Experiences of adult patients living with home parenteral nutrition: a grounded theory study. A qualitative research into the experiences of home parenteral nutrition: discovery of patients’ perspectives.

Abstract

Introduction Patients with intestinal failure (IF) develop problems of malabsorption and malnutrition associated with short bowel syndrome (SBS). Home parenteral nutrition (HPN) became available to treat these patients since the 1970s. There is a paucity of qualitative research on patients’ experiences in the UK. The study aim was to generate theory that explains the experiences of adults living with HPN and complex medication regimens. Method The grounded theory methodology was used to explore the experiences and to generate theory about this health intervention. Twelve participants were interviewed. The interviews were recorded and transcribed verbatim. The joint process of data collection and analysis followed the principles of constant comparative approach. Results The core categories of stoma care and HPN treatment were supported by the subcategories of maintaining stoma output, access to toilets, maintaining HPN infusion routine, access to technical help to set up HPN infusion, and general health changes. Strategy used to manage living with loss was demonstrated by the subcategory of maintaining daily activities and social interactions. Discussion The theory of living with loss suggests that patients with a stoma receiving HPN experience the sense of loss at home and in social situations. Opportunities for professional practice development are detailed along with implications for future research. Conclusions The findings resonate with the Kubler-Ross Model of the five stages of grief (Kubler-Ross, 1970). The theory of living with loss was generated by the use of the grounded theory methodology. This study identified opportunities for changes and improvement in clinical practice.