General and subspecialty clinicians often provide primary, or non-subspecialty, palliative care for children with complex chronic conditions, including those with severe neurological impairment (SNI). To meet the needs of these children and their parents, our research explores the unique challenges and opportunities to improve care for this vulnerable population.
- Bogetz JF, Revette A, Partin L, DeCourcey DD. Relationships and Resources Supporting Children With Serious Illness and Their Parents. Hosp Pediatr. 2022;12(9):832-842. doi:10.1542/hpeds.2022-006596.
- Bogetz JF, Revette A, Rosenberg AR, DeCourcey D. "I Could Never Prepare for Something Like the Death of My Own Child": Parental Perspectives on Preparedness at End of Life for Children With Complex Chronic Conditions. J Pain Symptom Manage. 2020. PMID: 32629083.
- Bogetz JF, Root MC, Purser L, Torkildson C. Comparing Health Care Provider-Perceived Barriers to Pediatric Palliative Care Fifteen Years Ago and Today. J Palliat Med. 2019 Feb;22(2):145-151. PubMed PMID: 30388057.
- Bogetz JF, Bogetz AL, Bergman D, Turner T, Blankenburg R, Ballantine A. Challenges and Potential Solutions to Educating Learners About Pediatric Complex Care. Acad Pediatr. 2014 Nov-Dec;14(6):603-9. PubMed PMID: 25132324.
There is considerable uncertainty about clinical outcomes and limited empirical evidence to guide clinicians’ treatment recommendations during periods of critical decision-making with parents of children with severe neurological impairment. And yet, these decisions have a profound impact on stress and quality of life for children and their parents. Our research focuses on how clinicians can better support parents and includes: 1) collating and evaluating what training programs are available for multidisciplinary clinicians on chronic disease through a systemic review; and 2) developing and studying curricula aimed at training pediatricians to care for children with complex chronic conditions.
- Bogetz JF, Trowbridge A, Jonas D, Root MC, Mullin J, Hauer J. The Impact of Caring for Children With Severe Neurological Impairment on Clinicians [published online ahead of print, 2022 May 24]. Clin Pediatr (Phila). 2022;99228221099135. doi:10.1177/00099228221099135.
- Bogetz JF, Rassbach CE, Bereknyei S, Mendoza FS, Sanders LM, Braddock CH 3rd. Training Health Care Professionals for 21st-Century Practice: A Systematic Review of Educational Interventions on Chronic Care. Acad Med. 2015 Nov;90(11):1561-72. PubMed PMID: 26039140.
- Bogetz JF, Gabhart JM, Rassbach CE, Sanders LM, Mendoza FS, Bergman DA, Blankenburg RL. Outcomes of a Randomized Controlled Educational Intervention to Train Pediatric Residents on Caring for Children With Special Health Care Needs. Clin Pediatr (Phila). 2015 Jun;54(7):659-66. PubMed PMID: 25561698.
- Bogetz JF, Bogetz AL, Gabhart JM, Bergman DA, Blankenburg RL, Rassbach CE. Continuing Education Needs of Pediatricians Across Diverse Specialties Caring for Children With Medical Complexity. Clin Pediatr (Phila). 2015 Mar;54(3):222-7. PubMed PMID: 25561699.
- Bogetz JF, Bogetz AL, Rassbach CE, Gabhart JM, Blankenburg RL. Caring for Children With Medical Complexity: Challenges and Educational Opportunities Identified by Pediatric Residents. Acad Pediatr. 2015 Nov-Dec;15(6):621-5. PubMed PMID: 26409304.
Clinical care for children with SNI is fraught with challenges including stigma and biases related to the child’s neurologic illness and concerns about quality of life and suffering. Our studies focus on how to improve the language used, the decision-making process, and the support parents receive among this population. We develop interventions, including the use of photo-narratives to support these communication processes.
- Morris EL, Hauer J, Bogetz JF. Asset-Based Health Care for Children With Severe Neurologic Impairment [published online ahead of print, 2022 Aug 4]. Pediatrics. 2022;e2021055654. doi:10.1542/peds.2021-055654.
- Lewis H, Trowbridge A, Jonas D, Rosenberg AR, Bogetz JF. A Qualitative Study of Clinicians and Parents of Children with Severe Neurological Impairment on Tools to Support Family-Centered Care [published online ahead of print, 2022 May 20]. J Palliat Med. 2022;10.1089/jpm.2021.0579. doi:10.1089/jpm.2021.0579.
- Bogetz JF, Kett J, Wightman A. Preparing for Medical Decision-Making in Response to Concerns About Suffering in Children with Severe Neurologic Impairment. Acta Paediatrica. 2020 Oct 13. doi: 10.1111/apa.15621. Epub ahead of print. PMID: 33048368.
- Bogetz J, Wilfond BS, Wightman A. Moving Beyond Using the Term Poor Prognosis in Children with Severe Neurological Impairment: A Linguistic Shortcut Better Avoided. JAMA Pediatr. 2019;174(1):11. doi:10.1001/jamapediatrics.2019.4503. PMID: 31764955.
The challenges of caring for children with complex chronic medical conditions, including SNI, often lead to clinician moral distress and burnout. It also impacts the way success and high-quality care are defined in pediatric palliative care. We have written numerous perspectives, normative papers and brief reports examining opportunities to rethink clinician measures of success in chronic illness care. These efforts have focused on: 1) delineating strategies to prevent and intervene on clinician moral distress when caring for children with life-limiting illness and their parents; and 2) exploring how to define high-quality care in pediatric palliative care for seriously ill children.
- Boyden JY, Bogetz JF, Johnston EE, et al. Measuring pediatric palliative care quality: Challenges and opportunities [published online ahead of print, 2023 Feb 1]. J Pain Symptom Manage. 2023;S0885-3924(23)00055-6. doi:10.1016/j.jpainsymman.2023.01.021
- Bogetz JF, Johnston EE, Thienprayoon R, et al. Development of Primary Palliative Care End-of-Life Quality Measures: A Modified Delphi Process. Pediatrics. 2022;150(6):e2022058241. doi:10.1542/peds.2022-058241
- Bogetz JF, Friebert S. Defining Success in Pediatric Palliative Care While Tackling the Quadruple Aim. J Palliat Med. 2017 Feb;20(2):116-119. PubMed PMID: 28085547.
- Jonas DF, Bogetz JF. Identifying the Deliberate Prevention and Intervention Strategies of Pediatric Palliative Care Teams Supporting Providers During Times of Staff Distress. J Palliat Med. 2016 Jun;19(6):679-83. PubMed PMID: 27167894.
To understand the role of palliative care for families of children with complex chronic conditions, such as those with SNI, there needs to be a greater understanding of how the foundations of public health, chronic disease and hospital care influence and inform care for these patients. We have published numerous articles with national palliative and complex care pediatric experts outlining these considerations.
- Johnston EE, Bogetz JF, Saynina O, Chamberlain LJ, Bhatia S, Sanders L. Disparities in Inpatient Intensity of End-of-Life Care for Complex Chronic Conditions. Pediatrics. 2019 May;143(5)PubMed PMID: 30971431.
- Leyenaar JK, Bogetz JF. Child Mortality in the United States: Bridging Palliative Care and Public Health Perspectives. Pediatrics. 2018 Oct;142(4). PubMed PMID: 30232218.
- Bogetz JF, Schroeder AR, Bergman DA, Cohen HJ, Sourkes B. Palliative Care is Critical to the Changing Face of Child Mortality and Morbidity in the United States. Clin Pediatr (Phila). 2014 Oct;53(11):1030-1. PubMed PMID: 24817074.
- Bogetz JF, Ullrich CK, Berry JG. Pediatric Hospital Care for Children with Life-Threatening Illness and the Role of Palliative Care. Pediatr Clin North Am. 2014 Aug;61(4):719-33. PubMed PMID: 25084720.