Psychosocial Care of the Child and Family

Presenting the Diagnosis and Plan for Treatment: Day One Talk

The diagnostic period comes to a close when the treatment team has made a clear diagnosis of the child's cancer and communicates this diagnosis and related treatment plan to the patient and family. Often referred to as the “day one talk,” this conversation with the family usually takes place in the form of a treatment conference between the family and several members of the care team, including physicians, nurses, and psychosocial care providers. The day one talk is a comprehensive discussion and usually the first to address the child's prognosis and specific treatment recommendations. For many families this meeting is a pivotal event in their lives, marking the real beginning of their child's cancer. Throughout the diagnostic phase most families maintain hope that the child does not in fact have cancer, so the day one talk is similar to other situations in which a physician must communicate bad news to the family. The literature on communicating bad news about a child's health may be relevant, and recommendations from these noncancer settings may be instructive. Box 73-1 provides a summary of essential points for communicating the diagnosis.

Although the medical details discussed will vary from one family to the next, challenges in communicating diagnostic, prognostic, and treatment information are consistent across families and can be considered and planned for. Planning is essential for a successful meeting with the family, and although there may be pressure from family or medical staff to have the conversation as soon as possible, some minimal amount of scheduling and organization will be required. A written protocol for communicating the diagnosis has been recommended, with the expectation that this protocol will be tailored to meet the needs of the patient and family. Conducting the meeting in a private space while all participants are free from interruptions is very important, as is scheduling the meeting so that the important members of the family and care team can attend. Because families typically find the day one talk overwhelming and may not remember many of the details discussed, some practitioners recommend providing written material or making a tape recording of the meeting for the parents to review subsequently. Reassuring families that they are not expected to remember all of the details discussed can reduce their sense of information overload, as will making explicit the critical pieces of information they are being asked to focus on.

In addition to the oncologists directly caring for the patient, the day one talk should include nurses and psychosocial caregivers whenever possible. The organization and roles of the medical center staff are often confusing to families, and taking time to introduce the different members of the team and describe their roles is essential. Both parents should attend, and they should be offered the opportunity to include other family members involved in the care of the child. Whether to include the child in all or part of this session or to arrange for a separate session for the child will depend largely on the age of the child and the parents' preference. Although a subsequent meeting with a smaller group consisting of parents and one or two medical professionals may be more appropriate for younger children, including adolescents in the day one talk can help them develop trust in the medical team and invest in their own care.

The principal goal of the meeting is to provide the family with an overview of the child's diagnosis, the treatment recommendations, and the prognosis. It is important to directly elicit questions the patient or family may have and to provide sufficient time to discuss their concerns. Mack and Grier emphasize the opportunity to address the family's questions about what may have caused the child's cancer and particularly to correct misconceptions that may lead to a sense of blame or responsibility for the cancer. Communicating prognostic information to the family is critical because it is likely to have an impact on their understanding of the treatment recommendations, but delivering this information can be difficult, especially when the prognosis is guarded or poor. How much to rely on a numeric presentation of this information is a question that frequently arises, and some evidence indicates that patients may misunderstand the information if it is not carefully explained. Numeric information about risk, such as 5-year survival rates, should not be avoided altogether because many families want this information, but care should be taken to ensure that parents receive the information in the way they find most useful and that they understand the information that is provided. Recommendations for treatment should be presented, beginning with a general overview of the modalities used and the timing and setting for treatments. The introduction of consent forms and discussion of known and likely adverse effects (short term and long term) should follow after the family understands the general outline of the treatment.

If a separate session for the child is held, the same general information about diagnosis, prognosis, and treatment plan should be covered. The information will need to be tailored to the developmental level and the particular concerns of the patient, such as the ability to return home and to school, to see friends, and to participate in sports or other activities. Children should be told about specific expectable adverse effects such as hair loss, with an emphasis on concrete ways in which their appearance or activities may be affected. Older children and adolescents may be able to engage directly with the medical providers, but younger children may be more comfortable talking with their parents, who can elicit their questions and reinforce what medical providers communicate to the child directly. Most professionals will emphasize the importance of the children knowing the name of their disease and that it is cancer. Parents may initially shy away from this direct approach and particular words like “cancer,” and they may need some preparation for how to talk with their child and what words to use. Understandably many parents feel protective toward their children and may wish to avoid using the words “cancer” or “leukemia.” It is important to help parents understand that honesty, even about potentially frightening information, can decrease anxiety and be supportive for children in the long term because they can grow to trust that adults are not withholding information and that they need not fear unpleasant surprises. Similarly it is important to explain that the word “cancer” is commonly used with pediatric patients and that it is important for children not to feel that their condition is so frightening it cannot be named or spoken about. It can be helpful to share with parents that the climate of open communication with young patients comes from lessons learned in past treatment eras when communication was not open, which contributed to children's anxiety and fear about their disease. With this sort of preparation, most parents can begin to feel comfortable with open communication with the child. Parents from different cultural backgrounds, or those who are unused to open discussions of illness, may not easily accept this openness and naming of the disease, and some careful negotiation and compromise may be required to reach an agreement of what words to use and topics to discuss with the patient. Over time families may become more comfortable being open with the patient themselves, while they meet other families and children whom they see are comfortable with this type of open discussion. In an elegant description of the day one talk in pediatric oncology, Mack and Grier highlight the importance of forming an alliance between the family and the medical provider and the ways in which this alliance can affect adjustment to the diagnosis. In particular they emphasize the importance of listening closely, making an emotional connection with the family, and acknowledging the overwhelming impact of the diagnosis on every aspect of the family's life. Although they provide some very specific guidelines for the information that should be discussed, they conclude, “…listening and the openness of silence may be more important than the words themselves.”

Parents' Reactions to a Child's Diagnosis

Many factors can contribute to the overwhelming nature of the cancer diagnosis. The word “cancer” continues to have a significant social stigma, as well as personal connotations. For many parents, their personal experiences with cancer may be limited to relatives who were diagnosed later in life and may not have survived long after diagnosis. Although it can be helpful to learn about these personal associations with cancer, it is very important to clearly correct parents' explicit or implicit assumptions as they apply to their child's illness. Families who have lost family members to cancer may need very explicit explanations that a parent's or grandparent's experience with prostate or lung cancer may have little in common with a child's diagnosis of cancer.

In the context of a new diagnosis, most parents will experience many intense emotional reactions and may even report psychiatric symptoms of acute stress. They are typically frightened and anxious about their child's prognosis and distraught at the thought of their child's physical suffering. If many days or weeks elapse between the child's initial symptoms and the diagnosis, parents may feel angry at medical providers, whom they believe “missed the diagnosis” or did not listen to them or to their child. Parents' belief that there was a delay in diagnosis may also contribute to feeling angry at themselves. Parents are ordinarily active agents in shaping every aspect of their child's care and well-being and may feel quite dismayed at how helpless they feel to protect their ill child. This sense of responsibility may lead many parents to feel responsible for their child's situation, perhaps blaming themselves for not bringing the child to medical attention earlier or for not understanding the significance of a child's initial symptoms. In some cases this sense of responsibility and the need to understand the cause of the child's illness may make parents (or other family members) wonder if they themselves are responsible for the cancer. Examples of these thoughts, many of which are not entirely rational, might be wondering if allowing their child to use certain electrical devices, or bringing some kind of contamination into the home from a work site, may have contributed to the cancer. For families coping with neurofibromatosis, Li-Fraumeni syndrome, or other genetic predispositions, a child's diagnosis of cancer may weigh more heavily on parents and leave them more vulnerable to psychosocial distress. The psychosocial care provider can play a crucial role in helping families reframe these difficulties, which will allow them to cope more effectively. In addition encouraging families to pursue a consultation with a genetics counselor can be an important intervention in helping families gain increased knowledge about the genetic predisposition to cancer and develop strategies to decrease stigma and fear and increase appropriate management of risk. Listening to the family in crisis and providing reassurance can be the most useful responses for all members of the care team. Normalizing parents' reactions by letting them know that parents almost universally feel overwhelmed and that intense emotional reactions are normal responses to their child's illness can help reassure them that they are not “going crazy” and they won't be judged for their reactions by the care team. One reason parents feel overwhelmed is their awareness that they are facing a more complicated, frightening, and demanding challenge than they may have ever faced before. Although it is helpful to acknowledge the feeling of facing this seemingly overwhelming challenge, it is also useful to let parents know that families do cope well, and with some assistance and support, there is every reason to believe their family will cope successfully, even though that may be difficult to imagine at the beginning of treatment.

During the crisis of diagnosis, many families will benefit from concrete structuring from the care team. Parents often need to be encouraged to focus on their own self-care and may need encouragement to mobilize their social supports to meet their acute needs, such as arranging extended time off from work or asking friends and extended family to help with other tasks. Many parents can benefit from some active problem solving, with staff helping them to identify needs, generate possible solutions, and then select and implement a potential solution. Social workers and resource specialists on the care team may be helpful in identifying sources of practical support (e.g., transportation, meals, and lodging), sorting through insurance issues, and helping solve problems with regard to meeting the needs of the patient and family.

Occasionally some parents experience such a strong need to act in the face of their child's illness that they make decisions that can be premature or even impulsive. For example some parents have quit their jobs, mortgaged their homes, or moved their residence even before knowing the details of their child's treatment and taking time to consider these major life decisions. Although parents need to decide for themselves how their family will adjust and cope with the demands of the child's illness and treatment, it is appropriate for members of the care team to caution against making impulsive decisions and support them in making short-term plans for managing the health crisis that can be revised as circumstances change or new information becomes available.

During the crisis period parents can experience a wide range of intense emotional reactions. In most cases parents' reactions can be managed with education and support from the care team. Specialized services from a psychosocial care provider, usually a psychologist or social worker, can be particularly useful in helping parents identify and begin to cope with their emotional reactions. Many of these reactions will be of short duration because parents often report feeling less overwhelmed after they have heard a definitive diagnosis and can focus on the demands of a treatment plan. Research has demonstrated that the initial psychological distress experienced by mothers at the time of diagnosis tends to steadily improve as long as 6 months after the diagnosis. In rare cases parents may have emotional reactions that are more enduring or problematic, which may require more targeted intervention during the crisis period. Situations involving confusion about the child's diagnosis or requiring a prolonged diagnostic evaluation period are more stressful for parents and may be more likely to cause significant distress. Similarly parents who are managing other significant stressors such as having a parent or other family member with medical needs and parents with preexisting psychological problems will be more likely to have symptoms that interfere with their ability to function ( Table 73-1 ). Examples of these problematic reactions might include manifesting signs of clinical depression or anxiety, not being able to care for themselves adequately (i.e., not sleeping or eating), or being so frustrated and angry that they cannot consistently collaborate with medical providers. In these situations in which parents' reactions will have a negative impact on the child and have the potential to interfere with the treatment process, it is important to address the situation directly with the parents and make appropriate referrals for intervention.

Interventions for parents experiencing these problematic reactions may require more intensive services from some members of the care team, as well as consultation with and referral to other individuals. The underlying problems may predate the child's cancer, but the focus of intervention during the crisis of diagnosis may appropriately be alleviation of symptoms. Parents showing signs of severe distress should be evaluated by an appropriate psychosocial team member or be referred to a mental health provider who can assess their psychological status and refer them for any urgent intervention they may need. In addition to supportive therapy and the problem-solving approaches previously described, psychopharmacologic intervention may be particularly helpful for parents who have severe anxiety or depressive reactions, severe sleep disturbance, or a preexisting psychopathologic diagnosis. Pastoral counseling may be useful for parents whose faith is an important source of support and for those experiencing a “crisis of faith” as they struggle to make meaning of their child's illness.

Children's Reactions to Diagnosis

Children will react to their diagnosis and initial treatment on the basis of their developmental level, their own individual temperament and past experiences, and to a large degree on how their parents cope with the new diagnosis and treatment. Typically the infant, toddler, and especially the preschooler will be more concerned about changes in routine and the normal home environment, separation from family, especially the primary caregiver, and bodily intrusion through physical examinations and medical procedures for diagnostic or treatment purposes. Strange environments will disrupt normal awake/sleep patterns, and sleep deprivation can reduce the child's normal self-regulation effectiveness. For example infants who had been able to sleep through the night at home might have constant awakenings. Separation from the primary caregiver(s) then becomes an even larger issue if the parent is not present during the night or during bodily intrusion episodes to help comfort the child. Clearly this need for the parents suggests that, when possible, it is better for parents to create “shifts” to be with the child as much as possible, day and night. Such parental support also means that the issue of support for parents, both emotionally and in practical ways, needs to be addressed. Stressed parents who cope poorly will not be able to help their child self-soothe well.

One issue that the medical team can address is the manner in which examinations and procedures are carried out. For example Chen and colleagues found that children had memories of stressful and painful procedures that affected their experience and behaviors during subsequent procedures. Asking the parent to leave the room while a team of doctors and nurses in white coats enter the child's room to carry out examinations is more likely to help create an uncooperative child who will become conditioned to be anxious around anyone with a white coat. Having one member of the team develop a relationship with the child, from toddlerhood through adolescence, will be helpful in establishing the child's trust of the nonfamily “team.” Establishing a system for families in the hospital that sets clear guidelines for providers as they enter a child's room can prevent significant distress. For example psychosocial providers or child life specialists can create a sign for the door that reminds providers to introduce themselves when they enter the room, let the child know up front what is going to be required of them, and hold medical discussion outside the room when appropriate. Respecting such requests fosters rapport, reiterates the message that the child and family are part of the team, and promotes the sense of being “heard” by the medical team.

For the very young child, procedures that can be performed competently and quickly while distracters are present (e.g., iPad apps, bubbles, party blowers, cartoons, and stories) can reduce fear of future procedures and help the child develop a sense of control and cooperation. The use of positive reinforcement is helpful in an effort to pair “scary” novel and intrusive experiences with positive, pleasurable experiences. The use of behavioral strategies (e.g., breathing, relaxation, imagery, and behavioral charts) can provide parents with ways to support their child in these novel and intrusive situations and help the child develop a sense of security and mastery, and they give parents the opportunity to feel successful in the context of challenging medical demands. Additionally it may be useful to encourage the family to bring in a “transitional object” for their child (e.g., a favorite blanket or stuffed animal) to bring the familiarity of “home” into the hospital.

School-aged children will be interested in concrete answers to their questions about hospitalization, expectations with regard to medical examinations, and specifics about what to expect in unfamiliar situations. Encouraging parents to answer questions directly, even when the topics may be uncomfortable, will foster open communication and minimize the chance that the child will create “answers” based on faulty assumptions that can be anxiety provoking. Parents should be reminded that this is not a one-time discussion and that providing their child with information, even upsetting information, can decrease uncertainty about the illness and potentially improve psychological functioning.

While children develop an increased understanding of their illness, they may ask, “Am I going to die?” Psychosocial providers can help guide parents in providing answers to this question based on a child's age and diagnosis. It is important for parents to acknowledge the severity of the disease while highlighting the fact that the medical team has a treatment for the illness. Answers to this question will vary based on a child's medical condition, particularly in the case of relapse. Exploring a child's thoughts and fears around illness and death can be helpful; however, providing reassurance that he or she will be well taken care of and not left alone and that his or her symptoms will be treated is critical.

Adolescents are likely to want to know more information about their illness and treatment. Simple responses to questions often will not satisfy them, and parents will need to understand that adolescents may potentially turn to alternative sources beyond their parents for important information. A child or adolescent who has formed a relationship with a member of the treating team can ask questions of that team member that might seem difficult to ask parents. Some adolescents feel a need to “protect” their parents from more stress by not acknowledging to their parents their own fears, anger, and worries. Encouraging adolescents to talk about what they have learned from their medical providers, the Internet, and their peers will help eliminate misinformation and confusion while empowering adolescents to seek information in their own way. Developing a sense of mastery over the medical information can lead to a feeling of control and confidence that can be helpful for teenagers.

Finally, children of all ages often regress when they are scared, and parents need to know that changes in the child's behavior are not unusual. Psychosocial providers can normalize behavioral reactions for parents and subsequently minimize the distress associated with particular behaviors. For instance a preschooler who has just been toilet trained may begin having accidents, and it is imperative that parents recognize that this behavior is a normal response to a stressor and that they should not focus too heavily on that behavior during a time of crisis. The following guidelines are related to children's reactions to diagnosis and treatment:

• Many parents need help talking with their child, who is often scared and needs some explanation and education along with his or her parents.

• A variety of disciplines, such as child life, nursing, social work, and psychology, can all be helpful to parents, siblings, and pediatric patients. Interventions relating to preparation for medical procedures, supportive work with parents and other family members, and psychoeducation are important. Connections with other children and families who are having similar experiences can be helpful.

• Keys to getting through diagnostic procedures are good preparation and good pharmacologic and psychological pain and anxiety management.

Education and Information about Treatment

Most treatment regimens put an enormous information burden on the family. Children are often treated with several modalities (such as surgery, radiation, and/or chemotherapy) and may receive a large number of medications, as well as a variety of blood tests and other diagnostic procedures. Although adolescents may be active in their own care to some extent, parents are responsible for understanding and managing their child's treatment, especially during outpatient phases of treatment when parents will need to work with home care agencies, administer treatments themselves, and monitor their child's health. To meet these demands, parents require detailed information about their child's treatment regimen and reactions that can be expected. Most of this detailed information will be provided by nursing and medical care providers. Patients and families are generally quite resilient and successfully accommodate even the most demanding treatment regimens, but initial apprehension about being able to understand and implement these regimens is common. Staff may need to present information several times and reinforce verbal exchanges with written materials. While remaining optimistic and encouraging families to develop competence, it is also important for providers to recognize the complexity of what they are asking of families and the burden it imposes. Normalizing the common feelings of anxiety and “information overload” while focusing on problem solving in the face of new demands is an important role for the psychosocial clinician. Talking with other families who are undergoing similar treatment can be particularly helpful, and many centers offer education and support groups for new patients and families. In addition a wide variety of books useful to parents and helpful for patients and siblings may be available from hospitals, libraries, and booksellers.

Among older children and adolescents, interest in or openness to learning more about their illness and treatment can be highly variable. Because they have more developed cognitive and language abilities than younger children, older children can ask more questions and understand more about their treatment, and like parents, they may receive educational information from nursing staff as previously described. To the extent of their capabilities, adolescents should be encouraged to participate in their own treatment by learning about their medications and schedule, helping with simple self-care activities such as routine care for a central venous line (CVL), and learning the best ways for them to cope with adverse effects or medical procedures. In some cases adolescents may not be interested in some of this information or may feel disinclined to assume even basic self-care responsibilities. It is not uncommon for adolescents to feel overwhelmed by information about their disease, particularly given the typical developmental milestones they are attempting to navigate. Feelings of distress associated with a loss of autonomy may lead adolescent patients to become more withdrawn. It can be helpful to empathize with adolescents' plight of feeling “pushed around” while actively working with them to develop adaptive coping strategies that may lessen their feelings of helplessness. It is often important to point out that although many aspects of the situation cannot be changed (i.e., you have cancer, you need treatment, and the treatment will cause you to miss school), some aspects can be changed (e.g., you can maintain ties with friends through texting, social media, or visits, you can keep up with school work, and you can plan a party or an outing to celebrate an upcoming treatment milestone). It can be overwhelming for parents to include adolescents in difficult conversations about their illness and treatment, but adopting a model of shared decision making with adolescent patients in the early stages of treatment can empower patients, improve comprehension and understanding of the treatment plan and toxicities, and enhance communication among parents, patients, and providers.

Psychosocial Assessment of the Patient and Family

Experienced psychosocial care providers generally have a way of conducting an assessment that is comfortable for them and generates the relevant information. For illustrative purposes, a general approach to the assessment interview will be outlined here and in Box 73-2 . The process of the interview should include time for the family members to speak about their concerns, but the provider will need to actively direct the conversation to ensure that the necessary topics are covered. In an interview with both parents if possible, the provider may begin by asking about the general family history and then focus on the patient's premorbid functioning, a developmental history, and the relevant history of any other children. Details of the patient's functioning at school and relationships with peers and siblings should be solicited, as well as prior experience with stressful situations and any behavioral, developmental, or emotional concerns prior to the cancer diagnosis. In learning more about the parents, it is useful to know the basic outline of their families of origin, their current work or family roles, and any religious and cultural traditions that may affect their ability to cope with the illness. It is important to know if the family has had to cope with significant stressors in the past and if any other significant problems exist in the family at present. If the parents are divorced or not married, understanding this history, as well as the practical and legal aspects of any custody arrangements, is critical. Understanding the family's practical and social resources is also an important component of the assessment.