Information Sources Influencing Parental Decisions Regarding Cochlear Implantation of Deaf Children

Rhett Thomson
Utah Valley University

Abstract

Parents of children born deaf face many significant decisions which can be quite stressful. There are many options available to parents and many sources which supply information and guidance. One option parents are presented with is a technological intervention: cochlear implants. These can enable hearing in the deaf infant. Reaching a decision regarding cochlear implantation comes after significant investigation. Some studies have found that various sources of information, such as audiologists and parent support groups, are useful to parents during the education process. The object of the present study is to determine how influential those sources of information are and why each source was perceived as valuable. This study was performed using a survey composed of primarily close-ended questions. Results indicate that not all parents talk to the same sources in order to gain information, although some sources are more likely to play an educative role than others. Results further indicate that some sources of information influence parental decisions more than others. Reasons why each source is considered useful are also identified.

Literature Review

The Universal Newborn Hearing screening identifies nearly 5,000 infants with moderate to profound hearing loss each year (Thompson et al., 2001). Upon discovering hearing loss within a child, parents learn that there are many options available for their child. All the various options necessitate decision-making on the part of the parents.

During the decision-making process, parents must consider the goals and expectations they have for their child. Often, parental expectations focus on the educational and linguistic aspects of hearing loss (Sach et al., 2005). For example, parents can decide to have their children receive an oral-only education or a combination of sign language and oral language, known as a “total communication” approach. (Moeller, 2000). Other goals and expectations focus on their child’s communication and academics (Archbold et al., 2006; Hardonck et al., 2011; Hyde et al., March, 2010; Hyde et al., August, 2010; Steinberg et al., 2000). Because most parents of infants born deaf are not fluent in sign language, communication goals are typically geared toward being able to speak vocally with their children, rather than using sign language (Mitchell & Karchmer, 2004; Sparrow, 2005). That being said, evidence indicates that communication goals are not always the most important deciding factors to parents. Instead, regardless of what treatment is pursued for their children, parents differ regarding what goals, values, and expectations played the most significant role in their final decision (Hardonck et al., 2011; Hyde et al., 2010; Li et al., 2004; Steinberg et al., 2000). Parents have many things to learn about and consider. They become educated on their options from outside sources of information, which may include parents of deaf children, physicians, or members of the deaf community (Archbold et al., 2006; Hardonck et al., 2010; Hardonck et al., 2011; Hyde et al., 2010; Kluwin & Stewart, 2000). Information parents receive from these sources can be in support of, neutral to, or opposed to certain interventional approaches. For example, cochlear implantation is an approach of significant discussion and disagreement. Many who oppose cochlear implantation do so on the grounds that implants undermine the value of the Deaf community and sign language (Paludneviciene & Harris, 2011; Sparrow, 2005; Swanson, 1997; Tucker, 1998). Conversely, many who support cochlear implants hold the perspective that cochlear implants, because they enable hearing and speaking, benefit children most (Blume, 2010; Hardonck, 2010). Although these are two extremes on the topic, it is important to note that opinions on the issue of cochlear implantation can vary greatly from both extremes to anywhere between. Regardless of the position the source holds on the topic of cochlear implants, it is important to note that the information parents receive may be conflicting. Additionally, parents must weigh health risks against the potential benefits (Dettman et al., 2007; Niedermeier et al., 2012). Parents must also learn whether or not their children are candidates for cochlear implantation, which can vary from patient to patient depending upon the degree of hearing loss (Bradham and Jones, 2008; O’Brian et al., 2012; Osberger et al., 2002). The overarching point is that parents are left to sift through lots of information, opinions, and personal values in order to reach a final decision for their children(Blume, 2010). Some parents have found the decision-making process to be very stressful (Christiansen & Leigh, 2002).

When considering cochlear implantation, cost is an additional factor of note because the operation can cost over $50,000 (Cheng et al., 2000). However, Medicaid and most commercial insurance companies cover the cost of the implantation procedure (Boswell, 2009; Sorkin et al., 2007). Therefore, the choice for cochlear implantation is typically not cost-prohibitive for parents. Although the cost of implantation does not eliminate it as an option for most families, parents must still carefully evaluate all other options and risks before deciding what course of action to pursue with their children.

As mentioned previously, parents are educated by outside sources. However, only a small number of studies have focused on what sources supplied the most valuable information from parental perspectives (Hardonck et al. 2010; Hyde et al., 2010; Kluwin & Stewart, 2000). The study of Hyde et al. (2010) requested that parents choose one single information source they considered to be the most important to their final decision. The authors interviewed 13 parents and found that the most important source of information leading parents’ to their final decision were physicians. However, Kluwin & Stewart (2000) found that, of the 35 parents they interviewed, only 13 indicated that medical personnel were the primary sources of information, while 15 indicated that parents of other deaf infants were their primary source of information. In other words, studies disagree regarding what sources are identified by parents as being the most important. This discrepancy is likely a result of the small sample sizes within the studies. Furthermore, the words used in these studies did not directly seek to know how much influence these information sources had on parents’ decisions. For example, asking a parent which information source was most important may yield a different answer than asking which information source was most influential. Furthermore, no question specifically asked parents whether or not information sources were influential. The object of this study is to determine how information sources influence the decision-making process. The present study will also seek to determine which of these sources of information are found to be most influential to parents and why. It is hypothesized that parental decision-making is highly influenced by information sources, parents consult some information sources more frequently than others, some sources are more influential than others, and each source is valuable for reasons unique to the source.

Methods

This study received the approval of the Institutional Review Board at Utah Valley University, holding an approval number of 01181. This research was approached primarily as quantitative, exploratory, survey-based research. It is quantitative because it contains nineteen close-ended questions and one open-ended question, without any personal interviews with respondents. The study is exploratory because of the small, focused sample size and the overarching objective to identify any observations that may warrant a more substantial investigation in a future study.

Participants

Parents were selected through a snowball recruiting technique. Several third party organizations who work closely with families of cochlear implant recipients were contacted to distribute the survey to parents within their respective organizations. The participating organizations include Hands & Voices, hear ME now, and Hear 2 Learn.

Survey Questions

A survey was issued to parents through an online www.Qualtrics.com survey. A complete list of the survey questions can be found in the Appendix of this document. The first series of questions were related to demographics, determining the age, ethnicity, gender, and marital status of those surveyed. Preceding the questions of primary interest within the study, a few background questions were asked. These include such items as whether or not the child uses American Sign Language, financial considerations of implantation surgery, whether there are other deaf family members or family members who use cochlear implantation, and what factors were most important to parents when considering implantation.

Parents were then asked two questions in order to determine how open they were to influence from outside sources of information. They were asked to indicate how much they agreed or disagreed with the following two statements, “I had already decided to approve cochlear implants prior to consulting with anyone regarding my child” and, “my decision was significantly influenced by the information/guidance I received from outside sources.”

Parents were then given a list of 15 potential information sources and were asked to identify any sources which informed their final decision. Subsequent questions requested that parents indicate how influential each information source was using a 1-5 scale (1-not influential. 2-somewhat influential. 3-neutral. 4-moderately influential. 5-extremely influential). Parents were then asked to select the most important role the information source played in the decision-making process, based on one of the following four characteristics: provided emotional support, provided general information, helped me visualize what to expect, and provided details for procedure.

The final portion of the survey allowed parents to type in their answer to the question, “What advice would you offer to parents who just found out that their infant is deaf?” The open-ended nature of this question permits a content analysis of parental perspectives discussed in the results section.

Results

Twenty-six surveys from parents of deaf children were completed. Nine were eliminated from the data set because they had not approved cochlear implants for their children. The seventeen remaining surveys were analyzed. All observed and significant patterns are investigated and discussed within the body of the results section.

Demographic Questions

According to the data obtained, the overwhelming majority of respondents were caucasian (88%), married (88%), and female (82%). Six percent identified themselves as African-American and six percent selected Other. The age of respondents varied from 20 years to 59 years, with the majority being between the ages of 30-49 (70%).

Survey Questions

Responses to the initial questions preceding the questions of primary interest indicate several important items regarding this sample. First, cost of implantation was not a significant factor for most of the parents and one hundred percent of parents indicated that the cost of implantation was covered by insurance. This is not surprising considering the evidence previously cited from Cheng et al. (2000) and Sorkin (2007). Second, nearly half (47%) of cochlear implant recipients from this sample use American Sign Language (ASL) while the remaining fifty three percent do not. Third, ninety-four percent of respondents do not have close family members who are deaf and none of them had relatives with cochlear implants. Thus, familial relationships with those in similar circumstances as their children were not common to this sample. Fourth, all children who received cochlear implants still had them at the time the surveys were completed.

Parents were asked which factors were most important to them regarding their child during the decision-making process. The options were academics, social, emotional well-being, and communication. Results indicate that the most important factor was communication (82.3%), followed by academics, social, and emotional well-being (5.9% each).

The overwhelming majority of parents (70.5%) either disagreed or strongly disagreed with the statement, “I had already decided to approve cochlear implants prior to consulting with anyone regarding my child.” In other words, most parents did not have strong opinions regarding what course to pursue before consulting with any information sources. Furthermore, most of the parents (94%) stated that they agreed or strongly agreed with the statement, “My decision was significantly influenced by the information/guidance I received from outside sources.”

According to Table 1, of the 15 potential information sources parents could consult with, the audiologist was listed most frequently (88%). The second most common were the parents of implant recipients, educational professionals, and internet/informative websites (76% each). Third was their ear, nose, and throat doctor (ENT) (71%). Fourth were children with cochlear implants (65%).

The children with cochlear implants had the highest percentage mentioned as being extremely influential (72.7%), followed by parents of cochlear implant recipients (53.8%). Next was parent support groups, deaf children and ENTs (50% each). Only 46.6% mentioned the audiologist as extremely influential.

From observing Table 1, it is also notable that 53% of parents consulted with at least 7 sources of information during the decision-making process.

Table 2. Reasons given for the importance or influence of sources on the final decision

With regard to important characteristics, the data in Table 2 indicate that audiologists were mentioned the most as an information source at eighty-two and four tenths percent, followed by internet/informative websites, educational professionals, and parents of cochlear implant recipients (70.6% each), ENTs and children with cochlear implants (58.8% each), and deaf adult/professionals (47.1%). The data reveal that some information sources were primarily associated with only one particular characteristic. With regards to providing emotional support, the following were most frequently identified sources: parents of cochlear implants and parent support groups (29.4% each), followed by family members/friends (17.6%). Regarding providing general information, the following were most frequently identified: internet/informative websites (41.2%), followed by audiologists and educational professionals (29.4% each). Regarding helping to visualize what to expect, the following were most frequently identified: children with cochlear implants (52.9%), followed by audiologists and educational professionals (29.4% each), and parents of cochlear implant recipients (23.5%). With regards to providing details for procedure, the following were most frequently identified: ENTs (52.9%), followed distantly by audiologists (23.5%) and internet/informative websites (17.6%).

The final question for the survey was open-ended. Respondents were asked, “What advice would you offer to parents who just found out that their infant is deaf?” Of the 17 parents who completed the survey, 14 answered this question. One of the most frequently referenced ideas was that of talking to many people and doing thorough research, a topic mentioned by 10 of the 14 responding parents. An example of this is expressed by one respondent who advised parents to, “Consult as many people as possible. There are so many options available, it can be overwhelming. Talk to people.” The idea that each child has unique needs and there isn’t one correct solution for all children was referenced by five parents. One parent stated that, “No road is the same. Every parent decides a different course for their children.” Another parent with a similar sentiment stated that, “Every families’ decision is unique [sic]”. Other topics were also addressed, such as expressions of comfort, a sentiment mentioned by five parents. One parent expressed comfort by saying, “Your baby can do anything he/she wants to do in life.” Another parent stated, “The sky is the limit for children who are deaf today!”

Discussion

The four-part hypothesis inherent within this study is that parents are more likely to consult certain information sources than others, parental decision-making is highly influenced by the sources, some are more influential than others, and each source is valuable for reasons unique to the source.

Parents are More Likely to Consult with Certain Sources

The data in Table 1 indicate that certain information sources are utilized more frequently than others. Audiologists, parents of cochlear implant recipients, educational professionals, internet/informative websites, and ENTs are sought out far more frequently than family doctors, family members/friends, pediatricians, and the media/news. This supports the hypothesis that certain information sources are consulted more than others.

Information Sources Influence Parental Decisions

Data from Table 1 provides support to the claim that information sources are important to the decision-making process, indicating that fifty-three percent of parents consulted at least seven sources of information before making a final decision. Furthermore, seventy-one and four tenths percent of parents who answered the final, open-ended question advised others to counsel with many information sources, and to do thorough research. It is clear that parents consider outside sources of information to be very important when regarding making a decision. This indicates that information sources potentially influence the decision-making process.

Additional support for the claim that sources influence decision-making is that an overwhelming majority of parents indicated that they did not have strong opinions regarding what course to pursue before consulting with anyone (70.4%). Even more parents indicated that information sources moderately or significantly influenced their final decision (94%). These data combined with evidence of the extensive consultation that takes place between parents and information sources substantiate the hypothesis that information sources are influential to the decision-making process.

Varying Degrees of Influence of Each Information Source

Table 1 indicates that certain information sources stood out in terms of their influence on parental decision-making. For example, children with cochlear implants, parents of cochlear implant recipients, deaf children, and ENTs were extremely influential to parents. Whereas, deaf adults/professionals, adults with cochlear implants, educational professionals, and hearing persons involved in the deaf community were not frequently identified as being extremely influential. Thus, certain information sources are more influential than others.

Further substantiating the claim that some sources are more influential than others is the fact that there is not a strong association between the percentage of parents consulting with a given source and the relative influence of that source. For example, a significantly higher number of parents consult with audiologists (88%) than children with cochlear implants (65%). However, children with cochlear implants were identified as being extremely influential far more often than audiologists (72.7% to 46.6%). In other words, the relative influence of a source is not determined by how often a source is referenced by parents, indicating influence is determined by the type or quality of information the source provides. This supports the hypothesis that some sources influence parents more than others.

Reasons Each Source is Valuable

Results in Table 2 reveal that each source provides a unique type of information, thus being valuable to parents for a unique reason. The two most substantial examples demonstrating this claim are ENTs and children with cochlear implants. The trait parents most commonly associated with ENTs was providing details for the procedure (52.9%). The trait most commonly associated with children with cochlear implants is helping parents visualize what to expect (52.9%). These two sources showed the strongest association with a particular trait. This supports the hypothesis that different sources of information are useful to parents for different reasons.

Conclusion

Parents of infants born deaf are faced with many options. Those who ultimately approve cochlear implantation for their deaf infants are significantly influenced by information sources that guide and educate. Some sources are utilized by most parents, such as audiologists or parents of cochlear implant recipients. Although there are many places and individuals that parents can turn to for information, not all sources provide the same type of information. For example, ENT’s were valuable to parents because of the surgical procedure details they provided, but children with cochlear implants were valuable because they helped parents visualize what to expect. Additionally, it is apparent that some sources of information are more influential than others in the decision-making process, such as a child with a cochlear implant. Furthermore, the most frequented information source is not necessarily the most influential. Ultimately, parents are the ones who make the decision for their children, but the value and influence of their sources of information on their final decision cannot be understated. As this study is primarily exploratory, further research should be conducted with a larger sample size in order to obtain more definitive conclusions.

References

Appendix