News and research, Stages of life, Support, symptoms

iHOPE PCOS programme

Guest post by Carol Percy

What is the HOPE programme?

HOPE is an evidence-based self-management programme that supports people with long term health conditions to cope more effectively. That includes eating well, staying physically active, and following any necessary medical treatments, as well as managing stress, dealing with the emotional impact of their condition and planning for their future health. There is a suite of HOPE programmes tailored for different populations, run by Hope for the Community, a community interest spin-off company at Coventry University.

The iHOPE PCOS programme is described as being co-created – what does this mean?

We developed a version of the HOPE programme tailored for PCOS, by doing qualitative research with PCOS patients, Verity trustees and NHS health professionals, to find out why patients with PCOS might find self-management a challenge. We then asked patients and health professionals at a PCOS conference to vote on priorities to include in the new programme. We adapted the tried and tested HOPE course framework to include PCOS specific topics and activities. Verity helped us recruit women with PCOS to take part in a pilot study evaluating the impact of the new programme.

How is the programme delivered?

The iHOPE PCOS programme is a six-week online group course. This makes it very flexible for people who might struggle to attend face to face sessions, especially during the coronavirus pandemic. The online platform allows people to participate remotely at a time that suits them and at their own pace. The course is facilitated by two tutors who have PCOS themselves. 

What do you think makes the programme effective?

I think what makes the programme effective is the fact that it is based on years of research evidence from health psychology, and is tailored to the needs of people with PCOS. The co-creation process helped us create content and activities that address common issues. For example, we have a foundation of self-compassion in the programme to help with concerns around body image, emotional eating and weight. Not everyone will experience these but many people do. We also address how difficult it can be to navigate the healthcare system and feel empowered when there is so much more to be done to improve services for PCOS. One of the most important elements to iHOPE PCOS is the strength participants draw from each other and from the tutors. 

What were the results of the pilot testing done on the iHOPE PCOS programme?

We recruited a group of women to pilot test the new programme and were able to compare levels of depression, anxiety and mental wellbeing before and after they completed the course. 

For those who completed the programme, and completed the outcome measures, we found statistically significant improvements in depression and non-significant improvements in anxiety, and mental wellbeing. Women who volunteered to be interviewed about their experiences were very positive about the programme. Among the changes they experienced after participating were being able to prioritise their self-care more, developing a self-management mindset, improving their symptom monitoring, pacing and fatigue management and setting more manageable, realistic, motivating health goals.

Participants who were interviewed said they experienced improved mental health, being able to experience and cope with a wider range of emotions, both positive and negative, feeling increased self-compassion and reduced shame. Some reported being more open about their PCOS, with health professionals, friends and family, and also joining in advocacy for the wider community. We didn’t set out to change or measure physical health outcomes, but some participants reported physical health changes, including weight loss, more physical activity, better sleep, and better hydration. Some felt better prepared to deal with future health concerns and were continuing to practice what they’d learned in the programme.  I should make clear that there is some scope for selection bias in our data, in that people who had a good experience of the course may have been more willing to be interviewed. Also, one of the participants we interviewed reported that she did not find the programme helpful. We need to do longer term testing, ideally in a randomised controlled trial, to verify if the benefits seen in the pilot study can be replicated. 

Would you recommend the programme to everyone with PCOS?

I would definitely recommend that everyone who’s interested should give it a try as it’s free of charge at present. It may not be for everyone but there is no obligation to keep going if you don’t find it helpful. Do remember that if this course isn’t right for you, there will be other options for support that might be more appropriate. Your GP should be able to signpost or refer you for help elsewhere, for example the NHS Improving Access to Psychological Therapies (IAPT) programme, or for other kinds of counselling or therapy.

When Hope for the Community are able to run the PCOS iHOPE course again it will be available for individuals to sign up from the website.  We will also share details via social media @HOPE4TC.

Why was this a passion project for you?

I’ve had PCOS since my teens, and struggled with weight, hirsutism, depression and anxiety. When I was severely ill with depression a few years ago, I was fortunate to receive compassionate mind training that hugely helped with my ongoing recovery. I’d love to see interventions to improve mental wellbeing made more widely available to everyone who might benefit. 

Biography: Dr Carol Percy is an Assistant Professor in psychology who works with the team at Hope for the Community to support patients with PCOS. To find out more about the HOPE programme, please visit www.h4c.org.uk/

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