@HISA_HIC #HIC18 31 July 2018 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 Online health seeking behaviours: What information is sought by women experiencing miscarriage?
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 31 July 2018 @pangpatrick @HISA_HIC #HIC18 2
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? 31 July 2018 @pangpatrick @HISA_HIC #HIC18 3
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 31 July 2018 @pangpatrick @HISA_HIC #HIC18 4
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 31 July 2018 @pangpatrick @HISA_HIC #HIC18 5
Women’s needs Information needs Support needs • Causes of miscarriage • Ways to cope with grief • Frequency of miscarriage • Advice for family, friends and healthcare professionals around • Symptoms of miscarriage things to say/not to say • Preparing for a new pregnancy • Preventing blame and normalising (e.g. IVF) the experience • Research and breakthroughs • Memorial of the loss • Learn from other’s experience, but not attaching to ideas from others 31 July 2018 @pangpatrick @HISA_HIC #HIC18 6
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? 31 July 2018 @pangpatrick @HISA_HIC #HIC18 7
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 31 July 2018 @pangpatrick @HISA_HIC #HIC18 8
Limitations • Small sample size • Women may not remember clearly their experience if it was long time ago 31 July 2018 @pangpatrick @HISA_HIC #HIC18 9
Conclusion • 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 31 July 2018 @pangpatrick @HISA_HIC #HIC18 10
Thanks… 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 31 July 2018 @pangpatrick @HISA_HIC #HIC18 12
Recommend
More recommend
