Children at the Intersection of Pediatric Palliative Care and Child Maltreatment: A Vulnerable and Understudied Population
children; life-threatening condition; pediatric palliative care; child abuse; Maltreatment
CONTEXT: Concerns for child maltreatment can complicate the provision of pediatric palliative care (PPC). Little is known about the vulnerable population of children with life-threatening conditions involved with PPC and state Child Protective Services (CPS) or hospital Child Protection Teams (CPT). More information is needed to inform and optimize collaborative care. OBJECTIVES: Define and describe the population of children with PPC involvement for whom there was concern for maltreatment. METHODS: Single-center, retrospective chart review of children with PPC involvement for whom there was concern for maltreatment, defined as involvement of CPS/CPT between 2005 and 2017. Medical and demographic variables were abstracted and analyzed. Analyses include descriptive tabulation and measurements of association between PPC and CPS/CPT variables. RESULTS: Among 1,804 children followed by PPC, 189 (10.4%) had documented CPS/CPT involvement. Among those, 113 (60%) had CPT involvement, 88 (47%) had concerns of medical neglect, and 100 (53%) had simultaneous CPS/CPT and PPC involvement. Goals of PPC consultation varied by clinical characteristics and concerns for medical neglect. Frequency of CPT involvement and physical abuse concerns also varied by child clinical characteristics. CONCLUSION: PPC practitioners regularly encounter children with CPS/CPT involvement. PPC practitioners should be are aware of the risk of maltreatment in their patients. Although rare in the general pediatric population, medical neglect is a relatively frequent maltreatment concern in children cared for by PPC. PPC practitioners have an opportunity to aid in proper evaluation of medical neglect in children they care for. Closer PPC collaboration with CPS/CPT may further optimize care.
Cleveland RW; Ullrich C; Slingsby B; Keefer P
Journal of Pain and Symptom Management
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2020.11.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.11.007</a>
Factors Affecting Recruitment and Participation of Bereaved Parents in Research: A Brief Report
bereaved parent survey; complex chronic conditions; parental bereavement; pediatric end-of-life research; research diversity
CONTEXT: Inclusion of bereaved parents in survey-based research is essential to improving end-of-life care for children and their families. However, racial and ethnic minorities are vastly underrepresented in these studies. OBJECTIVES: Examine which child demographic characteristics are associated with parental participation in survey-based research. METHODS: Post-hoc secondary analysis of the Survey of Caring for Children with Complex Chronic Conditions. Demographic data were extracted from children's medical records for all eligible parents. Using logistic regression, associations were calculated between child demographics and level of parental study participation (enrolled and completed survey (full participation), enrolled but did not complete survey (incomplete participation), and declined participation). RESULTS: 209 children's parents were eligible for analysis, 114 (55%) fully participated, 36 (17%) incompletely participated, and 59 (28%) declined participation. Compared to those who fully participated, parents of non-white children were more likely to incompletely participate (OR 3.01, 95%CI 1.2-7.4), while those with public insurance only were more likely to decline participation (OR 2.1, 95%CI 1.08-4.03). Parents of children who had a documented limitation to resuscitation order were more likely to fully participate in the study (reference group) than incompletely participate (OR 0.42, 95%CI 0.2-0.91), while parents of children who had subspecialty palliative care involvement were less likely to decline participation in the study (OR 0.5, 95%CI 0.26-0.97). CONCLUSIONS: To ensure optimal end-of-life care for children, all parental voices should be heard. Recruitment of racial/ethnic minorities in bereaved parent survey-based studies can be improved by focusing on specific factors that are associated with parental survey completion.
Cleveland RW; Snaman J; DeCourcey DD
Journal of Pain and Symptom Management
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2021.03.026" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.03.026</a>
Health Care Providers' Perspectives on COVID-19 and Medical Neglect in Children with Life-Threatening Complex Chronic Conditions
children with life-threatening conditions; complex chronic conditions; Covid-19; medical neglect; perspectives of health care professionals
PURPOSE: Little is known regarding medical neglect in children with Life-Threatening Complex Chronic Conditions (LT-CCCs). We examined the impact of COVID-19 on concern for medical neglect in this population. METHODS: Qualitative interview study of multi-disciplinary health care providers (HCPs) from critical care, palliative care, and complex care services on the topic of medical neglect in children with LT-CCCs. We used inductive thematic analysis to generate themes. Findings presented herein are derived from a sub-analysis of the larger study that focused specifically on discussion of COVID-19 by HCPs. RESULTS: 9 of the 20 HCPs interviewed mentioned COVID-19 as influencing situations of potential medical neglect. These 9 represent all disciplines and teams. Interviewees reported COVID-19 increased burden on parents and likelihood of medical neglect due to: 1) Familial distancing from medical and social support and, 2) Changes to medical care delivery that impaired the medical community's ability to engage and support families. CONCLUSIONS: The COVID-19 pandemic has exposed the fragility of the medical and social systems that supports families of children with LT-CCCs. These findings are consistent with previous literature that suggest that the COVID-19 pandemic has increased the risk for child maltreatment. It additionally highlights the vulnerability of this patient population.
Cleveland RW; Deming RS; Helton G; Wilson CR; Ullrich CK
Journal of Child & Adolescent Trauma
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s40653-021-00428-z" target="_blank" rel="noreferrer noopener">10.1007/s40653-021-00428-z</a>