PURPOSE: When 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. METHODS: In 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. RESULTS: Among 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. CONCLUSION: The 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.
PURPOSE: When 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. METHODS: In 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. RESULTS: Among 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. CONCLUSION: The 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.
Authors: P S Hinds; L Oakes; W Furman; P Foppiano; M S Olson; A Quargnenti; J Gattuso; B Powell; D K Srivastava; D Jayawardene; J T Sandlund; C Strong Journal: Oncol Nurs Forum Date: 1997-10 Impact factor: 2.172
Authors: Josephine M Clayton; Karen Hancock; Sharon Parker; Phyllis N Butow; Sharon Walder; Sue Carrick; David Currow; Davina Ghersi; Paul Glare; Rebecca Hagerty; Ian N Olver; Martin H N Tattersall Journal: Psychooncology Date: 2008-07 Impact factor: 3.894
Authors: Meaghann S Weaver; Katherine E Heinze; Katherine P Kelly; Lori Wiener; Robert L Casey; Cynthia J Bell; Joanne Wolfe; Amy M Garee; Anne Watson; Pamela S Hinds Journal: Pediatr Blood Cancer Date: 2015-12 Impact factor: 3.167
Authors: Terrah L Foster; Mary Jo Gilmer; Kathryn Vannatta; Maru Barrera; Betty Davies; Mary S Dietrich; Diane L Fairclough; Cynthia A Gerhardt Journal: Cancer Nurs Date: 2012 Sep-Oct Impact factor: 2.592
Authors: Liza-Marie Johnson; Angela C Leek; Dennis Drotar; Robert B Noll; Susan R Rheingold; Eric D Kodish; Justin N Baker Journal: Cancer Date: 2015-04-14 Impact factor: 6.860
Authors: Meaghann S Weaver; Katherine E Heinze; Cynthia J Bell; Lori Wiener; Amy M Garee; Katherine P Kelly; Robert L Casey; Anne Watson; Pamela S Hinds Journal: Palliat Med Date: 2015-04-28 Impact factor: 4.762