The conceptual understanding of pediatric palliative care: a Swiss healthcare perspective

Abstract

Background Health care providers’ perception of pediatric palliative care might negatively influence timely implementation. The aim of the study was to examine understanding of and attitudes towards pediatric palliative care from the perspective of health care providers working in pediatric oncology in Switzerland to promote the timely implementation of pediatric palliative care. Methods Five mixed focus groups were conducted with 29 health care providers (oncologists, nurses, psychologists, and social workers) at five Swiss pediatric oncology group centers. The focus group interviews were analyzed using thematic coding. Results Most participants associated pediatric palliative care with non-curative treatment. They regularly reported difficulties in addressing palliative care services to families due to the strong stigma surrounding this term. They also thought that the notion of palliative care is very much linked to a policy context, and difficult to reconcile with children’s everyday life. To overcome these obstacles many participants used synonyms such as comfort or supportive care. A few providers insisted on the need of using palliative care and reported the importance of positive “word of mouth”. Conclusions The use of synonyms might be a pragmatic approach to overcome initial barriers to the implementation of palliative care in pediatrics. However, this tactic might ultimately prove to be ineffective as these terms might acquire the same negative connotations as palliative care. Positive word-of-mouth by satisfied families and healthcare providers might be a more sustainable way to advocate for pediatric palliative care than replacing it with a euphemistic term.

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...…”

“…The majority of studies were conducted in the United States (n = 28). Others were in the United Kingdom (n = 3), 23,47,76 Canada (n = 3), 50,51,63,72 Germany (n = 3), 57,73,90 France (n = 1), 87 Switzerland (n = 1), 79 Israel (n = 1) 49 and two in multiple countries. 65,71…”

“…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.…”

“…54,58,86 Five studies included some children and young people with conditions other than cancer. 61,67,70,73,88 Of the 11 studies exploring stakeholder views, 3 recruited paediatric oncology staff from single hospitals 75,77,82,83 and 1 from multiple hospitals, 79,80 1 recruited staff involved in providing palliative care to children with cancer from primary, tertiary and community settings, 76 4 recruited paediatric oncologists via professional organisations 65,71,72,81 and 1 recruited parent and young person dyads from three hospitals. 68 In total, these studies represented the views of 1133 physicians, 986 other healthcare professionals (mainly nurses, social workers and other staff working in paediatric oncology, but also in palliative care and other settings), 129 parents and 129 young people.…”

Barriers to Palliative Care in Pediatric Oncology in Switzerland: A Focus Group Study

“…However, the socioecological model was applied to the identified themes only post hoc and thus did not guide the analysis. Conceptual barriers to PPC are analyzed in a separate paper (De Clercq et al, 2019).…”