“Tell Me About Your Child”: A Grounded Theory Study of Mothers' Understanding of Language Disorder

Abstract

Purpose The purpose of this study was to generate a theory grounded in data explaining caregivers' understanding of their child's language disorder and the perceived role of speech-language pathologists in facilitating this knowledge. Method This study employed grounded theory as a conceptual framework. Qualitative data were generated based on semistructured interviews conducted with 12 mothers of children who had received speech-language pathology services. Results The following themes emerged from the data analysis: (a) Many mothers reported receiving confusing or irrelevant diagnostic terms for language disorder, (b) mothers of children with language disorders were distressed about their children's language problems, (c) mothers did not always trust or understand their children's speech-language pathologist, and (d) mothers were satisfied with the interventions their child had been receiving. Mothers described their children's language disorder using a total of 23 labels, most of which were not useful for accessing meaningful information about the nature of their child's communication problem. Generally, mothers reported they did not receive language-related diagnostic labels from speech-language pathologists for their child's language disorder. Conclusions Two theories were generated from the results: (a) Lack of information provided to mothers about their child's language disorder causes mothers psychological harm that appears to be long lasting. (b) Difficulties in successfully relaying information about language disorders to parents result in negative perceptions of speech-language pathology. Implications and future directions are discussed. Supplemental Material https://doi.org/10.23641/asha.12177390

How We Fail Children With Developmental Language Disorder

“…Recent research suggests that barriers do exist. In extensive interviews with mothers of children who have DLD, it is clear that SLPs in school settings often give parents vague labels (e.g., language problem), irrelevant labels (e.g., speech problem), or no diagnostic label at all (Ash et al, 2020). Not surprisingly, the parents are confused.…”

Exploring Parental Perspectives of Childhood Speech and Language Disorders Across 10 Countries: A Pilot Qualitative Study

“…For example, Archibald et al (2019) reported that many Canadian speech-language therapists do not provide a label for a child's language disorder when sharing findings with the parents. Ash et al (2020) reported that some U.S. mothers reported receiving confusing and irrelevant diagnostic terms for language disorder. Furthermore, in parental interviews conducted by Roulstone and Lindsay (2012), none of the parents used a diagnostic label in relation to the child's communication impairment but used other labels, such as attention-deficit/hyperactivity disorder, Asperger's, or dyslexia, when referring to their children's needs.…”

“…Improved understanding of parental views and experiences are important because they inform intervention and policy and enhance outcomes. Much of the research on parental perspectives has been conducted in English-speaking countries (i.e., Ash et al, 2020;Carroll, 2010;Davies et al 2016;Lyons et al, 2010;Roulstone et al, 2016). In the United Kingdom, Roulstone and Lindsay (2012) found that the desired outcomes of parents for their children with speech, language, and communication needs were social acceptance and independence, rather than outcomes specifically related to their children's communication.…”

“…However, parents may also be concerned that they are responsible for their child's LD, revealing worries that perhaps they did not give their children enough attention, or that they had not been patient enough with them (Roulstone et al, 2015). In a U.S. study, Ash et al (2020) also reported that mothers reported "receiving confusing or irrelevant diagnostic terms for language disorder" (p. 826) and that mothers were "distressed about their children's language problems" (p. 827).…”

Impact of language disorders on children’s everyday lives from 4 to 13 years: Commentary on Le, Mensah, Eadie, McKean, Schiberras, Bavin, Reilly and Gold (2020)

“…Although these labels are generally accepted by researchers and practitioners, they are still not well known compared with other neurodevelopmental conditions like ADHD, autism spectrum disorder or dyslexia. There is evidence to suggest that even parents of children with language disorders may not be given or may not use these labels (Ash, Christopulos, & Redmond, 2020). A further challenge relates to the cut-off points used to define language disorders and determine eligibility for service provision.…”