When control becomes a matter of life: a phenomenological exploration of intestinal failure patients’ lived experience receiving assistance from home care nurses in home parenteral nutrition management

Background: Parenteral nutrition (PN) provides the body with essential nourishment through intravenous infusion. Home parenteral nutrition (HPN) has a significant impact on the lives of its users; however, very few studies explore the phenomenon of homecare nurse provided assistance for the management and administration of HPN. Method: The phenomenological approach, Reflective Lifeworld Research, was utilised. Data were collected through semi-structured interviews with five patients with intestinal failure. The analysis was performed according to the instructions of Reflective Lifeworld Research. Results: Four constituents were identified: (1) balanced nursing experience, (2) correct handling of procedures, (3) reversed expert roles and (4) the homecare nurse as a lifeline. Control was found to be the essence of the phenomenon, multi-faceted and characterised by the participants’ ambivalent feelings. Conclusion: The participants were ambivalent about receiving assistance from the homecare nurses. HPN is a complex treatment in which demands are placed on the homecare nurses’ competencies to deliver a high quality of care. The patients live with a constant fear of complications and hospitalisations. The participants felt compelled to perform control, monitoring the homecare nurses’ work, to ensure that errors did not occur. As more assistance was received from homecare nurses, the participants experienced a loss of control. However, the assistance did also give a sense of security, whereby the homecare nurse was perceived as a lifeline. From a sociological perspective, the need for control can be a result of the constant development of society, where greater demands were placed on citizens’ commitment and responsibility for their own treatment, prompting a larger need for individual control.