What Do Parents Have To Say About Professional Bias?
When parents did not make the decisions for their child the majority did not even know if decisions that were made were good or bad.
I have always struggled with the word “unbiased.” What does it really mean to be unbiased? Does it mean that you don’t have an opinion, that you don’t feel strongly or passionate about what you know or what you think you know? Does it mean you are indifferent? Uninvolved? Disinterested? I doubt any of us can say we truly feel that way about the choices we make for our children. So how do we, as parents and professionals, share information in an unbiased manner? I believe many people think they are offering unbiased information if they simply offer a choice of options, but what they don’t take into account is the manner in which they present the information. Many times the “other” information is presented with a dismissive attitude or with the implication that it is inferior. Some people are openly biased and feel justified in sharing their bias with others. Still others do an amazing job of sharing information in a supportive, balanced manner.
I have wondered to myself if it is possible for a professional to share bias in an ethical manner. If someone admits their bias, but can accept and support the right of others to have different opinions, then isn’t that acceptable? There have been times during my journey when I have sought out information about my daughter’s hearing loss from professionals. Some of these professionals have been dear, trusted friends and I found myself wanting to know what they thought I should do. What choices would they make if they were me? Is it ever a professional obligation to share your bias if you think it will steer a parent away from what you think is a bad decision? Is it possible to be ethically biased? This train of thought prompted me to submit an abstract about this topic to the 2009 National EHDI conference.
The first thing I did was look up the definitions for “bias”, “unbiased”, “opinion” and “professional opinion”. I found a very helpful list of “Indicators of Bias” which included the following:
That fairly simple exercise was a good start. Then I decided to pick Leeanne Seaver’s brain. Leeanne offered this insight “we shift from professional/personal opinion to bias when we go from appropriately sharing the benefit of our experience/knowledge to intentionally manipulating a family.”
Back to my original question - Is it possible to be ethically biased? The indicators of bias and Leeanne’s comments both focus on intentional manipulation of people and/or information. Therefore, I feel it is not possible to ethically share a bias, since intentional manipulation is involved.
Anyone who offers information to a parent needs to ask themselves this question: “am I trying to control/influence the parent’s decision or am I providing them the chance to explore the information?” If we think we are protecting parents from making a bad decision, are we not acting as gatekeepers? Professionals most likely will not be a constant in the child’s life -the parents will-so we need to empower parents and give them access to all options. Parents typically are dealing with some grief, although not always, and may need repeated opportunities to digest the information. I think we should avoid telling parents what to do-even if they ask. Encourage them to take ownership of decision-making and help them to develop decision-making skills if they don’t have them.
I decided to create a parent survey to find out what kinds of experiences parents have had when getting information from professionals about communication and education options for their deaf or hard of hearing children. I wanted to know what parents considered biased information and what they considered balanced information. Most importantly, what did parents find helpful and what did they find harmful? I developed a 20-question survey and enlisted the help of the H&V network for distribution. I was not disappointed! I had 99 completed surveys submitted and I want to thank all the people who took the time to fill it out and distribute it to their networks.
Of the parents surveyed, almost 80% of their children were identified before three years of age and the majority of the children are now five years or older. Based on these results, I concluded that most of these parents have at least two to five years of “experience” navigating services for education and communication. Ninety percent of the children had a bilateral hearing loss and the majority of the children had significant hearing loss in at least one ear, but all levels of loss were represented, from mild to profound. Also, keep in mind that since the majority of people who responded were active in the H&V network, these parents are most likely connected to resources and other parents. No data on socioeconomic status was collected. The survey was available in Spanish but no valid surveys were submitted. The term “professional”, for the purposes of this survey, referred to a variety of different people, including Audiologists, Pediatricians, Deaf Education (TOD) teachers, General Education teachers, Early Interventionists, Speech Therapists or any other professional that a parent may have consulted about their child’s hearing loss.
When parents were asked if they believed they received complete and balanced information about all communication options and educational programs from professionals, there was a 50/50 split. Although I wasn’t surprised by this result, it was disappointing to see that we still have so far to go. When asked if professionals suggested that parents talk with different kinds of professionals to learn more about all communication options or educational programs, 62.6% said no. I maintain that one professional cannot possibly represent all options equally, since they are likely to have personal and professional experience in their area of specialty, but not others. As a parent myself, I have always maintained that one of the best ways for parents to get information is to talk to many different parents, professionals and deaf and hard of hearing community members and visit programs that represent different philosophies. I do not believe that one professional can do justice to all options and, if they try, then they are probably over-simplifying the situation and setting up the parent to depend on them as the source of all information, rather than encouraging the parent to take the lead.
Fifty-five percent of parents said it was not easy to learn about the different communication options and 61.5% said it was not easy to learn about educational choices for their children. Many parents commented that they were only told about local services and didn’t realize that other programs/options existed, mainly because some services were not available in their area. Although I wish it wasn’t the case I do know many families that moved to access appropriate programs for their child, including my own family. I feel that if parents are not made aware of all options, they are making decisions based on a limited understanding of what is possible. There were also some parents who commented that they were given information, but they simply did not understand it, for a variety of reasons.
Seventy-eight of parents felt they had flexibility to try multiple options and could change their mind if they felt a different program or communication method might work better for their child. It is encouraging to see that most parents feel they can explore options. I think this leads to empowerment and ownership of the decision-making.
When parents were asked how they learned about the controversies regarding educational and communication options, the majority said they learned on their own or from other parents. 10% were not even aware any controversy existed, while 37% learned from professionals. My personal opinion is that professionals have a responsibility to inform parents that they will be exposed to a variety of opposing opinions, sometimes in a biased manner. Parents can feel like they are stepping into a minefield when they first find out about their child’s hearing loss due to the numerous opinions and mutually exclusive philosophies that exist. Parents can be subject to extreme statements that can be hurtful and can face criticism for the choices they eventually make. Many times, if parents have a negative experience early in their journey related to a communication or educational placement, they might reject that option, when ultimately it may have been the best choice for their child. The comments I gathered from parents indicated that some of them had experienced negative interactions or biased statements from other parents, professionals in a variety of fields and the Deaf and hard of hearing community. I am not suggesting that we should scare parents unnecessarily, but rather give them a “travel advisory” as they begin their journey.
One very interesting and not surprising result was that 80.8% of parents felt that talking to other parents was the most helpful way that they received information. Parents also highly rated interactions with professionals, websites and written materials, and many commented on the invaluable information they received from the deaf and hard of hearing community, but parent-to-parent support was key!
Finally, one of the last questions I asked was whether parents felt they were in control of making decisions for their child or whether professionals were in control. Ninety-one percent of parents said they felt in control and, of those parents, 92% were happy with the decisions that they had made. Nine percent said they felt professionals were in control and, when asked if they were happy with the decisions made, 30.8% said no and 61.5% said they didn’t know! This was very significant to me. When parents did not make the decisions for their child the majority did not even know if decisions that were made were good or bad. How can a parent invest their time and energy into supporting a choice if they don’t have ownership of it and/or don’t understand what that “choice” means?
Summary of challenges:
Summary – Good News
Parents need and want information–we can debate about “how much information is too much or too soon” and fret over whether they are understanding the information that they are given, but ultimately they have the right to the information and the responsibility to make decisions for their child. I think it is important to keep this in mind as we explore models for successful EHDI programs and evaluate information to be shared with parents and professionals.