Browse Items (3 total)

BACKGROUND AND AIMS:: 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…

OBJECTIVE: Our aim was to explore bereaved siblings' positive and negative memories and experiences of their brother's or sister's illness and death. METHOD: In our nationwide Swedish study, 174 of 240 (73%) bereaved siblings participated, and 70%…

OBJECTIVE:
To explore experiences and wishes of bereaved parents concerning end-of-life care for their child with severe spinal muscular atrophy.

STUDY DESIGN:
A follow-up survey was conducted in 2013 on parents of deceased Swedish children who were…
Output Formats

atom, dcmes-xml, json, omeka-xml, rss2