Publication
Pilgrimage in pediatric palliative care: The journey of caregivers
Mendoza Martínez M, Guadarrama Orozco J, Peláez Ballestas I · Social Science & Medicine (1982) · 2024
Admission of terminally ill patients into pediatric palliative care remains a challenge in Mexico and Latin America, despite the multiple benefits of early transfer. In this context the trajectories in search of health care of patients and caregivers have not been documented. Therefore, the objective of this study was to describe and analyze the experiences of primary caregivers and family members of pediatric patients in the palliative care unit of a Children's Hospital in Mexico, between October 19, 2019, and January 19, 2022. We used the framework of health pilgrimage, which comprises the transformative search of healing for patients, focusing on health barriers and the necessary displacement in search of care. With information obtained through interviews, we reconstructed the pilgrimages in search of health care navigating the Mexican healthcare system. Furthermore, we describe the experience of the primary caregiver accompanying the sick child during their journey to palliative care. We recount the adverse factors associated with this pilgrimage, such as the emotional and socioeconomic impact on primary and secondary caregivers.
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.