Exploring the experiences of Latino adolescent young adults with advanced cancer and those who care for them  (2018)

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Empirical descriptions of “a good death” exist for older adults with serious illness, and this definition has been the basis for much of what is known about providing quality end of life care for adults. In contrast, little is known about the perspectives or values of Adolescents and Young Adults (AYAs) at the end of life, their caregivers, or their medical teams.

This is especially true for Latino AYAs. What is known is that the death of AYAs is particularly difficult for caregivers and that patient and family needs are inconsistently met. Understanding specifically what Latino AYA patients and their families need at the end of life (and whether any differences exist between groups) has the potential to directly improve clinical care. It is clear, however, that the death of AYAs is particularly difficult for caregivers and clinicians, and that patient and family needs are inconsistently met.

The primary objective of this study is to describe the perspectives, needs, and barriers to communication that Latino Spanish-speaking AYA patients and families experience in their end-of-life care. This study builds on the work of Abby Rosenberg, MD, who conducted qualitative interviews with AYA patients with cancer, their caregivers, and their medical providers at Seattle Children’s Hospital. We will expand on this work by conducting one-on-one semi-structured interviews with Spanish speaking Latino AYA patients, caregivers and bereaved caregivers recruited from cancer centers in Austin, Texas.

Findings from this study will be combined with findings from the Seattle study to develop an intervention designed to improve patient-provider communication at end of life for both English and Spanish speaking families.The proposed project will provide critical descriptions of priorities of end of life care in a group of previously understudied, and perhaps, under-supported Latino patients and families.