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1.
Palliat Support Care ; : 1-9, 2024 May 13.
Article En | MEDLINE | ID: mdl-38736367

BACKGROUND: Palliative care access in Nepal is severely limited, with few health-care providers having training and skills to pain management and other key aspects of palliative care. Online education suggests an innovation to increase access to training and mentoring, which addresses common learning barriers in low- and middle-income countries. Project ECHO (Extensions for Community Health Care Outcomes) is a model of online education which supports communities of practices (COPs) and mentoring through online teaching and case discussions. The use of online education and Project ECHO in Nepal has not been described or evaluated. SETTING: An online course, consisting of 14 synchronous weekly palliative care training sessions was designed and delivered, using the Project ECHO format. Course participants included health-care professionals from a variety of disciplines and practice settings in Nepal. OBJECTIVES: The goal of this study was to evaluate the impact of a virtual palliative care training program in Nepal on knowledge and attitudes of participants. METHODS: Pre- and post-course surveys assessed participants' knowledge, comfort, and attitudes toward palliative care and evaluated program acceptability and barriers to learning. RESULTS: Forty-two clinicians, including nurses (52%) and physicians (48%), participated in program surveys. Participants reported significant improvements in their knowledge and attitudes toward core palliative care domains. Most participants identified the program as a supportive COP, where they were able to share and learn from faculty and other participants. CONCLUSION: Project ECHO is a model of online education which can successfully be implemented in Nepal, enhancing local palliative care capacity. Bringing together palliative care local and international clinical experts and teachers supports learning for participants through COP. Encouraging active participation from participants and ensuring that teaching addresses availability and practicality of treatments in the local health-care context addresses key barriers of online education. SIGNIFICANCE OF RESULTS: This study describes a model of structured virtual learning program, which can be implemented in settings with limited access to palliative care to increase knowledge and attitudes toward palliative care. The program equips health-care providers to better address serious health-related suffering, improving the quality of life for patients and their caregivers. The program demonstrates a model of training which can be replicated to support health-care providers in rural and remote settings.

2.
Palliat Support Care ; : 1-9, 2024 May 13.
Article En | MEDLINE | ID: mdl-38736371

OBJECTIVES: To explore the learning experiences of participants (learners and teachers), in a yearlong tele-teaching and mentoring program on pediatric palliative care, which was conducted using the Project ECHO (Extension for Community Healthcare Outcomes) model and consisted of 27 teaching and clinical case discussion sessions for palliative medicine residents in India and Bangladesh. The goal of the study is to explore how participation and learning is motivated and sustained for both residents and teachers, including the motivators and challenges to participation and learning in a novel online format. METHODS: Qualitative interviews with ECHO participants, including learners and teachers were conducted. Interviews were recorded and transcribed. Thematic analysis of interview data was conducted within an interpretive description approach. RESULTS: Eleven physicians (6 residents, 5 teachers) participated in interviews. Key elements of the ECHO program which participants identified as supporting learning and participation include small group discussions, a flipped classroom, and asynchronous interactions through social media. Individual learner characteristics including effective self-reflection and personal circumstances impact learning. Providing opportunities for a diverse group of learners and teachers, to interact in communities of practice (COP) enhances learning. Three major themes and 6 subthemes describing learning processes were identified. Themes included (1) ECHO program structure, (2) learner characteristics, and (3) COP. Subthemes included flipped classroom, breakout rooms, learning resources, personal circumstances, self-awareness of learning needs, and community interactions. SIGNIFICANCE OF RESULTS: Project ECHO suggests a novel model to train health providers, which is effective in low- and middle-income countries. Online learning programs can lead to learning through community of practice when learners and teachers are able to interact and engage in peer support and reflective practice. Educators should consider incorporating small group discussions, a flipped classroom design, and opportunities for asynchronous interactions to enhance learning for participants in online learning programs.

3.
J Med Educ Curric Dev ; 11: 23821205241234541, 2024.
Article En | MEDLINE | ID: mdl-38405367

OBJECTIVES: The goal of this implementation study was to describe the implementation and evaluation of the impact of an online pediatric palliative care training program in Nepal, using the Project ECHO model. METHODS: The study used mixed methods, including a program case study describing the online learning program and before-and-after surveys of program participants, assessing learning through changes in knowledge, comfort, and attitudes. An end-of-program survey was used to evaluate participants' overall experiences with the learning program and use of the learning resources. RESULTS: A literature review, stakeholder surveys, and expert input informed the design of the intervention. The course used the Project ECHO model of online education, with modifications based on the leadership team's previous ECHO experiences and local stakeholder input. The intervention occurred over 9 months, with 22 online teaching sessions. Each session consisted of a didactic lecture, case presentation, and interactive discussion with expert clinical teachers. Fifty-five clinicians in Nepal participated, including physicians (47%), nurses (44%), and psychotherapists (5%). Clinicians reported improvements in knowledge, skills, and attitudes after program participation. Program acceptability scores were high, with 93% of participants reporting that the course provided effective learning. CONCLUSIONS: Project ECHO can be successfully implemented to deliver continuing professional development in Nepal. Delivering palliative care education online using the Project ECHO model, leads to improved knowledge, skills, and attitudes for clinicians. Project ECHO suggests an innovative solution which can provide training and support to clinicians in settings where educational opportunities in palliative care are limited.

4.
Health Serv Insights ; 17: 11786329231222858, 2024.
Article En | MEDLINE | ID: mdl-38269395

Neonatal palliative care is a specialized area within children's palliative care, which focusses on the needs of infants with life-limiting or life-threatening conditions. Nearly one quarter of global neonatal deaths occur in India, where neonatal palliative care evidence is limited. This study describes the development and implementation of a neonatal palliative care program within a neonatal intensive care unit (NICU) at a government hospital, describing the implementing an 8-month pilot palliative care program for neonates, including the patterns of care, and barriers and enablers of success. The hospital-based palliative care team included trained pediatric palliative care physicians, a nurse, and a counselor. There was a steady increase in monthly referrals. There were 110 referrals in total, including 89 (81%) deaths and 18 (16%) babies were alive at the time of final follow-up, 10 months after the pilot program was completed. The program addressed physical symptoms, including providing morphine, as well as psychosocial and spiritual concerns of families. A model of hospital-based palliative care for neonates can be implemented within NICUs in tertiary government hospitals in India. Neonatal palliative care programs should include partnerships with charitable organizations to support implementation costs and provide palliative care training, mentorship, and capacity-building support.

5.
Pediatr Radiol ; 54(3): 385-391, 2024 03.
Article En | MEDLINE | ID: mdl-37535093

BACKGROUND: Radiology virtual teaching sessions utilize live video conferencing to promote collaborative learning and engagement by discussing radiology cases. Because of its convenience and flexibility, this mode of education has gained popularity, particularly after the corona virus disease 2019 pandemic. OBJECTIVE: We describe our experience in organizing a series of "Global Health Imaging Case Competitions" for trainees in low- and middle-income countries (LMICs). These competitions provide the trainees with an opportunity to present unique radiology cases, network with radiologists, learn about various radiology topics, win prizes and potentially publish their case reports in a peer-reviewed journal. MATERIALS AND METHODS: Planning and execution of the competition involves several steps. First, trainees are invited to participate and submit abstracts discussing unique cases. The organizing committee grades these abstracts; the authors of the 20 abstracts with the highest scores are asked to submit a video presentation of their cases to be presented during the live webinar. During this webinar, presentations are displayed and graded to select winners. Additionally, the audience votes to choose a participant as the people's favorite. We have completed four cycles (Africa, Latin America and the Caribbean, Africa and the Middle East and Asia) and will continue in the same order of rotation. RESULTS: Attendance totalled 2,510 participants from 50 countries. Pediatric cases represented the majority of cases among finalists. Feedback was positive; 26 out of 29  (90%) participants surveyed indicated that the webinar was "very good" to "excellent" with well-organized and challenging cases. Diversity of participating countries was noted. Limitations included technology barriers such as internet connectivity. CONCLUSION: This innovative approach emphasizing audience participation engaged trainees from LMICs and fostered locoregional collegiality and mentoring.


COVID-19 , Mentoring , Radiology , Humans , Child , Learning , Radiology/education , Radiologists
6.
Infect Control Hosp Epidemiol ; 45(3): 360-366, 2024 Mar.
Article En | MEDLINE | ID: mdl-37929604

OBJECTIVE: To describe educational interventions that have been implemented in healthcare settings to increase the compliance of healthcare personnel (HCP) with cleaning and disinfection of noncritical portable medical equipment (PME) requiring low-level disinfection (LLD). DESIGN: Systematic review. METHODS: Studies evaluating interventions for improving LLD practices in settings with HCP, including healthcare students and trainees, were eligible for inclusion. RESULTS: In total, 1,493 abstracts were identified and 1,416 were excluded, resulting in 77 studies that underwent full text review. Among these, 68 were further excluded due to study design, setting, or intervention. Finally, 9 full-text studies were extracted; 1 study was excluded during the critical appraisal process, leaving 8 studies. Various forms of interventions were implemented in the studies, including luminescence, surveillance of contamination with feedback, visual signage, enhanced training, and improved accessibility of LLD supplies. Of the 8 included studies, 4 studies reported successes in improving LLD practices among HCP. CONCLUSIONS: The available literature was limited, indicating the need for additional research on pedagogical methods to improve LLD practices. Use of visual indicators of contamination and multifaceted interventions improved LLD practice by HCP.


Disinfection , Health Facilities , Humans , Health Personnel/education , Delivery of Health Care , Students
7.
J Pain Symptom Manage ; 66(4): 338-350.e11, 2023 10.
Article En | MEDLINE | ID: mdl-37414349

CONTEXT: 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. OBJECTIVES: We conducted a systematic review to characterize the strengths, weaknesses, opportunities, and threats (SWOT) of PPC program implementation in LMIC. METHODS: 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. RESULTS: 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 nine 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. CONCLUSION: 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.


Hospice Care , Hospice and Palliative Care Nursing , Child , Humans , Palliative Care , Developing Countries , Income
8.
Palliat Support Care ; : 1-8, 2023 Jun 08.
Article En | MEDLINE | ID: mdl-37288722

OBJECTIVES: To explore experiences of pediatric clinicians participating in a serious illness communication program (SICP) for advance care planning (ACP), examining how the SICP supports clinicians to improve their communication and the challenges of implementing new communication tools into clinical practice. METHODS: A qualitative description study using individual interviews with a diverse group of pediatric clinicians who participated in 2.5-hour SICP training workshops at pediatric tertiary hospitals. Discussions were transcribed, coded, and arranged into overarching themes. Thematic analysis was conducted using interpretive description methodology. RESULTS: Fourteen clinicians from 2 Canadian pediatric tertiary hospital settings were interviewed, including nurses (36%), physicians (36%), and social workers (29%), from the fields of neonatology (36%), palliative care (29%), oncology (21%), and other pediatric specialties (14%). Key themes included specific benefits of SICP, with subthemes of connecting with families, increased confidence in ACP discussions, providing tools to improve communication, and enhanced self-awareness and self-reflection. A second theme of perceived challenges emerged, which included subthemes of not having the conversation guide readily accessible, divergent team communication practices, and particular features of the clinical environment which limited the possibility of engaging in ACP discussions with parents. SIGNIFICANCE OF RESULTS: A structured program to enhance serious illness communication supports clinicians to develop skills and tools to increase their confidence and comfort in conducting conversations about end-of-life issues. Addressing challenges of adopting the newly learned communication practices, by providing access to digital SICP tools and conducting SICP training for clinical teams may further support clinicians to engage in ACP.

9.
Health Serv Insights ; 16: 11786329231162996, 2023.
Article En | MEDLINE | ID: mdl-36968659

Background: Globally, more than 97% of children needing palliative care reside in low- and middle-income countries, where there is very limited access to palliative care. Several community-based palliative care programs focused on adults, have been described in resource limited settings, suggesting a simple and low-cost approach to providing palliative care. The implementation of community-based palliative care for children has not previously been described. Context: This community case study describes the implementation of an innovative model of community-based palliative care program in and urban informal settlement, (Korail Slum, Bangladesh). The program is led by a local government hospital, with experience in community-based palliative care, in partnership with the local community. Problem: Children with serious conditions in an urban unformal settlement do not have access to health services which address their medical, psychosocial and spiritual needs. This gap leads to a significant burden of preventable suffering for them and their families. Solution: A community-based palliative care program was implemented, which includes home care by trained community health workers, with support and supervision from palliative care nurses and physicians. The program's objective is to provide effective symptom management, clear communication about the child's condition with parents, and psychosocial support including support for basic needs. The program was free for families including medications, medical equipment, physiotherapy, and speech therapy. The program was monitored through regular assessments of quality of life using standardized tools (PedsQL Family Impact Module), as well as interviews and focus group discussions. Conclusion and lessons learned: A model of community-based palliative care for children can be implemented in an urban informal settlement. Program effectiveness is enhanced by community health workers who share language, culture, and life-experiences with the individuals they serve. Partnerships with local health care facilities and community groups strengthen the program's sustainability. Ensuring financial sustainability remains a challenge.

10.
Palliat Med ; 37(4): 602-626, 2023 04.
Article En | MEDLINE | ID: mdl-36428280

BACKGROUND: In 2020, the International Association for Hospice and Palliative Care redefined palliative care to incorporate the concept of serious health-related suffering. An estimated 21 million children globally live with conditions which would benefit from a palliative approach to relieve suffering. Bangladesh is a lower-middle income country with isolated provision of palliative care. AIM: To synthesise existing evidence describing serious health-related suffering of children with disability and their families living in Bangladesh and the intersection between this suffering, palliative care and rehabilitation. DESIGN: Scoping review methodology. DATA SOURCES: A search strategy related to serious health-related suffering and childhood disability was applied to online databases and grey literature. English language studies (1990-2021) were included. Papers pertaining to serious health-related suffering of typically developing children and those over eighteen years were excluded. Data which addressed the three domains of serious health-related suffering (physical, social and emotional/spiritual) were extracted. Palliative care interventions were assessed with a pre-existing checklist. RESULTS: Forty-six studies were included, representing ten different methodologies. Sample sizes ranged from 11 to 2582 participants, with 87% of studies including children with cerebral palsy. Serious health-related suffering was described in 100% of the studies, only 14 of the studies described specific interventions to mitigate suffering. Convergence between palliative care and rehabilitation approaches was evident. CONCLUSION: Findings document the extensive nature and burden of serious childhood health-related suffering that may be remediated by a palliative approach. They highlight the urgent need to prioritise service development and research in this area.


Disabled Children , Hospice Care , Hospices , Child , Humans , Bangladesh , Palliative Care/methods
11.
BMC Health Serv Res ; 22(1): 1057, 2022 Aug 18.
Article En | MEDLINE | ID: mdl-35982429

BACKGROUND: There is no standard assessment tool for pediatric home care recipients in Canada, limiting the availability of comparable, population-based data. The objective of this study was to describe pediatric home care recipients who were part of a pilot implementation of the interRAI Pediatric Home Care Assessment Form (PEDS-HC) among medically complex children referred to home care agencies in three regions in Ontario, Canada. METHODS: All 14 agencies providing home care to children in Ontario were invited to participate in the pilot project, and 9 participated in an education session. Three of these agencies used the PEDS-HC during the pilot implementation between February 2018 and March 2020. We used de-identified data to describe the demographics, home care needs, and diagnoses of pediatric home care recipients. RESULTS: The sample of 474 assessments was predominantly male (60.34%), with an average age at assessment of 12.36 years (SD 4.56). Most (78.48%) reported English as their primary language. Most children assessed had between two and eight medical diagnoses. Diagnoses reported varied: gastrointestinal, musculoskeletal, respiratory and neurological conditions were most common. The prevalence of urinary incontinence (40.1%) and bowel incontinence (70.9%) were high. Over 60% of children were rarely or only sometimes understood. A majority of children had adequate hearing (83.5%) and vision (68.6%). Extensive services were being provided in 10% of children assessed. Most children received care both at school and at home (70.89%), with 20.89% receiving home care only. CONCLUSIONS: The PEDS-HC provides a detailed, standardised descriptive profile of medically complex children receiving home care. Expanding use of PEDS-HC would promote consistency in care planning and delivery on the patient level, enable cross-jurisdictional comparisons, and inform utilization tracking and health care funding decisions on the organization and provincial levels.


Home Care Services , Child , Female , Humans , Male , Ontario/epidemiology , Palliative Care , Pilot Projects , Prevalence
12.
J Med Educ Curric Dev ; 9: 23821205221096099, 2022.
Article En | MEDLINE | ID: mdl-36032810

Background: Palliative care is an essential component of health responses in humanitarian settings, yet it remains largely unavailable in these settings, due to limited availability of palliative care training for healthcare professionals. Online training programs which connect experts to clinicians in the field have been proposed as an innovative strategy to build palliative care capacity humanitarian settings. Objective: To describe the implementation and evaluate the impact of delivering palliative care education using an established virtual learning model (Project ECHO) for healthcare clinicians working in the Rohingya refugee response in Bangladesh. Program acceptability and the impacts on learners' self-reported knowledge, comfort, and practice changes were evaluated. Methods: Using the Project ECHO model, an education program consisting of 7 core sessions and monthly mentoring sessions was developed. Each session included a didactic lecture, case presentation and interactive discussion. Surveys of participants were conducted before and after the program to assess knowledge, confidence, and attitudes about palliative care as well as learning experiences from the program. Results: This virtual palliative care training program engaged 250 clinicians, including nurses (35%), medical assistants (28%) and physicians (20%). Most participants rated the program as a valuable learning experience (96%) that they would recommend to their colleagues (98%). Participants reported improvements in their knowledge and comfort related to palliative care after participation in the program, and had improved attitudes towards palliative care with demonstrated statistical significance (p < 0.05). Conclusions: Virtual training is a feasible model to support healthcare providers in a humanitarian health response. Project ECHO can help to address the urgent need for palliative care in humanitarian responses by supporting healthcare workers to provide essential palliative care to the growing number of individuals with serious health-related suffering in humanitarian settings.

13.
Respir Care ; 2022 Jul 26.
Article En | MEDLINE | ID: mdl-35882472

BACKGROUND: Nebulized therapies form an important component of treatment in people with cystic fibrosis (CF). It is important for people with CF to continue to take their nebulized medications when traveling. METHODS: A self-completing anonymous questionnaire was developed, as part of a quality improvement project, to support people with CF educational needs when traveling. The questionnaire was prepared to gain an insight into (1) adherence to nebulized therapies when traveling and (2) nebulizer cleaning and disinfection practices while traveling. Polar questions (yes/no response) were mainly employed as well as free text and closed questions. RESULTS: There were 68 respondents to the survey, including 31 males, 33 females, and 4 respondents who did not enter their sex. Respondents who declared their age (n = 63) ranged from 17-71 y (median = 30 y; with 94% of respondents in age range 20-39 y). When traveling, 38% (25/66) of respondents indicated that nebulized therapy was not performed during travel. The most common method of nebulizer maintenance while traveling was washing with soap and water (43%), followed by boiling water (18%), as well as the employment of 5 other methods of nebulizer maintenance. Some respondents (2%) indicated that they did not perform any method of nebulizer maintenance while traveling until they returned home. CONCLUSIONS: This study identified that nebulizer care and hygiene are less than optimal when traveling as well as identifying a worrying trend of taking a "nebulizer vacation." People with CF need to be aware of risks to their health in being nonadherent with their nebulized medication(s) while traveling as well as risks of acquiring a new pathogen through suboptimal cleaning/disinfection/drying management of their nebulizer. CF multidisciplinary teams should emphasize the importance of sustaining nebulized treatments when traveling and practicing effective nebulizer washing, disinfection, and drying procedures.

14.
Health Serv Insights ; 15: 11786329221078124, 2022.
Article En | MEDLINE | ID: mdl-35360089

High quality pediatric homecare requires comprehensive assessment of the needs, supports, and health care challenges of children with special healthcare needs and their families. There is no standardized homecare assessment system to evaluate children's clinical needs in the home (support services, equipment, etc.) in Ontario, Canada, which contributes to inequitable homecare service allocation. In 2017, the interRAI Pediatric Home Care assessment tool (PEDS-HC) was implemented on a pilot basis in several regions of Ontario. This qualitative descriptive study explores the experiences of homecare coordinators using the PEDS-HC, seeking to understand the utility and feasibility of this tool through focus group discussion. Four major themes were identified including: the benefits of the tool; areas for modification; challenges to use; and Clinical Assessment Protocols to develop. These themes can guide modifications to the tool to improve utility and improve pediatric home care services. The PEDS-HC is an effective tool to assess children needing homecare in a standardized and comprehensive manner. Use of the tool can improve the quality of homecare services by ensuring equity in service provision and facilitate early identification of clinical issues to prevent unexpected health deteriorations.

15.
Synth Syst Biotechnol ; 7(2): 671-676, 2022 Jun.
Article En | MEDLINE | ID: mdl-35224235

Per- and Polyfluorinated alkyl substances (PFAS) are a broad class of synthetic compounds that have fluorine substituted for hydrogen in several or all locations and are globally categorized as PFCs (perfluorochemicals; commonly called fluorinated chemicals). These compounds have unique chemical and physical properties that enable their use in non-stick surfaces, fire-fighting efforts, and as slick coatings. However, recent concerns over the health effects of such compounds, specifically perfluorooctanoic acid and perfluorooctane sulfonic acid (PFOA, PFOS; PFOA/S), have led to increased attention and research by the global community into degradation methods. In this study, soil samples from PFAS-contamination sites were cultured and screened for microbes with PFOA/S degradation potential, which led to the identification of Delftia acidovorans. It was found that D. acidovorans isolated from PFAS-contaminated soils was capable of growth in minimal media with PFOA as a sole carbon resource, and an observable fluoride concentration increase was observed when cells were exposed to PFOA. This suggests potential activity of a dehalogenase enzyme that may be of use in PFOA or PFAS microbial remediation efforts. Several associated haloacid dehalogenases have been identified in the D. acidovorans genome and have been engineered for expression in Escherichia coli for rapid production and purification. These enzymes have shown potential for enzymatic defluorination, a significant step in biological degradation and removal of PFOA/S from the environment. We hypothesize that bioremediation of PFAS using naturally occurring microbial degradation pathways may represent a novel approach to remove PFAS contamination.

17.
Glob Pediatr Health ; 8: 2333794X211043061, 2021.
Article En | MEDLINE | ID: mdl-34485624

Project ECHO (Extension of Community Healthcare Outcomes) is an innovative model of online education which has been proposed to enhance access to palliative care in resource-limited settings. There is limited literature describing how health care providers in low-and middle-income countries benefit from and learn from this type of training. This qualitative description study explores the learning experiences of participants in a Project ECHO program on pediatric palliative care in South Asia through focus group discussions. Discussions were transcribed, coded, independently verified, and arranged into overarching themes. We identified learning themes including the importance of creating a supportive learning community; the opportunity to share ideas and experiences; gaining knowledge and skills, and access to additional learning materials. Designing future programs to ensure a supportive and interactive learning community with attention cultural challenges may enhance learning from future Project ECHO programs.

18.
Glob Pediatr Health ; 8: 2333794X21999155, 2021.
Article En | MEDLINE | ID: mdl-33816710

We describe the palliative care needs of children with chronic conditions and their caregivers in an urban slum in Bangladesh. In this cross-sectional study, we interviewed 25 caregivers whose children receive support from a community-based program lead by community health workers, that provides medication, medical supplies, food, caregiver training, and psychological support free of charge. The chronic conditions of children in the program included cerebral palsy (80%), congenital heart disease (8%), neurodegenerative conditions (4%), cancer (4%), and intellectual disabilities (4%). Common symptoms included cough or breathing problems (64%), fever (56%), and pain (56%). Most caregivers (96%) reported they were unable to do any paid work due to their child's needs and in all families, the child's condition had a significant impact on their financial situation. Community-based palliative care programs can be developed to support children with chronic conditions who may not access care from acute care facilities.

19.
Paediatr Child Health ; 26(1): e11-e16, 2021 Feb.
Article En | MEDLINE | ID: mdl-33542774

BACKGROUND: Perinatal palliative care is a relatively new component of paediatric palliative care which supports families who are expecting the birth of a child with a life-limiting condition. This study seeks to understand the characteristics of the infants and families referred for perinatal palliative care and the context for referrals in terms of diagnoses, referral characteristics, interventions, and outcomes. METHODS: A retrospective chart review of infants with prenatally diagnosed life-limiting conditions that were referred for perinatal palliative care. RESULTS: Eighty-five referrals were made for perinatal palliative care during the 10-year period, of which, 84 chose to continue with the service. Average gestational age at diagnosis was 23 weeks, and the mean time between diagnosis and referral to palliative care was 7 weeks. Stillbirths were common, occurring in 29% cases. Of livebirths, 59% of the infants survived for 2 days, and 80% died within 30 days. The most commonly referred conditions were trisomy 13 or 18 (24%), severe central nervous system malformations (20%), and severe congenital cardiac disease (16%). Referrals were most often made by neonatologists (39%), and maternal-fetal medicine specialists (36%). DISCUSSION: Our study confirms previously observed characteristics of diagnosis, referrals, and outcomes, while providing the most detailed account of lifespans for particular diagnoses to date. Our findings validate the need for perinatal palliative care, as 99% of those referred continued with the service. Future research should adopt a prospective approach to identify critical factors affecting decision making of families and physicians in the wake of a life-limiting diagnosis.

20.
JCO Glob Oncol ; 7: 210-222, 2021 02.
Article En | MEDLINE | ID: mdl-33555911

Palliative care is an important component of pediatric cancer treatment that provides holistic support for children and their families. In low- and middle-income countries, where 98% of the children needing palliative care reside, access to palliative care services is often very limited. Training opportunities for healthcare professionals are essential to improve access to palliative care in these settings. Virtual learning, which brings training and mentorship directly to learners, can improve access to educational opportunities for staff in resource-limited settings. In this report, we describe a novel and evolving model of building pediatric palliative care (PPC) capacity in South Asia. We describe the design, implementation, challenges, and subsequent modifications of our program, as well as the impact of the program for participants and for PPC service delivery in South Asia. Our teleteaching and mentoring program (Project ECHO) [Extension for Community Healthcare Outcomes] consisted of biweekly videoconference sessions with didactic teaching and case-based discussions. The program focused on engaging participants in meaningful learning by focusing on opportunities for participant interaction through teachings and case discussions. Participants identified the program as particularly beneficial for improving their knowledge and confidence in managing seriously ill children. Project ECHO is a novel model of building PPC capacity that is suitable for resource-limited settings. Key modifications to the Project ECHO model include a course-specific leadership team, developing learning plans to address the specific learning needs of participants, focusing on ensuring learner participation during sessions, and using social media and electronic resources to create opportunities for further learning outside of ECHO sessions. These adaptations may improve the efficacy of Project ECHO and others using virtual learning programs in resource-limited settings.


Education, Distance , Hospice and Palliative Care Nursing , Asia , Child , Humans , Mentors , Palliative Care
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