Family Quality of Life Following Early Identification of Deafness

Abstract

Purpose Family members' perceptions of their quality of life were examined following early identification of deafness in children. Method A questionnaire was used to solicit ratings of satisfaction from the family members of 207 children who were deaf and younger than 6 years of age. Results Results indicated that families were generally satisfied with the areas of family life surveyed. Descriptive analysis suggested lower satisfaction ratings in the area of emotional well-being. Families also reported that their child’s deafness had the largest impact on their emotional well-being. Family members of children using oral communication with a cochlear implant reported higher satisfaction with their child’s speech production and perception outcomes than family members of children using hearing aids alone. Implications We recommend that service providers and early hearing detection and intervention program coordinators consider additional supports for family well-being following the early identification of deafness in children.

Adaptação Cultural da Escala de Qualidade de Vida Familiar (Family Quality of Life Scale) para o Português Brasileiro

“…Therefore, the profile designed for these families is that most of them have a monthly income of one-and-a-half minimum wage, ended high school, and did not work. These findings are different from another study (17) , in which most of the participants had completed higher education, worked, and had a considerably higher income.…”

“…In this study, despite the particularities of domain dissatisfactions and a different family profile, families reported being satisfied with all areas of family life when the general FQL was computed, as seen in other investigations (17,18) . Thus, we believe that choosing this scale to evaluate FQL with deaf children showed us the process of role transformation within the family structure owing to the discovery of a deaf child.…”

“…When they do not have the opportunity of going to a parents' group, they do not receive counseling or reception or they even do not have anyone to talk to in order to clarify their doubts; so, these parents exhibit isolated thoughts, increasing false beliefs, with difficulties both in the child and family's development (17,(19)(20)(21)(22)(23) . Data from this domain (support to the disability-related support) show that parents are not completely involved with their child's routine, and it includes items of: school stimulation, over which the mothers report their dissatisfaction, because they mention that schools do not give the proper attention to their children such as teaching literacy in the right time; stimulation in the family environment, over which part of the mothers also express dissatisfaction, because they do not have enough time to give the proper attention to their child when they arrive home; family stimulating the child in making new friends, because some parents are not used to going out with their children; involvement of parents with service providers, which is the only item where good satisfaction is unanimous.…”

“…The fourth aspect to be discussed is the level of satisfaction for each domain of the scale, which registers that the greatest satisfaction is family interaction, and the lowest level of satisfaction is associated with emotional well-being (12,(17)(18)(19) . The family interaction domain comprises items about support that each family member provides to the other, the items include the time the family spends together, the opening they have to talk to each other, the solution of problems in groups, family support to reach personal goals, demonstration of affection, and the way how they deal with the highs and lows of life.…”

“…Following emotional well-being, the lowest satisfaction index was registered to the disability-related support, which is a very commonly discussed theme among experts (17)(18)(19) , because this is the domain that discusses how parents deal with their children's deafness every day. When they do not have the opportunity of going to a parents' group, they do not receive counseling or reception or they even do not have anyone to talk to in order to clarify their doubts; so, these parents exhibit isolated thoughts, increasing false beliefs, with difficulties both in the child and family's development (17,(19)(20)(21)(22)(23) .…”