Browse Items (8 total)

Siblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with…

OBJECTIVES: The loss of a child is a devastating event, and bereaved parents often suffer intense and long-lasting grief reactions and are at risk for psychological symptoms. More knowledge about how parents cope with grief may improve the support to…

BACKGROUND: For children with life-limiting conditions home care is a key component of pediatric palliative care. However, poor information is available on service coverage and in particular on country-specific pediatric palliative home care…

Siblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with…

Being a parent of a child with spinal muscular atrophy (SMA), a disease that causes progressive muscle weakness, involves a range of challenges. The purpose of this study was to explore what advice parents of children with severe SMA, in absence of…

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