Work dynamics in family care of hemophilic children

Abstract

School-aged boys with hemophilia, their parents, and siblings were interviewed and observed over a 5-year period, the field work taking place in their homes, schools, and during hospitalization, clinic visits, and summer camp periods. Sequential, open-ended interviews, and participant-observation techniques enabled the inquiry to study the process of the children's development as a major factor in changes that occured in the management of their illness over time. Qualitative issues identified for study focused on the divisions of labor inherent in family interactions concerning the care of their hemophiliac children. The locus of control relative to particular technical medical interventions shifted from the medical center to a parent, eventually to each boy, with his associated development. Shifts were not entirely unidirectional, particular conditions influencing the tasks which transfer, the pace of changes and the resulting consequences. Categories of tasks are examined, with specific focus being the learning-teaching processes, the related awareness contexts, and the temporal dimensions involved. Concurrent with the hemophiliac boys' learning to infuse themselves with their particular missing clotting factor, a speaking up for themselves in interaction with peers and nonparent adults, relative to defining or treating the hemophilia, did not shift away from their parents. The boys' nonassumption of this aspect of their interactions is associated with a developing self-consciousness about their ‘differences’, which indicated a greater willingness to take physical risk (nonattention to the hemophilia requirements) than the social risk of emphasizing difference from peers. Adult intermediating, especially in the larger school contexts, thus remained primarily the parents' task in order to support the children's integration into these organizations. Coincidentally, the hemophiliac boys became more active in participation with peers when they were members of self-selected small friendship groups. It is suggested that comparable data from studies of children with diabetes and cystic fibrosis support the applicability of this study to understanding divisions of labor in families with children affected by other diseases. Differentials may be inferred, however, if disease trajectories are markedly unlike that of hemophilia.