Cancer is often a feared, but not an expected diagnosis, and psychological stress is a natural response to obtaining this life-threatening diagnosis. For families of children with cancer, the stress response has been studied with respect to multiple emotional manifestations; the widely studied are depression, anxiety, feelings of uncertainty, and posttraumatic stress response [11]. These emotional symptoms are experienced by families to varying degrees depending on the interplay of multiple factors such as the phase of illness, context of diagnosis and treatment, and psychological vulnerabilities.

A significant factor involved in the long-term impact of pediatric cancer diagnosis on families is the process families experienced from the moment they felt something was “not right” with their children to the moment they find out about the final cancer diagnosis [12]. The diagnosis of pediatric cancer is not always made within initial visits to health professionals because initial symptoms of cancer are, most often than not, very vague and are at first misdiagnosed as common cold or flu. As the accurate diagnosis is usually belated for pediatric cancer and more so for brain tumors, right after the diagnosis, most parents’ confidence in their judgment about their children’s health decreases [13] and the delay in diagnosis adds to the difficulty of hearing about the cancer diagnosis [12].

At diagnosis, a distressing realization on the part of parents is that their children’s death is imminent without treatment including invasive procedures, and even with treatment, death may not be averted [14]. In one of the few studies on parents of children with a diagnosis of brain tumor, Freeman and colleagues [15] investigated problems parents experience during each phase of illness. The two most commonly experienced parental problems during the time of diagnosis were concerns about the cause of illness and the manner in which prognosis was communicated. Similarly, siblings of children with brain tumor also stressed the lack of communication about health information and prognosis as sources of important problems during diagnosis [16].

The lack of precise prognostic information and treatment regimes generates a feeling of uncertainty and fear of possible death [17], which persists for many families throughout the course of the illness. Uncertainty feelings are closely linked with thoughts of “what if’s,” leading to difficulties in making decisions, doubts about one’s capabilities in managing cancer, and feelings of insecurity [13]. Cancer symptoms and side effects of interventions, if not managed well, could trigger and intensify the uncertainty feelings regarding cancer trajectory [13], in turn leading to an increased risk for symptoms of posttraumatic stress [18]. In addition to these findings, the findings of a qualitative study are noteworthy; the experience of certainty in cancer diagnosis and treatment, rather than the uncertainty, may be perceived as more stressful [13]. The uncertainty of cancer trajectory may generate a sense of hope and hope could help families cope with difficult times throughout cancer treatment.

At the time of diagnosis, families face various challenges aside the uncertainty; they have to manage their own stress while managing their children’s care and treatment [19]. Coordinating their child’s care requires reorganization of family roles and daily routines. New restrictions to their daily living and extra work are distressing for families and could be hard to handle given the long-term cancer treatment regime [13]. Providing explanation of the diagnosis to their children in an age-appropriate way and responding to their anxieties and fears are only few of the many difficult tasks of the diagnostic phase [14].

Most parents naturally experience a shock and psychological distress in response to the diagnosis of cancer; some may also experience impaired cognitive abilities such as having a difficult time processing, learning, and retaining information related to their child’s illness and treatment. Research has not shown consistent evidence for this effect [20, 21]. Risk for psychiatric diagnosis is high for parents of children with cancer, but the majority does not experience psychiatric symptoms at a clinical level despite the challenges of cancer trajectory. Most reported symptoms are at preclinical levels and decrease over time [22]. Existing coping skills play a significant role in how parents overcome psychological distress. Parents with difficulties in emotion regulation and with preexisting risk conditions have the highest risk for psychiatric diagnosis following the cancer diagnosis.

Research findings indicate that it takes about a year to adjust to the diagnosis of childhood cancer [8, 23, 24]. During the adaptation period, most parents experience increased symptoms of depression and anxiety [25–29]. Anxiety symptoms have been shown to attenuate following the year of adaptation [2, 11]. In a prospective study, anxiety levels of parents of children diagnosed with cancer decreased to relatively normal levels 5 years after the diagnosis [11]. A small proportion of parents continue to experience higher levels of anxiety compared to parents of healthy children, which puts them under the risk for developing posttraumatic stress symptoms [30, 31]. Unlike anxiety symptoms, studies have shown inconsistent results for the course of depressive symptoms through the cancer trajectory [26, 32]. The initial depressive reaction of moderate to severe levels is more likely to persist over time.

A meta-analytic study on the effects of pediatric cancer on parents and families showed that mothers of children with cancer experienced higher distress compared to fathers of children with cancer and mothers of healthy children [2]. These findings have been accounted by the higher frequency of contact of mothers with their children during their care [33, 34], but reporting biases of women compared to men could also explain these findings. This is not to say that fathers do not experience distress; findings suggest that they do, although not as high as mothers, but more than fathers of healthy children [2]. With respect to family functioning overall, mothers of children with cancer perceived higher levels of family conflict than mothers of children without cancer. Increased demands on logistic, financial, and emotional resources may account for higher conflict in families [2].

After the adaptation phase, most studies have shown no differences between families of healthy children and families of children with cancer. Similarly, in a prospective study with 212 mothers of children recently diagnosed with cancer [35], previously reported mild negative affect and depressive and posttraumatic symptoms decreased steadily 3 and 6 months after the diagnosis. Among posttraumatic symptoms, intrusion and hyperarousal, but not avoidance, decreased over time. It has to be noted, however, that for cancers of more severe type as brain tumors, and posterior fossa in particular, the resilience may be compromised and the risk may be higher.

In the aftermath following the adaptation phase to cancer diagnosis and course of treatment, posttraumatic stress symptoms are most common. For only 11–25 % of mothers and 10 % of fathers, these symptoms are as such to be diagnosed as a disorder (posttraumatic stress disorder (PTSD)) [36]. Avoidance of any cues related to cancer, intrusive thoughts, reexperiencing of stressful experiences related to their child’s illness, and physiological arousal at cancer reminders are commonly experienced as posttraumatic stress (PTS) symptoms at subclinical levels by parents of children with cancer, approximately 37–44 % for mothers and approximately 33–36 % for fathers [36]. A study investigating the dyadic pattern of PTS symptoms in parents of children who survived cancer showed that most families have at least one parent who experiences moderate to severe levels of PTS symptoms [36, 37]. In Alderfer and colleagues’ study, mothers most often experienced reexperiencing and emotional hyperarousal symptoms, whereas fathers had difficulties with memory, concentration, and decision-making [36].

Social support is strongest during diagnosis and declines over time [38]. Considering the decline following diagnosis, it is important for providers to help families find and actively seek support from family, community, and hospital resources. Better adjustment of parents to childhood cancer is related to better social support [39, 40]; the risk for posttraumatic stress symptoms increased for parents who report lack of support [30, 41]. The positive association between social support and psychological distress experienced by parents was not consistently found for both fathers and mothers, some studies showed a stronger influence of social support on the psychological adjustment of mothers [41, 42], and others showed a stronger effect for fathers [38]. Overall, it is important to assess the availability of a support network for parents.

Studies on coping in children with cancer and their families are few in number [11]. There are two major approaches to categorizing coping strategies children employ, with overlaps in their definitions: emotion- and problem-focused coping [43, 44] and approach and avoidance strategies [45]. Problem-focused strategies involve efforts to affect the source of stress in the environment, such as planning, seeking instrumental support, problem solving, and logical analysis, whereas emotion-focused strategies involve efforts to cope with emotional response to the source of stress, such as optimism, humor, seeking emotional support, and relaxation. Approach strategy reflects efforts to handle the source of distress directly, and these strategies include seeking information, seeking guidance, problem solving, planning, and logical analysis. Avoidance strategy, on the other hand, reflects efforts put forth to divert away from the source of stress, such as wishful thinking, denial, behavioral and mental disengagement, self-blame, and emotional venting. Existing evidence suggests that different coping strategies are effective depending on various factors, including the stage of illness, controllability of the situation, and age of the ill child [46]. Emotion-focused strategies (e.g., seeking emotional and social support, acceptance, and relaxation) were found useful in decreasing acute stress and overcoming the difficulties of the first few months following the diagnosis [46]; however, they are related to difficulties in psychological adjustment during active treatment and maintenance phases of illness [31]. The use of passive or palliative reactions leads to a short-term, but not long-term, relief and typically involves avoidance behavior and negative emotional expression, both of which were found to be associated with more depressive symptoms and anxiety in not only parents of children in active cancer treatment but also children that are cancer-free [47]. In active treatment and maintenance of treatment benefits, problem-focused and approach coping strategies are indicated [46, 47]. Age made a difference in the effectiveness of coping strategies; children of older ages used more cognitively oriented and emotion-focused coping strategies, while younger children used coping strategies directed more at changing the environment [48]. With increasing age, a wider range of coping strategies is used by children [49].

Routine psychiatric and psychological care and follow-ups for families of children with cancer have to be considered, especially for those with a recent diagnosis and for those with a prolonged course of treatment [9]. For instance, cognitive-behavioral treatment approaches, problem-solving skills training in particular [50], have been found to decrease distress in mothers of children recently diagnosed with cancer and have been recommended for mothers of children in treatment for cancer [51, 52].

For families with a prolonged course of illness and severe treatment regime, psychosocial services have to be intensified, and special care and referrals for routine and frequent follow-ups may be indicated [9].

Family members should be screened for preexisting risk factors individually such as history of psychiatric problems, past trauma, and lower socioeconomic status [53]; those with preexisting vulnerabilities are more likely to have increased levels of symptoms and distress and are, in turn, in more need for support and psychological intervention [11].

Families also need to be screened for or asked about family functioning. Problems within the family system are likely to make the cancer trajectory more challenging and distressing for family members. Less family cohesion and satisfaction were shown to be associated with heightened parental anxiety and posttraumatic stress symptoms in families of children with cancer [54]. Furthermore, family cohesion and the ability to express emotions and thoughts during the earlier phases of cancer diagnosis have been found inversely related to internalizing symptoms in children [9]. Treatments targeting family relationships and facilitating emotional expression and sharing could have protective long-term implications for parents and affected children. Research has shown support for family-based psychosocial interventions in decreasing distress related to childhood cancer [55].

Family management style (FMS) framework has been proposed as a road map in examining and understanding the strategies that are used by families in managing cancer diagnosis and treatment of children with cancer [56]. The major components of the FMS framework are the subjective definition of the child’s cancer to the family, management behaviors related to the treatment of cancer and its integration into daily life, and perceived consequences. Subjective meaning of the child’s cancer incorporates how families view their child with respect to his/her normalcy and capabilities; how families view illness with respect to its course, predictability, cause, and seriousness; and whether parents’ views of illness and child are mutual. Management behaviors include avoidance, proactive, and reactive reactions to managing cancer and how it is integrated into the routines of daily living. Perceived consequences are related to the extent to which families focus on illness and family life in general and future expectations related to their child’s illness.

In dealing with uncertainty, encouraging ongoing and open-ended communication within the families and between the health-care providers and families is vital. One has to consider that the posttraumatic aspect of cancer diagnosis might contribute to the sense of uncertainty as well. Families have also indicated that changing their future orientation to a focus on one day at a time and assigning new meanings to cancer, like that cancer helped the family to feel closer to each other, were helpful strategies in managing uncertainty [57, 58].

Managing symptoms is one of the most important components of cancer care. Keeping symptoms under control, whenever possible, helps families cope with their feeling of uncertainty, feel empowered in protecting their children from distressing experiences, and have a sense of stability [58, 59]. Stability in this sense also could help families to live normalcy at certain spheres of their lives [13]. Being able to protect their children from distressing symptoms helps parents as well as siblings feel empowered during this process [60].

Studies have shown that families want to be informed about their child’s health status to better cope with the illness and related uncertainty of future health [13, 58, 61]. Considering the potential protective quality of uncertainty at certain phases of illness [13], as a result of their qualitative study, suggested that much forethought be given to the type and time of information given to parents – parents’ readiness and willingness to hear certain types of information may vary and could be critical in how they manage the information.

Cancer treatment involves multiple repeated invasive procedures such as intravenous injections, venipunctures, and venous port access, chemotherapy, and surgical operations. Compared to other types of cancer diagnosis, most posterior fossa tumors call for hospitalization and surgical intervention. Many children and adolescents with cancer perceive the diagnostic and surgical procedures as the most stressful aspects of their illness [62]. Anticipatory stress prior to invasive procedures is inevitable for both children and their families. Children often manifest their anticipatory stress psychosomatically such as problems with sleeping, nausea, vomiting, and skin reactions [63].

Psychological and pharmacological interventions have been established to help children and their families manage symptoms of anxiety and fear related to distressing procedures and operations. Preoperational preparation programs date back to 1960s and mainly involved providing information related to surgery, building trust in the relationship between the medical staff and the child, and encouraging expression of emotions [64]. In the last two decades, the focus of research and practice has shifted from information-based programs to pharmacotherapy (e.g., sedative medications) and cognitive-behavioral coping skills training for children and their families [65–67].

Information-based preparation programs include narrative strategies, printed materials, puppet shows, tours, and films related to hospitalization and operational processes. These programs help families and children cope with anxiety that might stem from the unfamiliarity of hospital and operational procedures and help to increase their sense of control [68]. Certain factors such as age, previous experience with surgery, and duration of hospital stay prior to surgery were found to moderate the effect of information-based preparations in decreasing children’s stress related to invasive surgical procedures [69]. Older children, compared to younger children, retained information better; younger children needed information-based preparation closer to the time of operation. Prior surgical experience sensitized children to hospital-relevant films and thus increased their arousal. Children who were hospitalized within a short period of time to surgery were more likely to respond to hospital- and surgery-relevant information with increased anxiety and were more likely to benefit from distracting films irrelevant to hospital or operation. Children who had been hospitalized for a longer period of time prior to the surgical operation benefitted from hospital-relevant informative films.

Cognitive-behavioral skills-oriented strategies include breathing exercises, relaxation, cognitive/attentional distraction using guided imagery, storytelling, and video game playing, filmed modeling via videos or a puppet show, behavioral rehearsal, contingency management (reinforcement/incentive schedules for increasing adherence to treatment), and active coaching. Among these interventions, cognitive/attentional distraction and relaxation via storytelling have been found particularly effective in controlling nausea, pain, and anxiety [67, 70]. This strategy involves asking children to imagine a pleasant location or activity and telling stories or statements suggestive of a calm emotional state and wellness.

There is evidence in support of both the effectiveness of cognitive-behavioral interventions, and no differences were found in the effectiveness of cognitive-behavioral and pharmacological interventions [33, 65, 71]; however, little evidence supported the long-term benefits of either intervention [2, 65, 72].

Pharmacological interventions decrease the anticipatory and operational anxiety and helps with pain management, although with side effects of longer recovery period and greater medical risks. Cognitive-behavioral interventions involve few, if any, medical risks and do not involve a recovery period. Cognitive-behavioral strategies were found to increase coping skills and to reduce reported and observed preoperative anxiety, fear, and pain related to procedures like port access and venipunctures [65, 66]. Increased sense of mastery has been shown as a mechanism underlying the effectiveness of cognitive-behavioral strategies, and self-efficacy was shown to be a significant predictor of cognitive-behavioral intervention outcome [73]. This finding is in line with research indicating the effectiveness of emotion-focused strategies such as self-efficacy in reducing stress in uncontrollable situations prior to invasive procedures [46]. Despite these benefits, the cost-effectiveness in recruiting specialized personnel in teaching cognitive-behavioral skills have not yet been examined well, and its use has been limited in pediatric oncology [67].

Training parents to help their children deal with fear and procedural stress has been recommended as a strategy to increase the effectiveness as well as the feasibility of cognitive-behavioral interventions for children undergoing medical procedures [74]. In fact, research has shown that the effect of cognitive-behavioral interventions as preparatory programs prior to surgery is moderated by parental anxiety [75] and certain parenting attitudes and parents’ inconsistent use of prompts for distraction [76]. Parents who received training in both managing their own stress and coaching their children reported less distress, and their children experienced less fear compared to the families who were only shown puppetry film describing hospitalization and surgery procedures a week prior to hospitalization [77].

In sum, in addition to pharmacological interventions, increasing coping skills, mainly distraction and relaxation techniques, and information-based programs using films tailored to each individual patient could be recommended as the standard of care for children with cancer and their families prior to hospitalization and surgery [78]. It is strongly recommended that the active role of parents in the care of their children is encouraged in preparing for surgical procedures [68]. As parents take on more active roles, their sense of mastery is likely to stay intact or increase postoperatively. The ideal intervention appears to be teaching parents coping strategies with their own stress and training them to be coaches in helping their children cope with pain and anxiety. Parents have at least two major roles during hospitalization and surgical procedures [79]: One is that they exert themselves vigorously for the well-being of their children by staying nearby, being sensitive and responsive, facilitating knowledge, and offering consolation. Another major parental role is using the parental authority to actively assert the needs of their children. Medical health teams have to stay cognizant of and encourage these roles. Increasing the sense of mastery of both the parents and children preoperatively and postoperatively would potentially increase the resiliency of families in the long trajectory of cancer treatment.

Risk of cognitive impairment in brain tumor survivors is very high, with greatest risk indicated for the children of an age of 7 and younger [80]. Radiation and chemotherapy have been found to be associated with lower IQ and achievement scores, and surgery can result in brain injury associated with deficits in attention, processing speed, executive functions, visual-perceptual skills, and memory [81, 82]. Cognitive problems in memory sequential processing, fine-motor coordination, and physical stamina have been indicated for older children who survive brain tumors. Affected children have to learn to deal with neurocognitive effects and physical deficits.