Pilgrimage in pediatric palliative care: The journey of caregivers

Pilgrimage in pediatric palliative care: The journey of caregivers

Mendoza MMG; Guadarrama OJ; Peláez BI

Social Science and Medicine

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.

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

2025 SE2 - LRS