Background
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What type of information (in terms of scope and content) do women with RA seek in relation to pregnancy, post-natal care and early parenting?
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In what format and through what channels should this information be available?
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What is the role of consumer-based arthritis organisations in this context?
Methods
Study design
Participants and recruitment procedures
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be aged 18–45 years;
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have been diagnosed with RA by a rheumatologist;
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be on disease-modifying antirheumatic drugs (DMARDs), except if pregnant or planning to conceive; and
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have been pregnant within the last 5 years, be currently pregnant, or planning to become pregnant in the next 5 years.
Data collection
Telephone interviews
Focus groups
Data analysis
Results
Participant characteristics
Characteristic | Participants (n = 27) |
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Age (years), median (IQR) | 32 (31-36) |
Years since diagnosis, median (IQR) | 5 (2-13) |
Currently under the care of a rheumatologist, n (%) | 25 (93) |
Pregnancy status, n (%) | |
Pregnant within last 5 years | 18 (67) |
Currently pregnant | 5 (19) |
Considering pregnancy in next 5 yearsa | 18 (67) |
Australian-born, n (%) | 24 (89) |
University education, n (%) | 19 (70) |
Employment status, n (%) | |
In paid employment | 18 (67) |
Not working due to parenting responsibilities | 8 (30) |
Stopped work due to rheumatoid arthritis | 1 (4) |
Residential location, n (%) | |
Major city | 13 (48) |
Regional area | 12 (44) |
Remote area | 2 (7) |
Educational needs and autonomy preference scores
Outcome measure | Mean (SD) | Range |
---|---|---|
Educational Needs Assessment Tool (ENAT) | ||
Managing pain domain | 14.2 (4.8) | 0.0 - 24.0 |
Movement domain | 11.0 (4.5) | 3.1 - 20.0 |
Feelings domain | 10.7 (4.3) | 0.0 - 16.0 |
Disease process domain | 19.2 (5.7) | 8.9 - 28.0 |
Treatments from health professionals domain | 17.5 (7.0) | 2.2 - 28.0 |
Self-help measures domain | 16.0 (6.2) | 5.0 - 24.0 |
Support from others domain | 8.7 (3.9) | 3.0 - 16.0 |
Total ENAT scorea | 97.2 (30.8) | 27.3 - 156.0 |
Autonomy Preference Index (API)b | ||
Information seeking preference scale | 89.8 (5.6) | 77.5 - 100.0 |
Decision making preference scale | 68.4 (8.2) | 50.0 - 83.3 |
Interview and focus group data
Theme | Description |
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Lack of specific information regarding the pregnancy and post-natal periods | • Perceived lack of consumer-focused written information relating specifically to RA and pregnancy, the post-natal period and early parenting |
• Perception that the needs of younger people with arthritis are not well addressed | |
Information needs are dependent on the individual situation | • Difficulty of knowing what specific information will be needed given the variability in how RA can be affected by pregnancy |
• Information needs vary according to maternal stage and educational or professional background | |
Rheumatologist as the primary information source | • Expressed trust in rheumatologists who provide individuals with most of the information relating to RA and pregnancy |
Identified information gaps | • Four main subthemes were identified in relation to information gaps: |
• drug toxicity | |
• physical and emotional support services | |
• practical tips and strategies to assist in coping with daily challenges | |
• information for family, friends and the workplace | |
Accessible information through electronic formats | • Clear preference for written information which can be made available via electronic formats and updated regularly to maintain relevance |
Arthritis consumer organisations as a resource hub | • Role of organisations should be to: |
• collate and provide access to up-to-date, evidence-based information | |
• provide a referral system to support services and facilitate peer support groups | |
• provide RA-related education and training to upskill health professionals commonly encountered by women during this life stage |
Key theme 1: Lack of specific information regarding pregnancy and RA
“…I got my RA during pregnancy with my first baby, and I’d say the first five years of having RA … I had no idea, information was scarce, I had done millions of Google searches and went to libraries and there was nothing. Nothing about pregnancy, breastfeeding and RA. And even my doctors were really… didn’t seem to know much about what medications were safe, and they’d have to go and ring other doctors, and it was really just like… I thought gee, am I the first person in the entire world to have RA and be pregnant, you know…I think nowadays you can find more information but it is like one of the other ladies said, it’s pulling teeth, it’s not offered up to you…you’ve really got to search hard sometimes, and even just to find another patient who you can talk to is not easy. It’s really hard to find.”
“I picked up a brochure for my mother which was about…a brochure for carers of people with arthritis, and just so she could get some understanding, but the picture on the front was a really, old wrinkly hand and it was all kind of twisted, and I thought oh, that’s not a good perception. People don’t…and when you tell them you have arthritis they really don’t understand because they think it’s still, yeah, it’s still an old people’s thing.”
Key theme 2: Information needs dependent on individual situation
Key theme 3: Rheumatologist as the primary information source
“Look I trust in my rheumatologist. Sometimes it's, look and I have read up and it scared me a little bit with information, so sometimes I think it's best if I just leave…I don't investigate too much, I just trust in my rheumatologist and if she says it's safe, it's safe.”
Key theme 4: Identified information gaps
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drug toxicity
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access to physical and emotional support services
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RA-related information for families and workplaces
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practical strategies to assist with daily challenges
“I guess I’d like really clear answers on medications and exactly what they do or don’t affect in terms of pregnancy and breastfeeding and conception. And I know that information is hard to get but I think it’s really important to have…surely there’s a lot of things like diet and exercise and other relaxation techniques, those kind of things, surely can help on the peripheral sort of areas just to minimise your symptoms. And so more information about that would be great.”
“But what I find frustrating too is when you actually go into your pharmacy to get your medication and then the pharmacist disagrees with what your doctor says, and you have to argue with them to get your pills…you have to always put this argument in your mind, and to everyone else around you that you’re not…you know, you don’t want to harm your baby but you also need to be able to move…and it’s an inner struggle as well as a struggle with everybody else that knows what you’re taking…and between doctors…like rheumatologists have different opinions on what’s safe and what’s not, so it’s really…yeah, frustrating would be the top word I think.”
“…if there were even volunteers on some phone line or something you could ring, but, you know, I can remember going to the maternal health centre and telling them that… you know, with the pain was just getting too bad and I was going to have to go onto these drugs again and I’d have to stop breastfeeding, and we had a very young maternal health nurse at the time and she said well you just have to decide whether you’re going to be selfish and choose yourself over your child…you know that's a hard decision, and yeah, if you had a support person that you could sort of lean on I think that would be really helpful.”
“Some practical information as to how to do certain daily tasks without the use of certain limbs. So, you know, if my hands are so swollen that I can't dress myself, how do I pick up my baby using my forearms, how do I…how can I carry my baby to minimise the impact on my arms and shoulders and back and wrists etc. Clothing to put the baby in…that was a big thing for me, you know, most baby clothes have…stupid press-studs, yeah, which were just the bane of my life back then. So and I managed to find clothing that was much easier for me to get on and off the baby - so that was, you know, that was a big thing. And, you know, even just…every day household tasks, you know, tips as to how to, you know, reduce your fatigue and cut down on your household duties and to…minimise your energy output.”
“Just something that I think would be really helpful is also some information that you can give to your close…your partner, support people like your parents or your siblings or whatever, because I think a lot of women, especially as new mums, find it hard to reach out for help or support. But if there was something that you could actually just go, oh yeah, this is what my rheumatologist gave me to give to you and it said something like, yeah, this is what they’re actually…this is what she’s going through and…these here are some of the ways that you can help or this is some of the ways that this person needs some help, that would be really beneficial.”
Key theme 5: Accessible information through electronic formats
Key theme 6: Arthritis consumer organisations as a resource hub
“…I think we need to be realistic and rheumatologists don’t have time to go through all the other components that need to be addressed. So I think consumer organisations need to take on a huge role and get lots and lots of knowledge about it and they need to be - it needs to be - an area that there are courses run all the time, the information sessions run all the time, the written information sent out, there's telephone counselling where someone can ring and talk, you know, talk about the issues. I think it needs to become one of those areas that is a standard part of the service that they offer, cause I think it's really, really important.”
Discussion
1. Develop an online resource hub that could be administered by arthritis consumer organisations, comprising: |
• up-to-date, evidence-based information on medication safety for conception, pregnancy and breastfeeding |
• practical strategies for managing activities of daily living with a young baby |
• information on specific aids and appliances to facilitate activities of daily living during the post-natal period |
• detailed information on RA for family, friends, employers and colleagues including specific challenges during the pregnancy and post-natal periods and suggestions for supporting women with RA |
• a list of obstetricians with specific experience or special interest in planning and managing pregnancies in women with RA |
• a list of available support services including home help, counselling services, medication safety information services and government financial support options |
• resources for clinicians who may encounter women with RA during the pregnancy and post-natal stages |
2. Offer multiple information formats to comprehensively meet the needs of women with RA, for example: |
• online educational materials |
• seminars/workshops incorporating specialist health professionals and women with RA who can share first-hand experiences and demonstrate practical strategies |
• written education materials that can be mailed or emailed |
• telephone counselling services staffed by trained health professionals |
3. Facilitate online peer-support/mentoring programs to enable women to share personal experiences |
• consider the development of ‘outreach’ programs involving home visits by health professionals and/or peers during the early parenting period |
4. Promote the role of arthritis consumer organisations and available resources to relevant health professionals |
5. Develop disease-specific training programs to upskill midwives, maternal and child health nurses and allied health professionals |
6. Raise awareness of RA as a form of arthritis which affects younger women of reproductive age and use appropriate images in publications and online materials to reflect this demographic |