Cultural Aspects of the Puerto Rican Cancer Experience: The Mother as the Main Protagonist

Abstract

Pediatric cancer survivors are a growing group whose needs extend to multiple contexts and systems. Most studies dealing with the emotional sequelae of childhood cancer have neglected patients' and parents' perspectives. Few have dealt with issues faced by the treatment team. Our research constitutes the first attempt to gather a collective view of such experience in Puerto Rico. Using a phenomenological approach, in-depth interviews were conducted with acute lymphoblastic leukemia (ALL) patients, their mothers, and their oncology treatment team (18) at a children's hospital in Puerto Rico. Analysis followed the model proposed by Strauss and Corbin. In this article, findings directly associated with the cultural aspects of the Puerto Rican cancer experience are presented, including the mother's role-devotion and abandonment; the father's role-masculine vulnerability; and the family paradox. Mothers' protagonism was the central theme that emerged from these three categories.Keywords: children; culture; cancer, psychosocial aspects; families, caregiving; fathers; grounded theory; illness and disease; mothering; phenomenology; Puerto Ricans; Puerto Rico A t a children's hospital in Puerto Rico one of the investigators of this research has been performing neuropsychological testing of children diagnosed with acute lymphoblastic leukemia (ALL) since the early 1990s, as part of multisite investigations of the Dana Farber Cancer Institute (DFCI) Pediatric ALL Consortium to study the neuropsychological sequelae of ALL treatment in these pediatric patients. However, while interviewing the patients and their parents as part of the neuropsychological research protocol some issues surfaced that were not fully explored, as they had not been contemplated in the original research plan. The patients as well as their parents seemed to have a strong need to share information about their reactions to the diagnosis and treatment, the effect of the illness on themselves and their family, and the challenges they were facing. It became very clear that there was a whole spectrum of meanings that needed to be uncovered.These concerns were discussed with the other two authors, who have expertise in qualitative research, and their suggestions on how to explore the experiences of these patients and their families became the main ideas that fueled this investigation. Together we embarked on a review of the recent literature on pediatric cancer, which confirmed our perception and added some other thought-provoking avenues of inquiry

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