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

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.