Communicating with Parents and Prospective Parents with Disabilities: A Guide for Clinicians

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Introduction

Clinicians should ensure they communicate effectively when they work with disabled parents. Sharing information in understandable ways helps empower parents to make thoughtful decisions about their own health and their children’s health. People with disabilities CAN understand their medical or therapeutic treatments, although they may need different explanations or accessible materials or communication strategies. Explaining things differently or enlisting help to help make explanations accessible are not insurmountable barriers. Everyone can communicate.

People with disabilities may have different means of communicating with their clinicians. For example, some people may not use oral speech and will use another form of communication, like American Sign Language (ASL), a tablet with a text-to-speech application, or a communication board. Every person with a disability has individual strengths and weaknesses. It’s important to pay attention to individual patients and understand what they need so you can effectively communicate with them.

Tips and Tricks

Here are some strategies that you or your organization’s communications team can use to help make your communication with parents with disabilities more accessible.

  • Use accessible language when talking to patients or clients with language-related disabilities or who are not native speakers of English. People with intellectual disabilities, people with lower literacy or educational attainment, some autistic people, and English-language learners may struggle with unfamiliar terms. While using technical language can be more efficient when communicating with fellow professionals, laypeople may be intimidated by jargon, and less familiar with health terms. It is especially important to remember this if the patient or client has a background that affects their communication skills.
  • Conversely, remember that some parents with disabilities CAN understand technical terms. Some parents may be clinicians themselves, or they may have educated themselves about their disabilities to communicate effectively with the professionals who work with them. Use your best judgment when communicating with parents with disabilities; they can come from a variety of different educational backgrounds or have different cognitive abilities. Assuming someone with disabilities does not understand medical terminology when they do can be insulting.
  • Remember that the onus is on you, the clinician, to ensure your patient understands you. Being understood will help your patient or client work effectively with you to manage their condition and raise their children.
  • Be patient when describing conditions, procedures, or recommendations. Sometimes people with disabilities may need more time to internalize information. Sometimes people with disabilities may be unfamiliar with technical language or health jargon. Take your time and check that the other person understands what you are talking about before moving on to the next subject.
  • Use accessible materials. Some people may have low vision, an intellectual disability, dyslexia, or another disability that affects their ability to read printed material. They may also be English-language learners who are still getting used to using the language. Methods to make materials more understandable include
    • Accompanying written materials with photographs or accessible illustrations to help people understand the text. There are several websites that provide royalty-free photographs, such as Unsplash. You can also license illustrations designed specifically to communicate with people with disabilities, like the SymbolStix library. If you do not have the time to do this yourself, your organization can possibly work with a communications professional to translate technical information into accessible documents.
    • Providing large-print documents for people with low vision who can still read printed documents.
    • Writing plain-language materials that explain medical information or bureaucratic procedures in a clear, understandable way that avoids abstract language and confusing jargon.
    • Providing materials in an alternative format, like audio recordings or captioned/subtitled videos. If you can, ensure these videos have captioning available for Deaf/deaf or hard-of-hearing people, or people who may have difficulties with auditory processing.

Resources

The University of California, San Francisco, has a resource on communication supports for people with developmental disabilities through their Office of Developmental Primary Care.

The Autistic Self Advocacy Network has a summary of some access needs that people on the autism spectrum may present with.