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
Deaths and end-of-life decisions differed between neonatal and paediatric intensive care units at the same children's hospital
End-of-life Decisions; Ethics; Mortality; Neonatal Intensive Care Unit; Paediatric Intensive Care Unit
AIM: We compared neonatal deaths and end-of-life decisions in a neonatal intensive care unit (NICU) and paediatric intensive care unit (PICU) in a Dutch tertiary children's hospital. SUBJECTS: All 235 full-term infants who died within 28 days of life between 2003 and 2013 in the NICU (n = 199) and PICU (n = 36) were retrospectively studied. RESULTS: The median length of stay was three days in the NICU and seven days in the PICU (p = 0.003). The main reasons for NICU stays were asphyxia (52.8%) and congenital malformations (42.2%), and in the PICU, they were congenital malformations (97.2%) and primarily cardiac problems (83.3%, p < 0.001). The median age of death was three days in the NICU and eight days in the PICU (p < 0.001), and mortality despite full intensive care treatment was 4.0% and 25.0%, respectively. Intensive treatment was discontinued because of poor survival chances in 25.1% of NICU and 52.8% of PICU cases (p < 0.001), and care was redirected because of expected poor quality of life in 70.9% and 22.2%, respectively. CONCLUSION: Differences between the age at death and end-of-life decisions were found between full-term infants in the NICU and PICU in the same children's hospital. Underlying disorders and doctors' attitudes may have played a role.
Snoep MC; Jansen NJG; Groenendaal F
Acta Paediatrica
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="https://doi.org/10.1111/apa.14061" target="_blank" rel="noreferrer">10.1111/apa.14061</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>
Challenges of paediatric palliative care in the intensive care unit during the COVID-19 pandemic
Challenges; Covid-19; Paediatric intensive care unit; Paediatric palliative care
BACKGROUND: The integration of paediatric palliative care into the Iranian health system is essential. AIMS: The aim of this study was to identify the challenges of palliative care in the paediatric intensive care unit during COVID-19 through the experiences of healthcare providers. METHODS: A qualitative study with content analysis approach was conducted. Fifteen physicians and nurses were selected by purposeful sampling. The semi-structured, in-depth interviews were applied in the data collection. FINDINGS: Ten main categories were extracted from data analysis, including 'caring in COVID-19', 'communication and family centre care', 'breaking bad news', palliative care training', 'pain and symptom management', 'support of the child, family and clinical team', 'physical environment', 'guidelines', 'specialised staff' and 'home based palliative care'. CONCLUSION: Palliative care in the PICU faces several challenges, especially during COVID-19, but the clinical team are making every attempt to improve the comprehensive care of children and their families. Telehealth is important in COVID-19, and education is also a key component to improve palliative care in the PICU in Iran.
Hasanpour M; Pouraboli B; Mohammadpour M; Tahmasebi M; Sabeti F
International Journal of Palliative Nursing
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/10.12968/ijpn.2021.27.6.303" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2021.27.6.303</a>
Guidelines regarding ineffective maintenance of organ functions (futile therapy) in paediatric intensive care units
Anesthesiology; Critical care; Futile therapy; Paediatric intensive care unit; Palliative care
In Poland, guidelines for the management of ineffective treatment of children in neonatal and paediatric departments developed by the Polish Neonatal Society and the Polish Paediatric Society, have been published. The specific problems of futile therapy in paediatric anaesthesiology and intensive care units should be defined and solved separately. For this purpose, the guidelines presented below were prepared. They present the principles for managing children for whom therapeutic options available in paedia-tric anaesthesiology and intensive care units have been exhausted and ineffectiveness of maintaining organ functions, i.e. futile therapy, has been suspected. The decision to withdraw futile therapy of a child is undoubtedly one of the most difficult for both doctors and parents, and for this reason, it should be made collectively, respecting the dignity of the child and his/her parents or legal representatives, and continuing the management aimed at relieving the child's pain and suffering, as well as minimising anxiety and fear. Due to the small amount of reliable evidence-based data, the guidelines constitute the consensus of the Group of Experts and are dedicated to minor patients treated in paediatric anaesthesiology and intensive care units.
Bartkowska-Śniatkowska A; Byrska-Maciejasz E; Cettler M; Damps M; Jarosz K; Mierzewska-Schmidt M; Migdał M; Ożóg-Zabolska I; Piotrowski A; Rawicz M; Świder M; Tałałaj M; Zielińska M
Anaesthesiology Intensive Therapy
2021
<a href="http://doi.org/10.5114/ait.2021.111451" target="_blank" rel="noreferrer noopener">10.5114/ait.2021.111451</a>