Mothers of Deaf Children in the 21st Century. Dynamic Positioning Between the Medical and Cultural–Linguistic Discourses

Abstract

Traditional research examining the communicational choices made by families with deaf children tends to emanate from the premise that families engage with either of the two grand discourses on deafness (i.e., the medical or cultural-linguistic perspective). This study investigated hearing mother's engagement with the educational options for their child from a dynamic, poststructural perspective. Three Flemish mothers were interviewed in-depth at the child's ages of 6, 9, 12, 18, and 24 months. The data were analyzed within a theoretical model that describes the positioning process of the mothers. This method yielded alternative explanations for former findings concerning mothers' decision-making processes, especially the difficulty of learning sign language as a second language in an effort to provide a bilingual-bicultural education, and highlighted the importance of having rich experiences. It further showed that a bilingual-bicultural position was scarcely available and poorly supported for these mothers. These findings are discussed in relation to recent international consensus statements on best practices in early intervention.

Parental Decision-Making and Deaf Children: A Systematic Literature Review

“…One study investigated decision-making following maternal suspicion of hearing loss in low-income families attending a facility in Southern India (Merugumala, Pothula, & Cooper, 2017). Four studies specified that the children had been diagnosed through newborn hearing screening (Bruin & Nevøy, 2014;Hardonk et al, 2010;Matthijs et al, 2017;Uus et al, 2015). Last, while most studies provided some details about the child/children concerned, 17 (46%) only reported on the participants' relationship to the child, and five (16%) on the relationship to the child and hearing status of the participant, despite the views and experiences of parents themselves being the foci of the studies.…”

“…Two studies considered parental decisionmaking regarding a bone-anchored device for their child (Graham et al, 2015;Mulla et al, 2013); three papers evaluated decisions regarding communication modality and oral bilingualism (Crowe, Fordham, et al, 2014;Crowe, McLeod, et al, 2014;Guiberson, 2013); and one investigated parent choice of cochlear implant brand (Clamp, Rotchell, Maddocks, & Robinson, 2013). One study, over a series of interviews, looked at the changing values of parents and the realities of implementing a decision (Matthijs et al, 2017). Finally, six studies compared parents who had implemented an option (e.g., CI) with those who chose not to implement the same option, and the reasons for their decision (Chang, 2017;Graham et al, 2015;Hardonk et al, 2010;Kluwin & Stewart, 2000;Okubo et al, 2008;Ramsden, Papaioannou, Gordon, James, & Papsin, 2009 ).…”

“…Several papers indicated that families felt they had sufficient information to make the focal decision (Fitzpatrick et al, 2011;Incesulu et al, 2003;Johnston et al, 2008;Penaranda et al, 2011); however, others indicated that the parents felt they needed, or sourced, additional information (Alkhamra, 2015;Chang, 2017;Crowe, Fordham, et al, 2014;Decker et al, 2012;Fitzpatrick et al, 2011;Guiberson, 2013;Hardonk et al, 2010;Kluwin & Stewart, 2000;Hardonk et al, 2010;Kotjan et al, 2013;Steinberg et al, 2003). Other studies indicated that information was not balanced, or that there was conflicting advice on the best approach from professionals, which complicated their decision-making (Bruin & Nevøy, 2014;Eleweke & Rodda, 2000;Jackson et al, 2008;Kotjan et al, 2013;Matthijs et al, 2017;Mulla et al, 2013;Nelson, Herde, Munoz, White, & Page, 2017;Stroebel & Swanepoel, 2014;Uus et al, 2015;Wheeler et al, 2009).…”

“…One study investigated how social influences and networks affected parents' values and decisions about whether to implant or not (Chang, 2017). Three papers indicated how some parents made decisions contrary to professional recommendations because their preferences and lived experience were not understood or explored (Bruin & Nevøy, 2014;Hardonk et al, 2010;Matthijs et al, 2017). One paper mentioned the impact of religious beliefs (Steinberg et al, 2003), and the cultural contexts influencing parental decision-making were also reported (Borum, 2012;Merugumala et al, 2017;Steinberg et al, 2003).…”

“…One study did discuss the barriers to shared decisionmaking when parents were unable to access information that met their cultural and linguistic needs (Steinberg et al, 2003). The concept of informed choice or informed decision was mentioned in a number of studies but there was minimal discussion about what an informed choice was and how it might be achieved (Alkhamra, 2015;Chang, 2017;Crowe, Fordham, et al, 2014;Crowe, McLeod, et al, 2014;Eleweke & Rodda, 2000;Hardonk et al, 2010;Hyde et al, 2010;Matthijs et al, 2017;Mulla et al, 2013;Okubo et al, 2008;Peñaranda et al, 2011;Steinberg et al, 2003).…”