Research That Matters (January 17 - 20, 2008)

Purpose: The purpose of this research study was to explore the impact of childhood cancer on the lives of young adult survivors. This presentation reports on their perceptions of the family aspects of childhood cancer survivorship.

Methods: Descriptive phenomenology based on the philosophy of Husserl was chosen to understand the unique life-world of young adult childhood cancer survivors. Eight young adult survivors (ages 19-24), off treatment for at least 2 years, were recruited from a survivors clinic at a Midwestern pediatric oncology center. The principal investigator conducted the unstructured interviews (lasting 1-1/2 hours) in the participant's homes. The interviews were transcribed and analyzed using modified Colaizzi data analysis methods. A team experienced with this method discussed the resulting themes and theme clusters. To ensure trustworthiness and credibility and reduce researcher bias throughout the study, full use was made of bracketing, reflexivity, member checking, and thick description. In addition, an audit trail was kept throughout the study, including documentation of reflection, methodological decisions, and data analysis chronologies so others could follow the steps involved in the study.

Results: Two themes related to the young adults perceptions of the family aspects of their cancer experience: 1) Cancer changed me and my life and; 2) Supportive people are always there for you. The participants were able to identify several ways the cancer changed their families. These included an increased sense of closeness and pulling together as a family from the time of diagnosis through present time. They felt the family learned to value “what is important in life”, appreciate the time together, and to express their love openly. In some cases, family members were described as their closest “friends” or role models. They are also very aware of the hardship on parents and siblings during their treatment time, reflected by a sense of gratitude for family members sacrifices and an obligation to make good decisions to remain healthy for their family's sake. Maintaining close family ties and feeling safe and comfortable in their surroundings were high priorities for all. Most maintained this by continuing to live at home with their parents or choosing to attend college near home to remain close to their families. All recognized and valued the indispensable support they received during their treatment, which and continues to this day.

Implications for practice or policy: These findings offer an insight into how young adult survivors view the role of their family in their cancer experience. These survivors described both the positive and negative aspects of their cancer experience related to their family members. Social workers and other healthcare providers working with survivors and their families can use this knowledge to help normalize survivors' feelings and experiences throughout the survivorship experience. Family members would also benefit from knowing how young adults perceive the impact of the cancer experience on their family, their relationships with family members, and decision-making far beyond the initial treatment period of survivorship.