Patient education is a recognised role of the Registered Nurse(1). Literature regarding patient participation in the care of parenteral infusion illustrates that it is possible for patients to learn and safely perform clinical procedures(Reference Davidson2). Powell-Tuck(Reference Powell-Tuck, Nielsen, Farwell and Lennard-Jones3)et al. reported the first patients to be discharged into the community with home parenteral infusion therapy more than thirty years ago. The aim of home therapy was to improve an individual's quality of life by avoiding a life time of hospitalisation. Although national guidelines emphasise the importance of instructing patients(4, 5, 6), there is a lack of primary literature to support the educational needs of this group of patients. Secondary literature within this specialist area has the focus on facilitating the development of skills associated with the administration of the infusion. Although there is evidence of the psychological and social impact of this condition on the individual(Reference Baxter, Fayers and McKinley7, Reference Stern, Jacyna and Lloyd8), interventions and strategies with the purpose of preparing patients for coping with life with a chronic illness are limited.
The aim of this descriptive phenomenological study was to explore the lived experience of adult patients with intestinal failure who require parenteral infusion therapy learning to self-care. Participants were interviewed to obtain data relating to their experience of learning to self care. Using Colaizzi's(Reference Colaizzi9), method of data analysis the participant accounts were transformed into an ‘exhaustive description’ of their experience. Eight adult patients were interviewed who had recently undertaken training at a national centre for intestinal failure; to self administer parenteral infusion therapy.
The analysis identified that the participants experience was structured around the themes of: becoming knowledgeable, structured learning, living with intestinal failure and the learning environment. The results show that patients learn both through; structured encounters, experiencing their condition and therapy, and interacting in the health care environment including encounters with their peers.
The process of learning infusion therapy has not been previously documented within a research methodology. Significant aspects of the structured teaching for the participants were the contribution of the nurse specialist and the process of instruction. Informal learning occurred through modelling, trial and error and problem solving. The health care environment was seen as an area of expertise and knowledge. Patients benefited from being with others who had similar therapies. On-going learning about their altered gastrointestinal function continued beyond discharge.
Findings of this study can be used in the development of the service locally and nationally as well as for the educational preparation of nurses preparing patients for parenteral infusion therapy.
