Understanding burden of treatment in adult home enteral tube feeding: A qualitative interpretive description

BACKGROUND AND AIMS: Experiences of adults receiving Home Enteral Tube Feeding (HETF) globally highlight self-management as taxing, although this phenomenon has remained insufficiently theorized to facilitate system-level interventions. This study aimed to identify and understand patterns in the way adults receiving HETF in Australia and their carers describe and explain their experiences of treatment burden. METHODS: This study is an interpretive description informed by Burden of Treatment Theory to examine what constitutes treatment burden in adults receiving HETF in Australia and their carers. Two methods of data collection were employed. Consenting participants first completed an online questionnaire collecting demographic and clinically relevant information. In-depth, semi-structured interviews were then conducted over Zoom with twelve purposely sampled participants and analyzed inductively and deductively using Framework Analysis. RESULTS: Nine HETF recipients and three carers were interviewed. HETF treatment burden was conceptualized as consisting of three inter-related components. "Essential treatment work" and the "impact of treatment" constituted the key elements of treatment burden which could be intensified by contextual "amplifiers of burden." A universal HETF workload was described with baseline workload dependent on HETF treatment complexity. The perceived negative impact of the treatment was influenced by baseline workload and personal perspective. CONCLUSION: Findings showcase the unique burden associated with HETF, conceptualized through a lens of treatment burden. Structuring experiences of HETF in this way could inform development of a patient-reported measure to facilitate more responsive and equitable care for adults requiring HETF.