Effectiveness of a pediatric palliative home care team as experienced by parents and health care professionals.
OBJECTIVE
Little data are available on palliative home care for children. The objective of this study was to evaluate the effectiveness of a specialized pediatric palliative home care team (PPHCT) as experienced by parents and health care professionals (HCPs).


METHODS
Parents and HCPs involved in the care of terminally ill children who died and whom the PPHCT was in charge of were surveyed with questionnaires focusing on satisfaction with the PPHCT, satisfaction with the course of the dying phase, and the development of anxiety, depression, and prolonged grief disorder.


RESULTS
Forty-three parent dyads participated (return rate, 88%). Satisfaction with the PPHCT scored a median of 10 (numeric rating scale, 0-10). The child's death was predominantly experienced as very peaceful (median, 9); 71% died at home. According to parents, involvement of the PPHCT led to highly significant (p<0.001) improvements in the children's symptoms and quality of life, as well as in aspects of communication and administrative barrier reduction. Anxiety was detected in 25% of parents, depression in 19%, and prolonged grief disorder in 13%. HCPs (return rate, 83%) evaluated all investigated care domains (particularly cooperation/communication/family support) as being significantly improved (p<0.001). Thirty-five percent of HCPs felt uncertain concerning pediatric palliative care; 79% would welcome specific training opportunities.


CONCLUSIONS
Involvement of a PPHCT is experienced as a substantial improvement of care by parents and HCPs. Coordination of palliative care during the last phase of life appears to be an important quality factor for the home care of dying children and their families.
Coordination Center for Pediatric Palliative Care, Interdisciplinary Center for Palliative Medicine and Dr. von Haunersches Kinderspital, Ludwig-Maximilians-University Munich, Munich, Germany. rene_vollenbroich@hks12.harvard.edu
René
R
Vollenbroich
Ayda
A
Duroux
Monika
M
Grasser
Monika
M
Brandstätter
Gian Domenico
GD
Borasio
Monika
M
Führer
D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D003258:Consumer Behavior; D005260:Female; D006282:Health Personnel; D006699:Home Care Services; D006801:Humans; D007223:Infant; D008297:Male; D010166:Palliative Care; D010290:Parents; D010348:Patient Care Team; D011795:Surveys and Questionnaires; D016896:Treatment Outcome; D055815:Young Adult