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 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.

Research in children’s palliative care

2021 ◽  
pp. 410-418
Author(s):  
Harold Siden ◽  
Kimberley Widger
Keyword(s):  
Palliative Care ◽  
Healthcare Professionals ◽  
Evidence Based ◽  
Children And Families ◽  
Paediatric Palliative Care ◽  
Rigorous Research ◽  
Life Threatening ◽  
Conducting Research

In this chapter, we outline why research in paediatric palliative care (PPC) is essential, describe the challenges to conducting research in children and families affected by life-threatening conditions (LTCs), and propose strategies for overcoming these obstacles in order to advance the field and ensure provision of optimal and scientifically sound care for our patients and their loved ones. The significant challenges to PPC research outlined in this chapter are daunting but not insurmountable. All healthcare professionals are encouraged to engage in or support systematic, rigorous research efforts to develop a more evidence-based approach to PPC.

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.

Facing Dementia: Integrating Palliation Into All Aspects of Care

2013 ◽  
Vol 19 (1) ◽  
pp. 12-15
Author(s):  
Allison S. Kostrzewa
Keyword(s):  
Public Health ◽  
Palliative Care ◽  
Paradigm Shift ◽  
Early Initiation ◽  
Health Concern ◽  
Aggressive Treatment ◽  
Public Health Concern ◽  
Care Services ◽  
Palliative Care Services ◽  
End Stage

Dementia is fast becoming a serious public health concern. The lack of understanding of the terminal nature of dementia frequently results in overly aggressive treatment during the end stage of the disease. Nurses need to recognize and encourage a paradigm shift in the way dementia is perceived and treated, including promoting early initiation of palliative care services.

scholarly journals About the Conditions, Issues and Problems of Children Palliative Care Using the Example of the Children’s Hospice Activity in Saint Petersburg

2021 ◽  
Author(s):  
Anatoly S. Simakhodsky ◽  
Alexander E. Tkachenko ◽  
Irina V. Kushnareva ◽  
Lyudmila D. Sevostya’nova
Keyword(s):  
Palliative Care ◽  
Service Development ◽  
Staffing Level ◽  
Saint Petersburg ◽  
Number Of Children ◽  
Patients With Cancer ◽  
Number Of Patients ◽  
Genetically Determined ◽  
Volume Forms ◽  
Neurological Pathology

The topicality of reforming the children palliative care (CPC) system due to the increase of the number of patients with cancer, congenital disorders, neurological damages, injuries consequences, genetically determined pathologies is discussed. The patterns of CPC service development, the importance to track those in need, to determine the required volume, forms, and methods of palliative care, and to develop human capacity were analyzed. The results of “Children's Hospice” (Saint Petersburg) activities in 2014–2019 years are presented alongside with the data on CPC development in Russia. This example shows the advantages of clear routing, establishment of indications for patients’ hospitalization, and availability of high-technology medical care and medications. All innovations have led to the significant change in medical conditions structure (over 80% of patients are children with neurological pathology), to the decrease in the number of hospitalizations, to the increase in the number of children who can get required respiratory support at home. The issues of high employees’ turnover and low staffing level in CPC institutions are discussed.

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.

Use of Acupuncture in Hospices and Palliative Care Services in the Uk

2013 ◽  
Vol 31 (1) ◽  
pp. 16-22 ◽  
Author(s):  
Graham Leng
Keyword(s):  
Palliative Care ◽  
Healthcare Professionals ◽  
Response Rate ◽  
Evidence Base ◽  
Specialist Palliative Care ◽  
Online Questionnaire ◽  
Care Services ◽  
Palliative Care Services ◽  
Potential Benefits ◽  
The Uk

Purpose The aim of the present work was to evaluate the availability of acupuncture in UK hospices and specialist palliative care services and to identify any barriers to the use of acupuncture in these settings, to determine the characteristics of available acupuncture services and of practitioners providing acupuncture, and to determine awareness of the evidence base for the use of acupuncture in palliative care. Methods An online questionnaire with an invitation to participate was circulated by email to 263 hospices and specialist palliative care services in the UK. Results A response rate of 54% was obtained. Acupuncture was provided by 59% of services that responded. In general, small numbers of patients receive acupuncture as part of their palliative care treatment as inpatients, day patients or outpatients. Most practitioners were regulated health professionals who had received a Western-style training in acupuncture and used a Western-style medical acupuncture approach. Where acupuncture was not available the commonest reason given was the lack of a suitable practitioner. Most agreed that if funding and a suitable practitioner were available, acupuncture would be a useful addition to their service. The level of awareness of specific types of evidence supporting the use of acupuncture in palliative care was low, but most respondents were aware that some evidence existed. Conclusions There is a need to increase training in acupuncture for healthcare professionals working in palliative care. There is also a need to raise awareness of the potential benefits to patients and the evidence base supporting the use of acupuncture in palliative care.

What’s in a name? A qualitative exploration of what is understood by “palliative care” in the emergency department

2015 ◽  
Vol 29 (4) ◽  
pp. 293-301 ◽  
Author(s):  
Jennifer Weil ◽  
Tracey J Weiland ◽  
Heather Lane ◽  
George A Jelinek ◽  
Mark Boughey ◽  
...  
Keyword(s):  
Emergency Department ◽  
Palliative Care ◽  
Focus Groups ◽  
Advanced Cancer ◽  
Emergency Departments ◽  
Healthcare Professionals ◽  
Emergency Physicians ◽  
Emergency Nurses ◽  
Telephone Interviews ◽  
Palliative Care Services

Background: The understanding of what palliative care is, and which patients may benefit from palliative care, has important implications for optimal patient care in all areas of health provision. Aim: To explore the understanding of palliative care by healthcare professionals caring for patients with advanced cancer attending emergency departments. Design: Qualitative study, with two phases: the first, a series of focus groups with healthcare professionals from various disciplines and settings caring for patients with advanced cancer presenting to emergency departments; the second, semi-structured telephone interviews with emergency healthcare professionals across Australian States and Territories, including outside metropolitan centers. The data were audio-recorded and transcribed, with analysis undertaken using a qualitative thematic analysis. Setting/participants: Saturation of themes was reached after 8 focus groups (22 emergency nurses, 21 emergency physicians, 6 oncologists, 6 hospital palliative care clinicians, and 28 community palliative care clinicians) and 11 telephone interviews (8 emergency physicians and 3 emergency nurses), a total of 94 participants. Results: The overarching theme was that healthcare professionals held contradictory understandings of palliative care and its application in the emergency department; subthemes highlighted these inconsistencies when the term “palliative” is used, in understandings of and engagement with palliative care services and in perceptions about the practical utility of palliative care. Conclusion: There are entrenched contradictions and tensions surrounding the term “palliative care”; confronting these is likely to require more than re-branding, and will promote better care for this vulnerable patient group in the emergency department.

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