Sleep quality of mother-caregivers of Duchenne muscular dystrophy patients

Abstract

Our results suggest that caregiver-mothers of sons with DMD have poor quality of sleep, and the length of use of noninvasive ventilation of their sons is associated with better sleep of caregiver-mothers.

Parents of children referred to a sleep laboratory for disordered breathing reported anxiety, daytime sleepiness and poor sleep quality

“…Parents of ventilator‐assisted children may experience deficient sleep with sleep instability, which is related to health‐related quality of life . On the other hand, NIV was reported to improve sleep quality in the mothers of patients with Duchenne muscular dystrophy . The present study did not reveal any significant differences in anxiety, depression, sleep quality and quality of life between the parents of children who were not treated or were treated with CPAP/NIV.…”

“…Having a child with a chronic disease may also have a negative impact on a parent's well‐being. Indeed, numerous studies have reported that the parents of children affected by a large range of chronic diseases, such as atopic dermatitis, asthma, cystic fibrosis, neuromuscular diseases, autism, epilepsy and disabilities, suffer from impaired quality of sleep and quality of life, high levels of anxiety and depression and family problems . Moreover, it has been reported that parents who spend an average of one hour per night nursing their child have interrupted sleep, difficulties falling asleep and, as a consequence, chronic exhaustion .…”

Duchenne muscular dystrophy and caregiver burden: a systematic review

“…Caregivers to patients with DMD have also been found to have problems with various aspects of their sleep, including sleep latency, reduced sleep efficiency, daytime dysfunction, and poor sleep quality . In addition, Magliano et al .…”

“…In total, seven articles measured overall caregiver burden, [9][10][11][12][13][14]22 five HRQoL, [10][11][12][13][14] four stress, 14,[16][17][18] six work life, informal care, and/or associated cost burden, 11,[19][20][21][22]28 five family problems and functioning, 9,14,15,23,24 six sleep, 13,15,21,[25][26][27] five pain and/or discomfort, 12,13,21,23,24 two strain, 13,28 nine anxiety and/or depression, [12][13][14][15]23,24,[26][27][28] two overall caregiver health, 23,24 one self-esteem and mastery (i.e. that life chances are under one's own control), <...>…”

“…Providing informal care to a patient with DMD has been found to be associated with a non-trivial overall burden, including, but not limited to, impaired health and HRQoL, [10][11][12][13][14]23,24 poor sleep quality, 13,15,21,[25][26][27] What this paper adds • A substantial body of evidence describes caregiver burden in Duchenne muscular dystrophy.…”