Aim: The aim of this study was to describe the experiences of district nurses in caring for patients with home-parenteral nutrition (HPN) in palliative care.
Method: A qualitative approach was adopted using thematic content analysis of semi-structured interviews. Twelve district nurses working with primary health care in Sweden participated in the study that was conducted during 2011.
Findings: The analysis resulted in one overarching theme: The agony of terminating hope and three categories: all focus is on the infusion, alone without support, confidence in the relationship. HPN seemed to have a symbolic meaning when patients and family members connected the infusion with hope and life. District nurses expressed that they felt alone with the responsibility for the HPN due to the lack of a structured plan. Difficult discussions around termination of the infusion seemed to be connected to a feeling of agony of terminating hope among the district nurses. All district nurses expressed a need for support in their work, and factors like experience and the development of a good relationship with the patient and the family, could decrease the agony.
Conclusion: The draw up of a plan when starting HPN, could be a support for the district nurse and make the aim, follow-up and future termination clearer. The establishment of a plan could make the work easier and reduce the feeling of agony of terminating hope among the district nurses.
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