Women’s narratives as an aid to decision making in breast reconstruction – development of a patient experience DVD


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Eilis McCaughan1, Stuart McIntosh2, Carrie Flanagan1, Adele Boyd3, John Winder3
1University of Ulster, Coleraine, UK, 2Belfast City Hospital, Belfast, UK, 3University of Ulster, Newtownabbey, UK

Background

The decision to undergo breast reconstruction (BR) following mastectomy for breast cancer is complex, with potential benefits and harms that individuals value differently. It has been shown that satisfaction with care is linked to the provision of accurate information for decision-making. Evidence suggests that narratives of women who have undergone BR may be effective in supporting decision-making. This abstract describes development of a DVD of patient narratives for this purpose.

Method

Eighteen structured interviews were recorded over six months. Women were recruited from breast cancer support groups and local charities. Purposive sampling was carried out to include a range of women of different ages and backgrounds, who had undergone BR using autologous tissue or implants, or had no reconstruction. Interview narratives were transcribed and edited by a multidisciplinary team, including a patient representative.

Results

Recorded interviews lasted 40 minutes to one hour. Post-production, including editing, took 4 months, reduced these to 8 narratives, each 8 to 10 minutes long. The DVD contains a series of interviews where women discuss their decision about surgery choices post mastectomy. The women share their varied experiences regarding the impact of this decision on their everyday lives, including surgical complications andlong-term effects of surgery.

Conclusion

As survival following breast cancer treatment improves, the impact of surgical choices surrounding reconstruction becomes ever more important. It is crucial that women are provided with adequate and appropriate information allowing them to make an informed decision regarding treatment, and the opportunity to directly hear other women's voices describing their experience of surgery may be valuable. Tools such as this DVD, which is intended to be an adjunct to available literature and advice, require both specialist and patient input during their development to ensure maximum utility. A formal evaluation is currently being developed to assess efficacy.