Communications medicine · 2025
Development of the SAVE study protocol to use lived experience to assess the value of serious health-related suffering and palliative care.
СтатьяНазвание и аннотация: Перевод в очереди
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Bhadelia Afsan, Greaves Natalie, Doubova Svetlana V, Knaul Felicia M
Аннотация
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 (Suffering Alleviation and the Value of Experiential 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.
METHODS: SAVE (Suffering Alleviation and the Value of Experiential 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.