Abstract
Over the past decade research on coping in pediatric cancer has continued to highlight both the range of factors affecting individual responses and the persisting need for good clinical evaluation and intervention to support optimal functioning. Coping is a fluid process that is a transaction between the person and the environment – affected by one’s age, personality, experiences, and situational demands. Coping in the context of cancer requires acknowledging the threat cancer poses and the demands of cancer treatment while at the same time managing emotional reactions and maintaining essential aspects of the child’s or family member’s identity and role in the family and community. Sensitive, experienced clinicians can distinguish reactions indicative of poor coping and unstable emotional status from the appropriate and expected expression of “clinically relevant distress.” Recent research has highlighted both the potential traumatic sequelae of pediatric cancer and the impressive resilience shown by many patients and families. Improved assessment options and interventions aimed at fostering parent and patient skills in mastering troubling demands of pediatric cancer care offer hope, but the field has room for future research into how to more fully meet the ongoing need for enhanced coping to reduce patient and family distress during pediatric cancer care.
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Keywords
- Coping Strategy
- Pediatric Cancer
- Cancer Experience
- Cognitive Reappraisal
- Patient Report Outcome Measurement Information System
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.
Introduction
Ten years ago, we reviewed and summarized the literature on psychosocial aspects of pediatric cancer (Patenaude and Kupst 2005), highlighting the considerable progress made over the previous 30 years, along with the advances in cancer treatment and improved survivorship. We described the transformation in approach from keeping children in the dark about the nature of their disease and their prognosis to what is now basically taken for granted, i.e., more open communication and involvement of children and adolescents in their treatment and decision-making. The family became the unit of care. Results of behavioral studies provided interventions to help children and adolescents with procedural distress and anxiety. With the ability to conduct longitudinal studies, additional information emerged about the potential late effects that survivors faced and the need for more attention to their psychosocial and neurocognitive needs.
Overall, studies indicated that, despite the intense stresses connected with pediatric diagnosis and treatment, most children, adolescents, and their families were able to cope and adapt adequately. However, a subset of children and families had more severe or lasting problems and required additional psychological help. It also became clear that the success of a coping effort was a complex interaction between the characteristics of the threatening situation, characteristics of the individual, the coping resources, and time; there was no one optimal way of coping in all situations. While disappointing, this realization suggested areas for further research and also clarified the continuing need for well-trained mental health professionals in the clinical setting to help evaluate how family members are coping and to provide sensitive interventions that are appropriate to the person and situation.
Recent work has increased our understanding of patient and family needs and indicated other directions for research and clinical care. Intervention research has progressed but much work remains to establish effective interventions for the full range of problems experienced by the child with cancer and their family members. While other chapters focus more thoroughly on specific psychological issues and interventions, this chapter highlights recent research findings in the area of coping and adaptation to cancer and suggests ways in which they may be clinically useful.
What Is Coping?
Coping is universal. Life brings all kinds of stresses that must be managed in order to survive, grow, and thrive. Day-to-day living involves coping with numerous stresses and hassles. While there have been many ways to describe coping, perhaps the most comprehensive definition is that of Richard Lazarus, whose theory and research have guided much of the coping field. Coping means “cognitive and behavioral efforts to manage specific external or internal demands (and conflicts between them) that are appraised as taxing or exceeding the resources of the person” (Lazarus and Folkman 1984). Coping is essential when we are faced with a situation or condition that is both potentially stressful and meaningful. Coping is a fluid process that is a transaction between the person and the environment affected by one’s age, personality, experiences, and situational demands.
Coping and Cancer
Coping in the context of cancer describes a method of integrating the cancer experience into the existing personality of the patient or family member. This requires acknowledging the threat cancer poses and the demands of cancer treatment while, at the same time, managing emotional reactions and maintaining essential aspects of the child’s or family member’s identity and role in the family and community.
Every cancer patient and every family member must find ways to cope with the disease, its treatment, and sequelae, each of which presents an unfamiliar set of stressful situations. From the initial difficult diagnosis discussion, to the challenges of survivorship or the heartbreak of a child’s death from cancer, coping defines the interaction of the person with the cancer experience. In describing the intense emotional reactions children and families exhibit, Simms et al. (2002) referred to “clinically relevant distress” as distinguished from psychopathology, pointing out the inevitability of distress in the context of a cancer diagnosis. He noted that high-level distress in the context of a high-level threat like cancer represents an appropriate, not a pathological, response. This is true at diagnosis and also at points of potential or actual medical exacerbation, such as entry into stem cell transplantation or relapse. Sensitive experienced clinicians can distinguish appropriate reactions at such a point from reactions indicative of poor coping and unstable emotional status.
Anger is not uncommon at these times, but sometimes it is so intense and unrelenting that it signals deeper problems and requires more attention.
Case Vignette
When Chloe was referred to a new cancer center for a stem cell transplant, her mother, a lone parent, arrived in clinic and initially would not talk to staff or answer their questions. After several attempts by staff to engage her, she became visibly irritated and began pacing, swearing loudly at staff, complaining that they didn’t know what they were doing. After admission, her anger did not abate, but continued, with threats of lawsuits if staff were to make any mistakes. At one point, security was called, after which her behavior was less intense. During the hospitalization, Chloe’s mother slowly began to trust one nurse and one psychosocial clinician, but mostly to vent her anger about other staff (there were “good” and “bad” staff). The nurse and psychosocial clinician acknowledged her distress, but did not side with her against other staff, and encouraged her to focus more on Chloe and to work with staff to help Chloe through the hospitalization. They suggested that Chloe’s mother “teach” the staff about how she helped Chloe at home. This approach helped for brief periods, but she continued to have occasional angry outbursts, though they were more contained. Staff suspected this was a preexisting pattern of behavior that went beyond a distressed response to stem cell transplantation and learned that she had a history of emotional outbursts and confrontations including similar behavior at their home hospital.
As treatment continues, stressful situations continue to present themselves and it is important to understand the specific stressors with which the person must cope, as coping depends on context. We have outlined many of the stressors that children and families have to face throughout and after treatment (Patenaude and Kupst 2011). For example, after diagnosis and in early treatment, parents must try to absorb all of the medical and treatment information they receive in order to make rapid decisions about their child’s treatment. At the same time, they seek to support their child, manage their own emotions, and begin to integrate hospital demands with home, work, and family needs. Children must deal with unfamiliar, invasive, and painful procedures, side effects of treatment, and interruptions of school, peer, and social activities. They must often cope with separation from their families and friends and with adjustment to the hospital environment. Even when treatment ends, children and parents must try to balance their happiness and relief that treatment is over with the loss of the support they relied upon from treatment and staff. After so much time focusing on cancer and treatment, it is challenging to reorganize family, work, school, and social lives while maintaining optimism about future health, knowing there is the lurking possibility of recurrence or relapse.
Survivorship can mean the end of cancer, but the need to cope persists as children and parents manage the physical, neurocognitive, and/or psychosocial late effects of treatment. In some cases this involves coping with diminished cognitive functioning and changes in academic and vocational plans. Late effects may require children to cope with general medical and/or psychosocial follow-up, repeated assessments, and ongoing care for posttreatment conditions (see Chap. 15 on Survivorship).
Clinical work with children with cancer makes us aware that, in addition to the burdens and fears associated with the diagnosis of a child with cancer and the treatment and uncertainty which follow, cancer is often not the only major stressor families are experiencing. We detail here several examples of family experiences, which may further burden the coping resources of families where a child has cancer. Some relevant concurrent stressors can be serious illness in a parent themselves or in another family member (see section on the stress of hereditary cancer); chronic illness of a sibling requiring special education or home care; economic problems including work, insurance, and housing; and low levels of social support.
Family and Coping
There is no doubt that the diagnosis of a child with cancer is a life-changing event for everyone in the family. The high demands of treatment and the psychological imperative requiring a parent to be with their child through as much of the cancer experience as possible alter parents’ work, home, and social lives. When there are two parents, the child’s diagnosis affects their relationship as well as their relationship to their other children. We know that family conflict or lack of cohesion affects the adjustment of children and parents to cancer (Alderfer, et al. 2010; Long and Marsland 2011). Sometimes there is only a single parent or a parent who functions as a lone parent (Brown et al. 2008; Mullins et al. 2011; Wiener et al. 2013). Cancer in a child multiplies what may already be a significant care-taking burden falling on one parent. Early attention to ongoing parental and family problems is essential, given the close intercorrelation between parent and child well-being (Hile et al. 2014).
Family conflict occurs within intact families, but divorced families face special challenges when a child is diagnosed and treated for cancer. The cancer diagnosis in a child upends the familial restructuring which is often achieved only with difficulty after a divorce. Caretaking in the hospital, caring for the other children at home, and making important decisions about their ill child’s care under stressful, emotional conditions often lacking in privacy put parents and stepparents into novel, often uncomfortable, juxtaposition. Being in each other’s presence may itself be a stressor for divorced parents and disagreements about limit-setting, discipline, indulgence, bedtimes, and handling of the child’s response to treatment medications can increase stress on parents, which is often passed on to the children in the family. Clinicians skilled in family psychotherapeutic techniques as well as in understanding the hospital climate and procedures can help strengthen coping approaches and communication between parents and between parents and staff during this difficult time. Please see Chap. 6 on Psychotherapeutic Modalities. Family-based interventions can be particularly helpful in circumstances where family relationships prior to the diagnosis were strained. Physical distance and financial issues can add to parental strain when the child is treated far from the family home. Communication technology such as texting, Skyping, sharing photos over the Internet, e-mailing, and using social media has reduced the sense of isolation experienced by both the hospitalized child and the family remaining at home.
Case Vignette
Sophie, an almost 16-year-old with osteosarcoma, was hospitalized far from home for surgery. Due to an extended hospital stay, she was going to miss her 16th birthday at home with family and friends. Her mother decorated her hospital room and brought presents and cake, but this was hardly the celebration Sophie had anticipated. Unknown to Sophie, however, her mother also had arranged two Skype video calls. One was with her father and brothers at home who had decorated the house and had a cake with candles and presents for Sophie. The other was with her friends who sang “Happy Birthday” and promised Sophie a better in-person party when she returned home. The friends also posted Instagram birthday wishes and promised to keep her updated with social happenings at school through Facebook.
Cultural Considerations
We sometimes assume homogeneity of values, meaning, and desires in patients and parents of children with cancer, but with increased diversity in our populations, it is very important to recognize and assess families for their particular views and practices related to their cultural, national, or ethnic origins. There are considerable differences in the ways people cope with cancer in different cultures. Expectations vary in how parents and their child should behave in the medical setting and what they expect from medical caregivers, especially about how and how much to tell a child about his/her disease and treatment (Gray et al. 2014). Adjustment to the hospital may be especially stressful for families who come from a distant country for the child’s treatment or when the family has migrated to a new country, but are not well acculturated to their new land. Language limitations, unfamiliarity with the physical environment in and outside of the hospital, cultural disorientation, difficulty preparing familiar food for the child and other family members, and higher costs add to the family stress. Problem-solving interventions for international cancer patients who may spend prolonged periods of time in an unfamiliar cultural setting are valuable in helping them accommodate to the alterations in their environment. It should be noted albeit to a lesser extent that all families experience challenges in these areas, as the hospital environment is an unfamiliar and daunting world, demanding adaptability on the part of all whose lives become centered there. Reducing some of these practical barriers is important, but it does not treat the sadness and fear that diagnosis of cancer in a child evokes in all family members. Therapeutic support sensitive to a family’s cultural perspectives should be offered to the fullest extent possible to reduce distress.
Hereditary Cancers
Hereditary cancers add additional layers of stress to the family experience. Multiple family members may concurrently be treated for cancer, are cancer survivors, or have experienced the loss of an unusual number of relatives from cancer. Identification of a cancer-predisposing mutation that affects a child’s risk of developing cancer raises concern about the mutation status of the ill child’s siblings. It also increases the pressures placed on parents to communicate these risks to their own siblings, cousins, parents, and other blood relatives so that other at-risk family members can have genetic testing. For those found to be mutation carriers, preventive actions or targeted screening can be undertaken to detect cancers at the earliest and most treatable point. Family communication about family history and other related matters about risk can be very difficult and add significantly to the burdens on parents. Communication between parents and children about hereditary risk has been identified by parents in high-risk cancer families as an area they find unfamiliar and one in which they would welcome help from professionals (O’Neill et al. 2015).
Relapse
Relapse or recurrence challenges the “new normal” in which families evolve in the wake of the diagnosis of a child with cancer. It reduces hope for survival and brings back fears about treatment and its effects on all aspects of the family’s life. It demands a higher level of coping, not just with the personal and logistical organization required, but with the maintenance of hope in light of reduced odds for survival. It may challenge spiritual beliefs and can lead parents to question whether other doctors or hospitals might have more effective treatments. Patients, parents, siblings, and grandparents (Wakefield et al. 2014) all need support at such a juncture to help them find the strength to continue to function and to cope with what can be, at times, overwhelming fear and sometimes anger, irritation, and depression.
Coping Style and Strategies
The way people cope and the effectiveness of their coping strategies determine how well they adapt to the series of stressful situations that are part of cancer diagnosis, treatment, and survivorship. Knowing a person’s typical coping style can help a clinician select optimal ways to approach children and families. Some people prefer to have a great deal of information (“monitors”), while for others a large amount of detailed information can increase anxiety (“blunters”) (Miller 1995). For those who prefer the monitoring style, seeking and receiving information is a way of coping that helps them to adapt to the situation through perceived control. For those who have a blunting style, presenting an overview followed by several small increments of information may reduce anxiety. Similarly, it is often assumed that talking with others helps people cope with stress, and for some people this is true. However, others may prefer to be alone in order to process their thoughts and manage their emotions before talking with others. Knowing which way people typically cope can help in providing effective interventions. This information can also be usefully shared with the medical team to help guide their interactions with the patient and family.
It used to be that a “defensive” style was considered negative, but more recent work has tempered that belief somewhat (Phipps et al. 2006; Harper et al. 2014). In several studies, children and adolescents with cancer showed lower levels of anxiety and reported fewer psychological problems than children in the general population or those with other medical conditions. A possible explanation offered was that such reports represented denial or repression. However, a “repressive adaptational” style (Phipps et al. 2001) is not necessarily problematic and can be adaptive, especially early in the cancer experience when the volume of emotionally upsetting information received can approach unbearable levels. Finding a good fit between style or disposition to cope and the demands of the situation can enable the clinician to help improve patient or parent coping and/or to offer reassurance that the approach will not prove detrimental. Past research has helped us define successful adaptation to cancer as coping which allows the child to tolerate bad news and unpleasant treatment and to express appropriate emotions, yet to remain in reasonable interpersonal connection with others in the hospital or home setting and to continue to experience themselves as whole and cared for. For parents, coping means being able to understand the realities and implications of the medical information about diagnosis and treatment, to regulate strong emotional reactions and maintain equilibrium, and to do what is necessary to participate in care of the child and attend to other responsibilities.
The stress and coping framework suggests that when a person is presented with a stressful situation, they must determine if it represents a significant threat or stressor. If it does, the next question they need (often unconsciously) to ask is, “Can I change or affect it in some way?” This second question involves the potential use of a range of different coping strategies. Several schools of thought (see reviews by Aldridge and Roesch 2007; Skinner and Zimmer-Gembeck 2007) suggest that, in cases where something can be changed, an active, problem-focused coping “approach” can be most helpful. These would be efforts such as seeking information, problem-solving, or confronting the stressor. For a child with cancer who is going to miss school for treatment, it may mean getting information about alternative ways to keep current with schoolwork and peers. In cases where the stressor cannot be changed and the reality that cancer will mean stopping an activity such as sports may require emotion-focused coping strategies such as cognitive reappraisal or acceptance. When a situation is not changeable, a person can change how he or she thinks and feels about it and can utilize stress management techniques such as distraction, relaxation, etc., to manage the situation (see reviews by Compas et al. 2012; Vrijmoet-Wiersma et al. 2008). It is, however, always important to acknowledge that people may use many different strategies over time or even in response to the same stressor. There is no 1:1 algorithm that a particular stressor will always necessitate the use of a particular coping strategy, but rather that the circumstance and the person define the optimal approach. The solid research published in recent years by Bruce Compas and colleagues offers promise to better understand individual use of strategies in various situations, as well as development of interventions to teach or enhance coping (Compas et al. 2014).
An example of differences in coping is the way childhood cancer survivors deal with ongoing cancer activities. Some survivors become actively involved in volunteer efforts, such as camps for children with cancer, survivorship groups, fund raising for cancer-related causes, and mentoring newly diagnosed patients. It is not uncommon for survivors to pursue careers in nursing, medicine, social work, psychology, or child life and some express their desire to help others with cancer as they were helped. Others however consider their cancer experience “ancient history” as one young man put it, and they focus more on “getting on with the rest of my life.” This isn’t denial or repression. He freely spoke about having had cancer and his treatment, including late effects, and has kept in touch with staff and patients he met during his treatment, but his focus has shifted away from cancer. Both are ways of coping and demonstrate that individual approaches can be equally adaptive.
In our earlier review (Patenaude and Kupst 2005), we reported that many studies found most children and parents adapted remarkably well despite the intense stresses of cancer diagnosis and treatment but also that some (estimates of 20–30 %) exhibited significant or unremitting distress. More recent research supports this view, showing that a similar minority has serious problems at some time during the cancer experience (Long and Marsland 2011; Compas et al. 2012). For this group, many of the forms of intervention described in other chapters of this volume may be particularly helpful (see Chaps. 6, 8 and 9).
Developmental Aspects of Coping
As physical, cognitive, and emotional development emerges, so do ways of coping (see review by Kupst and Bingen 2006). Infants exhibit stress reactions, such as withdrawal from hurtful stimuli and stress responses, such as crying to elicit parental help. Toddlers and young children begin to show voluntary efforts and ways to better regulate their emotional reactions, including fantasy, play, and distraction. As childhood progresses, children begin to increase their ability to use voluntary control and cognitive ways of coping such as cognitive reappraisal and problem-solving. Older children and adolescents can use more cognitive strategies in problem-solving in controllable situations. They can use emotion-focused coping in uncontrollable situations, as their ability to have a future perspective increases. With maturation, coping becomes more multidimensional, complex, and flexible.
Even very young children of 3 or 4 years, however, can be helped to cope through distraction, fantasy, and play (Linn et al. 1986). Interventions with younger children are more likely to be around emotional regulation. Many of the diagnoses of childhood cancer occur when children are under 8 years of age (Bjork et al 2006). Approaches which help young children acclimate to the hospital environment, sometimes provided by activities of therapists and sometimes by mental health staff, can be very useful in containing the anxiety, fear, and sense of isolation which many children experience at diagnosis and early in their cancer treatment. Consistency of compassionate care from nursing and medical staff can also contribute to calming children in the hospital. Fantasy play including puppets (Linn 2008) in the hands of well-trained professionals can help children express the worries that are common at this stage, which can help suggest directions for further discussion and/or intervention. Surprisingly, there is relatively little published about the most ubiquitous intervention offered to children with cancer and their family members, psychotherapy or psychotherapeutic consultation. There is some European work emerging to delineate the functions of play therapy in the life of the child with cancer (Pitillas 2014).
As school and peer relationships are crucial for school-age children, where possible, continuation of schoolwork should be fostered through ongoing communication with teachers and educators, sometimes including visual connections to the classroom via the Internet and return to school as early as possible. Contact with peers should be maintained in person, if possible, or if not, children can keep in touch through notes, phone calls, the Internet, or Skype. School-age children can benefit from interactions with other children with cancer (if they and parents desire it), as well as a combination of child psychotherapy and play activities. Similarly, adolescents benefit from academic and peer support, as well as environments and activities appropriate to their developmental level, including web-based resources and psychotherapy for relevant stresses. If they were actively involved in sports or extracurricular activities such as music or theater, they should be encouraged to continue their participation even if it is limited by treatment or disease impact.
Other Variables Related to Coping with Cancer
Factors found to be related to coping include time since diagnosis, duration of treatment, late effects resulting from diagnoses and treatment involving the CNS, previous functioning and family functioning, and socioeconomic resources. Coping and adjustment are, of course, also closely connected (Patenaude and Kupst 2005). Later work has also noted the role of early psychological functioning, past traumatic events, family functioning, and emotional resources (Rodriguez et al. 2012; Vrijmoet-Wiersma, et al. 2008).
Time since diagnosis has been recognized as an important factor, with reductions in distress typically, but not always, occurring with additional time to cope and to adjust to the routines of a changed reality. Those who were able to cope early in the cancer experience tended to cope more effectively throughout the experience. Studies have supported that coping and psychological functioning early in treatment are predictive of later functioning (Aldridge and Roesch 2007; Klassen et al. 2011). This is why it is especially important to see children and families soon after diagnosis to assess how they are coping and to determine a strategy to help them adapt.
Assessment
The need for early and repeated assessment of the coping and adjustment of children and families affected by pediatric cancer has been increasingly recognized as the basis of good clinical care over the challenging period of treatment, in the years of survivorship, in the circumstance of recurrence, and at the end of life (Wiener et al. 2015). Measures developed in the 1980s and 1990s continue to be widely utilized in assessment of actual coping behavior (Patenaude and Kupst 2015) and newer measures have been developed. Some common coping measures include the Ways of Coping Questionnaire (Folkman and Lazarus 1988) for adolescents and adults, the Kidcope (Spirito et al. 1988) for children over 7 years of age and adolescents, and the Responses to Stress Questionnaire (Connor-Smith et al. 2000) for adolescents. More generally, measurement development in recent years has focused on the development of new tools to assess psychological functioning of children with cancer and their families. Established and promising new measures of psychosocial outcomes including adjustment, distress, anxiety, and depression can be used to assess the efficacy of coping as well.
Until recently, attempts to assess psychological outcomes in children with cancer involved lengthy batteries of neurocognitive and psychosocial tests. While these are reliable and valid tests in common use in clinical psychology, they also are labor-intensive, take hours to administer and score, and are costly. The Children’s Oncology Group Behavioral Sciences Committee developed a relatively brief screening battery. The Neuropsychological, Social, Emotional, and Behavioral Outcomes in Children with Cancer (ALTE07C1) (Embry et al. 2012), a battery of standardized neurocognitive and psychosocial measures, is currently for use in a clinical research context, but is increasingly seen as having clinical value as a first step to determine which children with cancer are in need of additional cognitive or psychological assessment and intervention.
PROMIS and NIH Toolbox Resources
There are many traditional measures of psychosocial functioning that continue to be used in pediatric cancer. Recently, two large-scale projects, the Patient Reported Outcomes Measurement Information System (PROMIS) and the NIH Toolbox for Neurological and Behavioral Function, have developed brief measures of psychological functioning, including stress and coping, that can be used across the life span (including measures for children and parent proxy (Forrest et al. JPP 2012; Salsman et al. 2013; Kupst et al. 2015), have good psychometric properties, and are free of charge. They are largely intended for use in clinical research but can be valuable measures for psychologists and other trained clinicians as well. The Psychosocial Assessment Tool (PAT) has sparked international research to assess the value and limitations of its predictive utility for child, parent, and family functioning (Kazak et al. 2011). See Chap. 4, Assessment, for more details about the PAT.Initial use of the PAT provides a standardized measure of psychosocial risk and can help clinicians to determine the level, intensity, and nature of psychosocial intervention that is particularly needed immediately following a child’s cancer diagnosis. This can be especially valuable in clinical settings with limited resources. The PAT is a useful adjunct to, but not, however, a replacement for a diagnostic interview with the child and his/her parents near the point of diagnosis, during which the initial steps toward relationship building can take root. An important part of that clinical interview is a determination of the nature and success of past coping strategies and assessment of the most pressing current issues affecting the family members. For example, a recent study showed that shortly after diagnosis, it was the role disturbances, not concern about the medical treatment, which were most upsetting to children with cancer (Rodriguez et al. 2012). Children especially needed help coping with their inability to go to school, play sports, or have typical peer interactions, as these losses were the most upsetting aspects of the early treatment experience.
The diagnosis and treatment of cancer can be particularly difficult for children and adolescents who have been actively involved in sports. Physical activity is often their primary and most effective way to cope with stress.
Case Vignette
Justin, a 12-year-old boy who was a star pitcher for his baseball team was diagnosed with ALL. He became quite depressed when he was told he would not be able to play baseball for the season. When questioned, Justin said that missing games and feeling like he was letting his team down made him more upset than having cancer. He was also worried that he would never be able to play again. Additionally, his involvement in sports had helped him deal with family stresses. Recognizing the important role baseball had been playing in Justin’s life, his psychosocial provider and medical team found a way for him to remain connected to his team that was medically feasible. Justin spoke with his coach who reassured him he had a place on the team and made him a “player-coach.” His coach videotaped practices and games and asked Justin for input on team members’ performances. His coach also gave him a medically approved workout routine to help him keep in shape and reminded him of his ultimate return to the lineup. After induction therapy, Justin was able to attend home games and sat on the bench continuing in his role as a “player-coach.” The following spring he was able to return to playing with his team.
Justin was fortunate. In some cases, especially those involving permanent loss of limb or function, children are not able to continue in sports which have sustained them in the past. After amputation or other “career-stopping” surgeries, they must develop other ways to deal with stress and may need help from psychosocial clinicians to find new activities that can be rewarding or stress reducing. Some choose an alternative type of physical activity, while others may turn to music, writing, making videos, increased concentration on school or work, or developing new social groups. The social support from other patients is often helpful because others who have gone through similar situations can discuss what they did to cope with these significant losses.
Trauma and Resilience in Pediatric Cancer
There are currently several models to explain the psychological impact of pediatric cancer. One model views the experience of cancer as a trauma, where children and families are at risk for posttraumatic stress responses. Research has been done to assess whether children and parents have posttraumatic stress disorder (Bruce 2006). While most do not meet diagnostic criteria for the disorder, some could be said to have posttraumatic stress symptoms (PTSS). However, the prevalence of PTSS was relatively low in children undergoing cancer treatment and only moderately higher in parents and survivors (Alderfer et al. 2010). Data from these studies indicated that, even with significant trauma, most did not have PTSD or PTSS and, in fact, many experienced posttraumatic growth (Picoraro et al. 2014).
What has emerged is a model that shows that many children and families are resilient, in spite of the frightening, sometimes overwhelming traumatic situations they experience in the context of the child’s diagnosis and treatment for pediatric cancer and in spite of intense distress they experience in responses to these situations, (see reviews by Noll and Kupst 2007; Phipps et al. 2014; Wechsler and Sanchez-Iglesias 2013; Harper et al. 2014). Haase’s (2014) Resilience in illness model stresses the importance of coping as a protective factor and this research has provided the basis for interventions to promote coping and resilience.
Interventions: Helping Children and Families Cope with Cancer
Coping is often viewed, if effective, as a way to achieve better adjustment or adaptation. The questions of (a) “What, in particular, is most important to cope with at a particular time in treatment?” and (b) “What are the available personal and environmental resources?” must be answered to determine what the most effective intervention will be. In most cases, multiple levels of intervention are needed over time, as the stressors are typically environmental, physical, and psychosocial. Unfortunately many different factors can influence an individual child’s or parent’s response to an intervention, so even with knowledge of a problem area, knowledge of particular individual or family strengths or weaknesses (Scholten et al. 2015), and access to an established intervention, the desired relief is not always achieved. Cultural, educational, cognitive, attentional, and physical factors can complicate the utility of a particular intervention at a point in treatment or afterward and can sometimes be barriers to the success of the intervention. The expertise and experience of mental health clinicians are often called upon to view the composite family situation and to assess the strengths of the family members as well as to understand the particular stressors of the clinic or ward environment in relation to the current coping of the child and close relatives.
While they may not be designated as “coping” interventions per se, a number of interventions have been designed to help optimize coping for members of families of children with cancer. For example, cognitive-behavioral therapy (CBT) has been found to be effective in reducing anxiety and distress, and most current interventions include some components of CBT. See Chap. 6 on Psychotherapeutic modalities for details. Problem-solving skills training (Sahler et al. 2005) has been found to be helpful in teaching mothers of children with cancer how to reduce negative emotions and anxiety, using the role of active, problem-focused coping. Similarly, helping parents develop coping strategies, such as acceptance and cognitive reappraisal, can be helpful in dealing with uncontrollable aspects of the cancer experience (Rodriguez et al. 2012). Other interventions have involved attempts to help parents cope with their child’s cancer diagnosis, (Kazak et al. 2007; Mullins, et al. 2012), as well as completion of treatment (Wakefield, et al. 2011). In addition, there are several approaches to help terminally ill adolescent patients cope with fears and make end of life plans (Zadeh et al. 2014) and help parents and families with reactions to bereavement (Donovan et al. 2015).
Technology promises to make longitudinal assessment of children’s coping and quality of life easier in coming decades. A study in the Netherlands showed that a program of home-based, electronic child self-report of quality of life in which data is provided before clinic visits to the medical providers resulted in greater discussion of psychosocial topics within the patient visit (Engelen et al. 2012). Such interventions may especially help more reticent children share information with providers; may remove the burden from either patient, provider, or parent to ensure psychosocial factors well-being is discussed (a necessary preliminary to intervention); and can actually save physician time.
Summary
Coping represents a universal phenomenon which all parents and patients engage in when a child is diagnosed with and treated for cancer. We continue to learn more about coping and to enhance our theoretical understanding about the ways in which personal, medical, and environmental factors affect coping and, subsequently, affect the success of interventions to improve psychosocial outcomes and reduce distress. The skill of psychosocial clinicians continues to be essential in assessing coping strategies in individual patients and families. This clinical expertise is also important in the selection and administration of effective interventions that take into account relevant factors exerting major influences on coping in the child’s and family’s experience.
Clinical Pearls
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The diagnosis of a child with cancer is a life-changing event for everyone in the family; it may not be the only major stressor families are experiencing.
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Successful adaptation to cancer involves coping which allows the child to tolerate bad news and unpleasant treatment and to express appropriate emotions while remaining in reasonable interpersonal connection with others in the hospital or home setting and continuing to experience themselves as whole and cared for.
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For parents, coping means being able to understand the realities and implications of the medical information about diagnosis and treatment they have been given, to regulate strong emotional reactions and maintain equilibrium and to do what is necessary to participate in the care of the child and to attend to other essential responsibilities.
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A clinical diagnostic interview early in treatment can determine the nature and success of past coping strategies and assessment of the most pressing issues currently affecting the family.
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The skill of psychosocial clinicians is essential in observing coping strategies in individual patients and families and in selecting and administering effective developmentally and culturally appropriate interventions.
References
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Kupst, M.J., Patenaude, A.F. (2016). Coping and Adaptation in Pediatric Cancer: Current Perspectives. In: Abrams, A., Muriel, A., Wiener, L. (eds) Pediatric Psychosocial Oncology: Textbook for Multidisciplinary Care. Springer, Cham. https://doi.org/10.1007/978-3-319-21374-3_5
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