Ups and Downs
by Julie Billsborough, Roger Smith
We have been involved in a study looking at experiences of support and treatment in bipolar disorder. And it has recently been published in the Journal of Mental Health so it felt like a good time to reflect on this piece of work. The project was carried out by a team of researchers based at Rethink Mental Illness, some of whom now work at the McPin Foundation.
The Ups and Downs study followed on from a research project into recovery from severe mental illness. We realised that some people with bipolar received different levels of support when ‘up’ to when they are ‘down’ and we wanted to better understand this. We interviewed people with bipolar diagnosis and their carers or supporters. We asked about experiences of support and needs during manic and depressive periods, and how these may have been met. Interviews were supplemented by a national web-based survey.
We found that support needs often differ according to mood. When high/manic, people needed calming influences to avoid overly stimulating activities. When depressed, more positivity, more activity and engagement in everyday life routines could be especially helpful. Providing effective support was crucial.
1) Being listened to and not feeling judged by the listener was especially important.
2) Empowerment: Interviewees had developed a range of coping strategies to moderate their extremes of mood. Carers helped by gently reminding them of what they could do to help themselves. Mental health professionals have a role to play too. Talking therapies can provide strategies to manage moods, while giving people control to adjust psychiatric drug dose in response to mood changes can help too.
3) Receiving support before reaching a crisis point: Key to this was being aware of, and acting on, early warning signs. Although not all participants were aware of their mood changes, particularly when becoming manic, supporters often helped to detect early warning signs, and acted to help prevent crises. Early action is crucial as extreme highs can develop quickly.
I enjoyed being part of such an enthusiastic team. We also got on extremely well. In particular, I found the workshops both stimulating… and tiring! I helped to write the academic paper which was a new challenge for me. It allowed me to gain in-depth knowledge of the relevant research literature and to discover just how much work is needed to have research published in quality journals.
Interviewing family members (one mother, one wife, and one sister) was new to me. All three women had been through terribly difficult times in keeping their son, husband or brother safe and seeing them through extreme ups and downs. Each carer had spent many hours researching in order to support effectively. I was most moved as I gained a new insight about the ‘really listening’ that so many of us with the bipolar diagnosis talk about. Although only the sister used the word ‘love’, each left me with a strong feeling that it must be love or something very like love that often makes all the difference.
We thought it was important to make the results of the study as accessible as possible, so we produced the following booklets:
Staying Well with Bipolar – your guide to dealing with the ups and downs
Our academic paper abstract can be found online:‘Listen, empower us and take action now!’: Reflexive-collaborative exploration of support needs in bipolar disorder when ‘going up’ and ‘going down’.