Oncologists’ and Haematologists’ Views of what Facilitates or Hinders Referral of a Child with Advanced Cancer to Palliative Care in India.

Salins, Naveen and Preston, Nancy and Hughes, Sean (2021) Oncologists’ and Haematologists’ Views of what Facilitates or Hinders Referral of a Child with Advanced Cancer to Palliative Care in India. PhD thesis, Lancaster University.

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Abstract

Title: Oncologists' and haematologists' views of what facilitates or hinders referral of a child with advanced cancer to palliative care in India. Background and Aim: In India, there is a high incidence, low cure rates and increased cancer-associated deaths among children with cancer. Although a significant proportion need palliative care, few are referred or referred late. Oncologists and haematologists gatekeep the referral process. This study explored their views on facilitators and barriers to palliative care referral. Methods: Twenty-two paediatric oncologists and haematologists from thirteen Indian cancer centres were recruited and interviewed. The critical realist paradigm was the philosophical foundation informing this study. Data were analysed using reflexive thematic analysis. Findings were discussed using social exchange theory and feedback intervention theory. Results: Four themes were generated. 1) Presuppositions about palliative care where qualifications, experience and being an oncologist conferred power to refer. Oncologists had mixed views about their ability to address palliative care needs. Palliative care could symbolise therapeutic failure and abandonment, which hindered referral. Trustworthy palliative care providers had clinical competence, benevolence, 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 cost-benefits to palliative care referral: Symptom management and psychosocial support benefitted the patients. Teamwork, stress reduction and personal growth helped the oncologists. Perceived interference and communication by the palliative care team incongruous with the oncologist's views hindered referral. 4) Suggested strategies for developing an integrated palliative care model include clear 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, associated tasks and cost-benefits influenced referral behaviour. Association with the palliative care team and the experience of palliative care referrals prompted the oncologists to provide feedback to a palliative care provider as professional inputs directed at further development of the palliative care team. Continuous feedback between cancer and palliative care providers could foster integration and improve the palliative care management of children. This study contributes to the literature on integrated palliative care by proposing an infinite loop model where the oncologist's feedback could assist in bettering the palliative care team’s services, which might positively impact the oncologist's experience of working with the palliative care team. A positive experience might also influence the presuppositions of oncologists and haematologists, impacting future referrals.