Graduation Date

Summer 8-13-2021

Document Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

First Advisor

Alfred L. Fisher, MD, PhD

Second Advisor

Paul Estabrooks, PhD, MSc

Third Advisor

Jody Koenig Kellas, PhD

Fourth Advisor

Ron Shope, PhD and Lani Zimmerman, PhD, RN

MeSH Headings

palliative care, hospice, pediatric, telehealth, rural, patient reported outcomes

Abstract

A national shortage in pediatric-trained providers results in certain geographies, primarily rural, where children with special needs are not able to access home-based care at their end-of-life. Advances in technology have made the use of telemedicine a potential modality for palliative care subspecialty clinicians to provide clinical care and support for adult-trained hospice teams. This dissertation utilizes four approaches to consider telehealth as an unexplored opportunity in care delivery: (1) a systematic review of telehealth measures and instruments to select the Technology Acceptance Model as a validated metric of telehealth acceptance uniquely now applied to pediatric care; (b) a pilot study to assess telehealth acceptance from the perspective of dying children, family caregivers, and rural hospice nurses using the Technology Acceptance Model; (c) a qualitative exploration of rural hospice nurse perspectives on the quality of telehealth in end-of-life care for children due to the relatively lower acceptance ratings of telehealth by hospice nurses as compared to children and family caregivers; (d) a longitudinal assessment of the impact of a telehealth on pediatric physical and emotional symptoms, family impact, and location of end of life for children with cancer receiving end-of-life care in rural home settings. Care inclusion of pediatric palliative medicine specialist teams using telehealth modalities has potential to foster support for rural hospice teams, family caregivers, and children reaching end of life in a rural home setting.

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Available for download on Saturday, July 22, 2023

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