a collaboration between academia and the Maternal Mental Health Scotland Change Agents

1. Peer researchers exploring barriers to meaningful conversations around mental health during antenatal and postnatal care: a collaboration between academia and the Maternal Mental Health Scotland Change Agents

2. Origins See Me Scotland Community Innovation Fund: £3210 • Travel • Recording equipment • Training • Researcher • Voucher for participants • Interview transcription

3. Objectives / Aims Identify barriers to talking about mental health in antenatal appointments.

4. Collaborators to the research • NHS GGC • Elaine Clark, Nurse Consultant • Provided support with: • Connecting with health boards • Ethical application • Moral support! • Connectingwithinterviewees • Home Start Stirling • PND Lanarkshire Support and Awareness • Aberdeenshire mums Facebook Group • Aberdeenshire Baby Group NMAHP RU • Professor Helen Cheyne, Chair of Maternal and Child Health • Professor Margaret Maxwell, NMAHP RU Director • Andrea Sinesi (PhD) Provided support with: • Training to undertake qualitative interviews • Preparing ethical application for University Ethics Committee and NHS boards • Data analysis

5. How did we become peer researchers? • Initial meeting at Glasgow Caledonian University • Four peer researchers attended in person, one via Skype • Research methods for the study: semi-structured, qualitative interviews with women who had experienced perinatal mental illness, and a focus group with midwives • We discussed: • General principles of qualitative research methods • The practicalities of undertaking qualitative interviews

6. Key topics covered during training: • Qualitative interviewing as a research tool • Recruitment of participants/sample • Information sheets/consent forms • The use of an interview guide • Practicalities of interviewing (location, recording, etc.) • Techniques in qualitative interviewing - a guided conversation

8. Participant Information Sheet / Consent Form

9. Understanding what women and midwives told us After 11 interviews and focus group were completed, and transcripts were available, we started: • Data analysis! • Thematic analysis: identifying common and recurring themes • Initial meeting in which we agreed what to focus the analysis on (any meaningful comment or episode about the topic of the study) • Data analysis conducted independently by peer researchers and researcher • Meeting in which all key themes were collaboratively identified and discussed • Final meeting: Selection of exemplary quotes, discussion about research paper

11. Theme 1: Right person right time / continuity of care / extra mile EXTRA MILE “Every midwife here has probably went out of their way, done things in their own private time, or stayed on late, or went in a bit early to work. It’s sad that the NHS relies on that” FAMILIARITY “She said, ‘I’ve read your notes’” WOMEN MIDWIVES • CONTINUITY “We worked very closely and we saw her regularly and saw her more than the recommended need to see her. But if we hadn’t, I don’t know what state she might have been in.” CONTINUITY “I had the same midwife at the doctors every time. I felt as though i could speak to her”

12. Theme 2: Missed opportunities “The general question was ‘how do you physically feel?’” “I told her about it, the PND - it’s not a topic she ever picked up on” WOMEN “I don’t know if it was time restrictions or a high workload. But is was very closed, there were no opportunities. If I was feeling suicidal, I wouldn’t have been telling her how I was feeling, because of the way she was snapping at me. “When you go to antenatal classes...they don’t talk about it.”

13. Theme 3: What helped/would have helped/questionnaires “I think if the right wording can be found, it’s something that could be brought up at every ante-natal meeting. Not in a forceful way, but just a light-hearted [chat], like ‘how are you feeling in yourself’.” STIGMA “If you’re terrified enough that if you fail it [the EPDS}, someone is going to come and take your children away or you’re signed up to some system where everyone knows you’ve got mental health issues, then you’re going to try and answer in a way that doesn’t say you’ve got mental health [issues]. WOMEN SUPPORT GROUPS Awareness of support groups would have helped: “I’ve not realised how many groups are actually available. It would be good if information was given to you about this.”

14. Theme 3: What helped/would have helped? STAFFING “It would depend on staffing in the service that day.” (Whether you could spend a bit more time with someone vulnerable) FEAR “I know it’s scary for women going in. Thinking oh my god, it might happen to me, but it’s good to know [that mental illness is possible, and recovery is possible]. MIDWIVES TONE “It’s important that a right level is found between asking people how they are mentally and not pushing.”

15. Theme 3: What helped/would have helped/questionnaires AWARENESS Awareness of support groups would have helped: “I’ve not realised how many groups are actually available. It would be good if information was given to you about this.” “Ready steady baby book [could be] used as a tool” WOMEN SIGNPOSTING / REFERRAL “They should definitely know where to send people, and they should be trained in how to.” AWARENESS People talking openly about mental health in pregnancy and postnatally.

16. Theme 4: Reaction of others / stigma / core beliefs / self stigma / personal explanation for illness WOMEN “I used to look at [other mothers] and think how can they be so happy and I couldn’t.” “[Women] are supposed to be feel happy that they’re pregnant. So they don’t want to say, actually I feel rubbish. [There are] all these glamourous people that are pregnant in the magazines and you’re supposed to look like that, but that’s just not reality.” Regarding medication: “I was initially against it, then I came home and I thought well, if I had a headache I would take paracetamol.” “[you think]. Oh no, my baby’s going to be taken off me, and that’s not necessarily true” “I think there’s this perception that [having a baby] is amazing - you don’t actually have any clue about the reality of it, how your life changes. A lot of people don’t like their new life, they really miss their old life and their old body.” MIDWIVES

17. Theme 5: Barriers FUNDING “No matter how hard the midwives, doctors and other community teams, health visitors, we will all know what that patient needs and we’re all fighting against a system, that’s […] not staffed well enough or facilitated” DEFENSIVENESS “Some [women] will be defensive [about mental health].” MIDWIVES TRAINING “I’ve tried to go on two [training courses] last year and I was set up and I was told the day before, you can’t go. So I’ve taken annual leave to attend training.” TIME “Nobody’s had time to spend with them to debrief”

18. Theme 5: Barriers LACK OF KNOWLEDGE “My GP refused to prescribe medication [during pregnancy]. ” RELATIONSHIP “I would find it really difficult talking to someone I’d just met.” WOMEN LACK OF KNOWLEDGE “[When I was pregnant and very mentally unwell] we phoned maternity triage, they said ‘you need to go to A & E’.” ASSUMPTIONS “[Midwife didn’t really probe because] she assumed I had been there, done that].”: Refers to second pregnancy.

19. Theme 6: Minimising “I just put I down to being pregnant, just like everybody does – ‘oh, it’s just your hormones’.” “It’s just the baby blues.” MIDWIVES “Maybe I’m just using [post natal depression] as a excuse for thing motherhood hard, which everybody does.” “I remember with my daughter, it was like, ‘oh, that’s normal’ [talking about depression and anxiety], it’s OK to feel like that. WOMEN “Other women were way worse than me.”

20. Theme 7: Physical vs Emotional “When you go to see the midwife, as soon as they ask ‘how are you feeling’, you automatically assume that it’s physical.” “You can’t physically see it happening to someone. You might say to someone who’s broke a leg,’ are you alright, can I help you?’ You wouldn’t get that [for mental health]. “ WOMEN “I think everyone expects you to be all excited and kind of happy all the time about it, even if you aren’t. Because physically I was doing fine.”

21. Experience of peer researchers • Lived experience – a shared experience / shared language • Learned new skills • Using a difficult experience to make a positive difference • Interviewees more likely to open up • Felt empowered It was lovely being able to listen to the ladies sharing their story, knowing that it could help them to share, and be listened to.

22. Reflection We could have: • Built in support for peer researchers, e.g. debrief after interviews. • Built in a small participation fee for peer researchers. Points to value of work, and recognises skills and experiences of people with lived experience.

23. ? Are there any themes or quotes from the interviews that reflect your own experience? Do you have any comments or thoughts to share about what came out of the research?

24. More peer-led research? Methods of Assessing Perinatal Anxiety (MAP Project - University College, London & University of Stirling. Starts June 2019 National Institute for Health Research: https://www.nihr.ac.uk/funding-and-support/funding-for-research-studies/become-a-reviewer/ Action Against Violence and Abuse: https://www.mentalhealthtoday.co.uk/blog/inequality/most-vulnerable-women-are-being-repeatedly-failed-a-call-for-trauma-informed-approaches-in-the-nhs Any ideas from your own work or experience? ?

25. Get in touch… Andrea Sinesi: andrea.sinesi@stir.ac.uk Clare Thompson: clareleethompson@gmail.com