Significados atribuídos por familiares ao suporte recebido no âmbito da assistência especializada direcionada a fissura labial e/ou palatina: um estudo clínico-qualitativo

Abstract

Introduction: Clinical changes resulting from oral clefts impact both patients and their families, triggering conflicting emotions from diagnosis, birth to adulthood of the person with Cleft Lip and/or Palate (CP/CP). The feelings of family members involve frustrations, uncertainties, fear and insecurity, and require therapeutic support that allow them to re-signify their roles as family caregivers. Objective: To explore the emotional/psychological meanings attributed to the care support received by family members during the specialized follow-up aimed at children with CL/PF. Method: Qualitative research using the Clinical-Qualitative Method. Semi-structured interviews were carried out with open and in-depth questions and field notes. The interviews were carried out remotely, individually, through a Whatsapp video call with family members who accompany children with CL/PF in a specialized center; and audio-recorded in full. The sample was intentional, composed of 11 participants and closed by the saturation criterion. The preliminary stage and data collection took place from March

to October 2021. The data were submitted to the seven-step technique of Clinical- Qualitative Content Analysis. This research was approved by the Research Ethics

Committee of the Federal University of Maranhão under number 4,988,512. Results: Results: In relation to the emotional/psychological meanings attributed to the support received by family members in specialized care, three categories were constructed: Family members' feelings towards health care: dealing with the (un)known and unexpected, in which feelings of sadness, guilt, anger, denial were associated with the search for support for the ideal mourning experienced by family members and the acceptance of the real child, based on the care received by health professionals from the specialized service, providing an opportunity to re-signify the feelings of parenthood and the idea of a family caregiver. ; Facilities and difficulties experienced in the face of contact with health settings, in which the support received is highlighted as the main facilitator in the clinical environment, distancing itself from the collusion of anonymity by health professionals. On the other hand, despite the recognition of care weaknesses, the emotional meaning remains in the interpersonal relationships established with health professionals who see these family members as targets of care, making them, in fact, family caregivers; Perspectives on the future: re-signifying the real child, the process of re-signification of care by family members is highlighted, by enabling positive expectations about the future of children with oral clefts. Final considerations: The interrelationship with the health professionals of Centrinho, made possible the process of acceptance of the real child, through the feeling of reception, satisfaction and belonging by the family. Furthermore, this contact allowed the recognition of self-regulatory mechanisms in health settings, with support being a facilitating factor and barriers to accessing the service interrupting family emotions in the face of the dual role of caregiver-family. Furthermore, the support received made it possible to reframe the family's view of the future of children with oral clefts. Thus, it is expected that the understanding of interpersonal relationships between family members and health professionals will provide the strengthening of behaviors that maximize the subjective appreciation of the demands of family caregivers and that are not restricted to people with oral clefts.