Childhood cancer and users' views: a critical perspective

The understanding of users' views of childhood cancer services has been hampered by several important problems. First, this area has been dominated by the tradition of psycho-oncology, with its overly narrow focus on the psychopathological sequelae of chronic childhood illness. Second, a set of inappropriate and undertheorized assumptions has prevailed about the nature of childhood and children's experiences of illness and children's ability to articulate and report on these. Third, the roles, responsibilities and experiences of parents of children with cancer have been unhelpfully conceptualized and underinvestigated. Finally, there has been a lack of suitable methods for making progress with empirical research in this area. In this paper, we argue that interpretive perspectives and associated methods can offer much to those seeking more insightful and better-informed approaches to the views of users of childhood cancer services. We offer some specific examples of where such approaches have already demonstrated considerable promise, showing, for example, that the parenting role is distinctive and should not be assumed to be interchangeable, theoretically or practically, with that of a carer. We conclude by identifying areas where both empirical research and theoretical development are needed.