Project Description
Transforming Respite Care for Children with Medical Complexity and their Families: A Stepwise ApproachÂ
Children with medical complexity (CMC) receive more palliative
care services than any other group, but support for them and their family
caregivers remains strikingly inadequate. Caregiving demands on CMC family
caregivers are complex and unrelenting, leaving caregivers without the respite
they need to care for their children and themselves. 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. This dearth of
knowledge about – and ability to support – CMC family caregiver rest and
rejuvenation compromises care and quality of life for both CMC and their
families.
The goal of this study is to reimagine respite for and with CMC
family caregivers, using experience-near qualitative methods and
experience-based co-design principles to advance the science of caregiver
support. The proposed study will develop a family caregiver support
intervention through two aims: (1) to characterize CMC family caregiver
experiences of, needs for, and recommendations for enhancing rest and
rejuvenation through semi-structured qualitative interviews with (a) CMC family
caregivers and (b) home-based, multidisciplinary pediatric palliative care
(PPC) providers and (2) to develop a novel, family-centered REST Care (Rest and Rejuvenation
Experiences in Support of Transforming Care) conceptual framework and family caregiver support
intervention in partnership with community stakeholders. As an MD/PhD
physician-scientist trained in anthropology, pediatric complex care, and PPC,
with a decade of experience caring for CMC and their families, I am singularly
positioned to conduct the proposed research.
The
expected outcome of this proposal is a stakeholder-driven family support
intervention that will lead to a novel program to enhance rest and rejuvenation
of CMC family caregivers. Following completion of the proposed career
development plan and 2-phase study, I will submit a K award application to
refine and test the intervention. This work will lay the foundation for
transforming pediatric respite care to optimize CMC caregiver rest and rejuvenation
– a missing piece in pediatric palliative care services as currently offered.
The proposed endeavor constitutes a major step toward improving quality of life
for both family caregivers and the children to whom they dedicate their lives.
Bio
Amy Porter, MD, PhD, is a physician-scientist in the Division of Supportive and Palliative Care at Mass General for Children and an Instructor in Pediatrics at Harvard Medical School. She received her MD/PhD in Anthropology from Harvard Medical School and the Harvard Graduate School of Arts and Sciences. Following her residency in Pediatrics at the Cleveland Clinic, she completed a fellowship in Pediatric Complex Care at Rainbow Babies and Children’s Hospital/Case Western Reserve University and then a fellowship in Pediatric Hospice and Palliative Medicine at Boston Children’s Hospital/Dana-Farber Cancer Institute. Joining Mass General for Children as a clinician-researcher, she aims to integrate anthropological theory and methods into mixed-methods pediatric palliative care research to reimagine the respite care system to better meet the needs of children with medical complexity and their family caregivers.
Email: Amy_Porter@DFCI.HARVARD.EDU