By Roqayah Ajaj
An important part of quality healthcare is a positive relationship between the healthcare provider and the patient. This relationship should be built on trust between both parties, as well as on mutual respect and dependable confidentiality. As with other settings, doctors’ offices and hospitals can be overwhelming to people with disabilities, especially if staff are not adequately trained. At the same time, people with disabilities don’t always have the chance to practice advocating for themselves at healthcare visits and are not empowered to ask for what they need, as they are often unsure of whether the providers can accommodate those needs.
Because of this, people with disabilities, such as people who are blind, have a variety of concerns before and during their health appointments. Some of these concerns, which I’ve adapted from Heydarian et al (2020), include:
- Does my doctor think I am competent? How can I show them that I am?
- Does my doctor see me as a whole person, or just as my disability?
- Does my doctor think I can take care of myself?
- Is my doctor going to share my private health information with the relative I have accompanying me today?
- Is my doctor explaining everything to me in the same way they would with any other patient?
- Will my doctor touch me without warning?
- Is my doctor rushing through my appointment?
- Will I leave the appointment understanding what I need to understand about my health?
- Will my doctor ask me basic questions about my blindness, or do they understand my condition?
- Does my doctor feel comfortable talking with me directly?
In the paper, the authors also provide a good summary of why healthcare staff should care about developing strong relationships with patients with disabilities and the connection that this has to equitable access to healthcare:
“Many [people who are blind] consider it primarily their responsibility to approach the healthcare visit with a positive attitude, demonstrate their competence, and correct misconceptions about blindness. This may be a needless stressor for a patient who is seeking healthcare. Time that the patient spends managing the [health care provider’s] impression of them and educating the [health care provider] about their disability reduces access to healthcare by using time otherwise dedicated for healthcare appointment activities” (Heydarian N., et al. 2020, p. 4).
Patients who are blind or visually impaired deserve to be provided with the same attention and professionalism that patients without disabilities receive. This is about equity.
The feeling of inclusion and empowerment starts, for a patient, with their experience at the reception desk. This interaction sets the tone for the entire visit, demonstrating for the patient what they might expect from the rest of their time at the appointment.
Make sure that your reception area is inclusive of people with visual impairments by always verbally calling for the next person in line rather than just gesturing physically. As always, basic etiquette when interacting with a person who is blind or visually impaired must include talking to and assisting the patient directly, rather than speaking to them through their companion or asking the companion to fill out paperwork on their behalf. Instead of making an assumption about their needs, ask the patient how they want to be served. Some good questions to start with are:
- “Do you want someone to guide you to the exam room?”
- “In what format would you like your documents?”
- “Do you want your sighted companion to see your documents, or do you want to keep them private?” (What I would really advocate for is for healthcare providers to assume that the individual wants their information to stay private and to require a consent form if the patient wants their companion to see their paperwork and assist them.)
Truly inclusive healthcare means that documents are available in multiple formats (Braille, large text, or electronic) so that all patients can access and fully understand them. Have screen readers installed on any computers or tablets that patients may need to use when registering. Offer to read aloud any important documents to the patient, and make sure that you have a private place in which to do that. When it’s time to sign a document, ask to guide the individual’s hand to the signature line or, even better, provide a signature guide.
After completing the documents, you may provide guidance to the individual who is blind as they move to the next phase of their visit. Make sure you follow common etiquette when doing so. Additionally, it’s important that all staff and providers:
- Introduce themselves to the patient right away
- Ask the patient how they would like to be guided
- Make sure the patient is informed, particularly when being passed off between rooms, of:
- Who they are with (name, title)
- Where they are
- Why they are there
Healthcare providers are the centerpiece of any medical visit. In addition to following the above guidelines regarding documents and navigation, they should understand that patients can sense their stress or discomfort. As the healthcare provider, make an intentional effort to put the patient at-ease through your communication style. If you plan to use any tools or instruments on the patient, explain their use and invite the patient to touch them; this reduces any stress or anxiety the patient may be having. Finally, provide clear, precise descriptions of scans or images (including shapes and colors), pointing out any abnormalities, and explaining why they look the way they do. A creative solution for this can be found here.
An inclusive environment cannot be created overnight. Healthcare providers and staff members must start by educating themselves on the challenges faced by people who are blind and learning about how to improve the care they provide for these patients. Healthcare administrators should provide more opportunities for training on these topics. There are certainly structural shifts that need to happen, but change can, and should, start with individuals taking the time to educate themselves and practice inclusive interactions.
What positive or negative experiences have you had in healthcare settings? I’d love to read about them in the comments. As always, if you found my post informative, please like and share!
References:
Heydarian N, Morera O, & Frankowski S, Developing a measure of blind patients’ interactions with their healthcare providers, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2020.100906
Diversely Blind 