The Impact on the Family Carer of Motor Neurone Disease and Intervention with Noninvasive Ventilation

Abstract Background: The diagnosis of motor neurone disease (MND) has a profound effect on the functioning and well-being of both the patient and their family, with studies describing an increase in carer burden and depression as the disease progresses. Aim: This study aimed to assess whether patient use of noninvasive ventilation (NIV) impacted on their family carer, and to explore other sources of carer burden. Design: The study used qualitative interviews and scaled measures of carer health and well-being completed at three monthly intervals until patient end of life. Participants: Sixteen family carers were followed up over a period ranging from one month to two years. Results: NIV was perceived as having little impact on carer burden. The data however highlighted a range of sources of other burdens relating to the physical strain of caring. The Medical Outcomes Study Short Form (SF-36 Health Survey) Physical Component Summary (PCS) scores were considerably below that of the Mental Component Summary (...