I need [x] so that [y]

  • Rob Sloan

This is the third instalment of my series of blogs on our user need research project, y tho?

I’ll be writing about –

* The process of the project so far including:

– a quick recap of the theory around the development of personality
– the journey of someone diagnosed with Multiple Sclerosis
– the process of grief

* The needs of someone as they go through life with MS (if you’ve been following the blogs, this is a new bit!).

With the new year upon us and the shapes of future Shift.ms projects forming on the horizon, it’s more pressing than ever to address our understanding of user need. Before diving into the next phase of the project I thought it would be worth doing a lightening recap of where I’ve got to so far, so here goes…

1. Personal development

I started the project by looking at some basic principles of psychology – what was the theory out there about the development of personality and identity? A key reference for this stage of the process was Erik Erikson, the coiner of the identity crisis.

Erikson’s Psychosocial model tracks the development of the human psyche since birth…frankly I could have spent two months concentrating on this! It was really interesting.

BUT I quickly started getting a sense of the scale of this area, and being an expert in psychology is not my endgame…rather than getting bogged down in every bit of psychological theory that had ever been drummed up, I needed to be strict with my time and get just enough out of it to feed into the next section of work.

To point myself in the right direction again I went back to why I was looking at the topic in the first place: I was interested in where a diagnosis of MS sits in the development of personality and identity.

With this in mind I grabbed what I needed and moved on.

2. The MS journey

Next I looked into the current theory around the journey of someone diagnosed with MS. I looked at the three main types of the condition, the average ages of diagnosis, average relapse rates, typical symptoms experienced,…etc. etc.

The diagram above is a summary of what I discovered. Two key learnings:

– Secondary Progressive MS and Primary Progressive MS could be the same disease (MS Trust) and diagnosis of both happen around the same average age.
– Relapsing Remitting MS is under contention as a phrase, arguably the disease is never in remission, it is always active.

3. The MS journey mapped against personal development

The third stage was to map the MSer journey against Erikson’s model, seen in the image above.

Here I learnt that a diagnosis with Relapsing Remitting MS (RRMS) could happen immediately after someone has formed their identity in their late teens, leading to the risk of an identity crisis around diagnosis.

The average age of diagnosis of RRMS is also slap bang in the middle of a time when we’re looking to form loving and honest and long term relationships with those around us…if that doesn’t happen (and a diagnosis of a long term health condition could complicate this), the result is an increased risk of isolation.

4. The elements of grief

Next, I read about the elements of grief that are often experienced after a trauma…


…these could happen simultaneously, one at a time, in no particular order, again and again in cyclical manner, over a week, a decade, a lifetime…it’s different for everyone.

Something interesting here is that while our target audience is people recently diagnosed with MS, it might be that after experiencing a diagnosis, people could be in a state of denial and not be ready to use a service like Shift.ms.

5. MSer questions and concerns

Next I drew on some of our previous research to pull out the questions and concerns that MSers might have on their journey…again these could happen at any time and the order is not intended to be prescriptive, but I wanted to give myself a framework to start building up our user needs.

I then wanted to see this in the context of personal development so brought everything together in one diagram.

6. MSer needs

After building my framework I started looking at user needs. A bit of research into best practice was needed here and I found some really useful resources on gov.uk.

They have a practice that if they ever want to build anything, a user need has to be presented first (I liked this a lot!) and they have a really simple framework to do so:

As a… [which type of user has this need?]
I need/want/expect to… [what does the user want to do?]
So that… [why does the user want to do this?]

With this methodology I started writing a set of user needs, again drawing on the work we’d done previously and research carried out for this project.

These are a few of the needs that stood out:

As a person who hasn’t been diagnosed
I need to communicate what I’m experiencing
So that I can be treated

As a person diagnosed with MS
I need to grieve
So that I’m ready to listen / learn

As a person living with MS
I need to be honest about my MS
So that I’m on the right treatment

As a person who’s MS is impacting their life
I need examples of how other people have adjusted
So that I can adjust myself

I’m predicting that this list of user needs will evolve as the project continues…I’m going to be stripping out the irrelevant stuff and adding bits I’ve missed…I’ve just ordered a big print of it to sit opposite my desk, so it’s going to be right in my face for the next few weeks…

So that’s an overview of the project so far. I’ve tried to keep it to the really meaty bits, I’m starting to sit on a mountain of work! Next, I’ll be looking at Peer to Peer support, the web of support and care as it currently stands, and where Shift.ms sits within that. I’m also starting to think about taking this work to a set of users and relevant professionals…a focus group is on the horizon.

Until next time.

If you missed the earlier blogs and want to get fully up to date:

First read this.

Then this.

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