Partners Too: How to make a public awareness campaign about miscarriage

Beginnings

The UK’s Miscarriage Association had been hearing from partners of women who’d miscarried about their experiences of pregnancy loss. At the same time I was reviewing the literature on how intimate relationships are affected by miscarriage. In May 2013 University College London offered staff small grants (of under £2000) to carry out public engagement activities via their Beacon Bursary.

The Miscarriage Association and I applied for funding to cover my travel costs to visit and film people across the UK. Inviting partners to share their stories to build resources on pregnancy loss specifically aimed at partners (inspired by Healthtalkonline).

What did we already know?

The Miscarriage Association has a long history of supporting people during and after pregnancy loss; providing information and support; and effectively campaigning for improved miscarriage care (for example on changing terminology).

Recently they had noted numerous calls, emails and discussions on their Facebook group from partners of all genders and sexualities were experiencing problems around pregnancy loss and aspects of healthcare provision. And were unsure where to access help or how best to support themselves and their wives and girlfriends during and after loss.

Only in the past 40 years have Western studies addressed the psychological impact of miscarriage on women, only in the past 20 years has that research included male partners, and only in the past decade have the needs of lesbian partners been recognised (more on this shortly). The needs and experiences of bi women and Trans* partners remain largely unaddressed at this time. Research from the Global South has barely acknowledged partners reactions to miscarriage, focusing instead on inadequate provision of care and the blaming of women for miscarriage (this is echoed in earlier Western studies particularly in rural communities and in the initial studies of husbands men discussing miscarriage).

Most of these studies report similar findings. Women who’ve miscarried and their partners have similar initial reactions of grief, fear, numbness and anger that can be exacerbated if healthcare relating to the physical and emotional aspects of miscarriage is poor. (As a side issue this problem has yet to be resolved. Compare here with here and the ongoing campaigning work of the Miscarriage Association).

Some studies conclude women who’ve miscarried have stronger grief reactions lasting far longer than their partners. While others suggest women who’ve miscarried and partners may both experience grief and distress during and after miscarriage in similar ways, but not necessarily concurrently.

Within these studies there are limitations on what is asked and who volunteers to take part. Qualitative studies tend to reveal richer insights into people’s lives, but the focus still tends to be on the woman who’s miscarried OR her partner but not on their overall relationship or conversations between them. Discussions of those who’ve miscarried and experience relief or are not particularly distressed are anecdotally noted but rarely talked about in the literature.

Learning Point

Searching and synthesizing the existing research in this area enabled us to note what was well known so we avoided reinventing the wheel or asking questions on well-documented issues. It also highlighted limitations of existing studies and areas where further work was needed which focused our attention on what we should ask partners about.

Calls for stories

Having successfully been given funding, our initial plan as of July 2013 was to invite partners to tell us their stories via:
− Email
− Letter
− My filming them sharing their story
− Partners uploading copies of films made by themselves discussing miscarriage

From September to October 2013 we actively shared calls for stories across social media networks including Twitter; Facebook; through emails and on websites of various charities and organisations in health, miscarriage and pregnancy care; and via interested individuals.

We did not have any responses via letter or people submitting their own films. A small number of rich and moving stories sent via email.

Learning Point

Conversations with partners revealed they didn’t know where to begin or what to say when asked to share their story. They were discouraged by a task that felt time consuming and emotionally difficult and asked if we could develop a questionnaire to direct their storytelling.

Building a survey

I was already familiar with much of the existing literature around partners, relationships and pregnancy loss but I searched more specifically for papers addressing surveys of partner experiences of pregnancy loss.

I found Annsofie Adolfsson’s meta analysis of perinatal loss scales and Elizabeth Peel’s research on miscarriage and lesbian and bisexual women particularly relevant. I used Peel’s questionnaire as a template with a number of structured and open-ended questions in six categories:
1. Conception and pregnancy. 2. Experience of miscarriage. 3. Experiences with health professionals. 4. Giving and getting support. 5. After your miscarriage. 6. About you.

While the questions on age, ethnicity (borrowed from the UK’s Office of National Statistics) and location were relatively straightforward, the questions on sexuality and particularly gender proved more complex.

Although we were expecting the majority of respondents to be men, gaps in our understanding about Lesbian and Bi partners and partners who were Trans or Intersex meant the phrasing of questions around sexuality and gender needed to be both welcoming to those who previously had been neglected in research in this area, but not so complicated as it might exclude or put off men partners. As well as asking for examples of inclusive demographics questions I also took advice from Trans Media Watch on how best to phrase the question.

Learning Point

Using existing questionnaires saved time and built on established evidence. People who’d already researched related topics were extremely generous with their time and sharing their work. Taking advice on design from professionals working in this area ensured we learned from their experience and expertise.

Piloting

I sent paper copies of the draft questionnaire to the Miscarriage Association, colleagues who worked in social science research, and people who’d been affected by miscarriage asking for feedback on the wording, question order, comprehension and if the questions were delivered sensitively yet clearly.

Suggestions for changes included:
– checking the wording of some leading questions that assumed everyone talking about miscarriage would be identically affected and expected to be distressed
– altering the order of questions to allow people to talk through each stage of the miscarriage
– including questions on problems within healthcare around miscarriage and examples of good practice
– including additional things partners might have done regarding preparing for the pregnancy/birth (one suggestion was thinking of baby names)
– checking the phrasing of questions applied to diverse genders, sexualities and relationships (e.g. could be answered by those who were separated and divorced as well as partnered)

Following this I uploaded the questions to Survey Monkey and repeated the piloting process, this time asking people to both check the questions, wording etc. as well as the technical aspect of the survey working on different browsers and screens and ensuring issues of accessibility were met. This prompted more feedback and the survey was finally put live in January 2014 (the development and piloting process took around two months). David Hersh, Ronete Cohen, Nicole Slavin and Trevor Mathers were particularly helpful during this process. As were Public Health Wales, Mumsnet, Patient.co.uk, CHAIN and Dr Ranj in sharing links to the survey.

We offered paper copies to those who were unable to complete online and a copy of the final version is available for use and adaptation here. I applied retrospectively for ethics approval to cover the project on the basis all respondents were fully aware what their stories and ideas were being used for, and anonymity was maintained.

Learning Point

Although time consuming, discussing the wording, order and design issues in both paper and online versions ensured the survey was accessible, clear and easy to complete. Potentially sensitive or distressing questions were identified and phrased in ways that ensured partners knew what to expect. Links to help organisations were given at the start and end of the survey.

Advantages of public engagement work – being agile with your project plans

Using the 10 detailed stories and 160 survey responses from partners the Miscarriage Association and I:
– reviewed the stories and collated survey responses both individually and discussing the findings as a group
– selected core areas where the quantitative data illuminated or challenged what was already known about partner experiences
– picked out key stories (either from the free text stories or open ended survey answers) that illustrated particular aspects of pregnancy loss

Our original bid for funding covered me travelling around the UK to film partners discussing loss. However, while we found partners were willing to talk at length about their experiences via the survey or informally via social media (particularly Facebook), being publicly identified in films where they talked about their miscarriage was, understandably, not something people wanted to do.

Had this been a traditional research project we may have at this point struggled to change our approach. Worryingly, there might have been pressure put on researchers to persuade participants to respond according to our initial plans. But because funding was flexibly donated we could adapt what we did with our data to make what effectively became a far more powerful piece of work – and more effective campaign.

The Miscarriage Association had previously worked with cartoonist Kate Evans, who had documented her experiences of miscarriage We selected ten short descriptions from the open ended responses on the survey summarising common reactions and experiences. Kate picked six of these to represent in cartoon form (you can see them throughout this post).

Next, we decided to take some of the longer partner stories and have actors perform them. Amanda Band of SimPatiCo UK (who supplies actors trained to perform as patients in medical degree examinations) recruited six actors who we sent partner stories to. These were edited versions of longer responses given via the survey, with identifying information removed and aspects of the stories that were complicated or confusing taken out. We gave minimal direction, instead inviting the actors to interpret the various stories as they wished and allowing them also to adapt the stories rather than learning a script verbatim. This allowed for a more natural feel to the storytelling and further protected the confidentiality of those who’d originally responded to the survey.

I had asked Rob Eagle from UCL Communications and Marketing for some general advice around me filming the actors with a borrowed camera. Luckily Rob was able to help by using professional kit to film the actors and had the experience of filming to ensure the stories were professionally directed and edited. Natasha Judd uploaded the films to the Miscarriage Association’s YouTube channel and ensured the titles of the films conveyed what they were depicting both to avoid triggering distress while maximizing searches. Natasha also ensured all the films had captions to improve accessibility and reach.

We also sought permission from the authors of the longer stories to host a selection of these on the Miscarriage Association’s website as part of the campaign, removing identifiable information as required, but also noting that for many of the contributors their participation was in part to recognize their loss and be a memorial following the miscarriage. In some cases we included the names they had chosen for their babies or other details about their lives they felt important to publicly share. (I disclosed this within the ethics application for the project as we felt it important to allow people to tell their stories in their own words using terminologies and descriptions most meaningful to them, with the understanding this would be made public and to ensure they were comfortable with potentially identifiable information being in the public domain).

Lessons Learned

Using professionally created cartoons and films ensured the stories shared by partners were powerfully conveyed and easy to share widely through social media.

Information for Partners

Using a review of the available literature, the responses from the collated stories and surveys, and building on an existing leaflet (Men and Miscarriage) the Miscarriage Association produced a new leaflet for partners (including specific advice for those who were lesbian, bi and Trans plus additional information for partners whether they were still in a relationship or it had ended and referrals to different support organisations). This was carried out using feedback from people who’d experienced pregnancy loss and colleagues working in healthcare, several of whom who’d previously assisted with the piloting of the survey.

Launching the campaign

We worked with Ruth Howells at UCL’s media office to create a press release drawing on some of the headline quantitative findings from our survey and linking to the films, cartoons, leaflet (see above), and the longer stories written by partners. We provided a number of case studies of partners who could talk to the press and members of the Miscarriage Association were available to do interviews for print, broadcast and online media both before the launch and on the day of the launch (on 21 July 2014).

Lessons learned

Input from the press office ensured a clear release that could be distributed to a wide network of journalists via an organization they trusted. As we had run a survey, making a point of this being ‘new research’ gave a sense of immediacy to the work, while the cartoons and films proved very persuasive in attracting media interest. The availability of enthusiastic and eloquent case studies was important for television and the news desks of print media.

Coverage

Knowing if there will be press pickup of any campaign is always uncertain but we were delighted to see a positive response to the story across a wide range of print, broadcast, online and social media. This was particularly helped by an official endorsement of the campaign by the Royal College of Obstetricians and Gynaecologists (RCOG).

Broadcast media included

BBC Breakfast News and radio (BBC 5 Live, LBC, and BBC London, Stoke, Sheffield, Humberside, Shropshire and Kent). Jim Hawkins recommended the General News Service (GNS) who ensured cross-UK coverage.

Newspaper and web coverage included

‘Miscarriage leaves partners feeling invisible and without support’ (Telegraph)
Miscarriage partners often feel ignored and invisible (BBC Online)
Men who experience miscarriage ‘feel invisible’ (Scotsman)
Miscarriage, the silent kind of grief (Independent)
Hidden Hurt of Men After Miscarriage (Mirror)
Silent Victims of Stillbirths (Daily Record)
Partners ‘lack of support’ after loss of babies (Glasgow Herald)

Lessons learned

Having the endorsement from RCOG gave additional weight to the campaign, an additional angle and an increased sharing among health professionals and organisations. Ensuring a number of us involved in the project were on-hand to do media interviews before and after launch was vital. As was having resources for journalists to see several days before launch. This allowed for creative re-imaginings of the cartoons and stories as shown by this beautiful piece of work by Buzzfeed’s Kelly Oakes (the comments underneath are well worth reading). Or by Alex Galbinski in Jewish News, importantly highlighting how social and cultural issues can affect coping after miscarriage, something that’s frequently overlooked in UK/US based research.

 

Sensitivities and ethical considerations

Although driven from a community of partners we were aware throughout this work of the potential impact and possibility of causing distress. Particularly with the use of powerful visual images and personal storytelling.

We offered links to support services to all concerned (including journalists covering the story) and checked back with partners and women who’d miscarried throughout to update them on progress and check they were okay. This continued through and after the campaign launch. Overall people felt was cathartic, although we had changed and removed identifiable details many people (myself included) ‘saw their story’ in the cartoons and films.

Lessons learned

Opportunities to discuss on radio phone ins, comments beneath online coverage and places like the Miscarriage Association’s Facebook Group or Mumsnet’s miscarriage and pregnancy loss forum enabled people to respond and talk over their losses or trigger issues raised by the coverage in a safe space. It also allowed real time engagement with feedback, comments and suggestions for further work.

Future applications and where next

Although the cartoons focused on partner experiences, many of them also addressed miscarriage more generally. I used my Telegraph advice column to think about ways to open up these resources as a communication tool following miscarriage.

After launch day colleagues from the Miscarriage Association and UCL (Rob – Communications, Hillary – Public Engagement and Ruth – Media) and I reflected on how this work had gone, what we’d do differently, and how we felt cross-departmental and university/charity collaborations had worked. We will be using this to encourage others to try similar academic/charity partnerships.

Other applications include:
Ongoing information, advice and care for women who’ve experienced miscarriage, their partners, friends and families.

Supporting existing work on improving miscarriage care (for example Mumsnet’s ongoing campaign).

Encouraging healthcare providers to use the materials for medical education, continued professional development, and self-reflection around improving practice on miscarriage care; plus printing the cartoons for display in clinics, surgeries etc. Supported by this literature review outlining the core problems within miscarriage care currently.

Adapting the videos, cartoons and leaflets for use in non-Western countries and networking with practitioners and community groups in other countries on improving miscarriage care.

I wrote a piece for The Lancet looking back on the experience of doing the research, conversations with partners and working with cartoonists, where I found myself reflecting on one of my miscarriages in the essay Miscarriage: you don’t have to be strong for me. This seemed to be equally popular among clinicians as those who’d experienced pregnancy loss, and was subsequently featured in this Telegraph piece on miscarriage care.

To bring the project to a close I will be writing a final report for the project funders at UCL, reflecting on the progress, challenges and successes of the campaign. And drawing together all the coverage, discussions of the materials, and metrics such as views of the films, cartoons and accessing the leaflet; plus calls from partners to the miscarriage association or use of their Facebook group by partners.

Any feedback on the work undertaken so far would greatly help in this process, so please feel free to add your thoughts in the comments below.

If you would like more information on training on miscarriage care the Miscarriage Association can assist you. Or if you are undertaking research in this area and would like copies of papers or materials collected for this project please let me know.

Final lessons learned

Collaborative working, clear communication, a lot of enthusiasm and support from the communities of people who initially requested this work, plus all involved at University College London and the Miscarriage Association made for an innovative, creative and moving piece of work.

It is as yet unclear whether this campaign will lead to a change in attitudes and people becoming more aware of the needs and experiences of partners around pregnancy loss and we will continue to evaluate this. We hope what we have created will bring us closer to understanding partner loss and ensuring everyone affected by miscarriage receives the help and support they need.