Parental perceptions of procedure-related distress and family adaptation in childhood leukemia

Abstract

Child and parental distress related to lumbar punctures and bone marrow aspirates and general family adaptation are evaluated in a cross-sectional study of children currently in treatment with leukemia in first remission (N = 70). A parental self-report measure developed for this study--the Perception of Procedures Questionnaire (PPQ)--yielded three factors: (a) parental satisfaction, (b) parental distress or involvement, and (c) child distress. Data from the PPQ showed high levels of both satisfaction and distress in the context of invasive procedures. Data from standardized measures of family adaptation demonstrated a range of functioning. Analyses by length of time since diagnosis indicated that parental distress remains stable over the course of treatment. The data are discussed with respect to the newly developed measure of parental procedures (the PPQ) and the need for research in this field that provides an integration of procedural distress with parent and family perceptions and adjustment.