How to Communicate with People Who are Blind or Vision Impaired
Part 3: Medical Care and Support
Monday October 26, 2020
Most children with retinoblastoma and survivors have some degree of sight loss, and many experience awkward healthcare interactions as a result. This 3-part series shares survivor and parent tips for medical professionals working with people who are blind or vision impaired, Part 3 focuses on medical care and support
This is the final instalment in a three-part series sharing guidance and insights to aid effective communication with people who are blind or vision impaired.
WE C Hope child life specialist, Morgan Livingstone, and her former intern, Jocelyn, gave a series of talks earlier this year about communication between medical professionals and patients, parents, colleagues and students who have sight loss. Jocelyn has lived with low vision since childhood, and Morgan asked our retinoblastoma community for insights to deepen her understanding, particularly of issues specific to retinoblastoma care.
Over three posts, we have shared the vast range of responses from parents and survivors. In this series, you can find:
- General Meeting and Interaction
- Offering Assistance, Access and Technology
- Medical Care and Support (below)
We hope you find this detailed advice and insight very valuable as you continue to bring the best care to your patients and their families, and work together with us to advance care.
DO ask your patients how they want to receive their medical records, treatment protocols and other information materials. Options include:
- Large print – at least 18-point true type font such as Arial or Calibri.
- By email – check what file format is best for the individual. Understand how to create accessible documents, and ensure the content is screenreader and high contrast accessible, especially that all images include descriptive alt text.
- Audio – a digital file can be provided by email or given on a thumb drive/CD.
If necessary, ask the IT or accessibility department at your institution for assistance. Providing medical materials in accessible format is a legal requirement in many countries, and hospitals should have processes in place to support patients and professionals to ensure this is done well. The ability to access one’s own health information independently protects the individual’s privacy and their right to manage their personal data.
Discuss with your patient a practical system for marking medications, and ensure that the patient or your team sets this up with the pharmacist. Options include:
- Place two rubber bands or stickers on a box of tablets to be taken twice daily.
- Mark the package with Tactimark or a similar ink-pen that becomes tactile when dry – this reduces the risk of error if indicators such as rubber bands or stickers are lost.
- Braille the instruction label – don’t assume a blind or vision impaired patient/parent reads braille as many do not.
- Assist the individual to access training in confident use of an app such as SeeingAI to read the label. Recognise that such an app can be time-consuming as it requires the phone’s camera to fully focus on the label. When medication must be administered quickly, this may not be practical.
- Advocate for the individual to secure grant funds for an audio labeller/reader.
- Encourage the individual to develop an organised storage system at home to help locate different medications easily. This should not be the only method of identification, as medication can be relocated, even with careful attention.
DON’T leave out visual information from medical consultations or from your descriptions of rooms or objects because you think the person can’t use it.
If you would show and describe imaging scans, photographs or anatomic drawings to a sighted parent or patient, then also describe them to the individual with sight loss. By doing so, you ensure you give them the same level of information as any other person receives, and you also indicate the presence of this information in the medical record. The person can advocate in the future by asking that images or drawings from different dates be compared.
When describing a medical doll that a blind parent can use in play with their sighted child, include descriptors such as “she has a red dress and blue shoes”. The parent may remember that information and use it to help build up the child’s colour awareness and expand the play experience beyond the specifically medical focus. When describing a procedure room, mention the seascape mural on the wall – the parent can use that information to help distract their child while waiting for procedures.
“I’ve had medical professionals gesture to something in the room like I should be able to see it, or they will show something like a picture to the people I am there with and not offer me an explanation. It takes just a moment to say something like “This is a picture of your retina. It’s showing a healthy pink where we re-attached it during the surgery.”
What visual information could you give a blind parent about this oncology clinic area to help them distract and entertain their child, and support natural child development and learning during their visit? (Credit: KKT Architects)
DO tell the individual what procedure you are about to do, and let them handle the equipment first if possible. Explain each action you are going to do, to which body part, and specifically whether to the left or right eye or limb. Explain noises and silences, and do not shout.
If you are treating the child of a vision impaired parent, ask the parent ahead of time how they and their child would like the steps of the procedure described, and by whom, to best support coping for both parent and child. Using ONE VOICE with particular attention to the parent’s needs as well as the child is especially valuable in this situation.
DON’T be impatient. Show compassion, and work with the individual to accommodate their needs for a successful discussion or procedure. To you, this may be a simple, everyday process, but your patient or their parent may view the experience very differently. After years of difficult discussions and invasive procedures, especially if diagnosed with retinoblastoma in early childhood, every simple medical interaction may be a traumatic experience. The passage of time does not on its own reduce that fear and anxiety, but how you listen to and care for the individual can make a difference.
“Coping with the trauma of treatments is still difficult. I had surgery a few months ago and was still kind of “with it” when they tried to put the oxygen mask on me. I instantly freaked out and pulled it off. The smell, the air, the constriction of the mask – instantly took me back to being a kid on a cold table in an exam room, about to have anaesthesia to get my eyes checked. Not fun.”
DO have a good degree of empathy! Imagine you are in a hospital setting: entirely dependent, receiving bed baths, wearing a revealing hospital gown that shows your butt. Explain everything to patients and parents, no matter their age, but don’t patronize in the process. There is a tendency to assume blind or vision impaired people are stupid or unable to communicate for themselves. We should never be talked down to, regardless of age, ability or impairment.
DON’T ask the individual to cover their prosthetic eye when testing vision, or to try reading with that eye. By giving that simple instruction, you demonstrate that you haven’t invested enough time to be aware of their basic cancer history. While the surgery is routine for ophthalmologists, it is a major intervention for parents and children, and it may still be a hugely sensitive experience, even decades later, even if the individual has full sight in the remaining eye. Do not assume that time has healed.
Take time to read your patient’s medical notes, and if you don’t have time, listen to the patient. If they tell you they have a prosthetic eye, don’t cause further insult by asking them to confirm this by removing the eye or covering the sighted eye for vision testing. Both are appallingly common experiences.
DO always read aloud to the individual what you write in their medical record. Sighted patients and parents can read this document and highlight any errors. Blind and vision impaired individuals cannot. So please read aloud as you write, and respect the individual’s right to raise a point for query, discussion or correction.
DON’T assume a blind or vision impaired parent or patient can’t manage medical care independently. If If the individual will need to do procedures at home, let them perform each step in the process until they are confident. Coach them through the procedure and let them help you figure out any adaptations, if necessary. A little extra time and patience may be needed, but it will save everyone a lot of stress in the long-run.
DO always explain things to young blind or vision impaired patients. You can’t be sure that parents will educate children and adolescents about their cancer and lifelong risks, or that the information they share will be factually correct or complete. Engaging patients and survivors from a young age helps us understand our cancer experience and treatment history, and encourages us to be confident, responsible advocates for our own healthcare throughout life.
“Many times, until I was an adult and going to appointments on my own, my doctors would speak to my parents, never giving me any explanation of anything.”
DON’T Tell your patient they shouldn’t have children because they had retinoblastoma. Being a parent is a personal choice, regardless of medical condition or disability. Your role as a medical professional is to present the facts and risks specific to the individual’s genetic situation, or refer your patient to a genetic counsellor who is informed about retinoblastoma genetics, then step back.
If you are not discussing retinoblastoma genetics, and the patient does not seek your guidance on family planning, do not comment. Family planning decisions are the right and responsibility of the individual and couple, not the medical team, nor the relatives or friends of the survivor or their partner. Sharing opinion, especially before the individual has come to terms with the implications of RB1 mutation, can cause tremendous psychological harm.
“It is hard for some to understand the feelings surrounding parenthood, and what I believe is a natural instinct for many women. During a work physical, upon hearing I was an RB survivor, the doctor told me “you know you shouldn’t have children”. He had just met me and knew nothing about my history. This was an adolescent mental health facility where he worked as the house-pediatrician and doctor for the staff To this day, I remember the feelings of shock, hurt, anger!
Being able to give birth was a feat of strength after thinking it may not be possible. I was so angry that doctor told me I should refrain from having children. Who was he to make that judgment!? He overstepped his boundaries and was very insensitive.”
“I knew the Rb risk but still I had children because my passion for family overcame all. One day after another relapse meaning more chemo, I sat in the consultation room waiting for you. I heard you speak in the hall with the fellow, your words burn in my mind: ‘well, they chose to have kids, so on their conscience be it’.”
What gives you the right to judge or speak of us like that? I could never tell you I heard, but it changed our dynamic totally and I am still outraged years later. You need to know how destructive your words have been.”
DON’T limit your patients with sight loss. Don’t make assumptions about what we can or cannot do, based on your experience, opinion, imagination or fears. You do not live their life. So much of a person’s capability is about perspective, attitude, access and adaptation. As a medical professional, your attitude can influence the child’s life experience for decades. Learn about the rehabilitation and support resources available to which you can signpost for more support, and be an encouraging cheerleader.
“I have bilateral form and yet still have enough vision with corrective lenses to read, write, see, drive, everything a person with normal vision can do.”
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“People who are blind and vision impaired are business owners, executives, politicians, lawyers, journalists, Paralympic athletes, musicians, teachers, nurses, doctors, scientists, authors, visual artists, charity managers, parents, world travellers, tech developers, web designers – the list goes on. We can do so many things… We are a diverse group of unique individuals. We are all human, with the same right to discover our own potential and find our own path in life, without others deciding for us.”
Brian, a bilateral Rb survivor, flies himself to his own ocularist appointment.
DO acknowledge that your patient may need adaptive living. Be clear but discreet, respecting that this is often difficult for both parents and adult survivors to hear. Signpost to rehabilitation and support organizations in your area that can help, and follow up to check that the family or individual has been able to access appropriate support.
If your team benefits from a social worker, find out what they can offer the family / patient in this area, so you can give clear, appropriate information. Vision impaired parents especially in some countries may be wary of connecting with a social worker in the medical setting due to previous instances in which medical professionals have attempted to have children removed from their disabled parents – simply because the parent is disabled. Patience, clarity, and trust will be vital.
“I learned about an equipment loan service from another parent that was run through the hospital’s social work office. I wish I’d known about it sooner because it solved so many problems for us. But I didn’t see the pamphlets and to be honest I was wary of going to the office as a single mom with low vision and a kid on chemo. I wish our doctor or nurse had said ‘this is the person’s name and this is what they are about and what they can do’. I’d probably have still been wary, but I would have been more informed and could have asked other parents sooner about it.”
* * *
“I can’t see well far away or if the lighting is too dim. At work, I struggle with fluorescent lights for long periods, night time driving is sometimes difficult and having someone who knows about these things to offer help in situations like those is nice.”
DON’T assume that all parents (sighted or otherwise) will take action to put in place the supports their children need, or that other individuals such as social workers, organizations or agencies are involved. Regularly ask all parents of blind/ vision impaired children what supports are in place for the child (ask what specifically is in place rather than if supports are in place), and ask the child directly what they think they need.
Saving a child’s life, and possibly some of their sight, becomes a hollow victory if that child is unable to fully participate in life because appropriate adaptations and supports are not put in place. As the key medical professional, you are the one consistent, frequent contact of influence in the early years – continue to be the child’s advocate on their road to rehabilitation.
“I wish health care providers took the time to discover what we struggle with, and find ways to help. I wish they made sure that parents follow through with things that will help children cope in school and in the real world.”
I thought what I saw and did was that way because I adapted to my decreased vision. I knew nothing different. My parents never changed anything or adapted to me, I just existed in an able bodied world. I remember my mom telling my teachers at the beginning of each year ‘she had cancer, she’s blind in her right eye with vision loss in her left, let her sit up front’, and that was it.
My senior year, I made a 504 plan just so it could roll over to college in case I needed it. We had to meet all my teachers in this big conference and they said ‘I didn’t know this is what you deal with’, ‘we didn’t know you struggled’, etc. I could only reply that this is how it has always been – I just thought I had to deal with it.”
One young Rb survivor introduces another to braille reading and writing.
DO offer psychological support early to your blind and vision impaired patients. Also ensure survivors are connected into a long term survivorship program that includes mental health care support, or signpost them to appropriate psychological support – and follow through to confirm they are able to access that care. While published research to date indicates that psychological impacts from retinoblastoma are minimal, discussions among survivors presents a very different picture.
Many survivors find it very difficult to verbalise their experiences and concerns in a brief meeting. The person’s concern about social stigmas or discriminatory beliefs may prevent them from speaking honestly. Please offer your patient or their family signposts to appropriate support, even if you think they are coping well.
“Being a kid with Rb was really unpleasant. Other kids were awful and I missed out on the opportunity to develop a healthy level of confidence until I was older because of it. Therapy at an early age would have been great.”
* * *
“My teen and I are Rb survivors. Our doctor always asked me how I was when we talked after my son’s EUAs, and every time I’d say I was fine. I felt that as a blind parent, I had to work harder to prove I was capable, but being stoic at the hospital took its toll because I wanted the luxury of breaking down like other parents did.
But I was afraid that people would think of me as the blind mother who couldn’t cope. I was so scared someone would call child services one day, just because I was having normal cancer-mom emotions – that’s happened to other disabled parents and I swore it wouldn’t happen to me. So I held it together, and I broke apart when the door was closed and not even my husband could see. I learned to push things down. It’s taken years of therapy to undo all that.”
DO apologise if an interaction goes badly, and ask the individual how you can help to make the next one go better. This almost certainly won’t be the person’s first or last awkward experience arising from their sight loss. We are all different and there is no one cookie-cutter response that fits every scenario. We value conversation, the opportunity to tell and show you what works best for us as individuals. Together, we can help smooth the path for others who will come this way after us.
Parents, survivors and professionals work together in a breakout session at One Retinoblastoma World 2017 in Washington D.C.