Background
Methods
Study design and population
Sampling, recruitment approach, and eligibility criteria
Theoretical domains framework (TDF)
Study protocols for focus groups and interviews
Focus groups
In-depth interviews
Results
Sociodemographic characteristics
Characteristics of participants | Groups 1 and 2 (n = 31) | |
---|---|---|
Age of participant (years) (μ ± SD)
| 28.97 | 3.98 |
Husband’s age (years) (μ ± SD)
| 32.29 | 4.81 |
Nationality (N, %) | ||
Lebanese | 30 | 97 |
Highest Educational Level (N, %) | ||
University degree or higher | 24 | 77 |
Specialized Health-Related Major (N, %) | ||
Yes | 13 | 42 |
Employment (N, %) | ||
Working | 20 | 65 |
Area of Residence (N, %) | ||
Beirut | 13 | 42 |
Highest Educational Level of husband (N, %) | ||
University degree or higher | 21 | 68 |
Husband’s Employment (N, %) | ||
Full-time or part-time employee | 24 | 77 |
Self-employed | 7 | 23 |
Monthly income of the family (N, %) | ||
600,001 – 1999,000 ($401 – $1332.9) | 8 | 26 |
2000,000 – 2,999,000 ($ 1333 - $1999.9 | 8 | 26 |
≥ 3,000,000 (≥ $ 2000) | 10 | 32 |
Factors affecting the decision to participate
Factors | Sub-theme | Quotes |
---|---|---|
Personal factors | Altruism | “I know that they take a number of people and some research on them to come up with results for a certain topic that is beneficial for the society” G2_01. “Studies might be of great benefit for the future.. These studies might help us all… that’s very encouraging in my perspective” G1_18. “The fact that my participation may be an added value to many other persons, like curing other persons or it might help others. This makes you feel you are doing something important” G1_01. |
Self-confidence | “I do, I love to be updated on new information, I read some studies online, I love to discover new results, and things that happened with doctors, for example if I am pregnant I will read about pregnancy, the foods I can eat and the foods I can’t, food sensitivities for pregnant women. I also read the medicine leaflet and ask the pharmacist about it.” G1_07. “Some people are not outspoken.. they don’t like sharing their opinions and thoughts so they simply refuse to participate in the study. At the end of the day, it is something personal… ”G2_02. | |
Personal interest in the topic | “When she told me the study is about pregnancy I got excited since I’m pregnant and this topic attracts me” G2_01. | |
Previous understanding of the nature and purpose of research in general | “They don’t know what a research study is. For example, you come and tell a patient to take a certain medication and you explain to her that studies showed that it is beneficial to you. She doesn’t understand it or accept it. What is research? She doesn’t know what it means.” G3_13.
“Here in this country and in this area of the world get scared when you tell them about a ‘study’. They directly think as if they are study subjects and that you are going to experiment on them”
G3_05.
| |
Educational level | “Yea, it’s not important to have a bachelor’s or master’s degree to be able to enroll in a study, little things matter… share personal experience and that would be beneficial.” G1_12. “Not really, in one of my recent studies I have patients of low socioeconomic status, not well educated. .. And we have educated ones that accept and also others who don’t accept .. So I don’t think there is a trend”. G3_07. “Some people are not educated, and they are not very open and would hesitate to participate in a study because they don’t know where this goes.. This is very probable. A lot of people are like this and think this way. They would consider it as a waste of time” G1_23. | |
Previous research experience | “Yes, I already participated in a study before during my first pregnancy so I didn’t have any problem..” G2_06. | |
Contextual factors | Societal factors | |
Fostering scientific research in society | “I think in this time yes they accept since now we are in the era of science, and it’s rare now to find uneducated women or in the working environment or study environment, any educated women nowadays joined a study or conducted one in her university it is a must.” G1_14. “In my opinion, the Lebanese society is mainly open to participating in studies” G3_04. “I think the culture is very different… in Lebanon and in the Middle East in general the attitude towards research is very different than in the west… we don’t have the same level of motivation compared to the western countries” G3_12. | |
Exposure to research through the media | “So, I think that there should be more emphasis and the benefit of these research. There should be awareness campaign. For example, we are doing this… for a better society, for less sickness in the country, things like that. So that people would start thinking and seeing where this is leading. This is important.” G1_01. | |
Family and friends | “I might tell my husband or my friend that I participated in such a study, and some people can be understanding and encouraging, but others can dissuade you and tell you, why do you want to waste your time on such a thing?” G1_18. “I had one participant who was interested then when she told her husband on the phone that she participated in the study, 5 min after we finished the 1st visit, she came to me and told that she can’t participate anymore because her husband doesn’t want her to” G3_01. “I do believe that if family members advise her not to give out her information, she would listen to them and just not participate. So, yes, there are people who are influenced by family members.” G2_02. | |
Study characteristics | ||
Burden of the study | ||
Time commitment | “The major barrier for joining a long term study is time.. Maybe this would be the only barrier” G1_11. “When it is cross-sectional, they will think it is easy to finish for just one time. When it is a cohort, they will see it as something complicated. They do not want commitment for a long period of time” G3_11. | |
Logistical inconvenience | “But leaving her baby for some time to participate in the study will be hard for her.. Leaving her baby with someone will be out of her comfort zone.” G1_11. Interviewer: “If it requires you to come and go to finish the visits”. G1_13: “This will be hard for me I can’t”. | |
Type of data collected | “On the contrary. How are you supposed to do a credible study if you don’t take any sample! Questions are not enough on their own.” G2_03. “Pregnant women with hormonal rush, who might have eaten a lot the previous night, it’s really an intimate thing actually, especially that you really don’t think of what you ate until you see them written on a paper and you will be like (oh what have I done to myself)” G2_4. | |
Ethical considerations | “Telling the subjects that the information collected will remain confidential and anonymous. This also helps in encouraging people” G1_22. “To have everything clear to them from the beginning” G1_24. “Not at all, already I can skip any question I don’t want to answer, after I signed the consent I knew she can ask me whatever she wants, and she gives you the option to leave whenever you want which is relieving” G2_01. “When you finish with the study, tell us the results that you get” G1_24. | |
“But I will ask them from where they are coming.. I will help them, but if they have no approval from their university to do a study, then I won’t do it.” G1_07. | ||
Incentives | “For example, if the location of the study is far, maybe providing them transportation, so yes, some would be motivated by incentives” G1_22. “Yes. This is a nice way to encourage people to participate in the study with the incentives” G1_25. “Some women get encouraged because of the incentive we give, but these people are also a minority. People who get excited because of the incentive are mainly from the Outpatient Department clinics” G3_03. “Yes maybe for those who need the money this would push them to participate” G3_06. | |
Researcher interpersonal skills and physician endorsement to participate | “If the researcher is pleasant and makes you feel comfortable. If they talk to you in a nice way, if they meet them at times that suits the subjects. To be punctual on their appointments, especially if someone has a baby they can’t stay all the time and they are occupied most of the time. The personality of the researcher is very important” G1_17. | |
“I know for a fact if the patients were asked to join by their doctor they will be more prone to say yes, since they will think that their doctor knows what he is doing and not pushing them to a random thing, which will make them more comfortable to join.” G1_04. “We came here [focus group] upon the request of our doctor” G1_08. |
Personal factors
Contextual factors
Study characteristics
The interaction between the factors influencing participation
Recommendations to improve participation
Factors influencing participation | Recommendations | Quotes |
---|---|---|
Personal factors | ||
Previous understanding of the nature and purpose of research in general | Exposure of the target population to the importance of research by giving them examples of successful international studies that have resulted in positive change in health and well-being. | G1_17: “If you can provide the moms with such information from studies that have been performed abroad, maybe then they will be more encouraged to participate. I think that people are most interested by the baby’s health, so they need something to confirm to them that what you are talking about really has an effect.” |
Contextual factors | ||
Exposure to research through the media | Enhancing the visibility of research in the social media, in the form of brochures, and on the institution’s website | G2_02:“You could advertise the study on a Facebook page or you could write a small article about the study in a way to encourage women to participate. For example, I personally scroll through Facebook and access pages or articles that might be of interest to me or that might provide me with new information I am interested in.” |
Study characteristics | ||
Burden of the study | Going beyond academic institutions, where often the same patients receive frequent invitations to participate in research, by targeting community settings | G3_07:“In our department there are a lot of ongoing studies and that’s why I think they become overwhelmed with so many study requests. Every patient who comes to deliver will be on 2 or 3 studies at least” |
Spreading the data collection visits over a wider timeline | G1_12: “It’s okay if it is just for 30 min every 2 weeks or every month its ok.” | |
Collecting data through email or via phone rather than meeting in person | G1_12:“If it’s just a phone call she might take it when her baby is sleeping, but I imagine that leaving her baby at home and going somewhere for the sake of the study is not possible.” G1_20: “Do you have to do it in person, can’t you by email to fill a questionnaire” | |
Incentives | Tailoring incentives to the population being studied | G3_12: “If you go down to the Outpatient Department, where patients pay 5000 LL or 10 000LL to be seen and you tell them I will give you fifty dollars incentive, they will say yes I could use the fifty dollars. But if you come here to the private clinics and she is already paying 100$ to see me and you tell her you know what we are going to give an incentive of fifty dollars she will tell you I don’t care. You see what I mean?” |
Research interpersonal skills and physician endorsement to participate | Enhancing communication between principal investigators, research assistants and physicians | G3_01: “I think that the people who are actually engaged in the study should really sit together and talk and discuss it a bit more. We didn’t really get the chance to convey our opinion about the study and what is actually happening. Maybe field workers don’t really have the experience that other people have, but we are on the field and we encounter the obstacles and the challenges. It is us who are in contact with the participants. So maybe we are a bit more aware of what’s wrong on field. Because on paper it is not as nice as on field; it doesn’t go as smoothly as it should. So I think more often we should have more meeting with the people involved in the study to simply just discuss things in more details and probably come up with better solutions to boost a little bit more the recruitment.” |
Improving physician’s involvement in recruiting patients by flagging eligible patient’s record or sending frequent reminders about the study | G3_07: “It would good if they [nurses] put a yellow mark in order to know that this is potential case for the study” G3_10: “Emails would help as a constant reminder, yes it’s good that physicians could approach the patients as a starting point, so to be reminded whether by email or phone calls at times we can maybe call the physicians and just remind them” |