Supporting the carers of patients with Autonomic Dysreflexia

Individuals with spinal injury often suffer from nerve damage which limits their ability to regulate body temperate, increases their risk of high blood pressure, and can lead to heart attack and stroke. These symptoms are the consequence of a condition called Autonomic Dysreflexia (AD).

Completed as a side project at IBM.

Dan

Software Engineer

Grace

Software Engineer

Andy

UX Designer

Myself

UX Researcher

Problem

Autonomic Dysreflexia (AD) is complex for two reasons:

1) it’s a rare condition with very little medical research. Longitudinal data sets are needed to support care recommendations.

2) AD emerges very differently across patients groups. New carers need to understand the complexities of the condition quickly, and adapt their care according to the environment around them and the patient’s current health.

Outcome

My team designed and built an application which would help new carers prevent AD from occurring for patients with spinal injury. Carers record patient observations in the app, observe trends towards episodes of AD and receive recommendations for quick and effective care.

Objectives

1

To help new carers recognise the signs of a developing AD episode, and equip them with the knowledge to react safely and accordingly.

2

To significantly improve the data medical professionals have on AD with the goal of supporting research and improving care outcomes.

3

Raise awareness of AD in the medical community, and equip doctors with the information needed react in an emergency.

Personas

The experienced parent

The new carer

The hungry researcher

The experienced parent

Emma works as a part-time physiotherapist and has three children who are 15, 13 and two. Her youngest, Harvey, has had intermittent episodes of AD since developing a cyst on his spine which left him paralyzed from the waist down.

Challenges

Emma is constantly vigilant for signs of AD and has little time to relax.
Training new carers takes a long time due to the complexity of the condition. Several have worked with the family over the past year but none have stayed longer than 3 months.
Emma spends much of her time coaching carers and designing paper resources to ensure the safe handover of care.

The new carer

Tobi has worked as an agency healthcare assistant for 15 years. He has looked after patients with a variety of challenges, including those with brain injury and sufferers of stroke. Day to day tasks for Tobi include helping patients get washed and dressed, taking regular observations of blood pressure and heart rate, and ensuring patients have medical and practical assistance when needed.

Challenges

Tobi is used to recording patient observations like blood pressure and blood sugar, but has no formal medical training.
He’s never worked with someone who has AD and needs to quickly up-skill in order to offer preventative care.

The hungry researcher

Dr Mead is the Rehabilitation Medical Director at a specialist hospital for spinal injuries. She works most closely with physiotherapists, nurses and academic researchers.

Challenges

The hardest part of her job is educating patients and families on the signs and symptoms of AD.
Very little is known about the condition, in particular the varying signs and symptoms of AD across patient groups and contextual and environmental triggers.

Generative interviews

Starting the project, I initially reached out to one doctor and one physiotherapist from a specialist hospital for spinal injuries. The goal was to identify commonly experienced care challenges. The interviews focused on:

the reported day to day challenges for new carers of patients with AD
symptom recognition and proactive steps carers should take
the needs and interests of clinicians when it came to clinical research.

Based in the US and with busy schedules, structured interviews helped my team get quick answers to complex care questions.

Design thinking workshop

Having learnt about the problem space and equipped with more targeted questions, I ran a workshop with a team of developers and with the family of a patient with AD.

Scenario mapping revealed the unpredictability of this condition and the need for carers to stay constantly vigilant for a trend towards AD (even throughout the night). It also gave us a reality check on complexity of caring for someone with AD. For example, many of the typical indications of illness aren’t apparent for patients with AD, such as sweating when hot.

This session helped our team identify the need for an IoT solution very quickly.

Contextual Inquiry

During the workshop, I noticed it was hard for the family to recall their precise sequences of care. Reactive measures (or preventative care) are dependent on environmental triggers around the patient. I ran a contextual inquiry with the UX designer in my team to capture the knowledge of a very experienced carer.

The idea was to equip new carers with the same knowledge and guidance as an experienced parent. I wanted to identify affordances by focusing on three types of needs.

Individual needs

What knowledge and habits have been acquired, only after years of care experience, in order to complete that step?

Social needs

What do the parents rely on others for to complete this step?

Contextual needs

What do the parents need in place around them, including resources or apparatus, when completing this step?

By using this method, I identified mistakes which new carers made and experienced parents didn’t. However, I was surprised to learn that the parents didn’t spoon feed the carers during their AD education. Carers should be able to use logic and reason to identify developing signs of AD, instead relying on an application to indicate a spiral of events.

Competitive Analysis

After the contextual inquiry, our strategy changed from offering specific guidance to carers based on environmental triggers, to equipping carers with the information they would need to practice AD care independently. I reviewed several applications which were designed to support carers in this way to understand successful features.

In the process, I found that nothing exists on the market for carers of patients with AD. This validated the exciting opportunity to help carers and clinicians learn about the triggers of AD.

By evaluating successful products like VitalPac, we were also inspired by the opportunity for our app to identify Early Warning Signs for AD.

Wireframes and Usability Testing

Sketching has always helped me communicate insights and design requirements, and provided the opportunity to spar with teammates about how information should be presented. I worked with a UX designer throughout each stage of research until we created a set of wireframes for the parent and carer side of the app.

Usability testing is currently in progress with carers and parents of other children with Autonomic Dysreflexia.

Impact and Results

This app was the first of its kind

to offer tailored care support and notifications based on observed trends towards AD,
to raise awareness of AD by outputting condition relevant information for doctors and carers to easily consume.

It led to

on-going conversations with the specialist hospital for spinal injury in Philadelphia around investment,
interest from several other hospitals in the UK due to our ability to collect data and run research on this rare condition.

Upon reflection

my biggest inhibitor was gaining access to carers of patients with this rare condition. Many opportunities for research were cancelled due to patient illness.
In the future, if time wasn’t an issue, I’d reach out directly to the care agencies and gain ethical approval to observe carers in-situ. This would take longer, but lead to more varied results in the long term.