Laurie with her children
I have lived with Rheumatoid Arthritis since I was 14 years old so I’m a veteran of this disease at the age of 39. It greatly affected my life in so many ways – from participating in school/university, socializing and even deterred me from a career in piano/music since the RA affected my hands so significantly. I soon learned to advocate for myself as a patient to ensure I received the best care. I quickly learned that if I didn’t manage the disease, it would manage me. Through this personal advocacy, I came across the Arthritis Patient Charter. It sparked something in me - I felt empowered yet wasn’t sure where to direct these energies. Years later, I joined CAPA and became a member of the Steering Committee. CAPA is a grass-roots movement made up and for patients living with arthritis. We’re involved in a wide range of forums to ensure the voice of the patient is heard such as research, drug policy, increasing awareness and helping out individual patients. The voice of the patient – as provided through CAPA – is very much needed to help guide policy makers in making the right decisions.
Why was it important to CAPA to undertake a survey about pregnancy and parenting with arthritis?
As people with arthritis know all too well, arthritis affects people in their prime of their lives. It only follows that pregnancy and parenting are issues as well. Since becoming a parent, I’ve had to overcome so many different obstacles and challenges. The survey was really designed to get a better sense of the concerns and issues from people with arthritis and to give them a voice in bringing forward the important issues.
The issues begin before pregnancy when a person needs to consider the effect of medications we take on the baby. Unfortunately we don’t know as much as we should. The pregnancy and parenting with arthritis survey indicated this same concern from the broader community of people with arthritis - 88% of respondents indicated a high need for information about medication safety during pregnancy. This prompted me to write an article for The Mighty where I highlighted the Stress of women with Rheumatoid Arthritis during pregnancy.
Can you tell us about the people who responded to the survey?
We received a great response – 150 people responded to the survey! This is a lot considering we are talking about a very specific set of issues that affect people with arthritis. Most people who responded to the survey are living with inflammatory arthritis (like Rheumatoid Arthritis, Ankylosing Spondylitis, Psoriatic Arthritis). They represented a variety of ages and reflect the diversity of the Canadian population by province including rural and urban residents. There were a significant number (81%) of survey respondents who had considered or planned a pregnancy while living with arthritis and 58% had actually experienced a pregnancy. 65% of respondents who are currently parenting while living with arthritis.
What were some of the major findings?
The survey highlights many of the issues I expected for people living with arthritis when considering or planning pregnancy or raising children. There was a general decrease in importance of the topics from planning/considering pregnancy to the latter stage of parenting older/adolescent children. This could represent greater confidence in undertaking the parenting role while living with the challenges of arthritis, as well as the fact that the needs of the children are higher when they are younger. The top issues, regardless of parenting stage include:
- medication safety during pregnancy and breastfeeding;
- dealing with fatigue and flares; and
- the physical care of children.
The issues ranked as important for respondents varied slightly by stage. For example: the physical care of children was rated to be of higher importance when parenting young children (age 0-5) likely because of the physical challenges of arthritis combined with the physical demands of parenting. In contrast, the issues identified shifted when parenting school age children (age 5-12) when it became more important to have information on managing the demands of work, parenting and arthritis.
People who responded to the survey also indicated that they preferred accessing the information on the Internet. When accessing the information on the Internet, 40% prefer to access the information on their phone followed by their desktop/laptop computer (31%).
In general, the results of the survey indicate that patients have a high need for information when considering pregnancy and in carrying out their role as parents. Unfortunately, access to and reliability of this information is lacking. For example, access to certain information was low in some situations (such as Motherisk) while the quality of the information was identified as high. These results highlight that we need to be doing more to promote the resources and high quality information that does exist.
Was there anything that surprised you?
One thing that did surprise me is that people were not as concerned with getting information on the risk of passing arthritis on to their children. The people who responded to the survey still seemed concerned about the issue - 78% who were considering pregnancy or pregnant identified it as an important issue – but the concerns reduced over time where only 44% rated is as an important issue when parenting older/adolescent children.
What is CAPA doing with the results of the survey?
The survey results will be used to create an educational resource to assist people living with arthritis when considering pregnancy and in carrying out their role as a parent. Based on the survey results, we will initially focus on building the content for pregnancy and earlier stages of parenting. The resource will be web-based since most people who responded to the survey indicated this as their preference.
Thank you so much Laurie for sharing these results with us. If you want more information, contact Laurie at laurie DOT proulx AT arthritispatient DOT ca.