Parental perceptions of procedure-related distress and family adaptation in childhood leukemia
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This study found that parents of children with leukemia experience high satisfaction and distress during medical procedures. Parental distress remains stable throughout treatment, highlighting the need for integrated care approaches.
Area of Science:
- Pediatric Oncology
- Child Psychology
- Family Medicine
Background:
- Childhood leukemia treatment involves frequent, invasive procedures like lumbar punctures and bone marrow aspirates.
- These procedures can cause significant distress for both children and their parents.
- Understanding parental and family adaptation is crucial for supportive care.
Purpose of the Study:
- To evaluate child and parental distress associated with medical procedures in pediatric leukemia patients.
- To assess general family adaptation during leukemia treatment.
- To introduce and validate a new parental self-report measure, the Perception of Procedures Questionnaire (PPQ).
Main Methods:
- Cross-sectional study of 70 children with leukemia in first remission.
- Utilized the newly developed Perception of Procedures Questionnaire (PPQ) for parental self-report.
- Employed standardized measures to assess family adaptation.
Main Results:
- The PPQ identified three factors: parental satisfaction, parental distress/involvement, and child distress.
- Parents reported high levels of both satisfaction and distress regarding invasive procedures.
- Family adaptation varied, and parental distress remained stable over time since diagnosis.
Conclusions:
- The PPQ is a valuable tool for assessing parental perceptions of medical procedures.
- Parental distress is a persistent issue throughout leukemia treatment.
- Further research should integrate procedural distress with parent and family adjustment.
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.
