Deaf Parents and Pediatric Cochlear Implantation: An Exploration of the Decision-Making Process
Hardonk, Stefan, Daniels, Sarah, Desnerck, Greetje, Loots, Gerrit, Van Hove, Geert, Van Kerschaver, Erwin, Sigurjónsdóttir, Hanna Björg, Vanroelen, Christophe, Louckx, Fred, American Annals of the Deaf
THE STUDY examined factors in deaf parents' decision between cochlear implantation (CI) and traditional hearing aids for their child. The subjects were 6 Flemish children ages 5-9 years with severe/profound congenital hearing loss, with at least 1 deaf parent. The researchers, who conducted thematic content analysis of qualitative data collected through parent interviews, found that with the exception of a family with 1 hearing parent, parents gave priority to Deaf identity, sign language, and ethical issues in deciding between CI and hearing aids. Medical risks were also mentioned. The researchers conclude that the decision-making processes of the parents involved factors that have also been found among hearing parents, as well as aspects that have not been reported to play a role in hearing parents' decision making. A further conclusion is that deaf parents' perspective merits attention in professional practice and empirical research.
Relatively recent changes have created a new context for matters of care related to congenital hearing loss. First of all, the development of reliable methods for assessment of hearing loss in newborn children, such as automated auditory brainstem response assessment, has resulted in reliable screening, and consequently in new possibilities for early care intervention that could improve child development (Nelson, Bougatsos, & Nygren, 2008).
Second, these new and accurate testing methods are increasingly applied to national and hospital-based universal neonatal hearing screening (UNHS) programs (Grill et al., 2005), with widespread early detection of hearing loss being a result. These screening programs consequently have become a basic element of early care intervention (Declau, Boudewyns, Van den Ende, Peeters, & Van den Heyning, 2008; Uus & Bamford, 2006).
Third, cochlear implantation (CI) techniques have greatly improved, and have thus become a type of assistive technology that can support hearing and spoken-language development. Moreover, medical advances have resulted in children receiving implants as early as age 4 months (Anderson et al., 2004; De Raeve, 2005).
The combination of these developments has created a new context for rehabilitation and care, affecting both professionals and parents. From the parental perspective, early detection of hearing loss confronts parents shortly after their child's birth with many care-related questions, such as the choice between traditional hearing aids and CI, which is a major aspect of audiological management.
Different aspects of the impact of this new medical context have been investigated previously. Researchers have given attention to issues related to implementation of UNHS programs (e.g., Cao-Nguyen, Kos, & Guyot, 2007; Grill et al., 2005), the effectiveness of early CI in terms of spoken- and written-language development, and educational achievement (e.g., Geers, 2004; Marschark, Rhoten, & Fabich, 2007; Stacey Fortnum, Barton, & Summerfield, 2006), the effectiveness of bilateral CI (e.g., Basura, Eapen, & Buchman, 2009; Tait et al, 2010), multidisciplinary rehabilitation care (e.g., Fitzpatrick et al., 2007; Hardonk, Desnerck, Loots, Matthijs et al., 2010; McCracken, Young, & Tattersall, 2008), and parental distress and psychological well-being during the early care trajectory (Burger et al., 2005; Spahn, Richter, Burger, Löhle, & Wirsching, 2003).
In the last decade, awareness has also grown with regard to the importance of listening to the voices of parents to learn more about their experiences with congenital hearing loss. Several studies have focused on parental decision-making processes with regard to rehabilitation care and hearing assistive technologies, using mainly quantitative methodological approaches (Archbold, Sach, O'Neill, Lutman, & Gregory 2006; Incesulu, Vural, & Erkam, 2003; Li, Bain, & Steinberg, 2004; Nikolopoulos, Lloyd, Archbold, & O'Donoghue, 2001; O'Neill, Lutman, Archbold, Gregory, & Nikolopoulos, 2004; Steinberg et al. …