Social Relations and Pediatric Cancer: The Struggles of Adolescent Cancer Patients

Magdalena Lewandowska

Over 8,000 children are diagnosed with cancer in the United States in any given year (Aldridge & Roesch, 2007; Hockenberry-Eaton, Kemp & Dilorio, 1994). Of this population, the survival rate for adolescents between the ages of 15-21 exceeds 80% (Aldridge & Roesch, 2007; Hockenberry-Eaton et al., 1994; Jones, 2008; Mays, Black, Heinly, Shad & Tercyak, 2011). For children and adolescents under the age of 19, cancer remains the fourth leading cause of death (Aldridge & Roesch, 2007; Hockenberry-Eaton et al., 1994), despite an increase in survival rates. For the purpose of this article, references to pediatric cancer patients will be limited to the adolescent age range (12-16 years old) and treatment effectiveness will refer to the continuing survival of the patients. The goal of the current literature review is to examine the role social support plays in cancer treatment effectiveness in the adolescent pediatric population. Specifically, this paper explores whether social support influences  treatment effectiveness of cancer in adolescent pediatric patients, and how social support may help reintegrate patients in remission into everyday life.
Adolescents face a variety of stressors including hormone and body changes, and changes in peer relationships. Further stressors are associated with cancer in adolescents  (e.g., the initial diagnosis, the treatment process, and life post-cancer). However, the availability of family support can increase the child’s resilience in the face of stress. Self-concept and self-esteem are increased when an adolescent comes from a stable and supportive family environment (Hockenberry-Eaton et al., 1994; Michel et al., 2010). Ensuring and maintaining an environment that optimizes growth and development during treatment has become progressively more important in recent years (Aldridge & Roesch, 2007; Hockenberry-Eaton et al., 1994). Research regarding adolescent cancer patients and their social support networks can help health professionals develop interventions that they can use, as well as educate family members and those within the patients’ social circle. Therefore, the attention must turn to fostering stable and supportive family environments in order to ensure adequate social support for the adolescent patients.

Stressors of Adolescent Cancer Patients

Stressors are operationalized as events that can make it psychologically and physically more difficult for adolescents who try to adjust to life post cancer (Aldridge & Roesch, 2007; Hockenberry-Eaton et al., 1994). Adolescent cancer patients are faced with two types of stressors: acute stressors and chronic stressors. Acute stressors are described as random events that could be frightening and painful, but did not last long, such as treatment complications, surgery, or side effects to chemotherapy (Aldridge & Roesch, 2007; Hockenberry-Eaton et al., 1994). Chronic stressors are described as day to day experiences associated with living with cancer that brought on uncertainty about the patient’s prognosis. Chronic stressors include changes in family dynamics, changes in appearance, inability to participate in school events and disruption of one’s social environment (Aldridge & Roesch, 2007; Hockenberry-Eaton et al., 1994).

Another source of chronic stress can come from the hospital environment. Some children are able to face these stressors using  a protective factor referred to as resilience, which is one’s ability to efficiently deal with stressors, meaning they are less affected by stressors in the long term and are able to cope with stressors in a healthy manner (Sarason et al., 1983; Wills & Bantum, 2012). Children who had a strong sense of support in their earlier years (regardless of health) were more likely to display resilience and be self-reliant in their adolescence (Sarason et al., 1983, Wills & Bantum, 2012). Children who lacked a sense of social support later had a hard time coping with stressors and were not able to achieve the quality of life they had prior to their diagnosis (Aldridge & Roesch, 2007; Hockenberry-Eaton et al., 1994).

Adolescents who spend extended time in the hospital are faced with the frustration of being identified as “pediatric patients” versus “adult patients” (Dunsmore & Quine, 1996, p. 40) – often times adolescents are too old for the pediatric unit but too young to stay in an adult unit. There are only a few hospitals in the United States that have units dedicated to adolescents, and a lack of these specific units can cause discomfort and frustration in adolescent patients (Dunsmore & Quine, 1996).  When placed in the pediatric unit, adolescents are surrounded by children in a setting designed to put young children at ease (e.g., colorful walls, favorite childhood TV character decals on walls, plastic play houses and slides designed for children under the age of 10). The nurses and staff are specially trained to interact with children, and older adolescents are left feeling as though the staff are treating them as children too (Dunsmore & Quine, 1996). When placed in an adult ward, adolescents risk being traumatized by the older patients, who are likely to have more advanced stages of cancer. The adolescents are left feeling frightened and depressed (Dunsmore & Quine, 1996). Both pediatric wards and adult wards can lead to the adolescent patient feeling glum and hopeless.

School becomes another social environment at risk for disruption and stress. Adolescents who return to school after treatment are faced with the stress of school work, catching up and being looked at differently by their peers for having cancer, especially if there were physical changes in the patient, such as hair loss associated with chemotherapy (Aldridge & Roesch, 2007; Hockenberry-Eaton et al., 1994).  Ignorance on behalf of the patient’s teachers and peers can add additional stress for adolescents, who expressed the desire to have the people in their schools knowledgeable about cancer and why the student now looked different upon their return to school (Aldridge & Roesch, 2007; Hockenberry-Eaton et al., 1994). The physical changes cancer and its treatment cause (e.g., hair loss, weight change, scarring) were associated with significant stress for adolescents at a time in their lives when they are already hyperaware of their bodies with puberty, which in itself comes with its own physical changes (Williamson, Harcourt, Halliwell, Frith, & Wallace, 2010). Changes in appearance for adolescents were associated with abuse and taunting from their peers, which led to reduced self-esteem, issues with social interactions, and self-induced isolation (Williamson et al., 2010). This variety of stressors offers evidence that the return to school and normalcy is fraught with obstacles.

Parents of adolescents with cancer often become overprotective of their child, which may lead them to become overbearing. This overprotectiveness works against the idea of social support and actually causes more conflict and stress within the family environment (Dunsmore & Quine, 1996). In an effort to shelter their children from the stressors of cancer, parents often withhold information from the adolescents, which leads to feelings of frustration within the patient. Adolescent patients who feel as though they have overprotective parents report feeling crowded and often wanted their own space (Decker, 2007). Research consistently shows that patients from families that openly discussed the cancer as well as treatment options had more satisfaction and felt more supported and comforted by their loved ones (Dunsmore & Quine, 1996). The main variable that acted against social support to decrease self-esteem was parental overprotectiveness (Dunsmore & Quine, 1996). Therefore, it is important to educate the adolescent patient’s social network about cancer and ways to reduce stress for the patient without adding to it. Adolescents facing these obstacles are often times helped by family, friends, and medical teams through their offered social support.

Social Support as a Construct

Social support for the adolescent patient  was seen as simply being physically present for the individual, for example, during hospital stays and treatments, as well as the existence of a network of individuals with whom they felt was there for them and did not treat them differently because of their illness (Sarason, Levine, Basham & Sarason, 1983; Wills & Bantum, 2012; Woodgate, 2006). Social support acts as a protective factor against stress, including psychological and physical stress. Overall, social support was associated with a more positive prognosis: adolescents who reported higher levels of social support were found to have higher levels of optimism and self-esteem, better adjustment to their cancer diagnosis, and less need for medication for illnesses (Decker, 2007; Sarason et al., 1983; Wills & Bantum, 2012).

Sources of Social Support

Family members. Adolescents under the age of 15 preferred to rely on their parents and did not want to partake in peer-group discussions, although there was no explanation as to why children under 15 felt this way (Dunsmore & Quine, 1996). Social support has been shown to buffer the stressors of life-threatening illnesses while increasing healthy behavior in patients and reducing harmful coping behaviors. In contrast, feeling as though there are a lack of social relationships can reduce a patient’s chances of survival (Ell et al., 1992). Adolescents identified family as the number one source of support, specifically their mothers (Decker, 2007; Dunsmore & Quine, 1996). Adolescents associated the presence of parents and family members with decreasing anxiety and helping make the patients feel connected to the outside world. Family members were less likely to make adolescents feel as though they were being treated differently because they had cancer (Decker, 2007; Dunsmore & Quine, 1996; Kliewer, Murelle, Mejia, & Torres, 2001).
When controlling for age, there was a significant correlation between the level of aggressiveness of the cancer and how much adolescents depended on their families for support; the more aggressive the cancer, the more they relied on their families (Dunsmore & Quine, 1996). In turn, this support acted as a comfort and strength for patients and led to an increase in a sense of control and self-esteem (Dunsmore & Quine, 1996). Self-esteem, which is especially important for adolescents with cancer, is the first to decline when adolescents return to school due to social factors (Williamson et al., 2010). Adolescents who had high self-esteem because of social support from their families prior to their cancer diagnoses, were more likely to maintain a high level of self-esteem throughout their treatment, and be more confident about the outcome (Hockenberry-Eaton et al., 1994).

Peers. Peers were also found to help boost self-confidence and optimism in adolescent cancer patients. An adolescent’s social support network extended outside the family to include close friends, who helped the adolescent feel connected to life outside of cancer (Woodgate, 2006). Adolescent patients reported that they wanted their friends and teachers at school to know more about their cancers, which lessened the stress of returning to school after treatment (Dunsmore & Quine, 1996). When dealing with ordinary trauma, such as violence, adolescents often turn to parents for support and information (Dunsmore & Quine, 1996). In cases of cancer, adolescents over the age of 15 preferred to take part in peer-group discussions, where they found comfort in talking with other people who were able to empathize with them because of similar experiences (Dunsmore & Quine, 1996). Peer-group discussions are beneficial to adolescent patients because they allow patients to talk about their experiences with others who offered support and validation of their feelings. Peer groups gave adolescents a different perspective on surviving cancer that could not be obtained from the parents who lack firsthand knowledge of what their child is experiencing (Kliewer et al., 2001). Peer-group discussions provided comfort and validation for adolescents.

Friends of adolescents were found to help alleviate the stressors caused by returning to school by engaging in “peer shielding” – their presence helped manage negative reactions (e.g., appearance changes that resulted in staring, teasing, questioning) while at the same time helping the adolescent adjust to new experiences that were accompanied with anxiety and self-consciousness (Williamson et al., 2010). Adolescents who were surrounded by friends with positive opinions experienced an increase in self-confidence (Williamson et al., 2010) and were able to maintain a sense of confidence. Some adolescents took the initiative to brainstorm ideas to help the students and teachers in their schools understand what the adolescent had gone through, for example, sending a before and after picture that detailed the physical changes the adolescent had experienced (Williamson et al., 2010). Adolescents whose parents worked in unison with the peers to improve the school environment added to the shielding effect and helped increase the self-esteem and resilience in the adolescent (Aldridge & Roesch, 2007; Hockenberry-Eaton et al., 1994).  In addition to family and peer support, adolescent cancer patients also experience social support from the health care professionals involved in their treatment.

Health care providers. In the absence of family and peers, adolescent cancer patients found the presence of their health care team members to be especially supportive. Adolescents valued the presence of their health care team, but only if the nurses and doctors involved in their treatment were compassionate and viewed them as more than patients (Decker, 2007). Health care professionals who showed interest in something other than their cancer diagnoses were seen as more supportive than health care professionals who were cold and detached. However, this does not mean that adolescent patients felt comfortable in confiding in their health care teams. Adolescents referred to the health care teams as sources of information, which to the adolescents was a form of support (Decker, 2007; Dunsmore & Quine, 1996). Adolescents preferred to receive their information concerning treatments directly from their physicians, as parents were seen to try to “soften the blow” by withholding information (Decker, 2007; Dunsmore & Quine, 1996, p. 52). However, for cases where parents were unable to physically be there as a support for their children, adolescents were comforted in knowing that a nurse or doctor was there for them too, which refers back to the simplest explanation of social support – just “being there” (Dunsmore & Quine, 1996; Woodgate, 2006 p. 122).

Conclusion

Social support is crucial in the lives of adolescent cancer patients. Social support increases self-confidence, adds to a sense of self-control, and positively influences prognosis while helping adolescents cope with the stressors of cancer, both during and after treatment (Dunsmore & Quine, 1996; Ell et al., 1992; Hockenberry-Eaton et al., 1994; Kazak et al., 1997; Kliewer et al., 2001; Wills & O’Caroll, 2012). Thus far, there is a wealth of research concerning the benefits of peer-groups for cancer patients to talk to other cancer patients and survivors (Hockenberry-Eaton et al., 1994; Jones, 2008; Kliewer et al., 2001). Educational programs that stress the importance of social support within an adolescent cancer patients’ network need to be developed and studied in order to determine and improve their efficacy and perhaps help them achieve more funding. Future research should examine how to increase parental social support in particular, as it has been found to be most important to adolescents during this time. Once that research is established, researchers could examine the effects of social support on adolescents of specific demographics including gender, race, and socioeconomic status. This is especially important as cancer does not discriminate who is affects and, if studied, a larger and wider range of adolescents could benefit from targeted programs that improve their social support networks.

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