Transitions to Home Mechanical Ventilation. The Experiences of Canadian Ventilator-assisted Adults and Their Family Caregivers

Dale, Craig; King, Judy; Nonoyama, Mika; Carbone, Sarah; McKim, Douglas; Road, Jeremy; Rose, Louise

doi:10.1513/annalsats.201708-663oc

Cited by 25 publications

(65 citation statements)

References 31 publications

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“…review after HMV commencement, there was no difference in the need for emergent care or hospital admission. Reasons for this might reflect ongoing disease progression or may relate to the limited availability of community healthcare workers for ventilator-assisted individuals [41].…”

Section: Discussionmentioning

confidence: 99%

Patterns of healthcare utilisation for respiratory complications of adults with neuromuscular disease: a population study

et al. 2018

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Our objective was to quantify health service utilisation including monitoring and treatment of respiratory complications for adults with neuromuscular disease (NMD), identifying practice variation and adherence to guideline recommendations at a population level.We conducted a population-based longitudinal cohort study (2003-2015) of adults with NMD using hospital diagnostic and health insurance billing codes within administrative health databases.We identified 185 586 adults with NMD. Mean age 52 years, 59% female. 41 173 (22%) went to an emergency department for respiratory complications on average 1.6 times every 3 years; 14 947 (8%) individuals were admitted to hospital 1.4 times every 3 years. Outpatient respiratory specialist visits occurred for 64 084 (35%) with four visits every 3 years, although substantial variation in visit frequency was found. 157 285 (85%) went to the emergency department (all-cause) almost 4 times every 3 years, 100 052 (54%) were admitted to hospital. Individuals with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND) had more emergency department visits compared with other types of NMD (p<0.0001).One-third of adults with NMD received respiratory specialist care at a frequency recommended by professional guidelines, although substantial variation exists. Emergent healthcare utilisation was substantial, emphasising the burden of NMD on the healthcare system and urgent need to improve community and social supports, particularly for ALS/MND patients.

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Section: Discussionmentioning

confidence: 99%

Patterns of healthcare utilisation for respiratory complications of adults with neuromuscular disease: a population study

et al. 2018

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“…Previous research investigating transitions to home mechanical ventilation similarly reported patient preference for personalized and ongoing support from respiratory health professionals. 27 Proactive RT educator follow-up detailing an individualized MI-E prescription, user technique, device cleaning, and methods for obtaining replacement parts is supported by growing evidence suggesting that patients with chronic conditions do better with selfmanagement through regular follow-up 28 comprising educational, supportive, or behavioral interventions. 20 Strengths of this study are the inclusion of new and established MI-E users and family caregivers representing variations in age, primary diagnosis, and treatment independence.…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2020

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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 6 SD scores were 8.8 6 1.2 and 8.3 6 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 MI-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.

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“…15 Although not specific to airway clearance, data from a qualitative interview study of 33 individuals receiving home ventilation and their family caregivers also identified a need for home outreach and increased training of community health care providers as potential facilitators to transition to home mechanical ventilation. 21…”

Section: Discussionmentioning

confidence: 99%

Monitoring Cough Effectiveness and Use of Airway Clearance Strategies: A Canadian and UK Survey

et al. 2018

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Transitions to Home Mechanical Ventilation. The Experiences of Canadian Ventilator-assisted Adults and Their Family Caregivers

Abstract: Transition to HMV is a complex and demanding process. Extended HMV training and support may be helpful in mediating adjustment challenges thus reducing stress, caregiver burden and improving health related quality of life for VAIs and family caregivers.

Cited by 25 publications

References 31 publications

Patterns of healthcare utilisation for respiratory complications of adults with neuromuscular disease: a population study

Patterns of healthcare utilisation for respiratory complications of adults with neuromuscular disease: a population study

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

Monitoring Cough Effectiveness and Use of Airway Clearance Strategies: A Canadian and UK Survey

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