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J Child Neurol. 2019 Feb;34(2):104-112. doi: 10.1177/0883073818811544. Epub 2018 Dec 5.

Bereaved Parents More Satisfied With the Care Given to Their Child With Severe Spinal Muscular Atrophy Than Nonbereaved.

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1 Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, Stockholm, Sweden.
2 The Department of Women's and Children's Health, Paediatric Oncology and Haematology, Childhood Cancer Research Unit, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden.
3 The Department of Women's and Children's Health, Paediatric Neurology, Karolinska Institutet, Karolinska University Hospital, Astrid Lindgren Children's Hospital, Stockholm, Sweden.
4 National Rehabilitation Center for Neuromuscular Diseases (RCFM), Aarhus, Denmark.



Children with severe spinal muscular atrophy have complex care needs due to progressive muscle weakness, eventually leading to respiratory failure. To design a care system adapted to families' needs, more knowledge about parents' experience of care and its coordination between settings is required. This study explores (1) whether parents felt that health professionals took every opportunity to help the child feel as good as possible, (2) parents' satisfaction with various care settings, and (3) parents' satisfaction with coordination between settings.


Data derive from nationwide Swedish and Danish surveys of bereaved and nonbereaved parents of children with severe spinal muscular atrophy born between 2000 and 2010 in Sweden and 2003 and 2013 in Denmark (N = 95, response rate = 84%). Descriptive statistics and content analysis were used.


Although most of the parents reported that care professionals had taken every opportunity to help the child feel as good as possible, one-third reported the opposite. Bereaved parents were significantly more satisfied with care than nonbereaved (81% vs 29%). The children received care at many different locations, for all of which parents rated high satisfaction. However, some were dissatisfied with care coordination, describing lack of knowledge and communication among staff, and how they as parents had to take the initiative in care management.


This study highlights the importance of improving disease-specific competence, communication and knowledge exchange among staff. For optimal care for these children and families, parents should be included in dialogues on care and staff should be more proactive and take care management initiatives.


care coordination; health care professional; neuromuscular disease; parental perception; pediatric palliative care; spinal muscular atrophy

[Indexed for MEDLINE]

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