of the clinicians might meet with the parents on a yearly or every-other-year schedule for a more prolonged visit so that psychosocial data can be updated. This visit could serve several purposes. First, the clinician could review the child's progress over the last year and discuss plans for the child's medical care during the following year. Second, the clinician could obtain data about important changes in the child's and family's functioning so that appropriate psychosocial services could be arranged. For instance, parents who originally had planned not to have more children, may, several years later, change their minds and therefore want genetic counseling. Third, the parents could have an opportunity to ask questions and express their worries and concerns in a setting that was focused on how they were adjusting and managing their child. A similar session would be appropriate for older children and adolescents, and in special circumstances, for siblings (for example, when a child is dying). (Mcinerny discusses the practice management aspects of these visits later in this issue.) Periods of crisis for the family are times when parents are often more psychologically available to discuss psychosocial concerns. Clinicians should use these opportunities to explore in a sensitive way those worries and concerns that are related to the crisis so that more effective counseling and management can be provided.
Sources of Data Of the several sources of data available to develop the child's and family' s profiles of functioning, the parents and child are obviously the most important. Although pediatricians are accustomed to collecting most of the information from the child's mother, the father and child should not be ignored. Fathers often come to the initial visit and at times of crisis (hospitalization, surgery, and so on); it is important, however, to include fa-
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thers in the ongoing dialogue about the child's care. One way of including fathers is to invite them to their child's ongoing visits to the physician and to the periodic review sessions for the parents. It also may be important for the parents to have an opportunity to see the clinician without the child present. Except at times of crisis or over the telephone, parents may never speak to the clinicians alone, and thus may be inhibited from discussing major concerns such as future children, marital problems, or even aspects of the child's behavior that worry them. The second major source of data is the child, who often is not talked to about the illness and seldom is talked to alone. The purpose of talking to a school-aged child (even, possibly, a five-year old) is not just to allay the child's anxieties about being at the doctor's office or about having blood drawn; rather, the clinician should engage in a dialogue with the child to learn about the child's experience with the illness and to help the child understand the realities of the illness. This often is best accomplished by interviewing the child alone for a few minutes during regular visits. Issues such as what the child has told his friends can be discussed in a friendly atmosphere. Having the child draw pictures, using the "squiggle game," 15 or asking the child for three wishes can help to facilitate the interview. Additional sources of data are other members of the family, school personnel, mental health professionals, and special psychological and educational testing. Contacting the principal and teachers, particularly when the child is having psychosocial problems, will provide important information about the child's performance at school and with friends. Mental health professionals, either as a member of the team providing care or as a referral service can provide more detailed information about the particular strengths and vulnerabilities of the child and family and advise about managing the ongoing care. Finally, special testing can provide information about the child's intelligence, level of academic performance, and emotional state and personality structure.
Difficulties in Data Collection Developing a psychosocial profile of the child and family can be a time-consuming and difficult task, because data about human behaviors and relationships are complex, and because the topics are sensitive and may remind the participants of the sadness associated with the illness. These discussions are made even more difficult because of constraints provided by both physician and families. There are at least four major difficulties on the physician's side. First, physicians who provide excellent medical care to chronically ill children often are not trained in the psychosocial and developmental aspects of pediatrics. Despite their caring and sensitivity, such physicians often find it difficult to explore developmental or family issues. They often compensate for this limitation by working with a team to provide comprehensive care and relying on other members, such as a nurse practitioner or social worker, to provide a major portion of the psychosocial care. Second, physicians often feel that they do not have adequate time to collect psychosocial data. Some of the data, however, can be collected as part of the regularly scheduled visits. When major psychosocial problems are detected, mental health professionals can help to delineate the extent of the problem and help with management. Third, clini-
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cians who care for chronically ill children often fail to remember (or defend against remembering) how difficult and painful it can be for the family and child to live with the illness, and therefore do not address psychosocial topics. It is much easier to talk to families about the good news or the slight improvement in the child's activity than to focus on the parents' worries and concerns about the child's chronic condition. Addressing these painful topics can be a reminder to clinicians of their own limitations as healers and their own mortality. Finally, clinicians angry feelings toward the parents and/or child may interfere with the psychosocial assessment. Since it is impossible to like all patients to the same degree, clinicians should recognize that their own feelings toward patients influence how care is provided. There are constraints on the family's side as well. (For a more detailed description of how these constraints develop, see the article by Sabbeth in this issue.) Parents tend to minimize their problems for several reasons. First, parents want to be reassured by the physician and told that their child is doing well. If they are reassured enough, maybe the illness will go away. Therefore, parents often do not volunteer their concerns, or, if they do mention them, it is only indirectly (for example, "Will he always have to take the medicine?"). Second, parents like to be successful in caring for the child; bringing their problems to the clinician, therefore, may be viewed as a sign of their own failure as parents. Third, for some parents, the denial of their pain, sorrow, and difficulties is rigidly maintained because they recognize that if they acknowledge their feelings, they may be overwhelmed by them and might be unable to care for the child. Fourth, some parents may not share their angry feelings toward the child, the illness, or the clinicians who cannot cure the child, for fear of being rejected by the physicians. Finally, some parents are not available for psychosocial help, as they are only minimally aware of their own and their child's feelings. The clinicians awareness of these problems should lead to more effective interviews with parents. By combining a sensitivity to one's own feelings and attitudes, a respectful and empathic approach to families, a high level of suspicion for psychosocial problems, and careful questioning and listening for cues from parents and children about their problems and concerns, the clinician will be able to gather the necessary psychosocial data to develop the profiles on the child and family.
USE OF THE CHILD AND FAMILY PROFILES OF FUNCTIONING As clinicians develop profiles of the child's and family's functioning, they should be able to provide answers to the initial questions about the effects of the illness on the child and family. This understanding is likely to change how clinicians provide psychosocial care. First, as clinicians indicate to parents that they are willing to ask difficult and sensitive questions, listen to parents' concerns, and respond to parents' indirect or subtle calls for help, there will be a change in the relationship. Parents are likely to feel more trusting and confident in the
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clinician and may be able to ask directly for help with their specific concerns. At the same time, physicians will be less likely to try to reassure parents in a superficial and sometimes false manner. Second, knowledge of the family's strengths and weaknesses will help clinicians provide more effective advice about the medical management of the illness, and recognize when psychosocial problems are interfering with the medical management. In addition, as clinicians get to know and understand how the family functions, they will be able to advise parents about psychosocial issues, such as how the parents should discuss the illness with the child and siblings, prepare the child and family for transitions in the illness (for example, hospitalizations or changes in prognosis) and transitions in childhood (for example, beginning school or adolescence), and help them manage these transitions. Third, by detecting which children and families are having major problems adjusting to the illness, clinicians can make appropriate referrals for counseling and psychiatric treatment to mental health clinicians. If the psychosocial screening of children and families is effective, some of the referrals can be made in anticipation of a major problem, rather than in the midst of a crisis, when the members of the family are feeling overwhelmed and helpless. A referral to a mental health clinician who is a member of the team providing care is often easier for parents to accept than a referral to a private clinician or child guidance clinic. Regardless of to whom the patient is referred, parents should be helped to understand that a mental health referral is not a disgrace or a sign of craziness. Rather, the referral should be a recognition by the pediatrician, along with the parents, of how difficult it sometimes is to manage living with a chronically ill child, and that families may need assistance so that they can cope emotionally with the many difficult and changing situations. Pediatricians, also, should remind the family that they will continue to provide and coordinate care and that the family is not being abandoned. Finally, an understanding of a child's or family's difficulty in a particular domain of functioning might result in direct action or advocacy in the community. If, for instance, the physician recognizes that the school is not making appropriate arrangements for a handicapped child, contact with the personnel at the school or at the department of special education is likely to result in appropriate changes in the child's educational program. Physicians can also help parents be more effective advocates in the school and community for their child.
CONCLUSION Providing comprehensive medical and psychosocial care is a complicated, time-consuming, sometimes painful, and often rewarding task. This care is of major importance to children and their families so that they can live with and adjust to the chronic illness. A first step in providing such care is an ongoing assessment of the child's and family's psychosocial functioning. Because families tend to minimize their psychosocial problems and clinicians often underestimate how hard it is for children and families to live with a chronic illness, this article has emphasized how clinicians can
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begin to detect both strengths and vulnerabilities within the child and family. As Robert Coles has said, "A clinician must try to see what is strong as well as what is weak, what is sound as well as what ails, what might be struggling for expression in a person's life as well as what is lacking. "3 Understanding how children with chronic physical disease and their families adjust to the illness is a challenge for physicians. If we can successfully meet that challenge, our care and the caring of families will be improved.
REFERENCES 1. Bayley, N.: Bayley Scales oflnfant Development. New York, Psychological Corp., 1969. 2. Bellak, L.: The T.A.T. and C.A.T. in Clinical Use. New York, Grune & Stratton, 1971. 3. Coles, R.: The South Goes North, Volume III of Children of Crisis. Boston, Little, Brown, and Company, 1971, p. ix. 4. Frankenburg, W. K., Goldstein, A. D., and Camp, B. W.: The revised Denver Developmental Screening Test: Its accuracy as a screening test. J. Pediatr., 79:988--995, 1971. 5. Green, M., and Solnit, A. J.: Reactions to the threatened loss of a child: A vulnerable child syndrome. Pediatrics, 34:58--66, 1964. 6. Levine, M. D.: The Anser System. Education Publishing Service, Cambridge, Mass., 1981. 7. McCarthy, D. A.: Manual for the McCarthy Scales of Children's Abilities. New York, Psychological Corp., 1972. 8. Miller, L. G.: Toward a greater understanding of the parents of the mentally retarded. J. Pediatr., 73:699--705, 1968. 9. Olshansky, S.: Chronic sorrow: A response to having a mentally defective child. Social Casework, 43:190-193, 1962. 10. Peters, J. E., Davis, J. S., Goolsby, C. M., eta!.: Physician's Handbook: Screening for MBD. Ciba Medical Horizons, 1973. 11. Provence, S. A.: Yale Developmental Schedules. Unpublished Manuscript. Yale Child Study Center, 1982. 12. Rosenberg, L. A.: Psychological examination of the handicapped child. PEDIATR. CLIN. NORTH AM., 20:61-77, 1973. 13. Solnit, A. J., and Stark, M. H.: Mourning and the birth of a defective child. Psychoanal. Study Child, 16:523--537, 1962. 14. Wechsler, D.: Manual for the Wechsler Intelligence Scale for Children, Revised. New York, Psychological Corp., 1974. 15. Winnicott, D. W.: Therapeutic Consultations in Child Psychiatry. New York, Basic Books, 1971. Department of Pediatrics Yale University School of Medicine 333 Cedar Street New Haven, Connecticut 06510
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