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A Decision Aid Intervention for Family Building After Cancer: Developmental Study on the Initial Steps to Consider
Catherine Benedict1,2, Katherine L Dauber-Decker3, D'Arcy King3
1Stanford University School of Medicine, Palo Alto, CA, United States.
JMIR Formative Research
|January 22, 2021
Summary
This study developed the Roadmap to Parenthood website using user-centered design to help young women diagnosed with cancer make informed decisions about fertility preservation and family building after treatment.
Area of Science:
- Oncology
- Reproductive Medicine
- Health Informatics
Background:
- Patient-centered care requires resources that are usable and meet patient needs.
- User-centered design (UCD) is an empathy-based, iterative approach to product development based on user understanding.
Purpose of the Study:
- To outline the development process of a patient resource prototype.
- To support young women post-gonadotoxic cancer treatment in decision-making for fertility care and family building.
Main Methods:
- User-centered design (UCD) practices were employed to create the Roadmap to Parenthood decision aid (DA) website.
- Development followed guidelines from the International Patient DA Society and Ottawa Decision Support Framework, incorporating patient diversity and health literacy.
- A multidisciplinary steering group provided input throughout the iterative design process.
Main Results:
- The Roadmap to Parenthood DA website prototype was developed iteratively, focusing on end-user needs.
- Key development steps included formative research, goal/format determination, design (personas, storyboards, wireframing), and content creation.
- Special considerations were given to the emotional aspects and iterative decision-making context for this patient population.
Conclusions:
- The described UCD strategies provide a strong foundation for usability testing and refinement of patient resources.
- Future research will involve piloting the DA and a planning tool to assess improvements in decisional conflict regarding family building.
- These UCD strategies can be adapted for developing other patient resources to enhance usability, empathy, and engagement.
Keywords:
cancerdecision aiddecision support techniquesfertilityinternet-based interventionmobile phonepatient-centered carepsychosocial interventionuser-centered designweb-based interventionMore Related Videos
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