Challenging Stigma

criticaldesigns.jpg

This series of images were produced as part of a larger design project aiming to understand and improve the experiences of long-term tracheostomy users. The images are inspired by quotes from tracheostomy users and aim to illustrate the problems users identified with existing existing products. The photographed prototypes were constructed using familiar colours, textures, and materials to guide observers’ interpretations and make aspects of tracheostomy users’ experiences immediately comprehensible to observers, regardless of their tracheostomy knowledge. By building empathy for tracheostomy users the images aim to provoke change in the way tracheostomy products are designed.

 
 

Project Context

From 2016 to 2017 I worked with a group of designers and researchers from the Design for Health and Wellbeing Lab to understand and improve the experiences of long-term tracheostomy users. The project began when a tracheostomy user with a terminal illness told a surgeon at Auckland Hospital that the one good thing that could come out of their experience would be if someone could improve the tracheostomy tube that had caused them so much to live with so much discomfort and stigma. The design and research team conducted in-depth interviews and co-design workshops with long-term tracheostomy users to capture their experiences and find opportunities to improve them through design. My role was to explore the problems and benefits of existing tracheostomy products and to design a product solution that reflected tracheostomy users' needs and desires.

 
Netter, F. H. (1975). Tracheotomy surgery illustrations. The CIBA Collection of Medical Illustrations: Respiratory system: Elsevier Science Health Science div.

Netter, F. H. (1975). Tracheotomy surgery illustrations. The CIBA Collection of Medical Illustrations: Respiratory system: Elsevier Science Health Science div.

 

What is a Tracheostomy?

A tracheostomy is a kind of breathing tube used by people who can’t breathe through their nose and mouth. They might have a tumour blocking their airway, some kind of neck injury, vocal cord paralysis or any number of other conditions. To bypass whatever problems are blocking the upper airway, the tracheostomy tube is inserted directly into the trachea (or windpipe) through a hole cut in the person’s neck. Some people only need a tracheostomy tube for a couple of weeks while others may need one for months, years, decades, or a lifetime.

 
 
A new tracheotome. (1878).   The American Armamentarium Chirugicum. Washington : Health Science Libraries.

A new tracheotome. (1878).  The American Armamentarium Chirugicum. Washington: Health Science Libraries.

Premier Dental Products Co. Modern silver ‘Jackson’ tracheostomy tube. https://tri-anim.com/tracheostomy-tubes-jackson-original- group-34121-3792.aspx?search=717-1034615.

Premier Dental Products Co. Modern silver ‘Jackson’ tracheostomy tube. https://tri-anim.com/tracheostomy-tubes-jackson-original- group-34121-3792.aspx?search=717-1034615.

 
 

Historical Perspective

The above comparison between a tracheostomy tube from the 1870s and a modern design show just how little tracheostomy tubes have changed in the last 140 years. Where other prosthetic legs have gone from basic wooden peg legs to carbon fibre running blades over a similar period of time, tracheostomy tubes have remained virtually identical. 

 
existing problems.jpg
 

If it Ain't Broke Why Fix it?

So why haven’t tracheostomy designs changed in over a hundred years? Certainly not because they’re already perfect. In fact, wearing a tracheostomy tube can have significant negative impacts on a user’s life, particularly for those living with long-term or permanent tracheostomy. As you might imagine, having a foreign object protruding from a hole in your throat is physically uncomfortable. The tube and strap used to hold it in place rub against the skin causing irritation, which can be worsened by the secretion of mucus (another unpleasant a side-effect of having a hole in your throat). Maintaining the cleanliness of the tracheostomy is an ongoing concern for users, particularly since their ability to breathe (and therefore survive) depends on the tube remaining clear of blockages.

Tracheostomy tubes also alter users’ appearances in ways that can cause internal shame and attract external stigma. People with appearances that don’t match cultural ‘beauty’ ideals are more likely to struggle with forming social and romantic relationships, receive fewer offers of help from others, and are less likely to be successful job applicants. Some tracheostomy users protect themselves from stigma by covering their tracheostomy tube with a scarf or bandana but this can prevent them from adjusting to and accepting their altered appearance. Furthermore, covering the visible signs of the tracheostomy tube does nothing to hide their voices which are weakened and altered by the tracheostomy tube.

 
modifications.jpg
 

Taking Matters into Their Own Hands

These problems affect tracheostomy users to such a degree that some take matters into their own hands and modify their tracheostomy products. Here are some reconstructions of some of the adaptations tracheostomy users have made. They make their tracheostomies more discreet by painting them to match their skin tone or trimming down the piece that protrudes from the front. And they make them more comfortable and durable by replacing single-use straps with elasticated bra straps or custom fitted silver chains. If users are expending time, effort, and money to adapt their tracheostomies just so they can reach a basic level of comfort, then clearly existing products are failing them in a big way.

So Why the Stagnation?

The trouble is that little has been done to understand what it’s like to live with a tracheostomy tube. Because they are medical products, tracheostomy tubes are purchased by hospitals rather than users themselves. This results in a strong drive for manufacturers to focus on things like cost and clinical functionality over things like comfort, usability and aesthetics. These aspects of the design may not be essential to keeping users alive but they make a huge difference to people’s daily lives. Another factor inhibiting change is that it’s incredibly difficult to find out how many people tracheostomy affects. It’s usually just part of the treatment for an array of other conditions so there isn’t a lot of data available that looks at tracheostomy specifically. What research there is, usually focusses on acute care in the hospital setting rather than the experience of managing a tracheostomy at home.

 
 

Project Aims

In light of the long term stagnation in tracheostomy design and clear neglect for the needs of long-term tracheostomy users I wanted to:

  1. Understand what it's like to live with a long-term tracheostomy tube.
  2. Give users a voice in the conversation surrounding the products designed for their use.
  3. Propose a design solution that would address the latent needs of tracheostomy users without compromising clinical function.
 
 

Co-Designing with Tracheostomy Users

To address these aims I invited a small group of long-term tracheostomy users into the design process to participate in co-design workshops. I held two workshops with a total of five tracheostomy users and two of their family members. Participants had had their tracheostomies for between 1 and over 25 years and ranged in age from 25-75. During the workshops, my role was to facilitate discussion and generative thinking. Each workshop was an hour long and consisted of two creative activities.

 
brainstorm.jpg
 

For the first activity I asked participants to brainstorm ideas for how they would like to see tracheostomy products improved.

 
codesignprototypes.jpg
 

For the second activity I asked them to mix and match a range of prototyped tracheostomy components to create their own designs and discuss the reasons behind their choices.

Co-Design Insights

The value that came from these activities wasn’t necessarily in the physical outputs or the brainstormed ideas but rather the conversations they facilitated. The power of the prototypes was in bringing people together and giving them the opportunity to talk. From the discussions that took place during the workshops, we were able to identify four key themes to describe users’ experiences.

 
 

Eagerness to Share

Participants came into the workshops bursting with a desire to help make things better for others like them. They had given a lot of thought to the daily challenges they face, and one participant even said she had “been waiting for this for years.” Another showed up with a file of his own notes and a bag full of tracheostomy products to demonstrate for us. He hadn’t been asked to bring anything. He was just so passionate about driving forward change that he’d been compiling materials for years. Participants were also quick to trade anecdotes with each other. Most had never met anyone else with a tracheostomy, so the opportunity to participate alongside people who could relate to their experiences seemed to be hugely cathartic.

Isolation

Most participants talked about adjusting to their tracheostomies as an isolating experience. They knew little to nothing about tracheostomy before they had one, and nearly all felt they had received inadequate support from clinicians while adjusting to life after the surgery. One lady told the story of the first time a district nurse came to help her change her tracheostomy at home. The nurse had never seen one before and was more frightened of changing it than the woman herself. 

Participants’ sense of loneliness was made worse by insecurities about their appearances and the lengthy process of learning to speak again with a tracheostomy. One woman’s husband took a break from their marriage when the burden of watching people treat her differently became too much. Another recalled having to use a code of knocks (once for yes, twice for no) to communicate with family over the phone until she regained her voice.

Resistance to Change

Interestingly, despite their obvious frustration with the current state of tracheostomy products, participants were also resistant to change. During the mix and match activity they met prototyped concepts with a strong dose of scepticism. Participants said things like “You get used to it,” and “I’d rather it just look like a trachy.” This was interesting given most had eagerly attended the workshops specifically because they wanted things to change. It seemed that participants were so used to making do with what they’d been given that they’d started to accept it as their lot in life. They knew they didn’t like things the way they were but struggled to imagine anything different.

Identity

Their resistance to change also seemed to stem from a fear of being defined by their tracheostomies. They felt they were ‘who they were’ in spite of – not because of – their tracheostomies. For all their flaws, existing designs fit their preconceived ideas about medical products. This allowed them to see their tracheostomy tube as something imposed on them by medical necessity rather than a part of themselves. In their eyes, making tracheostomies more attractive would risk making them objects that could be used to express identity rather than simply preserve life.

But regardless of their fears, the stories participants told during the workshops made it clear that having a tracheostomy had shaped their identities. The surgery itself was a significant life event. Learning to speak again, deal with rude comments from strangers, and generally adapt to their new lives had made participants more resilient, confident, and outspoken. Tracheostomy had even coloured their humour. One participant repeatedly joked that when vocal cord transplants are invented... she’s having Michael Jackson’s. They were proud of the challenges they had overcome. And perhaps the appearance of their tracheostomy tubes had become a symbol of this pride leaving them resistant to seeing it change.

Product Choice

Participants also expressed contradictory opinions about product choice. One participant complained about the lack of choice for tracheostomy users in comparison to people with prosthetic limbs but later said “If they make a good choice, people won’t need to choose.” While her attitude seemed strange, another participant made a comment that went some way to explaining the contradiction: “I think practically, and because of the cost implications, you probably need to have a lot less choice. I think the concern is that it needs to be cheap.” Although participants were desperate for choice and change, they were so used to running up against systemic roadblocks like cost that the kinds of change they could imagine were severely limited. 

Capturing Insights

Having gained a better understanding of what it's like to live with a tracheostomy tube, I wanted to find a meaningful way of capturing users' experiences. To do this I produced artefacts that would highlight some of the key problems users face with existing designs and encourage question  the ideologies behind existing tracheostomy products. Using what I had learnt from the co-design workshops, I produced five prototypes. Each one is based on a quote from one of the workshop participants and aims to capture a different aspect of their experiences. 

 
hivis.jpg
 
It sticks out like a sore toe.
— 55-year-old female, 24 years with tracheostomy

This prototype uses the visual language of a hi-vis vest to emphasise the idea that tracheostomy tubes draw stigmatising reactions and unwanted attention. It aims to help observers imagine how it would feel to wear something that makes them feel like everyone is staring.

 
fluffy.jpg
 
Any tracheostomy has difficult places to clean.
— 60-year-old male, 1 year with tracheostomy
 
 

A layperson looking at a tracheostomy tube may not be aware of how difficult they can be to clean. Crevices in plastic or metal components can build up with mucus secretions, and fabric straps quickly become soiled with sweat, make-up residue, and secretions. This prototype uses a strap made from white faux fur, smudged with graphite to capture this aspect of tracheostomy users’ experiences.

 
padlock.jpg
 
If you’re doing it yourself, you’ve got to find the end and if you’ve got sight issues, it’s quite hard.
— 60-year-old male, 1 year with tracheostomy
 
 

While the velcro fastenings on existing tracheostomy straps seem simple to use, in practice it can be difficult to thread the velcro through the holes in the tracheostomy tube, especially on one’s own neck. The challenge is even greater for users with arthritis or impaired vision. By using padlocks to fasten the strap, this prototype makes the idea that tracheostomy tubes are difficult to attach immediately visible. 

 
sandpaper.jpg
 
You know when your bra strap is too tight and you get those dents? That’s what happens.
— 55-year-old female, 24 years with tracheostomy
 
 

The discomfort of wearing a tracheostomy tube is particularly invisible to observers as it is difficult to imagine the physical sensation of a foreign body sitting inside your trachea, or the irritation of the strap and front piece rubbing against your neck. Existing straps may look soft and comfortable, however, their constant presence combined with sweat and secretions can cause significant discomfort. This prototype uses coarse sandpaper to prompt observers to imagine tracheostomy users’ discomfort.

 
paper.jpg
 
If they made decent ones we wouldn’t need to replace them. We can’t wash them, they fall to pieces and stick to everything else in the washing machine.
— 55-year-old female, 24 years with tracheostomy
 
 

This prototype uses paper to create a visual analogy to the familiar experience of accidentally putting paper through the wash. While few people know what it’s like to live with a tracheostomy, most people have opened the washing machine to find bits of soggy paper clinging to all their clothes. This image invites observers to imagine how much more frustrating it would be to have an object vital to keeping them alive fall apart so easily.

 
tracheideas.jpg
 

Ideation

To develop a design solution that addressed tracheostomy users unmet needs I began sketching and brainstorming ideas for improving the issues identified during the co-design workshops. I took a brad approach exploring ideas for improving the aesthetics, and usability of tracheostomy tubes.

 
trachesketches.jpg
 

Development

As the project progressed I began to develop the design through iterative prototyping, experimenting with scale, form, and attachment methods in response to feedback from co-design participants. The design was gradually refined into a working prototype that consolidates users needs into a cohesive design.

 
IMGP7504 copy.jpg
IMGP7496 copy.jpg
IMGP7493 copy.jpg
IMGP7497 copy.jpg
IMGP7501 copy.jpg
IMGP7499 copy.jpg
IMGP7505 copy.jpg
IMGP7503 copy.jpg
 

Coming Soon...

The full range of development work and final prototype are not shown here because I am currently working with Auckland District Health Board to patent the design and further develop it with tracheostomy users. 

 
comingsoon.jpg