Background For any individual, the decision to start a family is an important one. For individuals with arthritis, the decision to start a family is even more difficult. Many decisions need to be taken, including the risks of taking or not taking medication while trying to conceive and during pregnancy, and the ability to carry out their role as a parent. Few resources exist to help individuals navigate these important, life-changing decisions1,2. It is for this reason and through our collective experience as people living with arthritis that the Canadian Arthritis Patient Alliance (CAPA) launched a project on pregnancy and parenting with arthritis. The first phase of the project involved a survey3 to identify patient information needs as it relates to pregnancy and parenting. The second phase focused on the creation of a medically-reviewed resource for people living with arthritis.
Objectives An educational resource was developed for patients by patients living with inflammatory arthritis. The resource was medically reviewed by healthcare professionals.
Methods Priority was placed on developing content for the topics identified as “very important” and “important” from the pregnancy and parenting survey. One Board member acted as project manager to develop the resource content and obtain input from people living with arthritis, researchers and rheumatologists. Methods to obtain input include software tools, e-mails and in person meetings. The educational resource was reviewed by medical experts to improve overall reliability and uptake.
Results The educational resource is divided in two sections – one focused on pregnancy and the other on parenting. The pregnancy section includes information on fertility and family planning, talking to your partner about parenting, medication use during pregnancy and breastfeeding, managing arthritis during pregnancy and labour and delivery. The parenting section provides a variety of “life hacks” or tips for the physical care of children and dealing with fatigue and flares as well as impact of living with arthritis on a patient's children. Ongoing efforts will be made to promote the resource and use will be monitored through social media, website metrics and surveys.
Conclusions CAPA developed a resource for people living with arthritis regarding pregnancy and parenting. CAPA aims to raise the profile of this issue and help people living with arthritis engage in dialogue with their healthcare providers during these critical life events. It is expected that use of the resource will enable shared decision-making, improve communication with health care professionals, and reduce overall stress for people living with arthritis and their families.
Ackerman IN, Ngian GS, Van Doornum S, Briggs AM (2015). A systematic review of interventions to improve knowledge and self-management skills concerning contraception, pregnancy and breastfeeding in people with rheumatoid arthritis. (Clin Rheumatol).
Backman, C.L., Del Fabro Smith, L., Smith, S., Montie, P.L. & Suto, M. (2007). Experiences of mothers living with inflammatory arthritis. Arthritis & Rheumatism (Arthritis Care & Research), 57, 381–388.
Poster from the Canadian Rheumatology Association meeting, February 2015 – Pregnancy and Parenting with Arthritis: Bridging the Information Gap.
Disclosure of Interest None declared