Disparities in intensity of treatment at end-of-life among children according to the underlying cause of death
children; palliative care; end-of-life; place of death; treatment intensity
Aim: To compare indicators of high-intensity treatment at end-of-life (HI-EOL) among children according to causes of death. Method(s): We conducted a nationwide registry study in Denmark among 938 children of 1-17 years of age who died from natural causes from 2006 to 2016. We identified and compared indicators of HI-EOL within the last month of life across diagnoses. Indicators were hospital admissions, days in hospital, intensive care unit admission, mechanical ventilation, and hospital death. Result(s): Proportions of each indicator of HI-EOL ranged from 27% to 75%. The most common indicators were hospital death (75%) and ICU admission (39%). Compared to children with solid tumours, children with non-cancerous conditions had an adjusted odds ratio of 3.5 (95% CI 2.1-5.9) of having >=3 indicators of HI-EOL within the last month of life and children with haematological cancer had an odds ratio of 11.8 (95% CI 6.1-23.0). Conclusion(s): The underlying diagnosis was strongly associated with HI-EOL. Children who died from solid tumours experienced substantially less intensive treatment than both children with haematological cancer and non-cancerous conditions did. Across non-cancerous diagnoses, the intensity of treatment appeared consistent, which may indicate, that the awareness of palliative care is higher among oncologists than within other paediatric fields. Copyright ©2020 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd
Wolff S; Christiansen CF; Johnsen SP; Schroeder S; Darlington AS; Neergaard MA
Acta Paediatrica
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/10.1111/apa.15713" target="_blank" rel="noreferrer noopener">10.1111/apa.15713</a>
Parents' perspectives on conflict in paediatric healthcare: A scoping review
conflict; paediatric; palliative care; parent perspectives; psychology
Background: Conflict in paediatric healthcare is becoming increasingly prevalent, in particular relation to paediatric end of life. This is damaging to patients, families, professionals and healthcare resources. Current research has begun to explore perspectives of healthcare professionals (HCPs), but the parental views on conflict are lacking. Objective(s): This scoping review explores parental views on conflict during a child's end of life. In addition, parental views are mapped onto HCPs' views. Method(s): A search was completed of the databases CINAHL, PubMed, Web of Science, Embase and Medline between 1997 and 2019, focused on parents of children with involvement with palliative or end-of-life care referring to conflict or disagreements. Result(s): The review found 10 papers that included parental views on conflict. Data on conflict were categorised into the following seven themes: communication breakdown, trust, suffering, different understanding of a best interest', disagreements over treatment, spirituality and types of decision-making. In particular, parental expertise, perspectives on suffering and ways of making decisions were significant themes. A subset of themes mirror those of HCPs. However, parents identified views of conflict unique to their perspective. Conclusion(s): Parents identified important themes, in particular their perspective of what constitutes suffering and best interest'. In addition, parents highlight the importance of being recognised as an expert. Copyright © Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.
Parsons E; Darlington AS
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-2020-320975" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2020-320975</a>
The social and physical environmental factors associated with the play of children living with life threatening/limiting conditions: A Q methodology study
Environment; Palliative care; play; Q methodology; vulnerable children
BACKGROUND: Living with a life threatening/limiting condition changes and challenges children's play. The environment is known to support participation in play, yet there is a lack of evidence highlighting its specific factors contributing to children's play. In this study, we investigated the perspectives of children living with life threatening/limiting conditions with regards to the environmental factors that are related to their engagement in play whilst receiving inpatient healthcare. METHOD(S): Twenty-seven children took part in this study. Participants were aged between 5y and 11y, diagnosed with life threatening/limiting conditions and were receiving care at either a children's hospital or hospice in either Kuwait or the UK. Children were asked to rank-order a Q set according to their perceived importance. The used Q set comprised of social and physical environmental factors. The data were analysed using factor analysis and content analysis. FINDINGS: Two shared viewpoints were identified which represented children from both countries. For factor1, the children's need for social connectivity guided their answers regarding the environmental factors. For factor2, although children considered being surrounded by others important, their selections of the play conditions directed their play. For both factors, children had relatively little concern for outdoor and the type of play to engage in, with the exception of arts and crafts play activities which were deemed important. CONCLUSION(S): Play settings are important to support rich, social play experiences and opportunities that match children's play preferences. Children living with life threatening/limiting conditions in Kuwait and the UK have relatively similar play needs. Copyright This article is protected by copyright. All rights reserved.
Jasem ZA; Lambrick D; Randall DC; Darlington AS
Child: care, health and development.
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/10.1111/cch.12933" target="_blank" rel="noreferrer noopener">10.1111/cch.12933</a>
Caregivers' perspectives on the social and physical environmental factors associated with the play of their children with palliative care needs: A Q methodology study
Caregivers; Children; Environmental factors; Palliative care; Play; Social factors
Children living with palliative care needs are less engaged in play, despite its importance in their lives. The environment may have a crucial role in supporting these children's play. Understanding the importance and impact of environmental factors on children's play is essential to being able to support their participation in play. Data were collected from caregivers (mostly parents) of children living with life-threatening/limiting conditions, who were between 5 and 11 years old. Thirty-nine participants were recruited from two children hospitals and two hospices in Kuwait and in the United Kingdom. The participants' perspectives were explored using Q methodology. By-person factor analysis was used to explore the ranking of each statement. Content analysis was used to analyse the participants' verbal comments. The most important environmental factors were the need for others to share play and get assistance to facilitate play. However, this is not always possible as these conditions, the life-threatening/limiting conditions, may be socially isolating. Children also experience limitations in accessing play resources that match their abilities and meet their play needs. Being aware and responsive to children's play needs is essential for building appropriately supportive play environments for children living with life-threatening/life-limiting conditions. Copyright © The Author(s) 2022.
Jasem ZA; Randall DC; Darlington AS; Lambrick D
Journal of Child Health Care
2022
<a href="http://doi.org/10.1177/13674935211044875" target="_blank" rel="noreferrer noopener">10.1177/13674935211044875</a>
Palliative and end of life care for a child: understanding parents' coping strategies
child; coping; end of life; parent
AIM: Understanding of coping strategies that parents use before the death of their child is crucial, and will enable us to best provide support. The current study aimed to explore parents' coping strategies, and map these onto an existing theoretical framework. METHODS: Bereaved parents and parents of a child with a life-limiting/threatening condition were interviewed to investigate coping strategies, recruited through Intensive Care Units (2 Neonatal, 2 Paediatric, 1 Paediatric Cardiac), and a children's hospice. Analysis focused on coping strategies, and mapping these onto the framework. RESULTS: 24 parents of 20 children were interviewed, and identified Parents use a variety of coping strategies (n=25) such as humour, staying positive, advocating and staying strong for others, expressing emotions and preparing, while also living life to the full, supported by others. The themes were successfully mapped onto the theoretical framework, which focuses on the constructs of approach and avoidance, as well as coping for self and others. CONCLUSION: The findings have provided a detailed account of the breadth and depth of coping strategies parents use, including those classed as avoidance. The strategies were successfully mapped onto the theoretical framework. Future research should investigate changes over times, and associations to negative long-term outcomes.
Darlington AS; Randall D; Leppard L; Koh M
Acta Paediatrica
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/10.1111/apa.15429" target="_blank" rel="noreferrer noopener">10.1111/apa.15429</a>
Eat, Sleep, Internet and Talk': An Exploratory Study of Play Profile for Children Living with Palliative Care Needs
palliative; care; play; vulnerable; children
BACKGROUND: Play is central to children's lives. Children living with palliative care needs experience disruption in their play. In this study, we sought to discover the characteristics and patterns of children's play when receiving care in children's hospital wards and hospices in Kuwait and the United Kingdom. METHODS: A qualitative nonparticipatory observation design was used. Thirty-one children were observed, between the ages of 5 and 11 years, all diagnosed with life-limiting or life-threatening conditions and receiving palliative care. The data were analysed using content analysis. RESULTS: The children's illnesses were negatively impacting their ability to have typical play for their age and development. The children's interactive play was with grown-ups and very rarely with other children. This was associated with isolation precautions, the child's need for assistance and a lack of play resources that match children's physical and cognitive abilities. This gave rise to their engagement in more sedentary, solitary play. The findings of the study did not indicate significant cultural differences between the two countries. CONCLUSION: Children living with palliative care needs may be socially isolated due to their illnesses and their play participation can be limited. Understanding the influencing factors that determine these children's play is essential for implementing effective modifications to enhance their play routines.
Jasem ZA; Darlington AS; Lambrick D; Randall DC
Palliative Care Social Practice
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/10.1177/26323524221105100">10.1177/26323524221105100</a>
Thinking globally to improve care locally: A Delphi study protocol to achieve international clinical consensus on best-practice end-of-life communication with adolescents and young adults with cancer
For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been established, however, many health-professionals do not feel confident leading these conversations, leaving gaps in the implementation of best-practice end-of-life communication. We present a protocol for a Delphi study informing the development and implementation of clinician training to strengthen health-professionals' capacity in end-of-life conversations. Our approach will inform training to address barriers to end-of-life communication with adolescents and young adults across Westernized Adolescent and Young Adult Cancer Global Accord countries. The Adolescent and Young Adult Cancer Global Accord team involves 26 investigators from Australia, New Zealand, the United States, Canada and the United Kingdom. Twenty-four consumers, including adolescents and young adults with cancer history and carers, informed study design. We describe methodology for a modified Delphi questionnaire. The questionnaire aims to determine optimal timing for end-of-life communication with adolescents and young adults, practice-related content needed in clinician training for end-of-life communication with adolescents and young adults, and desireability of evidence-based training models. Round 1 involves an expert panel of investigators identifying appropriate questionnaire items. Rounds 2 and 3 involve questionnaires of international multidisciplinary health-professionals, followed by further input by adolescents and young adults. A second stage of research will design health-professional training to support best-practice end-of-life communication. The outcomes of this iterative and participatory research will directly inform the implementation of best-practice end-of-life communication across Adolescent and Young Adult Cancer Global Accord countries. Barriers and training preferences identified will directly contribute to developing clinician-training resources. Our results will provide a framework to support further investigating end-of-life communication with adolescents and young adults across diverse countries. Our experiences also highlight effective methodology in undertaking highly collaborative global research.
Sansom-Daly UM; Wiener L; Darlington AS; Poort H; Rosenberg AR; Weaver MS; Schulte F; Anazodo A; Phillips C; Sue L; Herbert AR; Mack JW; Lindsay T; Evans H; Wakefield CE; Global Adolescent and Young Adult Cancer Accord End-of-Life Study Group
PLOS ONE
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/10.1371/journal.pone.0270797" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0270797</a>