SEARCH

SEARCH BY CITATION

Keywords:

  • cancer;
  • psychosocial dimensions;
  • family factors;
  • social factors;
  • psychological factors

Abstract

  1. Top of page
  2. Abstract
  3. FAMILY FACTORS
  4. PSYCHOLOGICAL/EMOTIONAL FACTORS
  5. SOCIAL FACTORS
  6. CLINICAL IMPLICATIONS: PSYCHOSOCIAL ASSESSMENT AND INTERVENTION
  7. REFERENCES

Psychosocial research examining the impact of cancer on adolescents and young adults has focused mostly on domains relating to family, psychological/emotional impact and social effects. An overview of the evidence-based literature available in each of these domains is presented to highlight the trends and provide a basis for clinical application. A review of the research literature was conducted to summarize what is known regarding the psychosocial dimensions of cancer in adolescents and young adults. Key elements critical to the psychosocial adaptation of the adolescents and young adults with cancer, as well as later effects of the cancer experience, are discussed in terms of clinical implications. A case example is utilized to demonstrate the application of what has been investigated empirically in regard to psychosocial dimensions of cancer in young adults and adolescents. Studies have identified various psychosocial challenges that adolescents and young adults experience when faced with cancer. Further research, incorporating the effects of treatment stage and developmental level of the patient on specific psychosocial dimensions of the cancer experience, is needed. Evidence-based information regarding the influence and interaction of family, psychological and emotional state, and social status of adolescents and young adults with cancer can aid clinicians when developing psychosocial assessment and treatment approaches for these patients. Cancer 2006. © 2006 American Cancer Society.

All adolescents face challenges as they transition from childhood to adulthood. Emotional, cognitive, and social/developmental changes in adolescence and young adulthood impact views of self, emotional state, thinking and problem-solving, and interaction with family, peers, and others during this phase of life. The adolescent diagnosed with a malignant disease must move through this developmental process while coping with the emotional impact of the diagnosis, the therapy for cancer, and the emotional, social, and physical late effects of the disease and its treatment.

Psychosocial research examining the impact of cancer on adolescents and young adults has focused mostly on domains related to family, psychological/emotional impact, and social effects. Studies have identified various psychosocial challenges that adolescents and young adults experience when faced with cancer. However, little research exists on how different challenges impact adolescents in relation to specific developmental stages or even in relation to different types of cancer and forms of treatment. Being able to use the evidenced-based literature currently available, regarding the psychosocial dimensions of the cancer experience in adolescents and young adults, will likely aid healthcare providers in understanding the psychosocial needs of adolescents or young adults with cancer and in better planning for their care.

Elements critical for psychosocial adaptation of the adolescents and young adults faced with cancer, as well as the after-effects of the cancer experience, are summarized. The information presented is by no means an exhaustive review of the literature, but an overview of trends in findings regarding each psychosocial domain that pertain to adolescents and young adults with malignant disease. For the purpose of this overview, psychosocial dimensions of cancer in adolescents and young adults have been organized and discussed here in 3 different domains based on the areas wherein most psychosocial research in this population has been conducted: family factors, psychological/emotional factors, and social factors. The literature within each of these psychosocial domains also reflects what limited information is known regarding how the stage of treatment plays a role. Based on the trends summarized, recommendations are made to members of the healthcare team when planning psychosocial intervention with adolescents and young adults diagnosed with cancer. A case example is then provided to highlight these recommendations.

FAMILY FACTORS

  1. Top of page
  2. Abstract
  3. FAMILY FACTORS
  4. PSYCHOLOGICAL/EMOTIONAL FACTORS
  5. SOCIAL FACTORS
  6. CLINICAL IMPLICATIONS: PSYCHOSOCIAL ASSESSMENT AND INTERVENTION
  7. REFERENCES

Research examining adolescents and young adults with cancer suggests that certain familial factors are associated with better psychological adjustment for the patient. Using a mixed child and adolescent oncology sample, Barrera and colleagues1 found that maternal adjustments along with child temperament were the best predictors of psychological adjustment for the newly diagnosed patient. Unfortunately, there appears to be little else in the way of research examining the impact of family, specifically with adolescents or young adults newly diagnosed with cancer.

Adolescents in active treatment have reported that, overall, their mothers and friends were the best sources of support.2, 3 Adolescents and young adults with mothers demonstrating lower maternal distress4 appear themselves to demonstrate better overall psychological adjustment. Other qualities, such as flexibility of the family and the family's attempts to bring normalcy to the adolescent or young adult's life, were also found to be vital for better psychological adjustment.3 Although some adolescents suggest through qualitative interviews that factors such as family flexibility may bring them a sense of support while they face cancer treatment,3 others reported that their family relationships could be sources of turmoil, depending on the type of stressor at hand.5 This may suggest that both the parent's and the adolescent's understanding of the circumstances in which parental support/involvement is most helpful might actually mitigate parent–child friction in regard to certain issues surrounding the illness.

For example, a teen with cancer may feel that a parent can be a good source of social support to him/her if he/she has worries or concerns regarding a boyfriend's or girlfriend's reactions to his/her illness. But, the same teen may experience less feelings of support from that same parent if the teen preferred to cope with a health-related concern independently (e.g. making decisions about when to take breaks if he/she is fatigued).

Similar to those in active treatment, adolescent and young adult childhood cancer survivors who perceived the presence of family cohesion and family adaptability were also more likely to demonstrate good adjustment after treatment.6 Teachers of cancer survivors, who reported on the everyday functioning of these adolescents, also noted that a sense of family cohesion indicated better psychological adjustment in their students.7 Maternal influences, especially, have been shown to play an important role in the family functioning of adolescents and young adult survivors. Less encouragement from fathers and greater involvement of mothers during treatment for cancer in childhood were related to an increased impairment in young adult survivors' relationships outside their relationships with family members.8 Madan-Swain et al.9 found that mothers of cancer survivors primarily viewed their family functioning style as rigid and used social withdrawal or avoidant coping strategies when presented with a hypothetical scenario regarding their teen's cancer experience. Although this means of coping (e.g. avoidant coping) may have been adaptive (as pointed out by the authors) in attempting to deal with the myriad of stressors related to the initial diagnosis and treatment of their child, this style of coping, if used by families when the adolescent is off-treatment (e.g. using avoidant coping–keeping the adolescent from returning to school), may hinder the developing teen from achieving certain milestones (e.g. developing social skills commensurate with adolescent peers).10

Other studies11–13 that have examined adolescent cancer survivors diagnosed with posttraumatic stress disorder (PTSD) also have demonstrated the impact of maternal influences. According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV),14 PTSD, a type of anxiety disorder triggered by experiencing or witnessing a traumatic event, can include distressing symptoms such as intrusive thoughts, avoidant behavior associated with triggers related to the trauma, and signs of heightened arousal. In the 1998 study by Pelcovitz et al., most adolescent cancer survivors diagnosed with PTSD also had mothers with PTSD and tended to view those mothers with PTSD as more chaotic. Moreover, adolescent PTSD and greater levels of family conflict were shown to be associated with a foreclosed identity status (which typically takes the form of adopting a family member's identity) in adolescent survivors of childhood cancer.12 According to Madan-Swain et al.12 this suggests that PTSD symptoms may further create a more rigid, ‘rule-bound’ family functioning style, due to a fear of retraumatization which, in turn, minimizes the chances of the adolescent developing his/her identity.

Family Factor: Recommendations

Utilizing what is known regarding the influence of family relationships on the adjustment of adolescents and young adults with cancer, healthcare teams can have frank conversations with them and their families regarding their fears, while laying out choices about treatment and adjunctive services in a preventive manner. In the research literature, reliance primarily on parental report appears to be the norm for exploring factors important to address in psychosocial treatments for adolescents. However, in practice, bringing the adolescent into the conversation as much as possible is vital for empowering him/her during this vulnerable time. Focus groups involving adolescents and young adults with cancer have noted particularly the importance of communication among family members regarding the illness and the adolescent's need to be heard by the healthcare team.2, 15, 16 For those patients who are young adults, options regarding the level of family involvement in conversations regarding treatment and emotional support should be presented. If 18 years represents the legal age of adulthood, then the young adult patient and survivor must sign all consents for treatments himself/herself and provide permission for other family members to be present during discussions or treatment. These new legal privileges can be a ‘rite of passage’ for adolescents who have been in a treatment mode, allowing them the opportunity to announce their new developmental status, privileges, and responsibilities.

In clinical settings, members of the healthcare team can look out for emerging family risk factors which have been identified empirically: maternal distress, maternal PTSD (or symptoms of PTSD), as well as rigid family functioning and coping styles. Kazak et al.'s17 family systems approach for pediatric psychosocial intervention suggests that there are “three major tasks that families face every day (while their child is sick in the hospital): 1) soothing themselves to handle emotional challenges, 2) developing trusting relationships to ensure effective collaboration over the course of illness and treatment, and 3) managing conflict within the family and between the family and others (e.g. the medical team).” With this approach in mind, healthcare professionals can target presenting risk factors (e.g. PTSD symptoms, maladaptive coping) preventatively and quickly before the family and patient take a downward spiral. Focused, educational therapies, such as the Maternal Problem-Solving therapy for mothers of pediatric cancer patients,18 have been designed to teach mothers of newly diagnosed patients how to cope with the various stages of their child's illness. These can be incorporated to relate to parents of adolescents and young adults, focusing on developmental-specific stressors (e.g. how to talk to the teen about body image issues, how to help empower the adolescent through reinforcing appropriate self-reliant behaviors).

Additionally, if it is known that there is a family history of PTSD or family dysfunction before the cancer diagnosis, special attention can be paid to the adolescent or young adult to prevent further iatrogenic trauma. Interventional approaches, such as the Ackerman/Memorial Sloan Kettering program19 that emphasizes the stage of cancer treatment in implementation of psychosocial support, has used a family systems approach in aiding adolescents and their families in adjusting to the transition from an active treatment to an off-treatment phase. The rationale behind this stage-of-treatment approach for intervening with families of adolescents is that the active treatment stage reflects a ‘crisis’ phase, while the off-treatment stage resembles the psychological phenomenon of chronic illnesses (i.e. fear of reccurrence, interruptions in life activities, etc.), suggesting that families experience very different stressors surrounding the young adult depending on what stage of treatment he/she is undergoing. No matter the stage of treatment, for the adolescent or young adult encouraging the family to maintain a ‘normal’ environment and reinforcing flexibility in family functioning can ultimately facilitate the patient's coping with his/her illness.

PSYCHOLOGICAL/EMOTIONAL FACTORS

  1. Top of page
  2. Abstract
  3. FAMILY FACTORS
  4. PSYCHOLOGICAL/EMOTIONAL FACTORS
  5. SOCIAL FACTORS
  6. CLINICAL IMPLICATIONS: PSYCHOSOCIAL ASSESSMENT AND INTERVENTION
  7. REFERENCES

The psychological ramifications of a cancer diagnosis can differ depending on the developmental level of the adolescent or young adult as well as his/her stage of treatment for cancer. Compared with younger children, age can be either a risk or a protective factor. Specifically, a higher cognitive ability that is associated with a higher developmental age can either be a resource or hindrance to the adolescent with cancer. The older the adolescent is when diagnosed, the more perceived control (i.e. one's personal sense of control over the stressor) he/she has over coping with the illness.20 Thus, the adolescent is able to demonstrate a larger variety of coping strategies and actively attempt to alter his/her environmental stressors.21 For example, a 22-year-old man with Hodgkin lymphoma has had a lifetime of personal experiences wherein he has been able to practice various coping strategies through trial and error. Conversely, increased age may act as a risk factor for psychological distress. Barrera et al.1 found an association between age and health-related quality of life (HRQL), such that the older the age of the adolescent, the poorer the HRQL. Similarly, the older the adolescent is, the higher the intensity of symptoms experienced.22 These data suggest that the older the child is, the more likely he/she will have the cognitive abilities needed to interpret health status information, prompting the provision of such information to the teen or young adult.23 In turn, this may create a greater pool of external stressors for that patient. The negative net product of this may be that such a wealth of health information may increase awareness of symptoms leading to greater symptom expression. In addition to age, cognitive ability (no matter what the chronological age of the adolescent or young adult might be) should be considered when assessing emotional functioning. Premorbid cognitive limitations or neurocognitive deficits incurred as a side effect from cancer or its treatment can impact heavily on how these youth process thoughts, feelings, and behaviors.24

Stage of treatment may also affect the psychological resiliency of young people diagnosed with cancer. While in treatment, adolescents with cancer demonstrate more coping strategies than typical peers.25 However, in adolescent cancer survivors, higher stress levels predicted more psychological distress and lower self-esteem, after controlling for certain demographic and medical variables (e.g. age and diagnosis).22 Pendley et al.26 found that the longer the adolescents were off treatment, the more they perceived problems related to self-worth, social anxiety, and greater negative perceptions of body image (although observers did not rate them as less attractive). Reasons for this change in self-perception over time by such survivors have been debated: Is it that the patient's problems are truly becoming worse over time, or was the patient in an ‘adaptive-denial’ mode of coping with his/her problems during treatment? Or maybe, as time progressed, the patient developed a ‘response-shift’ (a change of internal standards or values that affect one's conceptualization of past quality of life27). This example of the discrepant perception of stress and how one copes with it while on treatment versus off treatment may point to the need for further investigation to test the hypothesis that a ‘crisis mode’ may prompt better coping skills and a more positive perception of mood than one perceives after treatment.

Although there appears to be some relationship between length of time off treatment and greater perception of psychosocial problems,26 in psychological outcome studies conducted by the Childhood Cancer Survivor Study (CCSS)28–30 (the largest epidemiological research cohort study of childhood cancer survivors in North America), most survivors reported that symptoms of depression, anxiety, or somatic distress did not pose problems in their daily life. Compared with their sibling controls, survivors of childhood brain cancer were found to be at increased risk for reporting psychological symptoms, but this was considered a relatively small high-risk group.28 After accounting for variables that have a propensity to be risk factors for psychological distress in the general population, brain cancer survivors tended to report more symptoms of distress (especially depression) compared with a group of siblings. When major sociodemographic and socioeconomic variables, as well as physical health variables, were controlled for, disease- and treatment-related variables (e.g. type of brain tumor, exposure to cranial radiation and chemotherapy) were not associated significantly with measures of distress. Although diagnosis during adolescence was shown to be a risk factor for somatic distress during young adulthood, the adolescent's age at diagnosis did not appear to be a risk factor for negative psychological symptoms in survivors of childhood brain tumors. Moreover, for brain cancer survivors, there appeared to be no significant relationship between age at diagnosis and levels of psychological distress. Risk factors for psychological distress (which were defined as equivalent to those in the general population) in brain cancer survivors included being female and coming from a low socioeconomic status.

For survivors of lower-extremity bone tumors in the CCSS cohort, being female, having a lower educational level and older current age seem to influence perception of quality of life (on domains of physical, psychological, social, and spiritual well-being).29 When the psychological outcomes of survivors of leukemia, Hodgkin lymphoma and non-Hodgkin lymphoma were studied,30 it was found that they demonstrated a significantly increased risk for reporting symptoms of depression and somatic distress, and that intensive chemotherapy heightened this risk. Interestingly, other factors such as gender and socioeconomic status, that were associated with psychological distress in survivors of other cancers, did not play a significant role in this survivor population. Given these important data, it would be beneficial for future research to examine more closely the pathophysiology of the various cancer diagnoses and their varied effects on the psychological dimensions of young adult cancer survivors.

Psychological/Emotional Factors: Recommendations

In translating what is known empirically into clinically useful interventions, significant weight should be placed on age and developmental level when examining the psychological and emotional variables affecting an adolescent or young adult patient with cancer. Assessing the cognitive-developmental level will be helpful in determining the most effective method for psychosocial intervention. Age at diagnosis and the subsequent treatment may affect mental and cognitive functioning, which in turn, affects the adolescent's and young adult's perception of stressors and coping skills. Premorbid coping patterns (if they can be recalled by the patient and/or family members) may be important clues in understanding present coping patterns.

In the area of psychological and emotional functioning, the most crucial source of information is the patient. In some cases, it might be helpful to ask the adolescent how he/she feels the diagnosis has changed how he/she handles and copes with information. However, in other cases, it may be necessary to determine how much of the information is helpful for the adolescent to know (e.g. if he/she has shown discomfort with certain information regarding his/her illness and is cognitively limited due to treatment effects, it may be wise to refrain from disclosure of excessive medical information). Although gathering information from multiple informants is useful, adolescent and young adult cancer patients who are at greater risk for ‘missing-out’ on certain developmental milestones (e.g. delayed identity development and individuation)10 may feel more empowered and benefit from being asked direct questions relating to their psychological and emotional well-being. Being empowered by making decisions and having access to knowledge regarding one's cancer treatment can increase one's internal locus of control (or ability to have control over one's environment), which in turn may safeguard adolescent and young adult treatment compliance.2, 22 In a study by Eapen et al.,31 parents and their children who were diagnosed with cancer presented discrepant ratings on measures of the effects of chemotherapy on the child's physical appearance and social acceptance, such that the child tended to view his/herself as a burden to others socially as well as seeing elements of his/her appearance as unattractive, while parents did not see these elements in their children. This finding has implications for therapeutic intervention in the context of cognitive therapy. Specifically, the discrepancy in perception could be used to challenge children's negative views of themselves to improve self-esteem.31 This finding also has implications regarding the utilization of parental report in examining what ‘true’ psychological effect treatment has on the adolescent/young adult patient.

The psychological stressors affecting young adults with cancer and the after-effects of treatment may differ significantly from those experienced by adolescents.32 A support group intervention for young adults coping with cancer, conducted by Roberts et al.,33 revealed that this group has unique concerns specific to their stage in life (e.g. worries regarding adult relationship issues, fertility and raising children, financial concerns). Although psychological well-being improved as a result of participation in the intervention, changes in coping mechanisms and overall quality of life did not. This suggests that the immediate stressors these young adults are experiencing (e.g. relationship issues, financial concerns) may be alleviated by the encouraging words and the problem solving that takes place in a support group. However, preventative work needed to instill adaptive coping skills at an early age may facilitate achieving the overall quality of life strived for in adulthood.

SOCIAL FACTORS

  1. Top of page
  2. Abstract
  3. FAMILY FACTORS
  4. PSYCHOLOGICAL/EMOTIONAL FACTORS
  5. SOCIAL FACTORS
  6. CLINICAL IMPLICATIONS: PSYCHOSOCIAL ASSESSMENT AND INTERVENTION
  7. REFERENCES

For those adolescents in active treatment who frequently miss school, cognitive deficits appear more likely and tend to contribute to difficulties with social skills.7, 34, 35 For others, there may be an inclination to feel anxious about ‘fitting into’ their peer group and perceiving their social abilities in a negative light,15, 36, 37 as well as a tendency to think that their social abilities are far worse than what is actually observed by others. Specifically, when healthy young adolescents were asked to report their perception of a hypothetical peer undergoing active treatment for cancer, they gave higher ratings of acceptance for the peer with cancer than for a healthy control who was rated also. Additionally, peers with higher self-reported ratings of empathy viewed the young adolescents with cancer more favorably.38 This type of evidence, which indicates that those with empathy are more accepting of the peer with cancer, further supports the widespread use of school re-integration/re-entry programs,39–41 which, by design, include in-school presentations utilized to educate and promote empathy in students and staff on issues related to the student with cancer.

Developmental differences not only play a role in the social issues and social skills of adolescents with cancer, but are reflected also in the peers of these patients. In other words, there are age differences in the type of support and help adolescents may offer a peer or friend: a 13-year-old may offer a friend support and comfort by going out for a frozen yogurt, while a 16-year-old may have a heart-to-heart talk and share experiences with a friend in need of help. These age differences in providing social support may contribute to the type of social support to which the teen in active treatment for cancer gravitates. Adolescents with cancer viewed close friends as a good social support, while preadolescents with cancer thought of their teachers as a better source of social support.10 Adolescents in active treatment, who preferred being with adults and teachers rather than their peer group, explained that they felt that the adults had more life experiences than their peers15 and thus were better able to relate to their stresses.

A similar story unfolds for adolescent cancer survivors regarding their self-perception of social skills. Although such survivors reported less than half as many social activities as did their healthy controls,26 and have been rated more socially isolated by their peers, no significant differences were found between cancer survivors and a comparison peer group on measures of social acceptance.36 Academic functioning of adolescent survivors has been shown to predict social skill functioning as rated by parents and teachers,7 suggesting that poorer cognitive abilities and/or lower grades due to poor attendance can affect not only how adolescent survivors are perceived by their peers but may also hinder social development. According to CCSS data, this same trend occurred in young adult survivors when compared with their sibling controls. Survivors were less likely to graduate from high school; however, when they received special education, their risk level was equal to that of their siblings who were also receiving special education services.41 Haupt et al.42 reported similar findings in a retrospective cohort study of childhood cancer survivors who were more likely to be placed in special education and/or programs for learning disabilities than their sibling controls, yet were able later to overcome these difficulties. Dose of cranial radiotherapy and age at diagnosis were found to be the most critical risk factors for educational difficulties.

In regard to other social variables, young adult survivors of childhood cancer demonstrate greater impairments in friendships and romantic relationships than controls.8 Some factors, such as the tendency to achieve individuation from family later in life (e.g. living on one's own, financial independence) and development of first romantic relationships at an older age, have contributed to an overall achievement of social goals later in life when compared with healthy cohorts.43–45 Little has been written about social skills intervention for this young adult survivor group; however, psychosocial treatment options appear to be sparse in general for young adults who are survivors of any type of traumatic childhood illness.

Social Factors: Recommendations

Treatment options can directly or indirectly enhance the social skills and social abilities of adolescents and young adults with cancer. School re-integration interventions can greatly boost the self-esteem of these patients and provide reassurance to their parents, as well as education to school staff and peers when the adolescent with cancer returns to school. Healthcare professionals can provide periodic checks regarding the teen or young adult's future orientation (e.g. keeping goals practical/realistic while providing hope) and what future career plans are desired. These checks regarding future plans and social goals may take the form of focusing on smaller, present tasks (dependent on prognosis, stage of treatment, and physical and cognitive functioning) to facilitate the quality of life the adolescent or young adult is most comfortable achieving. Although a structured social skills training (especially for adolescents/young adults with iatrogenic neurocognitive deficits46) may not be needed for every patient, those who would benefit from such therapy should be taught using examples of social stressors specific to their individual developmental age and treatment stage.

CLINICAL IMPLICATIONS: PSYCHOSOCIAL ASSESSMENT AND INTERVENTION

  1. Top of page
  2. Abstract
  3. FAMILY FACTORS
  4. PSYCHOLOGICAL/EMOTIONAL FACTORS
  5. SOCIAL FACTORS
  6. CLINICAL IMPLICATIONS: PSYCHOSOCIAL ASSESSMENT AND INTERVENTION
  7. REFERENCES

Psychosocial interventions for adolescents and young adults with cancer have emphasized, in varying degrees, the roles that family, psychological/emotional, and social factors have played in the patient's coping with cancer and/or its later effects. These interventions have been encouraging, yet too few have incorporated the developmental and functional level of the adolescent and young adult as well as the patient's current stage of treatment in a cohesive approach. Ideally, a method of assessment and intervention that considers evidence-based information regarding the various dimensions of the adolescent's or young adult's unique psychosocial experience in dealing with cancer can best direct the healthcare team's psychosocial intervention efforts.

Case Example

For adolescents and young adults coping with cancer, utilizing assessment approaches and intervention based on trends in the research described could facilitate the healthcare provider in considering what psychosocial treatment planning needs to take place. For instance, in Alice's case, a 19-year-old with acute lymphoblastic leukemia on active treatment, using information in the research literature to develop an evidence-based psychosocial assessment and intervention plan helped organize the plethora of important details regarding her unique case into a clinically effective treatment:

Family factors

Her mother is highly anxious and keeps her at home even when the physician says it is fine for her to go out once in a while. Alice and mother are in a ‘crisis mode,’ researching all available options, and her mother transports her back and forth from the hospital. Although it has been a year since she was diagnosed, it was a shock to her and her family; they are still coping with the news. She has a close relationship with her mother (her parents are divorced and she rarely sees her father), yet makes various decisions about her life (e.g. choosing where to go to college, having older friends and how to baby-sit her 2 younger sisters) independently from what her mother might advise. Alice voices feeling anxious whenever her mother becomes anxious about her treatment.

Individual psychological/emotional factors

Alice copes best when she has all the information in front of her. Premorbid functioning: Alice was a straight-A student through high school before she was diagnosed 1 year ago. Functional/developmental level: she is an independent young adult and is used to taking care of others and making decisions (e.g. she was the president of the outdoor adventure club and baby-sat frequently for her 2 younger sisters). Current cognitive/emotional level: she is both cognitively and emotionally high functioning. When she is not speaking with her mother about her medical treatment plan and the on-line materials on various cancer trials, she spends most of her time reading travel magazines, thinking about and planning trips she might take someday. She is extremely articulate about her emotions and known in the hospital for carrying on long conversations with staff about the existential meaning of her pain and other symptoms.

Social factors

Most of her friends are in their late 20s and consist of hospital staff. Alice is still coping with all the adjustments of her life ‘being interrupted’ (e.g. deferred college enrollment). She has withdrawn from almost all of her ‘normal’ activities (e.g. socializing with friends from the outdoor adventure club and participating in academic activities).

In this example of ‘Alice,’ utilizing what is known from the research literature regarding the influence of family factors, psychological/emotional variables, and social factors can aid healthcare professionals in delineating the major psychosocial issues confronting Alice during her battle with cancer and providing an evidence-based guide for a psychosocial treatment plan. Regarding the influence of family factors, her mother's anxiety and potentially rigid style (e.g. keeping her from going out at all) of coping with the illness might be addressed by using a maternal problem-solving therapy approach. Alice is in active treatment; however, psychologically, she and her mother appear to be both coping with the illness as if she has been newly diagnosed as well as in the active treatment stage. Alice's and her family's perception of her condition and the actual stage of treatment she is undergoing should be taken into consideration seriously when conducting any psychosocial intervention with this family. In terms of her psychological/emotional state, Alice could be given the choice, since she is legally an adult, for when she would like her family to be present during certain medical procedures. Alice could also be given articles to read regarding her treatment, since she copes better when she is provided with all the information. Alice is high functioning and was so before her diagnosis. Cognitively, it would be important to keep her mind active and challenged. Developmentally, she is a young woman who appears to have a solid sense of who she is, what she likes, and her need for independence, all of which should be taken into account in the entire approach to her treatment. Socially, Alice may appreciate having older friends who are more mature and can better appreciate her current life circumstance; however, it may be beneficial to encourage Alice and her family to plan visits with old friends she has not seen because of hospital time or being homebound.

In light of the progress made in understanding the psychosocial issues that adolescents and young adults with cancer face, there still appears to be much ground to cover in determining what influential variables affect the day-to-day as well as long-term psychological well-being of young cancer patients. Methodological issues in examining this sensitive topic, as well as intricacies inherent in exploring how different developmental tasks at different developmental stages impact the method of treatment and type of disease, have made studying the psychosocial factors of cancer in young people a challenging and worthy endeavor.

REFERENCES

  1. Top of page
  2. Abstract
  3. FAMILY FACTORS
  4. PSYCHOLOGICAL/EMOTIONAL FACTORS
  5. SOCIAL FACTORS
  6. CLINICAL IMPLICATIONS: PSYCHOSOCIAL ASSESSMENT AND INTERVENTION
  7. REFERENCES
  • 1
    Barrera M, Wayland L, D'Agostino NM, Gibson J, Weksberg R, Malkin D. Developmental differences in psychological adjustment and health-related quality of life in pediatric cancer patients. Child Health Care. 2003; 32: 215232.
  • 2
    Ritchie MA. Psychosocial nursing care for adolescents with cancer. Issues Compr Pediatr Nurs. 2001; 24: 165175.
  • 3
    Kyngas H, Mikkonen R, Nousiainen EM, et al. Coping with the onset of cancer: Coping strategies and resources of young people with cancer. Eur J Cancer Care. 2001; 10: 611.
  • 4
    Manne S, Miller D. Social support, social conflict, and adjustment among adolescents with cancer. J Pediatr Psychol. 1998; 23: 121130.
  • 5
    Stern M, Norman SL, Zevon MA. Adolescents with cancer: Self-image and perceived social support as indexes of adaptation. J Adolesc Res. 1993; 8: 124142.
  • 6
    Rait DS, Ostroff JS, Smith K, Cella DF, Tan C, Lesko LM. Lives in a balance: Perceived family functioning and the psychosocial adjustment of adolescent cancer survivors. Fam Process. 1992; 31: 383397.
  • 7
    Newby WL, Brown RT, Pawletko TM, Gold SH, Whitt K. Social skills and psychological adjustment of child and adolescent cancer survivors. Psycho-oncology. 2000; 9: 113126.
  • 8
    Hill J, Kondryn H, Mackie E, McNally R, Eden T. Adult psychosocial functioning following childhood cancer: The different roles of sons' and daughters' relationships with their fathers and mothers. J Child Psychol Psychiatry. 2003; 44: 752762.
  • 9
    Madan-Swain A, Brown RT, Sexson SB, Baldwin K, Pais R, Ragab A. Adolescent cancer survivors: Psychosocial and familial adaptation. Psychosomatics. 1994; 33: 453459.
  • 10
    Daum AL, Collins C. Failure to master early developmental tasks as a predictor of adaptation to cancer in the young adult. Oncol Nurs Forum. 1992; 19: 15131518.
  • 11
    Pelcovitz D, Libov BG, Mandel F, Kaplan S, Weinblatt M, Septimus A. Posttraumatic stress disorder and family functioning. J Trauma Stress. 1998; 11: 205221.
  • 12
    Madan-Swain A, Brown RT, Foster MA, et al. Identity in adolescent survivors of childhood cancer. J Pediatr Psychol. 2000; 25: 105115.
  • 13
    Kazak AE, Alderfer M, Rourke MT, Simms S, Streisand R, Grossman JR. Post traumatic stress disorder and posttraumatic stress symptoms in families of adolescent childhood cancer survivors. J Pediatr Psychol. 2004; 29: 211219.
  • 14
    American Psychiatric Association. Diagnostic and Statistical Manual for Mental Disorders. 4th edn. Washington, DC: American Psychiatric Association; 1994.
  • 15
    Palmer L, Erickson S, Shaffer T, Koopman C, Amylon M, Steiner H. Themes arising in group therapy for adolescents with cancer and their parents. Int J Rehabil Health. 2000; 5: 4354.
  • 16
    Lockhart IA, Berard MF. Psychological vulnerability and resilience to emotional distress: A focus group study of adolescent cancer patients. Int J Adolesc Med Health. 2001; 13: 221229.
  • 17
    Kazak AE, Simms S, Rourke MT. Family systems practice in pediatric psychology. J Pediatr Psychol. 2002; 27: 133143.
  • 18
    Varni JW, Sahler OJ, Katz ER, et al. Maternal problem-solving therapy in pediatric cancer. J Psychosoc Oncol. 1999; 16: 4171.
  • 19
    Ostroff J, Ross S, Steinglass P. Psychosocial adaptation following treatment: A family systems perspective on childhood cancer. In: BaiderL, CooperCL, Kaplan-DeNoorA, eds. Cancer and the Family. 2nd edn. New York: Wiley; 2000: 155173.
  • 20
    Sorgen KE, Manne SL. Coping in children with cancer: Examining the goodness-of-fit hypothesis. Child Health Care. 2002; 31: 191207.
  • 21
    Jamison RN, Lewis S, Burish TG. Cooperation with treatment in adolescent cancer patients. J Adolesc Health. 1986; 7: 162167.
  • 22
    Varni JW, Katz ER, Colegrove R, Dolgin M. Perceived stress and adjustment of long-term survivors of childhood cancer. J Psychosoc Oncol. 1994; 12: 116.
  • 23
    Claflin CJ, Barbarin OA. Does telling less protect more? Relationships among age, information disclosure and what children with cancer see and feel. J Pediatr Psychol. 1991; 16: 169191.
  • 24
    De Clercq B, De Fruyt F, Koot HM, Benoit Y. Quality of life in children surviving cancer: A personality and multi-informant perspective. J Pediatr Psychol. 2004; 29: 579590.
  • 25
    Derevensky JL, Tsanos AP, Handman M. Children with cancer: An examination of their coping and adaptive behavior. J Psychosoc Oncol. 1998; 16: 3761.
  • 26
    Pendley JS, Dahlquist LM, Dreyer Z. Body image and psychosocial adjustment in adolescent cancer survivors. J Pediatr Psychol. 1997; 22: 2943.
  • 27
    Schwartz CE, Feinberg RG, Jilinskaia E, Applegate JC. An evaluation of a psychosocial intervention for survivors of childhood cancer: Paradoxical effects of response shift over time. Psychooncology. 1999; 8: 344354.
  • 28
    Zebrack BJ, Gurney JG, Oeffinger K, et al. Psychological outcomes in long-term survivors of childhood brain cancer: A report from the childhood cancer survivor study. J Clin Oncol. 2004; 22: 9991006.
  • 29
    Nagarajan R, Clohisy DR, Neglia JP, et al. Function and quality-of-life of survivors of pelvic and lower extremity osteosarcoma and Ewing's Sarcoma: The childhood cancer survivor study. Br J Cancer. 2004; 29: 18581865.
  • 30
    Zebrack BJ, Zeltzer LK, Whitton J, et al. Psychological outcomes in long-term survivors of childhood leukemia, Hodgkins disease and non-Hodgkin's lymphoma: A report from the childhood cancer survivor study. Pediatrics. 2002; 110: 4252.
  • 31
    Eapen V, Revesz T, Mpofu C, Daradkeh T. Self-perception profile in children with cancer: Self versus parent report. Psychol Rep. 1999; 84: 427432.
  • 32
    Zebrack BJ, Chesler MA. Quality of life in childhood cancer survivors. Psychooncology. 2002; 11: 132141.
  • 33
    Roberts CS, Piper L, Denny J, Cuddeback G. A support group of intervention to facilitate young adults' adjustment to cancer. Health Soc Work. 1997; 22: 133141.
  • 34
    Challinor J, Miaskowski C, Moore I, Slaughter R, Franck L. Review of research studies that evaluated the impact of treatment for childhood cancers on neurocognition and behavioral and social competence: Nursing implications. J Soc Pediatr Nurs. 2000; 5: 5787.
  • 35
    Armstrong FD, Mulhern RK. Acute lymphoblastic leukemia and brain tumors. In: BrownRT, ed. Cognitive Aspects of Chronic Illness in Children. New York: Guilford; 1999: 4777.
  • 36
    Noll RB, Bukowski WM, Davies HW, Koontz K. Adjustment in the peer system of adolescents with cancer: A two-year study. J Pediatr Psychol. 1993; 18: 351364.
  • 37
    Ishibashi A. The needs of children and adolescents with cancer for information and social support. Cancer Nurs. 2001; 24: 6167.
  • 38
    Gray CC, Rodrigue JR. Brief report: Perceptions of young adolescents about a hypothetical new peer with cancer: An analog study. J Pediatr Psychol. 2001; 26: 247252.
  • 39
    Katz ER, Rubenstein CL, Hubert NC, Blew A. School and social reintegration of children with cancer. J Psychosoc Oncol. 1988; 6: 123140.
  • 40
    Katz ER, Varni JW, Rubenstein CL, Blew A. Teacher, parent, and child evaluative ratings of a school reintegration intervention for children with newly diagnosed cancer. Child Health Care. 1992; 21: 6975.
  • 41
    Mitby PA, Robison LL, Whitton JA, et al. Utilization of special education services and educational attainment among long-term survivors of childhood cancer: A report from the childhood cancer survivor study. Cancer. 2003; 97: 11161126.
  • 42
    Haupt R, Fears TR, Robison LL, et al. Educational attainment in long-term survivors of childhood acute lymphoblastic leukemia. JAMA. 1994; 272: 14271432.
  • 43
    Bonman KK, Bodegard G. Life after cancer in childhood: Social adjustment and educational and vocational status of young- adult survivors. J Pediatr Hematol Oncol. 2004; 26: 354362.
  • 44
    Chang PH, Nesbit ME, Youngren N. Personality characteristics and psychosocial adjustment of long-term survivors of childhood cancer. J Psychosoc Oncol. 1987; 5: 4358.
  • 45
    Koocher GP, O'Malley JE. The Damocles Syndrome: Psychosocial Consequences of Surviving Childhood Cancer. New York: McGraw-Hill; 1981.
  • 46
    Barrera M, Shaw AK, Speechley KN, Maunsell E, Pogany L. Educational and social late effects of childhood cancer and related clinical, personal, and familial characteristics. Cancer. 2005; 104: 17511760.