A mixed-methods systematic review and meta-analysis of barriers and facilitators to paediatric symptom management at end of life

Greenfield, Katie; Holley, Simone; Schoth, Daniel E.; Harrop, Emily; Howard, Richard; Bayliss, Julie; Brook, Lynda; Jassal, Satbir Singh; Johnson, Margaret; Wong, Ian C K; Liossi, Christina

doi:10.1177/0269216320907065

Cited by 28 publications

(30 citation statements)

References 71 publications

(177 reference statements)

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“…Most of the articles that met inclusion criteria for this review employed a qualitative, mixed methods, or review design ( n = 53; 79.1%; see Table 2); only 14 of the included articles used quantitative methodologies (20.9%; see Table 3). Although most systematic reviews restrict article inclusion to quantitative reports, this review included qualitative, mixed method, and review evidence as well, similar to prior works by Greenfield and colleagues 23 and van Dongen and colleagues. 24 Thus, it was necessary to incorporate different evidence appraisal systems based on these differing data collection, analysis, and reporting paradigms.…”

Section: Resultsmentioning

confidence: 99%

Legacy perceptions and interventions for adults and children receiving palliative care: A systematic review

Boles

Jones

2021

Palliat Med

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Background: Legacy has been invoked as a means for strengthening human attachments, continuing bonds, and ensuring that individuals will be remembered; however, little is known about the spectrum of approaches to, outcomes associated with, and best practices for legacy interventions. Aim: To systematically review research on legacy perceptions and interventions in pediatric and adult palliative care recipients. Design: A systematic mixed studies review synthesizing quantitative, qualitative, and mixed-methods study findings using PRISMA guidelines. Data sources: PubMed, PsycINFO, and CINAHL databases were searched on October 1, 2020. GRADE criteria were used to assess quality of quantitative reports, and the Johns Hopkins Evidence Level and Quality Guide was used to rate qualitative, mixed methods, and review articles. Data were synthesized using integrative thematic analysis. Results: The 67 studies reviewed describe a variety of legacy perceptions and interventions with adult and pediatric patients receiving palliative care. Statistically significant improvements in various dimensions of wellbeing are documented, with significant reduction in incidence and symptoms of depression in adults. Studies highlight the utility, feasibility, and perceived benefits of legacy interventions according to adult patients and their caregivers, and parents/caregivers of pediatric patients. Conclusions: Though future research with high-quality, experimental designs is needed, the positive outcomes associated with legacy interventions are documented in adult patient populations; additionally, the application of legacy interventions for children with serious illnesses receiving palliative care is reasonable based on the existing body of evidence. A consistent and operational concept of legacy is still needed for future research and practice.

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Section: Resultsmentioning

confidence: 99%

Legacy perceptions and interventions for adults and children receiving palliative care: A systematic review

Boles

Jones

2021

Palliat Med

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“…Referral to palliative care in paediatric cancer settings improved communication between families and health care providers [74,75,119,[125][126][127][128][129][130][131][132]. Involvement of the palliative care team enabled early assessment [133]; facilitated initiation of family meetings during the child's clinical deterioration [128] and assisted oncologists in prognostic discussions [74]. Palliative care teams participated in family communications during the discussion of end-of-life care [75,129,130], and helped paediatric oncologists to navigate critical communications surrounding the child's end of life [130].…”

Section: Outcomes Of Palliative Care Referral In Paediatric Oncologymentioning

confidence: 99%

Palliative Care in Paediatric Oncology: an Update

2022

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Purpose of this Review The purpose of this review is to describe the evolution of palliative care in paediatric oncology, the needs of children and their families in a paediatric oncology setting, palliative care referral practices in paediatric oncology, outcomes of palliative care referral in paediatric oncology and models of palliative care in paediatric oncology. Recent Findings Cancer constitutes 5.2% of the palliative care needs in children. Approximately, 90% of children with cancer lives in low and middle-income countries, constituting 84% of the global burden of childhood cancers. Children in low and middle-income countries have low cure rates and high death rates making palliative care relevant in a paediatric oncology setting. Children with cancer experience pain and physical symptoms, low mood, anxiety, and fear. They feel less resilient, experience low self-worth, and have challenges coping with the illness. The families lead very stressful lives, navigating the hospital environment, and dealing with uncertainties of the future. Palliative care referral in children with cancer improves physical symptoms, emotional support, and quality of life. It enables communication between families and health care providers. It improves end-of-life care support to children and their families and facilitates less invasive diagnostic and therapeutic interventions at the end of life. Worldwide children with cancer are infrequently referred to palliative care and referred late in the illness trajectory. Most of the children referred to palliative care receive some form of cancer-directed therapy in their last days. Children in low and low-middle income countries are less likely to access palliative care due to a lack of awareness amongst paediatric oncologists about palliative care and the reduced number of services providing palliative care. A three-tier model is proposed to provide palliative care in paediatric oncology, where most children with palliative care needs are managed by paediatric oncologists and a smaller number with complex physical and psychosocial needs are managed by paediatric palliative care specialists. There are several palliative care models in paediatric oncology practised globally. However, no one model was considered better or superior, and the choice of model depended on the need, preferences identified, and available resources. Summary Children with cancer are sparingly referred to palliative care and referred late and oncologists and haematologists gatekeep the referral process. Knowledge on palliative care referral in paediatric oncology settings might enhance collaboration between paediatric oncology and paediatric palliative care.

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“…Once these signs emerge, it is imperative for providers to increase their presence for facilitating additional symptom management and continuing education and psychosocial support for families. Often families are fearful of providing comfort medication as they fear it will hasten death [ 66 ]. Guidance from PPC or hospice providers can reassure families regarding the use of medication for appropriate pain and symptom management.…”

Section: Grief Around the Time Of Deathmentioning

confidence: 99%

Current Grief Support in Pediatric Palliative Care

et al. 2021

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Grief support changes as more is learned from current grief theory and research. The authors provide a comprehensive overview of current grief support as it relates to Pediatric Palliative Care (PPC). The following aspects of grief are addressed: (1) anticipatory grief: the nondeath losses that occur with a complex and chronic illness, as well as the time leading up to death; (2) grief around the time of death: the intense and sacred experience of companioning with a dying child; (3) grief after death: supporting bereavement and mourning through programing and other methods; (4) innovative approaches: the future of grief support. The contents of this article are meant to support and educate programs currently providing grief services and those aiming to begin the meaningful work of grief support.

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A mixed-methods systematic review and meta-analysis of barriers and facilitators to paediatric symptom management at end of life

Cited by 28 publications

References 71 publications

Legacy perceptions and interventions for adults and children receiving palliative care: A systematic review

Legacy perceptions and interventions for adults and children receiving palliative care: A systematic review

Palliative Care in Paediatric Oncology: an Update

Current Grief Support in Pediatric Palliative Care

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