Pediatric palliative care in Canada in 2012: a cross-sectional descriptive study

Widger, Kimberley; Davies, Dawn; Rapoport, Adam; Vadeboncoeur, Christina; Liben, Stephen; Sarpal, Amrita; Stenekes, Simone; Cyr, Claude; Daoust, Lysanne; Grégoire, Marie‐Claude; Robertson, Marli; Hodgson‐Viden, Heather; Laflamme, Julie; Siden, Harold

doi:10.9778/cmajo.20160054

Cited by 45 publications

(32 citation statements)

References 22 publications

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“…17,19,20 Even within the developed world, the availability, referral and uptake of specialist palliative care among children and young people with cancer remains low and variable between and within countries and settings, and it is not clear to what extent these services are addressing all aspects of palliative care as defined by WHO. 17,[21][22][23][24][25] For children with cancer, referral to palliative care also often occurs late in the trajectory of illness, sometimes only days before death. 26,27 Recent systematic reviews suggest that access to specialist palliative care services is associated with improvements in quality of life, symptom control, perceived support, reduced time in hospital, less invasive treatment and greater advance care planning.…”

Section: Introductionmentioning

confidence: 99%

Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

et al. 2020

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Background: Specialist paediatric palliative care services are promoted as an important component of palliative care provision, but there is uncertainty about their role for children with cancer. Aim: To examine the impact of specialist paediatric palliative care for children and young people with cancer and explore factors affecting access. Design: A mixed-methods systematic review and narrative synthesis (PROSPERO Registration No. CRD42017064874). Data sources: Database (CINAHL, Cochrane Database of Systematic Reviews, Embase, MEDLINE, PsycINFO) searches (2000–2019) identified primary studies of any design exploring the impact of and/or factors affecting access to specialist paediatric palliative care. Study quality was assessed using The Mixed Methods Appraisal Tool. Results: An evidence base of mainly low- and moderate-quality studies ( n = 42) shows that accessing specialist paediatric palliative care is associated with less intensive care at the end of life, more advance care planning and fewer in-hospital deaths. Current evidence cannot tell us whether these services improve children’s symptom burden or quality of life. Nine studies reporting provider or family views identified uncertainties about what specialist paediatric palliative care offers, concerns about involving a new team, association of palliative care with end of life and indecision about when to introduce palliative care as important barriers to access. There was evidence that children with haematological malignancies are less likely to access these services. Conclusion: Current evidence suggests that children and young people with cancer receiving specialist palliative care are cared for differently. However, little is understood about children’s views, and research is needed to determine whether specialist input improves quality of life.

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Section: Introductionmentioning

confidence: 99%

Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

et al. 2020

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“…Additional work is needed to track the cost and use of specialist PPC services and hospices at a population level because the availability of these services and facilities continues to grow in Canada. 31 Our findings are potentially generalizable to other countries with similar health systems (eg, England and Norway); however, differences in end-of-life care practices have been demonstrated across developed countries. 32 Due to a lack of health card numbers to facilitate linkages across databases, we excluded 2463 infants <1 month of age from our analysis.…”

Section: Tablementioning

confidence: 52%

Children’s End-of-Life Health Care Use and Cost

et al. 2017

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“…International research indicates that not all children who might benefit from PPC receive it. Reported PPC referral rates for children who died after any life-threatening condition vary widely across countries and institutions, with reported rates ranging from 8% to 39% [ 75 , 76 , 77 , 78 , 79 , 80 ]. Among children with cancer, rates tend to be higher, with a 63% referral rate reported in one Canadian study [ 80 ].…”

Section: How Do We Monitor For Inequities In the Provision Of Ppc?mentioning

confidence: 99%

Emerging Methodologies in Pediatric Palliative Care Research: Six Case Studies

et al. 2018

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Given the broad focus of pediatric palliative care (PPC) on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This manuscript, written by experienced PPC researchers, describes issues encountered in our own areas of research and the novel methods we have identified to target them. Specifically, we discuss potential approaches to: assessing symptoms among nonverbal children, evaluating medical interventions, identifying and treating problems related to polypharmacy, addressing missing data in longitudinal studies, evaluating longer-term efficacy of PPC interventions, and monitoring for inequities in PPC service delivery.

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Pediatric palliative care in Canada in 2012: a cross-sectional descriptive study

Cited by 45 publications

References 22 publications

Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

Children’s End-of-Life Health Care Use and Cost

Emerging Methodologies in Pediatric Palliative Care Research: Six Case Studies

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