Away from Home: Experiences of Mexican American Families in Pediatric Palliative Care

Abstract

In this study, the authors describe the experiences of Mexican American family members who immigrated to the United States and then experienced the death of a child. Participants described difficulties they encountered crossing the border, leaving the culture of their homeland, and then caring for a seriously ill child. Key themes that characterized their experience of being far from home included a backdrop of poverty, absence of traditional social support, and challenges caring for healthy siblings. Participants made comparisons between health care in Mexico and the United States and assessed the trade-off they made to come to the United States, discussing access to medical care and how they were able to relate to health care providers. Further, participants conveyed how rituals from their home country were important in maintaining connections with the child who died. Based on these themes, clinical implications and strategies that focus on understanding participants' experiences with past traumas, communication and literacy needs, and the challenges of living in poverty—especially with a critically ill child—are needed.

KEYWORDS:

• culture
• immigration
• palliative care

ACKNOWLEDGMENTS

This study was funded by grant 1 R01 NR07879–01 from the National Institute of Nursing Research, National Institutes of Health. The Project on Death in America: Social Work Leadership Development Award partially funded Ms. Contro's involvement in this research. The authors owe special thanks to their co-investigators: Arthur Ablin, MD, Catherine Chesla, RN, PhD, and Harvey Cohen, PhD, MD. The authors also thank Michelle Brown, PhD; their research associates: Yesenia Alvarez, Veronica Barraza, Alice Bierman, Magdalena Cabrera, Rebecca Chan, Annie Chang, E. Peiyi Chen, Lisa Chiu, Audrey Fong, Carlos Reyes-Hailey, and Patricia Soto-Minder; and the authors' cultural advisors for their numerous contributions. Special thanks go to the family members who generously shared their stories.

Notes

Note. Families UTL/C = Families Unable to Locate/Contact including those living out of state.

*One family was comprised of a Chinese American mother and a Mexican American father.