Arthritis affects individuals in many aspects of their life including decisions regarding pregnancy and in carrying out their role as a parent. Based on our own personal experiences, the Canadian Arthritis Patient Alliance (CAPA) Board of Directors recognized that there was a lack of complete and readily available information to assist people during this critical point in their lives. As a result, CAPA launched a project on pregnancy and parenting in 2015. The first phase of the project involved the development of a survey to identify patient information needs as it relates to pregnancy and parenting. The second phase focused on the creation of an evidence-based and medically-reviewed resource for people living with arthritis.
Improve the health literacy of people with arthritis regarding pregnancy and parenting
Improve self-confidence and reduce the stress of people with arthritis regarding pregnancy and parenting
Increase awareness of issues facing people with arthritis regarding pregnancy and parenting, including the key issue of medication use during pregnancy and breastfeeding
Problems addressed by Initiative
The resource aims to reduce the stress of people living with arthritis by providing information and solutions when facing pregnancy and in carrying out parenting tasks. It aims to improve the health literacy of people with arthritis so they feel more empowered and informed when facing critical issues and decisions regarding pregnancy and parenting.
Quality of patient engagement
The shared purpose broadly speaking is to improve care and meet the needs of women considering pregnancy and parenting and who live with arthritis, by providing information from individuals who have been through these experiences themselves.
How have you confirmed with all stakeholders that your purpose is understood, that
contributions have influenced the original plans and that disagreements have been
Regular communication with stakeholders occurred throughout the project including responding to comments on the survey and resource design to clarify intent and confirm which suggestions were incorporated. Updates were also provided to stakeholders on the overall status of the project and outreach activities such as poster and oral presentations.
Have you reviewed the shared purpose and its understanding among stakeholders?
The shared purpose was the subject of regular updates at monthly CAPA conference calls, and through e-mail interactions with stakeholders including health care professionals and researchers. CAPA is a virtual organization so many interactions were undertaken by email or phone. Where possible, in-person communications were undertaken (for example, if CAPA members were at conferences where researchers and health care professionals also were).
At which time points?
Communications happened at all points throughout the project where required. This included major milestones, such as survey development, communications approach, scoping the initial content of the resource, as well as resource development.
This project has been undertaken over many years. Project stakeholders have come in and out of the project, while it’s been driven by one project lead who is a volunteer. Given that the project is lead by a volunteer-based organization that is very open to feedback, input, and collaboration with others, the project has evolved over time as well.