Presuppositions, cost–benefit, collaboration, and competency impacts palliative care referral in paediatric oncology: a qualitative study

Abstract

Background Although 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. Methods Twenty-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. Results Four 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. Conclusion Presuppositions 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.

Oncologists' Palliative Care Referral Behaviour: Testing Utility of Social Exchange Theory as an Explanatory Framework

“…The perception of self-e cacy in uences cognitive and affective processes and impacts social behaviour and action (77). In the study (55), only a small number of oncologists perceived self-e cacy in providing palliative care. Most oncologists valued the bene t of palliative care referral and acknowledged their constraints regarding the limits to their skills and knowledge needed to provide palliative care.…”

“…In the review (54), oncologists expressed self-e cacy in catering to palliative care needs. However, the study (55) found that oncologists had mixed feelings about their ability to respond appropriately to these needs. Perceived self-e cacy is a person's belief about their capabilities to produce a level of performance to accomplish a task that meets the expectation of the self and others (77).…”

“…Steps 4,5, and 6: Determining measures for Hypothesis Testing, Data Collection and Analysis In this step, the hypothesis was tested using a systematic review (54) and original research (55) conducted by the authors of this paper. The data collection and analysis of these two measures are described below.…”

“…The subsequent qualitative study (55) was conducted with a research question: What are the views of oncologists and haematologists on what facilitates or hinders the referral of a child with advanced cancer to palliative care? Twenty-two eligible oncologists and haematologists managing children with cancer were purposively recruited from 13 tertiary cancer centres.…”

“…In both review (54) and the study (55), oncologists felt that efforts needed to make a palliative care referral were signi cant. Oncologists found it challenging to navigate a complex set of illness-related factors like the course of illness, complications, stage of the disease, presence of symptoms, cure potential, the intent of treatment, prognosis and performance status of the patient underpinning the palliative care referral decision (54,55).…”