O cuidado a crianças em condições crônicas no contexto pré e transpandemia à luz do Family Management Style Framework

Abstract

Introduction: The context in which the family is inserted can change, facilitating or compromising the care offered to children with chronic conditions (CCC). This study will consider the family contexts that existed before and during the COVID-19 pandemic. It is based on the assumption that the need for continuous care for CCC, combined with the change of context in the lives of families, promoted by the pandemic, has changed the family's view of care, which can directly modify family management and compromise care for CCC. Objective: To analyze the family's view of caring for their children with chronic conditions in the pre and transpandemic contexts by COVID-19 in the light of the Family Management Style Framework .Method: A longitudinal, qualitative, descriptive study, based on the Family Management Style Framework (FMSF) theoretical framework, which included 24 CCC families aged 2 to 4 years. Data production took place in two stages: Stage 1: Production of data referring to the pre-pandemic context, which took place between October 2019 and May 2020; Stage 2: Production of data referring to the transpandemic context, which took place between June 2020 and January 2021. To produce the data, semi-structured interviews were used, with a script based on the FMSF. The interviews were transcribed in full and the data submitted to thematic analysis, of the deductive type, guided by the FMSF. The research complied with resolutions 466/12 and 580/2018 and was approved by the Research Ethics Committee. Results: In the pre-pandemic context, the family's view was directed towards the potential of the CCC, while in the transpandemic context, the focus was maintained on the weaknesses of the CCC. The COVID-19 pandemic was recognized as an additional aggravating factor in the lives of CCC. Difficulties for care were identified in the transpandemic context, referring to the interruption of health services, the need for distance and restriction to the home, the incorporation/intensification of hygiene care for the prevention/containment of COVID-19 and the maintenance of school and rehabilitation activities at home. Facilities for care were related to access to health insurance, the possibility of dedicating oneself exclusively to caring for the child and the continuity of rehabilitation activities in the transpandemic context. Families' financial resources were increased by receiving emergency aid in the context of the transpandemic. On the other hand, the social and support network was reduced. Final considerations: The family's view of care can be influenced by the context in which they live. In the context of the transpandemic, families were able to manage care, however, the focus shifted from maintaining health and promoting child development to preventing COVID-19 infection and reducing potential damage to child development.