Mães de crianças com deficiência visual: dificuldades e facilidades enfrentadas no cuidado

Abstract

This study aimed to identify the difficult and easy aspects faced by mothers of visually impaired (VI) children in their care. It is a descriptive qualitative study, developed in the second semester of 2011, with ten mothers of children with visual impairment from an Educational Center for the Visually Impaired located in southern Brazil. Data were collected by means of semistructured interviews and submitted to thematic content analysis. The identified difficulties were the lack of knowledge regarding the disease and how to take care of the child, the lack of access to health services, overload generated by the dependence of the child and lack of support and prejudice within their own family. The easy aspects involved the desire for the child's healthy development the chance of being in touch with qualified professionals for their education, and the contact with other VI children. Therefore, it is important to qualify the family for the care of VI children so as to ensure the development of skills and competencies enabling them to live with quality.

(Un)receptiveness in interactions with professionals: experiences of parents of children with retinopathy of prematurity

“…Another aspect appreciated in this and in another study (23) was the importance of transforming linguistic barriers, mainly related to technical jargon as they constitute limits to dialogue and to intersubjectivity (20) . For the parents of this study, the ROP diagnosis involved a lack of knowledge about the pathology and a lack of more detailed information about it, along with developments related to constructing child care; a fact also identified in a study aimed at knowing the difficulties and facilities faced by mothers caring for children with visual impairment (7) . Knowledge acquisition about VI therefore represents an important contribution to the effectiveness of family care to the child (7) .…”

“…For the parents of this study, the ROP diagnosis involved a lack of knowledge about the pathology and a lack of more detailed information about it, along with developments related to constructing child care; a fact also identified in a study aimed at knowing the difficulties and facilities faced by mothers caring for children with visual impairment (7) . Knowledge acquisition about VI therefore represents an important contribution to the effectiveness of family care to the child (7) . Thus, the dual and incipient relationship in the informational framework established between parents and health professionals in caring for children with ROP has a negative impact on parenting.…”

“…They point out the lack of information about the evolution and prognosis of their child as a promoter of their suffering (3) . In the context of VI, the family needs to be recognized as fundamental for the prognosis of the disease and the development of the child, especially through support and information (provided) by the health team (7) . However, the relationship with the health professional has been conceived as a critical challenge (8) which generates a paradox, since the chronic illness of the child requires creating bonds and responsibilities between caregivers and health professionals (9) .…”

Desafios dos alunos com deficiência visual no ensino superior: um relato de experiência

“…Ao perder por completo e definitivamente a visão, as pessoas quase sempre iniciam um processo de fragmentação da sua autoestima, podendo causar depressão, 16,17 perda da capacidade de locomoção sozinha, escolher suas roupas, maquiar-se e até mesmo a alimentação se torna um desafio. 16 Assim como neste estudo, uma pesquisa com alunos com NEE consideraram importante aceitar a deficiência, possuir força de vontade para enfrentar as dificuldades e ter atitudes em direção à autonomia. 85% dos alunos salientaram o apoio e incentivo oferecido pela família para que pudessem estudar.…”

Influência ambiental para a (in)dependência da criança cega: perspectiva da família

“…A cegueira influencia no desenvolvimento das crianças, o que compromete seu autocuidado e mobilidade, além de dificultar suas interações sociais e a aquisição da sua independência (5). Crianças cegas apresentam restrições quanto à locomoção, exploração de locais e objetos, o que dificulta sua participação em atividades em grupo (6), isto é, possuem certa restrição de habilidades e de exploração dos ambientes.…”