Participation and mental well-being of mothers of home-living patients with spinal muscular atrophy

•A substantial part of mothers of patients with SMA perceive a high caregiver burden.•Emotional well-being is comparable between mothers of children and adults with SMA.•Participation in leisure activities is strongly related to emotional well-being. Proximal spinal muscular atrophy (SMA) causes sev...

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Published in:	Neuromuscular disorders : NMD Vol. 29; no. 4; pp. 321 - 329
Main Authors:	Cremers, C.H., Fischer, M.J., Kruitwagen-van Reenen, E.T., Wadman, R.I., Vervoordeldonk, J.J., Verhoef, M., Visser-Meily, J.M., van der Pol, W.L., Schröder, C.D.
Format:	Journal Article
Language:	English
Published:	England Elsevier B.V 01-04-2019
Subjects:	Adolescent Adult Burden Caregiver Caregivers - psychology Child Child, Preschool Cost of Illness Emotional distress Female Humans Leisure Activities - psychology Male Middle Aged Mothers - psychology Muscular Atrophy, Spinal - nursing Participation Personal Satisfaction Psychological Distress Satisfaction Social Participation - psychology Spinal muscular atrophy Young Adult Participation Burden Emotional distress Caregiver Satisfaction Spinal muscular atrophy
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Summary:	•A substantial part of mothers of patients with SMA perceive a high caregiver burden.•Emotional well-being is comparable between mothers of children and adults with SMA.•Participation in leisure activities is strongly related to emotional well-being. Proximal spinal muscular atrophy (SMA) causes severe physical limitations but also has a major impact on the lives of parents. The aim of this study was to investigate participation and mental well-being (burden, emotional distress and satisfaction with participation) of parents of home-living patients with SMA. Caregiver burden was assessed with the Caregiver Strain Index, emotional distress with the Hospital Anxiety and Depression Scale and satisfaction with participation with the Utrecht Scale for Evaluation of Rehabilitation-Participation. Because the majority of parents were mothers of home-living SMA patients (76%), further analyses were restricted to mothers. Seventy-seven percent of mothers of patients with SMA had paid work. A substantial proportion of mothers (76%) perceived high caregiver burden. Burden, emotional distress and satisfaction with participation were comparable between mothers of children and mothers of adults with SMA. Caregivers’ participation in leisure activities was significantly related to their perceived level of caregiver burden, emotional distress and satisfaction with participation. Mothers engaging in more social and leisure activities reported lower emotional distress and caregiver burden. Considering the high level of burden attention should be paid to mental well-being of primary caregivers of patients with SMA. Caregivers should be motivated to keep participating in social/leisure activities.
Bibliography:	ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 23
ISSN:	0960-8966 1873-2364
DOI:	10.1016/j.nmd.2019.02.011