Identifying and measuring the palliative needs of children in foster care - title: identifying and measuring the palliative needs of children in foster care a major challenge in tailoring palliative…

The National Institute of Nursing Research awarded The Johns Hopkins University $172,614 on March 4, 2026, under the Nursing Research program (CFDA 93.361) to conduct an exploratory mixed-methods study identifying and measuring palliative care needs among children in foster care with medical complexity.

The research employs a participatory co-design approach with two partner groups: foster partners (including foster and biological parents and adults formerly in foster care) and health care team partners (nurses, nurse practitioners, physicians, and social workers). Aim 1A involves qualitative identification of lived experiences among foster partners caring for children with palliative needs, followed by quantitative assessment of clarity and relevance of an existing palliative screening tool through narrative interviews and a content validity index for a current parent-reported pediatric palliative care screening tool. Aim 1B qualitatively examines lived experiences of health care partners in this population.

The study addresses a documented gap: among children with medical complexity, 27 percent utilize concurrent hospice and end-of-life care, suggesting many children with more than six months of life expectancy could benefit from palliative care. However, the scope and severity of unmet palliative care needs for medically complex children in foster care remain unclear due to an absence of literature and data limitations.

Period of performance extends from the award date through June 30, 2027. Work is performed in Maryland.

Identifying and measuring the palliative needs of children in foster care - 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.