| Literature DB >> 31777829 |
Caitlin Chew1,2, Nevena Rebić1,2, Corisande Baldwin2, Neda Amiri2, Laurie Proulx3, Mary A De Vera1,2.
Abstract
OBJECTIVE: Rheumatoid arthritis (RA) disproportionately affects more women than men, often striking during childbearing years. Because the Internet, particularly social media, is increasingly used by patients with chronic conditions seeking and sharing information, our objective was to conduct a qualitative descriptive study of threads on the social news website, Reddit, to understand the information needs and concerns of women with RA regarding pregnancy and parenting.Entities:
Year: 2019 PMID: 31777829 PMCID: PMC6857968 DOI: 10.1002/acr2.11069
Source DB: PubMed Journal: ACR Open Rheumatol ISSN: 2578-5745
Summary of subreddit threads downloaded and included
| Subreddit | Subscribers | Threads Downloaded | Threads Included | Average Thread Length | Average No. of Unique Particpants |
|---|---|---|---|---|---|
| r/Thritis | 3600 | 17 | 16 | 19.8 | 9.9 |
| r/Rheumatoid | 4800 | 43 | 34 | 11.9 | 6.7 |
| r/BabyBumps | 106 000 | 27 | 9 | 14.6 | 5.9 |
Between October 27, 2008, and October 27, 2018.
Average thread length is defined as the number of comments/replies to the original post.
Average number of unique participants includes the original poster.
Illustrative quotes for themes on information needs and concerns posted on Reddit forums about arthritis, pregnancy, and parenting
| Quotes | |
|---|---|
| Theme one: finding a community | |
| Sharing concerns | “I'm just really worried, it's caused a lot of stress between my husband and I, I don't think he fully understands how it's impacting me, and he's really stressed out picking up the work load that I'm unable to fulfil.” (r/Thritis, 2014) |
| “My docs just don't understand my concerns at all.” (r/Rheumatoid, 2016) | |
| Asking about other people's experiences | “I'm wondering if anyone has experience with taking prednisone (or anything else for RA) throughout their pregnancy.” (r/BabyBumps, 2015) |
| “I was just wondering if anyone has any experience with pregnancy/childbirth and RA that they're willing to share? Any advice?” (r/Rheumatoid, 2016) | |
| Providing and obtaining social support | “Congratulations, I hope your symptoms get better with pregnancy.” (r/BabyBumps, 2015) |
| “It can be done, much like everything else it's more challenging for those of us with RA. Best of luck to you.” (r/Thritis, 2015) | |
| Gaining self‐motivation | “You're right, it's better for both me and baby to get this under control.” (r/BabyBumps, 2015) |
| “I need to keep advocating for myself!” (r/Thritis, 2016) | |
| Theme two: making decisions about pregnancy and having children | |
| Making decisions about having children | “Is it worth having kids when you have arthritis?” (r/Thritis, 2018) |
| “Pregnancy, childbirth, and raising a kid are not a simple, easy, or light thing to get yourself into.” (r/Rheumatoid, 2016) | |
| “That said, don't have kids if you don't really, really want them, they make life 100x harder in certain ways.” (r/Thritis, 2018) | |
| Desiring to have children | “I have wanted to have kids since I was babysitting so I wasn't going to let RA take that from me too.” (r/BabyBumps, 2014) |
| Receiving and providing encouragement to have children | “As for actively parenting while treating your arthritis – it is totally doable. Sure, you have to manage your health and caring for your kid but with planning, self‐care, and a helpful co‐parent, it is manageable.” (r/Thritis, 2018) |
| “Even with the tough times, I'm really glad I have my kids.” (r/Thritis, 2016) | |
| Theme three: worrying about the impact of arthritis on pregnancy and parenting | |
| Physical challenges | “I'm personally a lot more worried about how I'll cope with holding him and [carrying] him after he's born.” (r/Thritis, 2018) |
| “I don't know what's going to happen, I'm struggling with looking after my son, can't lift him up without being in pain.” (r/Thritis, 2014) | |
| Financial challenges | “I quit my job so that if I'm in pain during this process, I can take it easy.” (r/Rheumatoid, 2016) |
| “The maternity leave was another thing I was worried about…I just wonder how women function when they're coming off their meds but still have to work.” (r/Thritis, 2015) | |
| Emotional challenges | “This has been very frustrating and has left me in tears a number of times.” (r/BabyBumps, 2015) |
| “Caring for an infant is going to be exhausting. I was in tears often from the lack of sleep and crazy schedules.” (r/Rheumatoid, 2017) | |
| Theme four: information needs on managing arthritis throughout the perinatal period | |
| Managing arthritis before pregnancy | “How did you handle the MTX detox between pregnancy and trying to conceive? Did you have any flares? Did you lose your progress? Did you have flares when you came off your medicine?” (r/Rheumatoid, 2017) |
| “I'll need to be off the medication for at least three cycles, but what do I do about my RA during that time?” (r/Thritis, 2015) | |
| Managing arthritis during pregnancy | “I'm just so nervous about taking anything it's like my gut instinct telling me not to. If I do and something goes wrong then I'd never forgive myself you know. At the same time I don't want to end up in so much pain that I can't care for my baby. It's so scary.” (r/Rheumatoid, 2016) |
| “My doctor suggested that I take prednisone, but I understand there might be a low risk of oral clefts if taking during the 1st [trimester], and low birth weight and premature labor if taken throughout pregnancy.” (r/BabyBumps, 2015) | |
| Managing arthritis after pregnancy | “It came back with a vengeance shortly after giving birth.” (r/Rheumatoid, 2017) |
| “After I had the baby, when my hormones shifted back, I had a major RA flare up. Within a week of giving birth, I had to go back on a cocktail of meds.” (r/Rheumatoid, 2017) | |
| Theme five: seeking pregnancy information and resources for arthritis | |
| Information from using the Internet | “This is a subject that is super hard to find info on, and I hope for the best! Keep us updated!” (r/Rheumatoid, 2016) |
| “Do the research on any and all medications you are currently taking (pregnancy categories, do you need extra folic acid or other supplements, what OTC med can you take for pain, etc).” (r/Rheumatoid, 2017) | |
| Information from a health care provider | “I've already discussed it with my physicians and I'm super lucky to have extremely supportive and honest healthcare workers in my corner.” (r/Rheumatoid, 2016) |
| “My [rheumatologist] is great and said that trying to have a baby at some point is fine, as long as I consult my doctors first so that medication can be adjusted 3‐6 months ahead of trying to something pregnancy safe.” (r/Rheumatoid, 2018) |
Abbreviation: MTX, methotrexate; OTC, over‐the‐counter.
Figure 1Schematic showing the interrelation between physical, financial, and emotional challenges contributing to worrying about the impacts of arthritis and pregnancy (Theme 3).
Figure 2Thematic map of identified themes, showing how seeking pregnancy information and resources for arthritis (Theme 5), particularly using on the internet captures finding a community (Theme 1) and making decisions about pregnancy and having children (Theme 2). Dashed arrows depict relationships between categories across and within themes.