Reimagining Respite: An Interactive Session Aimed at Improving Pediatric Respite Care Through Idea Exchange

Title

Reimagining Respite: An Interactive Session Aimed at Improving Pediatric Respite Care Through Idea Exchange

Creator

Porter AS; McCarthy S

Publisher

Journal of Pain and Symptom Management

Date

2024

Subject

child; diagnosis; adult; human; palliative therapy; self report; caregiver; health care system; care behavior; conference abstract; caregiver support; clinician; respite care; rejuvenation

Description

Outcomes: 1. Using a case-based approach, participants will self-report the ability to describe challenges faced by families of children with medical complexity in accessing respite care services that meet their needs, distinguish which of those challenges are systemic, and propose and assess potential levers for improving the utility of respite care system. 2. Using intervention modeling, participants will self-report the ability to apply research findings and reflections from the group discussion to design alternative models for respite care. Key Message: Early ethnographic data illuminates creative ways family caregivers of children with medical complexity and serious illness find rest and rejuvenation within the limited existing respite system. Sharing respite care models across geographies contributes to the emerging science of family caregiver support and the project of reimagining respite for patients and their families. Children with medical complexity (CMC) receive more palliative care services than any other group, but support for these children and their family caregivers remains strikingly inadequate. Demands on CMC family caregivers are complex and unrelenting. Intended to offer relief from the constancy of caregiving, respite care is rarely available and often not used, suggesting that it falls short of meeting family caregivers' needs for rest and rejuvenation. Few studies have explored CMC family caregiver experiences of respite care, and no research has focused on their need for and experiences of rest and rejuvenation. Early ethnographic data suggests that CMC family caregivers seek rejuvenation over "sleep" or "rest" which is often recommended by clinicians, friends, and family members. They report that the existing respite care system does not meet their needs and express hope for alternative models of respite to support rejuvenation. This interactive educational session will be co-facilitated by a palliative care physician-anthropologist and a palliative care psychology clinician-scientist who is also a bereaved parent. We will share early ethnographic findings to stimulate the exchange of ideas among participants for how to reimagine respite care across geographies and healthcare systems. Specifically, we will ask participants to share their knowledge about existing respite care systems, current efforts to improve respite care, and their patients' and research participants' input on how respite care could be disrupted to better meet CMC family caregivers' needs. In doing so, we aim to contribute to our ongoing exploration of families' respite needs, the existing respire care system, and the emerging science of family caregiver support. Keywords: Models of Palliative Care Delivery / Resilience / Well beingCopyright © 2024

Rights

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).

Citation List Month

June List 2024

Collection

Citation

Porter AS; McCarthy S, “Reimagining Respite: An Interactive Session Aimed at Improving Pediatric Respite Care Through Idea Exchange,” Pediatric Palliative Care Library, accessed February 17, 2025, https://pedpalascnetlibrary.omeka.net/items/show/19632.