experiencing miscarriage? Background Miscarriage affects one in - - PowerPoint PPT Presentation

Online health seeking behaviours: What information is sought by women experiencing miscarriage?

Patrick Pang @pangpatrick

The University of Melbourne, Australia

Meredith Temple-Smith, Clare Bellhouse, Van-Hau Trieu, Litza Kiropoulos

The University of Melbourne, Australia

Helen Williams, Arri Coomarasamy

Tommy’s National Centre for Miscarriage Research, The University of Birmingham, UK

Jane Brewin

Tommy’s Charity, UK

Amanda Bowles

Bears of Hope Charity, Australia

Jade Bilardi

Monash University, Australia @HISA_HIC #HIC18 31 July 2018

Background

• Miscarriage affects one in four confirmed

pregnancies

• Silence is common
• Because women often wait to disclose their

pregnancies after the first trimester

• Women have feelings of grief, loss, anger, and

guilt

• Also feeling alone and unsupported
• And they have nowhere to talk

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Online support

• Online support is not new, and it is a good place for

providing support

• Health website has a lot of “fact sheets”
• There are also discussion forums on the web.
• But do women want these?

Our goals:

• What do women with miscarriage experience want?
• How do we make online support better?

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Research design and method

• Qualitative methodology
• Semi-structured interviews
• Targeted women with miscarriage experience,

18-50 yrs

• Miscarriage happened 3 months – 10 years

ago

• Interviews were transcribed and coded by two

authors

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Participants

• N = 12
• Age: mean 36; range 27 – 48
• No. of miscarriage: median 2; range 1 – 7
• Highest level of education:

Secondary: 1 TAFE: 3 Undergraduate: 5 Postgraduate: 3

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Women’s needs

Information needs

• Causes of miscarriage
• Frequency of miscarriage
• Symptoms of miscarriage
• Preparing for a new pregnancy

(e.g. IVF)

• Research and breakthroughs
• Learn from other’s experience, but

not attaching to ideas from others

Support needs

• Ways to cope with grief
• Advice for family, friends and

healthcare professionals around things to say/not to say

• Preventing blame and normalising

the experience

• Memorial of the loss

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Design considerations of online support

• 1. Providing story sharing and memorial functions
• Important functions to have
• An outlet for sharing grief and loss, and make them not to feel alone
• Remembering the loss, and allow others to show support
• Moderated and anonymous sharing
• 2. Design and branding
• Look and feel (not overly bright or vivid) – women are sensitive
• Do not want an overly clinical or medicalised tone
• Participatory design?

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Design considerations of online support

• 3. Marketing
• The use of social media campaigns
• The role of healthcare professionals and clinicians
• 4. Keeping women informed about latest research
• Delivering recent research and breakthroughs
• Potential research platform for miscarriage studies
• A database of active research participants

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Limitations

31 July 2018

• Small sample size
• Women may not remember clearly

their experience if it was long time ago

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Conclusion

31 July 2018

• Understand the needs of women with

miscarriage

• Give the information and support they want
• Several design considerations:

1. Providing story sharing and memorial functions 2. Design and branding 3. Marketing 4. Keeping women informed about latest research

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Thanks…

31 July 2018

We acknowledge the funding from:

• Network Society Institute, University of

Melbourne

• Dr Jade Bilardi is in receipt of a National

Health and Medical Research Council Early Career Fellowship Dr Patrick Pang @pangpatrick mail@patrickpang.net

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