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Homestead together: Pediatric palliative care telehealth support for rural children with cancer during home‐based end‐of‐life care
Author(s) -
Weaver Meaghann S.,
Shostrom Valerie K.,
Neumann Marie L.,
Robinson Jacob E.,
Hinds Pamela S.
Publication year - 2021
Publication title -
pediatric blood and cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.116
H-Index - 105
eISSN - 1545-5017
pISSN - 1545-5009
DOI - 10.1002/pbc.28921
Subject(s) - telehealth , medicine , palliative care , family medicine , pediatric cancer , quality of life (healthcare) , family caregivers , pediatric oncology , nursing , telemedicine , cancer , health care , economics , economic growth
Background Children with terminal cancer and their families describe a preference for home‐based end‐of‐life care. Inadequate support outside of the hospital is a limiting factor in home location feasibility, particularly in rural regions lacking pediatric‐trained hospice providers. Methods The purpose of this longitudinal palliative telehealth support pilot study was to explore physical and emotional symptom burden and family impact assessments for children with terminal cancer receiving home based‐hospice care. Each child received standard of care home‐based hospice care from an adult‐trained rural hospice team with the inclusion of telehealth pediatric palliative care visits at a scheduled minimum of every 14 days. Results Eleven children (mean age 11.9 years) received pediatric palliative telehealth visits a minimum of every 14 days, with an average of 4.8 additional telehealth visits initiated by the family. Average time from enrollment to death was 21.6 days (range 4‐95). Children self‐reported higher physical symptom prevalence than parents or hospice nurses perceived the child was experiencing at time of hospice enrollment with underrecognition of the child's emotional burden. At the time of hospice enrollment, family impact was reported by family caregivers as 46.4/100 (SD 18.7), with noted trend of improved family function while receiving home hospice care with telehealth support. All children remained at home for end‐of‐life care. Conclusion Pediatric palliative care telehealth combined with adult‐trained rural hospice providers may be utilized to support pediatric oncology patients and their family caregivers as part of longitudinal home‐based hospice care.