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>
Weighing Distress and Benefit: Understanding the Research Participation Experiences of Bereaved Parents of Children With Complex Chronic Conditions
complex chronic conditions; pediatric palliative care; end-of-life care; bereavement; Parental perspectives
CONTEXT: Improving end-of-life care for children with complex chronic conditions (CCCs) requires parental perspectives. The vulnerability of bereaved parents has historically been a research barrier and studies describing their research participation experience are lacking. OBJECTIVES: To examine the research participation experience of bereaved parents of children with CCCs and to identify factors associated with distress or benefit. METHODS: In this cross-sectional study, parents of deceased children who received care at Boston Children's Hospital between 2006 and 2015 completed survey questions describing their research participation experience after completing the Survey About Caring for Children with CCCs. Multivariable logistic regression was used to identify factors associated with perceived distress or benefit with participation. Free responses were analyzed using qualitative techniques. RESULTS: One hundred fourteen (54%) of 211 eligible parents completed the survey a median of 3.9 years (interquartile range, 2.1-6.5) after their child's death. Most parents felt comfortable (78%) and reported benefit (88%) from survey participation. Only 6% of parents reported "a great deal" of distress with participation, and of those, 67% still found it beneficial. Being at least moderately spiritual was associated with benefit (adjusted odds ratio 7.12 [95% CI: 1.58-32.1]), while parental decisional regret was associated with distress (adjusted odds ratio 3.41 [95% CI: 1.33-8.72]). Benefit was the most common domain identified, with parents expressing appreciation for the opportunity to help others and share their story. CONCLUSION: A majority of parents responded to questions about their child's end-of-life care without significant distress. When present, distress was often accompanied by a perception that participation was beneficial.
Deming RS; Wolfe J; DeCourcey DD
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.2020.11.018" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.11.018</a>
Weighing Distress and Benefit: Understanding the Research Participation Experiences of Bereaved Parents of Children With Complex Chronic Conditions
bereavement; complex chronic conditions; end-of-life care; Parental perspectives; pediatric palliative care
CONTEXT: Improving end-of-life care for children with complex chronic conditions (CCCs) requires parental perspectives. The vulnerability of bereaved parents has historically been a research barrier and studies describing their research participation experience are lacking. OBJECTIVES: To examine the research participation experience of bereaved parents of children with CCCs and to identify factors associated with distress or benefit. METHODS: In this cross-sectional study, parents of deceased children who received care at Boston Children's Hospital between 2006 and 2015 completed survey questions describing their research participation experience after completing the Survey About Caring for Children with CCCs. Multivariable logistic regression was used to identify factors associated with perceived distress or benefit with participation. Free responses were analyzed using qualitative techniques. RESULTS: One hundred fourteen (54%) of 211 eligible parents completed the survey a median of 3.9 years (interquartile range, 2.1-6.5) after their child's death. Most parents felt comfortable (78%) and reported benefit (88%) from survey participation. Only 6% of parents reported "a great deal" of distress with participation, and of those, 67% still found it beneficial. Being at least moderately spiritual was associated with benefit (adjusted odds ratio 7.12 [95% CI: 1.58-32.1]), while parental decisional regret was associated with distress (adjusted odds ratio 3.41 [95% CI: 1.33-8.72]). Benefit was the most common domain identified, with parents expressing appreciation for the opportunity to help others and share their story. CONCLUSION: A majority of parents responded to questions about their child's end-of-life care without significant distress. When present, distress was often accompanied by a perception that participation was beneficial.
Deming RS; Wolfe J; DeCourcey DD
J Pain Symptom Manage
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.2020.11.018" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.11.018</a>