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 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.

scholarly journals Interstitial lung disease and specialist palliative care access: a healthcare professionals survey

2020 ◽  
pp. bmjspcare-2019-002148
Author(s):  
Jee Whang Kim ◽  
Sandra Olive ◽  
Steve Jones ◽  
Muhunthan Thillai ◽  
Anne-Marie Russell ◽  
...  
Keyword(s):  
Palliative Care ◽  
Interstitial Lung Disease ◽  
Lung Disease ◽  
Healthcare Professionals ◽  
Symptom Control ◽  
Survey Study ◽  
Specialist Palliative Care ◽  
Care Services ◽  
Palliative Care Teams ◽  
Palliative Care Services

BackgroundFibrotic interstitial lung disease is an incurable disease with poor prognosis. We aimed to understand factors affecting decisions regarding referrals to specialist palliative care services and to address barriers and facilitators to referrals from healthcare professionals’ perspectives.MethodsA survey study of healthcare professionals, including respiratory physicians, interstitial lung disease nurse specialists, respiratory nurse specialists and palliative care physicians, was conducted using a questionnaire, entailing 17 questions.ResultsThirty-six respondents, including 15 interstitial lung disease nurse specialists completed the questionnaire. Symptom control, psychological/spiritual support, general deterioration and end-of-life care were the most common reasons for referrals to specialist palliative care services. Most respondents felt confident in addressing palliative care needs and discussing palliative care with patients. A few participants emphasised that experienced respiratory nurse specialists are well placed to provide symptom management and to ensure continuity of patient care. Participants reported that access to palliative care could be improved by increasing collaborative work between respiratory and palliative care teams.ConclusionsMost respondents felt that enhancing access to specialist palliative care services would benefit patients. However, palliative care and respiratory care should not be considered as mutually exclusive and multidisciplinary approach is recommended.

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.

scholarly journals ‘Necessity is the mother of invention’: Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multi-national survey (CovPall)

2020 ◽  
Author(s):  
Lesley Dunleavy ◽  
Nancy Preston ◽  
Sabrina Bajwah ◽  
Andy Bradshaw ◽  
Rachel Cripps ◽  
...  
Keyword(s):  
Palliative Care ◽  
Resource Use ◽  
System Response ◽  
List Type ◽  
Specialist Palliative Care ◽  
It Infrastructure ◽  
Care Services ◽  
Palliative Care Teams ◽  
Palliative Care Services ◽  
Palliative Care Units

AbstractBackgroundSpecialist palliative care services have a key role in a whole system response to COVID-19. There is a need to understand service response to share good practice and prepare for future care.AimTo map and understand specialist palliative care services innovations and practice changes in response to COVID-19 (CovPall).DesignOnline survey of specialist palliative care providers, disseminated via key stakeholders. Data collected on service characteristics, innovations and changes in response to COVID-19. Statistical analysis included frequencies, proportions and means, and free-text comments were analysed using a qualitative framework approach.Setting/participantsInpatient palliative care units, home nursing services, hospital and home palliative care teams from any country.Results458 respondents: 277 UK, 85 Europe (except UK), 95 World (except UK and Europe), 1 missing country. 54.8% provided care across 2+ settings; 47.4% hospital palliative care teams, 57% in-patient palliative care units, and 57% home palliative care teams. The crisis context meant services implemented rapid changes. Changes involved streamlining, extending and increasing outreach of services, using technology to facilitate communication, and implementing staff wellbeing innovations. Barriers included; fear and anxiety, duplication of effort, information overload, funding, and IT infrastructure issues. Enablers included; collaborative teamwork, pooling of staffing resources, staff flexibility, a pre-existing IT infrastructure and strong leadership.ConclusionsSpecialist palliative care services have been flexible, highly adaptive and have adopted a ‘frugal innovation’ model in response to COVID-19. In addition to financial support, greater collaboration is essential to minimise duplication of effort and optimise resource use.ISRCTN16561225https://doi.org/10.1186/ISRCTN16561225Key StatementsWhat is already known about the topic?Specialist palliative care is part of a whole healthcare system response to COVID-19.Services need to make practice changes in response to the global pandemic.What this paper addsSpecialist palliative care services responded rapidly to COVID-19 in both planning for change and then adapting to needs and requirements.Services often relied on ‘improvisation’, ‘quick fixes’ and ‘making do’ when responding to the COVID-19 crisis.Implications for practice, theory or policyIn addition to financial support, greater collaboration is essential to build organisational resilience and drive forward innovation, by minimising duplication of effort and optimising resource use.The effectiveness and sustainability of any changes made during the crisis needs further evaluation.

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.

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.

Palliative care

2019 ◽  
pp. 865-872
Author(s):  
Joseph O’Neill
Keyword(s):  
Palliative Care ◽  
Key Management ◽  
Low Resource ◽  
Care Services ◽  
Life Threatening Illness ◽  
Humanitarian Crises ◽  
Palliative Care Services ◽  
Life Threatening

This chapter covers a fundamentally important and often overlooked area of medicine, and outlines how even in humanitarian crises palliative care principles should be applied to relieve suffering for those with life-threatening illness. As not all humanitarian situations allow comprehensive textbook palliative care services for all patients, this chapter provides the underlying principles of palliation, implementation in low-resource environments, and key management components to allow adoption in varying contexts.

Hospital-Based Palliative Care with Medicare Claims: Evidence From Colorado

2017 ◽  
Vol 35 (1) ◽  
pp. 66-68 ◽  
Author(s):  
Cordt T. Kassner ◽  
Nrupen A. Bhavsar ◽  
Matthew Harker ◽  
Janet Bull ◽  
Donald H. Taylor
Keyword(s):  
Palliative Care ◽  
Medicare Claims ◽  
Care Services ◽  
Medicare Data ◽  
Phone Survey ◽  
Number Of Patients ◽  
Palliative Care Teams ◽  
Palliative Care Services ◽  
Study Setting ◽  
Medicare Claims Data

Background: The prevalence of hospital-based palliative care has been largely anecdotal as an increasing service being provided and there is a need to understand what trends can be analyzed with Medicare data. Objective: To compare 2 methods of identifying hospital-based palliative care in the Medicare population in Colorado. Study Design: Through Medicare claims data and phone surveys, we ascertained the presence of hospital-based palliative care services, number of patients receiving palliative care, and number of care visits provided during the previous year. Data Sources/Study Setting: Data were collected from every Medicare-certified hospital in Colorado during 2008 and 2013. Measurements: We measured the presence of hospital-based palliative care teams and their average number of consultations through a phone survey and cross-referenced using a v-code modifier of Medicare claims indicating a palliative care consult visit. Results: The number of hospital-based palliative care consultations increased five-fold from 2008-2013, and Medicare claims under-counted the number of these consultations compared to phone surveys. Conclusion: The systematic measurement of palliative care nationally is a key priority. More evidence is needed from other states to better understand the usefulness of Medicare claims in this effort.

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