Understanding the complexity of decision-making for mothers of young children with ambulatory cerebral palsy: A qualitative phenomenological study.
Meghan E Munger, Rhonda G Cady, Nathan D Shippee and 3 others
PMID 39412081WHAT IT FOUND
Mothers of children with ambulatory cerebral palsy describe decision-making as a constant trade-off between clinical gains and family survival.
They report high uncertainty and administrative burden, often skipping therapy to protect work, money, or their child's happiness. Clinical success is not the only goal.
Key findings
01Mothers frequently deprioritize or skip recommended treatments, such as physical or occupational therapy, to protect family well-being, employment stability, or their child's social quality of life, even when they fear developmental regression.
02Administrative burden, specifically inconsistent guidance on insurance eligibility and coverage gaps for equipment like community wheelchairs, is a primary driver of decision-making stress, distinct from the emotional distress of the diagnosis itself.
03As children age, they begin defining their own quality of life, leading mothers to balance clinical goals against the child's emerging agency, such as refusing to wear orthoses or participating in social activities.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTs
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What it does not show
The sample was all mothers, excluding fathers' perspectives. Participants were highly educated, employed, and insured, meaning the burden described may be an underestimate for families with fewer resources. The study focused on ambulatory children with spastic CP, so findings may not apply to non-ambulatory or other CP types. Recruitment was from a single specialty center, which may limit generalizability.
The easy way to misread this
Do not interpret a mother's decision to skip therapy as a lack of concern for her child's physical progress. The study shows these decisions are often calculated trade-offs to preserve the family's financial stability, mental health, or the child's social happiness.