Independent hospices for children and young people; Hospices North East
children collaborative hospices England hospice
In 2012 more than 2000 children and young people (CYP) aged 1–19 died in England and Wales. For CYP, cancer, nervous system, respiratory, cardiovascular and congenital conditions account for about 60% of deaths. The nine independent hospices across North East England have formed a collaborative (Hospices North East, HNE) working together to enable collective description of the type and volume of services provided, and the patients and their families served. We describe the services provided for CYP.
Brown A; Newton J; Nicholson C; Fearing A; Gordon S; Wood P; Egdell A; McKean MC; Ellam J
Archives of Disease in Childhood
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/10.1136/archdischild-2019-317861" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2019-317861</a>
Parents' perspectives regarding a physician-parent conference after their child's death in the pediatric intensive care unit
Female; Humans; infant; Male; Intensive Care Units; Adult; Parent-Child Relations; Questionnaires; Middle Aged; Communication; Death; Physician's Role; Needs Assessment; Critical Care; Pediatric; bereavement; infant; Newborn; ICU Decision Making; Parents/psychology
OBJECTIVE: To investigate parents' perspectives on the desirability, content, and conditions of a physician-parent conference after their child's death in the pediatric intensive care unit (PICU). STUDY DESIGN: Audio-recorded telephone interviews were conducted with 56 parents of 48 children. All children died in the PICU of one of six children's hospitals in the National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network (CPCCRN) 3 to 12 months before the study. RESULTS: Only seven (13%) parents had a scheduled meeting with any physician to discuss their child's death; 33 (59%) wanted to meet with their child's intensive care physician. Of these, 27 (82%) were willing to return to the hospital to meet. Topics that parents wanted to discuss included the chronology of events leading to PICU admission and death, cause of death, treatment, autopsy, genetic risk, medical documents, withdrawal of life support, ways to help others, bereavement support, and what to tell family. Parents sought reassurance and the opportunity to voice complaints and express gratitude. CONCLUSIONS: Many bereaved parents want to meet with the intensive care physician after their child's death. Parents seek to gain information and emotional support, and to give feedback about their PICU experience.
2007
Meert KL; Eggly S; Pollack M; Anand KJ; Zimmerman J; Carcillo J; Newth CJ; Dean JM; Willson DF; Nicholson C; National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network
The Journal Of Pediatrics
2007
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).
Journal Article
<a href="http://doi.org/10.1016/j.jpeds.2007.01.050" target="_blank" rel="noreferrer">10.1016/j.jpeds.2007.01.050</a>
Ethical and logistical considerations of multicenter parental bereavement research
Multi-site Ethics
BACKGROUND: Multicenter research has the potential to recruit participants with diverse racial, ethnic, and geographic backgrounds and is essential for understanding heterogeneity in bereavement. The National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network (CPCCRN) is a multicenter network charged with conducting research on the pathophysiology and management of critical illness in childhood. Among its research activities, the CPCCRN has undertaken research in parental bereavement because most childhood deaths in the United States occur in hospitals, primarily in critical care units. OBJECTIVE: The purpose of this paper is to discuss ethical and logistical issues found by the CPCCRN to be problematic to multicenter research with bereaved parents and to explore research strategies that may be practicably implemented. RESULTS: Ethical and logistical challenges encountered by the CPCCRN included issues of privacy; confidentiality; voluntariness; minimizing risks; working with multiple institutional review boards; researcher qualifications, training and support; and methods of data collection. Strategies to address these challenges included local recruitment of participants; flexibility in consent methods across sites; participant options for methods of data collection; involvement of local bereavement support services; central training of researchers with systematic monitoring and opportunities for support; and use of a secure Web-based collaborative workspace. CONCLUSIONS: Multicenter parental bereavement research has distinct ethical issues that must be addressed by the logistics of the research plan. Greater attention to the issues identified may facilitate research to reduce adverse mental and physical health outcomes in a diverse population of bereaved individuals.
2008
Meert KL; Eggly S; Dean JM; Pollack M; Zimmerman J; Anand KJ; Newth CJ; Willson DF; Nicholson C
Journal Of Palliative Medicine
2008
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).
Journal Article
<a href="http://doi.org/10.1089/jpm.2007.0120" target="_blank" rel="noreferrer">10.1089/jpm.2007.0120</a>
Parents' perspectives on physician-parent communication near the time of a child's death in the pediatric intensive care unit
Child; Female; Humans; Male; United States; Intensive Care Units; Adult; Interviews as Topic; Hospital Mortality; Prognosis; Middle Aged; Professional-Family Relations; Communication; Death; Physician's Role; Truth Disclosure; Hospitals; Pediatric; Preschool; bereavement; Parents/psychology
OBJECTIVE: Communicating bad news about a child's illness is a difficult task commonly faced by intensive care physicians. Greater understanding of parents' scope of experiences with bad news during their child's hospitalization will help physicians communicate more effectively. Our objective is to describe parents' perceptions of their conversations with physicians regarding their child's terminal illness and death in the pediatric intensive care unit (PICU). DESIGN: A secondary analysis of a qualitative interview study. SETTING: Six children's hospitals in the National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network. PARTICIPANTS: Fifty-six parents of 48 children who died in the PICU 3-12 months before the study. INTERVENTIONS: Parents participated in audio recorded semistructured telephone interviews. Interviews were analyzed using established qualitative methods. MEASUREMENTS AND MAIN RESULTS: Of the 56 parents interviewed, 40 (71%) wanted to provide feedback on the way information about their child's terminal illness and death was communicated by PICU physicians. The most common communication issue identified by parents was the physicians' availability and attentiveness to their informational needs. Other communication issues included honesty and comprehensiveness of information, affect with which information was provided, withholding of information, provision of false hope, complexity of vocabulary, pace of providing information, contradictory information, and physicians' body language. CONCLUSIONS: The way bad news is discussed by physicians is extremely important to most parents. Parents want physicians to be accessible and to provide honest and complete information with a caring affect, using lay language, and at a pace in accordance with their ability to comprehend. Withholding prognostic information from parents often leads to false hopes and feelings of anger, betrayal, and distrust. Future research is needed to investigate whether the way bad news is discussed influences psychological adjustment and family functioning among bereaved parents.
2008
Meert KL; Eggly S; Pollack M; Anand KJ; Zimmerman J; Carcillo J; Newth CJ; Dean JM; Willson DF; Nicholson C; National Institute of Child Health; Human Development Collaborative Pediatric Critical Care Research Network
Pediatric Critical Care Medicine
2008
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).
Journal Article
<a href="http://doi.org/10.1097/01.PCC.0000298644.13882.88" target="_blank" rel="noreferrer">10.1097/01.PCC.0000298644.13882.88</a>