Barbara Jones, Ph.D., MSW
Deborah Volker, Ph.D., RN, AOCN
Yolanda Vinajeras, MSW
Duration: June, 2005 – May, 2006
PURPOSE AND SIGNIFICANCE:
The purpose of this project is to conduct a qualitative pilot study with 10-15 Hispanic adolescent cancer survivors to discover the experiences and meaning of surviving cancer for this population. An understanding of the lived experiences of Hispanic adolescents with cancer will provide opportunities for developing empirically-based and culturally syntonic interventions that can promote health and well being. As the Hispanic population in the U.S. continues to grow rapidly, health care and health promotion interventions are needed to be developed that incorporate their unique cultural experiences.
Childhood cancer survival rates have steadily increased in the U.S. over the past 20 years (NCI, 2004). With current treatments, more than 70% of children diagnosed with cancer are expected to become long-term survivors (NCI, 2004). However, the end of cancer treatment does not indicate the end of the effects of cancer. Survivors diagnosed as children may experience learning difficulties, social stigma, trouble with peer relations, depression, anxiety, post traumatic stress disorder (PTSD), difficulty integrating their cancer experience into their current life, and difficulty transitioning to adult health care, and infertility (Hewitt et, al. 2004; NCI, 2004, Woodgate, 1999).
According to the IOM, nearly one-third of childhood cancer diagnoses occur during the ages of 15-21 (Hewitt, et al., 2004). However, the focus of most research has been on younger survivors. Adolescent cancer survivors may experience some of the same challenges as child survivors as well as issues specific to a cancer diagnosis during adolescence. Adolescence is a critical developmental period and a cancer diagnosis for this age group can have significant psychological outcomes which can include depression, anxiety, PTSD, distorted self image, poor self esteem, isolation from peers, developmentally incongruent fears of death, reduced social skills, and a foreshortened sense of future (Zebrack & Chesler, 2001; Hewitt, Wiener, and Simone, 2004; NCI, 2004). Adolescent cancer survivors are often lost to follow up by their pediatric clinic due to their growing independence and mobility as they enter adulthood. Consequently, this cohort has been grossly understudied (NCI, 2004).
Two reports released in 2004, Living Beyond Cancer: Finding a New Balance, prepared by the President’s Cancer Panel, and Childhood Cancer Survivorship: Improving Care and Quality of Life, by the IOM, recommend increasing research on child/adolescent cancer survivorship, with an emphasis on psychosocial issues. Most research on psychosocial issues of childhood/adolescent cancer survivorship focuses on psychological late effects such as PTSD, health-related worries, and negative outcomes (Hewitt, et al, 2004; NCI, 2004; Zebrack & Chesler, 2001; Zebrack, et al, 2002). There has been less study of the meaning of the cancer experience for children/adolescents undergoing cancer treatment.
Hispanic adolescents also may have a significantly different experience of cancer treatment and survival based upon cultural values. While the term ‘Hispanic’ encompasses many cultures and distinct ethnicities, traditional values such as importance of family, respect for others, sense of honor, loyalty, ethnic pride, facing difficulty with courage, and strong religious faith may deeply influence the ways in which Hispanic adolescents make meaning of their cancer experience as compared to their non-Hispanic counterparts (Harrison, et, al, 1996; Holleran & Waller, 2003; Marin & Marin, 1991). However, their has been no study of these factors to date.
EXPECTED OUTCOME AND RELEVANCE:
The growing number of adolescent cancer survivors and the dearth of research to address their unique needs highlight the importance of this study (Hewitt et al, 2004; NCI, 2004). Particularly understudied are the experiences of Hispanic cancer survivors and the meaning of cancer diagnosis to this population (Munet-Vilaro, 2004). Study results will add to the knowledge about the experiences of adolescent cancer survivors focusing on Hispanic adolescents. Data will be used to design culturally relevant, empirically-based social work interventions that promote health and resiliency in Hispanic adolescent cancer survivors. Such a resilience-based support model can strengthen the practice approach to the psychosocial needs of adolescents with cancer. The pilot study data will be used as a basis for applying for foundation and federal funding to support a larger intervention study to promote health for Hispanic adolescents with cancer. Specific aims of this study are to:
- Explore the lived experience of Hispanic adolescent cancer survivors;
- Explore the meaning of surviving cancer for Hispanic adolescent cancer survivors; and
- Gather pilot data to be used in future studies to develop culturally relevant interventions to promote healthy adaptation for Hispanic adolescent cancer survivors.
PLAN & METHOD:
The conceptual orientation of this project will be a resiliency framework of understanding illness as a source of meaning and potential growth. The experience of trauma, such as a life threatening illness, often leads to a personal search for meaning and purpose (McCann & Pearlman, 1990; Neimeyer, 2000). Many studies have shown that receiving a cancer diagnosis precipitates a personal search for meaning/ purpose in the patient/survivor (Coward, 1997; Thompson & Pitts, 1993; Taylor, 1993; Karian, et, al, 1998). Finding a sense of meaning has been shown to be a source of resilience and positive adaptation after illness, loss and trauma (McCann & Pearlman, 1990; Neimeyer, 2000). Meaning-based research will allow an exploration of the unique experience of Hispanic adolescent cancer survivors and begin to explain how they can adjust positively to the cancer experience. This particular study will lead to future intervention research that can promote health and positive adaptation for Hispanic adolescent cancer survivors.
Center for Health Promotion Research, School of Nursing, University of Texas at Austin
Keywords: health care