Jayne here, one of the peer workers on the EMPOWER study. I have lived experience of psychosis and I am delighted to be working in this role. I am very much looking forward to meeting participants in the study and sharing experiences of using the App. I started using the App just over a month ago and I thought I’d write this blog sharing how I’ve found it.
To get started, I met with a member of the EMPOWER team who installed the App on my phone. During installation, I was invited to choose three statements to include in the App relating to my ‘early warning signs’. At first, I thought about choosing statements that would indicate I was experiencing psychosis, for example ‘sudden and dramatic weight loss,’ ‘very paranoid’. However, I realised that, it would be more helpful to choose statements that if I rated them more highly than usual, then that might suggest I was becoming unwell. In the end, I settled on ‘poor concentration’ ‘ruminating over events or conversations,’ and ‘worrying about what people think of me.’ I still have these experiences and thoughts (doesn’t everyone:-)?); but for me, if my scores on these questions were to be very high, that might indicate I was becoming unwell.
Using the EMPOWER App
The App notifies you once a day when it’s time to answer a set of questions relating to your mental health and wellbeing. The questions take the form of statements and you rate yourself on how much you agree with a given statement on a sliding scale, from a score of 1 (i.e.: ‘Not at all’) to a score of 7 (i.e.: ‘A great deal’). Here’s a screenshot of one of my personalised questions.
At first, I was a little anxious about using the App, hesitating to answer the questions, worried if my answers really did reflect how I was feeling. I realised though, that the idea is, I should respond quite intuitively, simply rating how things have been since the last notification. After the first few ‘goes,’ I felt much more at ease, and found the questionnaire itself takes very little time out of my day – about 2 minutes! I’m finding that using the App encourages me to ‘check in’ with myself, pause and think about how I’m doing, and how I’ve been the last 24 hours or so. On a personal note, I’ve recently taken more of an interest in mindfulness and meditation, so using the App has complemented quite nicely other things I am trying to do for my recovery.
Another function of the App, provides charts of your responses from the previous week and month, and you can use this to see any potential patterns or changes in your responses. Here is one of my charts for the last month.
This chart plots my responses over the last month to my questions on ‘personal early warning signs’ (just to mention- the reason for the breaks in the line is my phone was off on those days and so I didn’t get the opportunity to complete the questionnaire). From the chart, I can see that my scores on my early warning signs vary quite a bit over the course of the month, but are mainly in the lower half of the scale. My feeling is if my scores on these questions were to increase significantly, that might indicate I was at risk of becoming unwell. I could then chat this over with friends and family and seek help if needed.
After you complete the questionnaire on a given day, the App sends a well-being message. Some of the messages provide a link to websites relating to the message theme. I’ve really liked receiving the messages and found that even if I don’t have time to explore web links, I can come back to that later. For me, the messages have made me realise that I’ve tended to focus mainly on my thinking in relation to concerns about my mental health. For example, if I get a little paranoid, I can worry that I might be at risk of becoming unwell. Working with the App and receiving the messages has encouraged me to pay more attention to other influences on my mental health e.g., relationships with others, physical health, sleep. It seems obvious now that these factors are very important 🙂 – and everyone’s experiences will be different of course! – but I’m glad using the App has reminded me these factors are also indicators of my mental health.
So, overall, using the App has helped me reflect on my mental health, both in a more focused way, in terms of my scores in the charts, and in a broader way – through the links and themes of the messages. It has also made me aware of other personal potential early warnings signs (and perhaps, I’ll get a chance to chat to some participants in the study about that). As a practical point, I really liked the fact that I could choose my own image as a background screen (I chose the image of a tree you see at the top of this page). I also like the ‘Diary’ function, where I can jot down brief notes on how I’m feeling that day (these notes are only available to the user of the App). Finally, like my colleague Davie, who is also a Peer worker on EMPOWER (and who has written a blog about starting with EMPOWER here), I am very much looking forward to getting to know people who will be using the App and sharing experiences, it will be great to hear what others think!