Audiology Telehealth: Efficacy of an online social network for the support of parents of hearing impaired children

• Grant number: 10/13674-1
• Support type: Scholarships in Brazil - Master
• Effective date (Start): March 01, 2011
• Effective date (End): February 28, 2013
• Field of knowledge: Health Sciences - Speech Therapy
• Principal researcher: Deborah Viviane Ferrari
• Grantee: Camila Piccini Aiello
• Home Institution: Faculdade de Odontologia de Bauru (FOB). Universidade de São Paulo (USP). Bauru , SP, Brazil

Abstract

For parents to be able to provide the necessary assistance for their hearing impaired children, they must deal with new situations and feelings, doubts and expectations, which in turn can create stress. Participation in parent groups can propitiate support for these individuals. In this randomized controlled trial, the online social network "Babies' Portal" was created for parents or caregivers of hearing impaired children, cochlear implant candidates, and its efficacy in supporting theses parents was evaluated. Participants were 22 mothers, aged between 18 and 39 years, residing in the Southeast (n=10), South (n=5), Midwest (n=3), North (n=2) and Northeast (n=2) of the country, which were randomly divided into experimental (n=11) and control (n=11) groups. The participants filled out an online form with questions about demographics, Internet usage and the Parental Stress Index - short form (PSI-SF). The PSI-SF assesses the parental general stress from a model with three factors (subscales): Parental Distress, Difficult Child and Parent-Child Dysfunctional Interactions. Only the experimental group had access to the online social network. Both groups filled the PSI-SF a second time, three months after the first application, and the experimental group also answered questions evaluating utility and participation in the social network. The posts on the social network were rated by two independent judges regarding general themes and mechanisms of self-help. It was found that 72% of participants accessed the internet several times a week, with access done mostly in their homes. In the first application, the experimental group had lower mean PSI-SF scores than the control group, however, such differences between groups were not significant. On average, the stress levels for both groups were similar to those found in the literature for parents of children with typical development and normal hearing. However, for 22% of the participants stress levels were high, suggesting the need for intervention. The same pattern of results was obtained in the second application of the PSI-SF. The intra-group analysis showed no difference in total scores and subscales of the PSI-SF between the two applications, for both groups, except for the subscale "Defensive Response" in which there was a decrease in score for the control group. However, this difference was not clinically significant. A Kappa coefficient of 0.89 was obtained from the analysis of the postings made by judges indicating high concordance between them. The mostfrequent posts themes was related to dimension "other commnets" (43.8%), with personal information and expressions of belief in God, followed by experience with hearing loss (39.6%), especially in relation to devices used by the child. Regarding the mechanisms of self-help, it was observed a higher frequency of posts with exchanges of experiences (29.2%) and expression of gratitude (18.6%). Although there were many postings with health related information these were not imprecise or of negative nature. Participants in the experimental group reported that they would like to have a greater participation in the social network since they considered it an important mean of exchanging information and experiences with other parents and health professionals. The limited availability of time was often cited as an obstacle to participation. The preferred types of participation were writing about the subject under discussion and reading other people's postings. Participation in social networking "Babies` Portal" did not diminish the overall parental stress. However, the content of posts and evaluation of participants indicated the potential of this network to provide support for parents of hearing impaired children cochlear implant candidates. Further studies with a larger number of participants, assessing the effects of social networks on the stress contextually related to hearing impairment are needed.