ArticleThe American journal of hospice & palliative care2026
Parental Goals of Care for Children With Rare Diseases: A Content Analysis of Pediatric Advance Care Planning Conversations.
Article in The American journal of hospice & palliative care, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
1 citing paper in PubMed.
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Authors and funding
4 authors.
Funding
Abstract
IntroductionCaregivers and surrogate decision makers for children with rare diseases often make complex medical decisions with limited prognostic information specific to their child's disease. This diverse population may share common goals related to their child's future care. Our objective was to describe goals of care as explored through advance care planning conversations among the high-risk and high-need community of families with children with rare diseases.MethodsWe performed inductive content analysis of Respecting Choices Next Steps FAmily CEntered (FACE) pediatric advance care planning conversations to identify themes related to goals of care. Interviews were conducted in the context of beta testing and a randomized control trial of a palliative care and advance care planning intervention for parents of children with rare diseases who cannot participate in medical decision making.ResultsWe analyzed 15 interviews conducted with 19 parents. We identified 13 goals of care themes:
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Registered trials
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