Psychosocial factors impacting children with cancer and their families

Time of diagnosis

A diagnosis of childhood cancer is an acute traumatic event for a family. Many families recall the conversation confirming diagnosis as a turning point in their lives. This can occur unexpectedly or after months of unexplained symptoms. Preconceptions or past experiences with cancer may lead to immediate thoughts that the child will die. Even if fears about death are not at the forefront, thoughts about a long, painful, and invasive treatment course could be overwhelming. The events surrounding diagnosis, and the way in which the diagnosis of cancer is presented, significantly influence the family’s initial reactions and set the stage for collaboration with the medical team. Table 34.1 offers guidance and suggestions for the initial diagnosis meeting with the family. The family’s reactions will determine the pace and flow of the conversation. Table 34.2 provides common reactions and suggestions for working with pediatric patients at different developmental levels at the time of diagnosis and throughout cancer care. Table 34.3 provides common parental reactions and suggestions for psychosocial intervention throughout the care of the patient. Despite knowing that cancer was a possibility prior to the family meeting, most family members reported feeling shocked at the news confirming diagnosis. Parents perceive their role as providing for their children and protecting them from fear, hurt, pain, and death. The diagnosis of cancer threatens that identity and sense of adequacy as a parent. Many family members report an inability to hear or comprehend any information from this first meeting beyond the naming of the diagnosis, being lost in their own thoughts and emotions.

Table 34.1

Preparing for a diagnosis talk with the family.

Setting	Arrange meeting as quickly as possible after diagnosis is confirmed Prepare family for the purpose of meeting and to invite all relevant and supportive parties Held in a private place, minimize interruptions, provide enough chairs for all attendees
Who should attend	Parents/caregivers of patient (make sure all caregivers are invited) Adolescent and young adult patients (minors can also be invited to attend, if appropriate) A member of the treatment facility’s mental health team (psychologist, child life specialist, or social worker) Any other members of the treatment team who have developed a trusted, supportive relationship with the family (such as a nurse)
Style of communication and content	Empathic, unequivocal approach Tailored to cultural and educational characteristics of family, patient, and situation Accurate, clear, specific, and brief without the use of jargon or euphemisms Minimize discussion of detailed biological processes, statistics, or in-depth medical terminology Presentation of verbal information and make written handouts/summaries available for review following discussion Speak slowly to allow for notetaking and comprehension Anticipate strong emotional reactions Offer support and validation of concerns and feelings
Postmeeting suggestions	Parents may benefit from meeting with members of psychosocial team to discuss effective and developmentally appropriate ways to discuss the diagnosis with the patient and siblings Reinforce competence of parents while empowering them to guide and support their child through this medical crisis Anticipate need for repetition of information discussed and assess for understanding Check-in with parents about confusion, points of clarification, and questions
Suggestions for diagnosis meeting with patient (held with parents and treatment team)	Discussion of diagnosis and treatment in a developmentally appropriate way Speak openly and honestly about cancer and treatment to reduce anxiety and maintain sense of security in parent–child relationship and increase trust in medical team Provide clear and concrete information Use the word “cancer,” and specific name of the diagnosis to demystify the terminology, prevent misinformation heard from others, and mitigate concerns that information has been hidden from patient Use repetition to ensure understanding Focus on the most relevant information for the child; how things will be altered or changed for them as a function of treatment (e.g., routine, activities, and physical well-being appearance) Conversation should not be rushed; allow ample time for questions and address all concerns and questions honestly and gently

Table 34.2

Reactions to cancer by developmental level and suggestions for psychosocial support.

Developmental stage	Common reactions	Suggestions for psychosocial support
Infants and toddlers (0–3 years old)	Issues related to attachment and trust that contribute to difficulty coping with physical and emotional impact of diagnosis and treatment (separation, pain, unfamiliar people and situations, interrupted routines) Potential delays in growth and development	Focus on the parents to support adjustment and adaptive coping of the child through reestablishing routine, consistency, and structure (e.g., feeding, baths, and bedtime) Reinforce the essential role of parents as an expert on their child, a partner with the treatment team, and facilitate continued bonding with the infant Create opportunities for continued growth and the development of milestones through encouragement of parent and support of occupational and physical therapy Support during procedures through soothing via pacifier, maternal nursing, gentle rubbing of face or back, playing or singing relaxing music, utilizing comfort items (favorite toy, blanket, stuffed animal) or distraction (bubbles, rattles, and light up toys)
Preschoolers (3–5 years old)	Fears regarding unfamiliarity with hospital, medical personnel, changes in routine, potential separation from parents and siblings Regression (i.e., loss of developmental milestones or return to previously discarded behavior) Slow-down in meeting new developmental milestones Heightened dependence on parent (e.g., wanting to sleep with parents) Fears of abandonment Perceive treatment (e.g., painful procedures) and physical discomfort associated with diagnosis as punishment or retribution for wrongdoing Sleep disturbance (e.g., refusal to go to bed, fitful sleep, nightmares)	Address concerns by giving a brief, honest, and consistent explanation Acknowledge that they did not cause their condition nor is it punishment for wrongdoing Provide consistent verbal acknowledgment/praise for cooperation with procedures and encourage gentle and positively focused discipline when needed Utilize behavior plans to target certain behaviors more effectively Teach breathing exercises and developmentally appropriate distraction techniques during procedures (e.g., storytelling/reading books, fantasy play, singing, and interactive toys) Engage child life specialist in preparing the child for, and supporting the child and parents through, procedures The child should be allowed to engage in medical play and become familiar with hospital space (e.g., visit operating and recovery rooms if undergoing surgery) Developmentally appropriate toys and activities should be provided throughout inpatient stays and outpatient visits as young children benefit greatly from free play
School age (6–12 years old)	Reaction to diagnosis may be delayed or immediate and anxiety-ridden Many children exhibit adaptive and efficient coping styles Younger children can display any or all reactions listed for preschoolers Concrete thinking with a focus on the relationship between cause and effect resulting in questions around diagnosis such as, “Why me?” and complaints, “It’s not fair!” Potential for: Psychosomatic complaints, nightmares, stoic-like acceptance, labile emotions Sadness, fear, worries of being different from peers due to physical changes and school absences Lowered self-esteem and confidence levels Degree of interest in participating in treatment and decision-making discussions will vary	School-age children may be curious to learn about various aspects of their illness and treatment at a developmentally appropriate level Provide concrete explanations of what they can anticipate (disrupted routines, change in appearance, hospital visits, medication) Teach stress management techniques aimed at developing self-regulating skills through breathing, imagery, and distraction (by reading and playing with toys or games) The physician can develop a strong positive working relationship with school-age children by taking time to sit and answer questions Inform the child that their emotional responses are common and acceptable Provide space to explore individual experiences through verbal and creative expression Refusal to cooperate with treatments or restrictions should be met with consistent and lovingly applied discipline balanced with praise and positive reinforcement when compliant Maintaining friendships, continuing academic progress, school reentry, and other issues should be actively addressed Team should determine with parents and child to what extent child should be actively engaged in treatment discussions versus receive a developmentally appropriate version of conversations separately from parents
Adolescents (13–19 years old)	Many adolescents exhibit adaptive and efficient coping styles Initial questions may be general (e.g., geared toward causation and prevention of disease) or more personal (e.g., individual treatment plan; disruption to social life) Potential for: Loss of independence, which can threaten their developing autonomy Nonadherence (as an attempt to regain a sense of control) Feeling self-conscious about appearance and emerging sexuality (e.g., hair loss, treatment-related delays in puberty, scars, weight gain or loss) Fear of being different can interfere with school/social scene reentry and lead to avoidance of intimate relationships with peers Shifting long-term career and family plans and expectations Concerns about fertility Feelings of isolation can lead to social withdrawal, hesitancy, and sadness Susceptibility to the perceived wishes and expectations of others, aiming to be a “good patient” Evidence of clinically significant symptoms of anxiety, depression, and posttraumatic stress in approximately one-third of AYA undergoing active treatment or within 2 years of achieving remission of acute leukemia, non-Hodgkin lymphoma, or Hodgkin lymphoma	Allow and encourage participation in medical decisions and provide choices about their role in treatment planning discussions (e.g., signing consents/assents when appropriate, allow control with scheduling, permit them to see tests, involve them in discussions of alternative treatments) Carefully assess for intention to reduce burden on others and desire to be “good patient” or “good child” and minimizing reports of distress or discomfort Offer group support and individual counseling by psychosocial staff whenever possible Family therapy may be appropriate to address issues of autonomy Encourage patient to maintain participation in daily activities Ensure that academic program is appropriate to help adolescent reach their long-term life goals Teach skills for stress reduction, such as breathing, imagery, and relaxation training Other effective coping strategies: problem-solving, creating cope-ahead plans of how to handle difficult situations When possible, arrange schedule to allow participation in major life/social events and milestones (e.g., prom, graduation service)
Young adulthood (19–39 years old)	Increased capacity for abstraction and critical-thinking Broader worldview and more solidified identity Similar emotional responses as adolescents with increased attention to impact of illness on others in their lives and balancing age-related and societal expectations with own values and identity Potential for: Increased financial burden and responsibilities of independent adult living (relationships, dependents, career/work) Feelings of isolation Concerns regarding fertility Treatment adherence issues Engagement in risky behaviors	Empower patient to actively engage in medical treatment and decision-making while also seeking the support of family and significant others Encourage continued commitment to daily routines and structure Problem-solve and discuss realistic options related to school and/or career maintenance and ambitions Connect patient and family to organizational support for any financial needs Offer psychotherapy when feasible and focus on integration of cancer diagnosis and treatment into developing identity and autonomy

Table 34.3

Parental reactions to cancer and suggestions for psychosocial support.

Treatment stage	Common reactions	Suggestions for psychosocial support
Diagnosis and initial treatment	A variety of significant reactions, including disbelief, denial, confusion, fear, guilt, self-blame, grief, sadness, anger, anxiety, and helplessness. Anger can be directed at the treatment team and behavior may demonstrate a desire to regain control over situation. It is common to feel overwhelmed with new medical terminology and information and the need to make rapid treatment decisions. May experience frequent crying, difficulty sleeping, intrusive thoughts, and/or continued sense of stress. Often seek reassurance that their child “will survive” and questioning why this happened. Parents may engage in a review of transgressions for which they are being punished or experience guilt over their inability to anticipate that their child was sick.	Be factual and empathic. Allow time for questions and answers. Educate family on common reactions and feelings. Support parents in their request for time to talk with other family members and to seek a second opinion. Advise against talking to unreliable sources and those who promote unrealistic hope or provide inaccurate information. Be sensitive to cultural beliefs and norms. Repeat information with compassion as parents/caregivers will need to review information in order to integrate it. Reinforce that they did not cause the cancer. Prepare parents for possible delay in emotional reaction [in themselves or their child(ren)]. Help promote open communication in the family. Encourage parents to have their child, particularly adolescents, participate in medical decisions (e.g., signing consents; when appropriate, control with scheduling, permit them to see tests). Address logistical issues such as taking leave from job, childcare for siblings, financial issues, etc. With parent’s permission, develop relationship with patient’s school and begin to develop new academic plan with regard to home/hospital instruction, attendance at school, grade promotion versus retention, assessment for special services, etc.
Remission	Fear of relapse is common, often parental anxiety increases in phases of less intensive treatment/end of treatment. Financial strains may become a key issue. Exhaustion as parents try to return to work and family activities while caring for the patient with cancer. May become concerned about strain on relationships with other children, spouse/partner, etc. as the early crisis phase of treatment required their full attention. Can become more lax in following through with medical appointments and medication schedule.	Monitor family communication and coping. Encourage parents to maintain active participation in healthy daily activities. Educate regarding typical emotional shifts. Teach stress reduction such as breathing, imagery, and relaxation training. Refer for psychosocial support services for individual and family and organizational support with regard to financial needs. Family therapy may be appropriate to address communication, behavior, or relationship issues. Suggest parents monitor adherence with treatment regimen and medication.
Recurrence	Fear, anxiety, sadness, tearfulness, anger, difficulty sleeping. An urgent need to explore all treatment options. Concerns about how to best communicate information to the child with cancer and/or siblings.	Monitor symptoms and offer counseling, particularly when symptoms interfere with ability to cope. Discuss treatment options openly and support family in obtaining second opinion as desired. Assess family communication. Encourage parents to include their child in medical decisions and, when appropriate, including end-of-life decisions as needed. Balance additional treatment with quality of life. When indicated, shift focus from “cure” to symptom control/palliative care. Refer for hospice services when end-of-life discussions begin. Provide clear information in preparing parents for what to expect during end-of-life period. Encourage siblings to attend family conferences. Assist family in examining what is meaningful about the patient’s goals in general terms (e.g., “go away to college” might be reframed as “I want to travel and learn”) and identifying ways to continue to provide opportunities for growth and development rather than focus on activities/events/specific goals that may not be realistic and, therefore, experienced as a “failure.” Offer psychosocial support to all family members and particularly during the last month of a patient’s life.
Bereavement	Most families wish to maintain a relationship with the primary oncology team. Loss of a child is a significant risk factor for developing complicated grief. In addition to the expected grief reactions, parents may mourn the loss of their identity as a caregiver. Families appreciate the opportunity to keep their child’s memory alive by sharing experiences with those who knew their child during his/her illness. Many families choose to facilitate donations to treatment/research/support organizations or start a charity in their child’s memory.	Express condolences through a personal note or conversation with the family. Staff members that attend service/funeral can represent entire team. Share personal and staff memories of the child. Provide selected reading materials about bereavement to parents, siblings, grandparents, and extended family members, classroom teachers, and others who knew the child well. Be aware of differences between expected grief reactions and those that are prolonged and require counseling. Offer information on how to connect with other families who have lost a child, if the family desires. Support family’s efforts to give back to the community.
Survivorship	Sense of relief along with ambivalence and fear of recurrence. Anxiety about decreased contact with medical team and potential for emergence of posttraumatic stress symptoms.	Normalize emotional responses to end of treatment. Address realistic expectations regarding a quick “return to normal.” Monitor family adjustment. Assess for psychological distress and offer psychological services when indicated. Have follow-up care arranged and provide education on potential late effects of cancer treatment.

It is important to recognize the impact on and reactions of extended members of the family as well (including siblings, grandparents, and other relatives). Extended family can not only serve as a network of support for the parents but also create undue stress and a sense of responsibility for disseminating information. Encouraging parents to assign a family representative or conduit for sharing information can reduce pressure on the parents. While the circumstances surrounding each family experience is unique, several key factors have been empirically identified to create the standards for the psychosocial care of children with cancer and their families in order to systematically address the complex issues faced by this population. Table 34.4 outlines these standards.

Table 34.4

Standards for the psychosocial care of children with cancer and their families.

Adapted from Wiener, L., Kazak, A.E., Noll, R.B., Patenaude, A.F., Kupst, M.J., 2015. Standards for the psychosocial care of children with cancer and their families: an introduction to the special issue. Pediatr. Blood Cancer 62 (Suppl 5), S419–S424.

1.
Psychosocial assessment as a standard of care in pediatric cancer
2.
Monitoring and assessment of neuropsychological outcomes as a standard of care in pediatric oncology
3.
Psychosocial follow-up in survivorship as a standard of care in pediatric oncology
4.
Psychosocial interventions and therapeutic support as a standard of care in pediatric oncology
5.
Assessment of financial burden as a standard of care in pediatric oncology
6.
Standards of psychosocial care for parents of children with cancer
7.
Anticipatory guidance and psychoeducation as a standard of care in pediatric oncology
8.
Procedural preparation and support as a standard of care in pediatric oncology
9.
Providing children and adolescents opportunities for social interaction as a standard of care in pediatric oncology
10.
Supporting siblings as a standard of care in pediatric oncology
11.
Academic continuity and school reentry support as a standard of care in pediatric oncology
12.
Assessing medication adherence as a standard of care in pediatric oncology
13.
Palliative care as a standard of care in pediatric oncology
14.
Bereavement follow-up after the death of a child as a standard of care in pediatric oncology
15.
Communication, documentation, and training standards in pediatric psychosocial oncology

Treatment decisions need to be made quickly after the diagnosis is known. This requires the family to absorb and understand significant amounts of medical information, including weighing the risks and benefits of treatment research protocols. Families may want time to seek other medical opinions, consult with additional family members and friends, and conduct their own searches for information. Some families may have preconceptions about chemotherapy as toxic or even more harmful than the disease itself and others might advocate for nonstandardized and primarily alternative methods of treatment. Providers must be sensitive to the belief systems of families while offering support through reinforcing what is known in regard to the diagnosis and the evidence-based treatment options. It is essential to build a partnership through rapport and the encouragement of family participation in the conversation, and attend to the family’s level of distress, while gently encouraging their competence and ability to make a good decision. In rare cases, providers may have to enlist the support of legal agencies and child protective services to guide decision-making. Illness uncertainty related to perceived ambiguity, unpredictability, or insufficient information about disease has been linked to symptoms of anxiety, depression, and posttraumatic stress among parents. It is important to continue to monitor the family’s comprehension of information through multiple conversations where consistent information is shared and with a particular sensitivity to varying levels of health-care literacy that greatly influences processing and decision-making. Asking of questions and expression of concerns is indicative of effective coping and adaptation to the reality of their child’s condition.

Psychological problems and/or developmental differences in the patient or any family member add significantly to the burden of dealing with cancer and can exhaust a family’s time and emotional and financial resources. An assessment of the family’s strengths and vulnerabilities, psychosocial resources, and preexisting problems can help the team anticipate the psychological adjustment and provide appropriate psychosocial care. The following have been associated with poorer psychosocial outcomes and may warrant an early referral for psychological treatment for a family:

Limited social support
Financial instability
Maladaptive communication styles (closed communication, avoidance of discussing feelings)
Parental distress and inadequate parenting skills
History of mental health issues

Identification of family and parent functioning as well as early detection of issues are critical given the direct relationship between parent psychosocial adjustment and child quality of life and coping. Other families seek psychological services as a “preventative” measure for their children, in order to have additional support and to help guide them as parents in this arena. Several models of screening risks among pediatric families have been developed, including the Pediatric Psychosocial Preventative Health Model (PPPHM), the Family Adaptability, Partnership, Growth, Affection, and Resolve (Family APGAR), and the Home environment, Education and employment, Eating, Activities, Drugs, Sexuality, Suicide/depression, and Safety (HEEADSSS) approaches. Standardized measures of psychosocial stress such as he Distress Thermometer (DT), the Psychosocial Assessment Tool (PAT), and the Pediatric Quality of Life Inventory (PedsQL) are used in conjunction with these approaches to objectively measure risk factors and recommend interventions.

Treatment initiation

Adjustment of parents and family

The initiation of medical treatment often provides a sense of relief to families because the fight against cancer has begun. While it is reassuring that something is actively being done to help the child, tremendous burdens are placed on the family during this time. Daily lives are disrupted due to the demands of treatment, roles, and responsibilities within the family need to be renegotiated to ensure that the basic needs of the family continue to be met (e.g., working to retain medical insurance and pay bills, caring for siblings), and highly technical medical information needs to be understood. Parents are in the position of consenting to treatment which is likely to be invasive, painful, and can create short-term and/or long-term side effects. While the ultimate goal is to restore the child’s health and allow them to enjoy a long and productive life, many parents grapple with a deep sense of guilt for “subjecting” their child to treatment. This can be especially painful when a young child clings to a parent and pleads, “Don’t let them hurt me!” Parents frequently report that the primary difficulty during treatment initiation is dealing with their own intense emotions. Within the first weeks following initiation of treatment, nearly all parents report clinically significant psychological distress in the form of anxiety, depression, or traumatic stress reactions. This distress can make it difficult for parents to establish consistently effective working relationships and open lines of communication with the medical team.

Furthermore, parental–marital relationships are often challenged as the stress can exacerbate previous marital problems, disrupt comfortable patterns of relating, or bring to light differences in beliefs and coping styles that make working together as a parenting team difficult. Parents who are separated or divorced, or whose relationship is already strained, face larger complications in being able to enter into treatment as a team. Conflicts in the marital relationship related to adjustment to diagnosis have also been correlated with increased parent–child conflict. Regardless of marital status, some parents report feeling alone in their experience of caring for their child (the “lone parent”) which contributes to feelings of inadequacy in meeting the basic and emotional needs of their child. Parents who have open communication with one another and are mutually supportive and trusting in their relationship can typically surmount these challenges but some may require professional support.

Similar to the pediatric patient, the lives of their siblings are significantly impacted from the time of diagnosis. While siblings typically adapt effectively over time, a subset of siblings will experience emotional and behavioral difficulties. Siblings are often unable to spend significant time at the hospital with the patient, which can result in uncertainty and anxiety associated with the unknowns of their siblings’ health status as well as feelings of isolation and exclusion. Compared to their peers, siblings have demonstrated poorer academic performance and increased absenteeism, cancer-related posttraumatic stress, and reduced quality of life. Older siblings can also find themselves with increased responsibility in their homes as substitute caretakers. Adult siblings have also demonstrated increased vulnerability to engaging in risky health behaviors (e.g., substance use), worse health outcomes (e.g., obesity), and depressive symptoms. Identified as a psychosocially at-risk population, siblings should be assessed and provided with supportive interventions beginning at the time of diagnosis. Siblings who serve as hematopoietic stem cell donors warrant special consideration involving appropriate assenting or consenting procedures without feeling forced into a choice (donor advocacy), and the psychological impact of both successful and unsuccessful transplants.

Interventions to promote adaptation

In addition to open communication with parents, providing a roadmap of treatment can help the family focus on what needs to be done and provide some sense of relief, optimism, and increased predictability about treatment course. Providing psychoeducation and guidance related to what the patient and family can anticipate from the diagnosis and treatment (including, side effects, hospitalization, procedures, and psychosocial concerns) has been demonstrated to improve a sense of control and reduce anxiety. The impact of the uncertainty related to the disease and treatment trajectory can be overwhelming for families and having these concrete discussions as well as opportunities to openly talk through the “what ifs” and validate their worries (i.e., “what if treatment is not effective?,” “what if the cancer returns?”) can be immensely validating. As the family comes to trust and rely on the medical team, it is also important for the physician and other members of the team to be clear about their roles and involvement in the child’s care throughout the planned treatment course.

As treatment begins for the patient, anticipation and endurance of repeated painful procedures and physical side effects of treatment are some of the most distressing and traumatizing aspects of the cancer experience. To help the patient through this difficult aspect of treatment, members of the team should explain procedures in developmentally appropriate terms, minimize the degree to which procedures are painful, and effectively manage common physical side effects, such as chemotherapy-induced nausea and vomiting. Interventions that combine aspects of cognitive behavioral therapy (CBT) and basic behavioral strategies (e.g., preparation, desensitization, modeling, and positive reinforcement) as well as hypnosis, use of virtual reality, and biofeedback can be provided by psychosocial specialists to decrease procedural distress. Parents can also learn to effectively use these techniques to help their children cope with procedures, boosting their self-efficacy as parents and allowing them to feel less helpless during treatment. Parents may require support related to witnessing procedures that are perceived to be painful or anxiety-provoking. Higher levels of distress in parents related to lumbar punctures and bone marrow aspirations have been linked to increased distress in their children surrounding these procedures. Other CBT strategies (including emotion identification and expression, identifying automatic and distorted thoughts that maintain psychological distress, development of coping skills, self-regulation skills, and improvement of communication and assertiveness skills) and play-based psychotherapy have been effective in promoting adjustment and reducing emotional distress for pediatric oncology patients throughout treatment. Mindfulness-based interventions can be helpful in managing the ambiguity and uncertainty related to treatment trajectory, side effects, and outcomes. Acceptance and commitment therapy, with a focus on acceptance and awareness of the present moment while working to live consistently with one’s values, and trauma-focused CBT, which targets potential posttraumatic stress symptoms associated with aspects of medical treatment, have also been integrated into pediatric oncology. Support groups for patients and parents, family therapy, or a combination of these various approaches can also be effective.

Illness stabilization

Parental distress present throughout the early stages of the illness and treatment starts to dissipate with illness stabilization. Some anxiously await the day their child is well enough to return home, especially if the initial hospitalization is long. Others find the return to home particularly stressful because they no longer have the constant monitoring and expertise of the hospital staff. As treatment progresses and remission is established, most families develop ways of coping effectively with the cancer and its treatment, which some have described as “coming to terms” with the cancer routine. Distress decreases over time with few parents reporting clinically significant levels of anxiety and depression by 1–2 years postdiagnosis.

Still, there are moments of increased anxiety that surround particularly stressful cancer-related events (e.g., emergency room visits, severe side effects, follow-up scans, and tests), and symptoms of cancer-related traumatic stress (e.g., intrusive thoughts about cancer, hypervigilance, and physiological arousal). This distress is expected. Parents continue to struggle to make sense of the diagnosis and experience grief and mourning related to the loss of their child’s health and prior lifestyle. Maladaptive coping can manifest as excessive concern about relapse and death, refusal to allow the patient to return to everyday activities, difficulties regularly attending scheduled hospital/medical visits, or persistent and/or escalating anxiety or depression.

Regarding the patient, one of the most common concerns as treatment progresses is depression. Children with cancer, particularly adolescents, may display increased sleep, loss of interest in activities, and social withdrawal among other symptoms that are consistent with depressed mood. Most research, however, reveals that children with cancer do not evidence greater rates of ongoing clinical depression, especially if their psychological needs are tended to during the cancer treatment. When assessing for depression, an emphasis should be placed on the cognitive factors (anhedonia, helplessness, guilt, reduced self-esteem/self-worth, and feeling burdensome to others) rather than the physiological and behavioral indicators that can mirror side effects of oncology treatment (changes in sleep, appetite, energy level, and concentration).

One of the major tasks for the patient and family during the illness stabilization phase of cancer treatment is to reestablish the patterns and routines of daily life that were disrupted due to diagnosis and initiation of treatment. A new routine needs to be established that encompasses both the needs of the ill child as well as those of the well siblings and the adults in the family. Parents should be encouraged to take some time to recharge themselves and their relationships and be cautioned against becoming overprotective or overindulgent with their children. Families of younger children should reestablish expectations and rules regarding bedtime, feeding, naps, and playtime. Families of older children need to reestablish their child’s roles and responsibilities within the family, peer relationships, and school activities to the greatest extent possible. The maintenance of friendships and some level of independence from the family are important for the child, and especially the adolescent, with cancer and can prevent social deficits posttreatment.

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