Interrelated Processes Toward Quality of Life in Survivors of Childhood Cancer: A Grounded Theory

Childhood cancer continues to be met with increasingly successful treatment outcomes and improved rates of survival, making survivors an important population to study (Pogany et al., 2006). With the growing number of childhood cancer survivors, it is important to assess and understand their post cancer quality of life (QOL), particularly because the extant literature in this area appears inconsistent and contradictory. Authors of past reviews of quantitative studies in this area (Calaminus & Kiebert, 1999; Eiser, Hill, & Vance, 2000; Langeveld, Stam, Grootenhuis, & Last, 2002; McDougall & Tsonis, 2009; Stam, Grootenhuis, & Last, 2001) have reported lower, higher, or similar QOL ratings for survivors when compared with population norms and matched comparison groups. Despite these inconsistencies, researchers from previous studies have indicated that most survivors were doing well overall. When looking at specific aspects of QOL, findings from previous research indicate that, in general, survivors fair significantly poorer than comparison groups with respect to physical well-being (Maunsell, Pogany, Barrera, Shaw, & Speechley, 2008; Speechley, Barrera, Shaw, Morrison, & Maunsell, 2006; Stam, Grootenhuis, Caron, & Last, 2006; Zeltzer et al., 2008). Surprisingly, a number of studies report that survivors have significantly better emotional well-being than comparison groups (De Clercq, De Fruyt, Koot, & Benoit, 2004; Pemberger et al., 2005; Van Dijk, Imhof, et al., 2007; Zebrack, Yi, Peterson, & Ganz, 2008; Zeltzer et al., 2008). It is apparent that past research has not adequately addressed the QOL of survivors of childhood cancer. The concept of QOL has been increasingly used in biomedical, rehabilitation, and nursing research during the past three decades (Moons, Budts, & De Geest, 2006). However, there is no consensus regarding the definition and measurement of QOL. The World Health Organization (WHO) (World Health Organization Quality of Life Group, 1998) defines QOL as "individuals' perceptions of their position in life in the context of the culture and value system in which they live and in relation to their goals, standards, and concerns" (p. 1570). Similarly, Oleson (2002) defines QOL as "the subjective perception of happiness or satisfaction with life in domains of importance to the individual" (p. 439). In this respect, QOL refers to a broad personal valuation of the nature of one's life (Rosenbaum et al., 2005). The WHO suggests that QOL can be categorized into four primary domains: physical, psychological, social functioning/well-being, and environmental conditions (WHO, 1996). Spiritual well-being is often captured as an aspect of psychological functioning/well-being. However, researchers have argued that spirituality is a separate and distinct core domain of QOL (Peterson & Webb, 2006). Quantitative work in the area of childhood cancer survivorship has most often used instruments that measure QOL in terms of physical, psychological, and social functioning/well-being (McDougall & Tsonis, 2009). Well-being in these areas of life is considered to be indicative of successful survivorship (Shepherd & Woodgate, 2010). However, rarely have individuals been asked to further elucidate about these areas or about their satisfaction with life overall (Seitz et al., 2011). Indeed, few qualitative studies that invoke the stories of cancer as told by young people can be found among the extant literature in this area (Woodgate, 2006). Moreover, no qualitative study has been found that inquires specifically into how older adolescent and young adult long-term survivors of childhood cancer themselves define QOL, or what processes survivors go through regarding their QOL (Hinds, 2010). Study Purpose The purpose of this grounded theory study was to understand how individuals who have survived childhood cancer experience QOL using qualitative methods. …