"Why Is There Not a Doctor that Knows Anything About This Part of My Body?" Patient Perspectives on Chronic Lactation Insufficiency.

Abstract

Introduction: Although exclusive breastfeeding is recommended for the first six months of life, many lactating individuals discontinue due to low milk supply, a condition sometimes referred to as chronic lactation insufficiency (CLI). Affecting an estimated 5-15% of lactating individuals, CLI can stem from both extrinsic factors (e.g., infant feeding challenges) and intrinsic ones (e.g., endocrine or metabolic disorders). This qualitative study explored the lived experiences of individuals with CLI and their interactions with healthcare providers (HCPs). Methods: In-depth, semi-structured interviews were conducted with 30 individuals who self-reported experiencing low milk supply, were 18 or older, and were members of the "IGT and Low Milk Supply Support Group" on Facebook, which has approximately 10,700 members. Data were analyzed using phronetic iterative analysis which is a cyclical, reflexive coding approach that emphasizes practical reasoning. Results: Participants reported significant challenges, including: (1) not being believed or taken seriously; (2) facing discrepancies between providers that led to fragmented care; and (3) experiencing a lack of knowledge from HCPs, including lactation consultants. Many described actively seeking a diagnosis and meaningful support but instead receiving inconsistent advice and little to no diagnostic insight into their condition. Conclusions: These findings highlight the urgent need for improved education and training among HCPs to address the complex realities of CLI. They also point to the importance of advancing personalized approaches to breastfeeding support and expanding research to determine causes and diagnostics for low milk supply. By centering patient voices, this study identifies critical gaps in care and communication that prevent effective support for those navigating CLI.