Cochlear implantation for a child with cochlear nerve deficiency: Parental perspectives explored through narrative

Abstract

Findings highlight the central place of parental needs and perspectives in decision-making regarding a CI, particularly in the context of uncertain outcomes.

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

“…Respondents in the quantitative studies ranged from 19 (Steinberg et al, 2000) to 247 parents (Hyde, Punch, & Komesaroff, 2010). Qualitative studies ranged from case-study interviews with the parents of a single child (Kotjan, Purves, & Small, 2013) to interviews with 216 parents (Sach & Whynes, 2005). Only one study examined parental decision-making for a child with a unilateral hearing loss, involving 23 caregivers of children with unilateral aural atresia (Graham, Haworth, Chorney, Bance, & Hong, 2015).…”

“…Parents were not always clear about their available options (Steinberg et al, 2003;Johnston et al, 2008;Mulla et al, 2013;Merugumala et al, 2017) or they felt that their only option was CI (Sach & Whynes, 2005;Hyde et al, 2010). 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).…”

“…Hyde et al ( 2010) indicated that parents often were not made aware of other risks, such as adverse social, psychological, and language outcomes. In addition, parents acknowledged that they were not sure they would have been receptive to learning about potential risks or negative outcomes at the time they were making their decision (Hyde et al, 2010;Kotjan et al, 2013).…”