Identifying and Measuring the Palliative Needs of Children in Foster Care

Johns Hopkins University, Baltimore MD

Investigators

Abstract

TITLE: Identifying and Measuring the Palliative Needs of Children in Foster Care A major challenge in tailoring palliative care for children in foster care is a lack of appropriate measures and data identifying their needs. Among children with medical complexity, 27% utilize concurrent (hospice and end of life) care. This high percentage suggests that many CMC with more than 6 months of life expectancy could benefit from palliative care. The known health challenges among children in foster care and CMC suggests a strong likelihood of unmet palliative care needs for CMC in foster care, however, the scope and severity are unclear due to an absence of literature and limitations of data. Participatory action research methodologies with critically ill patients have led to positive outcomes between patient need and medical intervention. Research suggests collaborative co-design could help provide the context, insight and understanding to address unmet palliative needs for children in foster care. Therefore, this exploratory mixed methods study using a participatory co-design approach will determine what palliative care needs should be measured among CMC in foster care from the perspective of two partner groups: 1) Foster partners, including foster and biological parents, and adults formerly in foster care, and 2) health care team partners (including nurses, nurse practitioners, physicians, and social workers). Aim 1a: Qualitatively identify the lived experiences of foster partners caring for children in foster care with palliative needs, and quantitatively assess the clarity and relevance of an existing palliative screening tool in this population. Narrative interviews will be followed by a quantitative content validity index for a current parent-reported pediatric palliative care screening tool. Aim 1b: Qualitatively understand the lived experiences of health care partners caring for children in foster care with palliative needs, and quantitatively assess the clarity and relevance of an existing palliative screening tool for this population. Focus groups will be followed by a quantitative content validity index for a current health care team-reported pediatric palliative care screening tool. Aim 1c: Integrate qualitative and quantitative data into preliminary synthesized findings. Aim 2a: Conduct reflexive discussion and validation of the preliminary Aim 1c findings using a participatory co-design approach with representatives from the foster and health care team partner groups and Aim 2b: Collaboratively co-design screening priorities for palliative needs among foster children. This work will inform future research and clinical practice by anchoring inquiry within human-centered design research approaches to address palliative care needs in foster care.