Understanding the complexity of decision-making for mothers of young children with ambulatory cerebral palsy: A qualitative phenomenological study.

Abstract

To investigate non-clinical factors that affect health-related decision-making in mothers with young ambulatory children living with cerebral palsy (CP). Guided by phenomenology, we asked parents to describe early experiences of raising a young ambulatory child living with CP. Conversations were audio-recorded, transcribed, coded, and analysed using a qualitative inductive approach. Eighteen parents (all mothers) of 20 children participated. Five themes emerged related to decision-making, each influencing goal setting, prioritization, and health service use. Mothers had to balance both child and family well-being. Acceptance of their child's diagnosis and abilities changed over time, partially influenced by their child's emerging voice. Uncertainty arose when weighing multiple factors regarding child, family, and what the future held. Experiences were laden with system-level burdens related to underinsurance and care coordination. Themes regularly overlapped and persisted. Our findings highlight the complexity of the decision-making experienced by mothers of young ambulatory children living with CP. Probing this information can inform appropriate shared care planning that meets the preferences and circumstances of mothers and their families.