The dying child: Room for improvement in end-of-life care

May 27, 2016

Cincinnati, OH, May 27, 2016 -- Many pediatricians and pediatric subspecialists believe that their clinical care extends from treating ill children through end-of-life care. However, are pediatricians actually meeting the needs of families and their dying child? In a new study scheduled for publication in The Journal of Pediatrics, researchers surveyed bereaved parents and found that pediatric end-of-life care needs improvement.

Dr. Malin Lövgren and researchers from Ersta Sköndal University College and Karolinska Institute in Stockholm, Sweden, surveyed 48 parents of children who did not survive spinal muscular atrophy (SMA) type I or II. SMA is a rare disorder characterized by slowly progressing muscle weakness; most children with the most severe forms, type I and II, die within the first two years of life without respiratory support. According to Dr. Lövgren, "This survey aimed to explore the experiences and wishes of bereaved parents concerning end-of-life care for their child." The survey covered the time from diagnosis to after death, and included questions about their experiences with end-of-life care and their perceived role in decision making.

Thirty-two parents expressed wishes regarding where they wanted their child to die, half of whom wanted their child to die at home instead of the hospital. All of those who wanted their child to die in the hospital had their wishes fulfilled, but only 62% of those who wanted their child to die at home got their wish. Siblings were rarely engaged in the process; only four of 24 siblings received professional psychological support after the death of a brother or sister. Although 83% of parents reported that health care staff said or did something in connection with the death of the child that was remembered as being especially supportive or considerate, more than 25% reported that health care staff did or said something distressing at the end of life.

Although the results show that health care staff typically provide strong support for families, more work needs to be done. Siblings have long been overlooked, and their need for continued support should be addressed. "Health care staff have found meaning and satisfaction from their role in bereavement care, but they experience logistical barriers, lack of training, and lack of support," notes Dr. Lövgren. In general, everyday clinical practices may need to be altered or even radically changed to ensure that both families and health care staff receive the bereavement support they need.
-end-


Elsevier Health Sciences

Related Siblings Articles from Brightsurf:

Stars and planets grow up together as siblings
ALMA shows rings around the still-growing proto-star IRS 63

Study of siblings finds moderate cannabis use impacts cognitive functioning
A new study led by researchers from the University of Colorado School of Medicine compares adolescent siblings to determine the impact of early and frequent use of marijuana on cognitive function.

Child disability can reduce educational outcomes for older siblings
A recent paper published in The Economic Journal indicates that, in families with disabled children, the second born child is more adversely affected cognitively than the first-born child.

Siblings of children with intellectual disabilities score high on empathy and closeness
A new Tel Aviv University and University of Haifa study finds that relationships between children and their siblings with intellectual disabilities are more positive than those between typically developing siblings.

Genome testing for siblings of kids with autism may detect ASD before symptoms appear
One of the key priorities of interventions for autism spectrum disorder (ASD) is starting early, with some evidence showing infants as young as seven months old could benefit.

New study debunks myth that only children are more narcissistic than kids with siblings
The stereotype that only children are selfish, or more self-centered than those with siblings is sometimes used as an argument for having more than one child, but researchers from Germany find there's no evidence for the claim that only children are more narcissistic than children with sibling.

Children bullied by friends and siblings are more likely to think about suicide in their early 20s
Depression, self-harm and suicidal ideation are more prominent in adults in their early twenties if they were bullied at home and at school, a study by researchers at the University of Warwick have found.

UBC study finds siblings of problem gamblers also impulsive, prone to risk-taking
Biological siblings of people with gambling disorder also display markers of increased impulsivity and risk-taking, according to a new UBC psychology study.

Québec siblings with rare orphan disease lead to discovery of rare genetic diseases
Mutations in a gene involved in brain development have led to the discovery of two new neurodevelopmental diseases by an international team led by researchers at McGill University and CHU Sainte-Justine Research Center.

The more the merrier? Children with multiple siblings more susceptible to bullying
A child with more than one brother or sister is more likely to be the victim of sibling bullying than those with only one sibling, and firstborn children and older brothers tend to be the perpetrators, according to research published by the American Psychological Association.

Read More: Siblings News and Siblings Current Events
Brightsurf.com is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com.