Any negative life event creates changes that can be stressful and that require adaptation on the part of the individual. The initial period after such an event is critical, and the inability to cope during that period can be a precipitating factor in the development of long-term problems. Behavior patterns exhibited during this period are likely to become fixed and may shape behavior during subsequent phases [3], suggesting the benefits of an early and ongoing rehabilitation program [4]. Findings from a recent study emphasized the importance of early psychosocial intervention to reduce distress and manage treatment-related symptoms [5]. A study to evaluate a computer-based tool to explore symptom clusters experienced by AYAs found that it demonstrated potential to empower AYAs to communicate their symptom experience and partner with their healthcare providers, improve symptom management, and reduce distress [6].

Haase found that resilient adolescents frequently use the defensive coping strategy of denial in dealing with the cancer experience [7]. Baider and De-Nour found increased distress levels for young adults in active treatment that participated in a therapy group. They suggest that group therapy can be a factor in decreased denial in certain cancer patients and young people should be referred to group psychotherapy only when they are in a stable medical condition [8]. Maintaining a sense of hope and use of denial can be an important factor in the determination of when and what kind of therapy to offer AYAs with cancer.

Given the frequent report of anxiety, fear, and feelings of vulnerability, MacLean et al. suggest psychological care to target patients as they transition from on-treatment to off-treatment [9]. Parents of adolescents with cancer report increased anxiety at end of treatment. A family systems approach is recommended to help both patient and family adjust to the off-treatment phase [10].

Many survivors experience physical or psychological late effects depending on the treatment received. For many survivors, follow-up care needs to include psychological support [11]. Traditional health promotion advice is needed regarding the risks associated with smoking or sunbathing, for example. Problems that require some psychological intervention include those related to weight gain following treatment, infertility, or reduced cardiac function.

Chesler and Barbarin’s [12] Stress-Coping model is useful for organizing psychosocial issues across five dimensions: intellectual, practical, interpersonal, emotional, and existential. The utility of this model comes from its organization of the cancer experience into observable categories of stress, coping responses and strategies, and sources of social support. It helps identify patient and survivor needs from perspectives incorporating quality of life, positive adaptation, and family systems, thereby informing the development of interventions that address psychopathologic disease prevention as well as health promotion.

Various forms of psychosocial support have been suggested in working with AYAs as they attempt to cope with cancer, including peer-based interventions [13–16], individual psycho-educational counseling [17, 18], and skill-based interventions [16, 19]. More recently, modern electronic applications created technology-based ways to deliver information and support have grown in popularity to satisfy AYA needs for information and support [16, 20]. Developmental age, diagnosis, individual challenges and needs, as well as phase of treatment along the continuum of care should be considered in choosing a psychosocial approach. Such support should be offered routinely rather than in a response to a crisis. While there is a need for crisis-initiated interventions, such programs are the last resort and tend to foster stigmatization, alter effective treatment, and discourage self-help [21].

Communicating information to AYA cancer patients can be a sensitive issue. How people communicate information, tasks and feelings to AYA patients and survivors affects how they experience their illness and think about themselves and their current and future situations. All parties – doctors, other medical providers, family members and friends – need to attend to the manner as well as content of their communications and interactions with AYAs and to the social and emotional context within which communication and interaction occurs [22]. Some patients prefer to be shielded from direct communication about their cancer; others may desire to assume a more prominent position in the information flow and management of their care. For instance, Young and colleagues [23] report that parents most often manage what and how their children are told about cancer and that young people vary in their preferences as to how much information should be disclosed to them. Last and Veldhuizen [24] found that while the majority of young people with cancer prefer to be fully informed about their disease, approximately one-third of the young adult patients surveyed preferred not to know. Nonetheless, in general, AYA patients’ desire for information is a chief concern and the availability and communication of information is an important contributor to levels of satisfaction with care [25]. A sense of control plays a part in adolescent development and has implications for treatment adherence [26–28]. Giving adolescents options and choices is one way to regain a sense of control, often lost at diagnosis, for young patients. To enhance a patient’s sense of mastery and sense of control, List et al. (1991) suggest simple and understandable information and explanations about the cancer experience [4], with written directions on treatment procedures and medical schedules also recognized as being important [27, 28]. Recognition of the cognitive capabilities and unique developmental challenges associated with adolescence and young adulthood is important [22]. They typically express preferences for face-to-face communication with health professionals that is open, honest, nonjudgmental, respectful and inclusive of them in the formulation of treatment plans [29, 30]. Within the AYA group, there also appears to be a discrepancy between self-reported unmet need with regard to cancer, treatment and nutrition information with AYAs aged 20–29 years more likely to report unmet need than either younger or older AYAs [31]. Researchers and clinicians alike have stressed the importance of AYA survivors receiving adequate and direct information about their cancer history and related risks (e.g., late effects, including reduced fertility, risks for second cancers, potential genetic effects to offspring) [32–34]. Survivors themselves often express desires for services related to diet and nutrition, supportive counseling, health insurance, assistance with career planning, guidelines for appropriate long-term medical follow-up and access to community physicians familiar with oncologic late effects and meeting other long-term survivors [35, 36].

AYA survivors of childhood cancer often lack critical information regarding their cancer and its treatment, including information about types and dosages of treatment and in some cases even the type of cancer they had, along with knowledge about potential long-term late physical effects [37]. The active process of seeking and obtaining information about cancer appears to be related to improved self-confidence [34], and young survivors who preferred and received open communication about their diagnosis and prognosis at the initial stage of disease also showed significantly less anxiety and depression later [24]. Yet, AYAs’ attitudes about information-seeking may change over time, depending on cultural backgrounds or beliefs about cancer, health, or illness. The extent to which survivors and their family members perceive risks of relapse or a “need to know” also may influence information-seeking.

As AYA cancer patients complete treatment, grow older, become geographically mobile (e.g., move away from their families of origin and from their source of medical/oncologic care), and become more solely responsible for their own health care, the process of seeking and accessing health care is often perceived to be stressful [38]. Selecting employer-offered or other group health insurance packages and finding a doctor are all new experiences for cancer survivors to handle on their own. In these regards, survivors and health professionals alike have identified significant barriers or obstacles to obtaining appropriate follow-up care, including survivors’ lack of knowledge about relevant and appropriate care, limitations with regard to health insurance and financial resources, as well as healthcare providers’ lack of knowledge about relevant long-term survivorship issues [39].

The Internet is a useful resource for AYAs throughout the continuum of care for information, finding financial assistance, advocacy (returning to school, job searches, advocate for workplace accommodation), and fertility issues [40]. A study found patients who are newly diagnosed perceive the Internet as a powerful tool for acquiring information and for enhancing confidence to make informed decisions [41]. Other findings associated Internet use with increased self-efficacy, improvements in knowledge and treatment adherence, increased participation in their own care, and new modes of delivering cost-effective psychosocial support [16]. However, it is important that AYAs recognize that information on the Internet may be inaccurate and unbalanced and may cause unnecessary anxiety and concern.

Promising outcomes on the effects of telephone interventions and music video creation with AYAs suggest high levels of participation and satisfaction as well as improvement in symptom distress, self-efficacy, coping and quality of life [42, 43]. Kato et al. report that a video game for AYAs improved treatment adherence and knowledge [44].

As AYA patients undergo diagnostic procedures and subsequent treatment, they meet innumerable healthcare professionals and ancillary hospital staff who will be involved in their care for an extended period of time. Diagnostic tests, curative and palliative therapies, and subsequent side effects often bring discomfort, pain, nausea, vomiting, fevers and infections, fatigue, changes in appetite, altered bodily appearance, and sleep disturbances. While subject to these painful procedures and treatments, adolescent cancer patients have reported a lost sense of control over their lives [45, 46]. End-of-life care presents special difficulty as emotional stress increases, physical functioning deteriorates, and pain management becomes an issue.

AYA patients and survivors confront myriad disruptions in the worlds of school and work as a direct result of cancer diagnosis and treatment. Returning to school represents the continuation of “normal” life, as junior high and high school attendance for all and college for some are vital social and developmental activities for this population. Regular school attendance is vital to foster normal development and to prevent isolation from peers and social regression [47]. Research suggests the importance of encouraging adolescents to participate in school activities as fully as possible, since positive school experiences can reduce teenagers’ maladaptive emotional responses to the disease and its treatments by helping them feel academically accomplished and socially accepted [48]. It also helps reestablish normal life patterns and a renewed sense of control and stability as well as preventing educational disadvantage and decreased career/job opportunities for the future [49]. In young adult survivors of childhood brain tumors, in addition to positive affect, community integration and to a lesser extent vocational identity have been identified as important contributors to overall satisfaction with life [50]. Lower educational attainment and unemployment, among other variables, have also been identified as risk factors for psychological distress and poor health-related quality of life (HRQL) [51], highlighting the importance of attendance at school and work both early and later in the cancer survival trajectory.

In the United States and the United Kingdom, state and local school districts are required by law to provide a free, appropriate elementary and secondary education in the least restrictive environment for all young people needing special attention/education, including students with cancer or a cancer history whose medical problems might adversely affect their educational performance [52]. For those whose physical conditions place them at risk of further health problems, homebound or hospital-based education may be necessary. When possible, however, preference should be given to the regular school environment and, if this is not possible, the hospital-based school [49].

With regard to educational achievement, employment, and living situations, studies indicate that most patients and survivors are functioning well and leading normal lives [53–57]. Yet, many young adult cancer patients and survivors report having experienced restricted role function or problems at work and in daily activities, including social discrimination and rejection in employment and military opportunities [56, 58–63]. Some also experience difficulty maintaining or obtaining independent or family-based health insurance, encounter financial strain, and attain lower income levels when compared to other noncancer groups [32, 56, 58, 64, 65]. In the United States, lacking health insurance has been reported as a barrier to receiving any medical care among AYAs with cancer, as well as influencing educational and work outcomes [63, 66], further discriminating against a potentially vulnerable population.

Subsets of survivors also experience impaired achievement in education, employment, and social and family goals when compared to others [56, 62, 67–69]. Particularly, central nervous system (CNS) tumor patients/survivors and leukemia survivors treated with cranial radiation are much less likely to complete high school, attain an advanced graduate degree, or follow normal elementary or secondary school paths when compared to survivors of other cancer types and to healthy controls [62, 68, 70]. CNS tumor survivors also are more likely to be unemployed, have a health condition that affects their ability to work, and enroll in learning disabled programs [62, 71]. In the Childhood Cancer Survivor Study that monitors a multi-institutional epidemiologic cohort of over 16,000 survivors, comprised mainly of young adults, the use of special education services was reported by 23 % of survivors in comparison to only 8 % of siblings, with the greatest differences observed among female survivors who were diagnosed before age 6 years and most notably among survivors of CNS tumors, leukemia, and Hodgkin’s disease [72]. In many areas, school reintegration programs provide advocacy training for parents of adolescents with cancer. However, there is a need to create similar programs for educational and vocational efforts for young adults [40].

Literature suggests that seriously ill young people tend to become more dependent upon their parents, at least temporarily. For AYAs, this may involve regression from recently achieved independence into a prior dependent relationship. As young people with cancer try to deal with or discuss the illness with their parents, they sometimes discover that they have quite different coping strategies. Just as symmetry in coping strategies is an important factor in spousal interaction, it affects child-parent interaction as well. Parents may want to discuss issues with their children that the children do not wish to discuss, or vice versa, perhaps because doing so evokes issues or feelings that for so long have been buried in the past. Parents also may express or manifest emotional distress quite differently than their children. Some young people with cancer desire to protect their parents and not share their deepest worries with them, perhaps out of guilt for what their parents are going through or perhaps just because they can see how upset their parents are [12, 73].

Normalcy and belonging to a peer group are paramount, yet the onset of illness and treatment side effects makes the AYA patient feel and look different. The loss of normalcy in terms of appearance, body integrity and daily activities may be of greater concern for the adolescent than the potential loss of life [74]. Opportunities for socialization with healthy peers and other AYA cancer survivors have been reported as helpful in coping with cancer [22, 75]. Problems with establishing close interpersonal relationships have been reported among long-term survivors and appear to be associated with longer duration of treatment and more recent illness [76]. Gray [77] reports that cancer survivors describe improvements in social relationships (as compared to controls) but also feel greater disappointment in those relationships, suggesting that this disappointment may be a result of having higher expectations of those relationships. Indeed, a common theme arising out of survivor meetings and present in the medical literature is the notion that prior social networks may fail to provide the type or kind of support that long-term survivors seek and may even cause additional stress [78].

The transition from dependent to committed, relationships that are reciprocal and mutually supportive, has been identified as an important component of the “emerging adulthood” life stage, defined as being between age 18 and 25 years [79, 80]. Satisfying intimate relationships are an important part of HRQL and require social interaction of one form or another to develop and thrive. Although adolescents with cancer may be thought of as being more socially isolated than their healthy peers, empirical evidence does not support this assertion. In general, adolescents with cancer have been shown to be similar to peers on numerous dimensions of psychological and social functioning [81]. However, AYAs with cancer commonly experience changes in friendships and a sense of isolation from friends due to lengthy time away from home, school, or work for treatments, and many friendships may fall by the wayside over time [82, 83]. Specifically, AYAs report feeling that some friends are no longer able to relate to their life situation and get uncomfortable continuously talking with the patient about cancer, resulting in feelings of being “different” and apprehensive about forming new friendships [82, 84]. Consequently, many of these young people form (or would like to form) new friendship circles, often with other cancer patients and survivors with whom they feel can relate to their current life situation and past experience with cancer.

According to Heiney [85], studies have found that there is a lack of knowledge about the anatomy and physiology of reproduction among adolescents generally. This comes at a time when most adolescents display heightened curiosity about sexuality, and some begin to experiment with intimacy and sex. Reviewing the impact of cancer treatment on sexuality, intimacy, and relationships, Thaler-DeMers [86] suggests that the issue of sharing one’s cancer history with a new partner is particularly salient to a young adult survivor population, and Roberts et al. [15] report that relevant issues arising in a group intervention study among young adult survivors included concerns about fertility and raising children. With regard to family planning, Schover and colleagues [87] identify salient relationship-oriented concerns for young adults, including infertility, reproductive problems, desire for children in the future, sperm banking, concerns about offspring’s’ health and genetic risks, pregnancy concerns and complications, and attitudes about having children after cancer.

In the United States, approximately 1.5 million cancer survivors have almost 3 million children, and a third of these live with a parent who is beginning treatment for their cancer [88]. Parental cancer may pervade all aspects of family life with significant changes in living patterns, roles, and relationships [89], which may impact on parents’ ability to attend to both emotional and physical needs of their children [90, 91]. It is important to include child-centered interventions for AYAs to help families and children cope with the effects of parental cancer. “Yet to date, no studies have been published which evaluate child centered psychosocial interventions designed specifically for children dealing with parental cancer” (Wonders and Worries website). Children of a parent with cancer have been shown to be at risk of psychological and social difficulties [92, 93], which may in part be due to the perception of family dysfunction [94]. A recent literature review of the experience of parents with young children, following a diagnosis of cancer, identified three predominant themes, namely, being a good parent, informing their children of their own diagnosis, and maintaining routine at home [95]. Support and application of resources aimed at improving parents’ perceived lack of confidence and communicating skills when talking to their children about cancer may promote family coping and facilitate improved family functioning [96].

A recent 5-year evaluation of a program for children with parents who have cancer has demonstrated that participation has had an impact on the children’s anxiety, difficulty communicating about the illness, and disturbed sleep as well as family stress reduction (Wonders and Worries). Programs like Wonders and Worries and CLIMB Support program provide concurrent group-based programs as well as special events for parents, children, and teens. Wonders and Worries also provide bereavement support to families led by trained child life staff to help the child process their loss and express their emotions as needed.

Recent reports suggest that AYA’s needs for psychosocial support to respond to the physical social and psychological challenges faced with diagnosis and treatment of cancer are not being met [31, 97, 98], with many AYAs unaware of what psychosocial services are available [99]. Significant distress among AYAs with cancer vary, ranging from 6 to 41 % in independent cross-sectional studies with varying sample sizes, age ranges, timing of data collection, and tools utilized [97, 100–103]. In a recent longitudinal study, clinical distress was present in 27 % of AYAs in the first year following diagnosis, and its presence did not appear to be related to cancer type or gender but may be related to pre-diagnosis mental health history [103]. This is significantly higher than in noncancer patients in whom the Centers for Disease Prevention and Control reported a 3.1–4.0 % prevalence of serious psychological distress and a 8.3–10.2 % prevalence of depression among young people aged 18–44 years in the United States in 2008 and 2009 [104].

AYAs may suffer from a wide range of psychosocial adjustment difficulties, such as delayed social maturation, altered body image, mood disturbances, academic difficulties, job and insurance discrimination, increased health concerns, relationship problems, and worries about having children [105]. Comparative studies have demonstrated significantly greater psychological distress in young adult survivors of childhood cancer than in various comparative groups when measured using standardized psychometric scaling techniques [64, 73, 106].

In contrast, a number of other investigators demonstrate that in the aggregate, AYA cancer survivors score in the normal range on standardized psychometric measures and live normal social lives with no evidence of significant mental or emotional distress, thereby being quite similar to peers without a history of cancer in terms of their psychosocial adjustment and quality of life [55, 107–112].

In some instances, psychological and quality of life outcomes among young adult survivors are the same as, if not better than, among comparison populations [57, 113–116]. In a study of young adult survivors of childhood leukemia and lymphoma, Gray and colleagues [107] indicate that, compared with peers, survivors reported significantly more positive emotional health status, less negative mood or affect, a higher motivation for intimacy (i.e., thinking about others, concern for others), more perceived personal control, and greater satisfaction with control in life situations. Maggiolini and colleagues [117] showed that teenagers cured of leukemia showed a more positive and mature self-image when compared to student peers. In general, the psychosocial literature on survivors of pediatric cancer suggests that cancer universally alters the way survivors view themselves and that these alterations can be positive or negative and both positive and negative [105, 118, 119]. Salsman and colleagues [119] found that while AYAs with cancer reported poorer physical and emotional well-being than matched healthy controls, the same was not true for social well-being which was reported as higher in the AYA group. Adolescents, in particular, have reported a sense of relief upon completion of therapy but also ambivalence related to perceived loss of social ties (i.e., with other adolescents with cancer, with healthcare providers who have come to know them, with the healthcare system) and fears of life without the protective “crutch” of effective treatment [120].