The survivorship of children diagnosed with cancer has risen during the last decade. After the end of treatment those children and their families return to the community where another period of crisis unfolds. In this article, the findings of a larger qualitative study in Puerto Rico related to the return to the community of these patients and their families are discussed, including financial difficulties, the burden of responsibility, and transition to school. These findings provide a rationale for the implementation of a bio-psycho-social model of health that emphasizes reciprocal interactions among the multiple systems in which these families are embedded.
Although pediatric cancer treatment has been reviewed by several authors, the lived experiences of children undergoing this process have seldom been discussed in the literature. The data for this article were obtained from a larger qualitative study that provided a collective view of the pediatric cancer experience at San Jorge Children's Hospital in Puerto Rico. In this article, findings that are directly related to the hospitalization process of these young patients are described, including the hospital as a safe haven, dealing with pain, taking control, and thriving in adversity. These findings provide a rationale for the development of a biopsychosocial model of health that emphasizes reciprocal interactions among the biological, psychological, social, cultural, and spiritual dimensions that influence health.
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
The study of happiness has grown in popularity over the past decades emerging in psychology partly as a reaction against the emphasis on negative topics such as mental illness and other forms of dysfunction. However, the most common way to study happiness and well-being has been using scales that do not allow access to the comments or descriptions of the participants, reducing our comprehension of this phenomenon to numbers. In order to contribute to the study of happiness from a cultural perspective and to understand how Puerto Ricans describe their particular meaning of happiness, a two-phase qualitative descriptive design study was conducted before and after hurricane Maria hit our country. The category “The family context as a main reference for happiness” emerged in both phases of our research. Findings made clear the enduring role of the family in the meaning of happiness for Puerto Ricans.
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