The NeoPACE study: study protocol for the development of a core outcome set for neonatal palliative care
child; adult; article; controlled study; human; male; newborn; palliative therapy; newborn death; perinatal death; terminal care; total quality management; systematic review; interview; newborn intensive care; health care personnel; therapy; Delphi study
Neonatal death is the leading category of death in children under the age of 5 in the UK. Many babies die following decisions between parents and the neonatal team; when a baby is critically unwell, with the support of healthcare professionals, parents may make the decision to stop active treatment and focus on ensuring their baby has a 'good' death. There is very little evidence to support the clinical application of neonatal palliative care and/or end-of-life care, resulting in variation in clinical provision between neonatal units. Developing core outcomes for neonatal palliative care would enable the development of measures of good practice and enhance our care of families. The aim of this study is to develop a core outcome set with associated tools for measuring neonatal palliative care. Method: This study has four phases: (1) identification of potential outcomes through systematic review and qualitative interviews with key stakeholders, including parents and healthcare professionals (2) an online Delphi process with key stakeholders to determine core outcomes (3) identification of outcome measures to support clinical application of outcome use (4) dissemination of the core outcome set for use across neonatal units in the UK. Key stakeholders include parents, healthcare professionals, and researchers with a background in neonatal palliative care. Discussion: Developing a core outcome set will standardise minimum reported outcomes for future research and quality improvement projects designed to determine the effectiveness of interventions and clinical care during neonatal palliative and/or end-of-life care. The core outcome set will provide healthcare professionals working in neonatal palliative and/or end-of-life support with an increased and consistent evidence base to enhance practice in this area. Trial registration: The study has been registered with the COMET initiative ( https://www.comet-initiative.org/Studies/Details/1470 ) and the systematic review is registered with the International Prospective Register of Systematic Reviews (PROSPERO) (CRD42023451068).
Gallagher K; Chant K; Mancini A; Bluebond-Langner M; Marlow N
BMC Palliative Care
2023
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/10.1186/s12904-023-01326-x" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01326-x</a>
Neonatal organ donation: Retrospective audit into potential donation in a single neonatal unit
Infant, Newborn; England; article; human; newborn; newborn death; terminal care; documentation; human tissue; newborn intensive care; patient referral; neonatal intensive care unit; surgery; infant; conversation; nurse; cause of death; eligibility; transplantation; brain injury; cooling; organ donor
Background: Research has shown that many babies who die in neonatal units could have been potential tissue and/or organ donors. Despite the existence of guidelines supporting its implementation, the incidence of neonatal donation remains rare in the United Kingdom. Aim: The aim of this audit was to retrospectively determine potential eligibility for neonatal tissue and/or organ donation referral in infants who died in a single UK tertiary-level neonatal unit between 2012 and 2021. Cause of death and documentation of any discussions held regarding referral for donation were also explored. Study design: An audit was undertaken to identify all neonatal deaths at a single tertiary-level NICU in London from 2012-2021. Infants who retrospectively could have been referred as potential tissue and/or organ donors were identified using current NHS Blood and Transplant inclusion and exclusion criteria. Results and conclusion: A significant missed potential for neonatal tissue and/or organ donation referrals was identified, which is likely not just limited to the unit audited. Causes of death were as expected for a tertiary level neonatal unit and centre for therapeutic cooling of babies born with hypoxic perinatal brain injuries. Only one documented conversation was found regarding neonatal donation. Relevance to clinical practice: To enable conversations regarding neonatal donation to become a routine part of end-of-life care discussions with families as appropriate, good links between neonatal healthcare professionals and Specialist Nurses in Organ Donation need to be established. This will facilitate the referral of all suitable neonates as potential donors and ensure that neonatal staff feel supported to care for babies identified as potential donors.
Ali F; Chant K; Scales A; Sellwood M; Gallagher K
Nursing in Critical Care
2023
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/nicc.12943" target="_blank" rel="noreferrer noopener">10.1111/nicc.12943</a>
George's Lullaby: A Case Study of the Use of Music Therapy to Support Parents and Their Infant on a Palliative Pathway
Infant; Intensive Care Units Neonatal; Music Therapy; Utilization; United Kingdom; In Infancy and Childhood; Deficiency; Parent-Infant Bonding; Pulmonary Surfactants
Having an infant diagnosed with a life-limiting condition is a stressful time for parents and has been shown to have an impact on parental mental health. Music Therapy, when provided by an HCPC registered Music Therapist with enhanced Neonatal training, can empower parents to share culturally based, personal music with their infant to assist with developmental care and create precious memories. These positive experiences are vital to hold in order to continue bonds after death and assist in processing grief. This case study presents a full term infant with surfactant deficiency (R192). Weekly Music Therapy was provided on the Neonatal Intensive Care Unit (NICU) with parents and infant following the Rhythm Breath Lullaby: First Sounds approach. It was then used again at the end of the infant's life at the family home. Music Therapy provided a focus for the family while on the unit and supported family integrated developmental care of the infant. The relationship developed, a long with the music shared, then supported the family emotionally and physically as parent's held their baby at end of life. To our knowledge this is the first time Music Therapy has been provided on the NICU through to end of life at home with the same Music Therapist. Music Therapy on Neonatal Unit is uncommon in the UK but has potential to support infant comfort whilst supporting the sharing of parent identities. Music Therapy has the potential to provide a focus that enables parents, who have a heightened awareness of the proximity of loss, to interpret, play and comfort their infant.
Ormston K; Rose E; Gallagher K
Journal of Neonatal 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.jnn.2022.01.011" target="_blank" rel="noreferrer noopener">10.1016/j.jnn.2022.01.011</a>
End-of-Life Decision Making Between Doctors and Parents in NICU: The Development and Assessment of a Conversation Analysis Coding Framework
Conversation; Critically ill patient; Decision making; Disability; Doctors; Interrater reliability; Parents
We report the development and assessment of a novel coding framework in the context of research into neonatal end-of-life decision making conversations. Data comprised 27 formal conversations between doctors and parents of critically ill babies, recorded in two neonatal intensive care units. The coding framework was developed from a qualitative analysis of the recordings using the method of conversation analysis (CA). Codes underpinned by our qualitative analysis had in the main moderate to strong agreement (inter-rater reliability) between coders; three codes had lower agreement reflecting the use of euphemisms for death and disability. Coding these interactions confirmed the significance of the doctors' talk in terms of parental involvement in decision-making, whilst highlighting areas warranting further qualitative analysis. This quantifiable representation provides a novel outcome based on evidence that is internal to the conversation rather than influenced by other factors related to the baby's care or outcome.
Shaw C; Connabeer K; Drew P; Gallagher K; Aladangady N; Marlow N
Health Communication
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/10.1080/10410236.2022.2059800" target="_blank" rel="noreferrer noopener">10.1080/10410236.2022.2059800</a>
PO-0282 Power Of Empowerment: Parent Controlled Visitors’ Badges To Monitor Bedspace Visitor Numbers In A Picu
Background and aims Recent audit found common practice in the UK is to restrict visitors on PICU to 2 adults, including parents, to ensure staff’s safe patient access. This requires nurses to take responsibility for bed space visitors, however, this proves difficult in clinical practice for all concerned. This research explored whether empowering parents to take visitor responsibility impacted visitor numbers and therefore patient safety on PICU. Methods The research took place on a 19 bedded tertiary PICU in the UK. Each day parents were issued two visitors badges, allocated at their discretion. Badges display day, bed number and badge number, and must be visible at all times. Twelve months post-implementation, a 3 month audit was undertaken to assess bed space adherence. Questionnaires were conducted to assess staff and parent knowledge and opinion towards the system. Results 178 bed space observations were undertaken and 95 questionnaires completed (visitors=53; staff=42). In 26 observations visitors were without visible badges (15%) and in 2 instances over two visitors were at the bed space (1%). In one exceptional instance, end-of-life care was occurring. Questionnaire results showed 98% of staff and visitors were aware of the system, with 81% reporting it beneficial to the child and family, and 92% beneficial to the unit. Conclusions Both staff and parents report the new system is empowering to parents, granting responsibility for their child’s welfare whilst still allowing staff to monitor effectually. This research has shown that through effective interaction with parents, systems can be implemented and successfully utilised, benefitting patient safety.
2014-10
Norridge M; Gallagher K
Archives Of Disease In Childhood
2014
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/10.1136/archdischild-2014-307384.935" target="_blank" rel="noreferrer">10.1136/archdischild-2014-307384.935</a>
Parental Involvement In Neonatal Critical Care Decision-making.
Sociology; Life; Interrogatives; Consultation; Social Sciences; Biomedical; Decision Making; Shared Decision; Recommendations; Medical Authority; Communication; Conversation; End Of Life Care; Public; Public Environmental & Occupational Health; End; Resistance; Training; Cooperation; Communication; Palliative Care; Decision Making; Intensive Care; Participation; Ethics; Medicine; Physicians; Parents; Conversational Analysis; Decisions; Infant; Palliative Treatment; Parenting; Infants (newborn); Decision Making; Parent And Child; Analysis
Conversation Analysis; Decision-making; End Of Life; Ethics; Neonatal; Parental Involvement
The article analyses the decision-making process between doctors and parents of babies in neonatal intensive care. In particular, it focuses on cases in which the decision concerns the redirection of care from full intensive care to palliative care at the end of life. Thirty one families were recruited from a neonatal intensive care unit in England and their formal interactions with the doctor recorded. The conversations were transcribed and analysed using conversation analysis. Analysis focused on sequences in which decisions about the redirection of care were initiated and progressed. Two distinct communicative approaches to decision-making were used by doctors: 'making recommendations' and 'providing options'. Different trajectories for parental involvement in decision-making were afforded by each design, as well as differences in terms of the alignments, or conflicts, between doctors and parents. 'Making recommendations' led to misalignment and reduced opportunities for questions and collaboration; 'providing options' led to an aligned approach with opportunities for questions and fuller participation in the decision-making process. The findings are discussed in the context of clinical uncertainty, moral responsibility and the implications for medical communication training and guidance.
Shaw C; Stokoe E; Gallagher K; Aladangady N; Marlow N
Sociology Of Health & Illness
2016
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: 10.1111/1467-9566.12455