Women’s Health Information-Seeking Experiences and Preferences for Health Communications on FDA-Regulated Products: A Qualitative Study in Urban Area
Abstract
:1. Introduction
2. Methods
2.1. Study Design
2.2. Participants
2.3. Materials and Methods
2.4. Recruitment
2.5. Procedure and Data Collection
2.6. Data Analysis
2.7. Ethical Approval
3. Results
3.1. Motivations and Purposes for Seeking Health Information
3.1.1. Information for Personal Use
“I’m allergic to a lot of medication. Even though the doctor can prescribe things, I can’t take anything with morphine, codeine, or any of that in it. So, I have to be my own guardian about that stuff. I have to read those things because I need to know what’s in it!” (Generation C)
“I’ve been on two different kinds of high blood pressure pills for years. I’ve never understood why I’m on two. I would have thought a higher dose of one would make more sense. I just went to the clinic the other day and saw a new doctor and he gave me a third one! The bottle is still sitting there unopened. I’ve been asking people I know in the health industry, and some say I should, and some say I shouldn’t take it.” (Generation A)
3.1.2. Information for Caregiving to Others
“When it’s your kid, you do tend to read more about it before you say that, that medicine is OK for them, even if it’s an antibiotic. It’s something that you tend to read more about versus than saying OK, fine”.
3.1.3. Perceptions about Health Information Sources
Trust and Trustworthiness
“I trust it (FDA) because I’ve seen it all my life. Do I know what the FDA is? No. But I trust it because I’ve seen it on food, medical facilities, all that.” (Generation A)
“There are less pictures (in FDA materials). It just seems more like a required document, like someone put time into it, there’s a format they follow, and standards. It makes me trust it more.” (Generation B)
Perceived Conflict of Interest
“When you hear things about drugs or devices on the news, why isn’t the FDA coming to us? Why can’t we hear about it before a mass lawsuit? It would get to consumers quicker so they can make informed decisions before hearing that 20,000 people died.” (Generation A)
“The pharmaceutical companies and the FDA are all basically one and the same in many respects. The doctors, naturally, listen to the pharmaceutical companies. They owe—the borrower is server to the lender.” (Generation C)
Financial Interest
“A lot of people can’t afford diabetes medication but so many people need it! It seems like there are common illnesses and drug companies will jack the prices up on them.” (Generation C)
Time and Transparency
“For my personal doctor, I’ve been with her since I was 16. She has shared with me over the years what she does to keep herself apprised of the new information. I trust her now, but that’s a long-time relationship.” (Generation A)
“I question every doctor. If you get an attitude or upset because I’m asking you a question about your profession, we’re done. Even when you go to the pharmacy, you have to know your health.” (Generation A)
Verification of Internet Sources
“I don’t always agree or trust what I get on the internet. I do some examinations for myself and then make decisions.” (Generation C)
3.2. Challenges in Seeking Health Information
3.2.1. Comprehension of Health Information
3.2.2. Sufficiency of Health Information
“… I need to talk to every one of my doctors and figure out if the dose on mine is still good. Then I have to put all their information together because they won’t all agree. They won’t all say the same thing. I’ll come back around and ask more questions. A year later, I might have my answer or what I’m comfortable with.” (Generation A)
“I find there’s an overload of information, not that there’s a lack of. You’re going to get 500 websites talking about whatever subject you put in. Then you have to filter through that to try to get the information that you want.” (Generation B)
3.3. Preferred Methods and Sources for Health Information
3.3.1. Preferred Methods
In-Person and Live Interaction
“The nurses can usually explain to you what you’re taking the medicines for or if you have any other kind of issues. I would suggest they do the nurse line rather than the website.” (Generation B)
“If they have available staff there to answer the question, then this would be a good thing. Some people do better talking with somebody on the phone than reading.” (Generation B)
3.3.2. Preferred Sources
Personal Health Care Providers
“Doctors don’t tell you everything. You’re in there for a 15-min office visit, you forget the question you wanted to ask, so you get home, look up everything you want to know, then when you go back to the doctor, you can go over it.” (Generation C)
3.3.3. Utilized Sources
Internet
“First, I go to my internist or other specialty doctor, then I reinterpret what they tell me through Google.” (Generation C)
“You can research your symptoms, see what type of medication they may give you, then you go to the doctor and you’re ready to hear the options. You already have some information you’ve collected for yourself. That’s how I prepare myself.” (Generation A)
Social Media
“Another resource is Facebook. I don’t put a lot of private stuff on Facebook, but I’d ask if anybody knows anything about this.” (Generation A)
Health Fairs, Workshops, and Health Expos
“At the health fairs, they take time to explain it to you and answer questions as best they can.” (Generation B)
“[The expo] is once a year, and they give you lots of information about shots and things going on to keep seniors healthy.” (Generation C)
Newsletter
“I get a lot of information from the Women’s Hospital in Boston. They have a very good newsletter that comes out.” (Generation C)
Family Members and Friends
“My mom is a retired RN, so everybody in the family just goes to her with questions about health.” (Generation A)
“I go to the doctor a lot. I ask questions even when I don’t understand. I ask them to explain it to me. I write it down. I take it to my daughter who helps explain it to me.” (Generation C)
3.4. Preferred Communication Materials for FDA-Regulated Products
3.4.1. Websites
“A lot of people love the internet. They are quick on it. The world is in your hands, right here in this phone.” (Generation A)
“Websites would be a good place to go to learn about side effects, dosages, what causes medicine interactions.” (Generation B)
3.4.2. Brochures
“You know, [the doctor] can’t tell you everything in just 15 min so I think it’s a good thing. When you get home, you can read over something at your own pace.” (Generation C)
“If the pictures were real, that would help. In 20–30 years, we might trust pamphlets more. Then paper will be obsolete, so there’s no point.” (Generation A)
3.4.3. Podcasts
“We can simultaneously do three or four things … You can pick it up through your multitasking … when you hear something that gets your attention, if you can go to it right then, you will.” (Generation B)
3.5. Suggestions to Improve FDA Communication Materials
3.5.1. Multiple Materials and Approaches
“I don’t think it’s all the same. I think diversity is what we need … We need to have different things. This might work... You might want to look at all three [methods] and draw something from each one.” (Generation B)
3.5.2. Website Enhancements
“I didn’t realize till I heard about this project that there was a website [for FDA]. When I looked, I couldn’t believe how much information was there!” (Generation C)
“You need to know what you’re looking for when you go to the FDA site. If you don’t, it’s overwhelming.” (Generation A)
3.6. Emergent Themes
3.6.1. Religion and Spirituality
“I know the doctors are His helpers. That’s how I look at it. He’s got the first and last word when it comes to those decisions.” (Generation A)
3.6.2. Complementary and Alternative Medicine
“I’ve been using holistic and natural remedies since 1974. Yes, sometimes we need allopathic and there are some really good doctors, but the FDA puts a lot of fear out there in order to keep the pharmaceutical companies going.” (Generation C)
“My parents are 74 years old. They don’t look like it though. They’re more home remedy people. They don’t like the hospital and don’t want to go there. They have a home remedy book and they’ve passed it around my family. Some of these things really do work.” (Generation A)
4. Discussion
Limitations
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Demographic Characteristics | Number of Participants | Percentage of Participants |
---|---|---|
Generation | ||
Generation A: Born 1965 to 1980; 38 to 53 years old in 2018 | 36 (5 focus groups) | 33.0% |
Generation B: Born 1946 to 1964; 54 to 72 years old in 2018 | 29 (4 focus groups) | 26.6% |
Generation C: Born 1928 to 1945; 73 to 90 years old in 2018 | 44 (4 focus groups) | 40.4% |
Race | ||
African American | 66 | 60.6% |
Native Hawaiian/Pacific Islander | 2 | 1.8% |
Hispanic/Latino/Spanish Background | 2 | 1.8% |
White/Caucasian | 36 | 33.0% |
Did not prefer to answer | 3 | 2.8% |
Education | ||
Less than high school | 15 | 14.0% |
High school | 35 | 32.7% |
Some college education | 18 | 16.8% |
College degree | 28 | 26.2% |
Postgraduate education | 11 | 10.3% |
Did not prefer to answer | 2 | 1.9% |
Subtopics | Themes | Generation A * | Generation B | Generation C |
---|---|---|---|---|
Information for Personal Use | Information about drugs’ side effects, effectiveness, and drug interactions is the primary purpose for seeking health information | Several ** | Several | Several |
Information for Caregiving to Others | Younger women seek information as caregivers for their children’s vaccines, medications, and food allergies | Several | Several | None |
Subtopics | Themes | Generation A * | Generation B | Generation C |
---|---|---|---|---|
Trust and Trustworthiness | There is a perceived conflict of interest between the government, the pharmaceutical industry, and health care providers | Several | Several | Several |
The FDA is a reputable organization and the “FDA approved” logo is trustworthy | Several ** | Several | Several | |
There is lack of trust in the pharmaceutical industry due to its financial interest | Several | None | Several | |
Familiar health care providers are trustworthy, but it may take time and transparency to build this trust | Several | Several | Several | |
Internet sources need verification | Several | None | Several |
Subtopics | Themes | Generation A * | Generation B | Generation C |
---|---|---|---|---|
Comprehension of Health Information | Reading level of medical information is not appropriate for all patients | Many ** | Some | Several |
Sufficient Health Information | Overwhelming information is a barrier to finding specific health information | Several | Several | None |
Subtopics | Themes | Generation A * | Generation B | Generation C |
---|---|---|---|---|
Preferred Method | In-person and live interaction is the preferred method to receive health information | Several ** | Several | Several |
Preferred Source | One’s health care provider is the main and most preferred source for health information | Some | Some | Many |
Utilized Sources | The internet is used frequently for different purposes when seeking health information | Many | Some | Some |
Social media is a supplemental health information source for the youngest generation | Several | None | None | |
Older generations receive health information from health fairs, workshops, and health expos | None | Several | Several | |
The oldest generation uses newsletters as a source for health information | None | Several | Several | |
Discussing health concerns with family members and friends | Many | Several | Several |
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Share and Cite
Abdelwadoud, M.; Huang, J.; Villalonga-Olives, E.; dosReis, S.; Jansky, L.; Mullins, C.D.; Kusinitz, M.; Ovelmen, H.; Ju, J. Women’s Health Information-Seeking Experiences and Preferences for Health Communications on FDA-Regulated Products: A Qualitative Study in Urban Area. Int. J. Environ. Res. Public Health 2024, 21, 321. https://doi.org/10.3390/ijerph21030321
Abdelwadoud M, Huang J, Villalonga-Olives E, dosReis S, Jansky L, Mullins CD, Kusinitz M, Ovelmen H, Ju J. Women’s Health Information-Seeking Experiences and Preferences for Health Communications on FDA-Regulated Products: A Qualitative Study in Urban Area. International Journal of Environmental Research and Public Health. 2024; 21(3):321. https://doi.org/10.3390/ijerph21030321
Chicago/Turabian StyleAbdelwadoud, Moaz, Jennifer Huang, Ester Villalonga-Olives, Susan dosReis, Liz Jansky, C. Daniel Mullins, Marc Kusinitz, Heather Ovelmen, and Julia Ju. 2024. "Women’s Health Information-Seeking Experiences and Preferences for Health Communications on FDA-Regulated Products: A Qualitative Study in Urban Area" International Journal of Environmental Research and Public Health 21, no. 3: 321. https://doi.org/10.3390/ijerph21030321