Advances over the past several decades in treating childhood cancer are among the most striking achievements in pediatrics, with a 5-year survival rate of approximately 80% (Ries, Smith, Guerney et al., 1999
). As a result, an increasing number of survivors are now young adults (1 in 640 adults between 20 and 39 years of age is a survivor of childhood cancer, Hewitt, Weiner & Simone, 2003
). While cured of their original childhood disease, survivors remain active in the healthcare system because of sequelae of their disease and treatment. Almost 70% have at least one ongoing medical problem that often emerges during the adolescent and young adult (AYA) period. Of these, a quarter has a severe or life threatening condition (e.g., infertility, neuropsychological difficulties, organ failure, second malignancies; Oeffinger et al., 2006
). Despite the potential for serious health outcomes, follow-up on recommended medical monitoring is low, with only one-third of survivors following through with recommended care (Nathan et al., 2008
; Oeffinger et al., 2009
Childhood cancer impacts the family both during treatment and survivorship. Although survivors are relatively psychologically resilient, their parents and siblings experience psychological struggles (Alderfer et al., in press
; Vrijmoet-Wiersma et al., 2008
). Parents play an important role during treatment by making decisions about their child's care, navigating the healthcare system, and by providing emotional support to their children and family (Klassen et al., 2007
). Parents also have potentially traumatic experiences related to their child's diagnosis and treatment, and post-traumatic stress symptoms have been shown to persist into survivorship (Alderfer et al., 2005
). During young adulthood, parents of childhood cancer survivors remain engaged with survivors around recommended cancer follow-up care. These parents are three times more likely to attend medical appointments than parents of other AYAs, including those with chronic illness (Ressler, Cash, McNeill, Joy, & Rosoff, 2003
). There is also evidence that parents may think and worry more about the cancer than the survivor does (Kinahan, Sharp, Arntson, Galvin, Grill, & Didwania, 2008
). The benefits or challenges of these observations have not been fully explored. Given the concerns about adherence to follow-up care, exploring how parents may influence adherence could be instructive.
Also relevant to understanding families of AYA survivors are the documented difficulties of survivors in achieving developmental milestones. AYA survivors struggle with achieving normative developmental tasks and identities (Stam, Grootenhuis, & Last, 2005
), are less likely than peers to attend college (Boman & Bodegard, 2004
) and experience more difficulty with vocational decisions and achievements (Langeveld, Ubbink, Last, Grootenhuis, Voute, & DeHaan, 2003
). Socially, AYA cancer survivors have more challenges with romantic/sexual relationships and are less likely to marry when compared with siblings. Not surprisingly, AYA childhood cancer survivors are more likely to live with their parents longer than others (Stam et al., 2005
Given that the majority of children with cancer will grow up, parents continue to be involved in their survivors' health monitoring and impacted by any ongoing medical problems. To gain a greater understanding of these parents' healthcare beliefs, we used the concept of health competence beliefs
. Health competence beliefs refer to a multidimensional set of perceptions about health and well-being that include current and future health concerns, ability to manage medical issues, ability to relate to others, and attitudes towards health promoting behaviors. These beliefs, measured by the Health Competence Beliefs Inventory (DeRosa et al., in press
), are appraisals and interpretations of one's experience.1
Health competence beliefs may also be relevant for parents. Parents have their own experiences and perspective of their child's illness and treatment (Kazak, McClure et al, 2004
.) and how it has impacted their lives. Although some parents permanent changes in their personal outlook and health-related beliefs as a result of their child's illness (e.g. loss in their positive outlook towards life, personal growth including a positive shift, increased sense of their personal health vulnerability, uncertainty regarding their child's psychological and physical health; Van Dongen-Melman, Van Zuuren, & Verhulst, 1998
), these beliefs have not been systematically measured.
This is an initial report about a measure of parent beliefs regarding their health and related competencies. Recognizing that parents' beliefs may be different from survivors' beliefs, the measure was based on a modification of the HCBI. The relationship among beliefs, parent distress, and aspects of the AYA were examined to provide initial evidence for the measure's validity.