Karen Fratantoni1, Jessica C Raisanen2, Renee D Boss2,3, Jennifer Miller3, Kathryn Detwiler1, Susan M Huff4, Kathryn Neubauer3, Pamela K Donohue5,6. 1. Division of General and Community Pediatrics, Children's National Health System, Washington, District of Columbia. 2. Berman Institute of Bioethics, Baltimore, Maryland. 3. Department of Pediatrics, Johns Hopkins University School of Medicine and. 4. Johns Hopkins Home Health Group, Baltimore, Maryland. 5. Department of Pediatrics, Johns Hopkins University School of Medicine and pdonohu2@jhmi.edu. 6. Department of Population, Family, and Reproductive Health, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland; and.
Abstract
BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) often require pediatric home health care (PHHC) to meet their daily intensive care needs. Pediatricians are central to planning, implementing, and maintaining quality PHHC for CMC, yet a comprehensive road map for this process is lacking. With this national study, we aim to fill that gap. METHODS: Semistructured interviews were conducted with parents and professionals from the 10 US Health Resources and Services Administration regions. Parents were recruited via advocacy groups for families of CMC; professionals with experience with PHHC for CMC were identified by using purposive and snowball sampling. Interview transcripts were qualitatively analyzed for themes. RESULTS: A comprehensive process of prescribing, providing, and maintaining PHHC requires 5 steps: identifying needs, investigating options, developing plans of care, initiating services, and navigating evolving needs. The success of the PHHC process is built on knowledge, anticipation, and early identification of needs; communication; care-coordination infrastructure; skilled home health providers; and the parent-provider relationship. CONCLUSIONS: Many CMC require PHHC to live safely outside of the hospital. Although the PHHC process involves multiple steps and participants, pediatricians' understanding of the process is the foundation of PHHC success. Fostering interagency relationships, increasing longitudinal care coordination, and investing in the PHHC infrastructure may reduce the burden placed on families and CMC as they navigate the complex process of PHHC.
BACKGROUND AND OBJECTIVES:Children with medical complexity (CMC) often require pediatric home health care (PHHC) to meet their daily intensive care needs. Pediatricians are central to planning, implementing, and maintaining quality PHHC for CMC, yet a comprehensive road map for this process is lacking. With this national study, we aim to fill that gap. METHODS: Semistructured interviews were conducted with parents and professionals from the 10 US Health Resources and Services Administration regions. Parents were recruited via advocacy groups for families of CMC; professionals with experience with PHHC for CMC were identified by using purposive and snowball sampling. Interview transcripts were qualitatively analyzed for themes. RESULTS: A comprehensive process of prescribing, providing, and maintaining PHHC requires 5 steps: identifying needs, investigating options, developing plans of care, initiating services, and navigating evolving needs. The success of the PHHC process is built on knowledge, anticipation, and early identification of needs; communication; care-coordination infrastructure; skilled home health providers; and the parent-provider relationship. CONCLUSIONS: Many CMC require PHHC to live safely outside of the hospital. Although the PHHC process involves multiple steps and participants, pediatricians' understanding of the process is the foundation of PHHC success. Fostering interagency relationships, increasing longitudinal care coordination, and investing in the PHHC infrastructure may reduce the burden placed on families and CMC as they navigate the complex process of PHHC.
Authors: Julia Wager; Larissa Alice Kubek; Maria Brenner; Sara Calmanti; Carmel Doyle; Malin Lövgren; Ulrika Kreicbergs; Leontien Kremer; Philippe Le Moine; Guillaume Robert; Meggi Schuiling-Otten; Peter Schröder-Bäck; Eduard Verhagen; Boris Zernikow Journal: BMC Palliat Care Date: 2022-10-17 Impact factor: 3.113