Deaf Parents and Pediatric Cochlear Implantation: An Exploration of the Decision-Making Process

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Hardonk, S., Daniels, S., Desnerck, G., Loots, G., Van Hove, G., Van Kerschaver, Sigurjónsdóttir, H. B., Vanroelen, C., & Louckx, F. (2011). Deaf parents and pediatric cochlear implantation: An exploration of the decision-makingprocess. American Annals of the Deaf 156 (3), 290–304.

DEAF PARENTS AND PEDIATRIC COCHLEAR IMPLANTATION:AN EXPLORATION OF THE DECISION-MAKING PROCESS

Relatively recent changes have createda new context for matters of care re-lated to congenital hearing loss. Firstof all, the development of reliablemethods for assessment of hearingloss in newborn children, such as au-tomated auditory brainstem responseassessment, has resulted in reliablescreening, and consequently in newpossibilities for early care interventionthat could improve child development(Nelson, Bougatsos, & Nygren, 2008).Second, these new and accurate

testing methods are increasingly ap-plied to national and hospital-baseduniversal neonatal hearing screening(UNHS) programs (Grill et al., 2005),with widespread early detection ofhearing loss being a result. Thesescreening programs consequently havebecome a basic element of early careintervention (Declau, Boudewyns, Vanden Ende, Peeters, & Van den Heyning,2008; Uus & Bamford, 2006).Third, cochlear implantation (CI)

techniques have greatly improved, andhave thus become a type of assistivetechnology that can support hearingand spoken-language development.Moreover, medical advances have re-sulted in children receiving implants asearly as age 4 months (Anderson et al.,2004; De Raeve, 2005).The combination of these develop-

ments has created a new context forrehabilitation and care, affecting bothprofessionals and parents. From theparental perspective, early detectionof hearing loss confronts parentsshortly after their child’s birth withmany care-related questions, such asthe choice between traditional hearingaids and CI, which is a major aspect ofaudiological management.Different aspects of the impact of

this new medical context have been in-vestigated previously. Researchershave given attention to issues relatedto implementation of UNHS programs(e.g., Cao-Nguyen, Kos, & Guyot, 2007;

HE STUDY examined factors in deaf parents’ decision between cochlearimplantation (CI) and traditional hearing aids for their child. The sub-jects were 6 Flemish children ages 5–9 years with severe/profound con-genital hearing loss, with at least 1 deaf parent. The researchers, whoconducted thematic content analysis of qualitative data collectedthrough parent interviews, found that with the exception of a familywith 1 hearing parent, parents gave priority to Deaf identity, sign lan-guage, and ethical issues in deciding between CI and hearing aids.Medical risks were also mentioned. The researchers conclude that thedecision-making processes of the parents involved factors that have alsobeen found among hearing parents, as well as aspects that have notbeen reported to play a role in hearing parents’ decision making. A fur-ther conclusion is that deaf parents’ perspective merits attention in pro-fessional practice and empirical research.

STEFAN HARDONK, SARAHDANIELS, GREETJE DESNERCK,GERRIT LOOTS, GEERT VAN HOVE,ERWIN VAN KERSCHAVER, HANNA BJÖRG SIGURJÓNSDÓTTIR,CHRISTOPHE VANROELEN, ANDFRED LOUCKX

HARDONK IS A RESEARCHER, DEPARTMENT OF MEDICALSOCIOLOGY, VRIJE UNIVERSITEIT BRUSSEL, BRUSSELS,BELGIUM. DANIELS IS A RESEARCHER, DEPARTMENT OFSOCIOLOGY, VRIJE UNIVERSITEIT BRUSSEL. DESNERCKIS A SENIOR RESEARCHER, HOWEST UNIVERSITYCOLLEGE, BRUGES, BELGIUM. LOOTS IS A PROFESSOR,CENTER FOR INTERPERSONAL, DISCURSIVE, ANDNARRATIVE STUDIES, DEPARTMENT OF CLINICALAND LIFESPAN PSYCHOLOGY, VRIJE UNIVERSITEIT;DEPARTMENT OF SPECIAL EDUCATION, UNIVERSITY OFGHENT, BELGIUM; AND DEPARTMENT OF PSYCHOLOGY,RESEARCH INSTITUTE FOR BEHAVIORAL SCIENCES,BOLIVIAN CATHOLIC UNIVERSITY “SAN PABLO,” LA PAZ,BOLIVIA. VAN HOVE IS A PROFESSOR, DEPARTMENT OFSPECIAL EDUCATION, UNIVERSITY OF GHENT. VANKERSCHAVER IS A SENIOR MEDICAL OFFICER ANDSCIENTIFIC ADVISER, KIND EN GEZIN [CHILD AND FAMILY,A PUBLIC CHILD-WELFARE AGENCY SERVING BELGIUM’SFLEMISH COMMUNITY]. SIGURJÓNSDÓTTIR IS ANASSOCIATE PROFESSOR, CENTER FOR DISABILITYSTUDIES, UNIVERSITY OF ICELAND, REYKJAVÍK.Vanroelen is a senior researcher, Department ofMedical Sociology, Vrije Universiteit Brussel.Louckx is a professor, Department of MedicalSociology, Vrije Universiteit Brussel.

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Grill et al., 2005), the effectiveness ofearly CI in terms of spoken- and writ-ten-language development, and edu-cational achievement (e.g., Geers,2004; Marschark, Rhoten, & Fabich,2007; Stacey, Fortnum, Barton, & Sum-merfield, 2006), the effectiveness ofbilateral CI (e.g., Basura, Eapen, &Buchman, 2009; Tait et al., 2010), mul-tidisciplinary rehabilitation care (e.g.,Fitzpatrick et al., 2007; Hardonk,Desnerck, Loots, Matthijs et al., 2010;McCracken, Young, & Tattersall, 2008),and parental distress and psycho -logical well-being during the earlycare trajectory (Burger et al., 2005;Spahn, Richter, Burger, Löhle, &Wirsch ing, 2003).In the last decade, awareness has

also grown with regard to the im -portance of listening to the voices ofparents to learn more about their experiences with congenital hearingloss. Several studies have focused onparental decision-making processeswith regard to rehabilitation care andhearing assistive technologies, usingmainly quantitative methodologicalapproaches (Archbold, Sach, O’Neill,Lutman, & Gregory, 2006; Incesulu,Vural, & Erkam, 2003; Li, Bain, & Stein-berg, 2004; Nikolopoulos, Lloyd, Arch-bold, & O’Donoghue, 2001; O’Neill,Lutman, Archbold, Gregory, & Nikolo -poulos, 2004; Steinberg et al., 2000).In a number of other studies, a quali-tative approach using semistructuredinterviews was applied for the analy-sis of the parental decision-makingprocesses regarding CI and rehabilita-tive care (Christiansen & Leigh, 2004;Hardonk, Bosteels et al., 2010; Har -donk, Desnerck, Loots, Matthijs et al.,2010; Hardonk et al., 2011; Kluwin &Stewart, 2000; McCracken et al., 2008;Okubo, Takahashi, & Kai, 2008). Thesequalitative studies have yielded deepinsights into different parental motiva-tions and their interplay, thus con-tributing to advances in this matter of

importance for audiology and otorhi-nolaryngology.However, the views and positions

of deaf parents—including but notlimited to culturally Deaf parents—were not an explicit part of the re-search question in any of the pastempirical studies on parental experi-ences and decision-making processes.Moreover, in discussing their results,researchers have given little or no at-tention to the potential differencesbetween deaf and hearing parents.Only a few studies have specificallyaddressed the perspectives and expe-riences of deaf parents, and most ofthese have lacked empirical evidenceto support different positions (see,e.g., Christiansen & Leigh, 2004; Stein,Barnett, & Padden, 2001; The Cy-berDeaf, 1999). This characterizationis equally applicable to a number ofpublished works with regard to ethi-cal issues related to the treatment ofhearing loss as a medical condition(Balkany et al., 2002; Balkany, Hodges,& Goodman, 1996; Lane, 2005; Lane &Bahan, 1998; Lane & Grodin, 1997;Marschark, 1996; Nunes, 2001).Given the state of the art in the sci-

entific literature, it is in the first placenecessary to investigate further theparental decision-making processesregarding CI using a qualitative ap-proach, because this enables an un-derstanding of how parents viewreality and how their views affect theirdecisions. Moreover, existing researchshould be complemented by directingmore attention to the specific posi-tion of deaf parents in this matter, in-cluding the experiences of parentswho decided to use traditional hear-ing aids. The relevance of insight intohow parents in general and deaf par-ents in particular perceive issues of CIand hearing aids is not limited to theacademic field; such insight can alsohelp to enable care professionals whowork with deaf parents to provide

support that is adequate to meet theseparents’ needs. To date, scientific re-search and professional practice havebeen largely based on insights fromquantitative studies among hearingparents; with regard to deaf parents,assumptions exist that have not beenthoroughly investigated. An examplecan be found in a contribution to theliterature by Obasi (2008), who statesthat deaf parents generally oppose CIwithout providing any reference toempirical evidence. The present arti-cle has its basis in addressing this la-cuna in the existing body of scientificresearch.Data collection for the present

study was conducted in Flanders, theFlemish-speaking region of Belgium,which for several reasons can be con-sidered an interesting setting for theanalysis of decision-making processesregarding CI among deaf parents. Firstof all, in 1998 Flanders pioneered ahighly effective UNHS program basedon assessment of automated auditorybrainstem response (Thompson et al.2001; Verhaert, Willems, Van Ker-schaver, & Desloovere, 2008). The pro-gram has a high ratio of coverage in thetarget population—that is, the ratio oftested versus nontested newborn chil-dren in the period 1999–2001 was con-stantly above 90% (Van Kerschaver &Stappaerts, 2000, 2001, 2003). Second,services for early care are widely avail-able in Flanders, with many of themhaving been registered as part of thecertification process for UNHS pro-grams. Among these services, multidis-ciplinary rehabilitation centers andear-nose-throat (ENT) departments inhospitals are key care providers. Themultidisciplinary rehabilitation centersfocus on further diagnosis as well asmultidisciplinary care, fitting of tradi-tional hearing aids, CI referral, andadministrative support (Hardonk,Bosteels et al., 2010). The ENT depart-ments concentrate on diagnosis, audi-

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ological care, and CI. Third, the Flem-ish CI centers have great expertise inCI at early ages. Moreover, from a fi-nancial point of view, CI is highly ac-cessible, because it is fully covered byBelgian public health insurance (RIZIV,2010). Fourth, as a consequence of theaspects we have mentioned, early careintervention has become widespreadin Flanders, leading to—for example—an increasing number of childrenwith congenital hearing loss being im-planted in the first year of life (DeRaeve, 2005). However, there exists agrowing political awareness with re-gard to the specific characteristics ofthe Deaf community as a minority,which, for example, resulted in 2006in legislation in which Flemish SignLanguage was recognized as an offi-cial language.

Aim of the StudyThe central aim of the present studywas to examine the decision-makingprocess from deaf parents’ perspec-tive regarding the choice betweenadopting CI or traditional hearingaids for their deaf child. The descrip-tion of relevant factors is based on asubject-oriented inductive qualitativeapproach.

MethodStudy Design and ParticipantsIn the present article, we report on aqualitative study based on descriptiveanalysis of interviews with parents ofchildren with a congenital hearingloss, living in the Flemish communityin Belgium. The choice of a qualitativestudy design followed from the natureof the objectives. The description ofrelevant elements in deaf parents’ de-cision making regarding CI and tradi-tional hearing aids can be consideredan effort to achieve in-depth sociolog-ical insight into a relatively underde-veloped field. A phenomenologicalqualitative approach leads to under-

standing of parents’ experiences andprovides insight into how parents at-tach meaning to a phenomenon. Theapproach is respectful of the way indi-viduals perceive the reality within agiven context, and it can show bothsimilarities and differences betweenexperiences of different persons (Sil-verman, 1993). However, it impliesthat no causal relationships otherthan those explicitly reported by theparents themselves can be reported(N. Fielding & Thomas, 2001).The first criterion for inclusion in

the present study was that a childmust be deaf with no additional dis-abilities. Second, given the objectiveof the study, only families with at leastone deaf parent were included in thesample. Third, the research popula-tion was selected based on two clearlydefined categories of minimum hear-ing loss (HL): 71–90 dBHL (severe)and greater than 90 dBHL (profound).We found it relevant to also includechildren with residual hearing and se-vere levels of hearing loss, given thatCI is a relatively new phenomenon inthose groups that has sparked muchdebate (Eisenberg, Iler Kirk, SchaeferMartinez, Ying, & Miyamoto, 2004;Fitzpatrick et al., 2006, 2009).Because the birth year range for in-

clusion was defined as 1999–2004, allchildren in the present study were be-tween 5 and 9 years old at the time ofthe interviews. Because a retrospectiveapproach was used in data collection,only children born before 2004 wereincluded to allow for the analysis of suf-ficiently long postscreening care trajec-tories. The lower end of the range wasset at 1999 because the Flemish UNHSprogram was first implemented in thatyear (Van Kerschaver, Boudewyns,Stappaerts, Wuyts, & Van de Heyning,2007).Families were recruited through

collaboration with important organi-zations in the Deaf community. The

first recruitment channel was Fevlado(the Federation of Flemish Organiza-tions for the Deaf), which is a key in-stitution in the Deaf community,providing services and expertise andadvocating on behalf of the interestsof the Deaf community. The secondchannel was a cooperative initiative,VGT Doe Mee, whose members in-clude Fevlado, VLOK-CI (an orga -nization of parents of children with a cochlear implant), and VlaamsGebarentaalcentrum (the Center forFlemish Sign Language). These organ-izations provide significant access tothe Deaf community; consequently, allfamilies in the study were active mem-bers of the Flemish Deaf community.To guarantee privacy, families were

contacted by the collaborating organ-izations. Only after the parents ap-proved their participation in thepresent study were they contacted di-rectly. A reminder was sent to nonre-sponders after approximately 1 month.The inclusion criteria were checked us-ing the UNHS program database.Purposeful sampling was applied in

the sampling process. This method isaimed at gathering as much informa-tion as possible about the research is-sue by maintaining a high degree ofsocial diversity and selecting informa-tion-rich cases (Bunne, 1999; Patton,1990). We must note that the limitedprevalence of congenital hearing loss,approximately 1.4 births per 1,000(Mehl & Thomson, 2002), in combina-tion with the fact that only around 5% of congenitally deaf children have at least one deaf parent, meantthat the research population for thestudy would necessarily be small.Moreover, on the basis of previous re-search (Hardonk, Bosteels, et al.,2010), we expected recruitment to bea demanding process and the re-sponse rate to be low. Therefore, pur-poseful sampling was done using onlytwo criteria of differentiation in the re-

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cruitment of our participants: “type ofhearing aid” (traditional vs. CI) and“audiological status of each parent”(severe/profound hearing loss, or hear-ing). The relevance of these criteriawas based on our study aim and contri-butions from experts. Characteristicsof the participating children and theirfamilies are shown in Table 1.

Data CollectionThematic content analysis from a phe-nomenological approach (Schwandt,1998) was based on the collection ofdata through interviewing. In-depthsemistructured retrospective inter-views were conducted with the par-ticipating families (Miller & Glassner,2004) by means of a checklist of rele-vant topics based on the literature andthe most recent study among hearingparents (Hardonk, Bosteels et al.,2010). At the onset of each interview,the parents were asked to tell abouttheir experiences with regard toscreening and diagnosis. Next, the in-terviewers asked the parents to go intodetail about experiences and motiva-tions in the decision-making processwith regard to traditional hearing aids

and CI. Over the course of the inter-view, the interviewer asked additionalquestions using the checklist (Silver-man, 1993).The risk of gaps or inconsistencies

in parents’ memories about eventsthat had taken place 5–9 years beforethe time of the interview remained animportant concern in the develop-ment of the study design. Moreover,parents were not expected simply torecall general ideas or feelings aboutthe decision-making process; instead,we sought to collect rich informationrelated to specific experiences. There-fore, in the phase of qualitative datacollection we implemented the lifegrid method (Hardonk, Desnerck,Loots, Van Howe et al., 2010), whichinvolves the use of a chronologicalscheme in which the onset and end ofcare-related events are represented.For this data collection, four gridswere used for different potentially rel-evant aspects of life: “care for thechild,” “child’s education,” “parents’occupational activities,” and “familyand the home.” Every column of thegrid represented 1 year between thechild’s birth and the time of the in-

terview, and the rows of the gridwere labeled to represent differentcategories of care-related events, forexample, “screening” or “care at ENTdepartment.” Events reported by re-spondents were then registered in acell according to the aspect of life, thetype of event, and the date when theevent occurred. Additional informa-tion was registered in the grids, for ex-ample, emotional responses, motives,aspects of the evolution of the child’shearing loss, names of care profes-sionals, and advice received. The lifegrid method not only supports the in-terviewers and the participants, but isalso useful during analysis.Two hearing interviewers were

present at each interview, one leadingthe conversation and the other fillingout the life grid and supporting thefirst interviewer. In the interviews withthree families who used sign language,a certified Flemish Sign Language in-terpreter was present to translate spo-ken language into sign language andvice versa. The same interpreter waspresent at all interviews; she was se-lected on the basis of her successfulparticipation in one of our previous re-

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Type of Type of Type of

Age at Type of hearing hearing hearing

time of hearing Audiological assistive Audiological assistive Audiological assistive

interview assistive status technology status technology status of technology

Child a (years) Gender technology used of father used by father of mother used by mother siblings used by siblings

Cedric 9 Male THA (bilateral) SPHL None SPHL THA (unilateral) 1 hearing sister Not applicable

Evelien 8 Female CI and THA Hearing Not applicable SPHL CI and THA 1 hearing sister Not applicable

Kirsten 6 Female THA (bilateral) SPHL THA (bilateral) SPHL THA (bilateral) 1 sister with THA (bilateral)

SPHL (Nathalie)

Nathalie 3 Female THA (bilateral) SPHL THA (bilateral) SPHL THA (bilateral) 1 sister with THA (bilateral)

SPHL (Kirsten)

Tania 8 Female THA (unilateral) SPHL None SPHL None 1 sister THA (bilateral)

with SPHL

Tim 6 Male CI and THA SPHL None SPHL THA (bilateral) 1 sister THA (bilateral)

with SPHL

Notes. THA, traditional hearing aid. SPHL, severe (71–90 dB) / profound (> 90 dB) hearing loss. CI, cochlear implantation.a Children’s real names not used.

Table 1

Characteristics of Study Sample

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search projects. The interviews wererecorded by means of a digital audiorecorder. A digital video recorder wasused for the interviews in which signlanguage was employed. The life gridwas in full view during the interview.The research protocol as described

above was approved by the ethicalcommittee of University Hospital, Uni-versity of Brussels (reference 2010/002).

AnalysisAll interviews were transcribed verba-tim by the first interviewer/researcherfor detailed investigation of theparental accounts (Silverman, 1993).The other interviewer/researcherchecked all transcripts to ensure accu-rate transcription. After the first andsecond interviews, an observer trian-gulation procedure was implemented,based on thematic content analysisthrough open coding (Lewins, 2001).This involved the use of a set of codesfor labeling of text fragments thatcontain different elements that werereported by respondents as meaning-ful factors in the decision-makingprocess. The initial set of codes wasbased on our checklist, and new rele-vant codes were added in the courseof the open coding process whenevernew topics emerged ( J. Fielding,2001). Text fragments containing in-formation on more than one topicreceived multiple codes. Both re-searchers participated in the observertriangulation procedure, and consen-sus with respect to the coding waspursued through discussion of eachresearcher’s codes supported by thelife grid. Interpretations were finallychecked through discussion withmembers of the scientific committeeof the research project, with a view toachieving consensus.The coding scheme that resulted

from this procedure was used to mod-ify or expand the checklist for inter-

views with the next family—that is, forthe second and third interview.Through this approach, and notwith-standing the small number of partici-pants in the present study, a highdegree of saturation with respect tothe content was achieved, whichmeans that all categories pertaining tothe matter—which was delimited bythe study aim and reflected in thechecklist—were accounted for, andlittle new information was acquiredfrom the last interview (Arber, 2001;Green & Thorogood, 2004).After data collection, the con-

structed coding scheme was used tolabel all interview transcripts. Thisscheme was conceived as a logicaltree of codes, representing differenttopics found in the interviews. Differ-ent hierarchical levels representedmain topics and subset topics, with allfirst-level codes containing at leastone subset of codes, covering differ-ent aspects of the higher- level codes.Throughout the process the codingscheme was further adapted, basedon substantial input by researchersand members of the interdisciplinarysteering committee of the project.Based on their labels, relevant text

fragments necessary for thematic con-tent analysis were collected throughcoded text queries. Moreover, contex-tual information for the selected textfragments was chosen through inclu-sion of the surrounding text. Again,the life grid played a supporting role.Finally, all the acquired informationwas classified, further labeled, and in-terpreted into factors with influenceon the decision-making process. Alllabeling and querying was done usingthe NVivo 7 software package for qual-itative data management.We emphasize that parental per-

ception provided the basis for our de-scriptive analysis. Information on theinclusion criteria and the intentionalsampling criteria was not part of the

analysis or the interpretation of ourfindings, unless the parents them-selves reported on such causal rela-tionships.

ResultsTo demonstrate how parents madetheir decisions, we organized the find-ings from our qualitative analysis ac-cording to a classification of the mostimportant factors in the decision-mak-ing process. Each factor will be dis-cussed under a separate heading,including relevant subthemes thatemerged from our data. Findings arepresented using relevant text quotesfrom the transcripts. Translation oftext fragments from Dutch into Eng-lish was done by a native Englishspeaker based in the Netherlands whois a certified editor and translator. Alltranslations have been checked by theresearchers.

Professional Advice andReferral for CI and Hearing AidsReferral and professional advice for CIand hearing aids was an aspect of thedecision-making process that wasmentioned by all parents. The conceptof referral is defined as the act by amedical professional or another healthcare worker of referring the family ofthe deaf child to another serviceprovider (Hardonk, Bosteels et al.,2010). Professional advice is used as abroader concept, referring to all care-related advice provided by medicalprofessionals or other health careworkers, as part of the care profession-als’ initiative.All parents in the present study re-

ceived professional advice and refer-ral for the fitting of hearing aids. Thisadvice was given spontaneously byprofessionals at ENT departments andrehabilitation centers, such as audiol-ogists, ENT specialists, and speechtherapists. All parents talked positively

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about this professional advice/referralmessage. When care professionals ad-vised the fitting of hearing aids, thisguidance was followed by the parentswithout opposition.With regard to CI, two different sce-

narios were found in the parental ac-counts. First, after further diagnosisthrough brainstem evoked-responseaudiometry and fitting of traditionalhearing aids, the parents of Evelien,Tania, and Tim (the names of these chil-dren and all other children in the pres-ent study have been changed to protecttheir privacy) were advised by medicalprofessionals at ENT departments andrehabilitation centers to consult a CIcenter. The parents reported that theENT specialists based their advice toconsider a cochlear implant mainly onthe degree of hearing loss. In the casesof Tania and Tim, the parents were nothappy with this advice. Their responseswere characterized by surprise and in-dignation, because they assumed thatthe doctor would have some under-standing of how deaf parents respondto the deafness of their child, as Tania’smother indicated:

At that moment, we were a bitshocked [to hear CI be recom-mended]. We are deaf ourselves; whydoes the doctor then suggest that weshould opt for a CI? I thought thatwas a really strange question, and weimmediately answered, “No, thankyou.” We are deaf, and our child ap-peared to be deaf. Why would wewant to give her a CI?

The fact that CI was presented bysome professionals as a logical stepin the care trajectory, correspondingto a need on the child’s part, was in-terpreted by the parents as the con-struing of their child’s hearing statusas a disability and the abrogation ofthe family’s language and identity.Tim’s father stated,

At the rehabilitation center theywanted to refer us to other parentsfor firsthand information on CI. Thatreally gave me the feeling that theywere pushing us toward CI. I saw itas an attack on us. I really felt thepressure. We really blocked that op-tion. . . . They wonder why we are notsad, but we say “No, our child is deafand we accept that.”

Evelien’s parents did not perceivethe advice about CI in the same way:They felt neither shocked nor of-fended, although they did respondwith restraint, as they felt theyneeded more information. Evelien’sfather said,

My experience with Doctor ________is that he did not give much informa-tion. He simply checked if [Evelien]was eligible, and he presented a num-ber of CI brands. He advised somebrands based on medical arguments,but otherwise we did not receivemuch information.

This led Evelien’s parents to consult adoctor at another CI center, but theirgeneral perception persisted that theinformation they were receiving wasone-sided and incomplete. BecauseEvelien’s parents wanted to considerthe option of CI seriously, they per-ceived the lack of information andthe exclusive focus on the medicalapproach—on treatment of the audi-ological condition of the child—as athreat to their ability to make an in-formed decision:

[The ENT specialists] do not talkabout the Deaf community; all theymention is rehabilitation, audiology,etc. They should inform us aboutboth CI and the existence of the Deafcommunity, and the pros and cons ofboth. If they do that, then parentscan make their decision.

With regard to the account ofEvelien’s parents, it is worth notingthat Evelien’s father was hearing andher mother was deaf. It should also benoted that when the issue of CI wasfirst mentioned, Evelien’s mother de-cided to explore the option for herselffirst by receiving a unilateral cochlearimplant. Her own experiences withregard to surgery, comfort, and effec-tiveness were reported as an impor-tant aspect in the decision-makingprocess regarding her daughter, be-cause these experiences produced in-sight into the issue of CI that couldnot be obtained any other way.Evelien’s mother said, “My positiveexperience with CI, especially withregard to its effectiveness, had agreat influence on our decision. I hadto be sure—my child is very impor-tant to me.”Criticism of the advice from ENT

specialists was also found in the ac-count of Tim’s parents. When Tim was4 years old, they decided that theywanted to consider giving him acochlear implant. But in their effort tocollect information on the technologyand its appropriateness for their child,they found differences in the informa-tion provided by different CI centers.Tim’s father said,

Doctor ________ is really bad, reallybad. He never told us that we hadtime to decide; he had one rule: thesooner, the better. I don’t think heshould do that; in his center they givechildren CIs as if it were a factory.

Tim’s father’s forceful expression indi-cates strong emotions with regard tothe intervention of some medical pro-fessionals. Tim’s parents felt uncom-fortable with and upset by theone-sided advice they had been given,and they decided to attend a differentcenter that gave recognition to theirlanguage and identity. Tim’s parents

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were also relieved when the timepressure was removed from their de-cision-making process. They felt re-laxed and able to make the decisiononce the need for early implantationwas placed in a broader perspective.Tim’s father said,

I asked [the ENT specialist] if weshould hurry with our decision mak-ing, but he told us that we could waituntil Tim was 4 or 5 years old. He saidthat we should not wait any longerthan until the age of 7, because thenthe device would not be effective.That really helped to reassure us. Hewas very honest with us.

In a second scenario, present in theaccounts of the parents of Cedric,Kirsten, and Nathalie, medical profes-sionals involved in diagnosis and careat ENT departments and rehabilita-tion centers did not mention the op-tion of CI at all, or mentioned it onlybriefly. This was appreciated by theparents, as an indication that the med-ical professionals were sensitive totheir views on deafness.

Ethical IssuesThree issues concerning ethical as-pects of CI emerged from parental ac-counts: (a) the appropriateness ofsurgical interventions in young chil-dren with non–life-threatening condi-tions, (b) surrogate decision making,and (c) the roles and definitions ofDeaf identity and Deaf culture.

Appropriateness of SurgicalInterventions for Non–Life-Threatening ConditionsThe parents of Kirsten and Nathalieexpressed their concerns about theappropriateness of a surgical inter-vention for a biomedical conditionthat is not life-threatening. Implantinga bionic hearing device inside thechild’s brain was perceived as a diffi-

cult moral issue, different from the useof traditional (external) hearing aids.The mother of Kirsten and Nathaliesaid, “I am not against CI, but I do notagree with the surgical part, cutting inthe child’s head. We are natural hu-man beings.”

Surrogate Decision MakingTwo types of parental views with re-gard to surrogate decision makingemerged from the data. First, someparents found it difficult to assess theimpact on the child’s developmentand whether the child would behappy with the decision in the longterm. Because they had difficulties de-ciding for their child, the parents ofCedric, Kirsten, Nathalie, and Taniawanted to put the matter into theirchild’s hands. By leaving the decisionto the child, they aimed to recognizethe child’s right to decide about his orher own body and any surgery per-formed in connection with the hear-ing loss. These parents reported thatthey were well aware of possible con-sequences of postponing the decisionuntil the child was able to make it.They felt that there was responsibilityinvolved in not making the decision,and they were prepared to have anopen attitude in this matter. Kirsten’sfather said,

We have already discussed this; ifKirsten would like to have a CI in thefuture, then we will never deny herright to have one. It is her decision.And maybe she will ask us then whyshe does not already have a CI. I willhave to explain that to her.

Tim’s parents shared this position, butthey attached a different meaning tothe idea of letting the child decide. AsTim’s father said,

Many parents think that a child is notable to make this decision, but they

are wrong. A child is able to decide.With sign language, you can commu-nicate perfectly with your child andyou can discover the psychology ofyour child [discover what your childis thinking] through his attitude, thethings he says, etc.

When he was 4 years old, Tim ex-pressed that he missed hearing envi-ronmental sounds, a developmentthat was due to an increase in hearingloss, so his parents collected informa-tion and professional advice on CI andexplained the technology to theirchild. Letting the child decide for him-self was not easy for the parents, whoat first found it difficult to acceptTim’s choice. Tim father said,

At that moment, I felt hurt. His ques-tion [about a cochlear implant as ameans of hearing sounds] had struckme. At that point, I felt obliged togive him the CI. I had to put my opin-ion about CI aside and go for the newidea. . . . It is up to my child to de-cide, not me.

Tim’s parents emphasized that leavingthe decision to their child was possi-ble because one of the CI specialistshad told them that they could taketheir time making the decision, aslong as their child was not older than7 years. The provision of professionalinformation and the parental decisionwere clearly related.A second type of parental view on

surrogate decision making regardingCI was found in the account ofEvelien’s parents. They did not feelthat surrogate decision making wasparticularly difficult; instead, they per-ceived it as a necessity, forced by cir-cumstances. Evelien’s father said,

The fact that we had to make such adecision, well, whether she is a hear-ing or a deaf child, you are always

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required to make decisions. At acertain moment we reached a pointwhere we had to make a decisionfor her.

Evelien’s parents felt that it waspart of responsible parenthood tomake a decision required by the de-gree of hearing loss and its impact onthe future development of their child.As a consequence, they initiated thedecision-making process, which re-sulted in the implantation. Thereby,they rejected the option of postpone-ment, because they felt that thecochlear implant was necessary forsuccessful participation in hearing ed-ucation. In their view, postponing thedecision was related to postponingtheir child’s participation in hearingeducation, which they felt would notbe the best choice to make, as theyperceived the quality of special educa-tion for the deaf to be very poor.

The Roles and Definitions ofDeaf Language, Deaf Identity,and Deaf CultureThe parents of Kirsten, Nathalie, andTania considered CI a threat to theDeaf community, because it is aimed atspoken-language development. Thefather of Kirsten and Nathalie said,

Deaf parents with a hearing child nat-urally become familiar with the hear-ing world. And hearing parents with adeaf child encourage the idea of trans-forming their deaf child into a hearingchild [i.e., by using CI]. As a result,they all enter the hearing world.

The parents also expressed their con-cerns over the development of signlanguage and Deaf identity among chil-dren with a cochlear implant. Tania’sfather said,

Where are my Deaf friends? Theyhave disappeared into the hearing

world, where they have to makehuge efforts to communicate withhearing people, which leaves themexhausted. Compared to when I wasa child . . . we did everything withother Deaf people and it was fun!

The view of the parents of Evelienand Tim on the role of Deaf language,identity, and culture in the issue of CIwas somewhat different. These par-ents shared the other parents’ con-cerns with regard to the shrinkingDeaf community, the identity of thechild, and the decreasing importanceof sign language for deaf individuals,but these concerns did not lead to acomplete rejection of CI. This milderposition was expressed by Evelien’sfather:

To us it is important that Evelien isable to use sign language and thatshe maintains contact with otherDeaf people. I know that in someother families the children with CInever meet any Deaf people, so theylose contact with the community. Iunderstand Deaf people’s fear thatsign language will eventually disap-pear, because people with CI willcommunicate orally and not use signlanguage. I regret that; they shouldfind a way to cooperate.

Again, it is worth noting thatEvelien’s father was hearing, while hermother was deaf. Nevertheless, thesame kind of view is also present inthe account of Tim’s parents, whowere both deaf. They felt that the useof CI does not necessarily contradictthe use of sign language, develop-ment of a Deaf identity, and participa-tion in the Deaf community. Tim’sfather said,

It was a difficult decision but I amglad [Tim] told me [that he wanteda cochlear implant]. Luckily, he will

always keep his Deaf identity; youcan see that. He is really proud ofsign language, and he has a Deafcharacter.

Concerns About Medical andTechnological AspectsTraditional hearing aids and CI devicesare aimed at a reduction of hearingloss. One of the main differences be-tween them is the invasive character ofCI devices, which require surgery andpostsurgical care. In this section of thepresent article, motivational factors inthe decision-making process are de-scribed with regard to risks, conse-quences, and benefits, as well as theperception of the hearing assistivetechnology.

Risks Related to CI SurgeryWe found that concerns about risks re-lated to the CI surgical procedurewere an important factor in decisionmaking. One of the elements that ledto the rejection of CI by the parents ofKirsten, Nathalie, and Tania was theseparents’ worry that surgery would notbe successful, with negative conse-quences resulting for their child. Tim’sparents felt similarly about the risks re-lated to the surgery, but these feelingswere not decisive and Tim eventuallygot a cochlear implant. Tim’s fathersaid, “There is a big risk related to CI.The surgery can cause brain damage.After all, they do have to open up theskull; they do need to get to thosenerves. So many things can go wrong.”

Long-Term Consequences of CI SurgeryEven in circumstances in which CIsurgery was expected to be success-ful, parental perception of the long-term consequences of the surgerywere, in the cases of the parents ofCedric, Evelien, and Tania, a second as-pect that influenced decision making.Cedric’s mother said,

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What if my son has an accident?Maybe he will never hear again then.And what if he gets pain in the fu-ture? I also heard many people with aCI say that it is dangerous to fly witha CI. I know a girl who really has a lotof pain because of the implant. No,we really do not trust the CI.

Potential Benefits of Cochlear Implants Relative to Hearing AidsThe potential benefits of CI over theuse of traditional hearing aids was athird aspect that, for the parents ofKirsten, Nathalie, and Tania, played ameaningful role in the decision-mak-ing process. These parents were notconvinced that the positive effect ofCI on the child’s ability to hear wouldbe significant, especially compared tothe perceived negative aspects of thetechnology. This view is well illus-trated by remarks by Tania’s mother:

They immediately offered us CI, butwe refused that, we said “no.” Wechose to use hearing aids, becausethe hearing aids bring her up to30–40 dB[HL], and compared to CI,the difference is actually not so big.Even with CI, there is always a hear-ing loss. So we did not choose CI.

This aspect was also important in thedecision-making process of Evelien’sparents, but in the opposite way. Theseparents valued the potential of CI to offer better prospects for hearing andspoken-language development thanthe use of traditional hearing aids.

General ImpressionsGeneral impression of the hearing as-sistive technology, the fourth factorthat influenced decision making,refers to the parents’ subjective viewof the technology in general terms.Except for Evelien’s parents, who con-sidered CI technology comparable to

traditional hearing aids, but with agreater potential for hearing and spo-ken-language development, all theparents explicitly stated that they feltthat a difference existed between thetwo types of hearing assistive technol-ogy. From the viewpoint of the par-ents of Tania, Kirsten, and Nathalie, CItechnology completely transformedhuman beings. This perspective wasillustrated by Tania’s father, who said,“I think that when using a CI, you be-come a kind of robot. You become amachine. There is something me-chanical in your head. There is a chipin your head.” Tim’s parents sharedthis view, even though they decidedto give their child a cochlear implant,a choice that is explained by the factthat they gave him the freedom to de-cide on this issue. Tim’s father said,

I am really opposed to CI, I want to beclear about that. I am deaf. If you havea CI, I imagine that you must feel half-man, half-machine. When we decidedto get a CI, we were really thinkingabout Tim’s well-being.

Difficulty Imagining What “Hearing” Is LikeA fifth element of parents’ impres-sions of the technology applies toboth hearing aids and CI: Some ofthe deaf parents had difficulty imag-ining what “hearing” is like. For in-stance, speaking of his son, Tim’sfather’s said,

When his hearing aids were fitted,he was constantly looking aroundbecause all kinds of new soundswere reaching him, and he was veryquiet. He appeared to be a little nau-seated. I felt that was not normal. Iwanted to destroy the hearing aids,what were they doing to my boy—he had changed completely! Butthat gradually changed when he gotused to them.

Communication Mode andSocial ParticipationAs far as the role of preferences re-lated to communication mode in thedecision-making process is concerned,three different parental views emergedfrom the interviews.

A Preference for Spoken-Language DevelopmentEvelien’s father said, “Without the CIthere would always be problems in ourcommunication. I could speak, butshe would not hear everything. And ifshe had any problems, she would notbe able to tell me. [Spoken] languageis important.” This statement, how-ever, does not imply that Evelien’s par-ents were solely interested in pursuingspoken-language development. AsEvelien’s father also said, “We do usesigns and we are also members of or-ganizations for the Deaf. We want to lether feel that there are other Deaf chil-dren out there who also have a CI. Weregularly meet Deaf people.”Evelien’s parents’ preference for

spoken-language development alongwith the use of sign language explainstheir instrumental perception of CI.As the girl’s father said, “To us CI isnothing more than a technology thatenables participation in the hearingworld.” Again, it should be noted thatEvelien’s mother was deaf and had re-cently received a unilateral cochlearimplant, while her father was hearing.

A Perception of Equal StatusBetween Sign and SpeechOther parents placed less emphasison spoken-language development.For one thing, they did not perceivecochlear implants as having an ad-vantage over traditional hearing aidsfor oral communication. Tania’s fathersaid,

You should not expect too muchfrom a CI. We live as a Deaf family

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and we use sign language, and it willremain that way, regardless ofwhether [Tania] has a CI or not. Shemight communicate differently out-side the family, but not at home.

For these families, sign language wasthe natural language within the home,with spoken language as an equivalentlanguage. This explains why these par-ents considered traditional hearingaids sufficient for their child’s oralcommunication development. Tania’smother said, “Tania is able to hear thetelevision, the radio, household appli-ances in the kitchen, an aircraft flyingover. She can hear all of that with herhearing aids. What more should wedo for her?”

Concerns About the Impact of CI on Communication at HomeA third parental view involvedstronger rejection of CI based onconcerns about the impact of spoken-language development on communi-cation within the family. Cedric’sfather—who did not use hearing aidsand communicated exclusively bymeans of sign language—rejected CI,because he expected that a strong fo-cus on oral communication would re-sult from it:

If Cedric had a CI, I would be afraidthat he would grow up to have morecontact with his [hearing] grandpar-ents than with me. It would really bea problem for me if Cedric talked allthe time. My parents are always talk-ing, and I am always bored because Ihave difficulties in communicatingwith them.

With regard to the role of theirviews on social participation in thedecision-making process about CI,the parents can be divided into twogroups. First, Evelien’s parents wereconvinced that it was very important

for their child to be able to participatein social activities in both the hearingand Deaf worlds. They also thoughtthat the use of a cochlear implant,combined with attention given to signlanguage and participation in organi-zations for the Deaf, would ensurethat Evelien would have enough pos-sibilities in the future for social par-ticipation in both worlds. Evelien’sfather said,

If the Deaf world opens up [to chil-dren with a cochlear implant], shewill be able to participate. . . . TheDeaf world should realize what theyare doing. They could benefit fromthe participation of children with CI.. . . There are people with CI whomake the effort to learn and use signlanguage, so sign language is notdoomed to disappear. These thingsshould not exclude each other.

Although the other parents valuedspoken-language development, theyfirst of all wanted their child to partic-ipate in the Deaf community. More-over, in their view the matter ofparticipation in the hearing com -munity did not revolve exclusivelyaround CI. Kirsten’s father said, “Ifthere were enough sign language in-terpreters, then I know for sure thatmy child could integrate into the hear-ing world using hearing aids. Ofcourse, she would need a lot of sup-port, but it is possible.”Kirsten’s mother explained that, in

any case, she and Kirsten’s father at-tached less importance to participa-tion in the hearing world, becausethey did not perceive deafness as aproblem:

I do understand that hearing parentswant a CI, because they believe it willhelp integration into the hearingworld. But it is different for Deaf par-ents. Hearing parents perceive their

child as “different,” while for Deafparents that’s not the case; she is notdifferent to us. Hearing parents hopethat their child will get a good voice;we don’t.

Expectations RegardingEducation and EmploymentThe parents expressed two differentgeneral viewpoints with regard to theinfluence on their CI decision makingof their expectations about educa-tion and employment. Only Evelien’sparents considered CI important forcreating future opportunities in edu-cation and employment. This positionis closely connected to the trust theyhad that CI offered the best prospectsfor spoken-language development.Evelien’s father said,

[Spoken] language is important forschool and future employment. Deafpeople with hearing aids have a hardtime on the labor market. Most ofthem end up in social employment.[Social employment is state-organ-ized and state-funded work for peo-ple who have difficulty participatingin the regular job market. A protectedwork environment is provided, withprofessional support available.] Wewant her to have more opportunitiesin education and employment.

For these parents, the lack of opportu-nities for further education resulted intheir preference for hearing education,which was in their view best supportedby the use of a cochlear implant.All other parents had a similar view

on special education and integration inmainstream education. However, thisdid not contribute to a decision in favorof CI, even for Tim’s parents, notwith-standing the fact that their son got acochlear implant. Tim’s father said,

We did not choose CI because wehoped it would help Tim to attend a

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hearing school. No, not at all, we hadno expectations whatsoever. All thatmatters is what he wants now, hiswell-being, his happiness. . . . I do notreally expect that he will get moreopportunities because of the CI.

All of the parents were well aware ofthe implications of their child’s partic-ipation in mainstream education, andthey realized that it would put high de-mands on their child. Confronted withthe suggestion made by the parents ofKirsten and Nathalie that the specialeducation system should be changedso as to aim for higher quality as wellas greater opportunities for furthereducation, Evelien’s father respondedthat this would only mean a shift intheir concerns, from education toemployment:

Maybe the educational concernswould become less. But then thequestion remains: What will happenafter their education? If things wereeasier, we would have left the deci-sion regarding CI up to her, but wehad to make a decision, for her future.

In contrast, Tania’s parents wereconfident that Deaf people without CIwho receive a good education wouldhave opportunities in the labor mar-ket. Tania’s father said,

The CI is all too often presented as ifit creates a hearing future with hear-ing employment. I think talented andcompetent Deaf people can alsohave a good future and find a goodjob. If they get the right support, itwill work out.

Information and KnowledgeAbout Hearing Loss andAssistive TechnologyNone of the parents reported anyproblems related to information andknowledge about deafness in their de-

cision making or in their encounterswith care professionals, a finding thatis connected to the fact that all of theparents were already familiar withdeafness and the Deaf community.Based on their own experiences aschildren and their regular participa-tion in organizations for the Deaf, theparents had been well informed aboutdeafness and recent developmentslong before their child was born. Con-sequently, the diagnosis of hearingloss was not perceived as a tragedy.Tim’s father said, “We did not weepwhen we heard that [our son] wasdeaf. [The care professionals] wonderwhy we are not sad, but we accept thatour child is deaf. For us it is normal.”Because of the absence of a sense

of tragedy and because of the parents’familiarity with how Deaf people live,social support from peers was not acrucial issue in decision making.When parents did receive informationfrom peers, it was a result of their owninformation-seeking initiatives.All the parents, except Tania’s, con-

tacted other parents to get more in-formation about CI—more specificdetails about medical risks, effective-ness, and the rehabilitation process.This appeared to be useful to comple-ment information provided by careprofessionals. Tim’s father said,

They gave us a lot of information,mainly about education, how thingswork in deaf and hearing schools,about their students’ language devel-opment. Yes, this information wasclearly different from what we had re-ceived earlier [from care profession-als], mainly with regard to education.

The parents of Evelien and Timtook the initiative to consult othersources of information as well: the In-ternet, organizations for the Deaf, andsurgeons at a CI center. Although thecollected information—regardless of

the source—was helpful to the par-ents, it was not decisive with regard tothe choice between CI and traditionalhearing aids. First of all, some parentsstated that a number of questions re-mained unanswered, even after theirown information-seeking initiatives.Moreover, although the parents addedthe information they collected totheir accumulated arguments for andagainst, they denied that the source ofthe information had a direct influenceon their decision. All parents attacheda high value to their independence indecision making. As Kirsten’s fathersaid, “It was a mere collection of infor-mation. We got information, experi-ences, and advice from these people,but we never followed their opinionswithout discussing them betweenourselves.”Although they valued information

from other parents whose child had acochlear implant, Tim’s parents ex-plicitly rejected this type of extra sup-port when it was offered by careprofessionals. Their attitude was char-acterized by suspicion and a lack oftrust toward care professionals, whichresulted in their interpretation of theoffer as an attempt to influence theirdecision making.

Discussion and ConclusionThe present study responds to aneed for detailed scientific knowledgeon deaf parents’ decision-making proc -esses regarding CI for their deaf child(Hardonk, Bosteels et al., 2010). Byproviding more insight into the spe-cific perspectives of these parents,our qualitative study increases under-standing of the factors involved in de-ciding whether to use CI in the effortto advance the (spoken) language de-velopment of deaf children born todeaf parents.We emphasize that the aim of the

present study did not include thegeneralization of findings or statistical

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testing of correlations. Instead, a de-scriptive qualitative design was usedto acquire detailed knowledge froman explicitly parental perspective.Sample size consequently should beassessed in terms of diversity and sat-uration, not representativeness. Thisapproach has provided rich and de-tailed information on the decision-making process that can contribute tothe evaluation of professional practiceand to further scientific research. Thefact that children with cochlear im-plants as well as children using tradi-tional hearing aids were included inthe study also supported the richnessof the data.Our analysis has provided indica-

tions of the importance of certain fac-tors in the decision-making processthat have also been found in our studyamong hearing parents (Hardonk,Bosteels et al., 2010) and in other previous studies, for example, ones byKluwin and Stewart (2000), Li et al.(2004), and Okubo et al. (2008). Morespecifically, the deaf parents’ accountsplaced much importance on medicalaspects of CI, though these were notalways the decisive factor. The deafparents’ beliefs and concerns with re-gard to medical risks related to a sur-gical procedure inside their child’shead are largely similar to those foundamong hearing parents in previousstudies (Hardonk, Bosteels et al.,2010; Okubo et al., 2008). Concernsexpressed among hearing parentsabout the removal of residual hearingcapacities in the CI procedure ap-peared in the present study in the ac-count of the family with a hearingfather. Our analysis also indicates asecondary role for social relations andparents’ own information-seeking ini-tiatives in the decision-makingprocess, which was also found amonghearing parents (Hardonk, Bosteels et al., 2010; Kluwin & Stewart, 2000).However, we also found indica-

tions that deaf parents hold a specificposition regarding CI and hearingaids. First, in studies among hearingparents (Hardonk, Bosteels, et al.,2010; Kluwin & Stewart, 2000; Li et al.,2004), it has been shown that profes-sional advice was a decisive factor,whereas in the present sample of deafparents only limited importance wasattached to professional advice re-garding CI. In some cases, the parentseven felt offended by professional ad-vice, rejecting because they consid-ered it a denial of their Deaf identity.This is an element that has not beenreported on in studies among hearingparents; however, it is in line with theposition of the deaf parents in thecase analyzed by Stein et al. (2001).Our results suggest that professionaladvice in favor of CI is a sensitive issueto some deaf parents, because it couldgo against their attachment to Deafculture and Deaf identity. It is worthnoting that for the family in which thefather was hearing, the more impor-tant role assigned to professional ad-vice in the parental decision-makingprocess was comparable to that as-signed by hearing parents (Kluwin &Stewart, 2000; Okubo et al., 2008).Second, the deaf parents in the

present study gave indications thatthey assigned limited priority to spo-ken-language development and oralcommunication skills. Most parentsreported being satisfied with the levelof spoken language that is made pos-sible by using hearing aids. In previ-ous studies, it has been found thathearing parents pursued the highestpossible level of spoken-languageskills and that decisions with regard toCI were made accordingly (Hardonk,Bosteels, et al., 2010; Kluwin & Stew-art, 2000; Okubo et al., 2008). This isan important difference in the percep-tion of the reality of deafness: Amongdeaf parents, we found expressions ofcultural Deafness in which deafness

was perceived as “normal.” In thisview, sign language is considered thenative language of deaf families, not asecond choice in the event that thedevelopment of spoken language isunsuccessful. Notwithstanding thefact that they wanted to give theirchild every opportunity and freedomto develop spoken language as a sec-ond language, these parents hopedthat in the future their child wouldfirst of all participate in the Deaf com-munity. The idea that CI is the maintool of care professionals who wish tomake all deaf children hearing and toerase Deaf language, Deaf culture,and Deaf identity was recurrent inparents’ accounts, especially amongthose who expressed their attach-ment to Deaf culture and Deaf iden-tity. Again, the couple in which thehusband was hearing reported a dif-ferent view: To these parents, spoken-language development seemed moreimportant, and they did not share theview of CI as the main threat to theDeaf community.It appears that issues of communi-

cation mode are closely related toparents’ expectations for social partic-ipation and the value attached toDeaf identity. These aspects played adecisive role in the decision-makingprocesses of the deaf parents in thepresent sample, except when the par-ents attached more importance to thechild’s right to decide.Third, expectations for future tech-

nological innovation appeared to playa different role in the deaf parents’ de-cision-making processes. Among manydeaf parents in the present sample,issues of development of better tech-nologies for reducing hearing losswere not of importance—a positionthat appeared to be related to theirstance with regard to the importanceof spoken-language development.Our findings have some important

implications for professional practice.

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With regard to UNHS and early careintervention, it is important to notethat among deaf parents the percep-tion exists that professional advice isnot very important in decision makingfor hearing aids and CI. Our findingsfurthermore suggest that deaf parentsdo not necessarily follow care profes-sionals’ virtual timetable for a timelyCI. The idea of “the sooner, the bet-ter” regarding CI that is predominantamong care professionals and hearingparents (see also McCracken et al.,2008) was criticized by deaf parents inour sample. This general wariness ofprofessional thinking in regard to CIappeared to be related to parents’perceptions of the one-sidedness ofprofessional advice, to the impor-tance of ethical concerns relative tosurrogate decision making, and to thevalue attached to Deaf culture andDeaf identity. This finding does notlead to the conclusion that early detec-tion is unimportant, but it illustratesthe need to evaluate professional prac-tice with regard to early interventionsin the subpopulation of deaf parents.All aspects of early diagnosis, care,and audiological management canbenefit from the development of anapproach that builds not only on themedical perspective on deafness, butalso on nonmedical aspects of deaf-ness. Such a new approach should notbe narrowly perceived as beneficialonly to deaf families, but also to hear-ing parents and their children. Thisconclusion is reflected in a study byLoots, Devisé, and Jacquet (2005) onthe benefits to parent-child interac-tion that accrue from the use of signlanguage with deaf toddlers. Otherstudies support this stance, for exam-ple, Burger et al. (2005), which showsparental distress related to early inter-ventions, and Young et al. (2006),which explicates the concept of in-formed choice.Our findings also have implications

for scientific research. First, theycomplement the empirical findingsconcerning hearing parents’ experi-ences and decision making reportedby Christiansen and Leigh (2004),Hardonk, Bosteels, et al. (2010),Kluwin and Stewart (2000), Li et al.(2004), McCracken et al. (2008), andOkubo et al. (2008). Second, the spe-cific construction of deafness that un-derlies parents’ decision making—ofwhich cultural Deafness is an exam-ple—appears as an important ele-ment, yielding a challenge for futureempirical studies. The results basedon the account of the family in whichthe father was hearing illustrate thatparents’ construction of deafnessshould not be narrowly conceptual-ized as either hearing or culturallyDeaf, but as part of parents’ own per-spective on the reality of the child’shearing status. This conclusion buildson the notions concerning meaning at-tached to deafness by Deaf people putforward by Padden and Humphries(2010). To acquire better insight into is-sues of early care intervention for con-genitally deaf children, scientificresearchers should make efforts todevelop the notion of “constructionof deafness”—which includes socialand cultural-linguistic aspects—foruse in empirical research.As a general conclusion, we main-

tain that the decision-making proc -esses of the deaf parents in thepresent study reflected concerns thatwere not expressed by hearing par-ents in previous studies. These con-cerns are part of a parental position inwhich deafness does not come as asurprise and is not perceived as a per-sonal tragedy for which a quick, med-ically inspired treatment is necessary.Nevertheless, the deaf parents’ per-spective on the early care trajectorydoes not necessarily line up with thetraditional Deaf-hearing dualism, be-cause some factors found in deaf par-

ents’ accounts were similar to thosefound among hearing parents. More-over, the stereotype of deaf parentscompletely rejecting CI (see, e.g.,Obasi, 2008) is transcended by ourfindings, which are illustrated by thedifferent views within our sample ofdeaf parents, for example, with regardto the importance of the child’s rightto decide about CI.

NotesThe authors report no conflicts of in-terest. The authors alone are respon-sible for the content and writing of thepresent article. Recruitment of re-spondents was made possible thanksto the collaboration of Fevlado, VGTDoe Mee, and the child welfare organ-ization for the Flemish community inBelgium, Kind en Gezin (Child andFamily). We would like to express ourgratitude to these organizations andto our participants for their willing-ness to support the present study.Correspondence concerning this

article should be addressed to StefanHardonk, Department of Medical Soci-ology, Vrije Universiteit Brussel, Laar-beeklaan 103, 1090 Brussels, Belgium.E-mail: [email protected]

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