The research

A sequential explanatory mixed-methods study design was adopted to conduct this research where persons with any kind of disability were included as study participants. A mixed-methods design was embraced because this kind of design provides greater flexibility to draw a comprehensive conclusion based on the research findings. The independent institutional review board of BRAC James P Grant School of Public Health (JPGSPH), BRAC University comprehensively evaluated the study protocol especially the study design, study tools, consent form, procedures of enrolling participants, privacy and safeguarding of research participants and researchers, data confidentiality and storage and gave ethical approval (2018-044-IR) to it after they find everything satisfactory.

Even though the study comprise of both qualitative and quantitative components, this paper exclusively focuses on the challenges that researchers have faced during the quantitative part of the study.

Under the quantitative component, a cross-sectional nationwide survey was conducted among persons with disabilities covering whole Bangladesh. A minimum sample size of 5760 was determined to be appropriate to provide national and subnational (divisional) level estimates. However, researchers were able to collect data from 5000 persons with disabilities. The response rate for this survey was found to be 87.1%. The survey followed a multistage cluster sampling procedure for recruiting the respondents (all 12 types of persons with disabilities as per Bangladesh Government classification)12 from eight administrative divisions of Bangladesh. A brief summary of sample size calculation is provided in the online supplemental material.

All challenges discussed in this paper are based on personal experiences of the research team. To record the experience, the research assistants were given a set of nine open-ended questions to document the field challenges experienced by them during data collection. A total of eight field coordinators were responsible for cross-checking and assuring that the information provided by the research assistants were correct. Different strategies were adopted by the researchers to mitigate the challenges; series of group discussions have led the team to figure out the most effective mitigation strategies for each of the following mentioned challenges.

Development of tools

A comprehensive survey questionnaire was developed using validated tools from multiple sources, such as ‘Rapid Assessment of Disability’,13 ‘Household Income and Expenditure Survey’,8 ‘Asking Young People about Sexual and Reproductive Behaviours’14 and ‘The Washington Group of Questions’.15 Although the initial draft questionnaire was developed based on the validated tools and information from the literature review, the process of finalisation of drafted tools took couple of months and proved to be challenging. Different issues posed challenges during the development of tools and their translation to local language, such as certain etiquettes needed to be maintained and certain terms needed to be avoided while formulating the questions to ensure acceptability of the questions to the study respondents. For example, respondents were asked ‘Do you face any difficulty to perform your daily activities?’ instead of asking ‘What is wrong with you?’ A lot of consideration and thoughts had to be invested into generating questions around sensitive SRHR issues and subsequent modifications were done to make them culturally appropriate. For example, respondents were asked ‘Have you ever been to any romantic relationship?’ if yes then ‘Were you physically intimate in that relationship’ instead of directly asking ‘Did you have sex with your partner/lover?’ Here, asking direct question about sex or even using the word sex can be considered inappropriate because anything sexual count as a taboo topic in Bangladesh.

Given that most people with intellectual disabilities and those who have a severe impairment could not communicate themselves, the research team had to seek help from their identified caregivers to get responses of several questions. However, questions on knowledge and perceptions about different SRH issues were not asked to the caregivers as their perception or knowledge could not define the knowledge or perception of the respondents. Furthermore, questions on sensitive topics such as sexual desire, sexual dysfunction or sufferings from sexually transmitted diseases were not asked to the caregivers because this was not deemed to be ethically appropriate considering the fact that these are respondents own experiences, thoughts and feelings.

To mitigate the challenges, and to have stronger, comprehensive yet context sensitive tool, multiple visits were made to different government departments, disabled people’s organisation (DPOs) and non-governmental organisations (NGOs) to consult relevant staff who have substantial experience of working on disability and SRHR issues. These visits and consultations helped the research team better understand the etiquettes of asking questions to persons with disabilities along with how to facilitate discussions on sensitive SRH topics. Two brainstorming workshops with diverse stakeholders from government and non-government organisations (DPOs and NGOs) also helped the research team develop a strong insight about the gaps in the tools. For example, the research team learnt from the stakeholders that barriers to accessing SRH services for persons with disabilities can be of different types such as physical barriers (inaccessible hospitals and other healthcare facilities), attitudinal barriers (negative attitudes of healthcare providers, caregivers and family members regarding SRH of persons with disabilities), communication barriers (failure of healthcare providers to communicate and consult with persons with disabilities) and financial barriers (high cost of medicine and expensive health services). All these types of barriers were later incorporated in the tools as per their suggestion. Extensive feedback was also obtained from experienced researchers who have worked on disability and SRHR issues in Bangladesh and elsewhere.

Difficulty to reach the respondents and obtaining informed consent

To identify persons with disabilities, lists prepared through the Disability Detection Survey by Department of Social Services (DSS) and Ministry of Social Welfare (MoSW) of the Government of Bangladesh were used in this study.12 However, in the lists, comprehensive correct information of the registered persons with disabilities, for example: full address or contact information were sometimes missing, as these were not being updated regularly. In few data collection sites, researchers could obtain only a handwritten list which was 5 or 6 years old. As a repercussion, sometimes reaching a respondent in a locality became very difficult. To mitigate these challenges, the lists provided by the DSS, MoSW were cross-checked with local DPOs and necessary corrections were made.

After locating the respondents, gaining access to them in order to conduct interview almost always involved going through the gatekeepers or caregivers. A significant number of respondents were dependent on other family members for their livelihoods and for performing daily activities. Therefore, even though they are adult, they could not show the complete authority to take part in the study which led the research team to convince the gatekeeper or caregiver along with the person with disability for the consent. It involved an additional stage of providing the gatekeepers with all the detailed information about the study and rapport building.

Difficulty to maintain privacy

Maintaining privacy during the process of data collection was one of the major challenges encountered by the research team. As mentioned earlier, many of the study respondents rely on family members for performing daily tasks. For those respondents, the caregivers or family members were around most of the time and therefore the respondents did not have much privacy of their own. However, the sensitive nature of the study questions requires privacy and when the researchers used to request for a separate room or privacy, questions about their motive were raised by many of the family members or caregivers. As persons with disabilities are considered vulnerable to discrimination and abuse, often the family members did not feel comfortable to allow the researchers to talk to them privately.

To mitigate this challenge, interview process and the study objectives were explained to the parents/caregivers in detail and permission was sought to conduct interview in a private place. In order to ensure privacy and security of the respondents, researchers took extra precautionary measures. They used to change sensitive questions or skip those for some time, when any family members suddenly came too close or entered the room. For example, when the researcher was talking about sexual behaviour or experience of violence with the respondent and if he/she noticed that someone is coming to them or could hear them, they used to change the topic to something else such as rights of persons with disabilities. The researchers tried their best to ensure privacy and security of the respondents while collecting data from them. Almost all the interviews took place in private room and when a private room was not available, a safe place was identified as per respondent’s choice. Information related to experience of violence, the perpetrator(s), sufferings as a result of experiencing violence and coping strategies of the respondents were collected carefully maintaining proper privacy and confidentiality so that sharing this information does not pose any further challenges to the respondents as well as to the researchers. The researchers also provided additional information to the respondents about health and judicial support services in cases they ask for it.

Exploring sensitive sexual and reproductive health and rights issues

Discussing different aspects of sexuality such as sexual function, desire, satisfaction, sexual relationship and abuse are considered as taboo in the context of Bangladesh. People do not understand the necessity of sound SRH for overall well-being of a person. Stigma and superstitions surrounding the topic makes people uncomfortable to discuss about it. They had very minimal knowledge about SRH and displayed a very negative attitude towards it at times. As a repercussion, respondents were not comfortable opening up and used to hide their perceptions. In few of the data collection sites, respondents got offended when they were asked about their SRH. Moreover, several respondents were reluctant to share their history of abuse, no matter if it is verbal, emotional, physical or sexual. To overcome this challenge, the researchers built rapport and trust with the respondents to help them open up in sharing sensitive information. Besides, gender compatibility between the researchers and respondents was always maintained. Female researchers collected data from the female respondents and male researchers collected data from the male respondents. However, when the respondent was male but his caregiver was female, assistance from a female researcher was sought so that the caregiver feels comfortable talking about the SRH of the respondent. In addition to that, sometimes, researchers shared their own stories to make the respondents comfortable. Many a times, they had to give examples of different incidents surrounding sexuality or SRH to make the respondent understand about it. However, anyone uncomfortable or unwilling to disclose any information were not forced to do so.

Communication challenges

The major challenge experienced by the research team during data collection was communication difficulties in the form of interpreting verbal responses, lack of skills in sign languages when dealing with persons with sensory impairments and difficulties of the respondents to share their accurate view or perspective due to limited cognitive ability.

Persons with mild to moderate speech impairment or hearing impairment were interviewed with average level of difficulty; however, it was hard to interview persons with severe hearing or speech impairment. At least one researcher who knows universal sign language was present in every team to interview persons with hearing or speech impairment. However, it was found that, a majority of the respondents with hearing or speech impairment were not familiar with universal sign language. Instead, they communicate with personalise sign languages, which in most cases only the caregivers or close friends used to understand. There were instances where the respondents wanted to say something but could not express it properly due to communication barrier.

To mitigate this challenge, assistance from the caregivers were taken, in the presence of the respondents. Questions with dichotomous responses were asked to the respondents directly with the help of the caregivers. However, questions related to experience of violence and sexual behaviour were not asked to the respondents in front of the caregivers to ensure their safety and privacy. Furthermore, while interviewing persons with mild to moderate hearing impairment, researchers spoke loudly and slowly to allow sufficient time for the respondents to lip read. Furthermore, if a respondent was able to read but cannot communicate, they filled up their own questionnaire with the assistance of a researcher.

Many of the persons with intellectual disabilities who have mild or moderate level of impairment could take part in the interview process on their own. For interviewing them, simplified questions were used. Succinct instruction and concise explanation of all the questions were given to them so that they can provide appropriate response. Researchers also adopted informal methods such as gesture, symbol system and photographs to make them understand the questions. In addition, help from the caregivers was sought. Researchers used to help them understand a question first and then caregivers used to repeat it again in their own form of language so that appropriate response could be obtained. However, persons with severe intellectual disability were not interviewed as they could not understand the questions nor did they respond. Their different thinking process and understanding level would not allow them to think intensively about various critical aspects and many a time they replied, ‘I have never thought about it’. In such cases, the researchers relied on the caregivers. Nonetheless, sensitive questions related to experience of violence or sexual behaviour were not asked to the caregivers.