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

ABSTRACT:

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). C

SUBMITTER: Lin JL 

PROVIDER: S-EPMC11645212 | biostudies-literature | 2025 Jan

REPOSITORIES: biostudies-literature