Thriving Beyond Surviving: An Examination of the Role Support Groups Play in Enhancing Later Cognitive and Social Development of Pediatric Cancer Patients

Adult survivors of pediatric cancer are at risk of developing “late effects” which are deficiencies in physical, cognitive, and/or social functioning that are usually due to longterm cancer treatment and hospitalization at a young age. These late effects can significantly impact survivors’ well-being and prevent them from leading successful, independent lives. The aim of our research was to investigate whether participation in cancer-related support groups could lessen the impact of late effects. Specifically, we examined whether the degree of engagement with cancer-related support groups was related to the level of cognitive and social functioning in adult pediatric cancer survivors. Through an online questionnaire, we assessed the cognitive ability and social development of 30 adult survivors who had participated in cancer-related support groups. We compared survivors’ scores with published cognitive and social functioning data from the general pediatric cancer survivor population and the general adult population. We also correlated their scores with a measure of their involvement with support groups. Results demonstrated that support group engagement was negatively associated with IQ levels (r(15) = -. 477, p = . 053), marriage status (r(21) = -. 413, p = . 05), and life satisfaction (t(28) = -2.149, p = . 04), and that cognitive late effects were apparent among adult survivors (Shipley-Hartford: t(18) = -2.16, p = . 044, Synonym Antonym: t(19) = 2.854, p = 0.01). Survivors reported moderately high engagement with their support groups and believed that their groups offered restorative benefits (M = 23.09, s = 4.36). Implications of these results include that support groups should continue to be utilized as a means of survivor therapy, and support group administrators should be made aware of THRIVING BEYOND SURVIVING 3 the impact of late effects so that they may implement efforts to help mediate their influence. THRIVING BEYOND SURVIVING 4 Thriving Beyond Surviving: An Examination of the Role Support Groups Play in Enhancing Later Cognitive and Social Development of Pediatric Cancer Patients Across the United States, tens of thousands of children are diagnosed with cancer every year (“Key Statistics for Childhood Cancers”, 2016). Fortunately, due to many modern medical advancements, almost eighty percent of these children are able to combat this ordeal and survive into adulthood (“Key Statistics for Childhood Cancers”, 2016). Some pediatric cancer survivors live long, healthy lives after their treatment is completed, but many other patients develop what have come to be known as ‘late effects’. These late effects are deficiencies in physical, cognitive, and/or social functioning that are usually due to long-term cancer treatment and hospitalization (Brinkman et al, 2016). However, these effects often do not manifest or are not recognized until years after treatment has been completed, sometimes not until the survivors are adults (Jacola et al, 2016). Pediatric cancer patients are especially vulnerable to the manifestation of late effects as they have an increased likelihood of interruptions in physical, cognitive, and social development due to receiving treatment at a young, malleable age (Brinkman et al, 2016). Most of the research that has explored the presence of late effects in pediatric cancer survivors has suggested various ways to decrease the influence of these effects such as implementing different cancer treatment methods or using later remedial tasks to help increase the adult survivor’s functioning (Brinkman et al, 2016). However, one late effect treatment possibility that has not been widely explored is the implementation of adult pediatric cancer survivor support groups (Brinkman et al, 2014; Kunin-Batson, KadanLottick, & Neglia, 2014; Ruiter et al, 2015; Jacola et al, 2016). By participating in THRIVING BEYOND SURVIVING 5 support groups that pertain to their situation and afflictions, pediatric cancer survivors who developed late effects could potentially regain some of their social and cognitive functioning and decrease the impact that the late effects had on their lives or at least develop strategies to cope with them more effectively. Being surrounded by and communicating with others who had experienced similar hardships and limitations could allow survivors to prevent further social and cognitive skill decline. Significance Due to increasingly better medical technology, more children are surviving their cases of pediatric cancer and living longer lives, but they are therefore also at a greater risk for developing late effects (Brinkman et al, 2016). As the risk of developing late effects increases, more methods need to be identified that can either help prevent or remedy the onset of these effects and the impact they have on survivors’ lives. One such method of decreasing the influence of these late effects could be through the utilization of support groups. If survivors who utilized cancer-related support groups showed fewer signs of cognitive or social deficits, it could be beneficial to invest more efforts into expanding the size and availability of the groups in order to help more people. Psychologists, physicians, and other healthcare providers who work with these pediatric cancer survivors could provide more information and place more emphasis on urging their patients to seek support groups in order to lessen any unintended effects from their treatment and hospitalization. Literature Review Cognitive Functioning Late Effects THRIVING BEYOND SURVIVING 6 Extensive research has been conducted that indicates the presence of cognitive deficits in adult pediatric cancer survivors (Edelmann et al, 2013; Kunin-Batson et al, 2014; Prasad et al, 2015; Edelmann et al, 2016). Many studies have shown that adult pediatric cancer survivors have significantly decreased functioning in various cognitive skills such as memory, attention, intelligence, and executive functioning when compared with the general population (Edelmann et al, 2013; Brinkman et al, 2016; Edelmann et al, 2016; Jacola et al, 2016). To control for variations in natural baseline cognitive ability, other research efforts have compared mental functions in adult pediatric cancer survivors to capabilities of their healthy siblings and have found that survivors still report more cognitive deficits (Jacola et al, 2016). This indicates that the loss of normal mental functioning experienced by survivors is due to their adverse medical experiences and not to genetic predispositions. Previous research has also found that cognitive deficits appear in survivors who suffered from a wide range of cancer types and underwent various forms of treatment, even those that did not directly affect the central nervous system (Brinkman et al, 2016; Edelmann et al, 2016). The interrupted development caused by treatment and hospitalization in pediatric patients appears to broadly increase survivors’ risk of developing late effects, regardless of their specific therapy exposure. This unfortunately also indicates that the disruption caused by late effects is fairly widespread. These cognitive deficits have been associated with deficiencies in various other aspects of survivors’ lives as well which have broader implications for their ability to lead