Human Touch via Touchscreen: Rural nurses' experiential perspectives on telehealth use in pediatric hospice care
communication; coronavirus; hospice care; palliative care; pediatric palliative care; Telehealth; telemedicine
CONTEXT: Telemedicine has the potential to extend care reach and access to home-based hospice services for children. Few studies have explored nurse perspectives regarding this communication modality for rural pediatric cohorts. OBJECTIVES: The objective of this qualitative study was to learn from the experiences of rural hospice nurses caring for children at the end of life using telehealth modalities to inform palliative communication. METHODS: Voice-recorded qualitative interviews with rural hospice nurse telehealth users inquiring on nurse experiences with telehealth. Semantic content analysis was used. RESULTS: Fifteen hospice nurses representing nine rural hospice agencies were interviewed. Nurses participated in an average of eight telehealth visits in the three-months prior. Nurses were female with mean age 38 years and average 7 years hospice nursing experience. Five themes about telehealth emerged: accessible support, participant inclusion, timely communication, informed and trusted planning, and familiarity fostered. Each theme had both benefits and cautions associated as well as telehealth suggestions. Nurses recommended individualizing communication, pacing content, fostering human connection, and developing relationships even with technology use. CONCLUSIONS: The experiences of nurses who utilize telehealth in their care for children receiving end of life care in rural regions may enable palliative care teams to understand both the benefits and challenges of telehealth use. Nurse insights on telehealth may help palliative care teams better honor the communication needs of patients and families while striving to improve care access.
Weaver M S; Neumann M L; Navaneethan H; Robinson J E; Hinds P S
Journal of Pain and Symptom Management
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2020.06.003" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.06.003</a>
Telehealth acceptability for children, family, and adult hospice nurses when integrating the pediatric palliative inpatient provider during sequential rural home hospice visits
hospice; pediatric palliative care; rural; telehealth
Background: Children in rural geographies are not universally able to access pediatric-trained palliative or hospice providers. Objective(s): 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(s): Case series. Setting(s): Home hospice in rural Midwest. Participant(s): 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. Result(s): 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." Conclusion(s): Pediatric palliative telehealth visits partnered with in-person hospice nurse offer acceptable access to services, while extending support. © Copyright 2020, Mary Ann Liebert, Inc., publishers 2020.
Weaver M S; Robinson J E; Shostrom V K; Hinds P S
Journal of Palliative Medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2019.0450" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0450</a>
Sowing Across a State: Development and Delivery of a Grassroots Pediatric Palliative Care Nursing Curriculum
education; hospice; palliative care; pediatric; pediatric palliative; rural health
BACKGROUND: Rural pediatricians and adult-trained hospice teams report feeling ill-prepared to care for children at end of life, resulting in geographies in which children are not able to access home-based services. OBJECTIVES: To develop a pediatric palliative care curriculum for inpatient nurses and adult-trained hospice teams caring for children in a rural region. METHODS: Curriculum design and delivery was informed by local culture through an interdisciplinary, iterative development approach with confidence, intention, and support measured pre-, post-, and 4 months after delivery. A needs assessment was completed by pediatric nurses caring for children receiving palliative or end-of-life care to inform curricular content (phase 1). A curriculum was designed by an interdisciplinary pediatric palliative care team and piloted with nursing cohorts annually through educational conferences with monthly discussion series for 3 consecutive years (phase 2). Curricular content was then provided for 31 rural hospice team members (phase 3). RESULTS: Self-reported confidence in caring for children increased by 1.1/10 points for adult-trained hospice team members. Mean score for intention to care for children increased by 5.2 points (sustained 5.1 points above baseline at 4 months). Perception of support in caring for children increased by 5 points (mean sustained 5.4 points above baseline at 4 months). Family needs, care goals, and symptom management were prioritized learning topics. Rural hospices previously unwilling to accept children enrolled pediatric patients in the 4 months following the conference. CONCLUSION: Grassroots curricular initiatives and ongoing educational mentorship can grow pediatric palliative and hospice services in rural regions.
Weaver M S; Jenkins R; Wichman C; Robinson J E; Potthoff M R; Menicucci T; Vail C A
Journal of Palliative Care
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0825859719889700" target="_blank" rel="noreferrer noopener">10.1177/0825859719889700</a>