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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.
Results
1 to 3 of 3 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
Anderson JB, Brown DW, Lihn S
Power of a learning network in congenital heart disease.
This paper discusses the efforts of the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC). The collaborative formed to improve outcomes in infants with hypoplastic left heart syndrome. It sought to (1) decrease mortality, (2) reduce growth failure, and (3) reduce hospital readmissions due to major medical problems during the interstage period between discharge following stage 1 palliation (S1P) and admission for stage 2 palliation (S2P).
AHRQ-funded; HS016957.
Citation: Anderson JB, Brown DW, Lihn S .
Power of a learning network in congenital heart disease.
World J Pediatr Congenit Heart Surg 2019 Jan;10(1):66-71. doi: 10.1177/2150135118815023..
Keywords: Cardiovascular Conditions, Children/Adolescents, Education: Continuing Medical Education, Palliative Care, Quality Improvement, Registries
Thienprayoon R, Marks E, Funes M
Perceptions of the pediatric hospice experience among English- and Spanish-speaking families.
The objective of this study was to explore parental perspectives of the hospice experience in children with cancer, and to explore how race/ethnicity impacts this experience. Both English and Spanish speakers described the importance of honest, direct communication by medical providers, and anxieties surrounding the expectation of the moment of death. English-speaking families were more likely to return to the hospital because of unsatisfactory symptom management.
AHRQ-funded; HS022418.
Citation: Thienprayoon R, Marks E, Funes M .
Perceptions of the pediatric hospice experience among English- and Spanish-speaking families.
J Palliat Med 2016 Jan;19(1):30-41. doi: 10.1089/jpm.2015.0137.
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Keywords: Children/Adolescents, Palliative Care, Long-Term Care, Racial and Ethnic Minorities, Cancer