scholarly journals Challenges of paediatric palliative care in Romania: a focus groups study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Nadia Pacurari ◽  
Eva De Clercq ◽  
Monica Dragomir ◽  
Anca Colita ◽  
Tenzin Wangmo ◽  
...  
Keyword(s):  
Palliative Care ◽  
Focus Groups ◽  
Healthcare Professionals ◽  
Paediatric Oncology ◽  
Pediatric Palliative Care ◽  
Charitable Organizations ◽  
Number Of Children ◽  
Care Services ◽  
Paediatric Palliative Care ◽  
Palliative Care Services

Abstract Background The availability of palliative care facilities for children vary considerably among the European member states. In Romania, a country where health expenditure is among the lowest in Europe, palliative care has been mainly provided by charitable organizations. Despite the high number of children needing palliative care, there is scant literature and research available on paediatric palliative care in Romania. The study explores the viewpoints of various paediatric oncology providers with regard to paediatric palliative care provision in Romania. Methods Four mixed focus groups were conducted at four university-affiliated paediatric oncology centres located in three distinct Romanian regions (Bucuresti-llfov, Nord-Est and Nord-Vest). The focus groups were analyzed using thematic coding. Results For many healthcare professionals, emotional burden inherent to the profession; unhealthy work-life balance and understaffing were among the biggest barriers to the successful integration of pediatric palliative care. The lack of staff was attributed to a shortage of financial resources, and to the persisting cultural stigma surrounding palliative care and oncology. Also political turmoil was identified as an important obstacle to palliative care implementation. Conclusion Significant barriers persist limiting the broader implementation of pediatric palliative care in Romania. In order to render palliative care in pediatric oncology more sustainable, more attention should be paid to the mental health care of healthcare professionals working in this field, to the development of mobile palliative care services and to the emigration of skilled medical staff.

Facilitators and barriers to the delivery of palliative care to children with life-limiting and life-threatening conditions: a qualitative study of the experiences and perceptions of healthcare professionals

2021 ◽  
pp. archdischild-2021-321808
Author(s):  
Sarah Mitchell ◽  
Anne-Marie Slowther ◽  
Jane Coad ◽  
Sophie Bertaud ◽  
Jeremy Dale
Keyword(s):  
Palliative Care ◽  
Focus Groups ◽  
Healthcare Professionals ◽  
Clinical Uncertainty ◽  
Care Services ◽  
Paediatric Palliative Care ◽  
Palliative Care Teams ◽  
Palliative Care Services ◽  
Life Threatening ◽  
Facilitators And Barriers

ObjectiveTo understand healthcare system facilitators and barriers to the delivery of palliative care for children with life-limiting and life-threatening conditions and their family members.DesignFocus groups with children’s palliative care professionals. Data were analysed using thematic analysis.SettingFour regions of England (West Midlands, South West, Yorkshire and Humber, and London) from December 2017 to June 2018.ParticipantsHealthcare professionals (doctors, nurses and allied healthcare professionals) working in children’s palliative care services.FindingsA total of 71 healthcare professionals participated in the focus groups. Three overarching themes were identified which influenced whether and when children were referred to and started to receive palliative care: (1) the unspoken background of clinical uncertainty which often delayed palliative care; (2) the cultural ‘collusion of immortality’, where conversations about the possibility of dying can be avoided or deferred; and (3) the role of paediatric palliative care teams in ‘illuminating the blind spot’ of palliative care as well as providing hands-on care.ConclusionsPalliative care is a holistic approach to care that focuses on quality of life for people living with life-limiting and life-threatening conditions that can be delivered alongside active treatment. There is a need to prioritise and integrate this into healthcare services for children more effectively if improvements in care are to be realised. While more specialist paediatric palliative care services are needed, the unspoken background of clinical uncertainty needs to be addressed together with the collusion of immortality within healthcare culture and organisations.

scholarly journals 69 Exploring learners’ perspectives of a pediatric palliative care tele-mentoring and education program (project ECHO) in a resource-limited setting

2020 ◽  
Vol 25 (Supplement_2) ◽  
pp. e29-e29
Author(s):  
Emily Evans ◽  
Megan Doherty ◽  
Shokoufeh Modanloo ◽  
Jennifer Rowe ◽  
Dennis Newhook ◽  
...  
Keyword(s):  
Palliative Care ◽  
Focus Groups ◽  
South Asia ◽  
Healthcare Professionals ◽  
Pediatric Palliative Care ◽  
Learning Resources ◽  
Resource Limited Settings ◽  
Project Echo ◽  
Resource Limited ◽  
One Year

Abstract Introduction/Background More than 98% of children who need palliative care live in low- or middle-income countries where access to palliative care is extremely limited. A lack of palliative care education for health care providers has been identified as a significant barrier to improving access to palliative care. Project ECHO (Extension of Community Healthcare Outcomes) is an online tele-mentoring educational platform developed to improve access to specialist care in these underserved areas. From 2018 to 2019, we piloted a one-year Project ECHO program which provided pediatric palliative care training for healthcare professionals mainly within India and surrounding South Asian countries. Objectives The objective of this study was to explore the learning experiences of participants in a Project ECHO on pediatric palliative care in South Asia and explore considerations to improve ECHO to cater to the unique learning needs and challenges for healthcare professionals in resource-limited settings. Design/Methods We implemented a one-year Project ECHO targeting healthcare providers in South Asia, which consisted of 24 bi-weekly 90-minute sessions. Learners who attended at least 20% (5 sessions) were invited to participate in focus groups. Focus groups were designed to explore participants’ experiences and the perceived strengths and weaknesses of the program. Recordings of the focus group sessions were transcribed, coded and independently verified. The codes were then arranged into overarching themes. Results Seventeen individuals from India and Bangladesh participated in four focus groups at the end of ECHO PPC. Following coding and analysis, two major themes and seven sub-themes were identified. The themes included: (1) Benefits of participation in ECHO PPC (creation of a community of practice; opportunity to exchange cultures, ideas and experiences; supportive role of the facilitator and peers; increased relevant knowledge and skills; and access to additional learning resources) and (2) Barriers to participation (difficulties with time and practice schedule management; and language and sociocultural factors). Conclusion Healthcare professionals in resource-limited settings benefit from project ECHO through the creation of a supportive, online learning community of peers where ideas, experiences and learning resources can be shared. Addressing barriers to participation may enhance the learning experience of project ECHO in the future.

scholarly journals Achieving beneficial outcomes for children with life-limiting and life-threatening conditions receiving palliative care and their families: A realist review

2019 ◽  
Vol 34 (3) ◽  
pp. 387-402 ◽  
Author(s):  
Sarah Mitchell ◽  
Karina Bennett ◽  
Andrew Morris ◽  
Anne-Marie Slowther ◽  
Jane Coad ◽  
...  
Keyword(s):  
Palliative Care ◽  
Healthcare Professionals ◽  
Realist Review ◽  
Health Concern ◽  
Service Development ◽  
Children And Families ◽  
Family Outcomes ◽  
Number Of Children ◽  
Palliative Care Services ◽  
Life Threatening

Background: Palliative care for children and young people is a growing global health concern with significant resource implications. Improved understanding of how palliative care provides benefits is necessary as the number of children with life-limiting and life-threatening conditions rises. Aim: The aim is to investigate beneficial outcomes in palliative care from the perspective of children and families and the contexts and hidden mechanisms through which these outcomes can be achieved. Design: This is a systematic realist review following the RAMESES standards. A protocol has been published in PROSPERO (registration no: CRD42018090646). Data sources: An iterative literature search was conducted over 2 years (2015–2017). Empirical research and systematic reviews about the experiences of children and families in relation to palliative care were included. Results: Sixty papers were included. Narrative synthesis and realist analysis led to the proposal of context–mechanism–outcome configurations in four conceptual areas: (1) family adaptation, (2) the child’s situation, (3) relationships with healthcare professionals and (4) access to palliative care services. The presence of two interdependent contexts, the ‘expert’ child and family and established relationships with healthcare professionals, triggers mechanisms, including advocacy and affirmation in decision-making, which lead to important outcomes including an ability to place the emphasis of care on lessening suffering. Important child and family outcomes underpin the delivery of palliative care. Conclusion: Palliative care is a complex, multifactorial intervention. This review provides in-depth understanding into important contexts in which child and family outcomes can be achieved so that they benefit from palliative care and should inform future service development and practice.

Clinicians’ perceptions of opioid error–contributing factors in inpatient palliative care services: A qualitative study

2019 ◽  
Vol 33 (4) ◽  
pp. 430-444 ◽  
Author(s):  
Nicole Heneka ◽  
Priyanka Bhattarai ◽  
Tim Shaw ◽  
Debra Rowett ◽  
Samuel Lapkin ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Focus Groups ◽  
System Level ◽  
Quality And Safety ◽  
Specialist Palliative Care ◽  
Structured Interviews ◽  
Contributing Factors ◽  
Care Services ◽  
Palliative Care Services

Background: Opioid errors are a leading cause of patient harm and adversely impact palliative care inpatients’ pain and symptom management. Yet, the factors contributing to opioid errors in palliative care are poorly understood. Identifying and better understanding the individual and system factors contributing to these errors is required to inform targeted strategies. Objectives: To explore palliative care clinicians’ perceptions of the factors contributing to opioid errors in Australian inpatient palliative care services. Design: A qualitative study using focus groups or semi-structured interviews. Settings: Three specialist palliative care inpatient services in New South Wales, Australia. Participants: Inpatient palliative care clinicians who are involved with, and/or have oversight of, the services’ opioid delivery or quality and safety processes. Methods: Deductive thematic content analysis of the qualitative data. The Yorkshire Contributory Factors Framework was applied to identify error-contributing factors. Findings: A total of 58 clinicians participated in eight focus groups and 20 semi-structured interviews. Nine key error contributory factor domains were identified, including: active failures; task characteristics of opioid preparation; clinician inexperience; sub-optimal skill mix; gaps in support from central functions; the drug preparation environment; and sub-optimal clinical communication. Conclusion: This study identified multiple system-level factors contributing to opioid errors in inpatient palliative care services. Any quality and safety initiatives targeting safe opioid delivery in specialist palliative care services needs to consider the full range of contributing factors, from individual to systems/latent factors, which promote error-causing conditions.

scholarly journals The Role of Resilience in the Sibling Experience of Pediatric Palliative Care: What Is the Theory and Evidence?

Children ◽  
2018 ◽  
Vol 5 (7) ◽  
pp. 97 ◽  
Author(s):  
Wei Chin ◽  
Tiina Jaaniste ◽  
Susan Trethewie
Keyword(s):  
Palliative Care ◽  
Family System ◽  
Pediatric Palliative Care ◽  
Future Research ◽  
Medical Conditions ◽  
Disease Trajectory ◽  
Care Services ◽  
The Family ◽  
Palliative Care Services

Siblings of children with life limiting conditions (LLC) are an important part of the broader family system and require consideration in the holistic care of the family. There can be considerable variation in the functioning and adjustment of these siblings. The current paper explores the resilience paradigm, particularly in the context of siblings of children with LLC and serious medical conditions. The potential impact of children living with a seriously ill brother or sister will be overviewed, and a range of functional outcomes considered. Factors contributing to sibling resilience are detailed, including individual, family, and broader external and social factors. Given the limited research with siblings of children with LLC, literature has also been drawn from the siblings of children with serious and/or chronic medical conditions. Implications for clinical practice and future research are considered. Pediatric palliative care services may be well placed to contribute to this body of research as they have commonly extended relationships with the families of children with LLC, which span across the child’s disease trajectory.

Emergency Department Utilisation by Palliative Patients in a Regional Australian Setting

2021 ◽  
pp. 104990912110559
Author(s):  
Ben Crock ◽  
Md Rafiqul Islam ◽  
Sivakumar Subramaniam
Keyword(s):  
Palliative Care ◽  
Healthcare Professionals ◽  
Oral Intake ◽  
Single Centre ◽  
Community Healthcare ◽  
Care Services ◽  
Primary Care Settings ◽  
Palliative Care Services ◽  
Emergency Department Utilisation ◽  
Australian Hospital

Background: Many palliative care patients attend emergency departments (EDs) in acute Hospital. However, very limited studies inform about their presentations and appropriateness. Objectives: This study explored the reasons and appropriateness of palliative care presentations in a regional Australian ED setting. Methods: A retrospective, single-centre observational study was conducted in a regional Australian hospital. All patients between January and December 2018 known to palliative care services presented to ED were included. Appropriateness of presentations was determined based on urgency of tests and treatments received, and practicability of obtaining these in a different setting. Results: A total of 35 patients made 85 presentations to the ED in 2018. The most common individual presenting complaints were shortness of breath (18.9%) followed by pain (14.1%), fever (11.8%), fall (8.2%), reduced oral intake or dehydration (8.2%), and bleeding (8.2%). The patients were brought by an ambulance in 56.5% presentations, and 63.5% presentations were admitted. About 93% presentations were referred by community healthcare professionals or required urgent investigation or management. Conclusions: This study found the majority of presentations were appropriate since their management could not be delivered at other primary care settings. This study adds value to the growing body of evidence and supports future multi-site longitudinal studies.

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