Esperança familiar no contexto dos cuidados paliativos perinatal e neonatal

Abstract

The present study is theoretical, of a reflective nature, with the objective of mapping scientific evidence on family hope in the context of perinatal and neonatal palliative care and weaving reflections on the subject. To this end, a scoping review was developed, with the intention of identifying what is already presented in the literature, followed by notes in the direction of contributing to the conceptual densification and practical renewal of peri and neonatal PC in terms of hope. Searches were performed in the following databases: CINAHL, PubMed and PsycINFO following the JBI recommendations. A total of 466 articles were identified, 22 excluded for being duplicates and 393 after reading the title and abstract for not meeting the objectives of the study. For full reading, 51 articles were selected, of which ninewere unavailable/or with restricted access and 29 were excluded for not answering the research question; thus 13 articles were selected for this study. The study reveals two main milestones for hope: difficulty in handling “uncertainty” in the face of diagnosis and information, which we categorize as ANNOUNCEMENT; the other relates to the later moment of “certainty” in the face of the intention to relate and experience parenting, called LINKING and CARE. It was identified that the recognition of hope as a structuring of confrontation and part of autonomy is fundamental and was disregarded according to studies analyzed in this review. Hope is directly related to autonomy, the more the former, the more the latter, the same happens in the reverse situation; it is dependent on the social relationships and meanings attributed for it to be established. When faced with situations, environments and professionals that culminate in hopelessness, autonomy is weakened, and they become passive in the process. Hope is, therefore, a force capable of directing parents on the path of uncertainties experienced through the diagnosis of a condition that compromises their child's life, and health professionals are fundamental elements to keep them moving, acting as support.