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Article Excerpt
The authors propose that families facing childhood cancer inadvertently become part of a distinct cultural group. To better train clinicians working with these families, this study was conducted as a phenomenological exploration of the common experiences of those who work with, and participate in, this "culture of cancer" (i.e., members of a pediatric oncology treatment team that includes medical family therapists). Two primary themes emerged from the data: culture of change and relationships. A qualitative description of medical family therapists as part of the treatment team was also developed. Insight into this culture and recommendations for family therapists working in this area of practice are provided.
Keywords: family therapy, childhood cancer, therapist competence
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In marriage and family therapy, as well as in other counseling disciplines, there has been a push for relevant and competent approaches to the treatment of specific cultural groups (Kim, Bean, & Harper, 2004; Sue, Arredondo, & McDavis, 1992; Sue & Sue, 2003). Typically framed as a function of ethnic, racial, or religious characteristics, culture contextualizes family dynamics and the associated interactions between therapists and family members. We suggest that culture may transcend ethnicity and race and that other sociodemographic groupings can also be included in its discussion and definition. For instance, the worldview held by families, individuals, and communities can be informed by their experiences of trauma or other pervasive, all-consuming problems such as war, natural disaster, or chronic illness (Morris, 2000). This overarching and collective perspective can be seen as an approximation of the shared culture of a group in that it provides a framework for interpersonal relationships in the family and for interactions with larger systems (e.g., school, work, religious, medical, and legal institutions).
In accordance with this, it is our belief that most families who experience the diagnosis of a child with cancer become participating members in the "culture of childhood cancer." As such, they become part of a cultural group with its own unique terminology, traditional practices, rites of passage, and individual- and family-focused demands. Robinson, Carroll, and Watson (2005) referred to this experience in terms of the "old world" that existed before diagnosis and the "cancer-dominated world" that is experienced postdiagnosis. They suggested that a family's ability to cope is connected to its ability to navigate this transition. In most cases, families must adapt quickly and learn to function within the culture to survive emotionally and, sometimes, physically. Given the challenges of adapting and surviving, family members can be considered at risk for secondary trauma, poor treatment adherence, problematic functioning, and other complications. As a result, medical family therapists (MedFTs) who are members of this culture must reach a level of clinical competence to help these families adapt to their new cultural grouping. Although several books have been written addressing the impact of ethnic and racial culture on cancer treatment (e.g., Dowell, Copeland, & van Eys, 1987; Moore & Spiegel, 2004), it is our contention that MedFTs and other clinicians can consider culture of childhood cancer an appropriate conceptual term, given the omnipresent nature of this illness and its near-total impact on individuals and families.
Our goal in this article is to expand the conceptual and empirical knowledge base associated with this specific disease-related group. We present pertinent information regarding therapist competence, along with the results of an effort to create a qualitative description of the common experiences of those who are part of the culture of childhood cancer (i.e., members of a pediatric oncology treatment team).
LITERATURE REVIEW
Over the past 2 decades, numerous authors have called for culturally competent therapy approaches to treating families; however, only a small number have provided organized approaches for researchers and therapists to follow in meeting this challenge (e.g., Ridley, Mendoza, Kanitz, Angermeier, & Zenk, 1994; Sodowsky, Taffe, Gutkin, & Wise, 1994; Sue & Sue, 2003). Although the call for increased therapist competence in working with ethnic and cultural groups predated Sue et al. (1992), it can be argued that their work initiated the most widely used standard for conceptualizing and investigating multicultural therapist competence. More specifically, Sue et al. (1992; Sue & Sue, 2003) suggested that therapists and counselors need to attend to three main areas to appropriately serve diverse client populations: (a) knowledge--about the worldview and culture of their clients; (b) awareness--of their own culture and values and any biases and assumptions regarding the clients' ethnic or cultural group; and (c) skills--therapeutic actions and interventions that are relevant and appropriate for working with diverse clients.
Knowledge
MedFTs should be familiar with several key knowledge areas related to childhood cancer. These areas include prevalence rates, types of childhood cancer, treatments, and prognosis. In addition, MedFTs should have knowledge about the development and impact of serious illness on the family system. As an introduction to the topic, national statistics have indicated that childhood cancers account for 0.03% of all cancers diagnosed, with approximately 9,200 children younger than 15 newly diagnosed in 2004 (American Cancer Society, 2004). Although this translates to a yearly incidence rate of 1 in 6,500 children, when combined with the number of children receiving ongoing treatment, there are thousands of children and families coping with childhood cancer at any given point in time.
Despite medical advances in treatment, cancer is the leading cause of death in children younger than 15 (American Cancer Society, 2004). These advances in medicine have improved the survival rate to nearly 78% 5 years after diagnosis. The most common type of childhood cancer is leukemia, and it accounts for 25% of cases, with acute lymphoblastic leukemia being the most common leukemia type (Hewitt, Weiner, & Simone, 2003). Other common childhood cancers include tumors of the central nervous system, lymphomas, carcinomas, germ cell tumors, soft tissue sarcomas, sympathetic and allied nervous system tumors, renal tumors, retinoblastoma, and hepatic tumors (Hewitt et al., 2003).
It is important for MedFTs to be aware that childhood cancer is less common than cancers in adulthood (Brigham & Children's Hospital, 2005); therefore, treatment for childhood cancer is...
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