OBJECTIVES: 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.
OBJECTIVES: 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.
Authors: Erica C Kaye; Jonathan Jerkins; Courtney A Gushue; Samantha DeMarsh; April Sykes; Zhaohua Lu; Jennifer M Snaman; Lindsay Blazin; Liza-Marie Johnson; Deena R Levine; R Ray Morrison; Justin N Baker Journal: J Pain Symptom Manage Date: 2018-02-08 Impact factor: 3.612
Authors: Kimberley Widger; Dawn Davies; Adam Rapoport; Christina Vadeboncoeur; Stephen Liben; Amrita Sarpal; Simone Stenekes; Claude Cyr; Lysanne Daoust; Marie-Claude Grégoire; Marli Robertson; Heather Hodgson-Viden; Julie Laflamme; Harold Siden Journal: CMAJ Open Date: 2016-10-11
Authors: Shayan Cheraghlou; Evelyne A Gahbauer; Linda Leo-Summers; Hans F Stabenau; Sarwat I Chaudhry; Thomas M Gill Journal: Am J Med Date: 2016-03-08 Impact factor: 4.965
Authors: Erica C Kaye; Courtney A Gushue; Samantha DeMarsh; Jonathan Jerkins; April Sykes; Zhaohua Lu; Jennifer M Snaman; Lindsay Blazin; Liza-Marie Johnson; Deena R Levine; R Ray Morrison; Justin N Baker Journal: Pediatr Blood Cancer Date: 2017-12-08 Impact factor: 3.167
Authors: Bella S Ehrlich; Narine Movsisyan; Tsetsegsaikhan Batmunkh; Ella Kumirova; Marina V Borisevich; Kirill Kirgizov; Dylan E Graetz; Michael J McNeil; Taisiya Yakimkova; Anna Vinitsky; Gia Ferrara; Chen Li; Zhaohua Lu; Erica C Kaye; Justin N Baker; Asya Agulnik Journal: Cancer Date: 2020-06-12 Impact factor: 6.860