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Neuromuscular disease

Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease

Objectives: This study aims to evaluate the costs of informal care for children with neuromuscular disease and evaluate how physical and psychological health is associated with socio-demographic variables. Methods: A cross sectional design was used with a convenience sample of 110 carers that participated in this study. Participants were recruited from Spanish hospitals and rare diseases organizations. Economic costs and sociodemographic aspects were assessed using the economic costs questionnaire and the sociodemographic questionnaire.

Wed, 02/09/2022 - 11:56

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.

Fri, 03/19/2021 - 13:18