Objectives: This article reflected on some methodological challenges and ethical concerns arising from conducting a sexual and reproductive health needs assessment with deaf people in Ghana. The aim was to provide some perspectives on some of the challenges associated with doing research with deaf people.

Method: The study was a two phase, sequential, mixed methods design, consisting of three focus groups to assist in the development of a survey and then the implementation of the survey for needs assessment data collection. The number of participants in the study was 179, consisting of 26 focus group participants: 7 executives of the Ghana National Association of the Deaf (GNAD), 10 male adults, and 9 female adults. There were 152 survey respondents (students, women and men) and one key informant. All participants, except the key informant, were deaf people.

Results: The application of traditional research methods to studies involving deaf participants presents numerous methodological and ethical dilemmas associated mainly with deaf people’s unique cultural and linguistic characteristics.

Conclusion: Research methods should not be taken as universal guidelines for conducting research in all settings because of differences in settings.

Governments and other stakeholders are increasing their efforts to alleviate the consequences of poor SRH for individuals, families and society at large. A major landmark in this endeavour was the Unites Nations sponsored conference on population and development in Cairo in 1994, where a common course of action was taken to find solutions to the problem (United Nations Department of Public Information 1995). In Ghana, the formulation of policies (e.g. the Ghana Population Policy, the Adolescents Reproductive Health Policy and the National HIV/AIDS and STI Policy), research to identify groups at high risk, poverty reduction, and increasing access to information are key government strategies to address SRH problems (Ghana Statistical Service, Noguchi Memorial Institute for Medical Research & ORC Macro 2004; Hessburg et al. 2007).

However, people who are deaf and hard of hearing are unlikely to benefit from policies and programmes intended to address SRH problems. Negative perceptions about deafness and lack of societal understanding of their concerns have contributed to the neglect of deaf people in SRH policies and service delivery (World Health Organization [WHO] 2009). For example, available data suggest that deaf people are more likely to face difficulties utilising common sources of information than their hearing counterparts (Fedorowicz 2006; Groce, Yousafzai & Maas 2007; Heyederick 2006; Roberts 2006; Wilson & Monaghan 2006). They encounter communication barriers in the healthcare system because healthcare providers typically cannot communicate with them (Mottram 1999). In addition, healthcare providers often underestimate the difficulties of speech reading and overestimate deaf people’s ability to understand written notes (Margellos-Anast et al. 2005).

The few studies conducted on deaf people in Ghana indicated that they have limited access to mainstream information, and thus, have limited knowledge on SRH issues (Poku 2008; Tsiboe-Darko 2008). However, these studies do not provide comprehensive SRH data directly relevant to the deaf community. The purpose of this study therefore was to complement knowledge generated by these studies to provide a better explanation of the SRH needs of the deaf population in Ghana.

In some western countries such as the USA, there are two main deaf cultural identities or perspectives: the medical, represented by a lowercase ‘d’, and the cultural or ethnic minority model, represented by a capitalised ‘D’. The distinction between d/Deaf formulation points to different perspectives of deaf individuals who are considered clinically deaf and those who are members of a linguistic-cultural group (Burch 2004; Padden & Humphries 2005). Deafness is perceived primarily in terms of the underlying medical pathology (Corker 1998; Tucker 1998). On the other hand, deaf people who subscribe to the cultural identity construction do not consider themselves as persons with disabilities and perceive deafness as a cultural phenomenon rather than a disability (Padden & Humphries 2005; Tucker 1998). The inability to hear, according to the cultural model, is essentially parallel to a hearing person’s ignorance of the sign language of the deaf community: a social disadvantage rather than a physical disability (Crouch 1997; Tucker 1998).

It should be noted that the distinction between ‘deaf’ and ‘Deaf’ identities is not so easy as it is a matter of perspective – there are deaf people who do not consider themselves part of Deaf culture and hearing people who do. Thus deafness is not a singular, monolithic entity; neither is it merely d/Deaf binary identities (Leigh 2009; Young & Hunt 2011). There are more substantial differences within the d/Deaf community than just the d/Deaf identities; for example, there are deaf people with varying degrees of hearing losses, fluency in sign language, literacy and level of integration in the community, all of whom have different life experiences and relate differently to their deafness (Leigh 2009; Young & Hunt 2011).

However, even though there are several ways of being deaf and several distinct deaf communities around the world, deaf people have many values in common, and these values are different from those of the hearing population. These differences have caused some people to question the appropriateness of applying traditional data collection methods, usually designed for the hearing population, in research with deaf people. Some researchers have suggested that research with deaf people should be considered cross-cultural. For example, Pollard (1992) argued that if it is acknowledged that there is the existence of a distinct deaf community and culture, which sometimes becomes the focus of research, then framing some research with deaf people as cross-cultural is appropriate.

This article is based on a SRH needs assessment with d/Deaf people in Ghana. The article discusses some of the critical issues and challenges involved in applying traditional research data collection methods and ethical principles in research involving deaf subjects. The intent is to provide insights into the possible challenges researchers working with d/Deaf subjects are likely to encounter if they ignore variability in the deaf community and presuppose a singular deaf identity. For the sake of convenience, the lowercase ‘deaf’ is used in this write-up.

Mixed methods research involves integrating two data collection techniques from two divergent research traditions in a single study. This approach presented opportunities for tapping the strengths of two methods, whilst at the same time compensating for their weaknesses. The qualitative component provides detailed perspectives or descriptions of processes, thus ensuring a better understanding of the phenomenon of interest, whilst the quantitative component highlights the potential causal mechanisms associated with a given outcome (Creswell & Plano Clark 2007; Curry, Nembhard & Bradle 2009).

Also, a mixed methods approach facilitates triangulation of data collected on the same issue, which often helps researchers develop a deeper understanding of the issue being investigated (Creswell & Plano Clark 2007). Triangulation allows the researcher to complement the differing strengths of quantitative and qualitative methods (Creswell & Plano Clark 2007).

Mixed methods research is therefore appropriate for investigating complex social problems that involve the needs of deprived communities. Issues concerning such communities are very complex and require research approaches that can contextualise and provide a comprehensive explanation of these issues. Data from multiple sources can help to provide a fuller understanding and to better interpret the results than relying on data from only one source. The complexity of SRH issues in Ghana presents similarly complex data collection and interpretation challenges, and thus makes mixed methods appropriate for this study.

Sample size was a function of the available resources, time constraints and the difficulty of locating deaf people. The latter factor was an important limitation since deaf people do not form a homogenous population and do not normally reside in clustered localities. In addition, recruitment was limited to those with formal education who were fluent in GSL.

Participants were recruited from two communities in Ghana, namely Tamale, a city in the Northern Zone, and Accra, in the Southern Zone of Ghana. The intent in selecting these communities was to sample respondents with diverse characteristics so that views from people with different perspectives on the topic could be represented. Tamale and Accra represent the Northern and Southern sectors of the country, which reflect important differences in culture and socio-economic development. The Northern sector is generally poor and characterised by poorly developed infrastructure and harsh climatic conditions as compared with the Southern sector (Berry 1995; National Population Council 2000). Specific locations where participants were recruited from the two cities were a senior high school for the deaf, churches for the deaf and a centre for the deaf.

Efforts were made to ensure that women were equally represented since young girls have been found to be more at risk for SRH problems than boys (National Population Council 2000). Of the students recruited from the senior high school, 44 were female, although female students constituted only 93 of the 343 student population. In the study, respondents from Accra and Tamale (aged 22 years and above) are referred to as the ‘adult population’ and those from the senior high school for the deaf (aged 18–22 years) as ‘students’ or ‘adolescents’.

Whilst focus group participants were recruited from two churches for the deaf and a centre for the deaf in Accra, recruitment of survey respondents was conducted in a high school for the deaf and three churches for the deaf. These locations were selected in order to increase the likelihood of identifying deaf people who had formal education and knowledge of GSL. Recruitment was done through announcements that included information about the study and eligibility requirements. Informed consent was obtained from all participants before recruitment.

With the focus groups, prospective participants were contacted through text messages and emails. Written scripts of the recruitment announcements were developed in English and signed in GSL at introductory meetings. After contacting prospective participants, arrangements were made to meet the men and the women at two different locations to discuss the focus group procedures, their remuneration, and issues concerning their privacy and confidentiality. Ten out of the 12 men contacted agreed to participate, whilst 9 out of the 15 women contacted agreed to participate. Seven of the 10 GNAD executives agreed to participate. The key informant was recruited from one of the SRH centres.

Recruitment of survey respondents was conducted through announcements that included information about the study, eligibility requirements, and an invitation to volunteers to undergo screening and the informed consent process at predetermined dates and times. On the screening day, those who qualified to participate were asked to sign the informed consent forms. In the high school for the deaf, verbal permission was sought from the head of the school before recruitment began, and a notice was sent to teachers and students about the study. Based on advice from GNAD, one key informant was interviewed to seek his views on his experiences working with deaf people. He also helped to clarify information gathered from the focus groups and survey. The key informant had done a study on HIV and AIDS with the deaf community so he was familiar with that community.

The focus group guide consisted of open-ended questions and elicited information on participants’ views concerning access to SRH services and information. Issues discussed were:

• sources of information
• knowledge of SRH problems in the deaf community
• SRH experiences and needs of deaf people
• ways to correct problems deaf people encounter when accessing information and services relating to SRH issues
• key related issues in the deaf community
• the role of GNAD in the provision of information and services relating to SRH issues.

Video tapes and audio recorders were used with participants’ permission to record proceedings in the focus group sessions. Whilst the men’s and the executives’ focus group sessions were conducted by a male research assistant, the women’s focus group session was conducted by a female research assistant. The researcher helped the assistants when probes were needed for clarification or when the discussions went off-topic. The men’s focus group session was the first to be conducted, followed by the women’s and then the executives’ sessions. Both the men’s and women’s focus group sessions were conducted on church premises whilst the executives’ was held at the GNAD head office.

The researcher and the research assistants were all native signers, so all focus group sessions were conducted in GSL. Being native signers and members of the deaf community in Ghana facilitated the establishment of rapport with the participants and created a comfortable environment to discuss issues relating to a sensitive topic in Ghana. In addition, resolving issues relating to the video recording of focus group participants and obtaining informed consent were made much easier by virtue of being members of the community.

The transcribed data from the three focus groups were analysed separately in order to differentiate the responses of the three categories of participants: leaders of the deaf community, male participants, and female participants. Focus group video tapes were converted to DVDs using Adobe Premiere Pro CS4 4.0.1 video software. Both the DVDs and the voice recordings were transcribed to text format.

The transcription of the data from the DVDs was done in two steps, namely ‘partial’ transcription and full transcription. The first step (‘partial’ transcription) involved viewing the DVDs from all the focus groups to identify and transcribe into text format concerns that were raised by participants. This was an abridged version of the discussions, consisting of only the group discussion material needed for the development of the survey. Since a verbatim transcription of the DVDs would require significant time and delay the development of the survey, an abbreviated procedure was employed. The second step was a ‘full’ transcription of the video tapes. The full transcription represented the data from the focus groups that were used to complement survey results from the final survey sample.

The issues included in the survey were problematic areas drawn from the literature and additional concerns identified in the analysis of the focus groups transcripts. The final survey explored issues relating to factors influencing visits to SRH centres, organisations providing SRH services, SRH problems amongst deaf people, sources of information on SRH issues, level of knowledge on STIs and pregnancy, contraception knowledge and use, and importance and satisfaction ratings of SRH issues and services.

Based on advice from the GNAD, all the survey interviews were conducted in groups with the exception of the Tamale participants, who were interviewed individually. Each interview session involved gathering participants in a single room, distributing surveys and providing instructions. Research staff provided assistance and answered questions. Some of the items were written on blackboards and flip charts, which made it easier to explain items to all the respondents at the same time. The survey was conducted by the researcher and his two research assistants in GSL.

Basic descriptive statistics were used to analyse and summarise the survey data. Responses to the survey items were entered into a Statistical Package for the Social Sciences (SPSS) data file, and cross-tabulations and chi-square statistics were computed to compare response differences across age and gender groups.

Findings of the study were consistent with previous evaluations of general disability in Ghana and show many similarities between the deaf community in Ghana and the general population regarding knowledge and practice of SRH issues – knowledge of SRH issues is high but practice is low (Ghana Statistical Service, Noguchi Memorial Institute for Medical Research & ORC Macro 2004). The study findings also corroborated findings from other studies which indicate that health professionals were unable to communicate effectively with their deaf clients, with a negative impact on the quality of healthcare (Margellos-Anast et al. 2005; Mottram 1999).

Whilst the main aim of the study was to provide information to guide policy development, programme design and service provision for the deaf community in Ghana, it also has important methodological and ethical implications for conducting research with deaf people. These include the suitability of applying traditional data collection methods such as focus groups and surveys in research with deaf respondents and issues concerning obtaining informed consent and protecting the privacy and confidentiality of participants. These issues are discussed in the following sections.

Related to the above is respondents’ difficulty reading and understanding survey items. It has been noted that when surveys are written in respondents’ second language, their ability to understand and respond accurately to the survey items in order to reflect their real opinion or attitude may be inhibited (Turner 1993). As such, understanding survey items written in English can be challenging for deaf respondents whose English reading skill is low. Indeed, many respondents in the current study had difficulties understanding the survey items. The low reading skills of respondents is compounded by the sensitive nature of SRH issues in the Ghanaian culture, as well as the fact that GSL has fewer concepts related to the topic; there are concepts in the English language that do not exist in the GSL, such as ‘infection/contract’, ‘symptoms’, ‘UID’, ‘implant’, ‘female sterilisation’, and ‘male sterilisation’. These semantic differences and the general low literacy level amongst participants made it difficult to communicate these concepts. These problems may have resulted in the mistranslation of some concepts and may have made understanding survey items difficult for some participants. Researchers writing survey items should therefore take into consideration the linguistic barriers and communication preferences of the deaf participants and ensure that options with regard to communication exist for all participants in the study.

There are therefore concerns about the appropriateness of using informed consent forms not written in the first language of the participants. Thus using informed consent forms written in English with deaf participants lead to some ethnical concerns. The current study used informed consent forms written in English; however, English is a second language for many deaf people. As a result, many of participants had difficulty understanding the informed consent forms. Consequently, informed consent in English may not be appropriate for some deaf subjects. Pollard (2002) observes that the low literacy level amongst deaf people can make it difficult for them to understand informed consent forms. Even the most accurate translation of the consent forms may still deprive some deaf people of vital information they need to make informed decisions about their involvement in a research study. Signing the informed consent form therefore does not necessarily imply that a deaf subject has made an informed decision to participate in the study (Pollard 2002). Overcoming these concerns require adopting options that are linguistically and culturally suitable for all deaf subjects.

The study findings indicated that the application of traditional research methods to studies involving deaf participants presents many methodological challenges, which include respondents’ inability to understand survey items, the best way of administering surveys to deaf respondents, and transcribing focus group video tapes. There were also ethical concerns relating to protecting the privacy and confidentially of participants and obtaining informed consent. In addition, there were challenges arising from misconceptions and the sensitive nature of SRH issues in the Ghanaian culture, the limited English reading skills of respondents, and the fact that Ghanaian sign language has fewer concepts relating to the topic of SRH. The study thus highlighted the methodological and ethical complexities in conducting SRH research with deaf people.

It should be noted that although the focus of the discussion was the deaf population in Ghana, the issues discussed extend beyond this population; the study has wider implications for research with deaf people in general. In order words, the study provides important background knowledge concerning the diversity of deaf identities and its implications, that is, how what it is to be deaf influences research and how it can complicate research with deaf people for many researchers, especially those unfamiliar with the nature of deaf identities. Finally, whilst efforts were made to avoid sweeping generalisations, it may happen, and therefore it is essential to acknowledge this limitation.

The significance of the study lies in alerting researchers about the importance of acknowledging the different ways of being deaf and how these influence research. Any research endeavour with deaf people that ignores the implications of diversity in the deaf community and the fluid deaf identity risks undermining the rigor and validity of the findings. Researchers should endeavour to establish good relationships with and acquire a good knowledge of the diverse groups in the deaf community. In this way, they will better understand the cultural values and the different categories of deaf identities.

Burch, S., 2004, Signs of resistance: American deaf cultural history, 1900 to World War II, New York University Press, New York.

Corker, M., 1998, Deaf and disabled or deafness and disabled?, Open University Press, Philadelphia. PMid:9604651

Creswell, J.W. & Plano Clark, V.L., 2007, Designing and conducting mixed methods research, Sage, Thousand Oaks.

Crouch, A.R., 1997, ‘Letting the deaf be deaf: Reconsidering the use of cochlear implants in prelingually deaf children’, The Hastings Center Report 27(4), 14–21, viewed 20 September 2008, from www.cinahl.com/cgi-bin/refsvc?jid=733&accno=1998009348

Curry, L.A., Nembhard, I.M. & Bradley, E.H., 2009, ‘Qualitative and mixed methods provide unique contributions to outcomes research’, Circulation 119, 1442–1452, viewed 12 June 2013, from http://circ.ahajournals.org/content/119/10/1442

Fedorowicz, S.C., 2006, ‘HIV/AIDS and the deaf community’, Deaf Worlds: International Journal of Deaf Studies 22(1), 197–221.

Ghana Statistical Service, Noguchi Memorial Institute for Medical Research & ORCMacro, 2004, Ghana demographic and health survey 2003, SS, NMIMR, and ORC Macro, Ghana.

Glasier, A., Gülmezoglu, A.M., Schmid, G.P., Moreno, C.G. & Van Look, P.F.A., 2006, ‘Sexual and reproductive health: A matter of life and death’, The Lancet 368(9547), 1595–1607, viewed 13 May 2010, from http://web.ebscohost.com.proxy.cc.uic.edu/ehost/pdfviewer/pdfviewer?vid=4&hid=106&sid=33d7cdc7-2990-44f4-a630-e3ebd231aa86%40sessionmgr114

Groce, N.E., Yousafzai, A.K. & Maas, V.D., 2007, ‘HIV/AIDS and disability: Differences in HIV/AIDS knowledge between deaf and hearing people in Nigeria’, Disability and Rehabilitation 26(5), 367–371, viewed 10 March 2008, from http://www.dcdd.nl/data/1204643548082_HIV%20and%20deaf%20Study%20in%20Nigeria1.pdf

Hessburg, L., Awusabo-Asare, K., Kumi-Kyereme, K., Nerquaye-Tetteh, J.O., Yankey, F., Biddlecom, A. et al., 2007, ‘Protecting the next generation in Ghana: New evidence on adolescent sexual and reproductive health needs’, in Guttmacher Institute, viewed 10 June 2009, from http://www.guttmacher.org/pubs/2007/11/13/PNG_Ghana.pdf

Heyederick, I., 2006, ‘HIV/AIDS and deafness in Flanders’, Deaf Worlds: International Journal of Deaf Studies 22(1), 194–196.

Ladd, P., 2003, Understanding deaf culture: In search of deafhood, Multilingual Matters, Clevedon.

Leigh, I.W., 2009, A lens on deaf identities: Perspectives on deafness, Oxford University Press, New York. http://dx.doi.org/10.1093/acprof:oso/9780195320664.001.0001

Margellos-Anast, H., Hedding, T., Perlman, T., Miller, L., Rodgers, R., Kivland, L. et al., 2005, ‘Standardized comprehensive health survey for use with deaf adults’, American Annals of the Deaf 150(4), 388–396, viewed 10 August 2008, from http://web.ebscohost.com.proxy.cc.uic.edu/ehost/pdfviewer/pdfviewer?vid=3&hid=25&sid=ffaeeb42-40ed-49d6-81e0-ecd946880168%40sessionmgr13

Mottram, V., 1999, ‘A community forgotten: Deaf people in health care’, Student British Medical Journal 2000(7), 394–436, viewed 30 September 2010, from http://archive.student.bmj.com/issues/99/10/life/380.php

National Population Council, 2000, Adolescent reproductive health policy, Ghana National Population Policy, Accra.

Padden, C. & Humphries, T., 2005, Inside deaf culture, Harvard University Press, Cambridge.

Pedroni, A.J. & Pimple, K.D., 2001, ‘A brief introduction to informed consent in research with human subjects’, in Scientist and Subjects, viewed 23 March 2012, from http://poynter.indiana.edu/sas/res/ic.pdf

Poku, K.A., 2008, Sexual and reproductive health status and HIV/AIDS and STI-related knowledge, attitude, and behaviors among persons with disabilities in Ghana, unpublished report, Ghana AIDS Commission.

Pollard, R.Q., 1992, ‘Cross-cultural research ethics in the conduct of deafness research’, Rehabilitation Psychology 37(2), 87–99, viewed 23 May 2010, from http://www.urmc.rochester.edu/ncdhr/documents/cross-cultural-ethics-in-the-deafness-research.pdf

Pollard, R.Q., 2002, ‘Ethical conduct in research involving deaf people’, in V.A. Gutman (ed.), Ethics in Mental Health and Deafness, pp. 162–178, Gallaudet University Press, Washington.

Roberts, G.S., 2006, ‘Sexuality and HIV/AIDS education among deaf and hard of hearing students’, Deaf Worlds: International Journal of Deaf Studies 22(1), 111–139.

Sparrow, R., 2005, ‘Deaf culture: The case of cochlear implants’, The Journal of Political Philosophy 13(2), 135–152, viewed 12 June 2009, from http://www.neiu.edu/~gmoreno1/Special_Education__Courses_with_Dr._Moreno/Module_Nine_files/ActivitySix.pdf

Tsiboe-Darko, I.A., 2008, HIV/AIDS baseline report, Ghana National Association of the Deaf, Accra.

Tucker, P.B., 1998, ‘Deaf culture, cochlear implants, and elective disability’, The Hastings Center Report 28(4), 6–14, viewed 14 March 2009, from http://findarticles.com/p/articles/mi_go2103/is_n4_v28/ai_n28711241/

Turner, J., 1993, ‘Using Likert scales in L2 research: Another researcher comments’, TESOL Quarterly 27(4), 736–739, viewed 12 April 2010, from http://www.jstor.org/pss/3587409

United Nations Department of Public Information, 1995, ICPD ‘94: Summary of the program of action, viewed 12 May 2009, from http://www.un.org/ecosocdev/geninfo/populatin/icpd.htm#intro

Wilson, A. & Monaghan, L., 2006, ‘HIV/AIDS and the Deaf community’, International Journal of Deaf Studies 22(1), 1–10.

World Health Organization, 2009, Promoting sexual and reproductive health for persons with disabilities WHO/UNFPA guidance note, viewed 19 June 2010, from http://www.unfpa.org/webdav/site/global/shared/documents/publications/2009/srh_for_disabilities.pdf

Young, A. & Hunt, R., 2011, ‘Research with d/Deaf people’, in National Institute of Health Research School for Social Care Research, viewed 06 January 2013, from http://www.sscr.nihr.ac.uk