Caregiver Values and Preferences Related to Surgical Decision-Making for Children with Medical Complexity.

Autor: Lin JL; Division of Pediatric Hospital Medicine, Department of Pediatrics, University of Utah, Salt Lake City, UT. Electronic address: jody.lin@hsc.utah.edu., Devereaux T; School of Medicine, University of Utah, Salt Lake City, UT., Simon TD; Division of Hospital Medicine, Department of Pediatrics, University of Southern California Keck School of Medicine, Los Angeles, CA., Kaphingst KA; Department of Communication, University of Utah, Salt Lake City, UT; Huntsman Cancer Institute, University of Utah, Salt Lake City, UT., Zhu A; Division of Pediatric Hospital Medicine, Department of Pediatrics, University of Utah, Salt Lake City, UT., Narayanan U; Orthopaedic Surgery, Rehabilitation Sciences, Institute of Health Policy Management & Evaluation, University of Toronto, Hospital for Sick Children, Toronto, Canada., Berry ABL; Department of Medical Social Sciences, Northwestern University, Evanston, IL., Eppich KG; Division of Epidemiology, Department of Internal Medicine, University of Utah, Salt Lake City, UT., Stoddard G; Study Design and Biostatistics Center, University of Utah, Salt Lake City, UT., Smith JT; The Orthopedic Partners, Salt Lake City, UT., Andras L; Jackie and Gene Autry Children's Orthopedic Center, Children's Hospital Los Angeles, Los Angeles, CA., Heflin J; The Orthopedic Partners, Salt Lake City, UT., Keenan HT; Division of Critical Care Medicine, Department of Pediatrics, University of Utah, Salt Lake City, UT., Asch SM; Department of Medicine, Stanford University, Stanford, CA., Fagerlin A; Department of Population Health Sciences, University of Utah, Salt Lake City, UT; Salt Lake City VA Informatics Decision-Enhancement and Analytic Sciences, Salt Lake City, UT.
Jazyk: angličtina
Zdroj: The Journal of pediatrics [J Pediatr] 2025 Jan; Vol. 276, pp. 114366. Date of Electronic Publication: 2024 Oct 19.
DOI: 10.1016/j.jpeds.2024.114366
Abstrakt: Objective: To uncover the values and preferences of the caregivers for children with medical complexity using the test case of surgical treatment decision-making for pediatric neuromuscular scoliosis that will inform the future development of a decision support tool in this population.
Study Design: We conducted a qualitative study of semistructured interviews of English- and Spanish-speaking caregivers of children with neuromuscular scoliosis from 2 geographically distinct children's hospitals. We used purposive sampling of language and treatment options selected to capture diverse experiences. Analysis was on the basis of grounded theory with synthesized caregiver values and preferences themes.
Results: From 47 participants, we completed 41 interviews (9 in Spanish). Caregivers had a mean age of 43.2 years, were mostly White (66%), and had children with a mean age of 15.6. In total, 64% chose surgery. The following values and preferences were important to many caregivers: reducing scoliosis-related pain, minimizing mobility limitations to optimize socioemotional quality of life, limiting the impact of comorbidities on overall quality of life, information provided by peer support, the uncertainty of outcomes due to underlying comorbidities, and the uncertainty related to the anticipated progression of their child's scoliosis curve. Caregivers experienced immense uncertainty related to treatment outcomes due to their child's comorbidities.
Conclusions: Caregivers of children with medical complexity may benefit from decision support that includes both values clarification exercises to help caregivers identify what of the many possible values and preferences are important to them and novel methods to communicate uncertainty in the care of CMC.
Competing Interests: Declaration of Competing Interest The research reported in this publication was supported by the Primary Children's Hospital Foundation Early Career Development Award and in part by the National Center for Advancing Translational Science of the National Institutes of Health under Award Number UM1TR004409. J.L. received support from the National Institute of Arthritis and Musculoskeletal and Skin Diseases of the National Institutes of Health under Award Number K23AR079778. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. L.A. owns stock in Eli Lilly, serves as a consultant/paid presenter for Medtronic and Nuvasive, and receives publishing royalties from Orthobullets and royalties from Orthopediatrics. The remaining authors have no financial disclosures or conflicts of interest to disclose.
(Copyright © 2024 Elsevier Inc. All rights reserved.)
Databáze: MEDLINE
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