Concerns of Indian Mothers with Children Having Severe-to-Profound Hearing Impairment at Diagnosis and after 1–3 Years of Therapy

Abstract

Counseling training in graduate programs continues to be underrepresented. If parental queries are not addressed adequately, they keep visiting one doctor after another. Objective. The aim of the study is to identify maternal needs of children with hearing impairment at two stages of habilitation, that is, just after diagnosis (group I) and after receiving 1 to 3 years of language therapy (group II). Methods. Two groups of mothers were asked to speak their queries about aural habilitation of their children. Queries were recorded, summarized, and categorized as per their priorities. Results. Group I mothers wanted to know about how the child would learn to listen and speak (45%), causes of hearing loss (33.7%), understanding the ear and hearing (10.2%), understanding the audiogram (7%), and coping with emotional aspects of hearing loss (5%), while group II parents had priorities concerning speech development (24.5%) followed by child independence and employment (17.3%), schooling (15.6%), problem behaviors (11%), amplification device (9.4%), duration of therapy (8%), future of the child (8%), and questions about how can my child get adjusted to the “normal” world (6%). Conclusions. Culture- and language-specific materials to explain these issues need to be developed.

Development of Hindi Early Speech Perception Test

“…Similarly, young children are not able to read or write because limited academic skills. It is very important to make sure that test items are selected from their vocabulary list only to correct interpretation of speech perception ability [19][20][21]39,41,54,58,60,68,77,87,85]. Speech perception ability of young children only can be inferred by child response.…”

Societal impact of bilirubin-induced hearing impairment in resource-limited nations

“…Typically, the confirmation of an auditory impairment is followed by a sequence of social and emotional transformations starting with shock and bewilderment, through a period of doubt and denial, to a final acceptance of the child's status. Poor handling of the diagnostic process in itself may exacerbate the emotional and psychological burden for the family [62]. In some traditional communities where unfavorable and superstitious beliefs towards childhood disabilities prevail, the diagnosis of an auditory impairment may be attributed to sorcery and other supernatural factors regardless of the etiology, causing further emotional torment for the parents [57].…”

“…Families may also be troubled by the ensuing and inevitable social stigma that will follow when the diagnosis of an auditory impairment becomes publicly apparent [55e57,63]. One study from India also found that, at diagnosis, mothers of infants with severeto-profound hearing impairments were concerned about how to cope with the emotional aspect of hearing loss [62].…”

“…After 1e3 years of enrolment into an early intervention program, one study found that parents of children with severe-to-profound hearing loss were deeply concerned about the future of the child in terms of independence and employment prospects [62]. Studies have also shown that having a child with disability increases the likelihood of parental separation or divorce, mothers having to forego work, reduced social participation and siblings sharing in the responsibility for care [66,67].…”

Supporting families of children with hearing loss transitioning to early intervention

“…The results of the analysis of the parents' responses reported that families may experience strong emotions, including denial, sadness, and shock at the time of diagnosis of hearing loss, and therefore may need counselling and adequate emotional support. A need for emotional support to deal with the challenges associated with hearing loss has been reported in international studies too (Alqahtani, 2017;Davids & De Jager, 2018;Rout & Khanna, 2012). However, the majority (85%) of Australian families (n = 445) who completed a written survey in Scarinci et al's (2018) mixed methods study reported that they were satisfied with the emotional and personal support they received, and only one fifth of the families were not satisfied with the emotional support of some professionals and mostly from the diagnostic audiologists and General Practitioners.…”