Parents' Experiences and Needs in Home Nutritional Management of Children With Short Bowel Syndrome: A Qualitative...

Short bowel syndrome (SBS) is a rare but severe malabsorptive condition resulting from resecting extensive small bowel or congenital anomalies. Children with SBS require long-term nutritional support to maintain growth and development. This study aims to explore the experiences and needs of parents managing home nutrition for children with SBS. It seeks to identify gaps in current nutritional management practices and provide insights into developing personalized, evidence-based strategies to enhance support and optimize long-term care outcomes.

A qualitative descriptive study was conducted using semistructured interviews with 12 parents of children with SBS. Each interview ranging from 20 to 45 min, focused on home nutrition management experiences and needs. Content analysis was employed to theme extraction.

Four major themes and 12 sub-themes were identified. Complex emotional experience includes exhaustion and self-healing, questioning and anxiety, and positive coping and adaptation. Challenges and responses to nutrition management included seeking specialized medical support, heavy caregiving burden, exploration of different ways of nutrition management and emergency response. Financial burden was identified as a major theme with the sub-theme of financial burden posing dilemma. Additionally, parents expressed multidimensional needs for home-based nutrition management, including medical support, reimbursement policy tilt, diversified professional knowledge and external support from medical institutions.

Parents face substantial pressures in managing home nutrition for children with SBS, highlighting the need for structured, multidimensional support to strengthen caregiving confidence and improve long-term outcomes.