Ethics and patient and public involvement with children and young people
Humans; Adolescent; Child; Female; Male; Middle Aged; Adult; Guidelines as Topic; Patient Participation/px [Psychology]; United Kingdom; Research Personnel/px [Psychology]; Health Services Research/es [Ethics]; Health Services Research/st [Standards]; Patient Participation/sn [Statistics & Numerical Data]; Research Design/st [Standards]; Research Personnel/es [Ethics]; Research Personnel/st [Standards]
Patient and public involvement (PPI) is important both in research and in quality improvement activities related to healthcare services . While PPI activities do not require formal ethical approval, they can raise a number of ethical concerns, through the introduction of complex technical medical concepts, challenging language or sensitive subject areas. There is very little published literature to guide ethical practice in this area. We have been conducting PPI with children and young people throughout a research study in paediatric palliative care. PPI started during the application process and continued to guide and shape the research as it progressed. Ethical issues can arise at any time in PPI work. Although many can be predicted and planned for, the nature of PPI means that researchers can be presented with ideas and concepts they had not previously considered, requiring reflexivity and a reactive approach. This paper describes how we considered and addressed the potential ethical issues of PPI within our research. The approach that emerged provides a framework that can be adapted to a range of contexts and will be of immediate relevance to researchers and clinicians who are conducting PPI to inform their work. Copyright © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2019. All rights reserved. No commercial use is permitted unless otherwise expressly granted.
Mitchell S J; Slowther A; Coad J; Akhtar S; Hyde E; Khan D; Dale J
Archives of Disease in Childhood - Education and Practice
2019
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-2017-313480" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-313480</a>
Achieving beneficial outcomes for children with life-limiting and life-threatening conditions receiving palliative care and their families: A realist review
child; healthcare facilities; manpower and services; palliative care; realist review; terminal care
Background:Palliative care for children and young people is a growing global health concern with significant resource implications. Improved understanding of how palliative care provides benefits is necessary as the number of children with life-limiting and life-threatening conditions rises.Aim:The aim is to investigate beneficial outcomes in palliative care from the perspective of children and families and the contexts and hidden mechanisms through which these outcomes can be achieved.Design:This is a systematic realist review following the RAMESES standards. A protocol has been published in PROSPERO (registration no: CRD42018090646).Data sources:An iterative literature search was conducted over 2?years (2015?2017). Empirical research and systematic reviews about the experiences of children and families in relation to palliative care were included.Results:Sixty papers were included. Narrative synthesis and realist analysis led to the proposal of context?mechanism?outcome configurations in four conceptual areas: (1) family adaptation, (2) the child?s situation, (3) relationships with healthcare professionals and (4) access to palliative care services. The presence of two interdependent contexts, the ?expert? child and family and established relationships with healthcare professionals, triggers mechanisms, including advocacy and affirmation in decision-making, which lead to important outcomes including an ability to place the emphasis of care on lessening suffering. Important child and family outcomes underpin the delivery of palliative care.Conclusion:Palliative care is a complex, multifactorial intervention. This review provides in-depth understanding into important contexts in which child and family outcomes can be achieved so that they benefit from palliative care and should inform future service development and practice.
Mitchell S; Bennett K; Morris A; Slowther A; Coad J; Dale J
Palliative Medicine
2019
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/10.1177/0269216319870647" target="_blank" rel="noreferrer noopener">10.1177/0269216319870647</a>
Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: A qualitative interview study
death; article; child; female; human; male; palliative therapy; genetic transcription; thematic analysis; pediatrics; clinical article; palliative care; pediatric intensive care unit; advance care planning; decision making; interview; human tissue; national health service; nonverbal communication; paediatric palliative care
Objectives To provide an in-depth insight into the experience and perceptions of bereaved parents who have experienced end of life care decision-making for children with life-limiting or life-threatening conditions in the paediatric intensive care unit (PICU). Design An in-depth qualitative interview study with a sample of parents of children with life-limiting or life-threatening conditions who had died in PICU within the previous 12 months. A thematic analysis was conducted on the interview transcripts. Setting A PICU in a large National Health Service (NHS) tertiary children's hospital in the West Midlands, UK. Participants 17 parents of 11 children who had died in the PICU. Results Five interconnected themes were identified related to end of life care decision-making:(1) parents have significant knowledge and experiences that influence the decision-making process.(2) Trusted relationships with healthcare professionals are key to supporting parents making end of life decisions.(3) Verbal and non-verbal communication with healthcare professionals impacts on the family experience.(4) Engaging with end of life care decision-making can be emotionally overwhelming, but becomes possible if parents reach a place of acceptance'.(5) Families perceive benefits to receiving end of life care for their child in a PICU. Conclusions and implications The death of a child is an intensely emotional experience for all involved. This study adds to the limited evidence base related to parental experiences of end of life care decision-making and provides findings that have international relevance, particularly related to place of care and introduction of end of life care discussions. The expertise and previous experience of parents is highly relevant and should be acknowledged. End of life care decision-making is a complex and nuanced process; the information needs and preferences of each family are individual and need to be understood by the professionals involved in their care. Copyright © 2019 Author(s).
Mitchell S; Spry J L; Hill E; Coad J; Dale J; Plunkett A
BMJ Open
2019
<a href="http://doi.org/10.1136/bmjopen-2018-028548" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2018-028548</a>