The aim of this thesis is to understand the experiences of eight American high school students who have been diagnosed with cancer. By increasing understanding of the challenges that adolescents in cancer survivorship experience, better support can be identified. The experience of cancer survivorship influences the physical, psychological, and social experiences of patients. As the survival rate of childhood cancers continues to increase, death becomes less likely making the need to maintain educational engagement during survivorship increasingly important. The research questions for this study were designed to address two main gaps in the current field of research. The first research question aims to address how the physical and psychological effects of cancer and treatment impact the participants' engagement with school. The second research question aims to understand the role that school plays for adolescents in cancer survivorship, including how participants experienced supplemental education during and after cancer treatment. This study uses a qualitative research methodology to address the research questions utilizing primarily semi-structured interviews and an adjusted version of the Adolescent Coping Scale. When used in combination with the interviews, the scale provides a picture of what the participants experienced and how they have been able to cope with the challenges they have faced. Interpretive phenomenological analysis was used to provide structure to the interview analysis. The results of this study show that fatigue and a compromised immune system have an impact on school attendance more than other physical effects during cancer treatment. As a result, adolescents are most at-risk of experiencing challenges in educational engagement during treatment. The results of this study also show that the feeling of uncertainty throughout cancer survivorship promotes fear and the feeling of a loss of control. Once treatment ends, fear of relapse is common. Physical and psychological effects were felt to improve as time passed. Another key result of this study is that the cancer experience results in a shift in perspective that becomes incorporated into the formation of identity. Participants feel different from peers as a result of the physical and psychological effects of the cancer experience. The results from the Adolescent Coping Scale indicate that school achievement, relapse and the worsening of physical side effects, and being treated different by peers were common concerns for the participants regarding their school, illness, and social concerns, respectively. Lastly, the participants view supplemental education as successful if it meets their personal academic and physical needs, is implemented consistently, and helps them to feel emotionally supported and socially connected. However, more research is needed that focuses on the implementation of policy at the state and district levels to discern whether this is a common challenge unique to this population of students with a physical or medical disability. The sample available for this research topic is not only limited to an extremely small population, but they are also a highly guarded population, making access for recruitment challenging. However, while generalization is difficult with a study of this size, the evidence collected on the participants' experiences during and after treatment provides valuable data on aspects of supplemental education implementation.

Indiana University-Purdue University Indianapolis (IUPUI) / Adolescents and young adults with cancer have poorer treatment and survivorship outcomes than either younger or older cancer patients. These individuals also have psychosocial late effects and engage in lifestyle behaviors that increase their risk of subsequent cancer and other chronic illnesses. Thus, there is a need to identify protective factors during the diagnosis and treatment period to foster healthy lifestyle behaviors. Connectedness with healthcare providers is a potential protective factor that may diminish risk-taking behaviors and foster healthcare self-management in adolescents with cancer. However, little is known about connectedness with healthcare providers from adolescents with cancer perspectives. The purpose of this study was to describe young adult cancer survivors' experiences of connectedness with their healthcare providers as they negotiated the experience across the cancer continuum from diagnosis to survivorship during adolescence. A qualitative, empirical phenomenological method guided this research. The sample consisted of 9 young adult cancer survivors who had cancer as adolescents. A broad, data generating question was constructed to elicit rich, narrative descriptions of participants' experiences of connectedness with healthcare providers, which were audio-taped and transcribed. The narrative data were analyzed using Colaizzi's method, which involved a systematic process of extracting and analyzing significant statements for formulated meanings and themes. Seven theme categories were identified and then used to develop a narrative of the essential structure of the experience of connectedness. Connectedness with healthcare providers is a multi-faceted experience that encompasses instances of not only connectedness, but also unconnectedness and disconnectedness. Effective strategies that foster connectedness with adolescents were identified. Behaviors that foster disconnectedness relate to a lack of respect for the adolescent's personhood. Findings indicate that connectedness with healthcare providers may make adolescents more likely to engage in care partnerships and effective self-management during treatment and into survivorship. When there is no connectedness or a disconnection with healthcare providers, a door shuts: there are feelings of helplessness and vulnerability, anger and resentment, and reluctance to connect with healthcare providers for cancer prevention. Clinical implications for healthcare providers are discussed. Future research should focus on connectedness theory development, measures, and interventions that foster adolescent-provider connectedness.

D.Litt. et Phil. ( Psychology) / A literature survey has confirmed that the growing number of cancer survivors in general are experiencing both physical as well as psychological and social adaptation difficulties following their cancer treatment. This is no different for patients diagnosed with Osteosarcoma and Ewing sarcoma (bone sarcomas) during adolescence. At present there is no formal psychosocial intervention program available to the patients presenting with Ewing and Osteosarcomas. Because of the multicultural nature of the patients as well as the fact that many childhood and adolescent cancers do not include major surgery, as is the case with bone sarcomas, the direct applicability of generalized psychosocial intervention programs for adolescents with cancer other than bone sarcoma is doubtful ...

Indiana University-Purdue University Indianapolis (IUPUI) / The purpose of this study is to advance theoretical understanding of how an adolescent with incurable cancer prepares for end-of-life (EOL). A theoretical model was developed to link awareness, acceptance, and willingness to take action to EOL preparedness (knowledge about EOL, acknowledgement of grief and emotion, identification of the meaning of death and spirituality, and conceptualization of personal plan) and communication about EOL preferences and priorities; and to determine impact on quality of life (QOL). Method: Case study research method was used to guide data collection and analyses on two adolescent cases across two time points. The theoretically-based model was developed prior to data collection and based on research studies conducted in adult and pediatric EOL literature. Multiple sources of data were collected and triangulated to assess relationships between qualitative and quantitative data. Through an iterative process of pattern matching, data were compared to constructs in the conceptual model for both across cases, and across time. Results: Results indicate awareness (cognitive recognition of incurable prognosis) and acceptance (emotional acknowledgement of incurable prognosis) are both fluid concepts and varied within each time point and across time. Contextual factors (demographic, environmental, personal, and social support characteristics) influenced awareness, EOL preparedness, and willingness to take action; and directly influenced QOL. Level of awareness influenced involvement in EOL preparedness. Information preference and willingness to engage in discussions regarding knowledge about EOL were incongruent with actual knowledge about EOL. Adolescents demonstrated a willingness to discuss potential disease progression in order to conceptualize an EOL advanced care plan regardless of emotional acceptance of incurable prognosis. In contrast, acknowledgment of grief and emotions, and identification of the meaning of death and spirituality were related to acceptance of incurable prognosis and further determined conceptualization of immediate EOL priorities. Social constraint or lack of ability to discuss prognosis, was identified as an important construct that influenced communications. Implications: This study provides increased theoretical understanding of how adolescents living with advanced cancer confront EOL. Insight led to theory modification and expansion which may serve as a guide for future research to assist clinicians caring for adolescents living with incurable cancer. Victoria L. Champion, PhD, RN, FAAN, Chair

This study examined the relationship between executive and psychosocial functioning in 45 children and adolescents age 6 to 17 years who had been treated for a brain tumor. Executive functioning deficits can profoundly impact an adult's ability to function successfully in life. The purpose of the study was to evaluate the potential impact of executive functioning deficits on the day-to-day functioning in a pediatric population. The domains of executive functioning assessed included cognitive flexibility, conceptual thinking, sustained attention, and response inhibition. Psychosocial functioning was assessed using both parent and child report. Several significant relationships were found for adolescents ages 15 and older, with effect sizes ranging from medium to large. In particular, cognitive flexibility and conceptual thinking were significantly related to parent report of depression and adaptive functioning. Fewer significant relationships with smaller effect sizes were found for younger children. The results may reflect the developmental emergence of executive functioning abilities and late effects of executive functioning deficits upon psychosocial functioning. The correlational design of this study precludes definitive statements regarding the temporal nature of the relationship. Additional research, including longitudinal research and replicatory studies, will be needed to further investigate the developmental consequences of executive functioning impairment.