• Susan K Baxter, Wendy O Baird, Sue Thompson, Stephen M Bianchi, Stephen J Walters, Ellen Lee, Sam H Ahmedzai, Alison Proctor, Pamela J Shaw, and Christopher J McDermott.
• 1 School of Health and Related Research, University of Sheffield , Sheffield, United Kingdom .
• J Palliat Med. 2013 Dec 1; 16 (12): 1602-9.

BackgroundThe 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.AimThis study aimed to assess whether patient use of noninvasive ventilation (NIV) impacted on their family carer, and to explore other sources of carer burden.DesignThe study used qualitative interviews and scaled measures of carer health and well-being completed at three monthly intervals until patient end of life.ParticipantsSixteen family carers were followed up over a period ranging from one month to two years.ResultsNIV 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 (MCS) score at baseline and at all following time points. Carers described the physical effort associated with patient care and role change; the challenge inherent in having time away; and problems relating to the timing of equipment and service delivery.ConclusionsNIV can be recommended to patients without concerns regarding increasing carer burden. The predominant source of burden described related to the physical impact of caring for a patient with MND. Services face challenges if this physical burden is to be reduced by providing equipment at an optimal time and successfully coordinating their input.

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