Considerations for Fostering Awareness of Palliative Care in Developing Contexts: Lessons from the PC-PAICE Evaluation in India (SCI926)

• Published in: Journal of pain and symptom management 2021-03, Vol.61 (3), p.683-684
• Main Authors: Singh, Nainwant, MD, Giannitrapani, Karleen, PhD, Bhatnagar, Sushma, MD, Satija, Aanchal, PhD, Ganesh, Archana, MPH MBA, Gamboa, Raziel, MA, Fereydooni, Soraya, BS, Chandrashekaran, Shivani, BS, Spruijt, Odette, MBCHB, Lorenz, Karl, MD MSHS
• Format: Article
• Language: English
• Subjects: Access; Anesthesia; Barriers; Campaigns; Cancer; Capacity building approach; Communication; Curricula; Integrated care; Interdisciplinary aspects; Medical education; Medical referrals; Medical students; Nurses; Oncology; Pain Medicine; Palliative care; Patient communication; Professional attitudes; Professional relationships; Quality of life; Social perception
• ISSN: 0885-3924; 1873-6513
• DOI: 10.1016/j.jpainsymman.2021.01.088

Objectives 1. Explain the need for palliative care capacity in developing regions. 2. Identify and compare the barriers for palliative care awareness with previous social awareness campaigns in India. 3. Identify the major domains that enhanced awareness of the value of palliative care at cancer facilities in India. Background Prior studies have described lack of palliative care (PC) awareness as a barrier to PC integration in developing regions. A guiding framework to promote improvements in this sphere is needed. Research Objectives We aimed to 1) identify and understand the factors that changed awareness of the value of PC at cancer facilities in India and 2) propose a solutions toolkit matched to these factors. Methods In an evaluation of the Palliative Care–Promoting Access and International Cancer Experience PC-PAICE project, we interviewed 44 interdisciplinary providers from 7 geographically diverse sites throughout India using semi-structured interview guides. We used a combination of inductive and deductive approaches to identify themes. Results Theme 1: Provider and Interdepartmental Communication: Oncology providers may lack an orientation to palliative care as a resource that could improve their patient's quality of life instead of somewhere to refer "when they started dying." PC providers found that direct communication with referring providers about key palliative concepts, referral frameworks, and patient co-management may improve professional relationships, referral rates, patient-provider communication, and patient retention in specialty clinics. Theme 2: Education: Physicians, medical students, and nurses had limited understanding of palliative care, and there was no "competency-based training" which led to a "dilution" in practice standards. Clinicians created a curriculum and published India-specific research to enhance the value of palliative care as a field of medicine. Theme 3: Provider Knowledge, Attitudes, and Beliefs: Strategies to cultivate "positive attitudes" towards palliative care are needed to overcome common misbeliefs about PC (e.g. "people go there to die"). Conclusion Minimal exposure and limited understanding of PC hinders program capacity building; identifying those barriers and creating solutions may help improve awareness and access to these resources. Implications for Research, Policy, or Practice We are building a toolkit to operationalize provider and organizational level strategies to address these three themes t