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.

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.

Quality improvement in paediatric hospice and palliative care

2021 ◽  
pp. 401-409
Author(s):  
Susan Blacker ◽  
Rachel Thienprayoon
Keyword(s):  
Palliative Care ◽  
Quality Improvement ◽  
Hospice Care ◽  
Evidence Based ◽  
Children And Families ◽  
Adequate Funding ◽  
Paediatric Palliative Care ◽  
Significant Research ◽  
Barriers To Implementation ◽  
Hospice And Palliative Care

Emphasis on quality improvement (QI) can facilitate the dissemination of palliative care practices within the healthcare system. The opportunities for advancing the quality agenda in paediatric palliative care are significant. Research, evidence-based practice, and QI are necessary to transform knowledge into improved care for the unique population of children and families who receive palliative care. Barriers to implementation of QI need to be understood, and strategies need to be implemented, including ensuring adequate funding, and education, in order to provide the highest quality palliative and hospice care to children and their families.

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 Advances and Challenges in European Paediatric Palliative Care

2020 ◽  
Vol 8 (2) ◽  
pp. 20
Author(s):  
Lorna K Fraser ◽  
Myra Bluebond-Langner ◽  
Julie Ling
Keyword(s):  
Palliative Care ◽  
Epidemiological Data ◽  
Childhood Mortality ◽  
Quality Data ◽  
High Quality Data ◽  
Medical Interventions ◽  
Paediatric Palliative Care ◽  
Life Threatening ◽  
Definition Of ◽  
Limiting Condition

Advances in both public health and medical interventions have resulted in a reduction in childhood mortality worldwide over the last few decades; however, children still have life-threatening conditions that require palliative care. Children’s palliative care is a specialty that differs from palliative care for adults in many ways. This paper discusses some of the challenges, and some of the recent advances in paediatric palliative care. Developing responsive services requires good epidemiological data, as well as a clarity on services currently available and a robust definition of the group of children who would benefit from palliative care. Once a child is diagnosed with a life-limiting condition or life-limiting illness, parents face a number of complex and difficult decisions; not only about care and treatment, but also about the place of care and ultimately, place of death. The best way to address the needs of children requiring palliative care and their families is complex and requires further research and the routine collection of high-quality data. Although research in children’s palliative care has dramatically increased, there is still a dearth of evidence on key components of palliative care notably decision making, communication and pain and symptom management specifically as it relates to children. This evidence is required in order to ensure that the care that these children and their families require is delivered.

Care of children with advanced illness

2021 ◽  
pp. 1035-1045
Author(s):  
Myra Bluebond-Langner ◽  
Richard W. Langner ◽  
Ignasi Clemente
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Advanced Illness ◽  
Illness Trajectory ◽  
Paediatric Palliative Care ◽  
Life Threatening ◽  
Decision Making Processes ◽  
Care And Treatment ◽  
Parent Child

Based on the holistic, family-centred approach of paediatric palliative care, this chapter examines specific aspects of the clinician, parent, and child roles in the care and treatment of children and young persons with life-limiting conditions and life-threatening illnesses. In particular, it identifies communication, information, decision-making, and participation preferences of children and young persons with advanced illness and their parents. Within the clinician–parent–child triad, the chapter sets forward suggestions for clinicians on how to manage differences between a child and his or her parents, and more generally, on how to approach the communication and decision-making processes throughout a child’s or young person’s illness trajectory.

Education

2021 ◽  
pp. 390-400
Author(s):  
Fiona Rawlinson ◽  
Michelle Meiring
Keyword(s):  
Palliative Care ◽  
Adult Education ◽  
Mass Media ◽  
Teaching Strategies ◽  
Palliative Medicine ◽  
Healthcare Professionals ◽  
Policy Makers ◽  
Paediatric Palliative Care ◽  
Educational Initiatives ◽  
Education Theory

While education of specialists in paediatric palliative care (PC) and palliative medicine remains an important priority, it is also imperative to upscale education efforts for other healthcare professionals, policy makers, and governments in order to integrate PC into the care of an estimated 21 million children globally. PC education should be available to all child-focused healthcare professionals and beyond in order to correct misconceptions that threaten to impede delivery of adequate PC to children. That can be done through advocacy and through mass media, as well as through targeted educational initiatives based on an understanding of adult education theory. Novel online and other teaching strategies offer the opportunity to reach unprecedented numbers of people.

Paediatric palliative care

2019 ◽  
pp. 477-536
Keyword(s):  
Palliative Care ◽  
Patient Population ◽  
Palliative Medicine ◽  
Survival Rates ◽  
Care Needs ◽  
Paediatric Palliative Care ◽  
Adult World ◽  
Life Threatening ◽  
Palliative Care Needs

This chapter describes the emergence of the field of paediatric palliative care. It looks at the differences between children’s palliative care and the adult world. It goes on to discuss the management of various symptoms looking particularly at the pharmacological approaches that can be used. All dosages are aligned with the Association of Paediatric Palliative Medicine formulary guidelines. Advances in the treatment of life-threatening neonatal and paediatric conditions have dramatically improved survival rates over recent years. One of the most striking reductions in mortality has been achieved for children with malignant conditions, although there remain certain forms of cancer for which the prognosis remains extremely poor. Similarly, despite advances, there is a range of non-malignant conditions which continue to be life-limiting. The patient population in paediatric palliative care is quite different from that encountered in adult practice. Approximately 25–30% of children with palliative care needs have a malignancy.

scholarly journals Long-term nurse–parent relationships in paediatric palliative care: a narrative literature review

2019 ◽  
Vol 25 (11) ◽  
pp. 542-550 ◽  
Author(s):  
Mandy J Brimble ◽  
Sally Anstey ◽  
Jane Davies
Keyword(s):  
Palliative Care ◽  
Literature Review ◽  
Emotional Support ◽  
Healthcare Professionals ◽  
Grey Literature ◽  
Paediatric Palliative Care ◽  
The Face ◽  
Narrative Literature ◽  
Narrative Literature Review

Background: Paediatric palliative care (PPC) is an active, total approach to the holistic care of the child and family. Close, long-lasting relationships between healthcare professionals and parents in paediatric palliative care enhance quality, provide emotional support and can influence how parents manage their role in the face of uncertainty. Aim: To present a narrative literature review of long-term relationships between children's nurses and parents in PPC settings. Methods: Six databases (CINAHL, PsycINFO, ASSIA, Scopus, Medline and BNI) were searched, identifying 35 articles. A grey literature search produced seven additional relevant items. Findings: Four themes were identified: bonds; attachments and trust; sharing the journey; going the extra mile; and boundaries and integrity. All themes revealed an element of tension between closeness and professionalism. Conclusion: Gaining a greater understanding of how closeness and professionalism are successfully managed by children's palliative care nurses could positively influence pre- and post-registration nurse education.

scholarly journals Care for critically and terminally ill patients and moral distress of physicians and nurses in tertiary hospitals in South Korea: A qualitative study

PLoS ONE ◽  
2021 ◽  
Vol 16 (12) ◽  
pp. e0260343
Author(s):  
Jiyeon Kang ◽  
Eun Kyung Choi ◽  
Minjeong Seo ◽  
Grace S. Ahn ◽  
Hye Youn Park ◽  
...  
Keyword(s):  
Palliative Care ◽  
South Korea ◽  
Terminal Care ◽  
Healthcare Professionals ◽  
Moral Distress ◽  
Terminally Ill ◽  
Terminally Ill Patients ◽  
Clinical Culture ◽  
Tertiary Hospitals ◽  
Life Threatening

Physicians and nurses working in acute care settings, such as tertiary hospitals, are involved in various stages of critical and terminal care, ranging from diagnosis of life-threatening diseases to care for the dying. It is well known that critical and terminal care causes moral distress to healthcare professionals. This study aimed to explore moral distress in critical and terminal care in acute hospital settings by analyzing the experiences of physicians and nurses from various departments. Semi-structured in-depth interviews were conducted in two tertiary hospitals in South Korea. The collected data were analyzed using grounded theory. A total of 22 physicians and nurses who had experienced moral difficulties regarding critical and terminal care were recruited via purposive maximum variation sampling, and 21 reported moral distress. The following points were what participants believed to be right for the patients: minimizing meaningless interventions during the terminal stage, letting patients know of their poor prognosis, saving lives, offering palliative care, and providing care with compassion. However, family dominance, hierarchy, the clinical culture of avoiding the discussion of death, lack of support for the surviving patients, and intensive workload challenged what the participants were pursuing and frustrated them. As a result, the participants experienced stress, lack of enthusiasm, guilt, depression, and skepticism. This study revealed that healthcare professionals working in tertiary hospitals in South Korea experienced moral distress when taking care of critically and terminally ill patients, in similar ways to the medical staff working in other settings. On the other hand, the present study uniquely identified that the aspects of saving lives and the necessity of palliative care were reported as those valued by healthcare professionals. This study contributes to the literature by adding data collected from two tertiary hospitals in South Korea.

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