A B S T R A C T PurposeWhen a child's cancer progresses beyond current treatment capability, the parents are likely to participate in noncurative treatment decision making. One factor that helps parents to make these decisions and remain satisfied with them afterward is deciding as they believe a good parent would decide. Because being a good parent to a child with incurable cancer has not been formally defined, we conducted a descriptive study to develop such a definition.
MethodsIn face-to-face interviews, 62 parents who had made one of three decisions (enrollment on a phase I study, do not resuscitate status, or terminal care) for 58 patients responded to two open-ended questions about the definition of a good parent and about how clinicians could help them fulfill this role. For semantic content analysis of the interviews, a rater panel trained in this method independently coded all responses. Inter-rater reliability was excellent.
ResultsAmong the aspects of the definition qualitatively identified were making informed, unselfish decisions in the child's best interest, remaining at the child's side, showing the child that he is cherished, teaching the child to make good decisions, advocating for the child with the staff, and promoting the child's health. We also identified 15 clinician strategies that help parents be a part of making these decisions on behalf of a child with advanced cancer.
ConclusionThe definition and the strategies may be used to guide clinicians in helping parents fulfill the good parent role and take comfort afterward in having acted as a good parent.
The efficacy of a program of sensorimotor facilitation procedures to improve oral motor function and feeding behaviors in students with severe developmental delay was explored. Four severely handicapped students were administered the oral habilitation program using a multiple baseline across-subjects design with staggered introduction of the treatment. Graphic analysis and the split middle method of trend estimation revealed that one subject evidenced an increase in weight and improved oral motor evaluation as a result of the intervention. Two other subjects displayed partial improvement. The correlates of treatment effectiveness are briefly discussed and the need for continued investigation is emphasized.
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