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Type of Project:
UX Research + Accessibility

Role:
UX Researcher, Fabricator, Documentation

Equipment
Non-Invasive Ventilation Mask 
Otoform OKC
3D Scanning Equipment

Deliverables
Blog

Our goal with this project is to help provide Marilyn adaptive solutions for   her respiratory mask fit to reach her desired and needed O2 levels.

VIEW BLOG

About Marilyn's Mask

Marilyn sleeps with a NIV (non-invasive ventilation) mask to help with breathing. Marilyn has tried a range of oral-nasal and nasal face masks. She has had persistent issues with fit and leakages and even her current model (mouth seal) equipped with a head strap still fails to support her needs. All of these masks tend to slip upwards along the nose, bruising the bridge and creating air leakages.

Marilyn in her current condition requires a oxygen level of at least 90 to help support her breathing. The slippage issues caused by the current mask models have caused her oxygen levels to consistently fall into the low 80's throughout the night. On occasion she has even had her oxygen levels drop into the low 50's and was required to visit the emergency room. Our goal was to help provide a solution for slippage and in turn help provide her more oxygen throughout the night to get her oxygen levels to be consistently 90 or above.

Image of Marilyn’s Full face mask
Marilyn holding her current CPap mask for breathing. The mask is a frosted white color, almost translucent silicone material.
Image of Marilyn’s Lip Seal Mask
Marilyn's Lip Seal Mask is being held to show what it looks like. It is an oval shaped yellow silicone material with a mouth piece in the middle that is small to provide oxygen.

The Problem

NIV Masks

NIV (non-invasive ventilation) masks are used for breathing support, where air mixed with Oxygen is administered through a mask.  Non-invasive means that it is administered with a mask fit tightly to the face verses intubation where a tube is placed through the mouth into the windpipe. NIV masks are used for all generations with different sizes and models. Here is an educational video about non-invasive ventilation masks.

In the current NIV mask market, masks are produced in a 3 size fits all style. With our research and interviews it has shown that this style of production has caused various difficulties for NIV users and there are a forums that are trying to rapidly prototype custom fit masks in response to this issue. All of our research has been documented on our blog with a  literature review of research papers that we have read.

The current market of NIV users has often shown the best solutions for mask fit issues have come from trial and error discoveries from the user themselves. Various community forums and interviews with practitioners of various fields that use NIV masks have shown how much of an issue this is.

Audience

Who can benefit from this?

PRIMARY USERS

Marilyn with a short gray hair is sitting in her wheelchair on a sidewalk smiling.

Marilyn

This is an icon of a person, it does not specify any gender.

Anyone who uses a ventilation mask

SECONDARY USERS

  • 24hr Care Aides
  • Hospital Nurses
  • Respiratory Therapists
  • Friends
  • Family
  • Occupational Therapists

Research & Assessment

Primary Research

Stakeholders Interviewed

  • Marilyn
  • Marilyn's Care Aide
  • Occupational Therapist
  • Prosthodontist
  • Pediatric Nurse
  • CPAP Store Retailer
  • Scuba Store Retailer

Methodology & Findings

Based off initial research available we planned to use its findings to iterate on a prototype to help find a solution that matched Marilyn's needs. In addition to our prototype we researched C-PAP masks to help identify user issue trends and current adaptations for some of those issues. Our findings showed that individuals who use a ventilation mask lose oxygen due to slack jaw, loose fitting masks, and air blow back.

The initial research provided was materials and documentation on initial adaptations for Marilyn's full-face mask. The prototypes in the initial research were unsuccessful in preventing air leakage. Based on their adaptations we wanted to look for alternative methods in preventing air leakage by looking into mask sealant for scuba gear, 3-D printing and face-scanning, hospital methods for addressing mask fit issues, and speaking with

Nurse Interview

Our goal was to discuss some of the issues nurses experienced with ventilation marks in the pediatric unit and how they went about solving them. The nurses issues resonated some of the earlier points we discovered in our research. According to the nurse, most of the issues they encountered had to do with fit and masks sliding up on their patients face. This commonly led to bruising of the nose and discomfort. The nurse highlighted their adaptive solutions using Mepilex and a Cavilon seal on the skin to prevent bruising and a better fit to prevent air loss.

Prosthodontist Interview

In another interview we spoke with a Prosthodontist from NYU’s Oral Health Center for People with Disabilities. Our hope was to brainstorm and potentially fabricate some kind of prosthetic, mouth guard or custom mask fit for Marilyn. We believed that one of these ideas may be a solution to any potential jaw slack during sleep. Since Marilyn prefers to use her lip seal mask over her full-face mask we wanted to explore alternative options around this model with the Prosthodontist. She mentioned to us that her current lip seal is an older model and is no longer being sold.

As we spoke to the Prosthodontist, he mentioned a Canadian company that does a mouth guard for sleep apnea that would help with any jaw slack Marilyn was experiencing when she sleeps. It would keep her bite engaged just enough without keeping her mouth locked closed so that if she needed help at night, she could still call for an aide. The doctor was able to provide us two different solutions a long term and a short term solution.

Marilyn's Lip Seal Mask is being held to show what it looks like. It is an oval shaped yellow silicone material with a mouth piece in the middle that is small to provide oxygen.

Marilyn's Lip Seal Mask

Short Term Temporary Solution
The Prosthodontist suggested using two sets of orthodontic buttons (1 set on each side, one on the bottom and one on top) that have hooks for rubber bands. Marilyn could have the aides hook the bands (just like the one braces use) on low tension braces and rubber bands to close her bite. The low tension and night time only usage won’t cause teeth to move, but will help keep her bite closed and allow for a more consistent seal. Marilyn, her aide and our advisor all agreed that it seemed like a simple elegant solution for the short term. Marilyn wanted to give it a try and then test out the setup with her respiratory therapist.

Long Term Solution
The Prosthodontist proceeded with an assessment and felt her occlusion was potentially a large factor of potential mask fit issues, especially when using a mouth seal or a nasal only mask, which are the main masks available in the market. He also noted that she may need some potential dental work done and heavily recommended the dental work to be done first (to save Marilyn from paying for a second mouth guard post dental work). However since her levels have been so low (recently in mid 50s one night and had to go to ER) we asked if there were any temporary solutions he could think of until the dental work was done.

Reflection & Our Contribution

Marilyn Saviola passed away during our time working on the project. This was before we could implement our short term solution that was suggested by the Prosthodontist. After she passed we decided to focus our project on developing documentation on creative ways for users to adapt their ventilation mask. The documentation includes various adaptive techniques that can help with common fit issues using a ventilation mask. Those issues include, slack jaw, loose mask fit, strap comfort, and air blow black. Below is a list of the adaptive techniques we suggest for those issues.

Creative Ways to Adapt a Ventilation Mask

Number one

Slack Jaw

  • Custom mouth guard to keep jaw in place
  • Chin Strap
  • Nasal Pillows
  • Mouth Tape
  • Relax face before placing mask
Number 2

Loose Mask Fit

  • Mepilex and Cavilon for nose bridge sores/bruising
  • Mask seal from scuba diving community
  • Custom face strap to go over the mask to hold in place to prevent air leakage
  • Custom 3D scanning for custom fit
Number 3

Strap Comfort

  • Custom Fleece straps that are not easily overstretched
  • Emotional comfort of individualizing the straps through pattern
Number 4

Air Blow Back

  • Custom mouth guard for mouth breathers
  • Nose prongs/ Nose plugs
  • Chin Strap
  • Mouth tape (for nasal masks)

Special Thanks to Marilyn Saviola
Marilyn was Disability Rights Activist and advocate. She was also the Founder of Independence Care System (ICS) Women’s Health Access Program. We are created a Wikipedia page in memory of Marilyn Saviola.

Being able to meet and work with Marilyn was educational and has shed some light on the lack of accessibility in medical equipment. Ventilation masks in particular does not always account for face shape and size, because of this the small, medium, and large methodology may cause fit issues on those users.

VIEW MARILYN'S WIKIPEDIA PAGE