Starting a family when you have inflammatory arthritis: can a co-produced intervention improve pre-conception health?

PhD researcher: Zoe Abbott

End of project summary

Main messages

With the right information and support, women and those assigned female at birth, living with inflammatory arthritis, can have a safe and successful pregnancy. At the start of this project there was very little information for patients with inflammatory arthritis around family planning. The right information and support are very important for patients to take part in shared decision making with their healthcare teams and make an informed decision. Even now, the resources are either very long and hard to get through, or very short and miss key stages in the family planning process.  

This PhD research comprised of 4 stages. First a literature review of published academic papers was conducted, this was followed by focus groups with consultant rheumatologists, to identify what additional support could be useful. The literature reviews informed the focus groups, and the focus groups refined further examination of the academic papers. Key problems which emerged from the literature reviews and focus groups: 

• Some words used by healthcare staff are often misunderstood by patients.  

• Staff and patients each believe the other will raise the topic of family planning. 

• Conversations about family planning are rarely had, and rarely involve good, shared decision making. 

Next, one-to-one interviews with patients and healthcare professionals, from across the UK NHS, were held to explore the topic in further detail. The experiences and opinions they gave led and informed the design of an intervention to support preference-based conversations focusing on preconception planning. The intervention created is a “conversation planner” which helps patients and staff think about the range of issues relevant to family planning with an inflammatory arthritis. The planner was co-designed with healthcare staff, academic staff, and patients, all together, in stakeholder meetings. Finally, the draft intervention was reviewed by patients and staff. 

• Initial user testing confirmed that the FAMILIAR Study Conversation Planner supports both patients and staff to raise family planning conversations and improve shared decision making.  

• User testing found both patients and staff wanted the Planner would be useful available in clinics and online.