Objective: Families affected by childhood cancer need to adapt either temporarily or permanently. This study identifies variables that influence this adaption in positive or negative ways by presenting a classic grounded theory.
Methods:This inductive, qualitative study included 69 childhood cancer patients, 39 siblings, 42 parents, and 24 childhood cancer survivors from 104 families.
Results:The families enter a social process after diagnosis characterized by either shuttling between the well-known and the new or being in a situation with both aspects. The extent depends on the stage of the treatment (initial phase, during treatment, or the end of the course of treatment) and on four variables: (1) the diagnosis and prognosis; (2) the course of the disease, including duration of treatment or hospitalizations, and separation from the remaining family; (3) the child's current state, including symptoms, hospitalizations, and current risk of death or relapse; and (4) whether previous and current needs have been met.
Conclusions:These variables offer a possible explanation of insufficient coping strategies, and they should be used to identify potentially vulnerable families. The dynamic of the variables imply that families should be reevaluated during each of the three phases, as the risk of changes to the family's everyday life may increase and therefore their needs may also change.
K E Y W O R D Schildhood cancer, child health, family, grounded theory, oncology nursing, psycho-oncology
| INTRODUCTIONEvery year approximately 300,000 children (aged 0 to 19 years) are diagnosed with cancer. 1 This condition affects the everyday life and routines in the entire family to varying degrees, and a change in family roles occurs as the parental attention is shifted to the child with cancer. 2,3 Consequently, all family members must deal with changes in responsibilities, intense feelings, and communication to manage the family challenges directly linked to the childhood cancer. [4][5][6] Research has demonstrated that some families adapt while others do not, 4,7,8 and it is the families who do not adequately adapt who are at risk of problems at both the individual and family levels. 4,[9][10][11][12] This study aims to clarify why some families do not have the ability to adapt sufficiently either temporarily or permanently. In addition, the study aims to identify variables that influence this adaption in either a positive or negative way. Three research questions were used to investigate (1) how the disruption caused by childhood cancer affects the family, how they process the disruption, and where the disruptions are experienced; (2) what factors influence 282 -