Journal Article

Development of the SAVE study protocol to use lived experience to assess the value of serious health-related suffering and palliative care

Greaves, Natalie, Doubova, Svetlana V., Knaul, Felicia M., Bhadelia, Afsan

2025

Overview

Background Suffering generated by life-limiting or life-threatening conditions is a complex phenomenon inextricably linked with human experience. Most of this suffering can be ameliorated with adequate access to palliative care that is unavailable in much of the world, especially low-resource settings. Exploration of the definitional boundaries of and needs pertaining to suffering due to illness suggests that patients and families assign specific importance to the compassionate and supportive aspects of palliative care. However, the intrinsic and personal value of suffering alleviation has not been systematically studied in low- and middle-income countries, where it is direly needed. Methods SAVE ( S uffering A lleviation and the V alue of E xperiential knowledge) protocol is developed based on deliberation of a global expert group on limitations of quantitative measurement of suffering, literature reviews, and piloting in two countries – Barbados and Mexico – to support evidence generation that is anchored by lived experience. Results The SAVE study protocol presents a methodological blueprint for study design, implementation, and analysis to conduct research on the value assigned to alleviation of serious health-related suffering by multiple stakeholders, especially patients and non-professional caregivers. The protocol incorporates an instrument for data collection. It also provides guidance on qualitative approaches and their importance to understanding lived experience to strengthen health system performance assessment. Conclusions Exploration of suffering based on personal experience is primarily focused on high-income contexts and/or clinical care management. Evidence generated using the protocol, which focuses on responsiveness, can advance development of people-centered metrics and bolster the investment case to equitably expand access to palliative care worldwide. Importantly, it can shift priority-setting and practice towards high-value healthcare. Plain language summary Pain and other types of suffering are often not addressed when people face life-limiting or life-threatening conditions, especially in areas with limited healthcare access. This study aims to prioritize alleviation of health-related suffering and palliative care within health systems. It asks how personal experiences and stories on suffering due to illness from patients and families can better guide priority-setting, resource allocation, and implementation decisions by policymakers. The results provide new ways to gather qualitative information (non-numerical and commonly focused on knowledge, attitudes, and perspectives) and understand patient and caregiver journeys rather than solely using quantitative data (numerical) in policy and practice. Comprehensive evidence on lived realities can provide important details on what patients and their families value most, which can in turn be used to improve the responsiveness of healthcare. Bhadelia et al. present a protocol to examine the intrinsic and personal value of alleviating serious health-related suffering and of palliative care based on lived experience. It highlights opportunities to shift health system priority-setting alongside responding to the call for greater incorporation of qualitative approaches.

• Publisher: Nature Publishing Group UK,Springer Nature B.V,Nature Publishing Group,Nature Portfolio
• Subject: 692/1807/410/2610 / 692/700/228/415 / Activities of daily living / Cardiovascular disease / Caregivers / Chronic illnesses / Ischemia / Medicine / Medicine & Public Health / Nervous system / Pain / Palliative care / Patients / Qualitative research / Quality of life