Good Parent Intervention at End of Life

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DESCRIPTION (provided by applicant): Parents of children with incurable cancer face end-of-life decisions on behalf of their seriously ill child including whether or not to enroll their child in a Phase I study, to make their child a 'do not resuscitate' status, to begin terminal care, or to withdraw life support. Descriptive research to date indicates that one of the factors that most helps parents to make these decisions and to remain satisfied with the decision afterward is their perception that they decided as a 'good parent' would decide. Parents define being a 'good parent' as making a decision that is in the best interest of their child. Parents' perception of their success of being 'a good parent' is influenced by their interactions with the child's health care providers. Health care providers who are not fully informed about the decision and the parents' rationale for the decision are likely to convey doubt about the decision to parents and to other health care providers. Parents interpret this doubt as staff questioning the parents' ability to make good decisions. Lack of adequate information also creates staff tension. This single-site feasibility study will implement and evaluate a two-part communication intervention designed to identify and support parents' perceptions of being a good parent and to communicate this definition and the rationale for the parents' decision to staff. The intervention will be implemented in 60 to 80 end-of-life clinical care situations where parents have made a decision on behalf of a child who is still living. The feasibility study is guided by the Pediatric Quality of Life at End of Life model. The parent intervention includes a face-to-face interview with parents regarding their definition of a 'good parent' and their basis for the decision they made. Parents will be interviewed within 72 hours after making the end of life decision and again 8 to 12 weeks after their child's death. Health care professionals assigned to the terminally ill child will receive the communication intervention within hours of the parent interview, and will evaluate its usefulness 1 to 2 weeks after receiving it. Study findings will provide the basis for a trial of the efficacy of the intervention in decreasing parents' self-doubt and staff tension about end-of-life decisions on behalf of dying children.