Pediatrics, Clinical Practice

Supporting families on their hearing journey

Online resources that can help support families with children who are deaf/hard of hearing in their quest for information and resources.

Hearing healthcare professionals have both the honor and responsibility of partnering with families on the journey of raising a child who is deaf/hard of hearing. Just a generation ago, information that families had access to was most often supplied by the professionals in their lives who decided for them as to what was needed. Today, a family can literally walk out of a hearing healthcare appointment and Google “deafness” or “hearing loss” and get thousands of ‘hits’. But the question remains – What information is most useful and needed, without biasing attitudes that might affect a family’s own process towards informed decision making?

Families need information from a variety of sources to make good decisions: Professionals, parents, deaf/hh adults, information/resources (books, websites etc.) and from their own community’s resources that are available. There is a huge learning curve that takes time to appreciate and utilize all these perspectives and resources, and each parent is unique in terms of how much and when information should be delivered to them. Hearing healthcare professionals who have good collaborative partnerships with families use both their skills as a provider in having sensitivity to a family to know ‘how much is too much’ and also understanding that they are not the only ones that contribute to a family’s forward progress. Professionals can connect families with other families, expose them to deaf and hard of hearing adults across the modality spectrum to get those ‘life experiences’, and let the family take the lead in what kind of resources they are requesting and asking for. There are many resources that are wonderful for families to access. The following are a sampling of resources that can be quite useful for clinicians to share with the families they support.

  • Question Prompt List (QPL)

The QPL has been described for parents in this way, “Many parents have questions or concerns about their child’s hearing loss that they want to discuss with their audiologist. During busy clinic visits, parents may forget to ask their questions. Parents like you helped create this question sheet to help parents get the information and support they are seeking. The questions on the list are organized by topic (e.g. Our Child’s Diagnosis; Family Concerns; Management of Devices; Support Systems, Now and in the Future). Some questions may matter to you more than others. If you find it helpful, you can use this list to help you remember what to ask.”

There are 32 questions in all in the categories listed above and a few are noted here below:

1. How can I share the importance of hearing devices with family and others?

2. Why does my child react to some sounds?

3. How much should my child use his/her hearing devices?

4. What can we do at home to encourage our child’s communication development?

5. What resources are there to build children’s confidence, resilience, social skills?

6. If we want to learn sign language, how/where do we start?

7. I’d like to talk to other people in our situation. How can I meet other parents with children with a hearing loss, and/or adults who are deaf or hard of hearing?

8. How can I help our childcare provider support our child’s communications needs?

Here is an article further describing the QPL, along with the pdf of the full QPL document.

 

  • Maximizing your child’s visual access: Tips to create a visually rich world for your child who is deaf or hard of hearing

A product from the H&V Family Leadership in Language and Learning (FL3) Project

Babies with typical hearing can hear their parents/caregivers and daily life at home or in the community, even without trying or not directly looking at the speaker. Children who are deaf/hard of hearing may not have the same access to language and information through sound and benefit from an abundance of visual information. Parents and caregivers can learn and apply simple changes in their routines and the child’s environment to maximize access. Regardless of a child’s level of hearing, a child can use their vision to better communicate, develop stronger language skills, and to create lifelong strategies. This beautiful 4-page document is beneficial for all families who have children who are deaf/hard of hearing, across all modalities and degrees of hearing loss. Practical day-to-day tips are shared. Utilizing light, tips for in the car, and making family time fun are all included in this document. Click here. In Spanish, click here.

 

  • Parent take-aways for language, literacy, and social-emotional development

Eight different Parent Tip Sheets have been created for parents and caretakers of children who are deaf/ hard of hearing to use with the support of experienced providers. Each Tip Sheet briefly describes the developmental process of infants and toddlers post-identified hearing condition for cognitive, social, emotional, language (semantics, syntax-morphology, pragmatics, phonology –auditory and visual), pre-literacy and literacy development. These Tip Sheets provide suggestions for parents and caretakers, for fun, everyday activities to enhance their baby’s development in these aspects! See Parent Take-aways on the Hands & Voices website.

 

  • Children’s Safety Toolkit

Through the support of the Hands & Voices O.U.R. (Observing, Understanding, Responding) Children’s Project, members of this learning community created a resource for parents and professionals in an easy to use Parent Safety Toolkit. This new resource can help parents teach and model behavior and take specific actions that will increase the safety of their deaf/hard of hearing kids. This is also an excellent resource for parent-to-parent support conversations and professionals to share with the families they support. You can find the toolkit here.

 

  • Guide for parent-professional partnerships in the hearing healthcare setting

The relationship between the family of a child who is deaf or hard of hearing and the child’s hearing care provider (HCP) has the potential to be long-term and consequently requires a mutually respectful relationship. Families feel supported by professionals when they perceive the relationship to be a collaborative partnership built on trust. This process evolves over time and includes honest and clear communication, understanding, and empathy. Developing active listening skills can help HCPs create these positive connections with families. Professionals are reported to be a critical source of support for families when a family first learns their child is deaf or hard of hearing. Difficult news needs to be delivered an empathetic and caring way. Professionals who can integrate family support and quality service provision into their practice have a structure for success. The Guide explores these topics and more. You can access the guide on the Phonak website.

 

  • COVID-19 related resources for families

Hands & Voices has created a dedicated COVID-19 webpage specific to resources to support families with children who are deaf and hard of hearing and family support providers. This webpage includes family support resources such as; activities families can do at home with their children during the quarantine and how to talk to your children about COVID-19, education resources such as; fact sheets and statements on students’ rights and educating students with disabilities during COVID-19, eLearning and Accessibility resources such as, captioning, speech recognition apps, accessibility tips, and other important topics during this time like Children’s Safety, Information from National partners, and Resources in Spanish. You can access the webpage here.

 

My daughter Sara is now a thriving successful deaf adult.  I have a lot of people to thank for this — it was through partnerships with professionals and the resources that were provided in our journey to successfully navigate her health, school, and community access.  I am so grateful to those hearing healthcare professionals who took the time to help answer the questions we had, provided us documents that helped, and for connecting us to other people and organizations that also helped. That’s what Hands & Voices is here for, to partner with professionals to support the families they serve.

Hands & Voices has a wonderful organizational partnership with Phonak, who has not just given lip service to the idea that families should be a part of resource development, but has partnered with us to help support the dissemination of information that Phonak develops.

 

The Parent guide for understanding best practice recommendations for children with unilateral hearing loss will soon be published on the Phonak website. Stay tuned!

 

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