Meaghann S Weaver1, Jacob E Robinson1, Valerie K Shostrom2, Pamela S Hinds3,4. 1. Division of Pediatric Palliative Care, Department of Pediatrics, Children's Hospital and Medical Center, Omaha, Nebraska, USA. 2. Department of Biostatistics, University of Nebraska Medical Center, Omaha, Nebraska, USA. 3. Department of Nursing Science, Professional Practice and Quality, Children's National Health System, Washington, DC, USA. 4. Department of Pediatrics, The George Washington University, Washington, DC, USA.
Abstract
Background: Children in rural geographies are not universally able to access pediatric-trained palliative or hospice providers. Objective: Determine whether telehealth inclusion of a familiar pediatric palliative care provider during the first two home-based hospice visits was acceptable to children, families, and adult-trained home hospice nurses in rural settings. Design: Case series. Setting: Home hospice in rural Midwest. Participants: Patients <18 years of age enrolling in home hospice for end-of-life care. Measurements: The acceptability of telehealth inclusion of a hospital-based pediatric palliative care provider in home hospice visits to the family caregiver and home hospice nurse was measured using the Technology Acceptance Model Questionnaires with the inclusion of the child perspective when possible. Results: Fifteen patients mean age of seven years enrolled. Family caregiver included 11 mothers (73%), 2 grandmothers (13%), and 2 fathers (13%). Fifteen nurses from nine hospice agencies participated. Twelve families (80%) included additional relatives by telehealth modality. Home distance averaged 172 miles with mean eight hours saved by accessing telehealth encounter. Visit content was primarily caregiver support, quality of life, goals of care, symptom management, and medication review. Telehealth acceptability improved between time points and was higher in family caregivers (4.3-4.9 on 5-point scale; p = 0.001) than hospice nurses (3.2-3.8 on 5-point scale; p = 0.05). All children able to self-report stated a "like" for telehealth, citing six reasons such as "being remembered" and "medical knowledge and care planning." Conclusions: Pediatric palliative telehealth visits partnered with in-person hospice nurse offer acceptable access to services, while extending support.
Background: Children in rural geographies are not universally able to access pediatric-trained palliative or hospice providers. Objective: Determine whether telehealth inclusion of a familiar pediatric palliative care provider during the first two home-based hospice visits was acceptable to children, families, and adult-trained home hospice nurses in rural settings. Design: Case series. Setting: Home hospice in rural Midwest. Participants: Patients <18 years of age enrolling in home hospice for end-of-life care. Measurements: The acceptability of telehealth inclusion of a hospital-based pediatric palliative care provider in home hospice visits to the family caregiver and home hospice nurse was measured using the Technology Acceptance Model Questionnaires with the inclusion of the child perspective when possible. Results: Fifteen patients mean age of seven years enrolled. Family caregiver included 11 mothers (73%), 2 grandmothers (13%), and 2 fathers (13%). Fifteen nurses from nine hospice agencies participated. Twelve families (80%) included additional relatives by telehealth modality. Home distance averaged 172 miles with mean eight hours saved by accessing telehealth encounter. Visit content was primarily caregiver support, quality of life, goals of care, symptom management, and medication review. Telehealth acceptability improved between time points and was higher in family caregivers (4.3-4.9 on 5-point scale; p = 0.001) than hospice nurses (3.2-3.8 on 5-point scale; p = 0.05). All children able to self-report stated a "like" for telehealth, citing six reasons such as "being remembered" and "medical knowledge and care planning." Conclusions: Pediatric palliative telehealth visits partnered with in-person hospice nurse offer acceptable access to services, while extending support.
Authors: Kristen Allen Watts; Emily Malone; J Nicholas Dionne-Odom; Susan McCammon; Erin Currie; Jennifer Hicks; Rodney O Tucker; Eric Wallace; Ronit Elk; Marie Bakitas Journal: Res Nurs Health Date: 2021-01-04 Impact factor: 2.228