Abstract
To investigate the quality of life of caregivers of children and adolescents presenting speech and language disorders from their own perspective. Two groups participated, adding up to 40 subjects. Group 1 was composed by 20 caregivers of 4 to 17 years-old children or adolescents with speech and language disorders, paired by age with the Control Group or 2 that included 20 caregivers of children or adolescents with no speech and language complaints. Data collection was done using: two open questions and the World Health Organization instrument, which was translated and adapted to Portuguese language - the World Health Organization Quality of Life Scale (WHOQOL-BREF). The results were submitted to statistical analysis and the open questions were qualitatively analyzed. The language disorders distribution showed: stuttering (35%), non-neurological (35%), and neurological oral language disorders (30%). In the analysis of the WHOQOL-BREF scores, there were quality of life differences regarding the physical (1.1%), psychological (0.5%), and social relationships (1.8%) domains. Group 1 presented the most dissatisfying quality of life. Concerning the open questions, it presented good and reasonable characteristics and Group 2, good and very good. The clinical routine and children were mentioned as factors that hamper self-care in Group 1. The lowest score of Group 1 in the WHOQOL-BREF was consistent with the open questions results, showing that aspects such as clinical attendance routine and comprehension difficulties influence caregivers' quality of life. The results corroborate that they should be assisted, since they are a group that deserves healthy actions directed to them.
Highlights
The quality of life (QoL) of caregivers of children and adolescents with speech and language disorders may have a direct influence on their participation and involvement in the therapeutic practice
Data were collected with the use of World Health Organization Quality of Life Scale (WHOQOL)-BREF and two open questions: “tell us a little about your QoL” and “the action of the people regarding the speech or language difficulties of your child or adolescent” — the second question applied only to Group 1
The values of four and five correspond to positive satisfaction with the domain being assessed. The application of both the open questions and the WHOQOLBREF occurred in two ways
Summary
The quality of life (QoL) of caregivers of children and adolescents with speech and language disorders may have a direct influence on their participation and involvement in the therapeutic practice. In the context of Speech-Language Pathology, there are few studies with this purpose The interest of such investigation arises from the requirement for health attention of caregivers and the creation of new public policies to provide training and support[17]. This new model is used in different government proposals in Brazil, such as the Family Health Program (FHP), which focuses on the disease, and on all contexts surrounding the individual, including family[18] In this sense, there is a tendency to value family and all the people involved in the health/ disease process, which reiterates the importance of studies like the one proposed here. This study aims to investigate the QoL of caregivers of children and adolescents with speech and language disorders to enhance ways to completely accommodate them sin the Speech-Language Pathology clinic
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