The Meaning of Survivorship for Hispanic/Latino Adolescents and Young Adults Diagnosed with Cancer

Background and Purpose: With improvements in treatment during the recent decades, survival rates for childhood cancer have increased to almost 80%, resulting in an increasing population of long-term survivors (Ries et al., 2004). Studies of psychosocial functioning of childhood/adolescent and young adult cancer survivors are just beginning to appear in the literature. Particularly understudied are the experiences of Hispanic/Latino cancer survivors and the meaning of cancer diagnosis to this population (Jones, et al, 2010; Munet-Vilaro, 2004). Hispanic/Latino adolescents and young adults (AYA) may have a significantly different experience of cancer treatment and survival based upon cultural values. The purpose of this project was to conduct a qualitative study with this population to discover their experiences and meaning of surviving cancer.

Methods: Using a phenomenological approach, this study focused on the experience of cancer survivorship through in-depth interviews with fifteen Hispanic/Latino AYA's between the ages of 16 and 38 years. These survivors were diagnosed as young children, and at least one year post treatment. The setting for data collection was The University of Texas Health Science Center San Antonio Childhood Cancer Survivor Clinic. The phenomenological analysis allowed the integration of the textural and structural descriptions into the meanings and themes of the experience thus, the essence of the phenomena was constructed.

Results: Four essential themes about Hispanic/Latino AYA's experience as cancer survivor's emerged from analysis: borrowed strength of others; positive attitude is key to surviving; lost invincibility; branded a cancer survivor. According to these participants, the lived experience of surviving cancer was predominately positive. Yet, it is clear that long after these survivors have been labeled “cured” by the medical team cancer continues to be a large part of their existence. This includes the ongoing sense of being vulnerable to illness and a fear of relapse. Most tend to deal with this fear using positive coping strategies such as maintaining a healthy lifestyle and not exposing themselves to added risks such as smoking and drinking.

Conclusion and Implications: The results indicate that the cancer experience helped shape these AYA's into resilient young adults with optimistic life perspectives. These outcomes were due, in part, to the strong relationships that supported them through the cancer treatment and beyond. The findings presented here provide opportunities for health care providers to better understand this rapidly growing population and to create culturally resonant programs that can promote their long term health and well being. For example, understanding how Hispanic/ Latino AYA survivors obtain strength from their relationships with family and medical staff can provide opportunities for healthcare professionals to include the extended family throughout the treatment process and have services in place to ensure a supportive environment for patients. At first glance, a cancer diagnosis may seem to be a devastating and traumatic experience for young children. These AYA survivors have shown that the experience also has the potential for developing a positive and optimistic life perspective, strong relationships, and personal resilience.