Principle 1. Mental Health Clinicians Should Understand How to Collaborate Effectively with Medical Professionals to Facilitate the Health Care of Physically Ill Children.
The mental health clinician working with physically ill children should work toward establishing effective collaborations with primary care physicians and other medical professionals (pediatric health care team). The clinician must demonstrate flexibility and adaptability to perform several roles: evaluation, advocacy, support, and education.
During the assessment, the clinician's primary role is to identify comorbid psychiatric illness. The assessment should identify direct effects of health conditions that mimic emotional symptoms as well as recognize physical symptoms that are associated with emotional distress. The assessment should identify maladaptive coping styles and behaviors that interfere with a child's health care as well as strengths that promote resiliency. The clinician can advocate with the pediatric health care team on behalf of a child and his or her family through the recognition of the patient's developmental and emotional needs. Finally, the clinician can provide support and education to the pediatric health care team on issues including psychiatric comorbidity, advice on working with families, and countertransference reactions to patients and caregivers.
It is important for the clinician to communicate his or her findings to medical professionals. In doing so, the clinician should follow the maxim "be available, be understandable, be practical," while taking care to avoid psychological jargon. The clinician should inform the family that his or her findings will be communicated to appropriate members of the pediatric health care team. The family can be told that the clinician and appropriate professional caregivers are required to protect confidentiality under the Health Insurance Portability and Accountability Act. The consultant may also inform the family of situations in which confidentiality cannot be maintained beyond the pediatric setting (e.g., allegations of physical or sexual abuse).
As part of the communication process, a written report should document a summary of the clinician's opinion as well as information necessary for billing and medical/legal purposes. The report should be clear and concise while avoiding personal details that are inappropriate or not required by the medical team, because the medical records may be available to the patient and family for review as well as to outside agencies (e.g., insurance company, social service, court).
Although all children should have a primary care physician, this is not always the case. In these situations, the clinician should work with the family to identify an appropriate physician to assume the child's care. If the child and/or parents are reluctant to seek medical care, the clinician's support and recommendations may be instrumental in accomplishing that important goal. When the child's care involves multiple specialists, the clinician should help the family designate a single physician to coordinate the patient's overall care.
Principle 2. The Reason for and Purpose of the Mental Health Referral Should Be Understood.
By collaborating with the pediatric health care team and the family to clarify the reasons for and purposes of the referral, the mental health clinician is better positioned to frame an effective intervention. Mental health referrals may be generated from primary care physicians, pediatric specialists, nurses, social workers, child-life specialists, other health care providers, or parents. Before assessing the physically ill child, the clinician should seek answers to the following questions: (1) Who is requesting the referral? (2) What is the reason for the referral? (3) When was the request made? (4) What is the time frame within which to respond? (5) Why is the request being made at this time? (6) Have the reasons for and value of the consultation been discussed with the child and family?
In the traditional outpatient mental health setting, the family may not understand the reason for the referral and/or may provide an explanation that differs from that of the referring physician. Similarly, in inpatient or outpatient pediatric settings, the family may also be unaware that a mental health referral or consultation has been made. As with any other medical consultation, the treating physician(s) should directly inform the child and family about the referral before the assessment. Explanations should include the concerns that prompted the request and the intent of providing comprehensive care to the family. In these situations, the treating physician is the consultee, in contrast to the more typical psychiatric assessment in which the parents are the consulting agents. It is important to consider the family’s priorities, clarify the reason for referral, correct any misperceptions, and negotiate appropriate goals. It is important to remember that, although a referral may officially come from the child’s treating physician, the primary source of the referral may actually be the family, the school, or any of the medical professionals mentioned above.
Formal consent for hospital consultation (whether psychiatric or other medical specialty) is considered part of the authorization for treatment signed by parents at admission to the hospital. If the parent refuses the consultation, the clinician and treating physician(s) should together attempt to define and address the reason(s) for refusal and consider the urgency of the consultation. Even in cases where a family refuses the consultation, the clinician can provide valuable advice and support to the pediatric health care team facing a difficult clinical situation.
Principle 3. The Assessment Should Integrate the Impact of a Child's Physical Illness into a Developmentally Informed Biopsychosocial Formulation.
The assessment should provide the information necessary for the clinician to generate a developmentally informed biopsychosocial formulation capable of informing management. The components of the American Academy of Child and Adolescent Psychiatry's (AACAP) Practice Parameters for the Psychiatric Assessment of Children and Adolescents are applicable to physically ill children.
Obtaining Information from Multiple Sources
Information should be obtained from treating physicians and other medical professionals. When a child is hospitalized, the medical record should be reviewed and supplemented by information from available pediatric clinicians (e.g., physicians, specialists, nurses, social workers, child-life specialists). Records of outside mental health and special education evaluations should be reviewed when available. When children are involved with child welfare agencies or the juvenile justice system and/or are in institutional care, it may be important to obtain records and current information from those sources.
There are occasions in pediatric settings when the treating physician and family may need an urgent psychiatric intervention (e.g., acute panic, disordered mental status, aggressive behavior). The priority then becomes a focused assessment with corroborating outside information that still must inform diagnosis and initiate a pragmatic management plan that targets the referral concern.
Separate Interviews for Child and Parent(s)
Optimally, patients should be interviewed both alone and with their family. Children are able to listen and ponder information, even while they are very ill. When approached with sensitivity and respect, children can address their illness or even the possibility of death. Although parents may have difficulty leaving their ill child alone or in someone else's care, it is important to find acceptable substitutes to attend to the child, so parents have an opportunity to speak with the clinician without the child present.
Assessment of Functioning
Table 2 in the original guideline document outlines an assessment protocol for assessing the interrelated domains of illness factors, illness understanding, family functioning, social relationships, academic functioning, coping mechanisms, religion, and relationships with the medical team. Beginning with open-ended questions in these domains can elicit information that builds alliances and richly informs assessment and treatment. To understand better the relative impact of a physical illness, it is helpful to assess how the child’s level of physical functioning compares to that of others with the same illness and/or degree of impairment (e.g., whereas one paraplegic adolescent becomes a wheelchair athlete, another refuses to leave home).
Physical illnesses and their treatments may impose burdens that significantly affect a child's health-related quality of life. Quality of life is considered to include four domains: disease state and physical symptoms, functional status, psychological functioning, and social functioning. Although there may be a tendency to dichotomize the assessment into "medical" versus "psychiatric or functional," a child's presentation encompasses an interactive relation between developmental, medical, emotional, social, and cultural influences, thereby supporting the value of a biopsychosocial approach.
Principle 4. General Medical Conditions and/or Their Treatments Should Be Considered in the Etiology of a Child's Psychological and Behavioral Symptoms.
Mental health clinicians should be aware that emotional and behavioral symptoms (e.g., anxiety, depression, aggression) may be direct manifestations of a physical illness and/or its treatment. It is not uncommon for psychiatric symptoms to be attributed to the "stress" associated with a chronic physical illness, particularly when there are other notable psychosocial issues. Generally, each child has both indirect and direct physical illness effects, with the clinician facing the challenge of determining the relative importance of each to the child's current symptomatology.
Clinicians should be knowledgeable about a child's physical illness, including a basic understanding of its pathophysiology, presentation, course, treatment, and prognosis. The clinician should review medical histories, physical examinations, laboratory tests, and diagnostic procedures to confirm that any abnormal results have been addressed. Table 3 in the original guideline document lists common laboratory tests and procedures to consider in assessing the presence of a general medical condition.
A comprehensive history of the child's physical condition and its treatment interventions (e.g., medications) is critical to understanding and differentiating indirect (reactive) from direct effects of a physical illness on a patient's presentation. Common manifestations of psychological distress related to the indirect effects of physical illnesses include somatic symptoms (e.g., malaise, pain, irritability, sleep disturbances, appetite changes), increased attachment behavior (e.g., clinginess), regression (e.g., loss of a developmental milestone), passivity (e.g., helplessness, powerlessness), frightening fantasies about illness or procedures (e.g., ideas of punishment, fear of bodily harm), anxiety, depression, mobilization of defenses (e.g., denial, phobic symptoms, conversion phenomena), and/or aggravation of premorbid psychiatric symptoms.
The threshold for specific pediatric assessments should be individualized to the child's clinical condition. A clearly defined medical assessment plan helps to assuage parent and child concerns about "missed" illness and avoid aggressive or unnecessary diagnostic testing. The clinician can assist in defining an appropriate limit to invasive tests and procedures and should not hesitate to communicate directly with the treating physician any questions regarding additional and/or continued testing and/or treatment.
Delirium is associated with rapid and fluctuating mental status changes that require multiple assessments over time to understand the clinical presentation.
Delirium can be a powerful clue to the presence of an unrecognized physical illness and can be a harbinger of serious physical decompensation. Given that virtually any physical condition or medication can be an etiologic agent, the clinician must consider multiple etiologies. The most common pediatric causes of delirium are central nervous system infections (i.e., bacterial meningitis) closely followed by medications (i.e., analgesics and steroids). While the physical cause is being investigated or addressed, the clinician may institute environmental changes and pharmacotherapeutic interventions (e.g., antipsychotic agents) that emphasize safety and orientation.
Mood and Anxiety Symptoms
Clinicians should be aware that mood and anxiety symptoms may present secondary to a general medical condition or its treatment. The depressive symptoms, weight loss, appetite changes, sleep problems, fatigue, loss of energy, difficulty thinking, loss of libido, and psychomotor agitation can overlap with numerous physical illnesses including neurological, endocrine, and infectious disorders as well as tumors, failure to thrive, anemia, uremia, and vitamin deficiencies. Analgesics, beta blockers, corticosteroids, immunosuppressants, interferon, oral contraceptives, and chemotherapy agents have been implicated in depressive syndromes. Neurological, endocrine, and cardiac disorders, as well as hypoxia, asthma, and diabetes mellitus, have been associated with anxiety. Stimulants, anticholinergics, antidepressants, caffeine, steroids, thyroid medications, estrogens, and theophylline have the potential to cause anxiety.
Behavioral Difficulties and Somatic Symptoms
Psychological distress related to the direct effects of a general medical condition can include behavioral difficulties (e.g., aggression) or somatic symptoms (e.g., pain), which can overlap with the indirect effects. Alterations in the child's mental status may reflect medication side effects (e.g., steroids, narcotics, chemotherapeutic agents) or general medical conditions (e.g., anoxia, hypoglycemia). The direct effects of a physical illness may also lead to psychological distress. For example, a child's participation in the assessment may be affected by his or her medical condition (e.g., a child with a cardiomyopathy may be too tired to talk).
Principle 5. Psychopharmacological Management Should Consider a Child's Physical Illness and Its Treatment.
The mental health clinician may be called on to make recommendations about the use of psychotropic medications, including interpreting medication side effects and potential drug interactions. Common target symptoms and medication considerations are outlined in Table 4 of the original guideline document.
The clinician should assess the potential influence of psychotropic medications on the child’s physical illness and its treatment. There should be a review of current medications, those being considered, and any over-the-counter or complementary preparations. The clinician should consider routes of administration and side effects of recommended medications. The clinician should understand the pharmacokinetic and pharmacodynamic interactions of the medications that are being used or considered.
The clinician recommends or prescribes medications to treat illnesses that impair different organ systems. It is helpful to follow the maxim "start low, go slow" when initiating medication, particularly in children with hepatic, gastrointestinal, renal, and cardiac diseases, which affect medication pharmacokinetics and pharmacodynamics. In general, psychotropic medication levels are not consistent indicators of either efficacy or toxicity in physically ill patients. If options exist, it is generally preferable to choose a medication with a short half-life and attempt to avoid introducing more than one medication at a time. When possible, medications should be selected that can be administered in a single dose, are easily titrated to an ideal dose, and do not require frequent laboratory monitoring for therapeutic or toxic levels. Multiple medications and demanding treatment regimens threaten adherence.
The clinician should be aware of medications and illnesses that have an impact on hepatic metabolism and blood flow or impair renal excretion. The clinician should be aware of discontinuation effects of psychotropic medications such as the selective serotonin reuptake inhibitor discontinuation syndrome.
The clinician must be alert to medications that have an inhibitory or inductive effect on a specific enzyme to help avoid potential drug interactions.
Medication Use in Specific Illnesses
Stimulants should generally not be used in children with preexisting heart disease (e.g., postoperative tetralogy of Fallot, coronary artery abnormalities, subaortic stenosis, hypertrophic cardiomyopathy). Patients with risk factors for sudden cardiac death (syncope, palpitations, chest pain, and family history of sudden cardiac death) should be referred for a more thorough cardiac evaluation before beginning treatment.
Pain complaints are affected by the child's ability to communicate, physiological and emotional thresholds, positive or negative reinforcement from parents and professional caregivers, and cultural factors. Infants and young children are at particular risk of being inadequately medicated for pain symptoms.
When using analgesic medications, it is important to adopt a preventive approach by treating pain early and aggressively along with medications for anxiety and depression as indicated. The clinician should be aware of potential interactions when combining analgesic medications with other medications, particularly those that could contribute to an increased risk of sedation or respiratory distress.
In disabling chronic pain, the clinician can help the family and the pediatric health care team adopt a rehabilitation model, which is focused on adaptation to symptoms that may not resolve.
Refer to the original guideline document for discussion of medication use in hepatic, gastrointestinal, and renal disease.
Principle 6. Psychotherapeutic Management Should Consider Multiple Treatment Modalities.
Psychotherapy provides a time and place where patients can effectively voice feelings of fear, anger, and sadness. Common elements of the interaction include support, reassurance, suggestion, explanation, and introspective exploration of the causes of a patient's feelings of demoralization. Several models of individual psychotherapies are used with physically ill children.
Supportive psychotherapy aims to reduce emotional distress through ego support, enhancement of coping mechanisms, and protection of self-esteem. The goal is to provide education, encouragement, and support by pointing out strengths and correcting misconceptions.
Narrative therapy or "the story that children tell" regarding their physical illnesses provides opportunities for children and their families to share, organize, process, and validate their experiences. The mental health clinician is afforded entry into both objective and personal attributes of the patient, which facilitates the assessment and subsequent interventions. The child's explanation and beliefs about how and why an illness developed encapsulate the child's deepest convictions and confusions.
Cognitive-behavioral therapy (CBT) provides concrete structure to augment the sense of mastery and control, alter maladaptive patterns of thinking, improve problem-solving and social skills, and modify physiological responses. CBT uses behavioral activation, cognitive restructuring, and problem-solving skills to change maladaptive cognitions and coping strategies. It is important to recognize that emotional responses may not be due to cognitive distortion, but rather an appropriate reaction to reality-based distressing life events (e.g., diagnosis of human immunodeficiency virus). Problem-solving and anger control CBT techniques have been used for children facing difficult medical events.
Behavior modification interventions target improvements in functional ability and decrease attention to complaints or negative behaviors. Systematic desensitization may be implemented for anxiety symptoms. Behavioral programs with appropriate incentives and an effective system of monitoring and rewards can be tailored for individual patients to reinforce desired behaviors (e.g., medication adherence). Biofeedback, relaxation training, imagery, and hypnosis are based on the premise that decreasing emotional distress and autonomic arousal may improve not only the child's emotional outlook, but also the physical condition (e.g., hypertension, asthma, headache, diabetes mellitus).
Refer to the original guideline document for information on procedural preparation and play strategies, group therapy, and mental health clinician countertransference issues.
Principle 7. The Family Context Should Be Understood and Addressed.
More than 50% of families with a physically ill child establish a healthy level of functioning, although individual family members may be prone to anxiety, depression, anger, and somatic complaints. The degree of predictability, amount of disability, associated stigma, degree of monitoring required, and prognosis are illness factors that have an impact on family adjustment. In addition, parental behavior should be understood in a historical context based on family beliefs and previous experiences with illness and death.
At a minimum, parents experience the vulnerability of their child and cope with their inability to protect their child from disease. Successful adaptation requires parents to develop a good understanding of the illness and recognize its potential complications and treatment.
Studies have documented both beneficial and deleterious effects of parents' affect and behavior on the physically ill child. Supportive responses are preferable, including a calm parental presence. However, parental anxiety, criticism of the child's emotional reactions or behaviors, threats, punishment, or excessive parental attention to a child's distress can exacerbate a child's distress and compromise coping abilities. The continuation of familiar "family rules" and appropriate limit-setting are helpful in signaling children that they are safe. On the other hand, overprotectiveness has been shown to have negative consequences.
Because a child's illness can have prolonged effects on parents and siblings, the mental health clinician should consider a follow-up screening or assessment for depression, anxiety, and posttraumatic stress symptoms several weeks or months after an initial evaluation.
Ideally, the clinician should feel comfortable meeting with family members in various permutations (e.g., the family as a unit, siblings or parents with or without the ill child, each individual alone).
It is incumbent on the clinician to form an alliance with parents and involve them actively. Because parents' sense of competence is easily threatened by medical problems, they may assume that sophisticated approaches are beyond their capabilities. The clinician can help define which areas require further education, but in most circumstances, he or she can remind parents of the experiences, strategies, and skills they already possess. In addition to acquiring formal education about the child's medical needs, caregivers can benefit from learning strategies to help cope with the psychosocial ramifications of the illness (e.g., administering an insulin injection in a nonpunitive way that minimizes parental guilt).
Age-appropriate education for parents about their child's illness sets the stage for the child to assume increased responsibility for his or her care (e.g., to perform urinary self-catheterization). Parents often know their children best and can make excellent judgments about such milestones. However, some parents may feel uncomfortable about or unwilling to cede their responsibilities, perhaps because of inadequate understanding or their own emotional needs.
Refer to the original guideline document for information regarding siblings.
Principle 8. Adherence to the Medical Treatment Regimen Should Be Evaluated and Optimized.
Nonadherence may result in poor medical outcome, increased financial costs, and decreased quality of life. Individual, family, disease, and treatment correlates have been identified as important risk factors for treatment nonadherence (see Table 5 in the original guideline document for risk factors associated with pediatric treatment nonadherence). Studies on the efficacy of treatment interventions responding to these correlates have been limited by small sample sizes, inability to generalize findings, and difficulties standardizing adherence measurement. Based on the major etiologic factors related to adherence, current treatment approaches involve educational, organizational, behavioral, and psychotherapeutic interventions (see Table 6 in the original guideline document for a treatment algorithm for pediatric treatment adherence).
Principle 9. The Use of Complementary and Alternative Medicine Should Be Explored.
Although often underreported by patients and parents to health care providers, the practice of complementary and alternative medicine (CAM) seems to be increasingly prevalent in children, particularly among those with chronic illnesses. Therefore, it is important for the clinician to explore with the family their use of CAM treatments. The clinician should be open to discussion with patients and families of the risks, benefits, and gaps in knowledge pertaining to these treatments, recognizing their motivation to seek all potentially effective interventions. Patients and families should be helped to feel comfortable discussing CAM with their pediatric health care team.
Principle 10. Religious and Cultural Influences Should Be Understood and Considered.
Cultural and religious beliefs may affect the child's and family's understanding of medical issues, acceptance of intervention, treatment adherence, and, ultimately, prognosis. There is growing evidence that racial and ethnic minorities are at greater risk for morbidity and mortality with a number of chronic illnesses, particularly those associated with social and behavioral factors. Recognition of the family's beliefs and traditions may identify potential sources of support for the child and facilitate the working relationship between the family and professional caregivers.
When differences of opinion arise, the mental health clinician should help assess the medical and psychological risks and benefits of the proposed intervention or withholding (e.g., when a Jehovah's Witness family refuses a live-saving transfusion). It is incumbent on the clinician to recognize that such convictions may hold profound meaning to the family, rather than being a manifestation of "resistance." Clinicians should consider others' perspectives and wishes, educate themselves about a family's beliefs, be aware of their own countertransference, and always be respectful.
Language barriers may contribute to confusion, misunderstanding, isolation, suboptimal care, and errors in diagnosis or treatment. Although some families may feel uncomfortable with a stranger serving as an interpreter, it is preferable to avoid the temptation of allowing the child or a family member to translate. Ideally, the interpreter should have experience working in the medical care setting. When an on-site interpreter is not available, speakerphones or telephonic interpretation services can be used. Hospitals and outpatient medical facilities are required to provide interpreter services to meet the needs of a culturally diverse patient population.
Principle 11. Family Contact with Community-Based Agencies Should Be Considered and Facilitated Where Indicated.
Physical illness may interfere with the child's academic and social functioning as well as engender anxiety in peers and teachers. The mental health clinician can help improve collaboration between health care and school systems. School interventions can include educating school personnel and peers about the physical illness and its treatment, advocating for special services, participating in academic decisions, or identifying activities the child can participate in despite time or physical limitations.
The federal special education law, the Individuals With Disabilities Education Act, in combination with a state’s special education law(s), guarantees students with disabilities in public schools an Individualized Education Program designed to meet their unique needs. These laws ensure that a physically ill child can attend school with necessary supports (e.g., transportation, accessibility, aides, computers, communication devices). The Individualized Education Program documents specific needs relevant to the physical illness, and it may be revised if warranted by changes in the child's functioning. When the child's level of physical disability (e.g., heart failure) prohibits school participation, homebound instruction should be instituted (illness permitting). If school absence seems to be primarily for emotional reasons, a plan should be developed to return the child to school. The clinician can help parents to secure appropriate and necessary services for the child.
Refer to the original guideline document for information on social service agencies and community resources.
Principle 12. Legal Issues Specific to Physically Ill Children Should Be Understood and Considered.
The mental health clinician should have a working understanding of the legal and forensic issues related to treatment consent, confidentiality, and privilege. The clinician should be aware of relevant statutes in his or her jurisdiction and should know when to obtain legal consultation.
Consent and authorization are required for all medical treatments and procedures except in unusual circumstances. Informed consent requires that patients or legal guardians (if the patient is a minor) receive from their health care providers a full and reasonable explanation of the risks and benefits of treatment, including no treatment, and possible alternative treatments. This issue is more complicated with children, because minors are generally considered to be incompetent to make medical treatment decisions, and parents or legal guardians provide the consent. There is increasing recognition that most adolescents have the capacity to participate in decision making and a greater willingness by parents and the medical team to include them in the decision making. Assent (an agreement to participate) is a method of involving minors in treatment decisions. The clinician can serve an invaluable role in helping the pediatric health care team and family navigate the developmental issues involved in the medical decision-making process. Important exceptions to the rule requiring parental consent before treatment include emergency treatment, emancipated minors, mature minor exception, reproductive health, alcohol and substance abuse treatment, and mental health treatment.
The clinician must be alert to issues of confidentiality and privilege. The clinician is legally and ethically mandated to protect the confidentiality of information in his or her clinical work. Privilege governs the disclosure of information in legal and administrative proceedings. These issues can be complicated in physically ill children whose parents are entitled to access information to help make treatment decisions or to enhance continuity of care.
Principle 13. The Influence of the Health Care System on the Care of a Physically Ill Child Should Be Considered.
The mental health clinician's appreciation of the ramifications of physical illness should include recognition of the complex practical and financial burdens that affect the child's and family's emotional state, behaviors, lifestyle, illness treatment, and, ultimately, health outcome.
Children with both acute psychiatric needs and complex or life-threatening physical conditions who require care that cannot be managed responsibly in an intensive psychiatry treatment setting can be hospitalized on a medical unit. Because such an environment does not thoroughly address the patients' psychiatric needs, some hospitals create units with both psychiatric and medical resources.
The clinician, pediatric health care team, and family share the responsibility of securing a safe environment for the child and advocating so that financial concerns do not compromise care.
As individuals or as part of a local or national organization, clinicians should act proactively to educate and effect appropriate changes (e.g., advocating that a hospital be financially responsible for the consultation-liaison service, consulting to third-party payers, and presenting evidence of needs to a state or the federal legislature). In addition to the potential for decreasing direct and indirect financial burdens to patients, families, and society, timely mental health intervention serves to maximize the quality of life of physically ill children and their families.