Raíssa Passos Dos Santos, Mary Ellen Macdonald, Franco A Carnevale
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Moral experiences of children with medical complexity: A participatory hermeneutic ethnography in Brazil.
Children with medical complexity have been defined within the literature as chronically ill and medically fragile children with complex care needs. Care for these children raises significant ethical and moral considerations. Therefore, this participatory ethnographic study conducted with eight children and their families aimed to better understand the moral experiences of children with medical complexity, based on views of children as moral agents and capable of understanding and expressing interpretations about their lived experiences. Through our participatory hermeneutical ethnographic research, we were able to shed light on how children with medical complexity express their moral experiences within a complex sociopolitical context, perpetuating dominant outlooks on what is considered a "normal" child. Children with medical complexity described their resistance to these dominant views as they strive to be included in discussions about matters that affect them, reacting to painful medical procedures and treatments, and expressing their concerns about their future aspirations. The knowledge advanced by this study about moral experiences of children with medical complexity can inform understandings of children's interests based on their own interpretations within complex sociopolitical contexts that value their lives differently.
期刊介绍:
Journal of Child Health Care is a broad ranging, international, professionally-oriented, interdisciplinary and peer reviewed journal. It focuses on issues related to the health and health care of neonates, children, young people and their families, including areas such as illness, disability, complex needs, well-being, quality of life and mental health care in a diverse range of settings. The Journal of Child Health Care publishes original theoretical, empirical and review papers which have application to a wide variety of disciplines.