Support network for families of children and adolescents with visual impairment: strengths and weaknesses.

Mayara Caroline Barbieri,Regina Aparecida Garcia de Lima,Renata Olzon Dionysio de Souza,Monika Wernet,Gabriela Van Der Zwaan Broekman,Giselle Dupas

doi:10.1590/1413-812320152110.19562016

Mayara Caroline Barbieri, Regina Aparecida Garcia de Lima + Show 4 more

Open Access

https://doi.org/10.1590/1413-812320152110.19562016

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Abstract

This study aimed to understand the interactions established between social support networks and families that have children and adolescents with visual impairment, in two different cities in the state of Sao Paulo, Brazil. This was a qualitative, descriptive study with symbolic interactionism as a theoretical framework. A genogram, ecomap and semi-structured interviews with 18 families were used. The method adopted for data analysis was narrative analysis. Two themes were found: potentials derived from the relationship with the support network, and, counterpoints in the support network. The family members accessed other members of their own family, friends, spiritual and cultural activities, health services, government institutions, and philanthropic organizations as support networks. The weakness in health services support is an obstacle to comprehensive healthcare for children and adolescents living in city A. In city B, other possibilities exist because it has a reference service. Despite the weaknesses in the support network in both cities, the family articulates and develops a foundation so that they can provide the best situation possible for their child or adolescent. It is up to health professionals to provide support to families and empower them to care for their members.

Highlights

Visual capability can be divided into three functional levels: normal vision, low vision, and blindness
The 18 interviewed families had 21 children and adolescents with visually impaired (VI); three of them have two members with disabilities; of these only 13 participated in the interview - five were participating in school activities, and three did not feel the desire to interact during the interview, and continued playing
Two participants worked in informal services, and two received disability compensation from the National Institute of Social Security (INSS)

Summary

Introduction

Visual capability can be divided into three functional levels: normal vision, low vision (moderate and severe visual impairment), and blindness. For the individual to be considered visually impaired (VI), specialized medical interventions must not be able to provide him/her with functional vision again[1]. People who have zero or decreased vision, with limits to their daily activities, are classified as visually impaired[2]. This condition requires constant adjustments, as needs appear in the daily life of the visually impaired and their families. The changes cause family demands that did not exist previously, affecting: intrapersonal and interpersonal relations; activities of daily living; interaction with health care services; and, readjustments in financial, occupational, personal and social levels[3]. Families of children and adolescents with VI are faced with new responsibilities, and with changing and diverse adaptations[4]

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