Aim. The aim of this study is to describe the quality, quantity and content of care given to home parenteral nutrition-dependent patients by various professionals in the Netherlands and to detect potential shortcomings.
Background. Home parenteral nutrition is a lifesaving treatment for patients who cannot eat or cannot eat sufficiently. Very little is known about follow-up care after hospital stay. Yet this is an important aspect of care as patients must cope with high-tech skills at home. Also, complications and psychosocial complaints can occur.
Methods. A patient questionnaire was used to assess contacts with professionals and possible shortcomings in care. Nursing files from home parenteral nutrition nurses were reviewed for information from all contact moments. Home parenteral nutrition nurses and home care teams were interviewed to assess nursing care and to detect bottlenecks.
Results. The nutrition support team was primarily responsible for the home parenteral nutrition care. Physical complaints like abdominal pain or nausea and venous access problems like fever were discussed most often. Patients were satisfied about the nutrition support team, but both the patients and the home parenteral nutrition nurses reported that relatively little attention was paid to psychosocial problems. Furthermore, the included patients visited their General Practitioner 11 times per year on average (range 1–104). Patients experienced a bottleneck with respect to the general practitioner’s knowledge of home parenteral nutrition-related matters.
Conclusion. Home parenteral nutrition patients visit the nutrition support team and their general practitioner most frequently and much attention is paid to medical and physical problems. Psychosocial problems, however, were only discussed in a minority of patients, and this was experienced as a shortcoming.
Relevance to clinical practice. Both the patients and the home parenteral nutrition nurses reported that relatively little attention was paid to psychosocial problems. Patients’ concerns must be integrated in contact moments to enhance Quality of Life.