Experiences of mothers of disabled children: a phenomenological study

Abstract

Objective: To unveil the experiences of mothers of disabled children, with a view to understand the meaning of that experience. Methods: This is a qualitative study using phenomenological approach based on Heidegger. The study subjects were five mothers with a disabled child. The interviews were performed at the women's homes, guided by the question "To you, what does it mean to have a disabled child? Results: Five categories came into focus: "meeting one's actual infant," "the impact of disability," "treading a new path with one's disabled child," "experiencing maternal altruism in the care of the disabled child," and "altering one's family daily life." Conclusions: The discourses revealed emotionally moved beings experiencing a painful, sorrowful manner of being-in-the-world. Mothers find themselves unprepared to deal with the experience of having a disabled child, though perceiving the situation as an opportunity for self-encounter. Changes occurred to the couple's dynamics and family members became distant. When seeking guidance from health professionals, the mothers failed to find the necessary support. Keywords: Family relations; Disabled children; Pediatric nursing RESUMO Objetivo: Desvelar a vivência da mãe que tem um filho deficiente, para compreender o sentido dessa vivência. Métodos: Estudo qualitativo sob a perspectiva fenomenológica fundamentada em Heidegger. Os sujeitos do estudo foram cinco mulheres que experienciavam a situação de ser-mãe de uma criança deficiente. As entrevistas foram realizadas no domicílio orientadas pela questão norteadora O que é ser, para a senhora, ter um filho deficiente? Resultados: Emergiram cinco categorias: "encontrando-se com o bebê real", "o impacto com a deficiência", "trilhando um novo caminho com o filho deficiente", "vivenciando o altruísmo materno no cuidado do filho" e "modificando o cotidiano familiar". Conclusões: Os discursos revelaram seres emocionados vivenciando uma forma dolorosa e triste de estar-no-mundo. As mães se vêem despreparadas para lidar com a experiência de ter um filho deficiente, embora percebam a situação vivenciada como oportunidade de encontro consigo mesmas. No funcionamento da família, ocorreram alterações na dinâmica do casal e distanciamento entre seus membros. Ao buscarem apoio nos profissionais de saúde, as mães não encontraram a ajuda necessária. Descritores: Relações familiares; Crianças portadoras de deficiência; Enfermagem pediátrica RESUMEN Objetivo: Develar la vivencia de la madre que tiene un hijo con discapacidad, para comprender el sentido de esa vivencia. Métodos: Estudio cualitativo realizado bajo la perspectiva fenomenológica fundamentada en Heidegger. Los sujetos del estudio fueron cinco mujeres que vivenciaban la situación de ser-madre de un niño discapacitado. Las entrevistas fueron realizadas en el domicilio orientadas por la pregunta norteadora: ¿Qué es para ud. tener un hijo con discapacidad? Resultados: Emergieron cinco categorías: "encontrándose con el bebé real", "el impacto con la discapacidad", "recor...

Cuidado centrado na família no contexto da criança com deficiência e sua família: uma análise reflexiva

“…For the family to become a reference for the deficient child, it needs, at the time when the diagnosis is disclosed, to feel safe, supported, and has to have confidence and dignity, aspects that can help the family to cope with reality. [8][9][10] Despite a theoretical acknowledgment concerning the importance of family for the child, studies show there is a lack of guidance concerning how to care for a child with cerebral palsy and what his/her specific needs are 7 , in addition to a feeling of estrangement from health workers, which makes the family feel excluded from the care process 9 .…”

“…12 Health workers should share health and care information with families in an open and candid manner so they have the opportunity to participate in care delivery and decision-making. The literature [8][9] , however, reports that the experience of families with disabled children is permeated by a lack of information and estrangement from health workers. Such a situation is not conducive to the establishment of goals and paths for the family's care for itself or for its disabled child.…”

“…One study 8 reports that families have difficulty guiding their attitudes when faced with the health professionals' own lack of knowledge and misinformation. This is also due to the perception of a lack of involvement and support on the part of health workers, which would be necessary for families to adapt to the situation and make decisions.…”

“…Studies 3,[7][8]11,[15][16][17][18] report that the family experiences * Acronym in Portuguese. radical changes in its routine when the child's disability is diagnosed.…”

“…Families share inauthentic experiences with the nursing staff because they cannot express their feelings and attitudes in relation to their experiences and suffering. 8 They feel the staff charges them with playing the role of caring for and providing the child with the conditions necessary for his/her healthy growth and development. 8,13 Understanding the developmental needs of the child and adolescent, and the needs of the family in the different systems of health care delivery Professionals should be able to identify the needs of both the child and family in the different contexts of care.…”