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. 2023 Dec 14;13(12):e075691.
doi: 10.1136/bmjopen-2023-075691.

Dimensions of suffering and the need for palliative care: experiences and expectations of patients living with cancer and diabetes and their caregivers in Mexico - a qualitative study

Svetlana V Doubova  1 , Afsan Bhadelia  2 , Diana Pérez-Moran  3 , Ingrid Patricia Martinez-Vega  3 , Nancy García-Cervantes  4 , Felicia Knaul  5   6   7   8   9
Affiliations

Dimensions of suffering and the need for palliative care: experiences and expectations of patients living with cancer and diabetes and their caregivers in Mexico - a qualitative study

Svetlana V Doubova et al. BMJ Open. .

Abstract

Objectives: Over 40 million people in low-income and middle-income countries (LMICs) experience serious health-related suffering (SHS) annually and require palliative care. Patient and caregiver experiences of SHS in LMICs are understudied despite their importance in guiding palliative care provision. Diabetes and cancer are the second-leading and third-leading causes of death in Mexico, causing a significant SHS burden on patients, families and health systems. This study examines SHS and palliative care from the point of view of patients with cancer and diabetes and their caregivers.

Design: A qualitative descriptive study based on in-depth telephone interviews was conducted between August 2021 and February 2022. Data were analysed through inductive thematic analysis.

Participants: Overall, 20 patients with end-stage cancer, 13 patients with diabetes and 35 family caregivers were interviewed individually.

Setting: Participants were recruited from two family medicine clinics and a pain clinic in Mexico City.

Results: Seven themes emerged: (1) suffering as a multifaceted phenomenon, (2) diversity in perceptions of suffering, (3) different coping strategies, (4) need and perceived importance of relief from suffering, (5) barriers to accessing services to relieve suffering, (6) demand for the health sector's active and humane role in addressing suffering and (7) preferences and need for comprehensive care for relief from suffering. The primary coping strategies included family companionship, protective buffering and faith-based support. Participants lacked knowledge of palliative care. They expressed the importance of relief from suffering, viewing it as the health sector's responsibility and requesting more humane, personalised care and access to medicines and pain clinics.

Conclusions: The multifaceted nature of SHS highlights the health system's responsibility to provide high-quality palliative care. Policies to enhance access to palliative care should integrate it into primary care, redesigning services towards patient and caregiver biopsychosocial and spiritual needs and ensuring access to medicines and competent health personnel.

Keywords: adult oncology; adult palliative care; general diabetes; patient-centered care; qualitative research.

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Conflict of interest statement

Competing interests: During the 36 months prior to publication, AB was a recipient of the Fulbright U.S. Scholar Teaching and Research Award from the Bureau of Educational and Cultural Affairs, U.S. Department of State for work inclusive of palliative care outside the submitted work; AB reports consulting fees through a research grant from the Medical Research Council to the University of Edinburgh and from the University of Miami for work related to palliative care outside the submitted work.SVD reports consulting fees from the University of Miami for work related to palliative care outside the submitted work.FK had research grant funding from Medical Research Council to the University of Miami and Funsalud (Mexican Health Foundation) for work related to palliative care; a research grant from the US Cancer Pain Relief funding to the University of Miami for work related to palliative care; research grant funding to Tómatelo a Pecho, AC outside of the scope of current work from Merck Sharp & Dohme; research grant funding to the University of Miami outside of the scope of current work from Merck KGaA/EMD Serono; research grant funding to Tómatelo a Pecho, AC outside of the scope of current work from Avon Cosmetics, S. de R. L. de C. V. and personal fees from Merck KGaA/EMD Serono. In addition, FK has been a Member of the Board of Directors of the International Association for Hospice and Palliative Care since 2020 (not compensated). No other competing interests were declared.

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