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AHRQ Research Studies
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Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
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1 to 1 of 1 Research Studies DisplayedBogetz JF, Revette A, Rosenberg AR
"I could never prepare for something like the death of my own child": parental perspectives on preparedness at end of life for children with complex chronic conditions.
This study’s goal was to elucidate aspects important to preparedness at end of life (EOL) among bereaved parents of children with complex chronic conditions (CCCs). Participants answered 21 open-response queries on communication, decision-making, and EOL experiences as part of the Survey of Caring for Children with CCCs. Findings showed that most bereaved parents of children with CCCs described feeling unprepared for their child's EOL, despite palliative care and advance care planning, suggesting preparedness is a nuanced concept beyond "readiness." Recommendations included more research to identify supportive elements among parents facing their child's EOL.
AHRQ-funded; HS022986.
Citation: Bogetz JF, Revette A, Rosenberg AR .
"I could never prepare for something like the death of my own child": parental perspectives on preparedness at end of life for children with complex chronic conditions.
J Pain Symptom Manage 2020 Dec;60(6):1154-62.e1. doi: 10.1016/j.jpainsymman.2020.06.035..
Keywords: Children/Adolescents, Caregiving, Mortality, Chronic Conditions, Palliative Care