Understanding Quality of Life in Adolescents Living with Advanced Cancer

Abstract

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