Patients' and their caregivers' experiences with home parenteral nutrition: a qualitative study using the Donabedian model.

BACKGROUND

Home parenteral nutrition is a life-sustaining therapy for patients with chronic intestinal failure, increasingly delivered in the home setting worldwide. While home parenteral nutrition supports nutritional status, survival, and functional independence, it also transfers complex clinical responsibilities to patients and family caregivers, raising concerns about care quality and safety. This study aimed to explore patients' and primary caregivers' experiences of home parenteral nutrition and to identify structural, process-related, and outcome-related factors influencing care quality and safety, guided by the Donabedian model.

METHODS

An interpretive descriptive qualitative design was used. Semi-structured interviews and structured home-based observational assessments were conducted with 22 participants (11 adult patients and 11 primary caregivers) recruited from a tertiary university hospital in Turkiye. Interviews explored lived experiences of home parenteral nutrition, while observations focused on caregivers' adherence to aseptic technique during parenteral nutrition preparation, catheter care, and infusion procedures. Data were analysed using directed content analysis guided by Donabedian's structure-process-outcome framework.

RESULTS

Nine themes were identified across the three domains of the Donabedian model. Structural factors included the critical role of comprehensive discharge education, challenges in establishing safe home environments, and the absence of professional home care services. Process-related findings revealed frequent deviations from standard protocols, influenced by procedural complexity, emotional distress, and limited access to reimbursed supplies. Outcome-related experiences encompassed catheter-related complications, reduced quality of life, substantial caregiver burden, and mixed satisfaction with care.

CONCLUSION

This study demonstrates that safe and high-quality home parenteral nutrition depends on more than technical training alone. Integrated post-discharge support, continuous caregiver education, and accessible home care services are essential to reduce complications and caregiver burden. Strengthening health system structures is crucial to ensure quality and safety in home parenteral nutrition care.