Palliative Care Network Research Articles

Status exploration and analysis of regional hospice and palliative care networks in Germany: A protocol for a mixed-methods study.

Multi-professional cooperation between healthcare providers is a key quality criterion of hospice and palliative care. While hospice and palliative care networks can support cooperation on a local level, opportunities for wider cooperation through the establishment and development of regional hospice and palliative care networks in Germany have not yet been explored systematically. The HOPAN study aims at: (1) identifying regional hospice and palliative care networks in Germany, (2) analysing these networks using an adapted quality assessment tool, and (3) proposing setting-sensitive recommendations for network development and exploring the benefits of these recommendations. HOPAN is a prospective, observational, mixed-methods study comprising three work packages (WPs). In WP1, the stock of regional hospice and palliative care networks in Germany will be identified via database, literature, and internet research. In WP2a, focus groups will be conducted to adapt an existing maturity model for healthcare networks to regional hospice and palliative care networks. In WP2b, a questionnaire will be sent to each identified regional hospice and palliative care network to gain insight into their structure and status of development. In WP2c, group discussions will be conducted to develop setting-sensitive recommendations for these networks. Finally, in WP3, these recommendations will be sent to all participating hospice and palliative care networks, and the benefits of the recommendations will be evaluated via a questionnaire. Empirically developed setting-sensitive recommendations should enable the systematic establishment and management of regional hospice and palliative care networks in Germany, considering the specific needs and potential of each network. The study findings are expected to improve the overall development of hospice and palliative care services. The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00030629; date of registration: 02 November 2022). The study is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.

Expert Perspectives on the Additional Benefit of Day Hospices and Palliative Day Care Clinics in Germany: A Qualitative Approach.

Background: In Germany, hospice and palliative care is well covered through inpatient, outpatient, and home-based care services. It is unknown if, and to what extent, there is a need for additional day care services to meet the specific needs of patients and caregivers. Methods: Two day hospices and two palliative day care clinics were selected. In the first step, two managers from each facility (n = 8) were interviewed by telephone, using a semi-structured interview guide. In the second step, four focus groups were conducted, each with three to seven representatives of hospice and palliative care from the facilities' hospice and palliative care networks. Interviews and focus groups were audio recorded, transcribed verbatim and analyzed using qualitative content analysis. Results: The interviewed experts perceived day care services as providing additional patient and caregiver benefits. Specifically, the services were perceived to meet patient needs for social interaction and bundled treatments, especially for patients who did not fit into inpatient settings (due to, e.g., their young age or a lack of desire for inpatient admission). The services were also perceived to meet caregiver needs for support, providing short-term relief for the home care situation. Conclusions: The results suggest that inpatient, outpatient, and home-based hospice and palliative care services do not meet the palliative care needs of all patients. Although the population that is most likely to benefit from day care services is assumed to be relatively small, such services may meet the needs of certain patient groups more effectively than other forms of care.

Impact of COVID-19 on delivery of oncology services in Northern Tanzania: a cross-sectional study of community health workers and patients undergoing cancer treatment at the Kilimanjaro Christian Medical Centre

ObjectiveTo ascertain how the COVID-19 pandemic was perceived by oncology patients and community health workers (CHWs) and whether this contributed to disruptions in cancer care.DesignCross-sectional study using (1) structured telephone...

Assessment Tools for Dyspnea and Respiratory Distress at the End of Life #453.

Journal of Palliative MedicineVol. 26, No. 4 Fast Facts and ConceptsAssessment Tools for Dyspnea and Respiratory Distress at the End of Life #453Mary Casey Murphy and Jacquelyn SimonisMary Casey MurphyAddress correspondence to: Mary Casey Murphy, MD, Huntsman Cancer Institute, University of Utah Health, 50 North Medical Drive, Salt Lake City, UT 84132, USA E-mail Address: mary.murphy@hci.utah.eduFast Facts and Concepts are edited by Sean Marks, MD (Medical College of Wisconsin), and Associate Editor Drew A. Rosielle, MD (University of Minnesota Medical School), with the generous support of a volunteer peer-review editorial board, and are made available online by the Palliative Care Network of Wisconsin (PCNOW); the authors of each individual Fast Fact are solely responsible for that Fast Fact's content. The full set of Fast Facts is available at PCNOW with contact information, and how to reference Fast Facts.Search for more papers by this author and Jacquelyn SimonisFast Facts and Concepts are edited by Sean Marks, MD (Medical College of Wisconsin), and Associate Editor Drew A. Rosielle, MD (University of Minnesota Medical School), with the generous support of a volunteer peer-review editorial board, and are made available online by the Palliative Care Network of Wisconsin (PCNOW); the authors of each individual Fast Fact are solely responsible for that Fast Fact's content. The full set of Fast Facts is available at PCNOW with contact information, and how to reference Fast Facts.Search for more papers by this authorPublished Online:31 Mar 2023https://doi.org/10.1089/jpm.2022.0558AboutSectionsView articleView Full TextPDF/EPUB Permissions & CitationsPermissionsDownload CitationsTrack CitationsAdd to favorites Back To Publication ShareShare onFacebookTwitterLinked InRedditEmail View article"Assessment Tools for Dyspnea and Respiratory Distress at the End of Life #453." Journal of Palliative Medicine, 26(4), pp. 582–583FiguresReferencesRelatedDetails Volume 26Issue 4Apr 2023 InformationCopyright 2023, Mary Ann Liebert, Inc., publishersTo cite this article:Mary Casey Murphy and Jacquelyn Simonis.Assessment Tools for Dyspnea and Respiratory Distress at the End of Life #453.Journal of Palliative Medicine.Apr 2023.582-583.http://doi.org/10.1089/jpm.2022.0558Published in Volume: 26 Issue 4: March 31, 2023PDF download

Impact of compounded drugs on the caregivers’ burden of home therapy management in pediatric palliative care: A descriptive study

Background: Children with medical complexity need complex assistance, that considerably affects caregivers’ quality of life. They often need multiple medications, with a consequent relevant risk of errors or poor compliance. Galenic (or compounded) drugs are blended in the pharmacy’s laboratory worldwide according to different rules and tailoring the patient’s needs. While their use may sometimes simplify these therapies, little is known about parents’ attitude about this issue. Aim: This study aimed at investigating the complexity of the daily therapy management and exploring the parents’ opinions about galenic compounds. Design: Parents were interviewed by using a structured questionnaire. Setting: Children followed by the Pediatric Palliative Care Network in Friuli Venezia Giulia, Italy, were included from November 2021 to April 2022. Those diagnosed with malignancies were excluded, since therapies are mainly administered through a central venous catheter. Results: Thirty-four parents were interviewed. Fourteen patients took drugs orally, one via nasogastric tube (NGT), 18 via gastrostomy, and one orally + NGT. The mean number of drugs taken every day was six (2–14), in mean 10 (3–18) administrations, that overall required a mean of 44 (8–180) minutes to be delivered. Twenty-eight parents used galenic compounds, and 24 reported relevant advantages, because of a ready-to-use and safe formulation. Conclusions: The therapy management of children with medical complexity relies on parents. Galenic compounds may improve both patients’ and caregivers’ quality of life, either in terms of shorter time of administration or smaller risk of errors. Therefore, their use should be encouraged worldwide, according to the different reference rules.

Exploring the Brazilian pediatric palliative care network: a quantitative analysis of a survey data.

The aim of this study was to identify the characteristics of services in Brazil that compound the Brazilian Pediatric Palliative Care (PPC) Network. An online survey was conducted among representatives from PPC services. A total of 90 services from Brazil completed the online survey and answered a questionnaire about the service's characterization, health professionals working in PPC, access to opioid prescription and education, and research in PPC. In total, 80 services (88.9%) were created after 2010, 52 (57.9%) were in the southeast region, 56 (62.2%) were in public hospitals, 63 (70%) had up to 100 beds, and 57 (63.3%) were at the tertiary level. Notably, 88 (97.8%) had a physician in the team and 68 (75.5%) dedicated part-time to PPC. Also, 33 (36.7%) revealed concern with the care of health professionals and 36 (40%) reported difficulty or no access to opioid prescription. Research studies were reported to be conducted in 29 (32.2%) services. This mapping points out to a concentration of PPC services in the southeast region, with part-time professional dedication, and the need to improve professionals' care. Difficulty in opioid access was reported. It is necessary to extend PPC participation to other Brazilian regions, increase time dedicated to PPC, improve professionals' care and improve access to opioid prescription.

Understanding the role and deployment of volunteers within specialist palliative care services and organisations as they have adjusted to the COVID-19 pandemic: A multi-national EAPC volunteer taskforce survey

Background: Early indications were of a major decline in specialist palliative care volunteer numbers during COVID-19. It is important that ongoing deployment and role of volunteers is understood, given the dependence of many palliative care services on volunteers for quality care provision. Aim: To understand the roles and deployment of volunteers in specialist palliative care services as they have adjusted to the impact of COVID-19. Design: Observational multi-national study, using a cross-sectional online survey with closed and free-text option questions. Disseminated via social media, palliative care networks and key collaborators from May to July 2021. Setting/participants: Any specialist palliative care setting in any country, including hospices, day hospices, hospital based or community teams. The person responsible for managing the deployment of volunteers was invited to complete the survey. Results: Valid responses were received from 304 organisations (35 countries, 80.3% Europe). Most cared for adults only (60.9%), provided in-patient care (62.2%) and were non-profit (62.5%). 47.0% had cared for people with COVID-19. 47.7% changed the way they deployed volunteers; the mean number of active volunteers dropped from 203 per organisation to 33, and 70.7% reported a decrease in volunteers in direct patient/family facing roles. There was a shift to younger volunteers. 50.6% said this drop impacted care provision, increasing staff workload and pressure, decreasing patient support, and increasing patient isolation and loneliness. Conclusion: The sustained reduction in volunteer deployment has impacted the provision of specialist palliative care. Urgent consideration must be given to the future of volunteering including virtual modes of delivery, micro-volunteering, and appealing to a younger demographic.

The Declaration on Palliative Care in a Pandemic: report of the African Ministers of Health Meeting and the 7th International African Palliative Care Conference, held from the 24th to 26th August 2022 in Kampala, Uganda and virtually.

The 7th International African Palliative Care Conference and the 4th African Ministers of Health Meeting were held in Kampala from the 24th to 26th August 2022. The theme of the conference - Palliative Care in a Pandemic - reflected the reality of palliative care provision on the continent, and the experience of patients and providers over the past 2 years. It was hosted by the African Palliative Care Association and the Worldwide Hospice Palliative Care Alliance with co-sponsors being the International Children's Palliative Care Network, the International Association of Hospice and Palliative Care, Global Partners in Care and Palliative care in Humanitarian Aid Situations and Emergencies. The conference was held in Kampala as a hybrid event, with a mix of in-person, pre-recorded and virtual presentations. The African Ministers of Health Meeting held on the 24th August was attended by delegates from 25 Ministries of Health, with 92 participants in-person and 122 attending virtually. Hosted by the Minister of State for Primary Health Care in Uganda, the participants at the meeting endorsed a Declaration on Palliative Care in a Pandemic. The main conference, held on the 25th and 26th August, was attended by 334 delegates from 40 countries, 199 (60%) of whom attended in-person. Key themes discussed throughout the conference included: contagious compassion; building a business case and evidence for palliative care in Africa; palliative care policy, funding and sustainability; the importance of collaboration and global partnerships; palliative care for all ages, children through to the elderly, and all conditions; the need to be innovative and creative, embracing technology; and a feeling of hopefulness in the future of palliative care in the region as we go forward together. The impact of the pandemic has been significant on everyone. Despite this, and the limitations imposed by the pandemic, the African palliative care community has come through it stronger, is committed to continuing the development of palliative care across the region, working together and is hopeful for the future.

Reach and efficacy of the eHealth application Oncokompas, facilitating partners of incurably ill cancer patients to self-manage their caregiver needs: a randomized controlled trial

PurposeMany partners of incurably ill cancer patients experience caregiver burden. The eHealth application “Oncokompas” supports these partners to manage their caregiver needs and to find optimal supportive care for themselves. The aim of this randomized controlled trial (RCT) was to investigate the reach of Oncokompas and its efficacy on caregiver burden, self-efficacy, and health-related quality of life (HRQOL).MethodsThe reach was estimated based on eligibility, participation rate, and an evaluation of the recruitment process. Efficacy on caregiver burden was measured using the Caregiver Strain Index + (CSI +). Secondary outcomes were self-efficacy (General Self-Efficacy Scale (GSE)) and HRQOL (EQ-5D VAS). Assessments were scheduled at baseline, 2 weeks after randomization and 3 months after baseline. Linear mixed models were used to compare longitudinal changes between the experimental and control group from baseline to the 3-month follow-up.ResultsThe reach, in terms of eligibility and participation rate, was estimated at 83–91%. Partners were most likely reached via palliative care consultants, patient organizations, and palliative care networks. In the one-and-a-half-year recruitment period and via the 101 organizations involved, 58 partners were included. There were no significant effects of Oncokompas on caregiver burden, self-efficacy, or HRQOL.ConclusionThe reach of Oncokompas among interested individuals was high, but the difficulties that were encountered to include partners suggest that the reach in real life may be lower. This study showed no effect of Oncokompas on caregiver burden, self-efficacy, or HRQOL in partners of incurably ill cancer patients.RelevanceThe results of this study may be used in the process of developing, efficacy testing, and implementing eHealth applications for caregivers of incurably ill cancer patients.Trial registrationNetherlands Trial Register identifier: NTR7636/NL7411. Registered on November 23, 2018 (https://www.trialregister.nl/).

Assessment of disabled paediatric patients for accessing palliative care: validation of a new tool

BACKGROUND: By reviewing the literature, no work has emerged about the presence of a Palliative Care Network dedicated to the Italian disabled pediatric population. however, there is an increase in the prevalence of children with ingrained illness and / or serious disabilities who are in need of such treatment. The difficulty in defining when a child becomes incurable persists. Along with the diagnosis of incurability, the other crucial factor is the extent of "care needs".OBJECTIVES: the aim of the study is to build an assessment tool for defining access criteria to Pediatric Palliative Care for patients with advanced illness and / or severe disability. B METHODS: an observational, prospective, multicenter study was conducted, by using the Clinical Assessment Tool (CAT) scale, which has been proposed by the paediatric hospice of Padua (Italy) without formal validation. We studied a non-randomized sample of 101 patients from five healthcare facilities in Northern Italy. We modified the CAT scale by adding items from other tools used in Palliative Care. The study was divided into two periods at a distance of one month, in order to assess the patients’ clinical evolution. RESULTS: internal consistency of the CAT tool was good ​​(alpha=0.83). Explorative factor analysis showed acceptable loadings on each item. Positive and negative predictive values ​were 0.97 and 0.98, respectively. CONCLUSIONS: the scale is reliable in identifying individuals in need of Pediatric Palliative Care and seems a promising tool for assessing the needs for palliative care in children with ingrained illness and/or severe disability.

Access to Palliative Care Services: Innovative Development of a Statewide Network.

In 2018, the Avera Sacred Heart Hospital and two partners were awarded a planning grant to improve palliative health care services in South Dakota (SD), United States, by assessing palliative care in rural SD communities. Through this effort, a newly formed South Dakota Palliative Care Network (SDPCN) convened statewide partners to develop a palliative care strategy for improving quality palliative care access for individuals with serious illness. Guided by a multidisciplinary governing board, the SDPCN completed needs assessments to (1) better understand the perception of palliative care in SD; (2) assess the palliative care landscape in the state; and (3) explore possible solutions to address the uneven access to palliative care. This article shares the process of network development, considers the future of the SDPCN, and provides a blueprint for improving palliative care in rural areas. The SDPCN sought first to inventory community-based palliative care resources and increase awareness of the need for services followed by addressing gaps identified through a comprehensive assessment. The SDPCN has engaged partners, captured data, and mapped a blueprint for sustaining accessible quality palliative care. Three years since its inception, the SDPCN secured additional funding to sustain the Network and to provide education on palliative care to providers and community members as a first strategic step toward improving overall palliative care in rural communities. The SDPCN currently serves rural SD patients by increasing knowledge of palliative care among health professionals (current and future), fostering Network member engagement, and maintaining an active governing board.

Palliative Care for Patients with End-Stage, Non-Oncologic Diseases-A Retrospective Study in Three Public Palliative Care Departments in Northern Italy.

Patients with irreversible malignant and non-malignant diseases have comparable mortality rates, symptom burdens, and quality of life issues; however, non-cancer patients seldom receive palliative care (PC) or receive it late in their disease trajectory. To explore the characteristics of non-cancer patients receiving PC in northern Italy, as well as the features and outcomes of their care, we retrospectively analyzed the charts of all non-cancer patients initiating PC regimens during 2019 in three publicly funded PC departments in Italy’s populous Lombardy region. We recorded the baseline variables (including data collected with the NECPAL CCOMS-ICO-derived questionnaire used since 2018 to evaluate all admissions to the region’s PC network), as well as treatment features (setting and duration) and outcomes (including time and setting of death). Of the 2043 patients admitted in 2019, only 12% (243 patients—131 females; mean age 83.5 years) had non-oncological primary diagnoses (mainly dementia [n = 78], heart disease [n = 55], and lung disease [n = 30]). All 243 had Karnofsky performance statuses ≤ 40% (10–20% in 64%); most (82%) were malnourished, 92% had ≥2 comorbidities, and 61% reported 2–3 severe symptoms (pain, dyspnea, and fatigue). Fifteen withdrew or were discharged from the study PCN; the other 228 remained in the PCN and died in hospice (n = 133), at home (n = 9), or after family-requested transfer to an emergency department (n = 1). Most deaths (172/228, 75%) occurred <3 weeks after PC initiation. These findings indicate that the PCN network we studied cares for few patients with life-limiting non-malignant diseases. Those admitted have advanced-stage illness, heavy symptom burdens, low performance statuses, and poor survival. Additional efforts are needed to improve PCN accessibility for non-cancer patients.

Undue Influence versus Relational Autonomy in Clinical Decision Making #439.

Undue Influence versus Relational Autonomy in Clinical Decision Making #439.

The Intervention Areas of the Psychologist in Pediatric Palliative Care: A Retrospective Analysis.

Infants, children and adolescents with life-limiting and life-threatening disease need long-term care that may change according to disease’s natural history. With the primary goal of quality of life, the psychologist of pediatric palliative care (PPC) network deals with a large variety of issues. Little consideration has been given to the variety of intervention areas of psychology in PPC that concern the whole life span of the patient and family. The PPC network is composed by a multidisciplinary team of palliative care specialists that intervenes at home, in the hospital and in every place where the patient is living. The network coordinates different public health services to respond to clinical, psychosocial and spiritual needs. In these scenarios, the psychological need is not a single event but a moment inserted in the complexity of the child’s needs. This retrospective monocentric project consists of an analysis of characteristics of psychological interventions in our PPC service. The time frame taken into consideration is 2019–2020, analyzing the clinical records of 186 patients of Pediatric Palliative Care and Pain Service of Veneto Region (Italy). The areas that emerged in the analysis show how the intervention of the psychologist in PPC does not concern only end-of-life, but a series of topics that are significant for the family to guarantee psycho-social wellbeing oriented toward the best quality of life. In conclusion, these different topics highlight the complexity of the child and family experience. This variety must be taken into consideration, the psychologist must increase holistic support with a dedicated skills curriculum.

Diagnostic and therapeutic pathway for pain in a Continuing Care setting: a survey at an Italian Continuing Care Service.

Law no. 38 of 15 March 2010 ensures and governs the access to the palliative care and pain management network for patients who require it. The professional roles involved in the project have been identified by the law, with the specific experience and expertise in the field of palliative care and pain management, by allocating a meaningful role to general practitioners (GPs). For this reason, an important direct training plan has been drawn up that GPs can count on for dedicated refresher courses to increase and deepen their knowledge in this specific clinical field. If the role of the GPs in the pain management and palliative care network was well-defined by the law, we cannot say the same for the Continuing Care Physician (CCP), a role that only partially overlaps that of the GP. The study observed the response of a Continuing Care Service (CCS) to the demand for services from patients with pain-related problems. The role of the CCP is, therefore, outlined in the pain therapy care network by observing the services provided to patients experiencing pain that is understood as being a non-deferrable problem. A survey was conducted at the CCSs site in Aquila, AS-01 Abruzzo. For this reason, the attending physician records the data of patients who consult the CCSs for pain-related problems on an appropriate questionnaire. The survey period covered a total of 68 days (1 January - 8 March 2020). Results. One hundred sixty five sheets were completed; females were more represented than males (57.6% v 42.4%) and the 36-65 age group appears most greatly represented (47.9%). One of the most frequent reasons for consulting the service is "musculoskeletal pain" (58.2%), followed by abdominal pain (15.8%). In the majority of patients, pain lasted from days (53.9%), with an average of approximately 3 days (3.1± 2.9), or hours in 40% of cases, with an average of over 6 hours (6.54±3.1). 88.5% of patients defined the level of pain experienced as "severe" (NRS=7-10), and the intensity of the pain associated with its repetitiveness (80.3% vs 92.6%) as "severe", with a statistically significant difference in relation to nonrepetitiveness cases (p=0.02). 66.1% of patients said that they had taken analgesics independently, with nonsteroidal anti-inflammatory drugs (NSAIDs) the most frequently taken (53.5%). Patients who turned to the CCS received a pharmacological prescription in almost all cases. NSAIDs, specifically, were the most prescribed medicines (64.8%), followed by muscle relaxants (29.7%). Tramadol was the most represented among opioids, which was prescribed in 7.9% of cases. Just 6.1% of patients were entered into the regional pain management network. The results of the survey show that a large number of patients turn to the CCS to resolve painful symptoms of various natures. The study offers some food for thought concerning the role of CCPs and the importance of providing for their inclusion in the pain therapy clinical and training pathways provided for by Law 38/2010. This would ensure its more effective implementation and, therefore, better care for patients experiencing painful pathologies.

Translating Research to Action: The Development of a Pediatric Palliative Cancer Care Advocacy Tool in Eurasia.

PURPOSEThe Assessing Doctors' Attitudes on Palliative Treatment study was conducted in 11 Eurasian countries to assess physician knowledge of and structural barriers to integration of palliative care into pediatric oncology. After publication, regional collaborators identified the need to disseminate country-specific study results locally and provide policy recommendations to inform stakeholders.METHODSThe Assessing Doctors' Attitudes on Palliative Treatment report was developed with Eurasian and St Jude pediatric palliative care and oncology experts to summarize study findings and deliver country-level data to local stakeholders. In parallel, an assessment was developed to explore how regional collaborators intend to use the report to improve local advocacy and dissemination of research findings. The country report and assessment were translated to English, Russian, and Mongolian.RESULTSCountry-specific two-page reports display study findings on pediatric palliative care education, access to pediatric palliative care services, and barriers to and timing of integration with cancer care, alongside clinical and policy recommendations. These reports were distributed to collaborators in 11 countries. Assessment results (N = 30) demonstrated that regional collaborators planned to distribute the report to institutional and government stakeholders, aiming to increase access to pediatric palliative care services (77%), establish a community-based palliative care network (70%), and increase opportunities for specialization (70%).CONCLUSIONWe describe the development of an evidence-based advocacy tool to inform local health and education policy in Eurasia. This summary report of study findings, translated to local languages and adapted to a broader audience, is currently used to advocate for greater access and quality of palliative care for children with cancer. This work may serve as the basis for future dissemination efforts of scientific research.

The ongoing impact of Covid-19 pandemic on children with medical complexity: the experience of an Italian pediatric palliative care network

BackgroundItaly was the first European country to experience a massive outbreak of Sars-coV-2 in March 2020. Severe measures were introduced to face the pandemic, significantly impacting all healthcare services, including pediatric palliative care (PPC) networks. We investigated how the Covid-19 pandemic modified the provision of PPC services in Friuli Venezia Giulia, Italy. Both the acute and long-term impacts on the families were addressed.MethodsWe administered a retrospective three-sections online questionnaire to the eligible families assisted by our regional PPC network. Inclusion criteria were: child needing specialistic PPC, adequate knowledge of the Italian language, being in charge of the PPC regional network of Friuli Venezia Giulia from February 1, 2020. The three sections examined the same issues in different periods: the pre-covid period (until February 29, 2020), the lockdown period (March 1, 2020, to April 30, 2020), and the post-lockdown period (May 2021).ResultsTwelve patients were included. During the lockdown period, 54.6% of children had to stop physiotherapy sessions, while, among those who continued, 80.0% experienced a reduction in the sessions’ frequency. In the post-lockdown period, 45.5% of children did not have physiotherapy as often as before the pandemic onset. Overall, the access to medical visits during the lockdown and after its end was significantly reduced (p = 0.01).The level of support perceived by the families descended from grade 3 (intermediate) in the pre-covid period to 2 (low) during the lockdown (p < 0.05) and returned to grade 3 in the post-lockdown period.ConclusionThe COVID-19 pandemic and the related restrictions impacted the families and caused a transitory contraction of the perceived support. The most significant change was reduced access to medical visits and physiotherapy, which lasted over a year after the start of the pandemic.

Setting-up a Supportive and Palliative Care Service for Children with Life-threatening Illnesses in Maharashtra - Children's Palliative Care Project in India.

Objectives:To describe the key initiatives that were successful in planning and implementing hospital- and community-based Paediatric Palliative Care (PPC) services designed for a resource-limited setting in Maharashtra, India, in collaboration with DfID.Materials and Methods:The CPC project was a 5-year service development project (April 2010–March 2015) conducted in Maharashtra, India, developed in collaboration with the Department for International Development (DFID), Hospice UK, International Children’s Palliative Care Network (ICPCN), Indian Association of Palliative Care (IAPC) and Tata Memorial Centre, to advocate and care for the needs of children and families with life-limiting illnesses in a non-cancer setting. It was implemented through raising awareness and sensitising hospital administrators and staff about PPC, providing education and training on PPC, team building, and data collection to understand the need for PPC.Results:The total number of children enrolled in the CPC project was 866, 525 (60.6%) were male with a mean age of 9.3 years. Major symptom across sites was mild pain, and serial Quality of Life measurement (through PedsQL questionnaire) showed improvement in social, psychological and school performance. Advocacy with the Ministry of Health helped in procurement of NDPS licenses in district hospitals, and led to access to palliative care for children at policy level.Conclusion:The model of PPC service development can be replicated in other resource-limited settings to include children with life-limiting conditions. The development of pilot programmes can generate interest among local physicians to become trained in PPC and can be used to advocate for the palliative care needs of children.

Children\u2019s palliative care education and training: developing an education standard framework and audit

BackgroundThe need to align the range of guidance and competencies concerning children’s palliative care and develop an education framework have been recommended by a UK All-Party Parliament Group and others. In response to these recommendations the need for a revised children’s palliative care competency framework was recognized. A Children’s Palliative Care Education and Training Action Group, comprising champions in the field, was formed across UK and Ireland in 2019 to take this work forward. Their aim was to agree core principles of practice in order to standardize children’s palliative care education and training.MethodsOver four meetings the Action Group reviewed sources of evidence and guidance including palliative care competency documents and UK and Ireland quality and qualification frameworks. Expected levels of developing knowledge and skills were then agreed and identified competencies mapped to each level. The mapping process led to the development of learning outcomes, local indicative programme content and assessment exemplars.ResultsFour sections depicting developing levels of knowledge and skills were identified: Public Health, Universal, Core, Specialist. Each level has four learning outcomes: Communicating effectively, Working with others in and across various settings, Identifying and managing symptoms, Sustaining self-care and supporting the well-being of others. An audit tool template was developed to facilitate quality assurance of programme delivery. The framework and audit tool repository is on the International Children’s Palliative Care Network website for ease of international access.ConclusionsThe framework has received interest at UK, Ireland and International launches. While there are education programmes in children’s palliative care this is the first international attempt to coordinate education, to address lay carer education and to include public health.

Safety and Feasibility of Home Transfusions in Pediatric Palliative Care: A Preliminary Report

BackgroundWhile hematological symptoms are considered difficult to manage in a Pediatric Palliative Care setting, home may still represent a safe and convenient place for transfusions in patients with advanced malignancy or chronic conditions. This research focuses on the safety and feasibility of a home transfusion program. MethodsThis is a case series of patients between 0 and 18 years diagnosed with advanced malignancy or incurable chronic conditions and eligible to Pediatric Palliative Care who received home platelet or packed red cell transfusions. For all patients, we recorded adverse events such as acute hemolytic reactions, allergic reactions, or any emergency condition requiring hospital admission, equipment failure, blood product transport or storage errors, errors in patient identification, and personnel safety issues. We explored parental satisfaction with a Likert-type questionnaire and short open questions. ResultsWe reviewed 101 transfusion procedures for six patients in Pediatric Palliative Care performed by the Regional Pediatric Palliative Care network between 2014 and 2020. We did not report any adverse effects. Families reported satisfaction and a sense of safety and positively evaluated the opportunity of having transfusion at home to minimize the disruption in everyday life. The cost analysis resulted in a consistent saving for the Regional Health System. ConclusionThis study supports the safety and feasibility of home transfusion in Pediatric Palliative Care.