Survival, short-term morbidity of extremely low gestational age infants and their predictors
Infant; sepsis; cohort analysis; controlled study; female; human; male; retrospective study; perception; palliative therapy; Pregnancy; stillbirth; gender; necrotizing enterocolitis; clinical article; gestational age; neonatal intensive care unit; prevalence; infant; conference abstract; birth weight; corticosteroid; length of stay; mortality risk; Gestational Age; brain hemorrhage; regression analysis; univariate analysis; survival prediction; encephalomalacia; morbidity; lung dysplasia; probability; retrolental fibroplasia
BACKGROUND: Despite advances in neonatal care for extremely low gestational age (ELGA) infants, they experience high rates of mortality and morbidity. Local data on survival, predictors, and outcomes of ELGA infants is crucial in order to provide accurate antenatal counseling. <br/>OBJECTIVE(S): To determine the survival and morbidities of ELGA infants in our region stratified by gestational age. DESIGN/METHODS: We performed a retrospective cohort study of infants born at <26 weeks gestational age who received intensive care at two level III Neonatal Intensive Care Units between January 1st 2014 and December 31st 2017. We excluded stillbirths and infants who received only palliative care from birth. Outcomes included survival to discharge home (or transfer to another center), length of admission, and the following short-term morbidities: intraventricular hemorrhage (IVH) grade III - IV, periventricular leukomalacia (PVL), bronchopulmonary dysplasia (BPD), necrotizing enterocolitis (NEC) Bell's Stage >=2, late-onset sepsis, and retinopathy of prematurity (ROP) requiring treatment. A multivariable regression analysis was performed to analyze three factors identified as significant (p<.05) on univariate analysis. <br/>RESULT(S): 117 infants were included: 8 infants at 22 weeks, 20 at 23 weeks, 38 at 24 weeks, and 51 at 25 weeks. The rates of survival were 37.5%, 50.0%, 68.4%, and 76.5% at 22, 23, 24, and 25 weeks, respectively. The probability of survival was similar for infants born at 22 and 23 weeks GA and significantly lower than for infants born at 24 and 25 weeks (fig.1). The mean (+/-SD) length of stay in the NICU was 114.6 +/- 33.7 days. The overall prevalence of short-term morbidities was 25.9% for IVH grade III - IV, 5.4% for PVL, 89.9% for BPD, 16.1% for NEC, 40.0% for late-onset sepsis, and 19.3% for ROP requiring treatment. Only 2.7% of infants who survived >=36 weeks (post-menstrual age) had no short-term morbidities. The multivariable regression analysis demonstrated: an increased risk of mortality for every 100g decrease in birth weight (OR=1.97; 95% CI: 1.40 - 1.98; p =.02), an increased risk of mortality for an incomplete course of antenatal corticosteroids (OR=1.58; 95% CI: 1.2 - 1.78; p =.008), and no effect of gender on mortality over time (OR=1.38; 95% CI: 0.8 - 1.68; p=.15). <br/>CONCLUSION(S): ELGA infants from our region faced similarly high rates of mortality and major short-term morbidity compared to other Canadian centers. Infants born at 22 and 23 weeks experienced similar survival trajectories, which should be further explored as it may influence clinical perceptions of viability at 22 weeks. (Figure Presented).
Kis H; Lemyre B; Radonjic A; Feberova J
Paediatrics and Child Health
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/10.1093/pch/pxz066.129" target="_blank" rel="noreferrer noopener">10.1093/pch/pxz066.129</a>
Pediatric Cancer and Palliative Care in Conflict Affected Area
child; Palliative Care; controlled study; female; human; major clinical study; male; palliative therapy; survival rate; pain; awareness; cancer patient; cancer survival; university hospital; opiate; conference abstract; refugee; medical society; health insurance; investment; Turkey (republic); cancer control; hospital bed capacity; Turk (people)
Background/aims: Turkey has a population fo 85 million and also hosts the larger number of refugees with 3,7 million mainly from Syrian. Globocan 2020 data estimates 233,000 new cancer cases and 126,000 deaths due to cancer. By the end of the 90s, the palliative care (PC) services were very limited with lack of trained professionals, low awareness and limited access to opioids. <br/>Method(s): The investments from Professional organizations and goverment started mainly after 2000's but still limited. The first Cancer Control Programme was released by Ministry of health (MoH) in 2008, and implemented the Palliaturk project in 2011, targeting the pain control and community based PC model. PC directive was released in 2015. <br/>Result(s): The International PC scale ranking named Turkey in group 2 in 2006, and moved up to group 3b in 2011, then in group 3a in 2017, which is the isolated PC provision. After the start of Palliaturk project in 2011, the investment continued from the MoH. The number of the beds for palliative cares were increased to 5577 in 2021 which was very low in number before 2014. Turkey also implemented the Universal Health Coverage in 2012, >98% of the population are covered by UHC. In a short survey from the 21 Southern Turkey's major University hospitals, only 8 has palliative care services and 4 has palliative care exclusive staff although providing the PC services. Twelwe was also providing the PC services for refugees. The annual number of new pediatric cancer patients is estimated around 3000 per year, the palliative care services were mainly provided within the oncology services. There were 10 paediatric PC services with 119 bed capacity in 2021 for all pediatric patiens in nation, not specifically for cancer patients. In a recent analysis of cancer in Syrian refugees living in the city of Konya, we reported the 3 year survival rates as 69.5 probably less in 5 years. We also found that the 5 years survival rates was about 30% in Syrian refugee children with cancer living in Southern Turkey. The five years survival rates for Turkish children is about 70%. <br/>Conclusion(s): There is still a need of investment on palliative care services for pediatric cancer patients and integration of PC services to current cancer care is also essential.
Kutluk T
Palliative Medicine
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/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener">10.1177/02692163231172891</a>
Exploring the Palliative Care Needs of Children in Refugee Settlements in Uganda
Child; child; Palliative Care; adult; human; chronic disease; palliative therapy; needs assessment; data analysis; Only Child; distress syndrome; conference abstract; refugee; Uganda; Uganda; thermometer; mentor; refugee camp
Background/aims: Palliative care for children should be provided wherever the child is who needs care, whether that be at home, at school, in a clinic, in a hospital, in a hospice, as well as including in humanitarian settings. It should be provided by all health providers and not just by palliative care specialists. Since 2016 the importance of palliative care within humanitarian crises settings has been recognised, with palliative care being included in the SPHERE handbook in 2018 and the ongoing development of guidelines for paediatric palliative care in organisations such as Medicines San Frontieres (MSF) and the publication of a handbook by the World Health Organization. However, there has been minimal data with regards to the need for palliative care provision in humanitarian settings. Work in several countries is ongoing to understand the needs of people - both adults and children, living with chronic diseases amongst refugee communities. In Uganda there are approximately 1.45 million refugees, 59% of whom are children. This paper will report on some of the work being undertaken in Uganda to explore the palliative care needs of children in refugee settlements. <br/>Method(s): Mixed methods study in refugee populations including rapid participatory appraisal, training and mentorship and needs assessment undertaken between 2018 and 2022, in host and refugee populations in Obongi and Adjumani Districts, Northern Uganda. Tools used include the children's palliative outcome scale, the distress thermometer and ECOG. Ethical approval was gained from UNCST and children with unmet clinical needs were signposted for support. <br/>Result(s): The results of several studies undertaken in Northern Uganda will be reported on. Initial data suggests high levels of need for children's palliative care, with significant unmet PC need and high levels of distress amongst children and their families. Data analysis is ongoing and initial results will be shared in this presentation. <br/>Conclusion(s): It is essential that we address the palliative care needs of children living in humanitarian settings. Yet little is known of the magnitude of the need for children's palliative care in such settings, nor the burden of unmet need. Studies such as this one will contribute to the evidence base for providing palliative care for children in humanitarian settings beyond that of anecdotal accounts and contribute towards recommendations for the provision of children's palliative care in humanitarian settings.
Downing J; Santiago T; Opia V; Oziti G; Namukwaya E; Nabirye L; Maku S; Nalutaaya F; Bagasha P; Smith C; Ikong H; Venkatesh C; Howarth K; McGeough K; Grant L; Leng M
Palliative Medicine
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/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener">10.1177/02692163231172891</a>
Pediatric Palliative Care Program Implementation in Low- and Middle-income Countries: A Systematic Review Using a Strengths, Weaknesses, Opportunities and Threats Analysis
child; Palliative Care; human; palliative therapy; hospice; education; systematic review; human experiment; psychosocial care; conference abstract; multidisciplinary team; middle income country; government; lowest income group; Preferred Reporting Items for Systematic Reviews and Meta-Analyses; resource limited setting
Background/aims: Of the estimated 21 million children world-wide who need access to pediatric palliative care (PPC), about 97% currently reside in low-and middle-income countries (LMIC). Access to PPC programs in LMIC are limited, and successful strategies and barriers to program implementation remain understudied. We conducted a systematic review to characterize the strengths, weaknesses, opportunities, and threats (SWOT) of PPC program implementation in LMIC. <br/>Method(s): Using PRISMA guidelines, we searched key databases from inception to April 2022 and reviewed references manually. Eligible abstracts and articles included content related to composition, role, function, purpose, development, or implementation of PPC programs in LMIC. <br/>Result(s): From 7,846 titles and abstracts and 229 full-text articles, we identified 62 eligible abstracts and articles; 16 articles were added following manual searching of references, resulting in 78 items (28 abstracts, 50 articles). A total of 82 unique programs were described, including 9 from low-income, 27 from lower-middle income, and 44 from upper-middle income countries. Common strengths included presence of multidisciplinary teams and psychosocial care. Common weaknesses included lack of PPC training and research infrastructure. Common opportunities involved collaboration between institutions, government support, and growth of PPC education. Common threats comprised limited access to PPC services, medications, and other resources. (Table Presented) <br/>Conclusion(s): PPC programs are being successfully implemented in resource limited settings. Hospice and palliative medicine organizations should sponsor PPC clinicians to describe and disseminate more detailed descriptions of successes and challenges with program implementation to help build and grow further PPC initiatives in LMICs.
Kenneson SA; Hughes-Visentin A; Doherty M; Kaye E; Wrigley J; Gujral P; Lodhi S; Phadke S; Rayala S; Gentica X; Malipeddi D; Sarvode S
Palliative Medicine
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/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener">10.1177/02692163231172891</a>
An innovative hybrid palliative care fellowship program: empowering pediatricians and enhancing care for children in resource-limited settings
child; Canada; Palliative Care; pediatrics; Bangladesh; controlled study; female; human; major clinical study; male; child health; palliative therapy; total quality management; India; pediatrician; skill; clinical examination; conference abstract; Philippines; learning; rotation; leadership; teaching; rigor; career; mentor; running; resource limited setting; Southeast Asia
Objective To describe the development and implementation of a 1-year 'Hybrid' Pediatric Palliative Care (PPC) Fellowship, which includes both clinical and online learning to train paediatricians as specialists and leaders in paediatric palliative care in South and Southeast Asia. Methods Globally, 97% of children needing palliative care (PC) live in low- or middle-income countries, where access is often very limited. In India, less than 1% of the 1.6 million children needing PC can access these services. Building capacity and training opportunities for paediatricians are essential to improve access to PC in these settings. The Hybrid fellowship was developed through the existing partnership between Two Worlds Cancer Collaboration, Canada and the Hyderabad Centre for Palliative Care to train paediatricians as specialists and leaders in paediatric palliative care in South and Southeast Asia. A team of PPC experts developed the fellowship after a rigorous review of relevant literature and educational materials, incorporating their experiences running PPC traditional (in-person) fellowship programs in both high and lowerresourced settings. Results The fellowship includes formal teaching, clinical rotations, mentorship, regular assessments of trainees, and a scholarly project. Teaching includes 100 hours of weekly online classes, with a focus on case-based learning and leadership skills. Mandatory 4 months of clinical rotations in PC includes 2 months in the regional centre of PPC excellence in Hyderabad, India. Trainees' progression towards program competencies is assessed through written and observed standardised clinical examinations. A mentorship program provides additional support, which continues beyond the fellowship through an early career mentorship group. As a part of research and quality improvement (QI) training, fellows complete a scholarly project with support and supervision from experienced research mentors. More than 30 regional and international PPC experts contribute to the program as faculty. Since 2021, 6 paediatricians have completed the 'Hybrid' fellowship, from India (2), Bangladesh (1), and the Philippines (3), with 3 fellows currently in training. Graduated fellows have become regional and national leaders in PPC, developing new PPC programs, and implementing new PPC training in their home country. The program successfully sought endorsement from the Royal College of Paediatrics and Child Health (UK), which has strengthened the program's rigor and quality. Conclusion A 1-year Hybrid PPC Fellowship, which trains pediatricians to become specialists and champions of PPC, is an innovative model that can successfully build PPC capacity in resource-limited settings and increase access to PPC for children with life-limiting illnesses.
Palat G; Doherty M; Brown S; Shah A
Archives of Disease in Childhood
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/10.1136/archdischild-2023-rcpch.53" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.53</a>
Support for families of a child in a palliative situation in the cardiac pediatric intensive care unit
child; female; human; male; Intensive Care Units; patient care; palliative therapy; intensive care; pediatric intensive care unit; nursing; terminal care; Medline; systematic review; Cinahl; satisfaction; rare disease; conference abstract; decision making; memory; holistic care; heart
Background and Aim: The birth prevalence of children with congenital heart disease is about one percent a year. This might mean that a palliative diagnosis maybe directly exists from birth due to the complexity of the congenital heart disease. The required intensive care stay that may follow after birth presents a challenge for parents. To care for the family, the concept of family-centered care is presented and the involvement of the pediatric palliative care team is considered. The aim was to identify nursing measures which support families of a child in a palliative situation in the cardiac pediatric intensive care unit. Method(s): This literature search was conducted between January 1, 2022 and May 31, 2022 in Medline via PubMed, CINAHL and Cochrane research databases and was based on defined inclusion and exclusion criteria. Studies from the PICU and NICU as well as studies focusing on end-of-life care were considered, as it can be assumed that the results may be transferable. Studies with an exclusive oncological focus or specific rare diseases were excluded. Result(s): Seven main categories could be identified to support the parents. The communication, the parental participation in the decision-making process, continuity of care and relationship building. Also the griefing process and memory making takes place. At least challenges in the intensive care unit and satisfaction with care and unmet needs are highlighted. Conclusion(s): The included studies suggest important features of communication and can be partially transferred to the implementation of nursing measures with the help of family-centered care. The necessity of the need to involve parents in the care of the child can be demonstrated in the majority of the studies. Therefore, appropriate communication and parental participation in the whole process should be considered as the focus of care. For holistic care, the involvement of the palliative pediatric care team should be evaluated early. Due to the limitations of the studies and the low level of evidence, the results must be viewed with caution. Further research is needed to comprehensively map the specific area of the cardiac pediatric intensive care.
Wieden N; Eissler AB; Kroger Y
Cardiology in the Young
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/10.1017/S1047951123001099" target="_blank" rel="noreferrer noopener">10.1017/S1047951123001099</a>
Enhanced symptom management clinicparental evaluation. Does it help?
child; hospital admission; human; pain; seizure; bodily secretions; dystonia; questionnaire; conference abstract; teleconsultation; thorax; access to information; running; video consultation
Objectives Questionnaire evaluation of a newly developed Enhanced Symptom Management clinic held at the local children's hospice to support children and young people (CYP) with life limiting (LLC) and life threatening conditions (LTC). Methods A paper questionnaire was sent to all families who were attending the enhanced symptom management clinic and were still alive. This was followed up by a QR link for those who hadn't responded to the original paper questionnaire. A shorter questionnaire was sent to health care professionals involved with the care of these CYP for their opinion as well. Results The number of times the CYP/family had attended the clinic varied from 1- 6 times with a combination of face to face, video consultation and telephone consultation. Has the clinic helped in the management of your child/ young person's symptoms? Responses were very helpful or helpful. The common themes around what was helpful or useful with regards to attendance at the symptom clinic related to: * Emergency planning to help avoid hospital admission for symptoms including- pain, secretions, dystonia, feed intolerance, seizures, chest management * Holistic planning * Symptom plan development to make emergency hospital admissions more straight forward * Clarity around medications - what and when to give * Families felt listened to and supported by the clinician's delivering the clinic Conclusion The enhanced symptom management clinic has been running since November 2020 and has provided a different environment to help support and manage these complex CYP. Families feel confident in how to manage their children more at home and have permission to alter medications if required depending on what their child's symptoms are like. Utilising video and telephone consultations has also enabled families' access to their clinician without the challenges involved with getting a complex needs child out of the house to a hospital. Ward doctors in training have ready access to information on how to manage these complex patients when they come in unwell, making emergency admissions less stressful for them and the families. Symptom plans continue to evolve and now also include some information about what the CYP is like when they are well and how they would usually communicate. These clinics aren't there to take the place of their specialist, but to help with care coordination and provide an holistic overview of what the child is experiencing symptom wise in addition to more specialist palliative symptom management.
Thompson S; Roe L
Archives of Disease in Childhood
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/10.1136/archdischild-2023-rcpch.51" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.51</a>
Use Of Buccal Fentanyl As A Breakthrough Opioid For Symptom Management In Patients Receiving Palliative Care
Palliative Care; child; female; human; male; retrospective study; pain; palliative therapy; hospice; clinical article; neurologic disease; Fentanyl; opiate; dyspnea; adolescent; case study; conference abstract; drug therapy; fentanyl; absence of side effects; buccal drug administration; drug megadose; maximum permissible dose; mouth cavity
Objectives Using transmucosal fentanyl as an opioid for rapid acting, needle-free breakthrough relief of symptoms is established within paediatric palliative medicine.1 2 Medication administration via the buccal route is commonly used in paediatric palliative medicine, especially towards the end of life. It does not rely on enteral absorption; it is generally well tolerated, and parents/carers can be taught to administer medication via this route. Buccal administration of fentanyl is possible3 4 but infrequently used as dosing guidance is not readily available including within the APPM formulary.2 Methods We performed a multi-centre retrospective case review of patients using buccal fentanyl under supervision of tertiary specialist palliative care teams (SPCTs). Information was gathered on patient age, diagnosis, symptoms (pain, dyspnoea), weight, starting doses, dose escalation, maximum doses, other symptom medications, setting in which patient was cared for, any administration difficulties and adverse effects. Results Buccal fentanyl (IV solution administered into the buccal cavity) was used in the management of 9 patients under the two SPCTs, with problems across the paediatric palliative care spectrum including those with severe neurological impairment and oncology diagnoses. Patients were aged 5 weeks to 17yrs 11 months with weights ranging from 4kg to 61.3kg (mean = 24.4kg). Fentanyl was used to manage pain and dyspnoea in 6 patients, dyspnoea in two, and pain in one. Starting doses for dyspnoea ranged from 0.4micrograms/kg to 0.9micrograms/kg (mean = 0.7micrograms/kg) and for pain ranged from 0.4micrograms/kg to 1.5micrograms/kg (mean = 0.9 micrograms/kg). Three patients required dose escalation as part of their ongoing management with the highest dose required 20 micrograms/kg. Six patients were opioid naive at the time of starting fentanyl. Patients were cared for across community, hospice and hospital settings. No adverse effects were encountered. Administration difficulties occurred for one patient on high-dose fentanyl due to the large volume of the IV solution required for buccal administration (200 micrograms = 4mls). Conclusions The use of buccal fentanyl for breakthrough opioid medication as part of a palliative care symptom plan appears a safe and effective method of delivering fast-acting symptom relief which is well tolerated by patients and acceptable to families. This case series has demonstrated safe and effective starting doses for pain and dyspnoea management. for patients requiring higher doses the large volume of IV solution required for buccal administration may mean alternative preparations for trans-mucosal fentanyl administration become more practical.
Taylor N; Woods S; Hills M; Hain R; Box D
Archives of Disease in Childhood
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/10.1136/archdischild-2023-rcpch.54" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.54</a>
Evaluation Of Temporal Health System Factors Influencing Parallel Palliative Care Referral For Children With Complex Cardiorespiratory Diagnosis And Treatment
Palliative Care; child; controlled study; female; human; male; retrospective study; quality of life; palliative therapy; hospice; practice guideline; follow up; outcome assessment; artificial ventilation; clinical article; patient referral; education; consultation; pediatric intensive care unit; awareness; diagnosis; life sustaining treatment; hospital discharge; adolescent; surgery; infant; demographics; conference abstract; e-mail; decision making; trust; length of stay; nurse; writing; community care; heart graft; nursing staff; clinical nurse specialist; apparent life threatening event; organizational restructuring; oxygenation
Objectives Palliative care (PC) affirms life with goal to improve quality of life for patients with life-threatening conditions.1 PC referrals are influenced by multiple patient and provider factors, including staff awareness of guidelines, plus wishes of the child and family on preferred place of care.2 3 We evaluated the temporal effect on PC referrals at a quarternary cardiorespiratory paediatric intensive care unit (PICU) following organisational restructuring to integrate people-centred changes amidst complex diagnoses and advanced life-sustaining treatments. Methods Retrospective review of PC referral database between January and December 2022 was conducted, analysed on referral pathway, reviewed with decision-making process, patient demographics and outcome. Results The nurse-led service with ad hoc informal visits to offer PC support following requests from medical team was reorganised since service-level agreement for paediatric PC consultant attendance at our weekly complex care multidisciplinary meetings. Departmental education sessions and trust governance events were platforms to promote staff awareness on service and enhance referral pathway. PC referrals were made for 23 children(M:F 1.3:1), median age 13.8 months (range 10days -16.8years), under categories of life-limiting diagnoses (n=12, 52%) or acute life-threatening events (n=11, 48%), including resuscitative extracorporealmembrane-oxygenation.(Graph 1) Median time from admission to PC referral was 59 days (range 6-162) prior to standardised referral proforma in May2022, this reduced to 36 days (range -35 to 68) and 6 days (range 3-30) per 4-month period. One referral was made 5 weeks prior to an international repatriation for child with life-limiting diagnosis on long-term ventilation. Completed referral forms sent to a designated email address were passed onto PC consultants and clinical nurse specialist. Dedicated weekly PC days provided introductory 'meet-andgreet', follow-up 'check-in' or semi-structured meeting with PC team members for patients, families and staff. PC-led multidisciplinary meetings (including 2 online) were followed by real-time correspondence to medical and nursing staff with feedback, recommendations and action plan. 4 advanced care plans and 3 symptom management plans were completed; 9 hospice and 5 community care nursing team referrals were made whilst 2 families declined hospice. Median hospital length of stay was 69 days (range 6-390). 5 children survived to hospital discharge (3 died at home), and 8 are still in hospital (1 as heart transplant recipient). Conclusion Integrative culture during reorganisation can positively influence paediatric PC referrals. Event-triggered and diagnosis-based cues may help foster PC participation as continuing strategy to respond with support during disease, treatment and psychosocial burden for children and families.
Subhash S; Freitas D; Aidoo E; Nkulu G; Chan-Dominy A
Archives of Disease in Childhood
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/10.1136/archdischild-2023-rcpch.50" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.50</a>
An Audit Analysing The Standard Of Patient Care And Service Provision In Sppc At A Tertiary Hospital And Hospice
child; female; human; male; palliative therapy; clinical article; Hospices; patient referral; conference abstract; place of death; hospice care; patient coding; staff training; tertiary care center; sample size; manager; patient care
Objectives To identify gaps in SPPC provision at a patient and service level at the tertiary centre, local children's hospice and the region, compared to national frameworks and standards. Specialist paediatric palliative care (SPPC) aims to improve quality of life for children with life-limiting and life-threatening conditions. SPPC services were introduced at a tertiary hospital in 2012 and are in their infancy. As an underdeveloped speciality, there are gaps in provision across the region and little research has been carried out to identify them. Methods The last 15 children and young people (CYP) who died and were referred to tertiary SPPC services from the region were identified. Patient data were collected using hospital and hospice care databases and discussions with staff involved in patient care. Service provision data were collected by discussions with service managers. Results Only 80% of children and young people (CYP) had an Advance Care Plan (ACP). Of the CYP who required rapid transfer, none had a documented plan in an ACP. Preferred place of death was achieved in 67% of CYP. The average time from referral to SPPC to death was 38 days. Of the staff training standards, 80% were met at the tertiary centre and 91% at children's hospice. 73% of protocol standards were met by tertiary centre and 91% by the children's hospice. 56% of provision standards were met by tertiary centre and 69% by the children's hospice. 50% of the staffing standards were met at both services. Neither service met any of the data management and service improvement standards. Conclusion These data showed no major gaps in patient care standards, although improvement is needed to ensure all CYP have ACPs. Major gaps were identified in service improvement and data management in comparison to national standards. Providing a 24-hour SPPC service and improving data collection could address this. A limitation of this audit is the small sample size.
Durrant E; Warlow T; Coulson-Smith P; Renton K
Archives of Disease in Childhood
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/10.1136/archdischild-2023-rcpch.52" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.52</a>
What constitutes 'good quality care' from the perspectives of children and young people with life-limiting and life-threatening conditions?
Child; child; female; human; male; outpatient; preschool child; clinical article; Only Child; hospital patient; nervous system; malignant neoplasm; developmental stage; adolescent; conference abstract; semi structured interview; conversation; genetic transcription; social care
Objectives Children with life-limiting and life-threatening conditions (LLLTC) have complex needs and are high users of health and social care. Several quality standards exist that highlight the importance of addressing the needs and wishes of children and young people (CYP) with LLLTC in paediatric palliative care. However there is limited evidence about what children themselves think is important. The aim of this study is to consider what constitutes good quality care from the perspectives of CYP with LLLTC. Methods Nine UK inpatient and outpatient settings supported recruitment of CYP aged 5-17 with LLLTC to participate in qualitative semi-structured interviews. Care quality was coded within a larger framework analysis. Analysis of verbatim transcripts was supported by NVivo. Results 26 children and young people with a range of LLLTCs (10 gastrointestinal, 6 cancer, 5 neurological, 3 congenital, 1 metabolic, 1 respiratory) were interviewed. Three domains of quality care were identified: 1) good communication with the health and social care professionals that care for CYP; 2) being enabled to be a CYP during their care; and 3) how professionals can best alleviate their symptoms and concerns. Children and young people spoke about the significance of being cared for attentively, by professionals that they know and who make an effort to know them. They want symptom relief in comfortable settings tailored to their needs and interests. It was important to facilitate activities that are appropriate to their cognitive age. CYP also value being included in conversations about their care in an appropriate way. When health and social care professionals ask CYP about things that are important to them it demonstrates that they care. Conclusion Children and young people with life-limiting and life-threatening conditions have unique and important views about what they want from their care. CYP appreciate professionals making an effort to know them in a way that is appropriate to their developmental stage, and explicit opportunities to be part of communication about their care. Quality care must be informed by CYP views, including those with serious, complex illness. Our study has demonstrated that they can provide useful and specific input. Experiential data on quality of care should be collected alongside outcome data.
Braybrook D; Coombes L; Scott HM; Haroardottir D; Bristowe K; Fraser L; Harding R
Archives of Disease in Childhood
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/10.1136/archdischild-2023-rcpch.517" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.517</a>
A One Day Paediatric Palliative Care Study Day Improves Skills
Palliative Care; child; controlled study; female; human; male; advance care planning; ethics; palliative therapy; clinical article; consultation; human experiment; questionnaire; conference abstract; skill; learning; appetite
Objectives To see if a network Palliative Care Study day increases knowledge of participants. Method This was the first paediatric palliative care network study day run in the region. 20 doctors (both consultants and those in training) participated. The day was a mixture of presentations and in depth work shops covering advance care planning discussions (with actors); symptom management and discussion of ethical and legal principles underpinning palliative care. The course was run face to face. A pre-course questionnaire was sent out online to applicants to gain an understanding of their prior knowledge and their learning objectives. Post course feedback was obtained via paper questionnaire at the end of the study day. Results Participants ranked their pre-course knowledge of Advance Care Planning; End of life processes; Symptom Management; Ethics in palliative care as 3/5 (mode and median, n=19) and post course as 4 (mode and median, n=16). 100% of respondents would recommend this course to a colleague and 100% felt the course met the objectives. Feedback on how to improve identified an appetite for clinicians to have more practice in discussing advance care planning with families. Conclusion Feedback identified clinicians (both those in training and consultants) do not feel equipped to start advance care planning discussions, manage symptoms or know what to do when a child dies. Our study day demonstrated a gain in these skills.
Aidoo E
Archives of Disease in Childhood
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/10.1136/archdischild-2023-rcpch.55" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.55</a>
My Life Is a Mess but I Cope': An Analysis of the Language Children with Life-limiting and Life Threatening Illnesses Use to Describe their Own Condition
Child; child; controlled study; female; human; male; preschool child; emotion; clinical article; interview; Only Child; human experiment; human tissue; malignant neoplasm; thematic analysis; conference abstract; health status; literature; language; ambivalence; discourse analysis
Background/aims: Children with life-limiting and life-threatening conditions are rarely involved in research. Engaging them directly enables them to express the meaning of their condition in their own words. This study aimed to explore the language children use to describe their condition and its impact on their life, to inform strategies for engaging children about their priorities. <br/>Method(s): Semi-structured, qualitative interviews with purposively sampled children with life-limiting and life-threatening conditions. Data were analysed using thematic analysis, discourse analysis and the discourse dynamics approach to identify figurative language. <br/>Result(s): Participants: 26 children (6 cancer; 20 non-cancer) aged 5-17. <br/>Finding(s): Children as young as five provided rich descriptions of their condition, including: diverse negative emotions often contextualised by what they 'can't do' ('can't do anything', 'can't go anywhere'), and comparisons to healthy ('normal', 'usual') peers, with their condition singling them out ('the one that has something,' 'the sick one'). Others expressed ambivalence ('doesn't bother me', 'not really fussed') or acceptance using idiomatic phrases ('I can live with that', 'you're still you, you haven't gone anywhere'). Metaphor were common, including familiar journey and battle metaphors, and novel usages related to zombies, gaming, superheroes, toys and animals. Children used medical jargon related to their condition, combined with preferred words for their body ('tummy', 'belly', 'butt') and had capacity to create comparatives and superlatives to describe symptom severity (no hurt, hurt a bit, a whole lot, like crazy, really hurt, worse, better). <br/>Conclusion(s): Children make deliberate language choices when describing their condition, and can express holistic needs, and changes in health status. Clinicians should observe and mirror children's language to enhance discussions about priorities.
Bristowe K; Braybrook D; Scott HM; Coombes L; Harardottir D; Roach A; Ellis-Smith C; Fraser L; Downing J; Murtagh FE; Harding R
Palliative Medicine
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/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener">10.1177/02692163231172891</a>
Sharing care at the End of life for adolescent patients with neuro-disability: A case series
child; Adolescent; adult; female; hospital admission; human; male; palliative therapy; patient care; terminal care; young adult; clinical article; hospital discharge; groups by age; adolescent; deterioration; conference abstract; learning; adulthood; case study; neurodisability; bereavement support; community health nursing; family support; health hazard
Background Adolescents with long term conditions are recognised to have unique needs and to experience particular health risks as they transfer to adult services. Some young people with complex neuro-disability may live years following transfer to adult services; for others however, reaching adulthood coincides with a significant deterioration in their health. Identifying the best team to support the patient in this situation can be controversial. Community and hospital adult palliative care teams may have an important role to play in supporting these patients, yet clinicians may lack experience working with this age group or managing the symptoms associated with paediatric neurodisability. We present reflections from a series of 6 young adults who received shared-care from adult and paediatric palliative teams and raise discussion about the strengths and learning needs of the different teams involved. Intervention Over a period of 2 years, patients who were between the age of 15 and 19 years and experiencing a significant deterioration in their health were referred to the children's palliative care team for the North East North Cumbria region. Where appropriate, the children's team identified a local adult palliative care team and established a model of shared-care with this team. Findings Across the region 3 adult hospital palliative liaison teams and 4 adult community palliative care teams were involved in shared end of life care. Cross-team debriefs identified benefits including * Improved continuity of care * Access to out of hours support * Avoiding hospital admission/Safe discharge planning * Confidence with medication for symptom management * Access to local family support and bereavement services * Building relationships for future joint working * Support for adult and children's community nursing teams Conclusion Sharing end of life care between adult and paediatric palliative care services can improve the experience of young adults and their families.
Elverson J; Aspey H; Bond E; Mackerness C; Hoskins R; Shiell A
BMJ Supportive and 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/10.1136/spcare-2023-PCC.196" target="_blank" rel="noreferrer noopener">10.1136/spcare-2023-PCC.196</a>
How do children’s nurses working in hospices manage emotional labour and professional integrity in long-term relationships with parents?
Parents; child; female; human; male; ethics; Hospices; emotion; clinical article; hospice; mobile phone; human experiment; nurse; human tissue; thematic analysis; conference abstract; coping behavior; theoretical study; social media; telephone interview; nursing practice; emotional intelligence; professionalism; purposive sample
Background Children with life-limiting conditions are living longer, so relationships between nurses and families can span decades (Maunder 2013)2. Although long-term relationships between nurses and children/families in paediatric palliative care have been researched, studies undertaken exclusively in children's hospices (CH) are rare. Aims Develop an understanding of how CH nurses maintain professional integrity whilst providing long-term practical, emotional, social and spiritual care to parents. Explore coping strategies used by CH nurses to manage emotional labour. Methods Participants were a purposive sample of six registered children's nurses, employed at CH for minimum of 4 years. Participants told the story of a shift, focusing on interactions with parents. Data collected (January 2019-January 2020) via audio diaries recorded on mobile phones and further explored in telephone interviews. Audio diaries securely transmitted via 'Whatsapp' (university and hospice ethics approval granted). Results Thematic analysis (Braun and Clarke 2006)1 was used to identify that participants used a range of strategies/ approaches to manage their relationship with parents; in terms of their emotions (Purposeful positioning) and interactions (Balancing personability and professionalism). In addition, participants revealed other CH specific factors which helped them cope with their role (Coping with and counterbalancing emotional labour). Discussion Findings were indicative of CH nurses' using and building Emotional Intelligence (EI). Established EI theory was combined with findings to develop: ENRiCHn (Using EI to Navigate Relationships in Children's Hospices: a framework for nurses). Although CH specific, aspects of the framework could be adapted for other areas of nursing practice where long-term nurse-parent/client relationships exist. Conclusions The findings provided an insight into how experienced CH nurses used emotional intelligence to engage emotionally with parents whilst simultaneously managing the level of involvement and maintaining a sense of separation. Features of hospice work which positively contributed to counterbalancing the emotional demands of the role were also highlighted.
Brimble MJ
BMJ Supportive and 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/10.1136/spcare-2023-PCC.52" target="_blank" rel="noreferrer noopener">10.1136/spcare-2023-PCC.52</a>
Siblings and End-Of-Life Decision Making in the NICU
decision making; sibling; care behavior; child; clinical article; conference abstract; content analysis; critically ill patient; Decision Making; electronic medical record; female; human; infant; male; neonatal intensive care unit; perception; semi structured interview; wellbeing
Background: When making end-of-life decisions for a child in the neonatal intensive care unit (NICU), standard practice is to involve parents in shared decision-making so that the values of parents are considered and decisions are made in the interests of the child. In this decision-making process, it is not known whether parents are influenced by the needs of their other children. Method(s): A qualitative two-phase exploratory methodology was chosen to understand how considerations for other children in the family influence parents' decisions. The electronic medical records of children ( n = 20) previously admitted to the Royal Children's Hospital's NICU were analysed for relevant mentions of siblings. Then, families ( n = 3) participated in semi-structured interviews to understand considerations of siblings. Statements and interviews were analysed using inductive content analysis. Result(s): Parents articulate the considerate juggling act of balancing the day-to-day needs of multiple children during the NICU journey. With the wellbeing of siblings in mind, parents made a range of decisions with different degrees of medical impact in the NICU. For end-of-life decisions, parents differed in their perspectives about whether considerations of siblings should be taken into account. Moreover, clinicians were aware of the challenges of caring for multiple children and supported parents with these challenges. Conclusion(s): It is clinically and ethically significant that sibling considerations impact end-of-life decision-making. We suggest clinicians reflect on their own perception of how much siblings should be allowed to influence end-of-life decisions to protect critically ill babies from harm. More research is needed to better understand these influences.
Power J; Gillam L; Prentice TM
Journal of Paediatrics and Child Health
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/jpc.16357" target="_blank" rel="noreferrer noopener">10.1111/jpc.16357</a>
Impact of Palliative Care Integration on End-of-Life Outcomes in Pediatric Hematopoietic Cell Transplant
hematopoietic cell; palliative therapy; transplantation; anxiety; appetite; bleeding; bodily secretions; child; conference abstract; controlled study; coughing; data analysis; demographics; diarrhea; distress syndrome; do not resuscitate order; documentation; dyspnea; edema; fatigue; female; fever; hospice; human; human cell; intubation; irritability; lifespan; major clinical study; male; medical record review; nausea and vomiting; pain; Palliative Care; quality of life; retrospective study; surgery; survival; terminal care
Introduction: Pediatric hematopoietic cell transplant (HCT) confers a high risk of morbidity and mortality and palliative care (PC) integration in HCT may improve outcomes. PC services can aid in advanced care planning, symptom management, and wholistic support for patients and their families, especially at end-of-life, yet little empiric data exists regarding the impact of PC involvement in pediatric HCT. Objective(s): Compare deceased pediatric HCT patients with and without PC involvement to identify differences in end-of-life characteristics. Method(s): Retrospective medical record review was performed for all HCT patients at St. Jude Children's Research Hospital who died between March 2008 and October 2017 (N=160). Variables collected included: demographics, PC involvement, symptom and end-of-life characteristics. Data analysis included descriptive statistics and tests of significance. Result(s): Of 160 deceased HCT patients PC involvement was present in 115 (71.9%) compared to 45 (28.1%) with no PC. No significant differences in demographic characteristics were noted between the 2 groups. Longer survival duration from HCT to death was noted in patients who received PC whose mean death was 305.5 days after HCT (median 189, range 10-2,834) as compared to a mean of 228.8 days between HCT and death in the no PC group (median 129, range 13-1,444) (p=0.047). Significant differenced were noted in which patients with PC involvement were more likely to have a DNR order (PC n=76 74.5%, NPC n=16 48.5% p=.005), less likely to be intubated in the last 24 hours of life (PC n=36 34%, NPC n=21 60% p=.006), and more likely to have been enrolled in hospice (PC n=38 33%, NPC n=4 8.9% p=.002). Documentation of distressing symptoms in the last month of life was higher in the PC group with notable symptom burden in both groups. Most frequently documented symptoms overall were pain (95.3%), fatigue (83.2%), fever (80.0%), edema (78.0%), bleeding (66.9%), diarrhea (65.6%), poor appetite (65.3%), anxiety (63.4%), nausea/ vomiting (58.9%), dyspnea (58.5%), secretions (57.4%), irritability (48.0%), and cough (47.5%). Conclusion(s): PC integration in pediatric HCT likely results in improved end-of-life care by way of enhanced advanced care planning, decreased intubation and resuscitative events, and increased hospice enrollment. PC integration in HCT does not lead to shorter life spans and may improve quality of life via enhanced symptom recognition and management.Copyright © 2023 American Society for Transplantation and Cellular Therapy
Levine DR; Cuviello A; Baker JN
Transplantation and Cellular Therapy
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/10.1016/S2666-6367%2823%2900237-3" target="_blank" rel="noreferrer noopener">10.1016/S2666-6367%2823%2900237-3</a>
Early Integration of Pediatric Palliative Care in Pediatric Hematopoietic Stem Cell Transplant Patients
distress syndrome; hematopoietic stem cell; palliative therapy; transplantation; child; conference abstract; consultation; controlled study; evidence based practice center; female; Hematopoietic Stem Cells; human; human cell; learning; major clinical study; male; medical record review; morbidity; mortality; Palliative Care; retrospective study; risk assessment; satisfaction; staff training; Stem Cell Transplantation
Topic significance and study purpose/background/rationale: Patients undergoing hematopoietic stem cell transplant (HSCT) are at risk for significant morbidity and mortality and experience distressing psychological and physical symptoms. Access to palliative care services early in the treatment course can mitigate psychological suffering, address physical symptoms, and establish rapport with the palliative care team. There is no standardized practice for palliative care consultations for these patients. The aim of this evidence-based practice project was to determine if the early implementation of a palliative care trigger tool increases the number of palliative care consults in this population. Methods, intervention, and analysis: A pre-intervention survey was administered to assess staff understanding and satisfaction with palliative care services. A retrospective chart review was conducted to determine patients at highest risk for morbidity and mortality from HSCT. A paper trigger tool was developed to identify patients considered highest risk in order to place a palliative care consultation prior to or on admission for HSCT. Implementation included staff education via various medias. The trigger tool was implemented over a 6-month period on a 24 bed HSCT Unit. Findings and interpretation: The staff pre-survey demonstrated support for the project with 79% being very or extremely interested in learning more about palliative care. Additionally, 60% disagreed or strongly disagreed that palliative care services were introduced early enough. Based on a two and a half year retrospective chart review, 51 patients met criteria for early integration of palliative care services and 15 received consultations. To date, the trigger tool has been used on 14 patients and has resulted in early consultation in 11 patients. Discussion and implications: Based on the trigger tool, most patients admitted for HSCT qualify for early integration of palliative care services. The tool effectively identified patients for early integration of palliative care services. Providing early palliative care is an important priority of care for patients undergoing HSCT.Copyright © 2023 American Society for Transplantation and Cellular Therapy
Kent L; Williams M; Pinner LA; Callard E; Fisher J; Pyke-Grimm K
Transplantation and Cellular Therapy
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/10.1016/S2666-6367%2823%2900179-3" target="_blank" rel="noreferrer noopener">10.1016/S2666-6367%2823%2900179-3</a>
Patient-centred outcome measure design: the perspectives and preferences of children and young people with life-limiting or life-threatening conditions
outcome assessment; adolescent; child; clinical article; conference abstract; feasibility study; female; genetic transcription; human; interview; male; malignant neoplasm; nervous system; pain; preschool child; recall; self report; voice
Background: Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) face specific challenges when self-reporting health outcomes, including communication difficulties and sensitivities around subject matter. No ideal self-reported patientcentred outcome measure (PCOM) currently exists for this population. Practical aspects of design need to be considered in line with CYP's preferences and capabilities to ensure meaningful participation in measurement, and to enable child- and family-centred care. Aim(s): To identify preferences for PCOM response format, recall period, administration mode, and length, among CYP with LLLTC. Method(s): Semi-structured qualitative interviews with CYP aged 5-17 years with LLLTC. CYP were purposively sampled from nine UK sites. Verbatim transcripts were analysed in NVivo using Framework analysis with inductive and deductive coding. Result(s): 26 CYP with a range of LLLTC (primary diagnosis: 10 gastrointestinal, 6 cancer, 5 neurological, 3 congenital, 1 metabolic, 1 respiratory) were interviewed. Response format: many participants reported familiarity with numeric response scales, especially for pain. However, most preferred response formats with pictures, most often emojis. Children under 10 years old in particular preferred emojis, while preferences among older CYP were more variable. Recall period: Participants preferred a short recall, either because they cannot remember far back, or they do not want to think about past ill health. Most felt that they could report health-related outcomes from between the past day up to the past week. Older CYP tended to favour longer recall periods compared to younger children. Administration mode: whilst most participants preferred to complete measures electronically or had no preference, a small number had a strong preference for paper-based measures, suggesting PCOMs should be available in multiple formats. Length: ten or fewer questions were preferred. Conclusion(s): CYP with LLLTC interviewed are accustomed to answering questions about their own health and can communicate preferences to inform PCOM design. Generally, they prefer visually appealing response formats, short measures, and electronic administration. Importantly, respondent burden needs to be considered at the design stage, as demonstrated by preferences for a brief measure and short recall period. The results presented have practical implications for design and development of PCOMs for CYP with LLLTC, whose voices must be included early in measure development to ensure acceptability, feasibility, and enhance valid and reliable self-report.
Haroardottir D; Coombes L; Braybrook D; Scott H; Roach A; Bristowe K; Ellis-Smith C; Downing J; Bluebond-Langner M; Laddie J; Hills M; Ramsenthaler C; Fraser LK; Murtagh FEM; Harding R
Quality of Life Research
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/10.1007/s11136-023-03353-w" target="_blank" rel="noreferrer noopener">10.1007/s11136-023-03353-w</a>
Local Paediatric Death Data for Barnet 2015- 2021: Which Children are Potentially Eligible for Hospice Care?
Hospice Care; Awareness; Child; Child; child death; clinical article; conference abstract; data analysis; England; Female; Hospice Care; Hospice; hospital admission; hospital mortality; Human; information center; Male; medical history; Only Child; Palliative Therapy; patient referral; prevalence; Retrospective Study; social care; time of death
Background Estimating the local population needs for children's palliative care services can prove challenging. Data has shown that most children die in hospital and not all children with life-limiting conditions (LLC) are known to local hospices at their time of death (Williams & Horsley, 2015). A recent survey conducted by Noah's Ark of North London Paediatric teams, showed that 90% of those surveyed had looked after patients with LLC and not referred them on to their local hospice (Opstad, 2021). Epidemiological studies have sought to estimate the prevalence within local populations (Williams & Horsley, 2015) of children with LLC, looking at NHS digital data (Fraser, Gibson- Smith, Jarvis, et al., 2020. Palliat Med.) from hospital admissions (Health & Social Care Information Centre, 2015). These estimations, however, come with limitations. Aims 1. Identify the causes and locations of child deaths in the local population. 2. Determine which children would have potentially met criteria for hospice referral. Design Records of local death data were analysed, with specific reference to cause and location of death and past medical history which would have made them eligible for hospice care. Results Over the six-year period analysed there were an average of 26 deaths per year from all causes. Between 5 and 18 children were found to meet hospice referral criteria each year (an average of 10 per year). 139 of the 154 total deaths occurred in hospital (90%) from all causes, but 43 (28%) of those deaths were in children with LLC and were expected. Just 19 children (12%) had a planned death at home or in a hospice setting over the sixyear period analysed. Conclusions This data supports the hypothesis from epidemiological studies that there is unmet need within the local population. Some families may choose for their child to die in a hospital, and it is difficult to scrutinise this element of choice in retrospective data analysis. However, there is clearly need for greater awareness amongst paediatric teams and families of the services offered by local hospices.
Opstad H
BMJ Supportive and 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/10.1136/spcare-2022-HUNC.80" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.80</a>
Use of Mobile Cold Sheets in Paediatric Hospice Care
cold stress; Hospice Care; Australia; Child; child parent relation; Cold Temperature; conference abstract; cooling; emergency care; funeral home; Hospice Care; Hospice; Human; learning; Memory; nut; posthumous care; practice guideline; privacy; twins; unlicensed drug use
After death care is an essential service offered by paediatric hospices in the time between the death of a child and their funeral or care being transferred to a funeral home. This service allows families time together, privacy and memory making opportunities (Oldham, 2021. ehospice. [Int. Child. ed.], Sept.29) when this may have been limited in the acute care setting or families may have been focused on acute care and interventional management. Resources that are required include family support and clinical teams with experience in after death management, and resources to promote cooling. The length of admission provided to families varies across paediatric hospices and depends on a balance of family preferences, policies of the facility based on experience and condition of the body. As such, any resources that can promote optimal cooling facilitate more time and a better experience for families. Hummingbird House Hospice (Brisbane, Australia) and Acorns (West Midlands, UK) are experienced in after death care. Hummingbird House uses innovative mobile cold sheets to best support after death care, now being adopted as practice in Acorns Hospices with collaboration between services. Mobile cooling sheets are inexpensive, simple to use and do not require coolant to be pumped through like 'cuddle cots' or other cooling mat devices. Advantages include decreased reliance on coolant-based technology (more vulnerable to malfunction), ability to facilitate twins (or other multiple births) being laid together, and increased portability to experience 'normal' parenting such as having time outside in a pram. A case study highlights advantages from a family perspective. The organisational barriers to implementing this new practice have included: justifying additional resources to those already available; need for educational resources and organisational guidelines; lack of local experience; concern about unlicensed use of products and correct storage. We hope to share our experiences and learnings with this new technology to increase the options in care available to bereaved families across the UK.
Mott C; Oldham K
BMJ Supportive and 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/10.1136/spcare-2022-HUNC.207" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.207</a>
Learning Disability Nurses in Palliative Care - A Narrative on Diversifying the Workforce and the Caseload
learning disorder; narrative; nurse; Palliative Therapy; workforce; Adult; Adulthood; Attention; Autism; Child; cognitive defect; cohort analysis; conference abstract; distress syndrome; employment; epilepsy; Female; geriatric disorder; Hospice; Human; learning; Learning Disorders; malignant cardiac tumor; neurodisability; Palliative Care; skill; Terminal Care; treatment failure
There have been multiple recent reports regarding the inequalities in palliative and end of life care for people with learning disabilities; but little if any attention paid to the role of learning disability nurses working in palliative care. Children's hospices often have a well-established cohort of learning disability nurses in their employment. This has not currently translated into adult palliative care; increasingly though, children with complex neuro-disabilities and life-limiting conditions are living into adulthood with good care, and need specialist symptom management and end of life care through transition into adult services. Adults with learning disabilities and other complex health conditions are also now living into later life and are more likely to develop age related illnesses such as cancers, heart failure etc., rather than dying from an acute episode related to epilepsy, for example. Learning disability nurses bring a specialist skill set in supporting people with a known LD diagnosis, but also those with acquired cognitive impairment, those in mental distress, people with communication difficulties and autistic people. A Learning Disability Nurse may recognise undiagnosed learning or support needs in patients, and be able to provide strategies to ameliorate those needs. The author would like to present a narrative on her experiences of moving into palliative care and how Learning Disability Nurses can provide a new perspective and skill set within the specialist palliative care team.
Marsden S
BMJ Supportive and 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/10.1136/spcare-2022-HUNC.102" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.102</a>
Teetering On a Cliff Edge: Transitioning Between Paediatric and Adult Hospice Services
Hospice Care; Adult; Child; clinical article; conference abstract; controlled study; conversation; Female; Hospice; Human; human experiment; Male; Pediatric; psychological well-being; Scotland; social care; trust; Wales; wellbeing; young adult
Background The transition process from paediatric to adult hospice care is uniquely challenging for young adults living with non-malignant life-limiting conditions as they are often declining in health with increasing dependence on their families for all aspects of care. Many young adults and their families feel that there is nothing for them on leaving paediatric services and that they teeter on a 'cliff edge' with no hope for the future. Without a robust process of transition, the young adults' physical and mental wellbeing may be negatively impacted upon and yet the transition of young adults with complex conditions is not currently a health and social care priority. A pathway Identifying that there was a need to prioritise transition, Children's Hospices Across Scotland (CHAS) and The Prince & Princess of Wales Hospice (PPWH) worked collaboratively to pilot a Transition Pathway. This involved the development of a categorisation template for the transition caseload with subsequent identification of 12 young adults aged between 19 and 20, all of whom have a non-malignant diagnosis. Over an 18-month period, 4 young adults have fully moved to the adult hospice, 4 continue to remain on both caseloads, 3 have been discharged directly from CHAS with no adult hospice input, and 1 has died. Conclusions Focus groups for the young adults/families to share their experience of the pilot are planned to enable a full evaluation. However, ahead of these conversations it is recognised that collaborative working is essential to ensure a robust joint approach to transition, supported by: information sharing regarding the differences in services offered (and thereby demystifying what an adult hospice is); open conversation to develop a foundation of trust between the young adult/families and the health care professionals; and the development of an individualised 'at their pace' transition plan to support the health and wellbeing of the young adult and their families moving forward.
Laidlaw S; Wylie F; O'Connor J; Rahman F
BMJ Supportive and 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/10.1136/spcare-2022-HUNC.63" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.63</a>
Transforming Care for Young Adults with Complex and Life-Limiting Conditions
Adult; Child; conference abstract; Human; immersion; learning; logic; peer group; quantitative analysis; young adult
Background More young people with complex life-limiting conditions are living into adulthood, generating greater demand for appropriate care (Fraser, Gibson-Smith, Jarvis, et al., 2021. Palliat Med. 35:1641). We implemented Project ECHO (Extension of Community Healthcare Outcomes) to improve young people's palliative care, Sept 2019 - Dec 2022. Aim(s) Evaluate Project ECHO and associated National Transition Community of Practice (CoP) as a mechanism to transform palliative care for young people. Methods Following expressions of interest, three ECHO Hubs were trained and a CoP established (year 1). Our appointed Evaluation Partner is analysing qualitative and quantitative evidence (obtained throughout) applying a logic model. Results Work in progress; findings demonstrate enhanced knowledge, confidence and peer support. Key metrics: * ECHO Immersion Training x3 Hubs (Dec 2019). * 10 ECHO sessions per year x3. * Quarterly Transition (Professional) meetings: 'Really helpful, a wealth of experience and enthusiasm.' * 141 CoP subscribers (March 2022). Conclusions Children and young people's needs are diverse, complex and require a higher profile (NHS. The NHS long term plan. 2019). Initial findings reveal a positive contribution to learning and improved outcomes reflecting NICE Guidance (National Institute for Health and Care Excellence. [NG43], 2017; National Institute for Health and Care Excellence [NG213], 2022; National Institute for Health and Care Excellence. [NG61], 2019). Our Transition project addresses gaps in knowledge across the UK.
James C; Horsley A; Shouls S
BMJ Supportive and 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/10.1136/spcare-2022-HUNC.65" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.65</a>
“It’s brilliant! It’s working! It’s needed!” A Hospice Short Break Innovation for Young Adults
Hospice; Adult; Child; clinical article; conference abstract; drug withdrawal; Female; health care delivery; Hospice; Human; human experiment; interview; learning; Male; outcome assessment; Palliative Therapy; positive feedback; questionnaire; sibling; trust; young adult
Background More young adults with life-limiting conditions are surviving into adulthood needing adult palliative care (Gibson- Smith, Jarvis, Norman et al., 2021). The evidence on appropriate service models is sparse (Clark & Fasciano, 2015. Am J Hosp Palliat Med. 31: 101). Adult hospices report lack of competence and confidence in young adult complex care needs (Knighting, Bray, Downing, et al., 2018. J Adv Nurs. May 6). Loss of children's hospice short break provision after transition has been described by families as like 'falling off a cliff edge' (Knighting, Pilkington, Noyes, et al., 2021. Health Serv Deliv Res. 9, 6). There is a lack of equivalent provision in adult services (Together for Short Lives, 2015). To address unmet need, a pilot residential short break service in an adult hospice was co-produced and evaluated with families to determine future provision. Aims With the aim of facilitating future service optimisation the service evaluation had the following objectives: a) to identify the outcomes and benefits; b) to enable learning; c) to explore staff experiences, training and support needs; d) to scope the financial and service delivery implications. Methods A service evaluation of the pilot (delivered May 2019-March 2020,) including process data and feedback gathered using semi-structured questions via questionnaires, interviews and focus groups with young adults, siblings, parent/ guardians and staff. Results Sixty short breaks delivered, accessed by 15 young adults >18 years and their families. Evaluation participants: 3 young adults, 6 siblings, 10 parent/guardians, 11 staff. Highly positive feedback with no withdrawals from the pilot. Triangulated themes: a) social and developmental benefits for young adults; b) respite benefits for families; c) achieving parents' trust, d) ability of adult hospice to meet complex care needs; e) positive staff experiences; f) identified areas for service improvement. Conclusion Persuasive evidence from the evaluation resulted in the service being commissioned. The report offers recommendations for adult hospices aspiring to develop young adult palliative care services. How innovative or of interest is the abstract? To our knowledge this is the first young adult short break service in a UK adult hospice.
Finlinson H; Spathis A
BMJ Supportive and 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/10.1136/spcare-2022-HUNC.5" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.5</a>
Young People and Transition at a Hospice for Adults
Hospice; Adult; Child; conference abstract; Hospice; Human; relative; skill; voice; worker; young adult
Background The hospice recognised a gap in services for patients, relatives and carers aged 18-30 and that services should be more age appropriate (Smith, Mooney, Cable, & Taylor (eds.). Teenage Cancer Trust, 2016). In addition, young people are living longer with life-limiting conditions (Fraser, Gibson-Smith, Jarvis, et al., 2020.) so transition to adult hospice services has become more necessary, which can be a daunting process (Beresford, 2013). Aim(s) Provide a 3-year National Lottery funded Young Person & Transition Key Worker to support patients, relatives and carers aged 18-30 accessing adult hospice services. The key worker will ensure that the needs of young people are understood, staff have the skills and knowledge to support them effectively and that transition to the adult hospice is a smooth and reassuring process. Methods The Young Person & Transition Key Worker offers support by: * Giving young people a voice (National Institute for Health and Care Excellence. [NG43], 2016); using their feedback to shape services. * Providing age appropriate services and adapting existing ones, where possible, to meet the individual needs of the young person. * Offering support to relatives and carers aged 18-30. * Promoting the service to ensure that local agencies are aware of the support available to young people and to allow collaborative work. * Working with local children's services to create a better transition pathway. Anticipated results Young people and their families will feel confident to choose hospice services. Services at the hospice will be age appropriate. Transition from children to adult services will be less daunting. Innovation Although it is understood that the needs of young people differ from the needs of the population usually supported in adult hospices, there are few roles that are specifically designed to support people 18-30 in this setting. A key worker to meet the individual needs of young people is not only unusual but also invaluable in ensuring young people have the best possible experience (Noyes, Pritchard, Rees, et al., 2014).
Finch F
BMJ Supportive and 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/10.1136/spcare-2022-HUNC.62" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.62</a>
Taking Memory Making to the Next Level with the Use of Resin
Memory; resin; Artifact; Bereavement; Bereavement support; Child; conference abstract; controlled study; foot; grief; hair; Hospice; Human; Memory; nut; Palliative Therapy; photography; sibling; worker
Background Memory making is the process of creating mementos of a child with a life-limiting condition, who may be at or near end of life, providing a tangible and visual connection to the child who has died. Acorns memory making work already included sensitive and specialist use of artwork, hand and footprints, hand casting and photographs of children post death. Aim(s) 1. To share how effective Resin can be as a memory making tool, capturing very personal images and mementoes for parents and carers pre- and post- the loss of their child. 2. To understand the positive impact effective memory making has on families, pre- and post- bereavement. Methods * June. The use of Resin in memory making was identified as an area of interest by a Clinical Support Worker leading on Play and Activity. * July - Sept. Working group established bringing together key palliative care professionals across the hospice who were delivering memory making and keen to develop the service further. * Sept. - Dec. Introduced the use of Resin into memory making work. Results 1. After seeing the results of the Resin art, parents are increasingly requesting ongoing memory making through the last few days of their children's lives; using Resin as a tool supports this very specialised area of work we do across hospices. 2. Parents experienced an overwhelmingly positive impact from memory making, displaying the Resin-based artefacts created in pride of place in their homes. 3. Parent and siblings referring to the impact the memory making process and ongoing value of the Resin created items in post bereavement support sessions. Conclusions Our journey with using Resin has been a progressive one and following feedback from parents we know it has positively impacted on their bereavement experience. The Resin work has been led by parent and sibling engagement who find the creative work we do with them during the end of life phase and after their loss supports them through their grief. Resin is so adaptable therefore the memory- making teams can capture pictures of children, fingerprints, hand and foot prints and locks of hair in ornaments, necklaces, key rings. We hope that by sharing our work in this area other memory making teams across the palliative care sector can consider how they too may like to add this as another optional tool for their memory making work.
Aspinall E; Kelly M
BMJ Supportive and 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/10.1136/spcare-2022-HUNC.206" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.206</a>
Bereaved Parents' Perspective on Communication of Transition to Palliative Care in Pediatric Oncology - Hungarian Experience
Bereavement; Child; childhood cancer; clinical article; communication protocol; conference abstract; consultation; Female; genetic transcription; Human; Hungary; Male; nonverbal communication; Palliative Therapy; semi structured interview; Terminal Care
Background and Aims: Transition to palliative care (PC) is a critical aspect of pediatric oncology requiring a high level of communication skills from doctors, which could be best judged by parents of children died in cancer. Our aim was to explore parents' perspectives regarding the timing of the consultation on implementing PC, as well as facets of verbal and non-verbal communication in Hungary. Method(s): Semi-structured interviews were conducted with parents who had lost their child to cancer within the past 1-5 years. Interview transcripts (n=23) were scrutinized with Interpretative Phenomenological Analysis. Result(s): Parents frequently associated palliation with end-of-life care and clearly delimited the transition to PC after curative treatments had been exhausted. Parents were ambivalent regarding using the word "death" during this consultation and often did not receive information on what to expect (e.g., regarding symptoms) and who to turn to for further information or support (e.g., concerning bereavement). Conclusion(s): Although significant progress could be observed in the organization of pediatric palliative care in Hungary, there is still no widely accepted communication method for communication of transition to sole PC. There is a need for a culturally-sensitive approach to refining recommendations on word-use and communication protocol in pediatric PC also in Hungary.
Foldesi E; Zorgo S; Nyiro J; Hegedus K; Hauser P
Pediatric Blood and Cancer
2022
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<a href="http://doi.org/https://dx.doi.org/10.1002/pbc.29952" target="_blank" rel="noreferrer noopener">https://dx.doi.org/10.1002/pbc.29952</a>
Dying child and nurses' mourning
Mourning; Nurse; Child; Death; Nurse; Nurse Care; Death; Child; Anger; Care; Child; Conference Abstract; Curriculum; Demography; Dying; Education; Guilt; Hospitalized Child; Human; Pediatric Hospital; Pediatric Nurse; Questionnaire; Sadness; Theoretical Study
Introduction: One of the most complex and emotional aspects of nursing is the interaction between the nurse and the dying child. The attitudes of nurses towards death, affect the quality of care. Objective(s): To investigate pediatric nurses' attitudes towards death. Method(s): Methodology: 170 nurses, working in pediatric hospital departments completed a questionnaire which included sociodemographic characteristics and information related to their previous training and clinical experience regarding death issues in general and dying children's care in particular. Result(s): 68.6% reported that the death of a child affects them very much, while 44.7% of the participants didn't feel well prepared to manage death issues. Pediatric nurses were greatly affected by children's death, expressing mainly feelings of sadness (44%), compassion (22%), guilt (22%) and anger (22%). 73% of the sample wished the hospitalized child, died when they were not present. 53.5% had been trained regarding the care of dying patients and the management of death and mourning as part of their curriculum and 21.2% had attended a relative seminar / lecture. The importance of proper and adequate education becomes particularly apparent considering that the majority of our sample either did not feel sufficiently prepared in order to deal with death and mourning, even though more than 70% of our participants had been relatively educated. Conclusion(s): The incorporation of the notions of death and care at end of life in the theoretical and practical fields of nursing will improve the quality of services offered at the end of life for patients and their families.
Zartaloudi A; Lekas C; Koutelekos I; Evangelou E; Kyritsi E
European Psychiatry
2021
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<a href="http://doi.org/10.1192/j.eurpsy.2021.1075" target="_blank" rel="noreferrer noopener">10.1192/j.eurpsy.2021.1075</a>
At the End of Life: Pediatric Palliative Care Can Make a Difference in Caring for the Child and Family
agitation; anxiety; cancer patient; care behavior; child; conference abstract; controlled study; demography; dyspnea; fear; female; hospital mortality; human; intensive care unit; irritability; leukemia; major clinical study; male; middle income country; pain; palliative therapy; pediatric patient; quasi experimental study; retrospective study; school child; seizure; skill; social needs; terminal care; ward
Background and Aims: WHO defines pediatric palliative care as the active total care of the child's body, mind and spirit, which also involves giving support to the family, the aim of this study is to describe the endof-life care of children with cancer during the end-of-life period who receive general palliative care or pediatric palliative care in low- and middle-income countries. Method(s): We conducted a retrospective quasi-experimental study between January 2013 and December 2020 with deceased pediatric cancer patients. Demographic and clinical variables were collected to describe end-of-life care received before (2013-2017) by general palliative care team and after (2018-2020) the creation of a pediatric palliative care team Results: A total of 180 pediatric patients were evaluated at the end of life (100 between 2013-2017 and 80 between 2018-2020). The median age was 11 years, regardless of sex. Half of the patients had a diagnosis of leukemia (49.8%), 52.7% receive palliative treatment for their oncological condition. Regarding symptoms, 72 hours before death, pain treatment was documented for 52.2% of the patients. Other signs and symptoms, such as dyspnea, seizures, agitation, and irritability, were present, with no differences between groups; however, it was noted that during PPC interventions, there was a significant reduction in anxiety or fear of end of life, we observed a greater number of interventions by the psychosocial professionals and also there was an increase in the number of patients who died in the hospital ward and a decrease in the number of patients who died in the intensive care unit. Conclusion(s): Pediatric palliative care requires special knowledge and skills, the provision of PPC for children with cancer allows patients and their families to receive support that alleviates the physical, emotional and social needs that arise from a life-limiting illness and finally receive high-quality end-of-life care.
Cuervo M; Garcia X; Molina K; Claros A; Bolanos J; Alvarez T; Cleves D
Pediatric Blood and Cancer
2022
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<a href="http://doi.org/10.1002/pbc.29952" target="_blank" rel="noreferrer noopener">10.1002/pbc.29952</a>
Cultivating Gratitude in Bereaved Families: Description of the Impact of the Bereavement Workshop on Families of Deceased Patients in the Pediatric Palliative Care Program
active listening; bereavement; butterfly; child; conference abstract; coping behavior; genetic transcription; grief; group therapy; human; learning; music therapy; nonhuman; palliative therapy; perception; qualitative research; quantitative analysis; ritual; writing
Background and Aims: Grief in parents has been described as a very intense long-lasting experience, characterized by deep sadness, and social isolation, therefore, the recommendation of scientific societies in pediatrics is to provide bereavement care to parents and relatives of deceased children who have previously been cared for by health professionals. In this study, a bereavement workshop for parents is proposed as an intervention strategy, providing accompaniment to the families of deceased patients who received pediatric palliative care (PPC). Method(s): We conducted a quantitative and qualitative study in a focus group of parents of deceased children who participated in a bereavement workshop. The intervention consisted of a bereavement workshop, guided by the multidisciplinary PPC team, in which 4 activities were developed: group psychotherapy, music therapy, gratitude activity, symbolic ritual of delivery of butterfly. The gratitude activity consisted of motivating the families to express their gratitude by writing on cards with phrases that encourage reflection: during this process I am grateful for., I thank my child or family member for. . . , I thank the pediatric palliative care program for. . .; the cards were transcribed into a database constructed for this study and analyzed by 4 evaluators, thematic categories were assigned to each reflective sentence. Result(s): 60 families received the personalized letter of condolences with invitation to the workshop, 23 families attended the workshop. From the gratitude activity, families made 49 thank you cards, the following categories were highlighted: Communication, Hope, compassion, acceptance, humanization, learning, gratitude, active listening, coping strategies, regards, faith and humanization Conclusion(s): Strategies that favor adequate emotional management of the grieving process should be promoted. This study reflects the perceptions of parents attending a bereavement workshop. It highlights the gratitude, feelings and reflections of the family members during the health process and the death of the child while receiving accompaniment by a pediatric palliative care team.
Cuervo M; Devia A; Pereira L; Alvarez T; Molina K; Bolanos J; Correa I; Garcia X
Pediatric Blood and Cancer
2022
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<a href="http://doi.org/10.1002/pbc.299522" target="_blank" rel="noreferrer noopener">10.1002/pbc.299522</a>
Development of a Global Palliative Care Program
World Health Organization; capacity building; child; conference abstract; development; education; female; hospice; human; human experiment; leadership; male; needs assessment; palliative therapy
Background and Aims: Disparities in access to pediatric palliative care (PPC) and pain management remain an under-addressed global health issue, especially in low- and middle-income countries (LMICs). Although integration of palliative care (PC) is currently considered a quality standard in children with cancer, very few hospitals, countries and regions have achieved this standard. The St Jude Global Palliative Care Program was created to define the current state of PC in underserved communities worldwide and drive collaborative interventions with our global partners to relieve the suffering of patients and families facing the challenges of pediatric cancer. We describe the program's developmental processes and the challenges and success. Method(s): The St Jude Global Palliative Care program was established in 2018 under the leadership of an interdisciplinary team of experts in PPC. It has been developed through 4 fundamental pillars: Research, Education, Capacity Building, and Advocacy. Activities in these areas have been developed in each of the WHO regions. Result(s): From December 2018 to March 2022, the St Jude Global Palliative Care Transversal program has developed 16 educational projects, 7 advocacy activities, 4 projects in capacity building and 4 large research studies. These activities have been conducted in 99 countries from 5 continents. Collaborative work with World Health Organization (WHO), Pan American Health Organization (PAHO), International Children's Palliative Care Network (ICPCN), and the Worldwide Hospice Palliative Care Alliance (WHPCA) has been essential for developing activities. The program has developed a provider network of 1,280 members from every continent of the world. Conclusion(s): The development of regional activities based on a needs assessment is essential to promote the development and prioritization of PPC according to their locoregional needs and resources. We are currently in the process of developing a global PPC strategic plan that we will share at the SIOP meeting.
McNeil M; Garcia X; Salek M; Baker J
Pediatric Blood and Cancer
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/10.1002/pbc.29952" target="_blank" rel="noreferrer noopener">10.1002/pbc.29952</a>
The Dutch Multidisciplinary Clinical Practice Guideline for Pediatric Palliative Care
Netherlands; advance care planning; bereavement support; child; clinical practice; conference abstract; controlled study; female; human; male; palliative therapy; practice guideline; randomized controlled trial (topic); shared decision making; systematic review
Background and Aims: Pediatric palliative care is concerned with relief of suffering of all children with a life threatening disease and their families in all domains (physical, psychological, social and spiritual). This includes pediatric oncology patients. In 2013, the first Dutch multidisciplinary clinical practice guideline for pediatric palliative care was developed, providing recommendations on relief of symptoms, decision-making and organization of care. Evaluation of the guideline revealed a need for revision of the recommendations and inclusion of new recommendations on E-Poster Topics such as psychosocial and bereavement care, advance care planning and shared decision-making. The aim of this research is to improve provision of pediatric palliative care in the Netherlands by developing an updated version of the Dutch Pediatric Palliative Care guideline. Method(s): A multidisciplinary guideline panel reviewed literature on pediatric palliative care by systematic literature searches. The GRADE methodology was used to grade the evidence and to formulate recommendations. Recommendations were formulated and refined based on the evidence, clinical expertise, and patient values. For those E-Poster Topics where no evidence was available, recommendations were based on other guidelines, clinical expertise and patient values. Result(s): The updated systematic literature search identified 14 randomized controlled trials and 15 systematic reviews that prompted refinement of recommendations. For 27 out of 42 formulated clinical questions, no evidence was found. This revealed major gaps in knowledge on pediatric palliative care. Based on evidence (if available), clinical expertise and patient values, more than 100 recommendations on various E-Poster Topics in pediatric palliative care were generated. Conclusion(s): The updated guideline uses existing evidence and national expertise to develop transparent and easy-to-use recommendations to facilitate provision of high quality pediatric palliative care. The guideline promotes interdisciplinary collaboration and opens opportunities for international research into the identified knowledge gaps to further improve pediatric palliative care.
Van Teunenbroek K; Mulder R; Kremer L; Borggreve B; Verhagen AAE; Michiels E
Pediatric Blood and Cancer
2022
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<a href="http://doi.org/10.1002/pbc.29952" target="_blank" rel="noreferrer noopener">10.1002/pbc.29952</a>
Challenges and Incentives for Integrating Person-Centred Outcome Measures Into Routine Paediatric Palliative Care: Health, Social Care and Commissioner Perspectives
Child; Palliative therapy; Conference abstract; Semi-structured interview; Outcome assessment; Care behavior; Genetic transcription; Social care
Background/aims: To successfully integrate a newly developed measure into clinical practice, the challenges and incentives for implementation must be understood, and these are specific to each measure. Previous research has focused on disease-specific measures, or the use of outcome measures in adult palliative care. Evidence is needed to ensure successful integration of new person-centred outcome measures (PCOMs) in the paediatric palliative care context.
Scott H; Coombes L; Braybrook D; Roach A; Harardottir D; Bristowe K; Ellis-Smith C; Chambers L; Bluebond-Langner M; Farsides B; Murtagh F; Harding R
Palliative Medicine
2022
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<a href="http://doi.org/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">10.1177/02692163221093145</a>
Enabling Children and Young People to Take Patient and Public Involvement Roles in Paediatric Palliative Care Research
Child; Adolescent; Female; Male; Clinical; Palliative therapy; Conference abstract; Outcome assessment
Background/aims: Patient and public involvement (PPI) is essential to design and deliver meaningful research, but evidence on how to involve children and young people (CYP) in palliative care studies is limited. We aim to develop strategies to engage CYP PPI in paediatric palliative care (PPC) research.
Coombes L; Roach A; Leyden D; Scott H; Braybrook D; Harardottir D; Ellis-Smith C; Bristowe K; Harding R
Palliative Medicine
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/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">10.1177/02692163221093145</a>
From Pediatric to Adult Palliative Care Service: The Continuity of Care
Child; Adolescent; Adult; Young adult; Conference abstract; Psychologist; Social worker
Background/aims: Define a gradual transition from pediatric to adult palliative care able to support adolescent patients (pts) with chronic and progressive diseases and their family.
Ronchi L; Paone G; Mazzoni E; Donati CM; Mengoli F; Amarri S; Valenti D
Palliative Medicine
2022
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<a href="http://doi.org/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">10.1177/02692163221093145</a>
The DIGNITAL Study
Child; Adult; Clinical trial; Young adult; Conference abstract; Consultation care
Background: Dignity Therapy (DT) is a validated psycho-therapeutic intervention designed to influence a sense of meaning and purpose for individuals and their families. DT is well received by patients and family members, with research identifying improvements in measures of wellbeing and overall quality of life. Few studies include young adults (YA) with life-limiting conditions (LLC). A focused review and consultation work suggests a need to develop and evaluate a digital DT based intervention for YA/LLC.
Rodriguez A; Smith J; Tatterton M; McSherry W; Kellehear A; Yaziji N; Villa-Uriol MC; LanFranchi V; Watts L
Palliative Medicine
2022
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<a href="http://doi.org/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">10.1177/02692163221093145</a>
The Impact of COVID-19 on Palliative Care for Children Within the UK
Child; Palliative care; United Kingdom; COVID-19; Workload; Vulnerability; Conference abstract; Controlled study; Semi-structured interview
Background/aims: Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) represent a group with complex care needs that are met by multiple services and thus may be subject to particular vulnerabilities.
Scott H; Coombes L; Braybrook D; Roach A; Harardottir D; Bristowe K; Ellis-Smith C; Bluebond-Langner M; Farsides B; Murtagh F; Fraser L; Harding R
Palliative Medicine
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/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">10.1177/02692163221093145</a>
The Use of Concurrent Home Hospice for Pediatric Heart Failure Patients Awaiting Heart Transplant on Milrinone and/or Ventricular Assist Device
78415-72-2 (milrinone); body weight; child; clergy; conference abstract; controlled study; dietitian; emergency ward; feeding; follow up; heart failure; heart graft; home visit; hospice; hospital admission; hospital discharge; hospital readmission; human; inotropism; milrinone; money; mortality; outpatient; palliative therapy; satisfaction; social worker; travel
Purpose: Pediatric patients (pt) awaiting heart transplantation (HTX) are among the most fragile patients, even more so when on continuous milrinone infusion or ventricular assist device (VAD). These pt are often in the hospital for very long periods of time rather than at home where there is improved quality of life and less exposure to hospital acquired infections. In our state pt < than 21 years of age are able to receive concurrent care home hospice (HH) and still remain listed for HTX. We hypothesize that the continued utilization of HH will decrease the frequency of clinic visits, emergency department (ED) use and hospital admissions.
Burnette A L; Henderson H T; Adams V L; Savage A J
Journal of Heart and Lung Transplantation
2020
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<a href="http://doi.org/10.1016/j.healun.2020.01.072" target="_blank" rel="noreferrer noopener">10.1016/j.healun.2020.01.072</a>
Caregiver-reported impact on quality of life and disease burden in patients diagnosed with metachromatic leukodystrophy: Results of an online survey and a qualitative interview
adolescent; adult; biomedical technology assessment; bone marrow transplantation; Caregiver; child; clinical article; conference abstract; controlled study; disease burden; enzyme replacement; European Quality of Life 5 Dimensions questionnaire; female; follow up; France; Germany; human; human tissue; infant; institutional review; interview; investment; juvenile; male; metachromatic leukodystrophy; multicenter study; palliative therapy; patient advocacy; patient care; preliminary data; quality of life; recall; sample size; wellbeing
Metachromatic leukodystrophy (MLD) is a rare autosomal recessive lysosomal disorder caused by a deficiency of the enzyme arylsulfatase A (ARSA). Symptoms include motor decline, developmental regression, decreased intellectual capabilities, and behavioural/psychiatric abnormalities. Until now, little data exists on the burden of illness of MLD for patients and their caregivers. This multinational study aims to quantify caregiver-reported impacts across several key domains including symptoms, treatment burden, time investment, social & emotional well-being, and professional and financial impact. Data were collected using a 45 min web survey and follow-up interview. The survey incorporated the PedsQLTM, a well-validated QoL measure for adolescents and children, and other questions specifically designed to measure the resource use relevant for MLD families based on a majority recall period of 4 weeks. The EQ-5D was also administered to capture the impact of MLD on caregivers (health disutilities). Extensive validation of the survey was conducted through feedback from clinical experts (US and France), and MLD patient advocacy groups (US and UK). This study was approved by an independent Institutional Review Board. Respondents were recruited from the US, UK, France, and Germany, representing a mix of families based on onset types (late infantile, juvenile, adult) and treatment received (supportive/palliative care, bone marrow transplant, enzyme replacement therapy). Due to the rarity of the disease, this study has no upper limit on sample size and is actively recruiting to December 2019 with a sample of >=30 respondents. Preliminary results based on current available data indicate that there is significant burden of MLD on patients and their caregivers, with some degree of variability depending on onset type. This multinational study enhances our understanding of the burden of disease of MLD, which ultimately should improve patient care and assist in the health technology assessment (HTA) of interventions for MLD.
Pang F; Shapovalov Y; Howie K; Wilds A; Calcagni C; Walz M
Molecular Genetics and Metabolism
2020
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<a href="http://doi.org/10.1016/j.ymgme.2019.11.329" target="_blank" rel="noreferrer noopener">10.1016/j.ymgme.2019.11.329</a>