Discovery of hearing impairment by the family: seeing an idealized future collapse

Abstract

Objective: To portray the family experience when the discovery of hearing impairment in their child. Methods: Qualitative research with Symbolic Interactionism and Grounded Theory as theoretical and methodological frameworks. Data collection instrument: semi-structured interview. The study included nine families (32 participants). Results: The theme, "Seeing an idealized future collapse", shows that for the family, discovered the possibility of having a child with hearing loss is a moment that involves many negative feelings. Conclusion: Discover the hearing loss has a meaning of the expected loss of the perfect child, frustrated expectations and uncertain future. The family has been inadequately approached and the diagnosis has been made late, which requires immediate changes to the practices of professionals. Keywords: Family; Disabled children; Hearing loss; Life change events; Family nursing ReSumoObjetivo: Retratar a experiência familiar, quando da descoberta da deficiência auditiva de um filho. Métodos: Pesquisa qualitativa, tendo o Interacionismo Simbólico e a Teoria Fundamentada nos Dados, como referenciais teóricos e metodológicos. Instrumento de coleta de dados: entrevista semiestruturada. Participaram do estudo nove famílias (32 participantes). Resultados: O tema, "Ver desmoronar um futuro idealizado", evidencia que, para a família, a descoberta da possibilidade de ter uma criança com deficiência auditiva é um momento complexo que envolve inúmeros sentimentos negativos. Conclusão: Descobrir a deficiência auditiva tem um significado de perda da criança perfeita esperada, de expectativas frustradas e futuro incerto. A família tem sido abordada inadequadamente e o diagnóstico tem sido feito tardiamente, o que exige mudanças imediatas das práticas dos profissionais envolvidos. Descritores: Família; Crianças com deficiência; Perda auditiva; Acontecimentos que mudam a vida; Enfermagem famíliar ReSumen Objetivo: Retratar la experiencia familiar, cuando se descubre la deficiencia auditiva de un hijo. Métodos: Investigación cualitativa, teniendo al Interaccionismo Simbólico y la Teoría Fundamentada en los Datos, como referenciales teóricos y metodológicos. Instrumento de recolección de dados: entrevista semiestructurada. Participaron en el estudio nueve familias (32 participantes). Resultados: El tema, "Ver desmoronarse un futuro idealizado", evidencia que, para la familia, el descubrimiento de la posibilidad de tener un niño con deficiencia auditiva es un momento complejo que involucra innumerables sentimientos negativos. Conclusión: Descubrir la deficiencia auditiva tiene un significado de pérdida del niño perfecto esperado, de expectativas frustradas y futuro incierto. La familia ha sido abordada inadecuadamente y el diagnóstico realizado tardíamente, lo que exige cambios inmediatos de las prácticas de los profesionales involucrados. Descriptores: Familia; Niños con discapacidad; Pérdida auditiva; Acontecimientos que cambian la vida; Enfermería de la familia

Cochlear Implant: the complexity involved in the decision making process by the family

“…Little has been described in the literature about nurses' activities in auditory health with regard to the treatment of CI users. Nevertheless, a wide activity area exists for nurses together with the multidisciplinary team ( 29 ) , in the execution of evaluation, selection, indication and preparation activities for the decision about the CI; in intraoperative care; in postoperative orientations; in the accompaniment to periodical returns to the CI center (identification of parental overprotective behaviors and dependence of the child, attempting to develop their self-care with their CI; awareness-raising of the family about its role and importance in the interaction process and in stimulating the child; identification of difficulties in the school context together with other professionals and participation in support groups for families and individuals with HI and CI users.…”

Nursing diagnoses and interventions in children submitted to cochlear implantation

“…Literature is scarce regarding the nurse's role in the area of auditory health, including treatment with CI. Nursing care begins in the preoperative phase through provision of guidelines and strengthening the decision-making process, extending to the intra and postoperative periods, including preparing caregivers regarding home care (8) . Several instruments have been proposed in order to systematize nursing care.…”

Questions of informal caregivers of children regarding the postoperative period of cochlear implant

“…They often delimit places, activities, and the age range of the children and people they can interact with. Thus, the child often interprets such actions as unjust rules and impositions (19) .…”

“…We highlight that nursing care must begin in the preoperative period by providing guidelines and that the strengthening of the decision-making process extends to the intra and postoperative period, which includes the preparation of caregivers regarding home care (19,26) . In addition to the promotion of the quality of life of these children and their family members, the systematized nursing care contributes to minimize postoperative complications and to the success of hearing and language rehabilitation (27) .…”