Children with serious life-threatening illnesses (SLTIs), or illnesses that may or may not have potential curative or life-prolonging treatments, but all-too-often result in death, are generally living longer with significant and complex care needs. These children are increasingly being cared for at home, and home-based pediatric palliative and hospice care (HBPPHC) is playing a greater role in helping children with SLTIs and their families spend more time at home by providing interdisciplinary care across health care and social service providers and settings, particularly in the period leading up to and at the very end of life. Many of these children and families, however, are not receiving consistently high-quality HBPPHC. Care teams urgently need a way to assess whether the care they provide is indeed aligned with what children and families value and need the most, and to use these assessments to improve care outcomes and quality of care in the home for each child and family. In our current study, we developed the Home-based Experiences of Palliative and Hospice Care for Children and Caregivers (EXPERIENCE) Measure, which is the first known standardized instrument to assess families? experiences with HBPPHC in the U.S. We therefore propose to evaluate the EXPERIENCE Measure from the perspective of parents whose children are currently receiving HBPPHC, as well as from the perspective of palliative and hospice care providers who will ultimately be implementing this tool in clinical practice. To accomplish this goal, we propose three specific aims: 1) Evaluate evidence for score validity and reliability on the EXPERIENCE Measure from parents of children with serious life-threatening illnesses currently receiving palliative or hospice care at home; 2) Evaluate the feasibility and acceptability of using the EXPERIENCE Measure in real-time in parents of children with serious life-threatening illnesses currently receiving palliative or hospice care at home; and 3) Evaluate the perceived clinical utility of the EXPERIENCE Measure with an interdisciplinary group of pediatric palliative and hospice care stakeholders. The proposed project is the first to examine the real-time use of an instrument developed to specifically evaluate parent-reported HBPPHC experiences in the U.S., and fits within the applicant?s long-term career goals to improve access to quality palliative care for all children with SLTIs and their families, particularly in the home setting. This proposed project will be supported by a strong mentorship team, relevant coursework, and career development and other training opportunities at the Children?s Hospital of Philadelphia and the University of Pennsylvania; together, the research project and training plan will build a foundation for a future independent program of research in HBPPHC. The proposed project and the applicant?s long-term career goals align closely with the NINR?s strategic research plan and funding priorities to advance high- quality, evidence-based palliative care, including for children with serious illnesses and their families living in the community.
Children with serious life-threatening illnesses (SLTIs) are generally living longer with significant and complex care needs in the home setting, yet these children and families may not receive consistently high-quality home- based pediatric palliative and hospice care (HBPPHC). Sub-par HBPPHC has far-reaching implications for child and family quality of life, satisfaction with care, family bereavement outcomes, cost of care, and health care resource utilization. The first step to ensuring high-quality HBPPHC for the estimated 5,000 U.S. children with SLTIs living within the last six months of their lives is to develop a measure of families? experiences with care in the home.
