17 Psychological Symptoms

Chase Samsel, Kathleen Perko, Lori Wiener, and Maryland Pao

When a child faces a chronic or life-threatening illness, families inherit myriad challenges. First and foremost, the family is thrust into living with uncertainty. Concerns about the child’s health status—the diagnosis, prognosis, and rigors of the treatment regimen—are accompanied by additional stresses, including parental ability to maintain employment with associated financial implications, the child’s ability to negotiate school and maintain relationships, and the ongoing challenges of difficult events or traumas that occur in everyday life. Worry and sadness are natural psychological reactions in this context. When should clinicians be concerned that these responses, secondary to the illness or treatment, are becoming pathologic in and of themselves? When do worry and sadness become clinically relevant anxiety and depression?

Symptoms such as anxiety and depressed mood are evaluated on a continuum (Figure 17.1).

In general, increasing frequency of a symptom, lasting longer than two continuous weeks, and the presence of significant impairment in functioning or quality of life, or the expressed desire for death should alert clinicians to pursue an in-depth mental health assessment to explore the need for specific psychological intervention. Such assessments must consider the cultural background of the family because psychological symptoms may be either minimized or emphasized in certain cultural contexts.¹

There are junctures in the illness where strong psychological reactions may be expected. The diagnosis of a life-threatening illness such as cancer and the subsequent intensive treatment may be disruptive, frightening, and potentially traumatic for children and their families. Anxiety or depression may emerge at multiple stages of illness: during and immediately after diagnosis and treatment from the uncertainty of outcome, as well as during survivorship, treatment for relapses, and end-of-life care and when worries emerge about how death might affect the family. Hospitalization may create more anxiety in children under the age of 5 years or in those who already had difficulty separating from caregivers. Just thinking about chemotherapy or hospital smells may trigger feelings of anxiety. Youth, particularly adolescents, are concerned about the effects the illness and treatment may have on their appearance. Additionally, the further a child gets from a normal routine, the more anxiety-inducing it may be to try to reenter his or her previous life with school, family, and friends. Anxiety, depression, posttraumatic stress, disordered sleep, and adequate pain control must all be addressed for optimal care to be provided.

Anxiety emerges in response to perceived or real threats to our physical integrity or our sense of self (i.e. our identity or self-regard). It is a universal but subjective experience often based on a person’s knowledge, judgment, expectations, and previous experiences. Anxiety can range from transient mild discomfort or uneasiness to pervasive and paralyzing fear. It is accompanied by psychological, cognitive, and behavioral symptoms. Psychological symptoms of anxiety include dread and anticipation of negative outcomes, an inability to turn off one’s thoughts, and feelings of helplessness. Physical symptoms include feeling tense, palpitations, chest tightness or shortness of breath, nausea, stool urgency, tremors, crying spells, and difficulty sleeping. Behaviorally, children may become jumpy, irritable, avoidant, talk too fast, and have trouble concentrating.

Anxiety is considered to be problematic when its intensity and duration begin to affect functioning and quality of life, especially in the context of childhood cancer or other life-threatening illness. It can develop as a primary disorder, as a psychological reaction to illness, as a secondary disorder (e.g., due to medication side effects, neurotransmitter-secreting tumors, neurologic injury) or may be comorbid with other psychiatric disorders such as depression. Anxiety may be acute or chronic. It is important to identify any underlying treatable medical etiologies for new-onset anxiety (Table 17.1). For example, akathisia, a common side effect of medications, may be misdiagnosed as anxiety in children and young adults.

Anxiety disorders are common in the general population in the United States, with the prevalence of any lifetime anxiety disorder estimated to be 31.9% among adolescents.² Anxiety is common in children, with a lifetime prevalence of any anxiety disorder at 15–20%, representing all levels of severity.³ In children with chronic illness, an estimated 20–35% have an anxiety disorder. In a study assessing anxiety in pediatric oncology patients, 14.3% of 63 children met diagnostic criteria for an anxiety disorder.⁴ The prevalence of anxiety in other disorders, such as asthma, ranges from 9%⁵ to 37%,⁶ while in diabetes anxiety symptoms range from 0.8% to almost 20%.⁷ One study found anxiety symptoms persisting 10 years after diagnosis of diabetes.⁸ High rates of anxiety, up to 63%, have been reported in children with epilepsy.⁹ Among adolescent patients with cystic fibrosis, researchers found a 22% prevalence rate of anxiety.¹⁰ Clearly, age at onset, sample selection, method, and timing of appraisal of anxiety disorders need to be considered when interpreting the literature on anxiety disorders in chronically ill children.

Recognition of severe anxiety is important because it may affect symptom management, treatment adherence, and/or the ability of the patient to cope with the illness. Severe anxiety may even exacerbate preexisting physical conditions such as nausea, pain, and irritable bowel syndrome. Procedural anxiety related to the anticipation or performance of specific medical procedures could interfere with treatment. Anxiety is also common in parents and can exacerbate the child’s anxiety. It is critical to document if there is a family history of anxiety and monitor the parents’ anxiety when discussing treatment options and decisions, communicating with them throughout the course of treatment, and coordinating posttreatment care.

Posttraumatic stress has emerged as a possible model for understanding cancer-related distress across family members during the illness and beyond.¹¹ Pediatric medical traumatic stress is a set of psychological and physiological responses of children and their families to pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences. Traumatic stress responses include symptoms of arousal, reexperiencing, and avoidance or a constellation of these symptoms consistent with posttraumatic stress disorder (PTSD) or acute stress disorder.¹² Traumatic stress responses are more related to one’s subjective experience of the medical event than its objective severity and are seen in children as well as in parents across the course of treatment and into survivorship.¹³ Anticipatory anxiety can develop initially or during the course of treatment, and clinicians need to monitor vigilantly for increased irritability, resistance, and outright refusal to cooperate with procedures. Many clinicians have found that providing anticipatory guidance about normative psychological symptoms (including anxiety about tests, procedures, and hospitalizations) to children and their parents is helpful in decreasing the stress of uncertainty.

Evaluation of Anxiety in a Pediatric Setting

Assessment by a palliative care team member for anxiety begins with a careful medical history, including the current subjective symptoms to rule out possible medical conditions precipitating anxiety in the child, such as the use of drugs or alcohol (Box 17.1).

It is critical to evaluate for pain because pain can affect mood and anxiety (see Chapter 23). It is also imperative to ask if the child has a history of anxiety disorders, current or previous use of anxiolytic medications, and any family psychiatric history, especially anxiety or mood disorders. It is important to learn about previous anxiety and coping around the initial diagnosis in child and caregivers, anxiety surrounding hospitalizations, fear of needles and/or procedures, anticipatory anxiety, or the physical effects of illness and any treatments or medications. Be specific as to whether there are rooms, people, sights, times during the day, days of the week, sounds, or smells that the child finds aversive to better understand how to modify these factors. The clinician should be alert to previous difficulties with separation from home and/or other familiar settings or people. Worries about death or dying need to be explicitly questioned, using developmentally appropriate language. Assessment of sources of anxiety such as academic and social impact and financial burden of illness may add important information as well as family understanding of anxiety in the system. Screening and assessment tools for anxiety include the State-Trait Anxiety Inventory for Children (STAI-C), the Multidimensional Anxiety Scale for Children (MASC), and the Generalized Anxiety Disorder Scale (GAD-7) including others.¹⁴

A thorough assessment for an anxiety disorder may include a review of

• Heart rate, respiratory rate, and temperature

• Complete blood count

• Glucose

• Electrolytes

• Blood urea nitrogen

• Creatinine

• Liver enzymes

• Thyroid function tests

• Urinalysis with toxicology screening

• Arterial blood gas and/or oxygen saturation measurements to rule out respiratory causes

• Central nervous system scans

Depression describes transient sad feelings in combination with a sustained low mood leading to impairment in overall functioning; it may present with both psychological and physical symptoms. In general, the most prominent symptoms of depression are sadness, dysphoria, and anhedonia (inability to experience pleasure). Depression may exist as a primary disorder, as a psychological reaction to illness, or as a secondary disorder to an organic etiology, or it may be comorbid with other psychiatric disorders such as anxiety. Even if patients do not meet full diagnostic criteria for a depressive disorder, they should still receive appropriate clinical follow-up and continued monitoring. (Table 17.2)

Childhood depression does not look identical to adult depression and may be more difficult to diagnose, particularly with a concurrent medical illness. Children are more likely than adults to present with irritability, guilt, and somatic complaints. Physical symptoms include joint, limb, back, and abdominal pain; headaches; gastrointestinal problems; fatigue; weakness; and changes in appetite. Depression may be expressed in apathetic mood, nonadherence, and changes in behavior, including regression. Depression affects school performance and peer relationships and can be associated with substance use and suicidal thoughts and behaviors. When diagnosing depression in a child with a medical illness, consideration must be given to the fact that the medical symptoms and/or side effects of serious illness can be confused with, or coexist with, symptoms of depression. Depressive responses may be a normal response to the diagnosis and treatment of cancer and to medical events that occur during treatment. Physicians and nurses are less accurate at assessment of depression than of physical distress and can sometimes over- or underestimate psychological distress because of strong personal feelings toward patients, their own burnout, and/or lack of background training in behavioral health. However, persistent depressed mood or irritability associated with anhedonia and withdrawn behavior that lasts for more than half the time during a continuous period of 2 or more weeks should signal the need for additional monitoring and intervention.

The lifetime prevalence of a major depressive disorder in the general US population is 16.6%. Approximately 2% of school-age children¹⁵ and 11% of adolescents² meet criteria for major depressive disorder (MDD), with gender differences becoming more apparent with age (females greater than males).^2,15 A recent updated meta-analysis described a 22% higher prevalence of depression in chronically ill children compared to their non–physically ill peers.¹⁶ Generally, studies using clinical interview methodologies rather than self-report tend to report higher levels of depression. Some large samples have shown no difference in the prevalence of depression in children with other conditions such as asthma,⁶ while others¹⁷ found that 16.3% of youths with asthma compared with 8.6% of youths without asthma met criteria from the Diagnostic and Statistical Manual of Mental Disorders (DSM) for one or more anxiety or depressive disorders. The prevalence of depression in youth with diabetes is believed to be two to three times greater than in those without diabetes.¹⁸ A study⁸ found that in the 10 years of post-diabetes diagnosis, 27% of the children and adolescents developed depression. Children with complex partial seizures and absence epilepsy are five times more likely to have a mood or anxiety disorder than are healthy children.⁹ Depression, although common, is often unrecognized and untreated in children and adolescents with epilepsy¹⁹ and cystic fibrosis.¹⁰ These data, taken across chronic illnesses, suggest that screening at regular intervals for depression and anxiety should be considered in chronically ill children, but rates may vary with the particular disease group.

Depression affects quality of life and psychological well-being. In the medically ill, depression may affect symptom management, treatment adherence, and thus medical outcomes. Depression is associated with higher morbidity, increased hospital length of stay, and increased complaints of somatic symptoms, and it is a risk factor for nonadherence with medical care. As with anxiety, patients may feel depressed at multiple points throughout the illness. The diagnosis and subsequent arduous treatment for many serious conditions may trigger feelings of overwhelming helplessness and depression and lead to delays in seeking or receiving care.

At terminal stages of an illness, clinicians can help the child and family work through feelings of loss and should recognize symptoms of depression as part of the grieving process. Whenever possible, it is important to find ways to help children communicate their worries to family or the clinical team so that the diagnosis of depression or anxiety can be properly made or ruled out. For example, emotional withdrawal should not be confused with depression. Emotional distancing provides the opportunity to conserve energy to focus on a few significant relationships rather than dealing with multiple painful separations.²⁰ In addition, chronic and severe pain is exhausting, and, once under control, the child’s distress may improve. Therefore, it is essential that the palliative care team assess for the role that pain and withdrawal might have in depressive symptoms. Yet, as psychiatric symptoms can be reactive to the stresses and disruptions being experienced, a good history that includes knowledge of these conditions can help the palliative care team anticipate problems and provide them with the time to engage additional resources as needed.

One of the most frequent reasons for a psychiatric consult in a pediatric hospital setting is depression, especially within 1 year of a cancer diagnosis. Pediatric oncologists in the United States commonly prescribe antidepressants despite the lack of robust randomized controlled trials of antidepressants in youth with cancer. A survey of 40 pediatric oncologists found that half had prescribed a selective serotonin reuptake inhibitor (SSRI),²¹ while a review of a single children’s hospital reported that 10% of pediatric oncology patients received an antidepressant medication within 1 year of diagnosis.²² On admission to the National Institutes of Health (NIH) Clinical Center, 14% of pediatric oncology patients had been prescribed a psychotropic medication.²³ These prescribing clinicians appear to be responding to significant distress associated with medical illness and its treatments.

Evaluation of Depression in a Pediatric Setting

A detailed patient history is needed to determine the etiology of psychological and physical symptoms consistent with depression. Symptoms of depression can be difficult for clinicians to differentiate from medical and treatment side effects of cancer, which often include vegetative symptoms such as fatigue, decreased appetite, and sleep disturbances. Careful attention is needed to discern whether physical symptoms can be attributed to the illness process and/or treatment, or to a depressive disorder. Often, the diagnosis of depression in pediatric cancer patients is based on psychological symptoms such as anhedonia, feelings of worthlessness, guilt, feeling like a burden to others, and/or suicidal thoughts and actions.

Determining whether depressive symptoms are related to an expected course of grief and demoralization or to a clinical depressive episode is an important consideration, particularly in patients at the end of life. Consideration must be given to the patient’s and family’s psychiatric history, which may reveal genetic vulnerability for mood disorders. Evaluation for depression includes the assessment of symptom severity, duration, and impact on functioning and quality of life. Both the patient and primary caregivers should be interviewed to obtain information most comprehensively.

Assessment for depression in a child begins with a careful medical history including the current subjective symptoms to rule out possible medical conditions precipitating depression, such as use of drugs or alcohol (Box 17.2; see also Box 17.1). It is critical to evaluate for pain, as significant pain can affect mood and anxiety (see Chapter 23). It is also imperative to ask if the child has a history of mood disorders, previous suicide attempts, current or previous use of prescribed medications, or a family history of psychiatric disorders, especially suicidal behavior. It is extremely important to elicit a history of prior losses, including serious illness and/or death of family members, parental divorce, loss of pets, disappointments in school or social relationships, bullying (including cyberbullying), and how the child has, until this point, coped with his or her illness. Screening and assessment tools with high reliability and validity often require extensive time and expertise for use (e.g., Child Behavioral Checklist [CBCL], Behavioral Assessment Scale for Children [BASC]) whereas briefer tools are less reliable and valid (e.g., Patient Health Questionnaire for Adolescents [PHQ-A], Childhood Depression Inventory [CDI]¹⁴).

• A review of vital signs and laboratory tests and/or procedures including heart rate respiratory rate and temperature

• Complete blood count

• Glucose

• Electrolytes

• Blood urea nitrogen

• Creatinine

• Liver enzymes

• Thyroid function tests

• Urinalysis with toxicology screening

• Central nervous system scans

• Possibly an electroencephalogram (EEG)

Completed suicide is rare in children. The prevalence is unknown in children with chronic illness because few healthcare professionals assess for suicide risk in pediatric patients presenting with medical complaints.²⁴ Suicide risk increases with age in the general population. Increased rates of suicidal ideation are found in pediatric epilepsy,⁹ adult survivors of childhood cancer,²⁵ and in adults with medical diagnoses that are also common in childhood such as asthma²⁶ and pulmonary disease.²⁷ Given that many previous studies indicate that chronic physical illness is a risk factor for suicide in adults^28,29 and adolescents³⁰ with variability by individual underlying medical diagnoses, a case has been made for universal suicide risk screening in medical settings.³¹ There are now pediatric and adult suicide risk screening tools that have been validated on general medical populations.³² While many children who attempt suicide or die by suicide are depressed, studies have that shown up to 20–60% of youth did not have clinically significant depression at the time of their attempt.³³ Therefore, assessing risk specific to suicide in addition to depression is critical. To provide a comprehensive evaluation, clinicians should inquire about suicidal ideation and history of previous suicide attempts and/or ideation, along with the stated intent and belief of lethality of attempt of suicide with or without a plan. Other risk factors include comorbid psychiatric disorders; symptoms of helplessness, hopelessness, impulsivity; social isolation; uncontrolled pain; advanced disease; male or nonconforming gender; history of abuse or violence; and family history of suicidal behavior or psychopathology.³⁴

Ongoing assessment of suicide risk begins with the first report of suicidal ideation, including passive thoughts such as being tired of fighting or feeling it would be okay not to wake up from sleep. Other specific times for assessment should occur with any change in mental status, during worsening of illness-related symptoms and pain, and at times of management transition such as a change of healthcare provider. A clinical pathway for management of a positive screens for suicide risk in pediatric hospitals assists clinicians in determining the range of possible interventions.³⁵ For example, if a patient is found to have acute current suicidal ideation (which is actually rare in a medical setting), immediate interventions should include environmental restrictions, particularly removal of any firearms and other lethal means from the home, appropriate support, observation, and monitoring at home or in the hospital if actively suicidal, with available care providers to be contacted in an emergency. More commonly identified are passive suicidal thoughts or a history of past behaviors which should be taken seriously for the distress and possible depression they indicate; this positive screen may not always require immediate one-to-one monitoring. Specific mental health consultation is essential to further assess suicidal comments even in the medically ill. Treatment must simultaneously address underlying psychopathology, disease-related factors, and pain, and may include psychopharmacology and/or psychotherapy.³⁶

Interventions for Anxiety and Depression

Psychotherapeutic Interventions

One of the challenges in evaluating anxiety or depression in children is the differentiation of symptoms that are secondary to the physical illness or treatment. Somatic symptoms of depression, such as difficulty sleeping or fatigue, are also common symptoms of both depression and physical illness. It is also important to differentiate symptoms that might be interpreted as depression because they may more accurately be an expression of grief or demoralization. Such symptoms, regardless of whether they are normal rather than pathological, warrant intervention. Therapeutic interventions are designed to reduce distress and help the child integrate the facets of his or her illness and life into expression.³⁷

Psychotherapy is an established and effective treatment modality within adult oncology.³⁸ In pediatrics, the role of psychotherapy continues to evolve. Psychotherapy provides an opportunity for the child to reintegrate shattered facets of their life³⁹ and a place to develop positive emotional responses and learn coping skills to address changes in their day-to-day life, health status, and relationships. As each child is unique, the approach to the particular type of psychotherapy needs to consider a therapeutic method that is individualized, flexible, multidisciplinary, and inclusive so that it includes all members of the child’s social system who may be impacted by the illness.⁴⁰

Considering that parents are an integral part of the child’s social system and may contribute to the onset and maintenance of anxiety and depression, parallel parental or family intervention should be offered.^41,42 Familial and cultural beliefs such as protecting the child from being included in medical treatment discussions may need to be further explored, as these often-unspoken attitudes may interfere with communication between the team and the patient. A thorough assessment of the characteristics of the child, psychosocial concerns and/or psychiatric history, background of illness, and the therapy being considered must precede deciding on a specific therapeutic modality. The depth and accuracy of the assessment and how these factors impact on each other often drives the choices of therapy and therapist, allowing for optimal conditions for a successful therapeutic relationship and outcome. Several types of psychotherapy have been very effective with seriously ill children.

For some, psychotherapy—through words, play and art—can provide a vehicle for communication of profound grief. For others, different forms of coping skill-work and/or self-expression are equally powerful and effective, including behavioral and cognitive techniques, play, bibliotherapy, storytelling, writing, art, music, and animal-assisted therapy. Most often, a combination of these specialized treatments is used.

Behavioral and cognitive behavioral approaches for reducing procedural distress are well-established.⁴³ These should be tailored developmentally and include distraction, guided imagery, self-hypnosis, biofeedback, and relaxation.⁴⁴ Parents and staff members can be trained in the use of these approaches. Other treatments for anxiety and depression include family therapy and psychodynamic psychotherapy to reduce anxiety and provide patients and families with adaptive strategies, identify underlying causes of dysfunction and distress, and focus on meaningfulness.

Effective treatment of a depressive disorder is best accomplished in collaboration with a mental health professional. Clinical social workers, child psychologists and psychiatrists, and marriage and family therapists familiar with children with serious illness should be consulted in this process. There are few reports of interventions for depression that are specific and exclusive to pediatric cancer or other life-threatening illnesses. Fortunately, literature in this area is growing and the results of more general literatures are relevant. For example, individual psychotherapy for depression, especially cognitive-behavioral therapy (CBT), is effective for youth in general, both alone and in combination with medication.⁴⁵ Emerging adult meaningfulness and psychodynamic-based psychotherapies such as CALM and Dignity Therapy have also shown significant benefits and could be appropriate for some adolescents and young adults with advanced illness and/or facing end-of-life care.⁴⁶

While most adults use words to express emotions as well as to address conflicts, play is the language and vehicle for a child’s expression and the mechanism for therapists to promote healing. There are a variety of play therapy approaches to reduce the anxiety and depression that critically ill children may experience at the end of life. To create a therapeutic relationship based on trust, safety, and acceptance, a nondirective or child-centered approach during the first few sessions with the child is useful.⁴⁷ The therapist provides several games, objects, and therapeutic toys the child can choose from. These may be medical play materials such as oxygen masks, alcohol pads, syringes, blood pressure cuffs, or stethoscopes. Objects that the child can control and can be used to facilitate mastery include modeling clay, bubbles, finger paints, and sand. Board games created to allow the child to share end-of-life worries, concerns, and fears in a nonthreatening and dynamic way can also be informative and effective in identifying major stressors.⁴⁸ Because an important goal is to create open communication and closeness between the child and parents, it may be useful to have the parents join the child in playing such games. For the child who may be too ill or weak to play, vicarious enjoyment and expression may be accomplished by playing for the child. Creating an environment of safety and trust that fosters freedom and acceptance is particularly significant for children who often experience a loss of control, privacy, and freedom of choice.

Bibliotherapy is an interactive therapeutic intervention that uses literature and storytelling as a means to reduce anxiety, gain insight into behavioral or psychological symptoms, enhance self-understanding, and promote coping skills and personal growth.⁴⁹ Stories can shape one’s response to later events, make connections between seemingly random events, address unfair suffering, and provide meaning. After an assessment and the identification of clear therapy goals, the basic technique begins with a therapist choosing a story to read to a child that includes characters the child may relate to and whose struggles and triumphs the child can identify with. The therapist reads the story, followed by a discussion of the themes by the child and the therapist.^50,51 The child may be asked to suggest additions or changes in the story, or they may share stories that are similar but have different outcomes. Together, the child and therapist might write a book or story that exemplifies the individual child’s struggles and strengths and gives meaning to his or her life. By externalizing a problem and recreating the ending, children can begin to experience a sense of mastery over their circumstances.

Bibliotherapy is effective in groups as well as in individual sessions. For children able to address end-of-life concerns, reading books allows group participants to talk about their personal thoughts about death, transitions, spiritual concerns, the afterlife or even to make together a book that has a different ending.⁵² Viewing films can also be used to impart therapeutic messages and help the child obtain greater insight into his or her own life circumstances.^53,54 The goal of each of these techniques is to foster emotional expressiveness, which in turn reduces psychic distress.

Writing is another useful medium for working with medically ill children. Anxiety about the unknown is common and therefore, at the end of each session, providing validation of one’s existence and a sense of continuity from one session to the next is useful. It can be helpful to complete a page of a personalized workbook for children living with a life-threatening illness⁵⁵ or a list of feelings or statements written by both the therapist and child about what activities and feelings were evident that day. A narrative therapy approach of letter writing, postal or e-mail, between sessions can also be used to maintain open communication. Computer-assisted art therapy⁵⁶ can enable online interactive communication between the child and the therapist in real time.

Children often fear that they will be forgotten after death. The workbook and letters written during sessions may be material that the children wish their parents to keep and cherish following their death. “My Mock Will,” a page in the workbook, This Is My World, created by and available through the National Cancer Institute, has been especially instructive for parents who were not able to communicate with their child about their last wishes or who the child would like to have some of their most meaningful belongings. As death approaches, feelings of loneliness and the need for expression often intensify. Adolescents particularly appreciate the opportunity to use writing techniques to counteract their anxiety, sadness, and grief. This can take the form of a personal narrative, song, poem, or combination of these. Many find that addressing issues such as funeral arrangements, giving away belongings, and a discussion of how they wish to be remembered⁵⁷ are less threatening through writing than verbal communication. Offering children the opportunity to use creative writing to document what they would want to happen after they are gone and to leave something of themselves behind can often lessen anxiety—despite family and team fears of the opposite—because it affirms that an important part of their existence is still under their control.

Art therapy is another creative technique to enable children to express their conscious and unconscious concerns and externalize their fears and anxieties. Art media can be used as memory-making or legacy-building activities for the child to do alone or with family members. Treasure boxes, pillowcases, outlining and then painting of a parent and child’s hands touching, and family quilts, especially those that includes photographs, can also be a potent form of self-expression and healing. Structured art therapy consists of asking children to draw consistent themes, once or repeatedly. Examples include the “change in family” drawing and the “scariest” drawing.^39,50 Another impactful art exercise is the mandala.^39,58 Instead of asking children to fill in a blank circle to express how they are feeling at this particular moment, Sourkes created a structured intervention that includes defining a topic that is central to the child.³⁹ This is followed by a guided visualization of that topic, and then an active approach in which the child draws the identified feelings within the circle, representing their importance through chosen colors and proportions. This technique allows the therapist to ask highly focused questions and interpret the drawings within the context of the individual child’s reality.³⁹

Photography can be used as a powerful avenue to reduce distress, increase a sense of control, and promote family interactions and communication. Following instructions pertaining to confidentiality, providing a child with a camera and asking them to take pictures (e.g., daily pictures for a specified number of days) that will show others what it is like to be sick can provide the family and providers insight into the child’s perspective. Self-portraits are perhaps the most powerful and valuable photographs to work with therapeutically. Asking the child to choose where they would like their portrait taken or what they would like to be doing or wearing when their portrait is created allows others to bear witness to what is most important to that child. Using phototherapy techniques, children can connect the past with the present,⁵⁹ critical steps in integrating their life experience.

Animal-assisted therapy has regained popularity. Animal-facilitated therapy (AFT) or “pet therapy,” has had an increased presence in the literature with a surge of recent research methodologies exploring this complementary alternative medicine (CAM) intervention.⁶⁰ Some hospitals and long-term care facilities have also reported placing an animal on a unit, with patients and staff sharing responsibilities for the animal’s care. Dogs are most commonly involved, although therapeutic activities with cats, fish, guinea pigs, dolphins, and horses have also been described. Interaction between the patient and animal may simply be an informal, unstructured visit that includes play, petting, and talking with the animal and its owner. The presence of an animal seems to lessen the threat of the hospital setting, reminding many children and families of their own pet. Time with the animal may also be integrated into the goals of a therapeutic intervention. For example, a child who is resistant to leaving the hospital room or having social interaction may be willing to take a dog for a walk around the unit. Similarly, for a child who is feeling alone, snuggling with an assist animal can provide a sense of unconditional love, acceptance, and a connection to the world outside of the hospital environment.

The contact comfort of tactile stimulation and the gentle presence of the animal has both physical and psychosocial effects on children.⁶¹ Animal-assisted therapy tends to reduce heart rate, blood pressure, and respiration rate, thus inducing a physiologic relaxation response. Reduction in anxiety and improvement in confidence, self-image, and self-esteem has been reported.⁶² Children participating in animal-assisted therapy may also experience a significant reduction in pain, perhaps due to the release of endorphins that occurs during interaction with a friendly animal.⁶³ Additionally, the animal provides a distraction from pain and the hospital experience as well as direct enjoyment. According to a review of articles addressing the healing power of the human–animal connection, the affection shared between the child and animal promotes healing and provides energy and activation. Patients also enjoy having a sense of control and a sense of calm when they are able to help care for the animal.⁶¹

The need for intervention may continue after the end of treatment or throughout critical periods of development in a child with a chronic illness. For adolescent survivors of childhood cancer and their families, participation in a combined CBT and family therapy intervention reduced symptoms of traumatic stress in all members of the family.^74,75 Resources for interdisciplinary members of pediatric oncology teams to promote trauma-informed practice are found in the Medical Traumatic Stress Toolkit⁷⁶ produced by the National Child Traumatic Stress Network and available by download at www.nctsnet.org/nccts/nav.do?pid=typ_mt_ptlkt.

Team Reflection

Sandra was a 16-year-old high school sophomore when she was diagnosed with osteosarcoma. As a cross-country runner and an avid dancer, she was devastated not only by the diagnosis itself but also by the recommendation that she undergo an above the knee amputation. For weeks, she refused to listen to any discussion by her oncologists of surgery. She was referred to a psychosocial clinician for counseling. During the first session, Sandra tearfully reflected on all the losses she had already experienced and anticipated experiencing in her life. She was concerned about how poorly her mother was handling the thought of her daughter losing her leg, not being able to run with her cross-country team or dance in competitions, as well as how much more difficult it would be to fulfill her dream of becoming a doctor. Taking risks was something Sandra had always avoided, and the surgery represented such an enormous “unknown” that just the thought of it initiated mild panic attacks. During the following 2 weeks, Sandra met with the psychosocial clinician several times a week and explored the range of intense emotions associated with her diagnosis and future surgery. The team social worker also worked closely with the family on how best to support and prepare Sandra for surgery and on how to help her to maintain healthy self-esteem afterward. In addition, the whole psychosocial team identified several goals with Sandra that were mutually agreed upon and carried out.

1. Sandra identified two activities that previously had frightened her. Together with the recreational therapist, she participated in both of these activities.

2. Sandra loved to sing. Together with a music therapist, they searched for and recorded songs that best described the anxiety that she was experiencing and how she would like to ultimately conquer her fears.

3. Sandra read short stories by peers who had also lost a limb and learned how they had adapted to their life since the amputation. A librarian worked closely with Sandra to help identify these stories.

4. Sandra was introduced by her nurse practitioner to another teenager who recently had an amputation. It took a little time before she was ready to look at the stump.

5. Sandra wrote a letter to her leg during an individual psychotherapy session.

6. Sandra met with a psychologist, and together they identified soothing images. A relaxation CD was created that included a guided imagery of all that Sandra could and would do with one leg.

7. Sandra met with a child psychiatrist who agreed with the multimodal therapies and recommended in addition the limited use of short-acting benzodiazepines for acute procedures such as scans but did not recommend additional psychotropic medication during this time.

8. Sandra met with a chaplain to discuss her spiritual concerns.

9. Sandra met with the surgeon and expressed her thoughts, wishes, questions, and fears about the amputation.

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