Education Experiences of Adult Subjects and Caregivers for Mechanical Insufflation-Exsufflation at Home

BACKGROUND: In 2014, the Ministry of Health of Ontario, Canada, approved a program of public funding for specialist-prescribed mechanical insufflation-exsufflation (MI-E) devices for home use by individuals with neuromuscular respiratory insufficiency. Since 2014, 1,926 MI-E devices have been provided, exceeding device-use projections. Few studies describe the initial and ongoing education and support needs of home MI-E users and their family caregivers. This study aimed to explore the requirements of initial and ongoing education and support for MI-E device use, user confidence, and barriers and facilitators to home MI-E. METHODS: We conducted semi-structured interviews with new (< 6 months) and established (6-48 months) MI-E users and family caregivers. Device users rated their confidence on a numeric rating scale of 1 (not confident) to 10 (very confident). RESULTS: We recruited 14 new and 14 established MI-E users and caregivers (including 9 dyads), and we conducted 28 interviews. Both new and established users were highly confident in use of MI-E (mean +/- SD scores were 8.8 +/- 1.2 and 8.3 +/- 2.1, respectively). Overall, the subjects were satisfied with their initial education, which consisted of a 1-2 h one-on-one session at home or in the clinic with a device demonstration and hands-on practice. Subjects viewed hands-on practice and teaching of caregivers as more beneficial than written materials. Ongoing support for device use was variable. Most subjects indicated a lack of specific follow-up, which resulted in uncertainty about whether they were using the MI-E device correctly or whether MI-E was effective. Facilitators to device utilization were ease of use, initial training, support from formal or informal caregivers, and symptom relief. Barriers were inadequate education on MI-E purpose, technique, and benefit; lack of follow-up; and inadequate knowledge of MI-E by nonspecialist health providers. CONCLUSIONS: The current model of home M1-E education at initiation meets user and caregiver needs. Better ongoing education and follow-up are needed to sustain the benefits through assessment of MI-E technique and its effectiveness.