The impact on the family carer of motor neurone disease and intervention with noninvasive ventilation.
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.


OBJECTIVE
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.


METHODS
The study used qualitative interviews and scaled measures of carer health and well-being completed at three monthly intervals until patient end of life.


METHODS
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 (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.


CONCLUSIONS
NIV 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.
1 School of Health and Related Research, University of Sheffield , Sheffield, United Kingdom .
Susan K
SK
Baxter
Wendy O
WO
Baird
Sue
S
Thompson
Stephen M
SM
Bianchi
Stephen J
SJ
Walters
Ellen
E
Lee
Sam H
SH
Ahmedzai
Alison
A
Proctor
Pamela J
PJ
Shaw
Christopher J
CJ
McDermott
D000368:Aged; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D004739:England; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D016472:Motor Neuron Disease / Q000451:nursing* / Q000523:psychology; D063087:Noninvasive Ventilation / Q000523:psychology*; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology; D011795:Surveys and Questionnaires