The National Palliative Care Research Center

Curing suffering through palliative care research.


Amy Porter MD, PhD


Massachusetts General Hospital

Grant Year
Grant Term
2 years
Grant Type
Kornfeld Scholars Program

Project Description
Transforming Respite Care for Children with Medical Complexity and their Families: A Stepwise Approach 

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.

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