Revisiting medical neglect concerns in children with life-threatening complex chronic conditions.

BACKGROUND/OBJECTIVES: Life-Threatening Complex Chronic Conditions (LT-CCCs) increase the complexity of medical neglect concerns. Clinicians' perspectives are central in concerns for medical neglect, yet little is currently known regarding clinicians' understanding of and approach to these situations. We explored how clinicians who care for children with LT-CCCs understand medical neglect. METHODS: We conducted a semi-structured qualitative interview study with 20 clinicians of varying disciplines from critical, palliative, and complex care services about medical neglect in children with LT-CCCs. We used inductive thematic analysis to generate themes. RESULTS: Three primary themes emerged: Relationship between family and medical community, family overwhelmed with medical demands, and insufficient support. Taken together these themes suggest that concerns for medical neglect are directly related to clinician perception of family inability to meet medical needs. CONCLUSION: Clinicians report that concerns for medical neglect in children with LT-CCCs often arise from a mismatch of medical expectations and the perception of familial ability to provide said medical care. Given the complex and delicate medical and psychosocial environments of care for children with LT-CCCs, these medical neglect concerns are more accurately described as Medical Insufficiency, a new term. By reframing this entity, we can reframe the dialogue surrounding this issue, and reconsider approaches to studying, preventing, and resolving it.

Health Care Providers' Perspectives on COVID-19 and Medical Neglect in Children with Life-Threatening Complex Chronic Conditions.

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.

Care Intensity and Palliative Care in Chronically Critically Ill Infants.

CONTEXT: Increasingly, chronically critically ill (CCI) infants survive to discharge from Neonatal Intensive Care Units (NICUs). Little is known about their care intensity and the primary and specialty palliative care families receive at and following discharge. OBJECTIVES: To describe care intensity and primary and specialty palliative care received by NICU CCI infants at discharge and one year. METHODS: Chart abstraction of CCI infants at three academic centers discharged at ≥42 weeks corrected gestational age with medical technology between 2016 and 2019, including demographics, care intensity, and primary and specialty palliative care received at discharge and one year. RESULTS: Among 273 infants, NICU median stays were 45 [IQR 23-92] days. Primary diagnoses included congenital and/or genetic conditions (68.5%), prematurity (28.2%), and birth events (3.3%). At discharge, surgical feeding tubes (75.1%) and tracheostomies (24.5%) were the most common technologies. Infants received a median of 6 [IQR 4-9] medications and were followed by a median of 8 [IQR 7-9] providers. At one year, 91.4% continued with one or more technologies, similar numbers of medications and specialty providers. In the NICU, nearly all families had social work involvement, 78.8% had chaplaincy and 53.8% child life; 19.8% received specialty palliative care consultation. At one year, only 13.2% were followed by palliative care. CONCLUSIONS: CCI infants receive intensive medical care including multiple medical technologies, medications, and specialty follow up at discharge and remain complex at one year of life. Most receive primary interprofessional palliative care in the NICU, however these infants and their families may have limited access to specialty palliative care in the short- and long-term.

Weighing Distress and Benefit: Understanding the Research Participation Experiences of Bereaved Parents of Children With Complex Chronic Conditions.

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.