Author:
Salins Naveen,Hughes Sean,Preston Nancy
Abstract
AbstractBackgroundAlthough a significant proportion of children with cancer need palliative care, few are referred or referred late, with oncologists and haematologists gatekeeping the referral process. We aimed to explore the facilitators and barriers to palliative care referral.MethodsTwenty-two paediatric oncologists and haematologists were purposively recruited and interviewed. Data were analysed using reflexive thematic analysis. Findings were interpreted using the critical realist paradigm.ResultsFour themes were generated. 1) Oncologists expressed concern about the competency of palliative care teams. Palliative care often symbolised therapeutic failure and abandonment, which hindered referral. Trustworthy palliative care providers had clinical competence, benevolence, and knowledge of oncology and paediatrics. 2) Making a palliative care referral was associated with stigma, navigating illness-related factors, negative family attitudes and limited resources, impeding palliative care referral. 3) There were benefits to palliative care referral, including symptom management and psychosocial support for patients. However, some could see interactions with the palliative care team as interference hindering future referrals. 4) Suggested strategies for developing an integrated palliative care model include evident collaboration between oncology and palliative care, early referral, rebranding palliative care as symptom control and an accessible, knowledgeable, and proactive palliative care team.ConclusionPresuppositions about palliative care, the task of making a referral, and its cost-benefits influenced referral behaviour. Early association with an efficient rebranded palliative care team might enhance integration.
Publisher
Springer Science and Business Media LLC
Reference105 articles.
1. Steliarova-Foucher E, Colombet M, Ries LAG, et al. International incidence of childhood cancer, 2001–10: a population-based registry study. Lancet Oncol. 2017;18(6):719–31. https://doi.org/10.1016/S1470-2045(17)30186-9.
2. Magrath I, Steliarova-Foucher E, Epelman S, et al. Paediatric cancer in low-income and middle-income countries. Lancet Oncology. 2013;14(3):e104–16. https://doi.org/10.1016/S1470-2045(13)70008-1.
3. Ellison LF, Pogany L, Mery LS. Childhood and adolescent cancer survival: A period analysis of data from the Canadian Cancer Registry. Eur J Cancer. 2007;43(13):1967–75. https://doi.org/10.1016/j.ejca.2007.05.014.
4. Gupta S, Howard SC, Hunger SP, et al. Treating Childhood Cancer in Low- and Middle-Income Countries. In: Gelband H, Jha P, Sankaranarayanan R, et al, editors. Cancer: Disease Control Priorities, Third Edition (Volume 3). Washington (DC): The International Bank for Reconstruction and Development / The World Bank; 2015. Chapter 7. Available from: https://www.ncbi.nlm.nih.gov/books/NBK343626/. https://doi.org/10.1596/978-1-4648-0349-9_ch7.
5. Gans D, Kominski GF, Roby DH, Diamant AL, Chen X, Lin W, Hohe N. Better outcomes, lower costs: palliative care program reduces stress, costs of care for children with life-threatening conditions. Policy brief (UCLA Center for Health Policy Research), (PB2012-3). 2012:1–8.