A qualitative study of healthcare workers' and patients' perspectives on changing the model of care from outpatient to in-home for the infusion of natalizumab

Abstract

This study is part of a larger project that examines the safety and clinical effectiveness, acceptability and cost effectiveness of flexible delivery of natalizumab by ambulatory care nurses for people with multiple sclerosis. Currently, people with multiple sclerosis receive natalizumab intravenous infusions through an outpatient intravenous therapy service. Using a hospital in the home model to offer people with multiple sclerosis natalizumab infusions in their own home could be an improved model of care for patients. However, no previous qualitative research has focused on healthcare workers’ and patients’ experiences of a change in the model of care from outpatients to the home for the infusion of natalizumab. This Masters by Research is by publication and includes two published studies as follows. The first stage of this study aimed to understand the experiences of people with multiple sclerosis who received infusions of natalizumab at home instead of in hospital. Returning every four weeks to an outpatient department to complete an intravenous infusion can be taxing for patients with chronic disease. This exploratory-descriptive study incorporated face-to-face digital-recorded interviews with people with multiple sclerosis. Twelve people with multiple sclerosis (two males and 10 females) aged between 18 and 56 years participated in this study. A major theme that emerged from the findings was the importance of ‘patient-centredness’, or the positive contribution of having patients at the centre of care when delivering home infusions. This encompassed three subthemes: ‘in the comfort of their own home’, ‘convenience for patients and their families’ and ‘saving time and money’. Patient-centred care was an important part of the model of care because it provided flexibility for the participants in managing their home and work–life commitments. Although home infusion therapy requires a team approach, this study found that delivering patient-centred home infusions provided significant satisfaction for people with multiple sclerosis. The second stage of this study explored healthcare workers’ experiences of delivering natalizumab infusions in a home environment. In this exploratory-descriptive inquiry, the researcher sought to gain an understanding of healthcare workers’ perspectives on the patient-centred model of care of home infusions of natalizumab. There were 12 participants from two main groups of healthcare workers who participated in delivering natalizumab infusions during the six-month study period. Four participants were from a private provider of home nursing care and eight were from a tertiary hospital ambulatory care day unit. Thematic analysis of the data identified three overarching themes: ‘preparing for change’, ‘focussing on the patient’, and ‘professional support’. Healthcare workers’ practice experience is an important component of patient-centred care during the delivery of an infusion at a patient’s home and flexible processes are required to deliver quality home care. Flexibility, communicating clearly and being willing to work in a team, especially between the hospital and the home nursing staff, were important factors in the safe delivery of infusions at home. Managing the logistics of delivering a flexible and safe home therapy service, though time consuming, was an important part of this patient-centred model of care.