Parents Describe Home Tube-Care Safety Challenges for Children With Medical Complexity

A qualitative study in Pediatrics examined how parents of children with medical complexity manage tube-related care and safety at home. Researchers enrolled a national sample of 21 English- and Spanish-speaking parents from individual families. Over one week, twice-daily surveys invited parents to submit photographs, text messages, or audio recordings about care; subsequent interviews explored their experiences. Researchers analyzed 267 messages and completed 18 interviews.

Of the messages, 36 (13%) described challenges, 151 (57%) depicted care strategies, and 70 (26%) included both. Reported challenges included supply issues (25 instances; 24%), devices not working as intended (23; 22%), and care irregularities experienced as normal (21; 20%). Strategies included supporting activities of daily living (139 instances; 63%), organization techniques (93; 42%), and tube-related preparation (89; 40%). Parents’ approaches were personalized and creative, but they often did not share challenges or strategies with their child’s care team.

The findings identify potential opportunities for care teams to elicit families’ home-care experiences and address system-level barriers. However, this small qualitative study characterizes reported experiences rather than measuring adverse-event rates or testing whether adaptations improve safety. The abstract does not establish the effectiveness of specific interventions, and full text was unavailable for assessment.