Family-centered care and pediatric death in the emergency department: A qualitative study using framework analysis
Family-centered care; Emergency department; Nursing; Qualitative; Pediatric death
Background Family-centered care is an important concept underpinning care of children. Although much researched in some settings, little research has explored specialist settings, or areas where both children and adults are cared for, such as the emergency department. Methods This study sought to explore how nurses employ family-centered care in delivering care to children and families when a child dies in the emergency department. Using a descriptive, qualitative approach, semi-structured interviews were conducted with 24 emergency nurses from six Australian states. Interviews were audio-recorded and transcribed verbatim. Framework analysis was applied to examine alignment with family-centered care principles. Findings Nurses described providing support and education, and encouraged families to engage in care decisions, including about ceasing resuscitation efforts. Commonly, senior staff members were allocated during emergencies to support parents. Discussion Emergency nurses should be offered education on family-centered care, and research undertaken to explore families' experiences of their child dying in the emergency department. Practice Implication Family-centered care should be a focus for the care of children and their families in the emergency department, regardless of the pressure from rapidly occurring events.
McKenna L; Shimoinaba K; Copnell B
Journal of Pediatric Nursing
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/10.1016/j.pedn.2022.01.013" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2022.01.013</a>
Gradually Disengaging: Parent-Health care Provider Relationships After a Child's Death in the Pediatric Intensive Care Unit
When a child dies in the intensive care unit, many bereaved parents want relationships with their child's health care staff to continue in the form of follow-up care. However, the nature of these relationships and how they change across the parents' bereavement journey is currently unknown. This article explores early and ongoing relationships between parents and health care staff when a child dies in intensive care. Constructivist grounded theory methods were used to recruit 26 bereaved parents from four Australian pediatric intensive care units into the study. Data were collected via audio-recorded, semistructured interviews and analyzed using the constant comparative methods and theoretical memoing. Findings show that these relationships focus on Gradually disengaging, commonly moving through three phases after the child dies: Saying goodbye, Going home, and Seeking supports. These findings provide guidance to health care staff on what families need as they leave the intensive care unit and move through bereavement.
Butler AE; Hall H; Copnell B
Journal of Family Nursing
2018
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/10.1177/1074840718783470" target="_blank" rel="noreferrer noopener">10.1177/1074840718783470</a>
Becoming a Team: The Nature of the Parent-Healthcare Provider Relationship when a Child is Dying in the Pediatric Intensive Care Unit
Child death; Parent; intensive care; Bereavement; Child; Intensive Care; Intensive Care Units; Only Child; Pediatric; Pediatric intensive care unit; Grounded theory; child; Nurse; Relationship
PURPOSE: To explore bereaved parents' perspectives of parent and staff roles in the pediatric intensive care unit when their child was dying, and their relationships with healthcare staff during this time. DESIGN AND METHODS: Constructivist grounded theory was used to undertake this study. Semi-structured interviewers were conducted with 26 bereaved parents recruited from four Australian pediatric intensive care units. The constant comparative method, coupled with open, focused, and theoretical coding were used for data analysis. RESULTS: Becoming a team explores the changes that occurred to the parent-healthcare provider relationship when parents realized their child was dying and attempted to become part of their child's care team. When the focus of care changed from 'life-saving' to 'end-of-life', parents' perspectives and desires of their and the healthcare providers' roles changed. Parents' attempted to reconstruct their roles to match their changing perspectives, which may or may not have been successful, depending on their ability to successfully negotiate these roles with healthcare providers. CONCLUSIONS: Findings offer insights into parental understandings of both the parental and healthcare provider roles for parents of dying children in intensive care, and the ways in which the parent-healthcare provider relationships can influence and be influenced by changes to these roles. PRACTICE IMPLICATIONS: Successful parent-healthcare provider relationships require an understanding of the parental and healthcare provider role from the parents' perspective. The meanings of the parental and healthcare provider roles should be explored with parents of dying children, and supported as much as possible to enable the development of a collaborative relationship.
Butler AE; Hall H; Copnell B
Journal of Pediatric Nursing
2018
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.pedn.2018.02.002" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2018.02.002</a>
Death in the pediatric ICU: caring for children and families at the end of life
PedPal Lit; Attitude of Health Personnel Attitude to Death Attitude to Health Bereavement Child Child; Hospital/psychology Pediatric Nursing/organization & administration Professional-Family Relations Social Support Terminal Care/organization & administration/psychology Total Quality Management; Hospitalized/psychology Critical Care/organization & administration/psychology Decision Making; Organizational Empathy Family/psychology Forecasting Health Services Needs and Demand Humans Nurse's Role/psychology Nurse-Patient Relations Nursing Research Nursing Staff
The need to improve care for children and families at the end of life is acknowledged widely. This article reviews current research concerning end-of-life care in the pediatric ICU. How children die, how decisions are made, management of the dying process, and parent and caregiver experiences are major themes. Gaps in current knowledge are identified, and suggestions are made for future research.
2005
Copnell B
Critical Care Nursing Clinics Of North America
2005
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.ccell.2005.07.007" target="_blank" rel="noreferrer">10.1016/j.ccell.2005.07.007</a>
The impact of the social and physical environments on parent-healthcare provider relationships when a child dies in PICU: Findings from a grounded theory study
Child; Death; Environment; grounded theory; Paediatric intensive care unit; Parent-healthcare provider relationship
OBJECTIVES: This study explores the influences of the paediatric intensive care environment on relationships between parents and healthcare providers when children are dying. It forms part of a larger study, investigating parental experiences of the death of their child in intensive care. RESEARCH METHODOLOGY: Constructivist grounded theory. SETTING: Four Australian paediatric intensive care units. MAIN OUTCOME MEASURES: Audio-recorded, semi-structured interviews were conducted with twenty-six bereaved parents. Data were analysed using the constant comparison and memoing techniques common to grounded theory. FINDINGS: The physical and social environment of the intensive care unit influenced the quality of the parent-healthcare provider relationship. When a welcoming, open environment existed, parents tended to feel respected as equal and included members of their child's care team. In contrast, environments that restricted parental presence or lacked resources for parental self-care could leave parents feeling like 'watchers', excluded from their child's care. CONCLUSIONS: The paediatric intensive care unit environment either welcomes and includes parents of dying children into the care team, or demotes them to the status of 'watcher'. Such environments significantly influence the relationships parents form with healthcare staff, their ability to engage in elements of their parental role, and their experiences as a whole.
Butler AE; Copnell B; Hall H
Intensive And Critical Care Nursing
2017
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.iccn.2017.12.008" target="_blank" rel="noreferrer">10.1016/j.iccn.2017.12.008</a>
"Some were certainly better than others" - Bereaved parents' judgements of healthcare providers in the paediatric intensive care unit: A grounded theory study
Child; Death; grounded theory; Health Personnel; Intensive care unit (paediatric); parent
OBJECTIVE: To explore bereaved parents' judgements of healthcare providers, as part of a larger study examining their perceptions of the death of a child in the paediatric intensive care unit. RESEARCH METHODOLOGY: Constructivist grounded theory. SETTING: Four Australian paediatric intensive care units. MAIN OUTCOME MEASURES: Semi-structured, audio recorded interviews were undertaken with 26 bereaved parents 6-48months after their child's death. Data were transcribed verbatim and analysed using open, focused and theoretical coding and the constant comparative method. FINDINGS: Bereaved parents judged healthcare providers as 'good' or 'poor' based on behaviours they exhibit. 'Good' behaviours were further subdivided by parents into four categories: 'Better than others', 'good', 'very good', and 'fantastic'. Common behaviours identified as 'good' included provision of practical assistance, facilitation of parental presence, and sharing of information. In contrast, the concept of 'poor' had no subdivision: all identified behaviours, including diminishing parental concern, mishandling hope, adopting an unprofessional demeanour, judging the child's worth, and mishandling communication, were equally detrimental. CONCLUSIONS: Findings demonstrate that bereaved parents have clear opinions on what constitutes 'good' and 'poor' behaviours when their child is dying. These judgements provide clear examples for healthcare providers who provide end-of-life care, ensuring they provide high quality care.
Butler AE; Copnell B; Hall H
Intensive And Critical Care Nursing
2017
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.iccn.2017.12.003" target="_blank" rel="noreferrer">10.1016/j.iccn.2017.12.003</a>
The Changing Nature Of Relationships Between Parents And Healthcare Providers When A Child Dies In The Paediatric Intensive Care Unit
Bereaved Parent; End-of-life; Grounded Theory; Healthcare Provider; Interaction; Nurse; Paediatric Intensive Care Unit; Relationship
AIM: To explore bereaved parents' interactions with healthcare providers when a child dies in a paediatric intensive care unit. BACKGROUND: Though most children admitted to a paediatric intensive care unit will survive, 2-5% will die during their stay. The parents of these children interact and form relationships with numerous healthcare staff during their child's illness and death. Though previous studies have explored the parental experience of child death in intensive care generally, the nature of their relationships with healthcare providers during this time remains unknown. DESIGN: This study used a constructivist grounded theory approach. METHODS: Data were collected via semi-structured, audio-recorded interviews with 26 bereaved parents from 4 paediatric intensive care units over 18 months in 2015-2016. Constant comparative analysis and theoretical memos were used to analyse the data. FINDINGS: The theory 'Transitional togetherness' demonstrates the changing nature of the parent-healthcare provider relationship across three key phases of the parents' journey. Phase one, 'Welcoming expertise', focuses on the child's medical needs, with the healthcare provider dominant in the relationship. Phase two, 'Becoming a team', centres around the parents' need to recreate a parental role and work collaboratively with healthcare providers. Finally, 'Gradually disengaging' describes the parents' desire for the relationship to continue after the child's death as a source of support until no longer needed. CONCLUSIONS: Findings from this study offer valuable insights into the changing nature of the parent-healthcare provider relationship and highlight the key foci of the relationship at each stage of the parental journey. This article is protected by copyright. All rights reserved.
Butler A E; Hall H; Copnell B
Journal Of Advanced Nursing
2017
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).
DOI: 10.1111/jan.13401