Abstract
Background:
Assessment of ethical issues in sexual health research around the world shows that published studies are scattered and limited and cannot be used as reliable sources for other studies.Objectives:
This qualitative study aimed to explore the challenging experiences of sexual health researchers in Iran.Methods:
This study was conducted using a conventional qualitative content analysis method. Data were collected through in-depth individual interviews. The interviews were written and coded through conventional content analysis to form the initial categories.Results:
Based on the data analysis, three main categories, seven subcategories, and 14 second subcategories were extracted. The main categories included: 1- challenges related to biomedical research ethics committees, 2- challenges of sexual health researchers, and 3- challenges related to sexual health topics.Conclusions:
This study was carried out to provide a better understanding of the challenges of sexual health researchers in their studies. The importance of detecting these challenges empowered researchers to cope with the challenges during their study.Keywords
1. Background
Today, despite the abundance of knowledge in many scientific fields, it is necessary to identify how this knowledge has been acquired and how it can be applied in related fields. Annually, many studies are performed at high costs around the world to produce or exchange information (1, 2).
Although research on sexual issues is one of the basic requirements of a higher quality of life for most individuals in every society, lack of standard methods has resulted in the reluctance and inactivity of academic researchers and practitioners. This limitation is often attributed to cultural restrictions in the study of sensitive topics (3). Assessment of ethical issues during sexual health research around the world shows that published studies are scattered and limited in this area and cannot be used as reliable sources for other studies. In order to promote sexual health research, the associated challenges should be identified. The present study was designed to explore and highlight these challenges.
2. Objectives
This study was conducted using a qualitative approach to explore the challenging experiences of sexual health researchers in Iran.
3. Materials and Methods
In this qualitative research, the population consisted of individuals who could provide the greatest amount of information about the research question and objectives. The participants included experts of reproductive health, sex therapists, psychologists, members of biomedical research ethics committees, clergymen, epidemiologists (expert panel members), and public health researchers. The participants were selected through purposeful sampling.
Data were collected in individual, semi-structured, in-depth interviews. The researcher introduced herself and explained the objectives of the study in her first contact with each participant. After explaining the study objectives and the interview process, the researcher invited interested individuals to participate in the study. The time and place of the interviews were determined by the participants. In the interval between invitation to the study and interview, the researcher contacted the participants at regular intervals; the last reminding contact was made one day before the interview.
Before the start of the interview, besides obtaining the informed consent forms, a written consent was collected for audio recordings. Through a written commitment, the researchers ensured the participants that the interview audio files would be deleted after the end of the research, and no backup files would be saved. Also, the participants were assured that the audio files would be only heard by the researcher, and anonymous (coded) transcripts would be only checked by the research team. The interview was conducted using guide questions. The duration of the interviews varied from 30 to 70 minutes. The interview process was recorded using a voice recorder. Field notes were also taken during the interviews. Finally, after expressing gratitude to the participants, the researcher discussed the possibility of future interviews (4).
Data were analyzed using the content analysis method immediately after each interview. The analysis process was as follows: recording the interviews; repeated listening to the recorded files; transcription of audio files in the written format; sorting and adding field notes; extracting the semantic units or important parts of the text; studying the collected text to obtain a general idea of the content; independent encoding by two members of the research team and assessing compatibility; data classification based on the similarities of codes; and extraction of the main categories.
In order to ensure the rigor of data, maximum variations in information provision, age, gender, and occupation were considered. Various data collection methods and in-depth interviews were used to increase the reliability and accuracy of the results. Long-term involvement of the researcher with the participants and analysis of data led to a deeper understanding of the information. In order to increase data transferability, a description of the study location and selection method of the subjects and their characteristics, as well as a full description of the findings and quotes, was presented to the participants. In the following sections, the research process and all measures taken in the course of the study are described clearly, precisely, and purposefully to track the study path.
4. Results
Sixteen individuals, with an average age of 38 years and about four years of activity in sexual health research, were recruited. Nine participants were female and seven were male. Also, 10 participants were married, while six were single. Overall, three participants were reproductive health experts, three were PhD students of reproductive health, two were psychiatrists with experience in sexual health research, two were Master students of midwifery, one was a clinical psychologist, one was a public health expert, two were specialists in biomedical research ethics, one was a member of a biomedical research ethics committee, and one was a participant of sexual research.
According to the data analysis, three main categories, seven subcategories, and 14 secondary subcategories emerged. The main categories included: 1- challenges related to biomedical research ethics committees, 2- challenges of sexual health researchers, and 3- challenges related to sexual health topics. The subcategories included: issues of topic and proposal approval; evaluation process of sexual health proposals in research ethics committees; ensuring the accuracy of results; critical ability of sexual health researchers; understanding the participants’ rights; issues related to sexual health research topics; and sensitivity of sexual health research. The secondary subcategories are listed in Table 1.
Challenges of Sexual Health Research in Iran
Category | Subcategory | Second Subcategory |
---|---|---|
A) Challenges related to biomedical research ethics committees | ||
Issues of topic and proposal approval | - Absence of an expert point of view towards sexual health topics | |
- Lack of emotional and scientific support for researchers | ||
Evaluation process of sexual health proposals in research ethics committees | - Gender allocation failure in the selection of biomedical research ethics committee members | |
Ensuring the accuracy of results | - Localization of sexual health research tools | |
- Surveillance of the research process | ||
B) Challenges of sexual health researchers | ||
Critical ability of sexual health researchers | - Necessity of researchers’ scientific sexual health knowledge | |
- Necessity of sexual health researchers’ practical skills | ||
- Special personal/demographic characteristics of sexual health researchers | ||
Understanding the participants’ rights | - Importance of observing research ethics principles | |
- Importance of attention to the dignity of women and their families | ||
C) Challenges related to sexual health topics | ||
Issues related to sexual health research ideas | - Considering the transformation of society’s needs/problems as a source of ideas | |
Sensitivity of sexual health research | - Cultural, social, and religious sensitivities to sexual health research | |
- Topic/subject sensitivity in sexual health research | ||
- Possibility of self-censorship in sexual health research |
4.1. Challenges Related to Biomedical Research Ethics Committees
4.1.1. Issues of Topic and Proposal Approval
The participants considered academic approval of sexual health topics and proposals as one of the most challenging issues.
- Absence of an expert point of view towards sexual health topics
Almost all participants acknowledged that members of biomedical research ethics committees must have an expert point of view for the approval of sexual health topics and proposals. A reproductive health expert stated:
“...The viewpoint of members of biomedical research ethics committees is incredibly important in sexual health topics. Experts in sexual health should evaluate and decide about sexual health projects and their ethical approval, because they are well-informed about the goals and necessity of the project.”
- Lack of emotional and scientific support for researchers
Most participants experienced frustration and lack of motivation when starting or continuing a sexual health study due to the complexities of the approval process in some biomedical research ethic committees. Also, stigmatization by colleagues causes concerns and doubts among researchers and results in discouragement from sexual health research. In addition, some of the participants complained about the absence of scientific sexual references and lack of comprehensive and reliable information about sexual health status in Iran. In this regard, one of the PhD students in reproductive health stated:
“Unfortunately, most websites about sexual health are filtered, and we are banned from accessing relevant articles. Also, reference books in this field are scarce in Iran…”
Such statements indicate distress and fear of disrepute among most researchers, especially faculty members and university students.
4.1.2. Evaluation Process of Sexual Health Proposals in Research Ethics Committees
Most of the participants, who had experience in the field of sexual health research, noted numerous problems in the evaluation of research projects by some biomedical research ethics committees. In some cases, the research project was rejected entirely by the biomedical research ethics committee without any clear rational explanation. Also, in some cases, the evaluation process took a long time, thereby compromising the researcher’s professional status.
- Gender allocation failure in the selection of biomedical research ethics committee members
Most sexual health research projects are conducted by women on women, while in Iran, most members of the biomedical research ethics committees are men. In this regard, a former research ethics committee member stated:
“The presence of women in biomedical research ethics committees seems necessary in areas related to the health of women and families. However, in many of these committees, there are no women, or there is only one woman who is not empowered for her position most of the time.”
4.1.3. Ensuring the Accuracy of Results
The participants acknowledged the importance of sexual health findings and believed that doubts in the results could have irreversible effects on the community. This main category emerged from two subcategories: localization of sexual health research tools and surveillance of the research process.
- Localization of sexual health research tools
Some participants emphasized on the need to localize global standard tools, based on the context. For instance, a phenomenon, such as violence, may be considered a behavioral disorder in one country, while according to the cultural beliefs of another country, it may be considered a normal variation. Regarding the research tools, a specialist in biomedical research ethics commented:
“... A Western standard tool must be adapted to the context of our country. The original version may be inconsistent with the social, cultural, and religious context of our country; so, we cannot simply translate or copy it.”
This participant also insisted that domestic violence is a family issue and that researchers should not intervene or inquire about it, even if they can obtain written consent forms from family members.
- Surveillance of the research process
Most participants believed that the biomedical research ethics committees should monitor the implementation of ethical principles during the research. A PhD student of reproductive health stated:
“Research ethics in our country is neither seriously nor accurately considered; so, the biomedical research ethics committees have to be strict. Surveillance should not be only done at the beginning of the study, but must be continued throughout the study…”
4.2. Challenges of Sexual Health Researchers
4.2.1. Critical Ability of Sexual Health Researchers
- Necessity of researchers’ scientific sexual health knowledge
The participants acknowledged that sexual health researchers should receive sufficient updated training and have access to the latest relevant scientific achievements and resources. In this regard, a sexual health researcher stated:
“...It is important not to allow every researcher to carry out sexual health research. The researcher must be trained on how to ask questions, how to react, and even how to answer the questions. As sexual health topics are very sensitive, researchers should be careful. Therefore, the study design should be appropriate, and its implementation should be done accordingly.”
- Necessity of sexual health researchers’ practical skills
According to the participants, the required practical skills of sexual health researchers were diverse and substantial in different aspects. They considered some skills, such as communication and practical counseling abilities, as vital. In this regard, one of the researchers said:
“...The researchers should have information about the topic and the required skills. At least, they should have some experience as a research assistant in a research team; this shows that they have become qualified in team work and can study this domain.”
- Special personal/demographic characteristics of sexual health researchers
According to the participants, the personal characteristics of sexual health researchers can affect the ethical aspects of the findings. A limited number of participants emphasized that the involved researcher should be married and that age and gender compatibility between the participant and researcher is necessary. In this regard, a PhD student in reproductive health stated:
“...In my opinion, the researcher must be married. If I were a participant or a person experiencing sexual dysfunction, I would prefer to meet a married expert. If the researcher was single, I would probably feel that he/she cannot understand my sexual experiences. Age is also important to me. If the researcher was too young, I would again feel that he/she is not experienced enough and I cannot trust him/her.”
4.2.2. Understanding the Participants’ Rights
In the opinion of most participants, besides considering the ethical principles, the dignity of participants (mostly women), as well as their families, should be respected.
- Importance of observing the privacy, confidentiality, and beneficence of the participants
Similar to other studies on human subjects, privacy and confidentiality must be fully protected, and in particular, all aspects of security should be taken into consideration. Beneficence means that the advantages of the results should outweigh their disadvantages. In this regard, one of the sexual health researchers said:
“... In every research on human subjects, ethical principles and rights must be respected. The privacy, dignity, and security of the participants must be protected in all aspects. There must be guidelines to protect a person participating in any sensitive study.”
- Importance of attention to the dignity of women and families
The participants emphasized on the importance of sexual health researchers’ familiarity with the position of women in the family, their right to decide independently and freely to participate in sexual health or other sensitive research, and impact of research on women’s stance towards private issues. A reproductive health specialist stated:
“...Sexual health researchers need to know the position of women in the society and be aware of their independence and freedom in their transfer to the study setting, participation in the study, and giving information. They should be also cognizant of the honor of the family.”
Nevertheless, some of the participants paid more attention to women’s autonomy and did not find it necessary to obtain permission from their spouse for entering the research. In this regard, a reproductive health expert stated:
“...A woman as a free human being can express her opinion freely. There is no need for the husband to give his permission or consent for his wife’s participation in a study.”
On the other hand, other researchers highlighted the importance of family dignity in sexual health research. They recommended women to inform their husbands about their participation in the research, while getting permission was not considered necessary. A biomedical research ethics expert stated:
“...When discussing sexual health and reproductive health, the spouse should be also considered. In our culture and many Asian countries, family is very important; so, we have to be careful that the project does not disturb the family foundation.”
4. 3. Challenges Related to Sexual Health Topics
4.3.1. Issues Related to Sexual Health Research Topics
- Considering the transformation of society’s needs/problems as a source of ideas
The participants believed that sexual health researchers should be informed about the transformation of the community’s needs and priorities and design their research accordingly. In this regard, a reproductive health expert said:
“...A sexual health researcher should know the society’s problems and needs in the actual context.”
Also, regarding the innovative aspects of each research project, a sexual health researcher commented:
“... For a long time, I advised women about mostly contraceptive methods in family planning clinics, and I had a close relationship with these women. They talked about their sexual problems and concerns; so, this gave me an opportunity to design valuable research in this area.”
4.3.2. Sensitivity of Sexual Health Research
Most participants, who were sexual health researchers, stated that sexual research has special characteristics and is associated with social, religious, cultural, and thematic sensitivities. It also has certain restrictions including self-censorship by the participants or even researchers.
- Cultural, Social, and religious sensitivities in sexual health research
Most participants described the role of culture, society, and religion in their country and stated that researchers should have enough knowledge about the ethical and religious values, which are closely interlinked. In this regard, an ethical expert in medical research stated:
“...Religious teachings about sexual health and Islamic morals should be taken into account. The moral values of a Shiite society are integrated in the research, and there should not be any inconsistencies with the moral values of the society.”
- Topic/subject sensitivity in sexual health research
Use of ambiguous words with complicated and sometimes different meanings from the original word with a sexual connotation is a common malpractice by sexual health researchers to moderate the sensitivity of sexual health topics. In this regard, one of the sexual health researchers stated:
“...We replaced the word “partner” with “wife”, and some words were discarded, such as “sexual violence”, which was written as “reproductive health”. In addition, “prostitute” was replaced by “vulnerable women.”
- Possibility of self-censorship in sexual health research
Self-censorship in sexual health research is considered the most common and manageable experience of sexual health researchers. However, its effects on the study results cannot be completely discarded. In this regard, a sexual health researcher said:
“...Considering the privacy of participants and their opinions, they (participants) may unconsciously misguide the researcher. They may also describe false information; that is why researchers should be very careful.”
Moreover, researchers may censor some results, as they fear ethics committee judgments.
5. Discussion
According to the results, the most important challenges of Iranian sexual health researchers were related to issues, such as project approval, role of ethics committees, accuracy of results, researchers’ personal characteristics, individuals’ right to participate in the study, research ideas, and sensitivity of sexual health research.
Based on our findings, proposal approval was the most challenging experience of sexual health researchers. In our study, the necessity of a specialized ethical guideline in sexual health research was highlighted, as there are other specialized ethical guidelines for sensitive and challenging subjects, such as clinical trials, gamete and fetus, genetics, HIV infection, stem cells, tissues and organs, animal research, and research publication (5). In these cases, consulting experts and asking about their opinion seem necessary. However, in Iran, based on article II, clause II of the executive conformity regulations by the cabinet in 2001, “councils can invite non-voting experts to attend sensitive consultations”.
The fear of being labeled among researchers, who were involved in sexual health projects, was another source of tension and stress, which could result in educational and professional problems. An important problem which should be avoided by some biomedical ethics committees is the rejection of projects without a clear explanation. Generally, since women constitute the main target population of sexual health studies, there should be a high level of awareness, support, and understanding of their social identity and sexual rights in biomedical research ethics committees.
In Iran, according to article III of the National Code of Biomedical Research Ethics Committee, two leading national researchers (preferably one woman) should be included as members of the biomedical research ethics committees (6). The female researcher in the ethics committee should have a thorough understanding of women’s health issues in order to promote informed decision-making. In this regard, Amaro, Raj, and Reed found that the sexual health status of women in the society is directly affected by their decision-making status in the community (7).
Another aspect of sexual health research is validation of data collection tools with respect to the research context, since in this type of sensitive research, tools may be influenced by elements dependent on the context (6). One way to assess the quality and reliability of interventions in a study is surveillance of the research process. In a study conducted by Linnan and Steckler, both the involved institute and participants increasingly sought assurance of the high quality and accuracy of interventions and results (7). In another study by Elo et al. it was emphasized that all stages of a qualitative content analysis, including preparation, organization, and reporting, should be closely inspected (8).
Regarding the critical ability of sexual health researchers, our findings illustrated the importance of knowledge and adequate skills according to standard sexual health protocols and highlighted the need for a conservative approach to sexual issues in order to prevent any serious social sensitivity. In addition, researchers should avoid forming any unprofessional relationships with the participants, as it is an instance of abuse.
Although a number of participants stressed the necessity of being married for sexual health researchers, others did not have such a viewpoint. Considering the dominant culture and religion in Iran, gender of the sexual health researcher and the participant should be compatible, especially if deeper and more personal issues or long-term relationships are under exploration. Nevertheless, in scientific studies from different countries and even Iran, the role of gender in selecting sexual health researchers has not been reported.
It should be noted that in the proposed guideline for sexual health researchers by the World Association of Sexual Health (WAS), personal characteristics, including knowledge and specialized skills, have not been highlighted as major criteria. According to our findings, flexibility in choosing the researcher’s gender based on the participant’s preference while obtaining informed consents may improve their satisfaction. As Alty and Rodham believed, disclosure of sensitive issues, such as sexuality, can be strongly influenced by external factors, such as gender (9).
According to Noland’s expereinces, in research on sensitive topics, such as sexual issues, ethics committee members and other supervisors put excessive pressure on the researcher in order to protect the participants’ rights. Despite the fundamental responsibility of biomedical research ethics committees to protect vulnerable individuals, the question is whether only sensitive topics can make participants vulnerable. If this is true, some biomedical research ethics committees and other supervising institutes may create an imperialistic environment, compromising the academic freedom and disciplinary independence of researchers (10). In addition, our results shed more light on the integrity of women and families. Although there is no need for the spouse’s consent, if the results or process of the study influence him, obtaining consent is necessary.
Sexual health-related challenges included research sensitivities and necessity of observing different issues for research ideas. Social, cultural, religious, and thematic sensitivities, as well as self-censorship, are associated with sexual health research. According to the definition proposed by Sieber and Stanchly in 1988, sensitive research includes studies with potentially challenging outcomes for both the participants and researchers (11, 12). The important point about research on sensitive topics is substituting the common approach with special strategic solutions and methods (13). Also, self-censorship by the participants was due to their lack of confidence and the private nature of the issue. Lauritsen and Swicegood believed that although analysis did not accurately show which of the participants’ statements were more reliable, it might indicate the limitations of self-reported, data-based research regarding the stability of the results (14).
Another important issue, which should be considered by researchers, is the development of the research topic. The subject of a research project, especially a sensitive one, should be in accordance with the priorities, needs, problems, and rules of the society. It should fill the gaps, solve the problems, and follow the rules. An innovative idea can be not only related to the research subject, but also related to a new methodology. In this regard, Guse et al. believed that using the Internet in sexual research can reduce direct contact between the participants and researchers. Some new methods could decrease self-censorship in providing information (15). Also, in the process of developing a research idea, the researcher must carefully consider the practicability of the subject in the context.
Finally, it is worth mentioning that all the discussed characteristics of ethics committees may not be generalizable to other regional ethics committees or universities of Iran. Also, self-reported, data-based research is more susceptible to self-censorship bias.
5.1. Conclusion
This study was conducted to provide a better understanding of the challenges of sexual health researchers in their studies. The importance of detecting these challenges empowered researchers to cope with the challenges during their study. The researchers found that in order to present a proper solution, especially in sensitive research, it is necessary to pay attention to the existing challenges, culture, and complexities of each context and match them with the standard guidelines. Researchers who read the present article and similar studies are expected to anticipate the possible challenges and minimize the burden on themselves and the participants in order to make the sensitive process of sexual research easier. In addition, supervisors and involved institutes are expected to help and encourage researchers through providing the necessary emotional support and scientific resources.
Acknowledgements
References
-
1.
Ghanbarzadeh N, Nadjafi-Semnani M, Ghanbarzadeh MR, Nadjfai-Semnani A, Nadjfai-Semnani F. Female sexual dysfunction in Iran: study of prevalence and risk factors. Arch Gynecol Obstet. 2013;287(3):533-9. [PubMed ID: 23111907]. https://doi.org/10.1007/s00404-012-2604-z.
-
2.
Farhud D. [Academic ethics in education and research]. Ethics Sci Technol. 2010-2011;5(3-4):14. Persian.
-
3.
Khoei EM, Richters JW. Language of love in culture of silence: Socio-culturalcontextofIranian women's sexual understandings. Sydney; 2005. [Dissertation].
-
4.
Halcomb EJ, Gholizadeh L, DiGiacomo M, Phillips J, Davidson PM. Literature review: considerations in undertaking focus group research with culturally and linguistically diverse groups. J Clin Nurs. 2007;16(6):1000-11. [PubMed ID: 17518876]. https://doi.org/10.1111/j.1365-2702.2006.01760.x.
-
5.
Khodaparast AH, Zadeh AA, Rasekh M. [Critical review: Sextuplet guidelines of ethics in iranian research]. J Reprod Infertil. 2007:365-79. Persian.
-
6.
Kucukdeveci AA, Sahin H, Ataman S, Griffiths B, Tennant A. Issues in cross-cultural validity: example from the adaptation, reliability, and validity testing of a Turkish version of the Stanford Health Assessment Questionnaire. Arthritis Rheum. 2004;51(1):14-9. [PubMed ID: 14872450]. https://doi.org/10.1002/art.20091.
-
7.
Linnan L, Steckler A. Process evaluation for public health interventions and research. Jossey-Bass: San Francisco, California; 2002.
-
8.
Elo S, Kääriäinen M, Kanste O, Pölkki T, Utriainen K, Kyngäs H. Qualitative content analysis: A focus on trustworthiness. SAGE Open. 2014;4(1). https://doi.org/10.1177/2158244014522633.
-
9.
Alty A, Rodham K. The ouch! Factor: problems in conducting sensitive research. Qual Health Res. 1998;8(2):275-82. [PubMed ID: 10558333]. https://doi.org/10.1177/104973239800800210.
-
10.
Noland CM. Institutional barriers to research on sensitive topics: Case of sex communication research among university students. J Res Pract. 2012;8(1).
-
11.
Lee RM, Renzetti CM. The problems of researching sensitive topics:" An overview and introduction". Am Behav Sci. 2016;33(5):510-28. https://doi.org/10.1177/0002764290033005002.
-
12.
Ellsberg M, Heise L. Bearing witness: ethics in domestic violence research. Lancet. 2002;359(9317):1599-604. [PubMed ID: 12047984]. https://doi.org/10.1016/S0140-6736(02)08521-5.
-
13.
Elam G, Fenton KA. Researching sensitive issues and ethnicity: lessons from sexual health. Ethn Health. 2003;8(1):15-27. [PubMed ID: 12893582]. https://doi.org/10.1080/13557850303557.
-
14.
Lauritsen JL, Swicegood CG. The consistency of self-reported initiation of sexual activity. Fam Plann Perspect. 1997;29(5):215-21. [PubMed ID: 9323498]. https://doi.org/10.2307/2953398.
-
15.
Guse K, Levine D, Martins S, Lira A, Gaarde J, Westmorland W, et al. Interventions using new digital media to improve adolescent sexual health: a systematic review. J Adolesc Health. 2012;51(6):535-43. [PubMed ID: 23174462]. https://doi.org/10.1016/j.jadohealth.2012.03.014.