Running head: SIBLINGS OF PEDIATRIC CANCER 1 Psychosocial Outcomes in Siblings of Pediatric Cancer Patients

Research in pediatric psychology has scarcely begun to investigate the psychosocial needs of siblings of pediatric cancer patients. The purpose of this literature review was to discuss the articles that have investigated the psychosocial needs of pediatric cancer patients as well as the articles that suggest promising intervention strategies to help these young individuals. The articles discussed investigated the effects on healthy-siblings during the cancer treatment, the outside factors that influence the amount of distress a sibling may suffer with, the differences in reactions and adjustment between nonbereaved and bereaved siblings, and the possible intervention strategies including increased social support, family-oriented rehabilitation programs, psychological interventions, educational interventions, and experiences in camp environments designed specifically for siblings of pediatric cancer. Much progress has been made in this domain of pediatric psychology; however, further research should be conducted to provide the maximum amount of support for siblings of pediatric cancer patients. SIBLINGS OF PEDIATRIC CANCER 3 Psychosocial Outcomes in Siblings of Pediatric Cancer Patients Numerous studies have been conducted on the psychological well-being of children treated for pediatric cancer, as well as the impact their illness has on their behavior and psychological adjustment in survivorship. While these studies have proven beneficial in helping us understand these individuals, very little research has been conducted that focuses on their siblings. The research that has been conducted with the siblings of these young cancer survivors, although small in comparison to the survivors themselves, provides information that demonstrates that these individuals experience distress and may require psychosocial support. The current review paper will overview the psychological effects on the siblings during cancer treatment, the effects of the relationships on the sibling’s ability to cope, the effects on the siblings after the child has completed cancer treatment, the impact on the sibling when the child has not survived treatment, as well as possible intervention strategies that have shown promise in aiding the siblings of pediatric cancer patients. By reviewing these areas of study on siblings, the field of pediatric psychology may be able to better understand the challenges these children face, predict the obstacles they may encounter, and provide families with promising strategies for healthier psychological functioning for each member of the family. Although relatively few studies have investigated the effects of pediatric cancer on siblings, research has shown that the siblings of pediatric cancer patients experience varying forms of distress after the patient has been diagnosed with cancer. A study conducted by Houtzager, Grootenhuis, Hoekstra-Weebers, and Last (2005) examined the quality of life (QoL) of siblings of pediatric cancer patients and variables that predict QoL. They evaluated their coping strategies and referenced the quality of health (physical problems, sleep difficulties, eating issues, etc.) for each sibling prior to the diagnosis of cancer based on the child’s and the SIBLINGS OF PEDIATRIC CANCER 4 parent’s statements. Their sample included siblings between the ages of seven and 18, with measures administered one month to eight weeks after the diagnosis. Various scales were used in this study to measure current QoL and coping strategies. In addition, the parents of the children were interviewed to determine the sibling’s health prior to the diagnosis of pediatric cancer in the family. Houtzager et al. (2005) then compared the responses from the siblings of pediatric cancer to responses from their non-cancer associated peers. The results of this study found that many of the siblings of pediatric cancer reported considerably impaired emotional and cognitive QoL. As well, over half of the siblings reported a significant decrease in positive emotions felt since the diagnosis in comparison to their peers who did not have a sibling diagnosed with cancer. They also found that the siblings whose parents reported them to have had health issues prior to the diagnosis were similarly reported to have more struggles with cognitive and motor functioning as well as more negative emotions after the diagnosis occurred. The researchers also found that siblings who were given more positive feedback about the likelihood of recovery coped with the diagnosis better and experienced better cognitive functioning as well as more positive emotions and less negative emotions than those who were not given explanations. Interesting differences between age and gender were also found in the study; older siblings experienced significantly more negative emotions than the younger siblings, while sisters tended to be less satisfied with their relationships with family members and peers in comparison to brothers. These results were found only one month after the diagnosis, thus there could be differences in such findings after more time has passed. Interestingly, Houtzager, Grootenhuis, Caron, and Last (2004) had conducted a prior study investigating the psychosocial influences on siblings after two years had passed since the SIBLINGS OF PEDIATRIC CANCER 5 diagnosis. In this study, the same age group as in the previously mentioned study was examined along with a group of peers who did not have a sibling with pediatric cancer. The sibling participants were administered two quality of life (QoL) questionnaires as well as measures of anxiety and emotional and behavioral problems. The findings from this study are interesting in comparison to the study conducted only a month or two following diagnosis. Houtzager et al. (2004) found that for the majority of individuals, most of the acute emotional distress that followed the diagnosis of cancer seems to normalize after two years passed. However, there appeared to be a subgroup of siblings who did not seem to cope as well with the illness. They discovered that nearly half of the younger siblings tended to report a lower overall QoL at this point in the survivorship process, and that nearly a third of the older siblings experienced internalizing depression, anxiety, or social withdrawal. Houtzager et al. (2004) reasoned that this may be the result of older children being more self-sufficient and able to find outside support from peers, whereas the younger siblings only have their parents and close family to turn to in their time of need. The younger siblings also tended to experience significant levels of physical health issues after the diagnosis, perhaps because the younger children are unable to fully understand the illness of the pediatric cancer patient and therefore are at a higher risk of acquiring great fears related to the illness (Houtzager et al., 2004). Although these explanations are plausible, they are speculative and further research should be conducted to investigate why some children are more resistant to the stress of having a cancer patient in the family while others are not so fortunate. Other studies with siblings of patients with cancer have investigated other psychosocial outcomes, including posttraumatic stress symptoms. Kaplan, Kaal, Bradley, and Alderfer (2013), examined a group of sibling participants between the ages of eight and 17 whose family member SIBLINGS OF PEDIATRIC CANCER 6 was within four to 38 months after the diagnosis of cancer. The participants completed two scales of PTSD symptoms and anxiety as well as a child depression inventory in order to measure the prevalence, common symptoms, and comorbidities. Over half of the sample scored in the moderate to severe range for PTS symptoms, reported feeling upset and avoiding the thoughts and conversations about the cancer, and were found to have extreme levels of arousal symptoms, with the symptoms interfering with daily functioning. In addition, they experienced comorbidity with anxiety and depression. Approximately 22 percent of the sample also satisfied criteria for full-blown PTSD based on the scale used in the study (Kaplan et al., 2013). The authors concluded that further research should be done in this area to find ways to prevent such symptoms as well as to find the best course of action for treating cancer-related PTS symptoms. While the previously mentioned studies have proven useful in identifying specific psychosocial outcomes, Sargent et al. (1995) used interviews with siblings and their parents to gain a broader understanding of how cancer affected them and their families. To meet criteria for the study, the cancer diagnosis had to have taken place six to 42 months prior to participating. During the interviews, the participants were asked nine questions. The first eight questions concerned the siblings’ thoughts and feelings towards the changes they experienced within themselves and in the family, the possible negative and positive effects of the cancer, the reactions of other siblings in the family, and the best and worst coping strategies they have found to be associated with pediatric cancer. The ninth and final question asked the sibling to provide some advice for siblings who would one day be in the same situation. The researchers found a gender by age interaction, with each group tending to have a specific area that was more difficult for them than for the other groups. When comparing the two age groups (younger children versus older children), the older siblings tended to have more SIBLINGS OF PEDIATRIC CANCER 7 positive feedback about the experience than the younger siblings, which was believed to be the result of differing maturity levels. The younger siblings seemed to struggle more than the older siblings when it came to responding to the questions, which could be due to lack of cognitive development to understand abstract concepts. However, a lack of such development could als