Pediatric Cochlear Implantation: A Qualitative Study of Parental Decision-Making Processes in Flanders, Belgium
Hardonk, Stefan, Bosteels, Sigrid, Desnerck, Greetje, Loots, Gerrit, Van Hove, Geert, Van Kerschaver, Erwin, Vanroelen, Christophe, Louckx, Fred, American Annals of the Deaf
FACTORS CONTRIBUTING to parents' decision when they choose between cochlear implantation (CI) and traditional hearing aids for their child were examined. The subjects were children with severe/profound hearing loss, born 1999-2001, registered in the universal neonatal hearing screening program in the Flanders region of Belgium. Qualitative data collected retrospectively from parents were subjected to thematic content analysis. In their responses to professional advice, parents were segmented into 3 groups: (a) those whose primary considerations were the importance of oral language development and the relative potential of CI and traditional hearing aids; (b) those for whom alternative factors (e.g., medical risks, ethical issues) were paramount, even in the face of professional advocacy of CI; (c) those who followed professional advice against CI. The researchers conclude that care professionals should be sensitive to the impact of their advice and other factors in parental decision making.
When a child is born with a congenital hearing loss, parents need to make decisions about the care of that child. In the last decade of the 20th century, the context of parents' decision-making processes drastically changed under the influence of two developments.
First, new testing methods, such as automated auditory brainstem response (AABR) testing, introduced a reliable way of screening newborn children for hearing loss. As a consequence, parents could be informed about any hearing loss a few weeks after their child's birth, which would make it possible to get an early start on specialized care and consequently to enhance the child's development (Nelson, Bougatsos, & Nygren, 2008).
Second, techniques in cochlear implantation (CI) as a means of improving hearing capacity and oral development had greatly improved, while the age of first implantation had decreased dramatically. Today children can receive their first cochlear implant at 4-6 months of age (Anderson et al., 2004).
The possibility of early care intervention offers new opportunities for the oral development of children with a congenital hearing loss. At the same time, it means that shortly after a child's birth, parents are faced with many difficult care-related questions, particularly with a choice between traditional hearing aids and either CI or the use of no hearing aids at all.
Different factors make it necessary to gain more insight into parental decision-making processes with regard to this decision. First of all, choosing between traditional hearing aids and CI is a complex issue for parents who generally lack any previous experience of deafness whatsoever (U, Bain, & Steinberg, 2003). Furthermore, this decision is closely related to the desired long-term outcome for the deaf child, which, in turn, depends on which communication methods the child will be using (Li et al., 2003; Okubo, Takahashi, & Kai, 2008).
Strong debate has evolved in the literature around medical, sociological, psychological, educational, and ethical aspects relating to CI (Marschark, 1996). Concerning outcomes for the child, such as the ability to develop a better level of hearing and oral communication, most scientific research (e.g., Declau, Boudewyns, Van den Ende, Peeters, & van den Heyning, 2008; Eisenberg et al., 2006; Geers, 2004; Hehar, Nikolopoulos, Gibbin, & O'Donoghue, 2002; Nikolopoulos, Lloyd, Archbold, & O'Donoghue, 2001; O'Donoghue, 1999; Stacey, Fortnum, Barton, & Summerfield, 2006) shows evidence in favor of CI and early implantation. Other studies have focused on different outcomes and different communication modalities. In their review of studies on reading skills among children with cochlear implants, Marschark, Rhoten, and Fabich (2007) concluded that a lack of consistent findings could be explained by methodological issues in the study designs. As far as the development of communication among preschool children with implants who use sign language is concerned, Preisler, Ahlström, and Tvingstedt (1997) found that oral language outcomes were weak. …