Knowledge, Beliefs, and Behaviors Related to Palliative Care Delivery Among Pediatric Oncology Health Care Providers

Abstract

The care of pediatric patients with cancer and their families is complex and rapidly evolving. Despite significant advances in outcomes, symptoms of the disease and complications of therapy continue to cause suffering that may improve with the involvement of pediatric palliative care (PPC) services. This descriptive study responds to the observation of great variability in PPC utilization within pediatric oncology. Data collected from 156 health care professionals (nurses, advanced practice professionals, and physicians) from a statewide hematology alliance evaluates the knowledge, beliefs, and perceived barriers to PPC involvement. Data analysis reveals significant variability when comparing respondents from professional roles and practice environments. Despite progress in PPC availability, care delivery remains incongruent with current recommendations. Knowledge gained from this study emphasizes the important role for all health care providers in advocating for support of PPC programs, educating the public, and committing to intentional involvement of PPC services while caring for pediatric oncology patients.

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

“…Of the 42 included studies, 11 examined the impact of specialist paediatric palliative care, 44,48,57,58,62,64,66,70,73,74,88 14 explored factors affecting access 23,43,45,56,65,68,71,75,76,[78][79][80][81][82][83]89 and 17 studies investigated both 46,47,[49][50][51][52][53][54][55][59][60][61]63,67,69,72,77,[84][85][86][87]90 (see Table 1 for study characteristics). Using the MMAT, 25 studies were categorised as quantitative non-randomised, 12 as quantitative descriptive and 5 as qualitative stud...…”

“…Thirty-one studies (all quantitative) examined the impact of and/or characteristics of children receiving specialist palliative care; 24 included a comparator group of children not receiving this, 23,43-51,54-64,78,86-88, 90 1 compared children receiving late and early specialist input, 52,53,84,85 and 6 used a single-group study design. 66,67,69,70,73,74 Of the remaining 11 studies (6 quantitative and 5 qualitative), 10 explored the views of healthcare staff 65,71,72,[75][76][77][79][80][81][82][83]89 and 1 the views of parents and young people. 68 Of the 31 studies examining outcomes and/or characteristics of children, the majority (n = 21) drew their sample of children and young people from a single centre.…”

“…Three studies referred to palliative care consultation only, 43,54,78 and three a palliative care team, 68,79,81 although it is likely that these were all referring to hospital-based teams. Of the remaining four studies, three included a range of models 71,72,89 and one referred to specialist paediatric palliative care explicitly but did not define this. 76 Very few studies provided specific details about the team or service providing palliative care in terms of skills mix, role and the extent of provision.…”

“…There were concerns about the representativeness of samples in 14 of the quantitative studies, due to the single-site design of many studies, long study period and inappropriate participant selection or recruitment methods. 44,46,[48][49][50][51]54,57,61,62,64,70,72,86,89 Assessment of representativeness was not possible in another seven studies because of poor reporting. 66,68,73,78,81,89,90 In eight studies, there were concerns about the comparability of groups (e.g.…”

“…[45][46][47]49,50,53,59,61,78,85 There was mixed evidence about whether a child's age, 47,49,50,53,55,61,63,78 or the socioeconomic status of their family (e.g. deprivation, education), 47,50,59,63,71,87,89 influenced access. Only one or two studies investigated language, 46,59 rurality, 55,63 religion 46,59 and distance to treatment centre, 63 so it was difficult to draw conclusions about these factors.…”