Ethical Practices for Gaining Access for Research with Deaf Communities in South Africa: A Case of South African Sign Language

Abstract

Research ethics frameworks used in South Africa view Deafness from a biomedical perspective. Unfortunately, this could hinder research access to Deaf communities. Deaf-centric best practices draw from sociocultural perspectives instead. Motivated by this lack of Deaf-centric provisions for research with Deaf communities in the existing legal ethical frameworks in South Africa, this article examines best practices for gaining access to Deaf communities based on a broader study on South African Sign Language place names. The article synthesises ethical guidelines from literature and infuses them with the researchers’ own experiences during fieldwork of the broader study to come up with best practices. These include community engagement and collaborative partnerships, seeking ethics clearance; respecting conventions of the Deaf culture, and strategically managing discontent. We conclude that these best practices could form a foundation for a future research ethics framework that considers Deaf-centric practices.

Introduction

Social research with Deaf communities requires effective community engagement. This is important throughout the research process, but especially at the design stage of the study. Community buy-in is essential for meaningful research that contributes to the well-being of the community and simultaneously makes a valid scholarly contribution. However, gaining access to Deaf communities can be challenging for hearing researchers. There are various reasons for this, including the underlying paradigm through which the researchers view the Deaf community, a lack of trust, cultural and linguistic differences, differing frames of reference, and insufficient ethical and legal frameworks (Anderson et al., 2023; Crowe et al., 2022).

This article derives from a broader project entitled ‘‘Advancing South African Sign Language (SASL) for 4IR Technological Development Using Place Names’ conducted from March 2022 and anticipated to be published in June 2025. The project is funded by the Department of Sport, Arts and Culture (South Africa). It is collaboratively undertaken by the Department of South African Sign Languages and Deaf Studies and the Interdisciplinary Centre for Digital Futures (ICDF) at one university in South Africa. The project comprises the sociolinguistic component whose focus is to document the signed place names, their variations and to analyse the sociocultural variables that influence them. The other component uses technological innovations to convert the collected SASL place names to machine-readable data.

This article explores and synthesises strategies for gaining research access to Deaf communities based on previous literature and the authors’ own experiences gained mainly from the fieldwork of the broader project. The article was motivated by the lack of provisions for ethical research guidelines that are specific to Deaf communities in the existing legal ethical research frameworks in South Africa, resulting in researchers resorting to biomedical frameworks which often misinterpret deafness as a sickness. A literature review of existing research presents the general best practices for social research with Deaf communities. These are compared to our own ethical practices in the execution of the broader project. While the research is not yet mature enough to develop a definitive framework, standard practices for ethical engagement have been identified.

Positionality

It should be noted that the findings in this article are presented from the perspective of hearing researchers, but we maintain a sociocultural view of Deaf communities in all our scholarship about Deafness. The pilot study was successfully conducted by a Deaf staff member of the department. The staff member played an advisory role throughout the project but could not take part in the fieldwork owing to other work commitments. This prompted us to incorporate Deaf fieldworkers into our core-team. The three senior researchers have extensive experience of doing research with Deaf communities but outside South Africa and were in the process of learning and adapting to SASL. The four research assistants were all MA students in Deaf Studies, with different levels of SASL proficiency. Two of them were so fluent that they successfully served as SASL interpreters for the team. The Deaf fieldworkers at each site were introduced as members of the team responsible for asking and interpreting interview questions in SASL. Owing to the training, these fieldworkers understood the research rationale and methodology well and could explain it to the potential participants in SASL.

Materials and Methods

This article presents two data sources for analysis and synthesis; a literature review on the best practices for gaining access for research in Deaf communities; and the ethical strategies that we employed in our own fieldwork for the broader project. Therefore, our examination of the best practices for gaining access to Deaf communities is presented in two phases. In the first phase we explore them from the published literature and general legal ethical frameworks perspective. In the second phase we examine them within the context of how we adapted some and applied them to our fieldwork.

Best Practices from Literature Review

The article is framed within the sociocultural model as opposed to the biomedical or pathological model of Deafness. The sociocultural model views Deaf people as a sociocultural group or cultural and linguistic diversity while the biomedical model views them through the disability or impairment lens often leading to stereotypes such as audism (Krawczyk et al., 2024). Audism is a widespread form of discrimination based on the problematic assumption that deafness is an inferior mode of being relative to being able to hear (Skyer, 2023). The biomedical or pathological model views Deaf people as deficient or sick and in need of help to be treated of hearing impairment (Alde et al., 2025; Harris et al., 2009; McKee et al., 2013). The next section examines how the legal and ethical research frameworks used in South Africa view Deafness.

Legal and Ethical Research Frameworks Used in South Africa

Regarding the ethicality of research, there are several international and local legal and ethical frameworks that guide research with human participants in South Africa. Unfortunately, there are no protocols that specify guidelines for research with Deaf communities. For example, the 21-point Council for International Organisations of Medical Sciences (CIOMS) (2016) framework is seen as the most comprehensive international policy in ethical research hence has become the central theme in discourses about research ethics in recent years (Arellano et al. 2023; Krawczyk et al., 2024; Smith & Master, 2014). CIOMS (2016) justifies the use of health-related legal ethical research frameworks in social science research on the basis that there is no clear distinction between the ethics of social science research, behavioural studies, public health surveillance and the ethics of other research activities. Interestingly, this framework does not provide guidelines or insights on how to conduct research in Deaf communities. Instead, in Guideline 15 which covers engagement of vulnerable groups, it implicitly classifies Deaf people as vulnerable within the generic category of ‘people living with disabilities.’

Another commonly used framework is that of Emanuel et al. (2004) as evidenced by its wide referencing in literature (Tsoga-Gwegweni & Wassenaar, 2014). Mark (2014) describes this framework as inclusive arguing that it is universal and considers cultural contexts among other dimensions. However, its inclusivity and cultural adaptability also falls short of recognising Deaf communities as unique linguistic and cultural minorities in need of additional safeguards to protect them from discrimination and stigmatisation on the basis of Deafness.

The National Health Research Ethics Council (NHREC) (2024) which is the main tool for guiding research with humans and animals in South Africa, posits that the guidelines contained in it speak broadly to health research but that they are to be used by researchers from all disciplines who involve human participants in their research. This suggests paucity of discipline-specific research ethics guidelines in the existing standard national frameworks which has resulted in some special interest groups categorised in ways that contradict their sociocultural belief systems.

For example, Section 3.2.8 frames Deaf people as people with hearing impairment without provision for the use of Sign Language and mediation through Sign Language interpretation services. In this section NHREC (2024 p. 40) states, ‘Recruitment strategies for research participation in general should be sensitive to the possibility that persons with visual, hearing or mobility impairments may wish to volunteer.’ This confirms that the guidelines frame Deaf people within a biomedical of pathological perspective.

Consequently, methods that are inaccessible to the Deaf have been used explaining why Deaf people are under-represented in research (Anderson et al., 2020; Krawczyk et al., 2024). According to Smith and Master (2014), this under-representation of minority communities in research is often caused by mistrust and language barriers. For Deaf participants, the situation is exacerbated by discrimination and stereotypes arising from attribution of Deafness to disability, incapacitation, and vulnerability (Penn & de Andrade, 2017). However, new strategies of increasing participation of under-representation of minority groups in research are emerging in scholarship on ethics for conducting research in human communities. These strategies include community engagement, collaborative partnerships, use of incentives, logistical modifications and cultural and linguistic accommodations (Smith & Master, 2014).

Generally, NHREC (2024) has no further guidelines that explain how the needs of special interest groups such as Deaf communities could be accommodated within this framework. For example, although the framework calls for paying particular attention to language among other dimensions, it does not highlight the need for use of Sign Language and Deaf culturally relevant practices when dealing with Deaf participants.

Unlike other minority communities, Deaf communities use Sign Languages which are different from oral languages in that they are visual-spatial and manual in nature. Sign Languages use signs instead of words. This is evidence of differences between hearing and Deaf epistemologies (Cue et al., 2019; Skyer, 2023). Henceforth, this lack of reference to Sign Language limits the relevance of the legal and ethical frameworks to research with Deaf communities. In a way, the continued neglect of important cultural and linguistic factors in favour of the overly narrow description of the Deaf only according to hearing loss in framing deafness perpetuates a negative and inaccurate interpretation of research findings about Deaf communities (Alde et al., 2025; Pollard, 2019). Therefore, in their current state, the NHREC guidelines, just like the CIOMS (2016) and Emanuel et al. (2004) framework, reflect a disability-based understanding of deafness.

It is therefore more accurate and productive to reference Deaf communities in these frameworks, as marginalised sociocultural minorities with a unique language and culture and not frame them within disability categorisations (Krawczyk et al., 2024; Penn & de Andrade, 2017). Because of the uniqueness of Sign Languages, there is therefore a need for inclusion of guidelines specific to Deaf communities if these research ethics frameworks are to be overly relevant to research with Deaf communities.

Thomas and Dataday (2015) implore researchers to view Deaf communities as a ‘special linguistic demographic’. This calls for a special provision in the ethics frameworks on how Deaf participants, both within and without medical settings should be differently considered linguistically and culturally. Thus, existing frameworks need to be reviewed to include Deaf-centric provisions that align with the cultural aspirations and linguistic practices of the Deaf community. Nevertheless, the current NHREC (2024) guidelines are legally binding as provided for by Section 72 of the National Health Act (NHA) (2003) of South Africa. The NHA requires the NHREC to develop norms and standards for research with human participants. It is these norms and standards which inform researchers’ ethical responsibilities for gaining access to all communities in South Africa.

Researchers’ Ethical Responsibilities for Gaining Access to Deaf Communities

Research ethics frameworks were developed to address historical abuses and violations of the humanity of especially minority groups who were assumed to be vulnerable, readily available or easily expendable, such as prisoners and small ethnic and linguistic communities (Penn & de Andrade, 2017; Smith & Master, 2014). Today, researchers are expected to be strictly conscious of their ethical responsibilities that ultimately facilitate the integrity and social value of research (Anderson et al., 2020). Executing appropriate ethical responsibilities is an essential strategy for gaining trust of and therefore access to Deaf communities. Gaining the trust of Deaf participants is the first step toward gaining access to Deaf communities (McKee et al., 2013). This trust is maintained through genuine lasting relations or prolonged engagement with the Deaf communities (Anderson et al., 2023). Consequently, without the trust of Deaf participants, it may be impossible to conduct credible research with Deaf communities.

Community Engagement and Collaborative Partnerships

CIOMS (2016), in Guideline 7, provides that, as a way of showing respect for the traditions and norms of especially minority and marginalised groups, researchers must fully engage the communities prior to the conduct of research. In rural settings, it is particularly important to start by engaging the local leadership. According to CIOMS, community engagement facilitates access to the community, ensures relevance and acceptability of the research, builds confidence and strengthens community ownership of the research. The benefits of community engagement, are empowerment of the local community, better access and implementation of the results, building trust and social relationships as well as scientific integrity and social value of the research (Wilkinson et al., 2023). Community engagement also minimizes risks while maximising the benefits of research, improves the researchers’ understanding of potential vulnerabilities and hence supports the consent process.

One of the strategic ways of engaging the community is by using gatekeepers from the community under study. For Singh and Wassenaar (2016), conscientious and well-informed negotiations with gatekeepers are required to honour the ethical obligation of conducting appropriate stakeholder engagement before and during research. Gatekeepers can initiate and help build collaborative networks to facilitate access to the community and to support the overall research process (Wilkinson et al., 2023). Thus, utilising community leadership, respected members of the community as gatekeepers for research can be a sure way of gaining trust of and access to deaf participants (Singleton et al., 2014). To overcome barriers to access, researchers are advised to be diligent in developing strong relationships with the Deaf community organisations and influential individuals and to choose gatekeepers who command trust among many Deaf community members (Harris et al., 2009).

It is important to engage gatekeepers because Deaf communities are unlikely to welcome hearing researchers, especially if they are strangers and they are not competent in Sign Language, unless they are in company of Deaf individuals who belong or are known to the community. Singleton et al. (2014, p 63) rightfully observe, ‘… coming from a history of “being studied” and misinterpreted, it is reasonable that many Deaf people are sceptical of hearing researchers …’ From the perspective of Deaf communities, using community members who are Deaf as gatekeepers serves to protect deaf citizens from unethical research practices (Singleton et al., 2017).

One of the key areas of focus in Emanuel et al. (2004)’ s framework is collaborative partnership which requires inclusion of relevant community representatives in the research to share responsibilities with the core team, hence ensure that the local context is respected (Tsoka-Gwegweni & Wassenaar, 2014). Within this context, it would be desirable to collaborate with deaf researchers in studies. This should be done with the understanding that deaf researchers have complained in previous studies that they are often treated as tokens not as partners and relegated to low status positions, causing them untold frustration (Boness, 2016; McGuire et al., 2021). So, hearing researchers have a responsibility of respecting and treating Deaf researchers as equals.

Collaborating with Deaf researchers ensures cultural and linguistic accuracy of the results and promotes a respectful attitude within the resultant cross-cultural interactions (Singleton et al., 2014). Alternatively, partnering with Deaf research assistants can be a valuable tool for gaining access to Deaf communities. Pollard (2019) implores that such partnerships facilitate trust between the research team and the Deaf community, ease communication, facilitate capacity building and therefore enrich the research team's potential to access the Deaf community, collect more credible data and derive valid conclusions (Boness, 2016). Such community engagement efforts are desirable at the design stage before even seeking ethics approval.

Ethics Approval

First, researchers who are interested in studying human participants should establish ties with the Deaf community even before seeking approval from a Research Ethics Committee (REC). Involvement of the community at the design stage where ideas for research are developed prior to formal ethical approval, can positively influence the direction of research design, methods, and outcomes (Hensman-Crook et al., 2024). The 8-point Emanuel et al. (2004) ethics framework provides that every research proposal on research with humans undergo independent review by a competent registered REC to protect the dignity and welfare of research participants and prevent unfair treatment and exploitation.

RECs hold researchers accountable to upholding professional and ethical standards that are tailor-made to the specific needs of the communities (Anderson et al., 2023; Singleton et al., 2017; Smith & Master, 2014). Thus, in applying for ethics approval, researchers have a responsibility to demonstrate that they were able to capture and report the needs, concerns, way of life and expectations of the targeted Deaf community. They should inform the REC about how they would handle these dynamics including explaining how they will gain access to the target Deaf community (CIOMS, 2016; NHREC, 2024).

The application should also include specification of the objectives of the study, the methods and strategies for employing fair and equitable research ethical procedures (Smith & Master, 2014). Such information is not only important to the REC but equips the researcher with a better understanding of the community and hence with strategies for gaining access. Gaining access to Deaf communities is best achieved through showing respect for Deaf-centric practices, community engagement and collaborative partnerships. RECs in South Africa are interested in whether adequate prior community engagement and collaborative partnerships with stakeholders were undertaken before they can issue an ethics certificate (Smith & Master, 2014).

Respecting Conventions of the Deaf Culture

Demonstrating genuine concern for the culture, language and betterment of Deaf communities in their diversity is a paramount ethical responsibility that holds researchers accountable to these communities. It is therefore incumbent upon researchers interested in gaining research access to Deaf communities to be respectful of Deafhood practices and to practise ethical inclusion (Krawczyk et al., 2024) by demonstrating standards of Deaf cultural awareness.

Lack of Deaf cultural awareness could lead to misunderstandings with the Deaf community and can serve as a barrier to access. Crowe et al. (2022) suggest that, to obtain access to Deaf communities, researchers should show respect for Deaf communities and not abide by their personal research interests alone. This is key to gaining the trust of Deaf participants and is demonstrated through being compassionate, being Deaf culturally sensitive and showing patience and appreciation of the participants (Anderson et al., 2023; Pollard, 2019). Therefore, hearing researchers should not only be keen on the novelty that characterise Deaf community research but should demonstrate genuine interest and passion for Deaf culture and Sign Language throughout their engagements with the community.

When the hearing researchers are not fluent in Sign Language, it is advisable that they use Sign Language interpreters for mediation and in addition show willingness to learn the language and culture of the targeted community. Hearing researchers are also expected to understand the social mores and norms of the Deaf culture, to respect the cultural traditions of the Deaf communities and to use culturally appropriate ethical strategies (Crowe et al., 2022; Singleton et al., 2014). Therefore, when seeking access to Deaf communities, researchers should consider ethical guidelines that are consistent with Deaf cultural and linguistic practices. CIOMS (2016) holds the research community accountable to the moral obligation of ensuring that research is conducted in ways that uphold human dignity, human rights and respect, protects and is fair to the participants and to the community.

One common unfair practice of research with Deaf communities is tokenism. Tokenism is the practice of including a small number of Deaf participants to make the research appear inclusive at the expense of considering the real needs of the Deaf community (Beckwith et al., 2016). It involves using responses of a few Deaf participants, usually known to the researchers, to represent the entire worldview of the Deaf community (Fox et al., 2025). This creates suspicions of partisanship among the other members of the Deaf community and has potential to intensify existing conflicts among community members and act as a barrier to the research process. For Singleton et al. (2014) tokenism also manifests when Deaf researchers are exploited but credit or ownership of their contributions is not adequately recognised. Overall, informed consent is one of the ways of showing respect to the participants.

Informed Consent Process

Arellano et al. (2023) conceptualise informed consent as a process in which a research participant is informed about the details of the study and any potential risks and benefits. The same authors say that for consent to be informed it must possess three key elements, that is, information, comprehension and voluntariness. This means that informed consent should be based on adequate accessible information and that each participant should arrive at a decision to participate having understood the implications and free of undue influence or coercion. Thus, informed consent together with fair participant recruitment and careful balance of risks and benefits are means to protect and ultimately respect participants (Smith & Master, 2014). Obtaining informed consent has become a central consideration in research ethics and policy and important strategy for gaining research access to communities. Anderson et al. (2020) implore that a potential starting point for addressing inaccessible research methods and mistrust of hearing researchers by the Deaf community is the careful reconsideration of the traditional informed consent process. This implies that, for an effective consent process, researchers need to attend to the unique needs of the Deaf.

A pre-consent information session or even a series of them needs to be arranged to facilitate the consent process. The key issues to be addressed in the information session(s) should guide the participants towards making voluntary informed decisions as to whether they will participate in the study or not. The information session should provide objectives, methods, risks and benefit, alternatives for undertaking the research, privacy and other rights such as autonomy (Tsoka-Gwegweni & Wassenaar, 2014; Smith & Master, 2014). The information should be transmitted in a non-coercive manner. Smith and Master further argue that the voluntary aspect of informed consent is the assurance that consent is deliberate and free of undue influence because undue influence is tantamount to coercion.

In the pre-consent information session, researchers should provide information on the rights of participants to autonomy to withdraw at any point from the study without any prejudice (Cosac do Santons, 2017). Consequently, the ethical justification for informed consent is linked to the respect for autonomy based on the idea that humans must be free (within reasonable limits) to act in accordance with their values and decisions (Brock, 2008). In addition, a risk-to-benefit analysis, that is, information on the benefits and potential risks associated with the study should be provided (Smith & Master, 2014). However, researchers are urged not to overstate the benefits as this may be tantamount to coercion.

To avoid overstating and coercion, the information should be complete, balanced, transparent and credible. Researchers who provide honest, complete, balanced, transparent and credible information about the activities of the research are more likely to gain the trust and respect of potential Deaf participants and to reach out to the community (Crowe et al., 2022). This explains why it is critical for the researchers to avoid deception of which deception entails misrepresenting facts and making false promises to entice participants to consent to participation (Wender, 2022). Penn and de Andrade (2017) believe that use of communication guidelines that misconceive deafness may limit the process of informed consent.

It is also incumbent upon every researcher to uphold the ethical principles of autonomy, anonymity, privacy, confidentiality and fidelity and to assure the participants how they will be observed. It is also essential to guarantee the safety and privacy of the participants (Singleton et al., 2014). Although all the participants of our main study were adults and not attending school, in the case of minors, such assurance facilitates parents or guardians to provide assent or proxy consent on their behalf (Paramasivam et al., 2021). Meanwhile, Arellano et al. (2023) opine that this does not exclude the child from actively participating in decision making as children may also assent and agree to participate in addition to the proxy of their legal representative. This is a long-standing point of contradiction in literature, though.

There are different ways to disseminate the pre-consent information to the Deaf community. One way is for researchers who are fluent in Sign Language and have knowledge of Deaf culture to share the information face-to-face (Crowe et al., 2022). The other way is to engage a competent Sign Language interpreter who is familiar with the local Sign Language nuances (Penn & de Andrade, 2017). Anderson et al. (2020) are concerned that researchers often fail to provide Sign Language interpreters resulting in communication barriers when the researchers are not fluent in the Sign Language of the participants.

In addition to face-to-face engagements and Sign Language interpretation, visual media such as videos, projectors, maps and pictures can be used (Anderson et al., 2020) to facilitate effective communication. When inappropriate communication strategies are used, Deaf participants experience communication barriers rendering the consent process ineffective (Anderson et al., 2020). In effect, the best method of conveying pre-consent information during the consent process is discussing the research aspects with the participants (Smith & Master, 2014).

Once the participants have understood the information, they are handed the consent forms. However, they should be allowed sufficient time to reflect and at times consult significant others before committing themselves (Arellano et al., 2023). For example, participants may be given a day to decide so that the researcher collects the signed consent forms the following day. While Arellano et al. believe that informed consent is obtained solely through writing, CIOMS (2016) declares that participants may consent by voluntary action, oral agreement or through signing a consent form. In our opinion, the first two options provided by CIOMS could be controversial in social science research and we suggest that they should be discouraged.

Incentives and Reimbursement

Although incentives are at times seen as inducement, some ethical guidelines do provide that researchers could offer incentives to promote recruitment and retention (Largent et al., 2022) particularly when they expect recruitment to be difficult. CIOMS (2016) provides for monetary and non-monetary incentives arguing that when the research poses low or no risk, providing compensation should not raise concerns about undue inducement. Inducement would occur when for example, undue influence is evident through offering large sums of money. Marais (2025) posits that the way in which incentives are offered should not unfairly influence the participant's decision about participating or not participating in the study.

On one hand, incentives may be offered in the form of cash or gift, airtime, shopping or food vouchers among others (Floyd, 2025; NHREC, 2024) to compensate for the time and inconvenience or to show appreciation of their participation. The rate for cash payments is calculated using the Time, Inconvenience and Expenses (TIE) method (South African Health Products Regulatory Authority (CIOMS, 2016; NHREC, 2024). This method considers the current hourly rate for unskilled labour regardless of whether the participant is employed or not. For Cheff (2018), acknowledging the contributions of the participants for their knowledge, time and experience has essential benefits towards credible research. However, using incentives should be clearly justified and proper recruitment strategies should still be employed. On the other hand, reimbursements are to cover any costs participants may have incurred to take part in the study because no research participant should incur costs for taking part in a study (CIOMS, 2016; Largent et al., 2022; NHREC, 2024).

Strategies for Gaining Access to Deaf Communities Employed During Fieldwork

For the larger study, we had five research sites in four different towns – one in the pilot study, and four sites in the extended research. Before collecting pilot and main study data, ethical clearance for each was issued by the university REC. The research design for the pilot study was developed together with a Deaf staff member, as well as a staff member who has been accepted into the Deaf community. The research team changed in the subsequent phase, and the research design was adapted and refined. However, the design of the pilot study which we coded Site 1, laid the foundation for ethical engagement with the Deaf community.

Our first strategy was to identify and engage gatekeepers with strong links to Deaf communities. We relied on the existing relationships our department as well as individual staff members had with the targeted Deaf communities. For the pilot study, the Deaf staff member acted as the gatekeeper as well as the fieldworker. In this case, the information session was hosted one-on-one, and participants were met individually at places of their convenience. For Sites 2, 3 and 5, principals of the schools for the Deaf served as gatekeepers and referred us to literate Deaf people whom we trained as fieldworkers. The Deaf people who were identified by each of the principals were engaged to recruit more Deaf participants. The schools for the Deaf were used as research sites for data collection. The preference to approach individuals linked to schools was done based on the understanding that Deaf communities tend to develop around special schools of the Deaf (Stander & McIlroy, 2017).

For Site 4, a staff member recommended a personal Deaf reference who acted as the gatekeeper and intermediary and was trained as a fieldworker. The Deaf person was used to recruit Deaf potential participants from the Deaf community. In this case it was more convenient for the group to meet the researchers on the university campus. In all the five cases, we communicated with the potential Deaf fieldworkers via videorised Teams meetings and WhatsApp calls that were mediated through SASL interpretation. Upon agreement, we provided them with information to promote our project. The information was in form of a pre-recorded video signed by a project assistant who is a child of deaf adults (CODA) and fluent in SASL. Informants were requested to disseminate the video and accompanying information face-to-face and through social media groups especially WhatsApp (the preferred medium of communication for the Deaf). In addition, they were asked to negotiate for a day and time convenient to the potential participants to attend the information session.

On the first day at each site, we started by training the Deaf informants as assistant fieldworkers. Thereafter, we conducted the information session using the pre-recorded signed video and oral presentation mediated through SASL interpretation. This was complimented by giving the participants the consent form with the same summarised but simplified information to read and reflect on overnight. This was to allow sufficient time for consultation and decision making. We started the information sessions at each site by introducing ourselves in SASL using both our written and sign names. We briefly shared our previous experiences with Deaf communities, as well as our varying competencies in SASL.

During the information session we explained the purpose and procedures of the study. We also explained the consent process and the rights and autonomy of the participants to choose to participate or not and even to withdraw at any stage of the project. Ethical issues of privacy, anonymity and confidentiality were explained and the safety of participants guaranteed. We also explained the benefits and potential risks of the study. The only potential risks were those related to loss of time such as loss of income or man hours and inconvenience.

Participants were given opportunity to ask questions and seek clarifications before they were issued with the consent forms to read overnight and to come back with them on the following day for signing if they decided to participate. This was done in duplicate so that they could keep a signed copy. One dominant question was whether the person in the introductory video was Deaf. Each time we pointed out that the person was a CODA, the participants nodded in approval. The other concern was the exclusive use of English on the written forms instead of a local language such as Sotho. Interviews were conducted after signing the consent forms.

The study was qualitative and used structured individual interviews and semi-structured group interviews to elicit SASL place names from the participants. In total 74 participants were recruited mainly through snowball sampling. Scholars such as Naderifar et al. (2017) justify the use of snowball sampling in terms for its ability to enable access to hidden or hard-to-reach populations and its potential to facilitate quicker location of participants.

The interviews were conducted with the assistance of the Deaf fieldworkers who were also native users of SASL. The rationale was that the participants would be more comfortable with a known, Deaf person and thereby provide more authentic responses. The main fundamental question for this paper is, ‘What ethical strategies are appropriate for gaining access for research in Deaf communities in South Africa?’

Results

The results of this paper were analysed using thematic analysis (Braun & Clarke, 2006). We organised the results into analytical themes constituting the key strategies we found to be effective in gaining access to Deaf communities in South Africa. Although deductive thematic analysis was the predominant analysis method, inductive thematic analysis was considered to capture some emerging interesting themes such as strategic management of discontent. We followed the stages of thematic analysis (Braun & Clarke, 2006). Familiarisation was the first stage of analysis as the authors sought understanding of the nuances about gaining research access to Deaf communities from literature and transcripts of the field notes. This was followed by generation of initial coding of data and converging the codes into themes from the common patterns (Dawadi, 2020). The eventual refined themes under which we present our results are engaging gatekeepers from the community, recruiting and partnering with Deaf fieldworkers, seeking ethics approval, respecting Deaf-centric cultural and linguistic practices, incentivisation of participants and strategic management of discontent. We propose these as potential best practices for gaining access to Deaf communities in South Africa.

Engaging Gatekeepers from the Community

We found that community engagement is the first crucial step towards gaining the trust of and hence gaining access to Deaf communities in South Africa. For us collaborating with gatekeepers from the community who are respected and have influential relationships within Deaf communities is an important strategy for gaining research access. We found that principals of Deaf schools, are well connected to Deaf communities around the schools and know about the whereabouts of potential Deaf fieldworkers yet engaging Deaf people and training them as fieldworkers resulted in the research team gaining immediate trust of the Deaf communities. This made access to the Deaf communities easy. In addition, we noticed the importance of prolonging the engagement to build sustainable relationship with the communities.

Recruiting and Partnering with Deaf Fieldworkers

Appointing Deaf members of the community as fieldworkers, giving them roles and partnering with them in the data collection process instilled confidence about the sincerity of the researchers. This was evidenced when some of the participants expressed gratitude to our team for skilling and appointing some of their own as opposed to previous research teams whom they labelled as only interested in fulfilling their own interests without genuine concern for the needs of the Deaf communities. This aligns with Smits et al. (2020)'s contention that people should be involved in research that concerns them hence the slogan, ‘Nothing about us without us.’

Respecting Deaf-Centric Cultural and Linguistic Practices

We established that Deaf-centric cultural and linguistic practices such as using appropriate communication strategies void of coercion was another key strategy for ensuring that Deaf participants made informed decisions about their participation in research. It became apparent that by using SASL, the team demonstrated its respect for Deaf community linguistic practices. Merely introducing ourselves using SASL, sharing our sign names and openly sharing our previous experiences with Deaf communities as well as showing interest for learning SASL was welcome by all the potential participants.

What further captured the interest of the participants was our patience to respond to all their concerns and allowing them enough time to decide whether to participate in the study or not. SASL interpretation facilitated their understanding of their own rights and roles and the roles of the study. It was essential for the Deaf fieldworkers to fully understand this as well, to convey it fully to the potential participants. We also learnt that effective communication is not only limited to the use of SASL per se but extends to being sensitive to the variations of the language and embracing visual media and technologies to clarify messages.

There were two interesting communication issues that dominated the concerns of the participants. Firstly, they questioned whether the person in the introductory video was Deaf. They were satisfied when we informed them that the person was a CODA but expressed that they would have preferred a Deaf person. From this experience we learned that, to ensure smoother access to Deaf communities, hearing researchers should prioritise Deaf people in videos for disseminating information that seeks access to the community. A CODA could suffice as an alternative, but a hearing people may only be used if they are well known for their knowledge of the local nuances of the language.

The second concern was that of using English as the exclusive written language. The participants questioned why the researchers did not embrace local written languages such as Sotho and Zulu too. For McKee et al. (2013) it is unfortunate that standard informed-consent processes generally rely on written English forms, which are mostly ineffective for many Deaf users. We saw this as an interesting niche in language policy and planning research, cognisant that many legal and ethical research frameworks for researching human participants direct that information should be provided in a language that is accessible to the potential participants (Anderson et al., 2020).

Strategic Management of Discontent

We learned that responding honestly to the concerns of the potential participants from the outset enables trust and acts as a springboard for gaining access to Deaf communities. For example, when the team was quizzed whether the person in the video was Deaf, we answered truthfully. If we had answered otherwise, then we were going to lose the trust of the participants because their query suggest that they had somehow already picked that the person was hearing. In two Deaf communities we were confronted with resistance from leaders of some local Deaf clubs who suspected that we were acting on behalf of other Deaf organisations or that we were interfering with their members even before we started fully engaging the community.

In one instance, the principal had referred us to the assumed Deaf informant, but the individual discouraged us from proceeding with the research arguing that access to the community was going to be impossible owing to previous encounters with researchers. In the other instance, the leader of the local Deaf club approached the informant and demanded that the research team report to their club. In both instances, we explicated that we were affiliated to a university permitted by law to conduct professional research which has nothing to do with the sociopolitical activities in the community. We emphasised that we were cleared by an established ERC to carry out the research but that we were available at the research site for engagement and clarification if anyone was not satisfied with our initial explanation. There are two important lessons that we learnt from these scenarios. Firstly, we learnt that when researchers seek access to Deaf communities they should never act as if they were activists or advocates. Secondly, when manging discontent, researchers should always be honest, instead of being deceptive in order to prevent controversy.

Incentivisation and Reimbursement

Research participants should not incur costs to partake in a study, and if they do, they should be reimbursed (Marais, 2025). We considered that Deaf communities often struggle with access to services and employment in ways that affect their socio-economic status. They often receive low income or are unemployed and have no income at all (Kim et al., 2018). In our view, making them lose time from economic or domestic engagement because of participation in a study only exacerbates their predicament. However, instead of using inducement we preferred compensation expressed as tokens of appreciation for their time and contributions.

At the end of each session, we issued grocery vouchers, refreshments and lunch packs and explained that it was a token of appreciation for their time and contributions to the study and not inducement. In addition, although many of the participants found their way to the research sites, we also provided transport to those who needed it. For example, one participant in one of the sites had mobility challenges necessitating us to provide transportation to and from the research site. The participants appreciated our gestures, and this increased their trust in the research team. Although we presented tokens of appreciation, future guidelines could consider compensation as opposed to inducement as a means of demonstrating genuine concern for the situation of Deaf and other so called vulnerable participants, otherwise the participants would feel exploited. New legal and ethics frameworks such as COIMS (2016) and NHREC (2024) support incentivisation of participants provided the rewards are within the limits of the guidelines.

Discussion

In general, we were received positively by the community. The recruitment rate was high. In effect, 100% of all the potential participants who attended our pre-consent information sessions participated in the broader study. Our strategies for informed consent received positive feedback. An additional factor is the nature of our study, which is essentially an appreciation of the cultural and linguistic value of signed place names. Potentially this celebratory research was a welcome diversion from research that usually focuses on challenges and biomedical issues experienced by Deaf communities.

From the results we conclude that, for researchers to gain access to Deaf communities, they need to reflect on their ethical responsibilities and accountabilities for credible research. They need to weigh their own research interests against their genuine concern for the interests and needs of the Deaf communities. In essence, the preconditions for gaining access to Deaf communities are associated with the researchers’ respect for the cultural and linguistic rights of the community.

Admission that the rich knowledge that we sought was possessed by the Deaf communities themselves was the major strategic reason behind engaging gatekeepers and partnering with Deaf fieldworkers from the host communities. It was also a way of demonstrating our trust in the potentialities of Deaf people and showcasing the social value of our project. While many researchers believe that gaining access to and conducting research in Deaf communities is difficult, our experience was different. We therefore submit that, given the right attitude, respect and recognition, Deaf people are readily willing to participate in research that is relevant to their collective needs. From these results, we recommend amendment of especially NHREC (2024) ethics framework to include guidelines that address the specific needs of Deaf communities. Future research could explore participation of the Deaf community in the development of frameworks that are all-inclusive of their needs.

Research Agenda

Since this manuscript derives from a SASL place-name project, as part of our research agenda, the initial focus was to establish and propose best ethical practices for gaining research access to Deaf communities. Gaining research access to Deaf communities is not always easy for hearing researchers (Krawczyk et al., 2024; Singleton et al., 2017). In the context of the main project, successful research access to Deaf communities of South Africa is likely to accelerate the SASL place-name corpus. In the short term, our goal is to contribute towards literature on protocols for studying Deaf communities in South Africa. In the medium to long term, we envisage to develop and propose Deaf-centric guidelines for researching Deaf communities with the ultimate mission of contributing towards an additional subsection of the South African NHREC (2024) guidelines so that they are more inclusive of Deaf people.

Best Practices

Research ethics guidelines should have specific sub-sections about research with Deaf communities since Deaf people use Sign Language and practice Deaf culture which are unique and different from those of hearing communities. Community engagement is the first step towards gaining access to Deaf communities but should be done with the needs and practices of Deaf people in mind. It should therefore be prioritised before seeking ethics clearance and hearing researchers need to engage in honest partnerships with Deaf stakeholders and collaborate with Deaf researchers to ensure culturally accurate results. Use of gatekeepers who are respected by the Deaf communities is a crucial community engagement strategy. In addition, recruiting and engaging Deaf research assistants empowers Deaf communities, shows them respect and promotes the social value of research. Hearing researchers should be aware of and respect Deaf cultural practices. They should be fluent in Sign Language, otherwise they should engage competent Sign Language interpreters to mediate when they seek the consent of participants and when they conduct research in Deaf communities.

Educational Implications

Research in Deaf communities is a growing field which is increasingly attracting the attention of both seasoned and novice researchers across disciplines. This paper has potential to add to the scholarly knowledge required for ethical conduct of research in Deaf communities. It is likely to be of value in the training of particularly research assistants and novice researchers. For seasoned researchers, especially those venturing into research in Deaf communities for the first time, the paper could provide educational guidance enabling them to adapt to the new and unique ethical responsibilities. Overall, the paper could act as a medium of Deaf awareness to researchers and readers with minimum or no knowledge of the cultural and linguistic conventions of Deaf communities. Awareness of Deaf conventions including understanding of Deaf epistemologies among researchers is expected to translate to improved ethical conduct of research in Deaf communities.