My World: Including Children in their Own Rehabilitation, presented in partnership with the Ida Institute

Editor’s Note: This text course is an edited transcript of a live webinar. Download supplemental course materials.

Learning Objectives

• Participants will be able to describe the challenges of working with children with hearing loss and their families.
• Participants will be able to explain the clinical benefits of using play therapy to engage the child in conversation about their communication needs, successes and challenges.
• Participants will be able to describe how to use the My World tool in their own practice.

Introduction

Anna Mette Jeppeson:  The Ida Institute is an independent non-profit organization that was established in 2007.  It is funded by the Oticon Foundation and is a vast collaborative global community.  All the tools and resources that we create are freely distributed and publically available on our website (https://idainstitute.com).  

Even though we have seen vast improvements in technology over the last 10 years, and even though we see more people having hearing loss, we do not see a greater uptake of hearing aids or services to help overcome the negative consequences of having a hearing loss.  Because of that, we believe that audiologists have to put more focus on the human dynamics associated with having a hearing loss if we want more people to seek help.  

We use ethnographic videos that depict real-life situations at the clinic or in the homes of persons with hearing loss, and they give us a unique insight into audiological practice or the challenges hearing-impaired individuals face in their daily lives.  This gives us a chance to reflect on situations that exist in the real world.  In these films, you will see patients reflect on their hearing loss in a way that is often uncommon during a typical consultation session.  The films offer a valuable peek into the patients’ perspective on their hearing loss. 

When we watch the videos, it is important to keep in mind that it is not our intention to be critical towards the audiologist we see in the videos, the patients, or the families, but it is our intention to help hearing care professionals reflect on their own clinical practice and become more patient-centered. 

The first video is called Kathleen and her family.  Kathleen is a young adult who has lived in a family who decided not to give attention to her hearing loss or to speak about her hearing loss.  In this video, you will hear Kathleen tell what that has been like. 

I would like you to think a about the following questions:

• What were the challenges faced by the parents?
• What were the challenges faced by Kathleen?
• How could the audiologist have helped address the parents’ and Kathleen’s challenges?

There were some things I noticed the parents say.  It seems the audiologist has provided them with too much audiology terminology about decibels and frequencies.  The mother keeps saying that she had a very hard time understanding what was being said.  She also talks about what they really needed was information about what Kathleen is able to hear and what the consequences and challenges are of that hearing loss.  I believe the mom was asking for more human information versus technical information.  Because of that, they ended up treating Kathleen like a normal child, which may have been a good thing to do, but they simply did not know what else to do. 

What challenges did Kathleen face?  I hear Kathleen bring up repeatedly that she tried to be like everyone else, even though she was not.  She probably did that because there was no focus on her hearing loss in the family.  She also tells us that there were no ground rules in the family about communication that could have helped her to be more communicative and involved.  Instead, Kathleen withdrew from social situations.  She talks about how she would take a walk with the dog in the woods, and she did not play with other children often. 

The audiologist should have given more focus to listening and hearing both the parents’ story and Kathleen’s story to find out their needs.  It is clear in this situation that their needs were not met.  They received too much technical information and not enough information on what Kathleen is able to hear and what her challenges may be.  It would have been more helpful for the audiologist to focus on strategies for handling challenging situations and help Kathleen try these strategies. 

Engaging Children

With this video in mind, I would like to introduce you to the My World counseling tool.  At the Ida Institute, we host regular seminars in cooperation with hearing care professionals, academia, and from clinics to help us develop tools that can address issues related to the human dynamics associated with hearing loss.  At these seminars, we repeatedly heard from pediatric audiologists who request we look into the pediatric area.  Because of that, we decided to run a special pediatric focus group in early 2011, which was a starting point of the development of the My World tool.  

The development process of the My World tool had three steps.  We started with a pediatric focus group in January 2011.  We invited audiologists from the United States, United Kingdom, New Zealand, and Denmark to meet and create an understanding of the challenges experienced by pediatric audiologists.  We also asked them to explore how existing Ida tools could be changed to form solutions, and then we asked them to propose new tools that were presented to the rest of the group and then filmed. 

Later in 2011, we hosted a co-creation workshop in London, where we began to explore the tool prototypes and created more refined versions.  At this point in time, we invited a multidisciplinary group made up of audiologists, speech therapists, teachers of the deaf and audiological physicians.

Lastly, we started to develop the final tool.  The prototype was tested in field trials, after which we received feedback on how the tool worked in real life and how the tool should be changed.  We then refined it and sent it off for production. 

Focus Group

In the focus group, we asked the participants two questions: What are the unique challenges facing professionals who work with children with hearing loss and their families, and how can existing Ida tools be adapted or improved to address some of these challenges?  We asked the participants to name the three most significant challenges that they saw.  One of the most popular responses was that it was difficult to include the voice of the child in the appointment.  Many of the audiologists felt that they did a good job with the parents, but they did all of the goal-sharing and talking with the parents and not with the child.  They wanted the child’s input on his or her daily life.

At the end of this focus group, we started to explore the named challenges more deeply, and the participants made tool drafts.  One group came up with the idea of creating figures representing children and those that are significant to them in different environments.  The tool was to enable the child to express what happens in the most important everyday environments, such as home or school, and then select the people that are important to them in these environments.  By doing that, the child should be able to provide the audiologist with his or her point of view.

Co-Creative Lab

In London, we then hosted the co-creative lab where we refined this prototype.  The multidisciplinary group came up with a prototype as seen in Figure 1. 

Figure 1. My World prototype used in field trials.

Final Product

This prototype was brought to several clinics, and we asked a group of pediatric audiologists to test the tool for us and give feedback.  After the feedback, the tool was submitted for design and production.  The My World tool as it looks today is shown in Figure 2.

Figure 2. My World tool.

In this tool, we have three different environments: home, school and outdoor.  There is a range of different figures, including teenagers, adults, and grandparents, as well as a baby.  We have a range of different toys that can be used.  We have hearing aids, FM systems, means of transportation, furniture and emoticons so the child can show how they feel in different situations.  We also have forms that can be used after the session to document what was discussed and agreed upon in the session. 

How can a tool like this help us work with children?  When we work with patients, we usually share the decision-making and negotiate goals with the parents and the teachers.  We do that for a good reason.  We recognize that each family is unique, and the family is most often the expert on the child’s abilities and needs.  It makes sense to go in that direction.  In adult rehabilitation, we know that when we are able to move towards more patient-centered care where the client uses their experiences to find their inner resources to self-manage their hearing loss, it leads to optimal outcomes.  Can we apply these principles in the pediatric setting as well?  Can we somehow explore the communication needs, challenges, and successes that are important to the child and develop a common understanding?  Intuitively, it seems right to do this, but how do we do it? 

Play Therapy

We all know that when a child comes into a clinic with his mom or dad, they are not very likely to sit down and start to talk with us.  It is not easy for us to start asking the child a lot of questions.  One thing we do know from clinical practice is that if we have toys in our clinic, children are much more likely to play.  After a while, they will even start to play with us and speak to us through the play. 

This thought of using play as the vehicle for communication is not new.  Play therapy has been part of the therapeutic scene for over 100 years, and it is increasingly used by professionals to treat children experiencing a broad range of problems.  With play therapy, the child uses materials to act out feelings, thoughts, and experiences that they are not able to meaningfully express through words.  Play therapy has been accepted as a developmentally appropriate intervention for many children experiencing a broad range of emotions and problems. 

Play therapy is a good way to achieve patient-centered care with children.  By using play in this way, we can help ourselves and the parents understand the communication difficulties from the child’s perspective.  We help the children understand and organize their own experience, and by telling their own story, we help them externalize any problems that they may have.  Then we help them find new strategies for dealing with those problems.  In this way, the tool allows the child to become the expert in their own experience of having a hearing loss.  We can help the child try out familiar and unfamiliar worlds with having a sense of security.  When they play it, they know that the consequences of the real world do not apply in this setting.  That allows the child to consider alternative options and solutions without any risks. 

How effective is play therapy?  Research has shown many different positive outcomes in children who have participated in play therapy.  We see significant improvements in children’s self-concept, social adjustment, personality, anxiety levels, adaptive functioning, and family functioning (Baggerly & Bratton, 2010; Oualline, 1975; Post, 1999). 

With this tool of movable figures, we can use aspects of play therapy that have been documented to be very effective for helping children.  By using this, we can help the children communicate about their own hearing loss and give the children a voice in their own rehabilitation.  Both the audiologist and the parents will get some valuable insight into the child’s everyday life with a hearing loss. 

My World Tool

How do we use the My World tool?  First, choose the environment that you would like to explore together with the child, and then do your best to be curious.  Be curious about what the child tells you.  Very often, we as audiologists do too much of the talking.  Keep in mind that we want the child to talk. 

Step number two is to understand the successes and challenges that the child experiences through role play, by using the movable figures.  Then we try to reinforce the successes.  We give the children confidence that they are doing great.  Then we try out new options for the challenges that they face. 

Lastly, we document the decisions and the strategies that we have agreed upon in documentation form. 

This next video shows the My World tool in action.  The video is done with Emily, who is a 7-year-old girl with Treacher-Collins syndrome.  She has a bilateral conductive hearing loss and uses an implanted bone conduction device on one ear and a hearing aid on the other.  Emily’s audiologic care was complicated due to significant phobia of medical services that developed around two years of age.  Using the My World tool when she was five and six years of age allowed her to share her perspectives through the play.  Emily’s audiologist in the video, Eileen Rall, has used the tool twice with her, exploring communication in the home setting and to learn more about Emily’s communication partners at school.

Using the My World tool, what does Eileen learn about Emily’s interaction with the other children at her school?  It is clear that there is something about Emily, Hannah and Semerin.  Emily says that Hannah is her only friend at school.  It is clear that Emily has some issues with the interaction with the other children.  Also, by seeing Emily play with this tool and by hearing her talk about the Hannah/Semerin situation quite a bit, Eileen learns that it is probably a good idea to help Emily with possible strategies. 

How does Eileen use the tool to help Emily explore alternative communication strategies to engage with her friends?  I noticed that Eileen gets Emily to role play what happens at the school, and then she helps Emily to think of alternative strategies.  By using this tool in this way, Emily gets to try alternative strategies in a safe environment.  Eileen also gets a chance to challenge Emily’s solutions and help her explore further alternatives.

How does the session help Emily develop self-confidence in the way she manages her hearing loss?  Eileen takes a very positive approach towards the conversation with Emily and she helps Emily to see the positive sides of herself.  Then she helps her practice strategies in order to show her that she can manage her hearing loss.  By doing that, she helps Emily build self-confidence about being a child with hearing impairment.

Aims and Objectives of the My World Tool

The aims and objectives of the tool are to enable a patient-centered dialogue with the child.  It provides a supportive environment for children to tell their own experience, and it enables a joint focus and attention on what is important to the child.  This information has not gone through the filter of the parents first; we hear it firsthand from the child.  This can foster discussion led by the family and the child, related to their reality. 

The tool can help externalize issues related to the hearing loss.  It can provide an insight into positive experiences and challenges faced by the child and family.  It also enables audiologists to hear details not otherwise obtained and to enable joint goal setting between the audiologist, the child and the parents. 

How to Interact with the Child when Using the My World Tool

When we interact with the children, we need to be cognizant of any anxiety the child may have.  We have to build trust in the child before we introduce the tool.  Very often this is started by not going straight away to the child, but to build some trust first using play therapy techniques.  When we use the tool, we have to keep in mind to be sincerely curious and to listen carefully. 

We can help the child by asking open-ended questions such as, “What would you do if…?”  We try to challenge the child a bit like we saw Eileen doing.  Help the child role play whatever they experience and then discuss it with them.  We need to ensure that the child has heard the message or question correctly and understands what to do.  If they do not understand, they may get frustrated.  Convey to the child that there is no right or wrong answer.  We are interested in hearing their story and the way they experience it.  This is why we try to be as quiet as possible and have the child play together with us and put words to what they experience. 

Give the child sufficient time to respond.  Whenever we ask a question, leave time for them.  It is very important to tell the parents that they will have an opportunity to speak later.  Parents want to help, and if the audiologist asks a question, very often the parents will start to answer it.  When we play with this tool, they are welcome to sit and watch, but we will ask them to not speak as we play with it.  

Summary

With the My World tool, we can include the children in their own rehabilitation.  The tool addresses the transition from family-centered to patient-centered care.  It includes core concepts pf play therapy and can be used at any point of the appointment when the child’s perspective will inform the therapeutic process.  We have to keep in mind that the child has to be ready for playing together with us. 

After you leave this presentation, reflect on how you think the My World tool addresses the challenges you experience in daily practice. 

References

Baggerly, J., & Bratton, S. (2010). Building a firm foundation in play therapy research: Response to Phillips. International Journal of Play Therapy, 19(1), 26-38. doi: 10.1037/a0018310.

Oualline, J. (1975). Behavioral outcomes of short-term nondirective play therapy with preschool deaf children (unpublished doctoral dissertation). University of North Texas, Denton.

Post, P. (1999). Impact of child-centered play therapy on the self-esteem, locus of control, and anxiety of at-risk 4th, 5th, and 6th grade students. International Journal of Play Therapy, 8(2), 1-18. doi: 10.1037/h0089428.