Experiences and Needs of Parents of Palliative Paediatric Oncology Patients: A Meta-Synthesis
child; cancer; parents; palliative care; end-of-life; paediatric
INTRODUCTION: Despite palliative care being offered to paediatric cancer patients, it has limited utilisation and often excludes parental support. Therefore, this review aims to consolidate evidence regarding experiences and needs of parents of end-of-life palliative paediatric oncology patients. METHODS: Six electronic databases were searched as follows: CINAHL, The Cochrane Library, Embase, PubMed, Scopus and PsycINFO. Included studies were appraised using the Critical Appraisal Skills Programme Checklist. They were then analysed using a two-step approach comprising firstly meta-summaries followed by meta-synthesis for generating fresh insights to the topic. RESULTS: Thirteen studies were included. Three themes emerged as follows: (1) normalising the pain; (2) failure as a parent; and (3) importance of communication and social support. Parental experiences included moving on despite the pain and harbouring hopes for their children. However, parents felt immense guilt and a sense of failure in carrying out their parental roles. Effective communication with healthcare providers, availability of family support and religion were necessary to help them cope. CONCLUSIONS: Given the emotional challenges faced by parents, healthcare policies and practices should be revised to include parental support in paediatric palliative care services. Future healthcare communication trainings should consider parental need for sensitivity in communication, empathy and kindness from healthcare professionals.
Tan AJN; Tiew LH; Shorey S
European Journal of Cancer Care
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/ecc.13388" target="_blank" rel="noreferrer noopener">10.1111/ecc.13388</a>
Resolving Scottish paediatric end-of-life conflicts
Dispute; resolution; legal framework; mediation; paediatric; end-of-life; decision-making
This article considers mediation as a means of resolving decision-making disputes between clinicians and parents in paediatric end-of-life cases. It examines the legal tests applied in England and Wales and notes the lack of precedent in Scotland. The advantages, disadvantages and the most appropriate style of mediation are analysed. The conclusion reached is that whilst mediation offers benefits over litigation, mediation in its current form is not necessarily the ideal dispute resolution method in such cases. For it to be so, a legal and governance framework will be required.
Sivers S; Downie M
Medico-Legal Journal
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/10.1177/00258172221135416" target="_blank" rel="noreferrer noopener">10.1177/00258172221135416</a>
Compassionate Healthcare for Parents of Children with Life-limiting Illnesses: A Qualitative Study
Bereaved Parents; Family-Centred Care; Paediatric; Palliative Care; Patient-Centred Care
OBJECTIVES: Premature death of a child from a serious illness is probably one of the most painful experiences for a parent. This study examined the clinical experiences of bereaved parents of children with a life-limiting illness to provide recommendations for quality care. MATERIALS AND METHODS: Data were collected using semi-structured in-depth interviews with bereaved parents whose children had died at least 3 months before the interview. Parents were purposively sampled from two institutions offering end-of-life care to children with life-limiting illnesses. Data were analysed using thematic analysis. RESULTS: Data analysis revealed three main themes: (1) Clinical communication, (2) Healthcare infrastructure and (3) Non-physical aspects of healthcare. The seven subthemes uncovered were as follows: (1) Honesty and clarity, (2) empathy, (3) interdisciplinary communication, (4) inconveniences in hospital, (5) home palliative care, (6) financial burden of illness and (7) psychosocial and spiritual support. CONCLUSION: Strategies to improve healthcare for children and their families are multifold. Underlying the provision of quality care is compassion; a child and family-friendly healthcare system with compassionate providers and compassionate institutional policies are vital components to achieving quality healthcare. Culturally sensitive psychosocial, emotional and spiritual support will need to be integrated as standard care.
Chong L; Khalid F; Abdullah A
Indian Journal of Palliative Care
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/10.25259/ijpc_50_2021" target="_blank" rel="noreferrer noopener">10.25259/ijpc_50_2021</a>
Reimagining a Children's Palliative Care Educational Programme for Registered Nurses in Response to the COVID-19 Pandemic
Children with Life-Limiting Conditions; Children's nurse; End of Life Care; Nurse; Online education; Paediatric; Palliative Care; Teaching and Learning
BACKGROUND: Children with life-limiting conditions are a unique population with multiple health and social care needs. Key literature indicates the need for education to support registered nurses providing care, including palliative care, to these children. In response to the COVID-19 pandemic, a palliative care programme was converted to an online programme, adopting a blended approach between national and regional facilitators. OBJECTIVES: To assess nurses' satisfaction with a re-designed palliative care programme centred around the care of children with life-limiting conditions, including their perceptions of the online format. DESIGN AND METHODS: A descriptive correlational design and online survey was used to explore the participants' perception of the content and online delivery of the Care of the Child with a Life-Limiting Condition programme. Nine sessions, comprised of five national and four regional webinars, were delivered. RESULTS: Attendees registered (n = 169) from throughout the Republic of Ireland, with 130 attending all webinars. Attendees stated online delivery of education increased their accessibility to highly qualified experts. The short, concise nature of sessions was well received. Online delivery and recorded sessions contributed to convenience with the ability to access and process information in attendees' own time being welcomed. However, the negative impact of losing face-to-face interactions was noted, including the opportunity to build relationships with colleagues caring for children with life-limiting conditions. CONCLUSIONS: Results suggest that the redesigned online programme contributed to participants' knowledge, encouraged participation and increased accessibility. An e-Learning model enables specialised education to be more equitable and accessible, ensuring regional areas are not disadvantaged due to geographical remoteness from tertiary educational centres. However, the lack of face-to-face contact was acknowledged as a hindrance to socialisation and networking. When developing future programmes, focus should be put on creating opportunities for networking and social development to compensate for the lack of face-to-face contact.
Kennedy M; Loftus M; Lafferty T; Hilliard C; Reaper-Reynolds S; O'Donnell C
Nurse Education Today
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.nedt.2022.105569" target="_blank" rel="noreferrer noopener">10.1016/j.nedt.2022.105569</a>
Making room for life and death at the same time - a qualitative study of health and social care professionals' understanding and use of the concept of paediatric palliative care
Alleviation; Child; Concept; Health care professionals; Hospice and Palliative Care Nursing; Humans; Life limiting; Paediatric; Palliative care; Palliative Care/psychology; Pediatric; Ppc; Qualitative Research; Quality of Life; Social Support; Terminal care
BACKGROUND: The concept of pediatric palliative care (PPC) is applied differently within the healthcare system and among healthcare professionals (HCPs). To our knowledge, no studies have investigated how multidisciplinary HCPs understand the concept of PPC and the aim of this study was to explore the concept of PPC from the view of HCP in a paediatric setting. METHODS: We employed an explorative and descriptive design and conducted four focus groups with a total of 21 HCPs working in hospitals with children in palliative care. The data were analysed using qualitative content analysis. RESULTS: The data analysis of the concept of pediatric palliative care resulted in two themes. The first theme "A frightening concept that evokes negative emotions," contains categories to explore the meaning, named "An unfamiliar and not meaningful concept, "A concept still associated with death and dying" and "Healthcare professionals' responsibility for introducing and using the concept and, to obtain a common meaning." The second theme was named "A broad and complementary concept," containing the categories "Total care for the child and the family," "Making room for life and death at the same time" and "The meaning of alleviation and palliative care." CONCLUSIONS: The included HCPs reflected differently around PPC but most of them highlighted quality of life, total care for the child and the child's family and interdisciplinary collaboration as core elements. Attention to and knowledge among HCPs might change the perception about PPC from a frightening concept to one that is accepted by all parties, implemented in practice and used as intended. However, our study reveals that there is still some work to do before PPC is understood and accepted by all those involved.
Winger A; Früh EA; Holmen H; Kvarme LG; Lee A; Lorentsen VB; Misvær N; Riiser K; Steindal SA
BMC Palliative Care
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/10.1186/s12904-022-00933-4" target="_blank" rel="noreferrer noopener">10.1186/s12904-022-00933-4</a>
Initiation of Paediatric Advance Care Planning: Cross Sectional Survey of Health professionals reported behaviour
Paediatric; Advance care planning; Palliative care; Health professionals; life limited
BACKGROUND: Globally initiation of paediatric advance care planning discussions is advocated early in the illness trajectory however evidence suggests it occurs at crisis points or close to end of life. Few studies have been undertaken to ascertain the prevalence and determinants of behaviour related to initiation by the healthcare professional. METHOD: Underpinned by the Capability, Opportunity, Motivation - Behaviour (COM-B) model for behaviour change, a cross-sectional online survey was conducted in United Kingdom and Ireland using a purposive sample of health professionals. Descriptive and inferential statistics were applied and nonparametric statistical analysis used. Open-ended questions were mapped and correlations between COM-B and demographic profiles identified. RESULTS: Responses (n=140). Paediatric advance care planning was viewed positively however, initiation practices were found to be influenced by wide ranging diagnoses and disease trajectories. While some tools and protocols exist, they were not used in a systematic manner and initiation behaviour was often not guided by them. Initiation was unstandardised, individually led, guided by intuition and experience and based on a range of prerequisites. Such behaviour, combined with inconsistencies in professional development, resulted in varying practice when managing clinical deterioration. Professionals who felt adequately trained initiated more conversations (Capability). Those working in palliative care specialties, hospice settings and doctors initiated more discussions (Opportunity). There was no difference in Motivation between professions, clinical settings, or specialisms, although 25% (n=35) of responses indicated discomfort discussing death and 34% (n=49) worried about families' emotional reaction. CONCLUSION: Although advocated, paediatric advance care planning is a complex process, commonly triggered by the physical deterioration and rarely underpinned by support tools. The COM-B framework was useful in identifying fundamental differences in initiation behaviour however, further research is required to explore the complexity of initiation behaviour and the system within which the care is being delivered to identify influences on initiation.
Carr K; Hasson F; McIlfatrick S; Downing J
Child: Care, Health and Development
2021
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<a href="http://doi.org/10.1111/cch.12943" target="_blank" rel="noreferrer noopener">10.1111/cch.12943</a>
Children's palliative care education and training: developing an education standard framework and audit
Child; Children; Clinical Competence; Curriculum; Education; End of life care; Learning; nursing education; Paediatric; Palliative care; Teaching; Training
BACKGROUND: The need to align the range of guidance and competencies concerning children's palliative care and develop an education framework have been recommended by a UK All-Party Parliament Group and others. In response to these recommendations the need for a revised children's palliative care competency framework was recognized. A Children's Palliative Care Education and Training Action Group, comprising champions in the field, was formed across UK and Ireland in 2019 to take this work forward. Their aim was to agree core principles of practice in order to standardize children's palliative care education and training. METHODS: Over four meetings the Action Group reviewed sources of evidence and guidance including palliative care competency documents and UK and Ireland quality and qualification frameworks. Expected levels of developing knowledge and skills were then agreed and identified competencies mapped to each level. The mapping process led to the development of learning outcomes, local indicative programme content and assessment exemplars. RESULTS: Four sections depicting developing levels of knowledge and skills were identified: Public Health, Universal, Core, Specialist. Each level has four learning outcomes: Communicating effectively, Working with others in and across various settings, Identifying and managing symptoms, Sustaining self-care and supporting the well-being of others. An audit tool template was developed to facilitate quality assurance of programme delivery. The framework and audit tool repository is on the International Children's Palliative Care Network website for ease of international access. CONCLUSIONS: The framework has received interest at UK, Ireland and International launches. While there are education programmes in children's palliative care this is the first international attempt to coordinate education, to address lay carer education and to include public health.
Neilson S; Randall D; McNamara K; Downing J
BMC Medical Education
2021
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<a href="http://doi.org/10.1186/s12909-021-02982-4" target="_blank" rel="noreferrer noopener">10.1186/s12909-021-02982-4</a>
Fifteen-minute consultation: Paediatric organ and tissue donation
Paediatric; Pediatric; Organ donation; end-of-life conversations
This article explores ways in which paediatricians can help increase awareness and embed organ and tissue donation in the end-of-life care process. This can save patient lives on the organ transplant waiting list, many of whom currently die prematurely. The information benefits multidisciplinary staff including doctors, nurses and allied professionals to (1) recognise triggers for making referral to the specialist nurse for organ donation in order to make timely assessment for suitability for organ and/or tissue donation, (2) plan a multidisciplinary approach for families to make decisions for the gift of life and (3) help provide on-going support to families and staff. Copyright ©
Singh A; Scales A; Mildner R
Archives of Disease in Childhood: Education and Practice Edition
2021
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<a href="http://doi.org/10.1136/archdischild-2019-318457" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2019-318457</a>
The impact of digital health interventions on the psychological outcomes of patients and families receiving paediatric palliative care: A systematic review and narrative synthesis
palliative care; systematic review; psychosocial outcomes; paediatric; Digital health interventions
BACKGROUND: Digital health interventions are becoming increasingly important and may be particularly relevant for paediatric palliative care. In line with the aims of palliative care, digital health interventions should aim to maintain, if not improve, psychological wellbeing. However, the extent to which the psychological outcomes of digital health interventions are assessed is currently unknown. AIM: To identify and synthesise the literature exploring the impact of all digital health interventions on the psychological outcomes of patients and families receiving paediatric palliative care. DESIGN: Systematic review and narrative synthesis. DATA SOURCES: MEDLINE, EMBASE, Health Management Information Consortium, PsycINFO, Cumulative Index to Nursing and Allied Health Literature and the Midwives Information & Resource Service were searched on the 27th July 2020, in addition to the first five pages of Google Scholar. To be included in the review, papers must have contained: quantitative or qualitative data on psychosocial outcomes, data from patients aged 0-18 receiving palliative care or their families, a digital health intervention, and been written in English. RESULTS: Three studies were included in the review. All looked at the psychological impact of telehealth interventions. Papers demonstrated fair or good quality reporting but had small sample sizes and varied designs. CONCLUSIONS: Despite the design and development of digital health interventions that span the technological landscape, little research has assessed their psychosocial impact in the paediatric palliative care community. Whilst the evidence base around the role of these interventions continues to grow, their impact on children and their families must not be overlooked.
Archer S; Cheung NHY; Williams I; Darzi A
Palliative Medicine
2021
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<a href="http://doi.org/10.1177/02692163211026523" target="_blank" rel="noreferrer noopener">10.1177/02692163211026523</a>
Viral gene therapy for paediatric neurological diseases: progress to clinical reality
clinical; life-limiting; neurological diseases; paediatric; viral gene therapy
In the era of genomic medicine, diagnoses of rare paediatric neurological diseases are increasing. Many are untreatable and life-limiting, leading to an exceptional increase in gene therapy development. It is estimated that 20 gene therapy products will have received approval from the US Food and Drug Administration by 2025. With viral gene therapy considered a potential single-dose cure for patients with spinal muscular atrophy type 1 as one example, and contemporaneously tragically resulting in the deaths of three male children with X-linked myotubular myopathy receiving high-dose gene therapy in 2020, what is the current state of gene therapy? What is behind the decades of hype around viral gene therapy and is it high impact, but high risk? In this review, we outline principles of viral gene therapy development and summarize the most recent clinical evidence for the therapeutic effect of gene therapy in paediatric neurological diseases. We discuss adeno-associated virus and lentiviral vectors, antisense oligonucleotides, emerging genetic editing approaches, and current limitations that the field still faces.
Privolizzi R; Chu WS; Tijani M; Ng J
Developmental Medicine & Child Neurology
2021
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<a href="http://doi.org/10.1111/dmcn.14885" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14885</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
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<a href="http://doi.org/10.1136/archdischild-2020-320975" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2020-320975</a>
Paediatric end-of-life care - symptoms and problems: parent assessment
children; end-of-life care; paediatric; parent assessment; symptom experiences and/or burden
OBJECTIVE: Symptoms and problems (S&P) are under-reported in children in end-of-life care.To target future interventions, the primary aim was to examine S&P in children in end-of-life care. METHOD(S): All parents, who lost a child under the age of 18 years due to life-limiting diagnoses in the period 2012-2014 in Denmark, were invited to complete a self-administered questionnaire in 2017. In all, 152 (38%) children were represented by 136 mothers and 57 fathers. In the present study, parents' assessments of S&P during the last month of life were restricted to children aged 3-18 years. Data were analyses by means of descriptive statistics. RESULT(S): Children >=3 years at the time of death were represented by 71 parents (48 mothers and 23 fathers) representing 56 out of the 152 children. Physical fatigue (93%), sleepiness (90%), poor appetite (87%), pain (84%) and nausea (84%) were the five most frequent symptoms reported by the parents. In all, 65% of the parents reported that satisfactory pain relief was obtained and 64% of the parents reported that the healthcare services to a large extent reacted quickly, when the child and/or family needed help. However, 46% of the parents experienced 'mess-ups' or sloppy services in the primary ward and 27% experienced that the children suffered from fear of death. CONCLUSION(S): According to the parents, children with life-limiting diagnosis are highly symptomatic and have substantial problems during end-of-life care. Our findings indicate that systematic screening of S&P in children should be considered. Copyright © Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.
Lykke C; Ekholm O; Olsen M; Sjogren P
BMJ Supportive & Palliative Care
2021
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<a href="http://doi.org/10.1136/bmjspcare-2021-002891" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2021-002891</a>
Paediatric euthanasia in Canada: New challenges for end of life care
Paediatric; End of life; Palliative care; Maid
Canadians are looking to expand their Medical Assistance in Dying (MAID) program to include mature minors. Yet, little evidence exists to support this expansion. The Council of Canadian Academies released a report in December 2018 indicating that little is known about how mature minors make meaning of end of life care. To address this knowledge gap, research is needed to understand how mature minors make meaning of the dying process in the first place. Since social perceptions drive Canadian health care, practice, and end of life mentalities, the question that needs to be asked is: What is the Canadian perception of a good death for mature minors? To answer this question it is first necessary to examine the meaning that death and dying hold for mature minors, as voiced by mature minors themselves.
Lamb CM
Paediatrics and Child Health
2021
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<a href="http://doi.org/10.1093/pch/pxaa051" target="_blank" rel="noreferrer noopener">10.1093/pch/pxaa051</a>
Recommendations for speech-language pathologists in paediatric palliative care teams (ReSP3CT): An international modified Delphi study
child; end-of-life; paediatric; palliative care; speech-language pathology
Purpose: There is emerging recognition within the literature that speech-language pathologists (SLPs) have a role in the provision of paediatric palliative care (PPC). SLPs, however, experience unique challenges when working with this vulnerable young cohort of patients, their families and multidisciplinary teams. This study aims to develop practice recommendations based on best available evidence. Method(s): A modified Delphi technique was utilised to develop group consensus over a series of survey rounds. Statements for voting were synthesised by critically reviewing recurring themes from previous studies, involving (i) a scoping literature review, (ii) an online survey, and (iii) interview data. Nine participants were recruited using consecutive sampling from the interview phase related to this study. Result(s): Twenty-one statements were voted upon over two survey rounds (100% response rate). Agreement levels of >=70% across all statements were reached after the first round. There was a significant correlation between rating a statement as "essential" and a strong level of agreement (p<0.0001). Intraparticipant agreement between rounds is also reported. Conclusion(s): The 21 statements form Recommendations for Speech-Language Pathologists in Paediatric Palliative Care Teams (ReSP3CT). The statements will support SLPs working within PPC to promote advocacy, professional development and enhance team involvement in this developing field.
Krikheli L; Carey LB; Erickson S; Carey-Sargeant CL; Mathisen BA
International Journal of Speech-Language Pathology
2021
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<a href="http://doi.org/10.1080/17549507.2020.1866073" target="_blank" rel="noreferrer noopener">10.1080/17549507.2020.1866073</a>
COVID-19 Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection in children and adolescents: a systematic review of critically unwell children and the association with underlying comorbidities
Paediatric; Adolescent; Child; Comorbidity; Humans; Risk Factors; Severity of Illness Index; Prognosis; Critical Illness; Covid-19; Global Health; Comorbidities; Critically unwell; Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2); COVID-19/diagnosis/epidemiology
Data show that children are less severely affected with SARS-Covid-19 than adults; however, there have been a small proportion of children who have been critically unwell. In this systematic review, we aimed to identify and describe which underlying comorbidities may be associated with severe SARS-CoV-2 disease and death. The study protocol was in keeping with Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines. A total of 1726 articles were identified of which 28 studies fulfilled the inclusion criteria. The 28 studies included 5686 participants with confirmed SARS-CoV-2 infection ranging from mild to severe disease. We focused on the 108 patients who suffered from severe/critical illness requiring ventilation, which included 17 deaths. Of the 108 children who were ventilated, the medical history was available for 48 patients. Thirty-six of the 48 patients (75%) had documented comorbidities of which 11/48 (23%) had pre-existing cardiac disease. Of the 17 patients who died, the past medical history was reported in 12 cases. Of those, 8/12 (75%) had comorbidities.Conclusion: Whilst only a small number of children suffer from COVID-19 disease compared to adults, children with comorbidities, particularly pre-existing cardiac conditions, represent a large proportion of those that became critically unwell. What is Known: • Children are less severely affected by SARS-CoV-2 than adults. • There are reports of children becoming critically unwell with SARS-CoV-2 and requiring intensive care. What is New: • The majority of children who required ventilation for SARS-CoV-2 infection had underlying comorbidities. • The commonest category of comorbidity in these patients was underlying cardiac disease.
Williams N; Radia T; Harman K; Agrawal P; Cook J; Gupta A
European Journal of Pediatrics
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/10.1007/s00431-020-03801-6" target="_blank" rel="noreferrer noopener">10.1007/s00431-020-03801-6</a>
Factors associated with health professionals decision to initiate paediatric advance care planning: A systematic integrative review
adolescent; Child; terminal care; palliative care; advance care planning; paediatric; infant; decision making
BACKGROUND: Advance care planning for children with palliative care needs is an emotionally, legally and complex aspect of care, advocated as beneficial to children, families and health professionals. Evidence suggests healthcare professionals often avoid or delay initiation. An overview of evidence on the factors that influence and impact on the health care professional's initiation of paediatric advance care planning process is lacking. AIM: To review and synthesise evidence on the factors associated with health care professional's decision to initiate paediatric advance care planning. DESIGN: Systematic integrative review using constant comparison method. DATA SOURCES: Electronic databases (CINAHL, PubMed, PsycINFO, Ovid MEDLINE, EMBASE, Web of Science and Cochrane) using MeSH terms and word searches in Oct 2019. No limit set on year of publication or country. Grey literature searches were also completed. RESULTS: The search yielded 4153 citations from which 90 full text articles were reviewed. Twenty-one met inclusion criteria consisting of quantitative (n = 8), qualitative (n = 6) and theoretical (n = 7) studies.Findings revealed overarching and interrelated themes 'The timing of initiation', 'What makes an initiator, 'Professionals' perceptions' and 'Prerequisites to initiation'. CONCLUSIONS: This review provides insights into the complexities and factors surrounding the initiation of advance care planning in paediatric practice. Uncertainty regarding prognosis, responsibility and unpredictable parental reactions result in inconsistent practice. Future research is required to inform intervention to assist health care professionals when initiating paediatric advance care planning conversations.
Carr K; Hasson F; McIlfatrick S; Downing J
Palliative Medicine
2020
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<a href="http://doi.org/10.1177/0269216320983197" target="_blank" rel="noreferrer noopener">10.1177/0269216320983197</a>
Experiences of new nurses dealing with death in a paediatric setting: A descriptive qualitative study
death; experiences; novice nurse; nurses; paediatric
AIMS: To explore and describe the experiences, challenges and coping strategies of new nurses dealing with paediatric death in a clinical setting. DESIGN: A descriptive qualitative study design was used. METHODS: Semi-structured interviews were conducted to explore the experiences of 12 new paediatric nurses from a tertiary public hospital in Singapore. Data were collected from September 2019-December 2019. A thematic analysis was performed for data analysis. RESULTS: Four themes were generated: (a) a spectrum of emotions; (b) the 'blame' game; (c) getting through the grief; and (d) new nurses' wish list. The new nurses tended to be emotionally affected by their first death experience. They felt anxious and personally responsible for the death but eventually controlled their emotions. Colleagues, religion and self-actualization were key in overcoming grief. CONCLUSION: The experiences nurses go through at the early stages of their profession shape future workplace attitudes. Additional training and support should be provided to new nurses to build their confidence in managing end-of-life care. Training should include cultural awareness and communication skills to equip nurses with the necessary skills. IMPACT: This research will have an impact on institutions, which develop culturally congruent training and support platforms that prepare new nurses for nursing practice. This research will drive future investigations on the long-term effects of paediatric death on new nurses.
Chew YJM; Ang SLL; Shorey S
Journal of Advanced Nursing
2020
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<a href="http://doi.org/10.1111/jan.14602" target="_blank" rel="noreferrer noopener">10.1111/jan.14602</a>
Efficacy of the Paediatrics Palliative Care Team of Murcia according to the experience of the parents
death; article; child; female; human; male; palliative therapy; retrospective study; controlled study; human experiment; pediatrics; terminal care; shared decision making; satisfaction; Palliative care; newborn; questionnaire; pediatrician; bereavement support; End-of-life care; Improvements; observational study; Paediatric; Parental perspectives; Questionnaire; Survey
Introduction: The care at the end of children's lives must be sensitive to the needs of the child and their family. An understanding of the illness is required from the perspective of parents faced with the death of their child, in order to improve quality and guide the development of end-of-life care in Paediatrics. Method(s): A retrospective observational study was conducted between June 2014 and June 2017 using a questionnaire, to assess the needs, experiences, and satisfaction with the care received, from a sample of parents who lost a child due to a foreseeable cause. Three different study groups were formed based on the team responsible for end-of-life care, and an analysis was carried out on the differences between the group treated by the paediatric palliative care team, the group attended by non-palliative paediatricians, and the neonatal group. Result(s): Of the 80 eligible families, 64 could be contacted, and 28 (43.8%) finally completed the questionnaire. Our study shows positive experiences and high satisfaction of parents with the care received at the end of their child's life. The highest scores in experiences and satisfaction were given by the parents of the children served by the paediatric palliative care team, with statistically significant differences in family support, communication, shared decision making, and bereavement support (P < .05). Conclusion(s): Parents are satisfied with the care received at the end of their children's lives, but the intervention of a specific paediatric palliative care team improves the quality of care at the end of life in paediatrics. Copyright © 2019
Plaza Fornieles M; Garcia-Marcos B P; Galera Minarro A M; Barbieri G; Bellavia N; Bermudez Cortes M D M; Navarro M A
Anales de Pediatria.
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/10.1016/j.anpedi.2019.07.001" target="_blank" rel="noreferrer noopener">10.1016/j.anpedi.2019.07.001</a>
Accessibility, utilisation and acceptability of a county-based home care service for sick children in Sweden
paediatric; home care service; preference for care; referral; satisfaction with care; utilisation
BACKGROUND: Home care service (HCS) for sick children is a complex healthcare service, which can be organised in various models. Despite the possibility to support family everyday life, the accessibility and utilisation may still be limited. The aim of this study was to (i) determine characteristics in referrals to county-based HCS, (ii) determine characteristics of referred children and (iii) assess acceptability of parents and children in county-based HCS. METHODS: Data on characteristics of referrals and referred children were collected from medical records of children 0-17 years of age, referred to eight HCS units during 2015-2018. Data on parental and child overall experience, satisfaction of, safety with, and preference for care, were collected from parents by a questionnaire. Descriptive and comparative statistics were used to analyse the data. RESULTS: Three hundred and fifty-five referrals led to one or more periods of HCS for 171 children in various ages with a wide range of illnesses. Children with cancer (30%) composed the largest group and administration of intravenous antibiotics accounted for 56% of the care tasks. Seven per cent of the referrals were to palliative home care. Thirty-eight referrals of 34 children were refused. There was an uneven distribution of the indication for referral, acceptance rate and diagnoses of children among HCS units. Parents reported their and their child's experience with the HCS visit as highly positive and preferred home care to hospital care in over 96% of the HCS in 212 visits. CONCLUSION: County-based HCS constitutes a supplement to hospital care for sick children with various illnesses through different stages of acute and long-term illness and at end of life, with high levels of acceptability. Few referrals and variation in referral characteristics and acceptance rate of referrals between HCS units led to unequal and inequitable accessibility and utilisation of HCS.
Castor C; Hallstrom IK; Landgren K; Hansson H
Scandinavian Journal of Caring Sciences
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/10.1111/scs.12678" target="_blank" rel="noreferrer noopener">10.1111/scs.12678</a>
Incorporating bereaved parents as facilitators and educators in teaching principles of palliative and end-of-life care
advanced practice nurse; bereaved parents; paediatric; palliative care; parent experiences
Objectives * Identify innovative ways to incorporate highly trained bereaved parent volunteers into educational opportunities in palliative care for health care providers and staff. * Describe the process of implementation and content of palliative care educational forums facilitated by bereaved parent educators. * Conduct training, support, and debriefing that is provided to bereaved parent volunteer educators and facilitators involved in staff education on palliative and end-of-life care. High quality medical education for all members of the clinical and supportive care team requires training in principles of palliative and end-of-life care, including symptom management, empathic communication, ethical considerations, and provision of support around the time of death and throughout bereavement. We have demonstrated that experiences of bereaved parents can augment and inform palliative care educational curricula in uniquely powerful and valuable ways. We present a novel and innovative palliative care training program facilitated by bereaved parents of children cared for at our institution, who now serve as volunteer educators in palliative care didactic forums for clinical staff. Current and ongoing educational events include quarterly offerings of the End of Life Nursing Education Consortium (ELNEC), and Quality of Life Seminars, two independent one-day training programs for nurses, support staff, advanced practice nurses, and physicians. These educational sessions utilize small groups, facilitated by a bereaved parent volunteer and a palliative care team member, to augment didactic teaching, encourage interactive discussion and questions, and allow practice in palliative care skills. Bereaved parents also function as facilitators and educators in intensive and interactive communication workshops for medical trainees and collaborate with palliative care physicians to teach communication skills in national forums in which they provide communication training and discuss fundamentals of bereavement support. Unquestionably, appropriate selection and training of bereaved parent educators is essential to programmatic success. Parents receive support through scheduled debriefings following each event, with additional one-on-one support provided as needed. Feedback from bereaved parent participants demonstrate unanimous perception of teaching opportunities as meaningful avenues to continue longitudinal relationships with the institution and create lasting legacies to honor their children. Our uniquely innovative integration of bereaved parents in education around palliative and end-of-life care is a model which we have observed to be an effective and beneficial intervention for both staff and parents.
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).
Snaman J; Kaye E; Levine D; Clark L; Wilcox R; Cunningham M; Baker J
Journal of Pain and Symptom Management
2018
<a href="http://doi.org/10.1016/j.jpainsymman.2017.12.128" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.12.128</a>
Palliative care professional's perceptions of barriers and challenges to accessing children's hospice and palliative care services in south east London: A preliminary study
Child; Only Child; Palliative Care; children; hospice; paediatric; palliative care; child; barriers and challenges
OBJECTIVES: Several barriers have been identified as preventing or delaying accessing to children's palliative care services. The aim of this study is to further explore such barriers from palliative care professionals' perspective from two London boroughs. METHODS: Qualitative- five children's palliative care professionals perceptions obtained from semi-structured interviews. RESULTS: Three themes emerged: availability and adequacy of child palliative care (e.g., unreliability of services), obstacles to accessing palliative care (e.g., logistical challenges) and cultural values and family priorities. CONCLUSION: These findings contribute to the equal opportunities dialogue in this sector and the need for future research to address the challenges identified.
Pentaris P; Papadatou D; Jones A; Hosang GM
Death Studies
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/10.1080/07481187.2018.1430081" target="_blank" rel="noreferrer noopener">10.1080/07481187.2018.1430081</a>
Paediatric palliative care at home: a single centre's experience
Palliative Care; location of death; home care; paediatric
INTRODUCTION: There is increased awareness of paediatric palliative care in Malaysia, but no local published data on home care services. We aimed to describe the paediatric experience at Hospis Malaysia, a community-based palliative care provider in Malaysia. METHODS: We conducted a retrospective case note review of patients aged up to 21 years who were referred to Hospis Malaysia from 2009 to 2013. RESULTS: A total of 137 patients (92 male, 45 female) with a median age of 140 (3-250) months were included in this study. The majority (71.5%) had malignancies. At referral, 62 patients were still in hospital and 17 died prior to discharge. A total of 108 patients received home visits. At the first home visit, 89.8% of patients had at least one physical symptom. Pain was the most common (52.5%) symptom. Patients had various supportive devices: 39 were on feeding tubes, ten had tracheostomies, five were on bilevel positive airway pressure and ten had urinary catheters. 66 families discussed the preferred location of care at end-of-life. Among those who died, 78.9% died at home, as they preferred (p < 0.001). Regression analysis showed no statistically significant association between a home death and age, diagnosis and number of home visits. Bereavement follow-up occurred for 93.3% of families. CONCLUSION: Community care referrals tend to occur late, with 25.5% of patients dying within two weeks of referral. At referral, patients often had untreated physical symptoms. The majority of families preferred and had a home death.
2016-02
Chong LA; Khalid F
Singapore Medical Journal
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).
Journal Article
<a href="http://doi.org/10.11622/smedj.2016032" target="_blank" rel="noreferrer">10.11622/smedj.2016032</a>
The 'surprise' question in paediatric palliative care: A prospective cohort study
Paediatric; Palliative Care; Prognosis; Survival
Background: The question ‘would you be surprised if this patient died in the next 12-months’ is widely used for identifying adult patients in the last year of life. However, this has not yet been studied in children.
Aim: To assess the prognostic accuracy of the surprise question when used by a multidisciplinary team to predict survival outcomes of children with life-limiting conditions over a 3 and 12 month period.
Design: A prospective cohort study.
Setting/participants: Six multidisciplinary team members working in a children’s hospice answered a 3 and 12 month surprise question about 327 children who were either newly referred or receiving care at the hospice between 2011 and 2013.
Results: The prognostic accuracy of the multidisciplinary team for the 3 (and 12)month surprise question were: sensitivity 83.3% (83.3%), specificity 93.2% (70.7%), positive predictive value 41.7% (23.6%), negative predictive value 99% (97.5%) and accuracy 92.6% (71.9%). Patients with a ‘no’ response had an increased risk of death at 3 (hazard ratio, 22.94, p ⩽ 0.001) and 12 months (hazard ratio, 6.53, p ⩽ 0.001).
Conclusion: The surprise question is a highly sensitive prognostic tool for identifying children receiving palliative care who are in the last 3 and 12 months of life. The tool is accurate at recognising children during stable periods demonstrated through a high negative predictive value. In practice, this tool could help identify children who would benefit from specialist end of life care, act as a marker to facilitate communications on advance care planning and assist in resource allocation.
Burke K; Coombes LH; Menezes A; Anderson AK
Palliative Medicine
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/10.1177/0269216317716061" target="_blank" rel="noreferrer">https://doi.org/10.1177/0269216317716061</a>
Seizure Management In End Of Life Care For Children
Hospice Care; Midazolam; Paediatric; Seizures; Terminal Care
Objective: Controlling seizures in children approaching death is often challenging. The evidence base to guide best practice is limited. We aimed to compare our current practice against the guidance for seizure management produced by the Association of Paediatric Palliative Medicine, and the Children's BNF, seeking to improve symptom control in this situation. Methods: Retrospective case note review of episodes of challenging seizure management in children receiving end-of-life care over a ten year period (2006-2015) in the southwest region of England. Results: We reviewed 18 cases where seizure management in EOL care was difficult. 6 (33%) had a malignancy, 8 (44%) had a progressive neurodegenerative condition, and 4 (22%) had a static neurological condition with associated epilepsy. 13 (72%) died in their local hospice, 4 (22%) at home, 1 (6%) in hospital. 17 (94%) involved the use of subcutaneous or intravenous midazolam infusion, for a mean of 11 days (range 3-27). There was a wide range of starting doses of midazolam, and 9/17 (53%) received final doses in excess of current dose recommendations. 6 (33%) received subcutaneous phenobarbital infusions, with 4/6 (67%) receiving final doses in excess of current dose recommendations. Plans for adjustments of infusion rates, maximal doses, or alternative approaches should treatment fail were inconsistent. In 17 (94%) cases seizures were controlled before the child died, but often this took hours or days. Fear of apnoea or over-sedation was the biggest barrier to prompt symptom control. Staff found the experience of managing seizures at end-of-life challenging and stressful. Conclusions: Seizure management in end-of-life care is inconsistent. Despite limited evidence, best-practice management guidance should be developed to support improvements in this area of symptom control.
Harris N; Baba M; Beringer A; Mellor C; Rogers R; Taylor K; Sharples P
Developmental Medicine And Child Neurology
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).
10.1111/dmcn.13347