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Overcoming Barriers in Conducting a 
Transatlantic Prostate Cancer Familial Study 
in Africa: Best Practice from the CaPTC 
Cohort Study 
Iya E. Bassey*1,2, Theophilus I. Ugbem1,2, Uwem O. Akpan1,2, Stanley O. Anyanwu1,2, Enakirerhi E. Glen 1,2, 
Rebecca M. Gali 1,3 , Catherine A. Oladoyinbo 1, 4, Abidemi Omonisi1,5, Getachew Dagne 1,6, Ernest T. 
Kaninjing1,8, Nissa A. Askins 1,7, Motolani E. Ogunsanya1,9 , Mohammed Faruk1, 10, Ademola A. Idowu1, 11, 
1CaPTC investigators, Folakemi T. Odedina 1,7 

1 Prostate Cancer Transatlantic Consortium 2 University of Calabar Calabar, Nigeria; 3 University of Maiduguri, 
Maiduguri, Nigeria; 4 Federal University of Agriculture, Abeokuta, Nigeria; 5 Ekiti State University, Nigeria; 6 University 
of South Florida, Florida, USA; 7 University of Florida, Florida, USA; 8Georgia & State University, Milledgeville, USA; 9 

University of Oklahoma Health Sciences Center, Oklahoma, USA; 10 Ahmadu Bello University, Zaria, Nigeria; 11 Ekiti 
State University Teaching Hospital, Ado-Ekiti, Nigeria 
*Corresponding author:  Iya Eze Bassey, email: iyantui@yahoo.com 
 

ABSTRACT 
Conducting prostate cancer research, especially prospective data collection in Africa, has numerous 
challenges. Some of the difficulties stem from socio-cultural factors that consider sensitive topics about 
men’s health as taboo. Our primary aim was to determine how to overcome barriers in conducting a 
transatlantic prostate cancer familial study in African males. Key research personnel of the CaPTC 
Transatlantic Prostate Cancer Familial Project were surveyed about their experiences in implementing 
the study. A mixed-method approach was used for the study analysis and data interpretation. The 
quantitative data from the survey was analyzed using SPSS version 18 while the qualitative data was 
analysed based on the principles of grounded theory for emerging themes. A total of 15 key study 
personnel responded to the survey. About 73% of the respondents reported that the participants 
requested a home or office visit rather than visit a data collection center. Eighty percent (80%) of the 
respondents reported that the participants had no preference for interviewer gender. The majority 
(80%) of the interviewers agreed that answers to questions about participants’ sexuality were most 
challenging to obtain, but with an in-depth explanation of the importance of the study and assurance 
of privacy, the answers were obtained. The best practice for engaging the community for research 
include community mobilization through sensitization visits and one-on-one talks, use of community 
‘gatekeepers’, introduction by relatives, assurance of privacy of health data obtained, the use of 
incentives and a promise to give feedback on the results of the study both on a personal and 
community level. 
KEYWORDS: Prostate cancer, community-engagement research, black men, Nigerian men. 

Citation: Bassey, et al. (2019) Overcoming Barriers in Conducting a Transatlantic Prostate Cancer Familial Study in 
Africa: Best Practice from the CaPTC Cohort Study. Cancer Health Disparities 4: e1-9. doi:10.9777/chd.2019.1001 

mailto:iyantui@yahoo.com


 
 
 
 
 

 
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INTRODUCTION 

In a typical African society, discussion of men's 
sexual health is not a common practice as most 
men feel very uncomfortable sharing sexual 
experiences with researchers. This may be 
attributed to the need to maintain social status, 
family respect, spiritual integrity and other cultural 
factors that men consider sensitive topics about 
men’s health as taboo (Olapade-Olaopa et al., 
2014). This, therefore, poses a significant challenge 
to conducting research on African men’s sexual 
and prostate health. 

Prostate cancer research in Africa is growing and 
has become multifaceted because it has become 
the number one cancer in men with increasing 
incidence and morbidity in Black men of African 
ancestry (Akinremi et al., 2011). Patients often 
present at a late stage with complications and an 
earlier age compared to several other ethnic 
groups (Akinremi et al., 2014). There are several 
unknowns about prostate cancer risk factors that 
are specific to Black Africans. Although some 
similarities have been documented between native 
African and United States (US) African-American 
men, there are also significant differences 
(Odedina et al., 2006). Still, there is a dearth of 
research data in Africa on prostate cancer (Okuku 
et al., 2016). So it has, therefore, become 
imperative that comprehensive research on 
prevention, early diagnosis, identification of 
behavioral risk and predisposing factors to 
prostate cancer as well as health-seeking 
behaviors of the African men be carried out. 

THE CAPTC TRANSATLANTIC PROSTATE 
CANCER FAMILIAL COHORT PROJECT 

In 2017, the Prostate Cancer Transatlantic 
Consortium (CaPTC), a US National Cancer 

Institute (NCI)-supported consortium, 
implemented the Transatlantic Prostate Cancer 
Familial Cohort Project. This ongoing project 
focuses on studying 2,000 West African men. The 
primary objective of the project is to explore the 
contributions of behavioral, environmental, and 
genetic factors in the etiology of prostate cancer 
among men of West African origin. 

The study design for the CaPTC West Africa 
Familial Cohort study was a cross-sectional 
prospective study design. Study participants were 
Black men of Nigerian or Cameroonian origin who 
lived in Nigeria, Cameroon, or the US. The 
inclusion criteria for the study were: men of West 
African origin regardless of a history of prostate 
cancer; between 35 and 70 years old; and men 
who provided consent to complete the study 
survey and provided saliva samples. Using flyers, 
the participants were recruited in different parts of 
the selected countries at some settings which 
included clinics, and wide-ranging community 
settings such as town hall meetings, eateries, 
churches, mosques, as well as health events. 

Before data collection, ethical clearance was 
obtained for each study site in Nigeria, Cameroon 
and the US. The coordinating center for the study 
was the University of Florida in USA. Participating 
institutions are Ahmadu Bello University, University 
of Calabar, Covenant University, Ekiti State 
University, Federal University of Agriculture 
Abeokuta, Lagos State University Teaching 
Hospital, University of Maiduguri, National Hospital 
Abuja, Ace Medicare Clinics Limited, University of 
Ilorin, and Lagos University Teaching Hospital in 
Nigeria. The participating institution in Cameroon 
was the University Hospital Center Yaounde in 
Cameroun. Written informed consent was 
obtained from all the eligible participants before 



 
 
 
 
 

 
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they were allowed to participate in the study. The 
participants completed the survey instrument by 
self-administration or were assisted by a research 
assistant using the study instrument. English, 
French or West Africa Pidgin English were the 
languages used to administer the survey. All 
participants were given an incentive of either a T-
shirt or a monetary incentive tailored to the study 
sites. 

Implementing this study at multiples sites, 
especially in West Africa, required overcoming 
several challenges. The specific aim of this study 
was to explore these challenges and determine 
best practices on how to overcome barriers in 
conducting a transatlantic prostate cancer familial 
study in West Africa. 

METHODOLOGY 

This project focused on developing best practices 
for conducting field research for prostate cancer in 
Africa. Thus, the study participants were the data 
collectors of the Transatlantic Prostate Cancer 
Familial Cohort project, including principal 
investigators, investigators, research coordinators 
and research assistants in Nigeria and Cameroon. 
A structured survey was developed by 
investigators to collect data from participants. The 
survey is provided in Appendix I. The items in the 
survey include: questions on sensitization visits and 
the methods used; the subjects preference for 
going to the data collection center for interviews 
or requesting for a personal visit; the average time 
it took to fill one questionnaire; participants 
preferences as pertained to interviewer gender; 
what questions the participants felt most 
uncomfortable answering; peculiar challenges the 
interviewers had while collecting data, how they 
overcame them, suggestions for best practices; 

interviewers suggestions for the best way to 
engage your community for research; and the best 
ways to appropriately disseminate results back to 
participants. 

The survey was administered on Qualtrics 
software. The link to the survey was sent to 
participants by email. The study data were 
analyzed using SPSS version 18. Descriptive 
analyses were used to summarize quantitative 
data. For the qualitative data, emerging themes 
were identified from the responses of participants. 

RESULTS 

A total of 15 key personnel participated in the 
study. They were from Ahmadu Bello University, 
University of Calabar, Covenant University, Ekiti 
State University, Federal University of Agriculture 
Abeokuta, University of Maiduguri and University 
of Ilorin. 

RESPONSES OF DATA COLLECTORS 
TO SURVEY QUESTIONS 

About 73% percent of the data collectors had to 
carry out pre-data collection sensitization visits. 
Seventy-three percent of the interviewers also 
reported that participants requested a home or 
office visit rather than visit a data collection center. 
The questionnaire required an average of two 
hours of personal interview. However, the 
respondents declared that participant incentives 
were well worth it. About 80% of the participants 
had no preference for interviewer gender. Results 
showed that 80% of the interviewers agreed that 
answers to questions about participants’ sexuality 
were most difficult to obtain, but with an in-depth 
explanation of the importance of the study and 
assurance of privacy, the answers were obtained. 
About 46% of the participants requested that their 



 
 
 
 
 

 
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results be typed and given to them personally, 21% 
requested results be sent as to them as text 
messages, while 26% requested general results of 
the study be made available to them in the form 
of booklets, flyers and orally in town hall meetings. 
The results are summarized in Table 1. 

Table 2 shows the challenges faced while 
collecting data and successful approaches used by 
the data collectors to overcome them. 

Complaints about the bulkiness of the 
questionnaire. 
This was the most frequent challenge reported by 
the data collectors (n = 6). Below are typical 
responses made by the respondents: 

“The clients complained of the time taken to 
respond to the questionnaires.” 

“There was difficulty in filling the questionnaire 
because of the volume.” 

This challenge was overcome by initial education 
about and an in-depth explanation of the 
importance of the study. Also, the use of incentives 
and assurance that the results will be 
communicated back to them both on a personal 
and community level also helped to overcome this 
challenge. 

Time taken to fill questionnaires 
This was another challenge reported by the data 
collectors (n = 4). This is exemplified by the 
statements below: 

“The clients complained of the time taken to 
respond to the questionnaires.” 

“Finding a time that works best for the participant 
given that it took about 2.5 hours on average to 

complete the survey”. 

Some of the measures taken to tackle this 
challenge included making the data collector’s 
schedule more flexible to allow for the 
convenience of the participants and sometimes 
the session had to be divided into 2 timeframes. 

Complaints about the personal nature of questions 
in the questionnaire. 
The personal nature of questions in the 
questionnaire posed a challenge to some data 
collectors (n = 2) as exemplified by these 
statements: 

“They also felt the questions were a bit too 
personal.” 

“The clients complained and said some of the 
questions are irrelevant.” 

Assurance of privacy of their health information as 
well as an emphasis on the importance of the 
study were some of the ways used to tackle this 
problem. 

Lack of knowledge of ancestral medical history 
One of the respondents complain about the 
participants “Lack of knowledge of ancestral 
medical history” as a setback, which resulted in 
longer time being spent. 

SUGGESTIONS FOR PRESENTATION OF 
RESULTS OBTAINED FROM THE STUDY 

Several of the respondents had different 
suggestions which included giving personal 
feedback either as typed reports or text messages 
delivered to them personally and confidentially by 
the data collectors as exemplified by these 
comments. 



 
 
 
 
 

 
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“The result should be disseminated back 
personally to the participants in the presence of a 

health professional.” 

“Phone numbers of the respondents through each 
respondent data collector.” 

“Ideally, the results should be typed and formally 
presented and reviewed with the clients by a 

medical expert, who can interpret the findings.” 

However, some also suggested that public 
feedback be given as booklets, flyers or oral 

communications through the community 
gatekeeper or town hall meetings as supported by 

these sample statements 

“Go back to those communities where you 
collected data, work with the community leader or 

gatekeeper who helped you gain access to 
participants and schedule a forum in which you 

can disseminate the outcome. Another alternative 
is to provide publication of the study to the 

community at large”.

Table 1. Responses of data collectors to survey questions. 
Variable  Response N (%) P-value 
Did you carry out sensitization visits? Yes 11(73.3)  

No 4(26.6) 0.012 
Participants choice of venue for data collection Data collection center 4(26.6)  

Home or office visit 11(73.3) 0.012 
Length of time for filling the questionnaire ≤2hrs 12(80)  

>2Hrs 3(20) 0.001 
Did participants have a preference or request 
for male interviewers? 

Yes 3(20)  
No 12(80) 0.001 

What questions did the participants find most 
difficult to answer in the questionnaire? 

Questions bordering on sexuality and 
history of sexually transmitted diseases 

14(93.3)  

No response 1(6.7) 0.0001 
What are your suggestions for presentation of 
results obtained from the study? 

Typed and personally delivered 
To be sent as text messages 
Results of the study should be available 
as booklets, flyers etc. 

7 (46.7) 
3 (20) 
4 (26) 

 

 
Table 2. Challenges faced while collecting data and successful approaches used by the data collectors to 
overcome them. 
Challenges (n) Successful approaches to overcome them 
Complaints about the bulkiness of the 
questionnaire (6) 

Initial education about and an in-depth explanation of the importance of 
the study 
Use of incentives. 
Assurance that the results will be communicated back to them both on a 
personal and community level. 

Time taken to fill questionnaires (4) The flexibility of the data collector’s schedule to allow for the 
convenience of the participants 
Sometimes the session had to be divided into 2 timeframes 



 
 
 
 
 

 
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Complaints about the personal nature of 
questions in the questionnaire  (2) 

Assurance of privacy of their health information. 

Lack of knowledge of ancestral medical 
history (1) 

Exercising patience while waiting for them to remember or confirm with 
other relatives 

 

DISCUSSION 

To overcome the initial resistance to recruitment and 
educate the participants about the benefits of the 
study, pre-data collection sensitization visits are 
necessary. This involves various approaches 
including one-on-one visits, rallies, group talks, 
distribution of flyers, and use of community 
‘gatekeepers’ as well as referrals by close relatives 
trusted by the participants. Neglecting to do this may 
result in apathy by prospective participants towards 
the study. This approach was found very useful by 
Woods et al. in their study. They noted that 53.1% of 
the participants in their study were recruited in 
community settings, whereas 46.9% were recruited in 
healthcare settings. They also reported that one-on-
one recruitment resulted in an immediate 100% 
increase in client contact and enrollment (Wood et 
al., 2004). A study by Enaworu and Khutan (2016) 
also stressed the importance of involvement of family 
members and friends as a contributing factor to 
them seeking medical advice; as informal support 
systems may be a critical part in the decision-making 
process of men (Jones et al. 2010). It is therefore 
important for researchers to understand the type of 
support networks that may influence African men’s 
decision to participate in this type of research. 

That most participants requested a home or office 
visit rather than visit a data collection center may 
have been due to the participants need for privacy 
or a need to avoid being labeled and probably 
stigmatized for identifying with a study involving the 
prostate. This finding is in concordance with findings 
by Barber et al., who studied the differences between 

black and white men regarding participation in 
prostate cancer screening and found out that black 
men were twice as likely to choose a private 
appointment over mass screening. They also 
observed that black men tended to participate in 
preventive activities when they received personal 
attention (Barber et al., 1998). 

The longer duration for a personal interview (about 
twice the time envisaged) actually constituted a 
major barrier during the study, and this may have 
been due to the time taken to explain the questions 
in the booklet as well as convincing the participants 
about the need to answer questions they felt were 
too personal. It was also observed that some of the 
participants had difficulties remembering ancestral 
medical history. Therefore, for future studies with 
similar aims to succeed, the data collectors might 
consider being more flexible about the place and 
time of data collection and personal interviews. The 
use of participant incentives may also encourage 
participation as participants in the study declared 
that incentives, though not the primary motivating 
factor, were worth the time taken for the personal 
interview. Woods et al., (2004) observed that 
changing to a more flexible schedule and the use of 
incentives resulted in a dramatic increase in 
subsequent enrollment. This was because it showed 
the participants that the researchers valued their 
input and time. 

Contrary to what has been reported in several 
health-related studies (Hinchliff et al. 2004; Witty et 
al., 2014; Hajizadeh et al., 2015; Knight et al., 2017), 
most of the participants had no preference for 



 
 
 
 
 

 
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interviewer gender. This may suggest 
progressiveness in how men view the role of female 
personnel in healthcare issues relating to men’s 
sexual health. The findings in our study are in 
concordance with those of another study in 
Botswana by Letshwenyo-Maruatona, (2017) who 
reported that gender is of minor importance 
compared with other characteristics such as 
competence and confidentiality. 

The difficulty in obtaining answers to questions about 
participants’ sexuality and sexual health is a 
confirmation that discussions of African men’s 
sexuality or sexual history are not common. This may 
be attributed to the need to maintain social status, 
family respect, spiritual integrity, and cultural factors 
that consider sensitive topics about men’s health as 
taboo (Olapade-Olaopa et al., 2014). 

From the observations made in the study by the data 
collectors, it would seem that getting the results back 
to the participants personally would be a more 
effective tool in recruitment rather than giving 
general feedback. 

CONCLUSION 

The Transatlantic Prostate Cancer Familial project 
study survey questionnaire is a very workable tool 
that has a high acceptance rate among participants. 
The best practice for engaging the community for 
research include community mobilization through 
sensitization visits and one-on-one talks, use of 
community ‘gatekeepers’, introduction by relatives, 
assurance of privacy of health data obtained, the use 
of incentives, and a promise to give feedback on the 
results of the study both on a personal and 
community level. 

 

Acknowledgments 
Funding support for this project was provided by 
the Prostate Cancer Transatlantic Consortium 
(CaPTC). 

 
Conflict of interest 
The authors declare that no competing or conflict of 
interests exist. The funders had no role in study 
design, writing of the manuscript, or decision to 
publish. 

 
Authors’ contributions 
Dr. Folakemi T. Odedina provided content and 
reviewed the final manuscript. Iya E. Bassey, Abidemi 
Omonisi, Theophilus I. Ugbem, Uwem O. Akpan, 
Stanley O. Anyanwu, Enakirerhi E. Glen, Catherine A. 
Oladoyinbo, Ernest T. Kaninjing Mohammed Faruk, 
Ademola A. Idowu wrote the initial draft. Getachew 
Dagne and Nissa A. Askins did the statistical data 
analysis. Ernest T. Kaninjing and Rebecca M. Gali 
reviewed the initial draft. Motolani E. Ogunsanya and 
Iya E, Bassey reviewed the initial draft and final 
manuscript. CaPTC investigators provided the data 
used in the study 

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Barber, K. R., Shaw, R., Folts, M., et al. (1998). Differences 
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Enaworu, O. U., & Khutan, R. (2016). Factors influencing 
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Odedina, F. T., Ogunbiyi, J. O., & Ukoli, F. A. M. (2006). Roots 
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SUPPLEMENTARY DATA 
APPENDIX I 
Questionnaire for Overcoming Barriers in 
Conducting a Transatlantic Prostate Cancer Familial 
Study in Africa: Best Practice from the CaPTC Cohort 
Study: To be answered by ALL Data collectors and 
Principal investigators 

1. Did you go on sensitization visits? Yes or no 

a. What places did you go to on sensitization 
visits 

b. Did you 

i. hold group talks 

ii. do a one-on-one sensitization 

iii. a combination of both? 

c. What factor(s) influenced the places visited 
for sensitization and recruitment of clients 

d. From your own point of view which of the 
recruitment method gave highest turnout 

2. Did the subjects prefer to come to the collection 
centre or did you have to go to their offices, 
homes or places of worship? 

3. How many people did you invite to your study 

a. How many refused outright to participate 

b. How many declined to participate after 
looking at the questionnaire 

i. What were their reasons for declining 

a. Lost interest 

b. Questions are too personal 

c. Questionnaire is time cosuming 

d. Other reasons 

c. How many have you fully recruited 

4. What is the average time it took to fill one 
questionnaire? 

5. Did they have any gender preferences for 
interviewers? 

• They preferred male interviewers 

• They preferred female interviewers 

• They had no gender preferences 

6. What questions did they feel most 
uncomfortable answering? Or what questions 
did they decline to answer most? 

7. What peculiar challenges did you have while 
collecting data 

a. how did you overcome those challenges? 

8. What are your suggestions for best practices? 

9. What are your suggestions for the best way to 
engage your community for research? 

10. What do you think is/are the best ways to 
appropriately disseminate results back to 
participants 


