App helps understand schizophrenia

SARAH DUNN
Last updated 12:58 13/03/2014
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MARION VAN DIJK/FAIRFAX NZ
HEARING VOICES: Anne Mokhtar with her daughter Sarah Mokhtar who has invented a device that simulates a schizophrenic experience.

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A Nelson graduate student has created a device which will allow the families of people with schizophrenia a glimpse of the overwhelming world their loved ones live in.

Former Nelson College for Girls student Sarah Mokhtar, 24, is studying at Victoria University towards a Masters degree in design innovation. Interested in creating products and industrial design, Sarah has spent the last year working on a programme called "empathear" that works through a downloadable app and a "wearable technology" scarf. Wearing these items will let those close to people who hear voices in their heads understand what the experience is like.

She said her inspiration for empathear grew out of the years she spent growing up in Wakefield alongside her older sister, who has struggled with schizophrenia. Among the services offered when her sister was first diagnosed was a "hearing voices" workshop that the whole family did together 10 years ago.

Ms Mokhtar said the workshop involved listening to voices on a looped tape that were meant to simulate those heard by people with schizophrenia. She set out to create an extension of that workshop, using the tape's script to make new devices that could be taken outside and worn in everyday environments for a more accurate experience of a schizophrenic person's life.

The voices played by the app are looped, but the scarf changes the tracks it plays based on the environment around it. The empathear programme behind both devices was developed in collaboration with fellow graduate student and "tech genius" Tiago Rorke, who is now based in London.

"I did a lot of research around psychology, ethics, and what kind of groups this would be useful for," Ms Mokhtar said. "Ultimately, [my goal is to] change the quality of life for the whole family unit."

She said her sister had told her that empathear's recorded voices were not very similar to those she heard as her own were "happy" and less aggressive. Due to ethical constraints set down by Victoria University, Ms Mokhtar was not permitted to write the voices' script herself, but she hoped to be able to reflect what her sister heard one day.

Once the programme was ready, Ms Mokhtar wore the scarf around Wellington for an entire day so that she could understand its full effect. She found the hardest activities were concentrating, talking to people and responding appropriately while the voices were constantly competing for her attention.

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"For me personally, it's changed the way I am with my sister - I [find myself] wanting to be more involved in her life."

"I hope that people can use it for a day and go about their usual tasks and see how different they are."

Her mother Anne said the experience had been valuable for her as well. She spoke of an "incredibly stressful" experience where she wore the scarf out shopping one day only to find herself becoming confused while trying to buy an item. When her cellphone started ringing as she stood at the counter, she felt overwhelmed. "I have a far deeper understanding and respect for my daughter," Mrs Mokhtar said.

"Now we know why she speaks so loud, because she's talking over the voices."

Ms Mokhtar is trialling the programme in Nelson this week with volunteers sourced through Supporting Families in Mental Illness. She hopes to gain funding and have the app running next year.

- Nelson

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