"I wish there was a one-stop shop for a lot of this": Participant design of an infertility consumer health resource

Objectives: By exploring the barriers individuals with infertility face when accessing health information, this study identifies preferred information channels to connect this population with authoritative and relevant medical and mental health information to design an infertility consumer health resource. Infertility impacts approximately one in every eight people; however, there is a lack of information available on the topic and a social stigma that often keeps individuals from seeking or sharing information. Online communities often support individuals and facilitate access to information related to building a family.


Methods: The researchers conducted interviews with members of an online infertility support group. The project used purposive sampling methods to recruit participants through both direct contact (identified from participant observation within the online support group) and through recruitment messages posted in the Facebook group. Virtual, semi-structured interviews consisted of questions about preferred information sources, barriers to accessing needed information, and stigmas they faced as people going through infertility. Each research participant also shared what they would include if they were to design an information resource for a person going through infertility. The findings were analyzed with an open coding scheme, looking for emerging patterns from the transcripts.


Results: Participants described the desire for a “one-stop shop” online information resource, which would include information about medications, treatment timelines, health insurance coverage, online/in-person support groups, mental health, and communicating about this sensitive topic with partners and loved ones. The online information platform could provide varying levels of depth and content regarding infertility depending on where the individual was in their infertility journey. For example, the resource might initially outline the multiple types of infertility and their frequency of occurrence in plain language, then describe the effects of and distinctions between different tests and medications based on the diverse types of diagnoses. As an individual progresses through their infertility journey, their knowledge about infertility increases accordingly, so information with complicated medical terms as well as relevant academic research papers on specific symptoms and treatments is well suited for individuals at a later stage. Providing information based on the timeline helps individuals at various stages find the information they need more quickly. The information can be presented in various forms, such as medical websites, videos, books, forums, and podcasts. Also, participants expressed their desire for information about the success rates of different clinics as well as information on the topic of male infertility.


Conclusions: This study demonstrates the need for an online platform that provides individuals with infertility with comprehensive and accessible consumer health information. Participants highlighted the need for a one-stop shop of information regarding infertility with varying levels of depth and content based on the individual's timeline and infertility journey. The study provides valuable insights into the information needs of individuals with infertility and potential ways to meet those needs.