Anticipatory mourning : investigating children and youth's self-reported experiences with life-limiting illness.
Year: 2010
Type: article
Abstract: Pediatric end-of-life care is an emerging area of research and specialization; however, the literature and empirical research are rather limited and focused primarily on medical aspects of care.The current study aimed to expand this area of research by moving beyond medical issues and by directly soliciting the perspectives of children and youth with life-limiting and/or life-threatening illnesses.Anticipatory Mourning as described by Rando (2000) was used as the theoretical guide for this study.The primary research questions for this study were: 1) In what ways do ill children and youth characterize their illness; 2) How do significant relationships change as a function of lifelimiting/life-threatening illness in children and youth; and 3) How do ill children and youth characterize hope and their future in light of their illness?A total of 10 children and youth, aged 8 to 21 years, participated in this qualitative study.Grounded theory methods were used to analyze the interviews and a preliminary conceptual framework emerged with the core category of Living in Light of Life-Limiting Illness.Major categories included Aspects of Illness and Aspects of Living and the informationobtained from the interviews addressed the three primary research questions.The participants described their illness through the ways that their diagnosis was obtained, the treatments they received, declines in physical functioning, treatment interventions, positive aspects of their experiences, as well as how they responded to their illness at iv various points in time.The participants described significant relationships including the support of their immediate and extended families, the relationships with their pets, the roles of friends, and their interactions with individuals from the larger community.In regard to characterizing hope and their future, the participants described a tension between maintaining hope for health and survival, and their fear and recognition that death was a realistic possibility.Relatedly, the participants described short-and longterm hopes and goals for their futures.Most participants stated that they did not have specific ideas about planning for their end-of-life, but all did want the opportunities to say good-bye to significant others.
Author: Andrea M. Loucaides
Institution: University of Akron
Language: English
Field: Medicine
Domain: Health Sciences
Open Access status: green
OpenAlex ID: W2230861468