How the US is rethinking support for people living with psychosis

We spoke to Krissa Rouse, Program Manager – Care Initiatives at the Schizophrenia and Psychosis Action Alliance (S&PAA), to talk about the realities of living with psychosis in the US, the gaps in care, and what she learned from our first joint workshop. 

What does daily life look like for someone living with psychosis in the US, and does that experience differ across communities? 

If someone is lucky enough to be in touch with a coordinated specialty care clinic in those first two years, life might look pretty manageable, because they have a lot of support, a lot of education takes place, and families are involved in care. But there are not enough of those clinics, and they’re not everywhere. There are many communities where individuals and families are struggling without being able to even understand what they’re managing. 

Even understanding that their loved one is having psychosis is one barrier that is really difficult for families. We hear about it all the time: “It took us two to three years to even understand that we were managing psychosis.” How do you ask for help for something when you don’t even know what is happening? You don’t know what to call it. 

Care after those first two years often breaks down. Many individuals are just having very fragmented care – their providers aren’t speaking to one another. They may have a therapist and a psychiatrist who don’t even talk to each other. And then of course there are problems with insight into one’s illness, which can make all of these things even more complicated. 

For the young people I work with, the hardest work is helping them to integrate these experiences of psychosis into the person that they are, because each one of them is an extraordinary person – wildly intelligent and creative and funny – and they just don’t see that in themselves. It can be really lonely, really scary, very highly stigmatised, and care can be very fragmented and difficult to connect with. 

What are the biggest challenges around care for people with psychosis in the US, and are there treatment approaches you feel are underused? 

There is a lot of social isolation and social exclusion and discrimination against individuals living with these conditions because they’re so misunderstood. People in our society believe that individuals are dangerous or violent, and people living with these conditions are very self-stigmatised as well because they believe some of the things that our society holds. It can be really lonely and isolating. 

If someone doesn’t have a regular address and they don’t get their health insurance renewal in the mail, their care can break down really quickly. They can lose housing really quickly. If they don’t have a good psychosocial support system, people can really just fall off the radar very quickly in our medical system. 

We are fortunate that there is a lot of wonderful work being done developing evidence-based practices for these conditions. It’s a wonderful world to be a provider in these days because there are good treatments — but they get siloed in university systems. The folks living a distance from universities or in rural areas just aren’t getting the evidence-based practices that they should. 

S&PAA has been working with CareLoop Health to bring lived experience feedback into product development. Are there any insights you’d like to share from the first workshop? 

Several individuals, and caregivers as well, reflected that their loved one would have potentially used the app at certain times, though it would have been hard to get them to use it at other times during their recovery. In the very early stages, when someone is just starting to hear words like “you will be diagnosed with schizophrenia” – that is a really difficult time in someone’s recovery. Many young people want really nothing to do with anything related to psychosis. And yet it’s also the time in their recovery when it’s most important for them to start hearing those words and start to engage with others who can help them learn about what this means. 

The advice from the peers was: keep asking. Keep asking, would you like to use this, or would you like to hear more about this? Because if the first ask is a hard no, that’s okay. Keep gently offering and sharing information about the app. 

Once everyone saw the app and understood how it could help people reconnect with care and possibly prevent a hospitalisation or a really significant episode of symptoms, I believe unanimously our focus group thought that this had real potential to improve people’s recovery trajectories. 

What support exists for families and carers, and is it adequate? 

It’s really difficult to decide what families are ready for. Some individuals can want all the information possible and some just need little snippets of information and have those digested before they can consume more. It’s really important to meet families where they are. They too have a long process of acceptance – integrating a diagnosis or condition into their vision of who their loved one is and who their loved one can become. There’s just a lot to unpack there with families and every family is unique. So there’s not enough of anything for them, but we’re working on it. 

How much are people living with psychosis already using digital tools, and do you see an opportunity there? 

S&PAA has conducted qualitative research that asks this question, and the results were surprising.  Even individuals with predominantly negative symptoms are already using digital tools, and they overwhelmingly responded “Yes” when asked about interest in apps and other digital tools being integrated into treatment and support.   

We wholeheartedly believe that digital tools are something that should be advanced in this area. Ideas such as CareLoop can help our communities improve their quality of life and their understanding of the ability that they have to recover and live a life that is meaningful to them. We want to help them understand that they matter in this world – that individuals living with these conditions and their families really do matter – and we want to help them stay connected so that they don’t forget how much they matter.