The lived experience of home total parenteral nutrition: an online qualitative inquiry with adults, children, and mothers.

BACKGROUND: The purpose of this study was to access a sample of short-bowel patients receiving home total parenteral nutrition (HTPN) in their home environment and describe their HTPN experience using qualitative methodology. METHODS: Three semistructured, open-ended, in-depth interviews were conducted online over a 5-month period with 6 adults (aged 27 to 45 years) who received HTPN for 2 to 8 years, 3 children (aged 8 to 10 years) receiving HTPN since birth, and the children's mothers. The constant comparison method was used to code and categorize data, inductively develop themes, and create a taxonomy (flow chart) of themes from the data. Credibility of data analysis and themes was established by the prolonged engagement with subjects and subject review of themes identified. RESULTS: Six major themes emerged: affirmation of life, infusion-related complications, lifestyle adaptations, self-worth, isolation, and food intake. Within most themes, subjects described similar concerns and reactions. A clear difference occurred within the theme of food intake. Adults reported feeling constantly hungry and challenged with resisting temptation to eat restricted foods. They admitted to lack of consistency in following dietary restrictions and repeated attempts to consume contraindicated foods. Children expressed lack of desire for food and mothers complained of their children's refusal to eat. CONCLUSIONS: Using qualitative methods allowed insight into the HTPN experience and depiction of the daily challenges of being total parenteral nutrition-dependent from patients' and caregivers' perspectives. It provides insight into their reactions and behaviors. By gaining this type of awareness and understanding, clinical protocols and services can be planned that are more likely to derive successful outcomes.