Adjustments to and innovations in the implementation of qualitative research with people with disabilities: the case of Bangladesh

ABSTRACT

Empowerment of people with disabilities is an important aspect of commitment to human rights and inclusive development. However, the tasks of reaching out and engaging with people with disabilities and gathering and articulating sensitively the lived experiences of people with disabilities who encounter multiple challenges – physical, social, and cultural – is anything but easy. These challenges are particularly daunting in Bangladesh, where disability is also taboo and often seen as a social and economic burden. Based on a four-year research project with people with disabilities in Bangladesh, the article highlights the challenges of reaching out and the adjustments and innovations that have been applied through qualitative research. The researcher employed a probe-reach-out-learn-and-apply-as-you-go approach, which included extensive networking, extreme sensitivity, extensive attention to the issues of dignity and health of the interviewees, continuous attention and adjustments to interview conditions, and to the researcher’s own emotions and health challenges during and following the interview phases.

KEYWORDS:

• People with disabilities
• people with disabilities in tradition-bound developing societies
• qualitative research
• innovations in research tools and processes
• Bangladesh

1. Introduction

In most societies, people with disabilities experience extreme marginalisation, more so in the low and middle-income countries in the Global South, where limited opportunities and prejudices disadvantage this group the most (Isaacson 2021; Jesus et al. 2020; Kavanagh et al. 2015; Sarker 2015; Sarker 2022b; Sarker, Shrestha, and Tamang 2022). In the Global South, people with disabilities face numerous challenges including limited access to basic services such as health, education, transportation, and financial and legal services, as well as social stigma, which makes them the most vulnerable people (World Health Organization 2011). As a result, people with disabilities, especially those who are in poverty and live in rural areas, lack the political agency to express their concerns and secure their basic human rights and, as a result, experience lower quality of life (Sarker 2022a; World Health Organization 2011).

Recent United Nations (UN) declarations such as the UN Convention on the Rights of Persons with Disabilities (UN 2006) and Goals 4, 8, and 11 of the UN Sustainable Development Goals (SDGs) have reaffirmed the commitment of the member states to treat people with disabilities not as object of pity nor charity, stating that they have same rights as all citizens and need empowerment (UN 2018).

1.1 Lack of credible data: a key challenge

One of the key challenges of the implementation of the recommendations of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) is the lack of accurate and reliable data on people with disabilities, especially qualitative data (United Nations 2018). In most countries, and more particularly in low and middle-income countries, there is a serious lack of qualitative data on the lived experiences of the people with disabilities. This article describes in detail the challenges, as well as the importance, of conducting qualitative research involving people with disabilities especially in tradition-bound developing countries such as Bangladesh.

2. Background

Bangladesh is a densely populated country where disability “is seen as curse”, which often contributes to the “social exclusion” of people with disabilities (Hussain 2021, 16), and thus, it is difficult to reach out, enter into dialogue with, and gather data from this socially and economically disadvantaged group.

Drawing upon the lessons of a four-year PhD research project (Sarker 2022a) that examined the relationships between microfinance and the economic and social empowerment of people with disabilities who are in poverty, this article illustrates some of the practical aspects of and innovations to methodological tools and methods that have the potential to improve the quality of research and reliability in data.

Although, methodologically, all qualitative research follows the same principles of empathy, ethics, and patience, it became evident during the course of the field study with people with disabilities, especially in Bangladesh, where people with disabilities first are difficult to reach out to, and second, rely on others to engage with outsiders, and more importantly, where disability is often regarded a taboo, the task of reaching out and engaging with people with disabilities is not just difficult but complex. Therefore, conduct of research with people with disabilities requires frequent adjustments to these tools, and involves greater preparedness, allowances for more lead periods, flexibility, and continuous on-site innovations and adaptations to the known tools and techniques of qualitative research.

2.1 Scoping the research

A three-stage research strategy was adopted: first, conduct a thorough desk-research process concerning the number and locations of the people with disabilities in Bangladesh; second, explore ways and institutional means to reach out, locate, and organise interviews with the target population both in urban and rural settings; third, conduct face-to-face interviews with the target population.

To identify and engage the target group, the principal researcher partnered with NGOs that worked with people with disabilities who are in poverty and “economically active”. The interviewees thus included the recipients of microfinance and, through a snowball technique, the reseacher reached out to those who had applied for but were unsuccessful in obtaining finance.

It is noteworthy that adoption by the government, including in Bangladesh, of the 2006 UNCRPD and 2015–2030 UN SDGs has resulted in special efforts being made to introduce policies and programs that have the potential to empower people with disabilities and mainstream them in the society. However, as mentioned before, reliable data on the lived experiences of people with disabilities are scarce and this is an impediment to the realisation of commitments to UNCRPD and the SDGs. This research has highlighted several key methodological issues for conducting research with and on people with disabilities in a more practical and reliable manner.

2.2 Absence of reliable disability data in Bangladesh

While the National Social Security Strategy of the Bangladesh Government (Government of the People’s Republic of Bangladesh 2015) demonstrates its clear commitment to work towards the promotion of an inclusive society where empowering and mainstreaming people with disabilities is one of its key agendas, the absence of credible and reliable data, especially qualitative data, renders the tasks of improving conditions for those with disabilities somewhat difficult.

Disability statistics in Bangladesh are limited and are mostly inaccurate. For example, some reports suggest that Bangladesh has one of the highest rates of disability in the world (Polu, Mong, and Nelson 2015) but different agencies provide different statistics on people with disabilities and, furthermore, it is also not uncommon for the same agency to report vastly different statistics.

2.3 Research opportunity

Given these challenges of inadequate data, this research, which was conducted in partnership with microfinance institutions that offered assistance to people with disabilities (both urban and rural) in Bangladesh, provided a perfect entry point to locate, engage, and conduct research with people with disabilities in Bangladesh. Indeed, the research succeeded in gaining insights into the "Dos and Don’ts" and in innovating tools and methods that broadened knowledge in rhe management of qualitative research involving people with disabilities.

3. Literature review on research on people with disabilities

Research and information on qualitative research involving people with disabilities are rare, and particularly if they focus on the Global South (Singal 2010). As a result of limited and inadequate knowledge of, and limited skills in, conducting qualitative research on people with disabilities, many researchers end up gathering limited and/or incomplete information and thus possess a limited understanding of the target group (Amin et al. 2020; Banas et al. 2019).

Furthermore, while there are numerous generalised publications on the socio-economic status of people with disabilities, literature on the experiences of the research processes that are relevant to gathering the lived experiences of people with disabilities is rather limited, especially in the Global South (Becker et al. 2004; Sarker 2020; Singal 2010). This lack of practical experience in research and the consequent underrepresentation and/or misrepresentation of the issues of people with disabilities, and thus, the absence of their voices in policy discourse, means that the people with disabilities and their challenges fail to receive the attention they deserve, and thus end up being marginalised even more (Banas et al. 2019).

The small number of studies that exist reveal the numerous challenges encountered in conducting research with people with disabilities, and, among these, the most difficult of all, especially in a tradition-bound society where disability is seen as a “curse”, is to find ways to locate, interact, and conduct research with the people with disabilities (Banas et al. 2019). Among many reasons for this, such as cultural barriers, one of the main reasons why locating people with disabilities is often difficult is because the data provided by government agencies are often inaccurate (Amin et al. 2020; Singal 2010). Even after successful location, the other challenge is to get the consent – an ethics requirement – of the people with disabilities to engage with outsiders. Furthermore, people with disabilities often lack the confidence to interact with outsiders and thus they require the assistance and consent of their caregivers/family members, which is both time consuming and cumbersome (Banas et al. 2019). As most social science researchers do not have skills in sign languages, communication with people with a communication disability and/or hearing impairment poses yet another major challenge. In addition, interviewing people with disabilities in the presence of caregivers, which is often a common practice, risks reliability in interviews (Amin et al. 2020). Finally, as conducting research with people with disabilities is a time-consuming activity, it is important that enough lead time is allowed, a practice that most researchers either do not plan or are reluctant to commit themselves to (Banas et al. 2019; Bryen 2016).

To overcome these challenges several researchers have developed and pursued multiple strategies. For example, researchers (Amin et al. 2020; Wickenden et al. 2021) in Bangladesh frequently used relevant caregivers to engage with research participants. Another strategy that researchers followed to interview people with intellectual disabilities was to simplify research questions in easy-to-read versions. Furthermore, research on people with disabilities warrants triangulation and engagement with numerous stakeholders and agencies (Amin et al. 2020). This paper, which involved in-depth field research with people with disabilities in Bangladesh, confirms some of these existing findings and shares several new experiences of conducting research on people with disabilities, especially in a tradition-bound developing country.

4. The research: setting, framework, processes, and findings

4.1 The setting and the research framework

The research setting involved, as an entry point, research into the lived experiences of a select group of people with disabilities who are “economically active” and in poverty, who have been the recipients of NGO microfinance programs, to conduct a pilot experiment into the economic and social empowerment of people with disabilities in Bangladesh through the delivery of small loans, assisting income-earning opportunities. Overall, the research framework included on-sight desk research, semi-structured interviews with 25 “economically active” people with disabilities who accessed microfinance, ten economically active people with disabilities who were refused microfinance, and, through the snowball technique, other people with disabilities who neither aspired to nor applied for the NGO microfinance assistance.

In terms of types of disabilities, the field study included people with different types of disabilities,such as those who had visual impairments, physical impairments, a communication disability, mental illness, intellectual disabilities, and people who had multiple disabilities. In terms of physical locations, interviewees were from both urban and rural areas. The research participants list is provided below (Table 1):

Table 1. Participant profiles.

Disability types	Numbers	Gender (Man/Woman)	Urban/rural area
Physical disability	15	9 men/6 women	6 from an urban/9 from a rural area
Visual impairment (e.g. blind)	11	7 men/4 women	9 from an urban/2 from a rural area
Multiple disabilities (physical disability, hearing impairment, mental illness, low vision, intellectual disability)	6	4 men/2 women	6 from a rural area
Communication disability	1	1 man	1 from a rural area
Mental illness	2	2 men	2 from a rural area

4.2 Sample selection strategy and inclusion/exclusion criteria

To achieve the purpose of the study that warranted the gathering of holistic data, this study followed both purposive and snowball sampling strategies. Palinkas et al. (2015, 1) stated that “purposeful sampling is widely used in qualitative research for the identification and selection of information-rich cases related to the phenomenon of interest”. This approach allowed the researcher to use judgement to select research participants who were deemed relevant for this study and thus to adopt the multi-stakeholders approach, which included groups such as microfinance institutions, community leaders, organisations for people with disabilities, and the target group: the people with disabilities.

The researcher also used snowball sampling to collect data. This sampling is “one of the most popular methods of sampling in qualitative research, central to which are the characteristics of networking and referral” (Parker, Scott, and Geddes 2019, 3). These two sampling strategies assisted the researcher to recruit participants in the interest of the research project.

This research limited its sample to people with disabilities who had received microfinance and those who had applied for but were refused microfinance. Based on two criteria, this research selected two NGOs and their project sites. The NGO selection was based first on their rural/urban coverage of the program, and second, on their working experience with people with disabilities.

4.3 Data analysis

This research utilised a qualitative content analysis to analyse data. Bengtsson (2016, 8) stated that “the purpose of content analysis is to organise and elicit meaning from the data collected and to draw realistic conclusions from it”. This is a research method that allows the researcher to interpret “the content of text data through the systematic classification process of coding and identifying themes or patterns” (Hsieh and Shannon 2005, 1278; cited in Sarker 2022b). The researcher read and reread all transcripts multiple times and identified codes and then the researcher organised those codes under appropriate themes. Thereafter, the emerged codes were compared to other codes. Lastly, the researcher identified the final themes for this study.

4.4 Research processes: locating, reaching out, contacting, and interacting and interviewing people with disabilities

As mentioned before, identifying, locating, and interviewing participants with disabilities in Bangladesh is not easy because, in Bangladesh, people with disabilities live in an economic, social, and cultural milieu that not only makes them the most disadvantaged and vulnerable group, but also the most ostracised, and thus the most invisible people in the society.

Presented below are the step-by-step processes involving initiatives taken and tools applied to forge partnerships; locate, reach out, and make contacts; and conduct interviews with people with disabilities. While these strategies varied from one location to the other, there were significant differences between urban and rural settings. The starting point for locating and contacting the interviewees involved partnerships with organisations, namely NGOs actively involved and working with people with disabilities.

4.4.1 Partnership with an intermediary, an NGO

In this regard, an NGO called Action on Disability and Development (ADD) International that worked with, and provided advocacy support to, people with disabilities in both urban and rural areas in Bangladesh was identified and partnered with to act as the intermediary between the research team (in this case, the principal author of this article) and the target population: the beneficiaries of ADD International in urban areas, particularly the slum areas of Dhaka, the capital of Bangladesh. In rural areas, the researcher forged partnerships with and sought the assistance of a microfinance institution, Thengamara Mohila Sabuj Sangha (TMSS), which is engaged in microfinance activities for people in poverty, including people with disabilities, in a remote, rural area of a district called Bogra, which is located in the Northern part of Bangladesh.

4.4.2 Locating people with disabilities: urban area

After extensive discussion with ADD International, contacts were made initially with three interviewees, recipients of NGO assistance, who lived in Dhaka, the capital city, and later, through the snowball technique, the researchers reached out to other interviewees. An important lesson in locating and reaching out to research participants, namely people with disabilities, is to forge partnerships with organisations that work with them and apply a snowball technique to expand the number of interviewees.

4.4.3 Locating people with disabilities: rural area

Given the cultural prejudices and stigma that make people with disabilities “invisible” in rural areas, rural participants were somewhat less traceable and thus less contactable. Locating, contacting, and interviewing them in rural areas is far more challenging than for those in the city. Furthermore, unlike the cities where people with disabilities, especially those who are in poverty, live in clusters in slums, the people with disabilities in rural areas live in scattered locations, have less contact with people outside their homes, and thus are difficult to locate. It was only after TMSS, the NGO that undertook a program of microfinance for people with disabilities and conducted a survey to assess their number, locations, and conditions, that information about their presence and locations in the research area became known. Thus, it is imperative that extra efforts are needed to locate and reach out to people with disabilities and their families (Banas et al. 2019; Jenkin et al. 2015), especially in rural areas.

In this particular study, multiple measures, such as widening the network through microfinance staff, word of mouth, stakeholder contacts, and discussions, helped to locate and establish contacts with research interviewees. These processes entailed staying in the research site for an extended period. For example, as most people in rural areas do not have access to mobile telephones (Davidson and Santorelli 2009; Kane et al. 2009), the researcher worked through TMSS, the NGO, to establish contacts and make appointments with the interviewees. However, despite these multiple efforts, outcomes were mixed. For example, in one case, the principal author travelled to a respondent’s home in a rural area for an interview, only to discover that the family members were working in an agricultural field some distance away and thus the pre-organised interview could not be conducted. In another case, one research respondent completely forgot about the meeting and went to the local market, and thus was unavailable for the interview. On several occasions, the researcher often waited long hours before the interviewee/family members of interviewees returned home from their chores and participated in the interview.

The three key lessons drawn are as follows: (i) in tradition-bound societies, locating, contacting, and interviewing people with disabilities, especially in rural areas without using media that they trust, such as an NGO that they benefit from, is difficult; (ii) interviews may often not proceed as planned and, therefore, patience, gentle reminders, and planning for contingencies are essential (Ho et al. 2018; Jenkin et al. 2015); and (iii) finally, informality and providing incentives are key to gaining trust and achieving congeniality in the interview process.

Furthermore, in terms of actually conducting the interviews, the researcher needs to be exceptionally empathetic and flexible, for example, (i) to meet with the participants and their family members or neighbours, if needed, several times (Jenkin et al. 2015); (ii) to adjust the interview time and date according to the interviewee’s date, time, health, and convenience (Goldsmith and Skirton 2015), and, where needed, interviews should be conducted over a number of days (Banas et al. 2019); (iii) unlike other qualitative research in which outsiders are discouraged from joining the interview, interviews with people with disabilities often requires the assistance of their family members and neighbours, which must be permitted and with provision for triangulation (Nind 2009; Whitehurst 2007); and, finally, (iv) in cases where the interviewees prefer to meet the researcher at the researcher’s place and not the interviewee’s home, travel costs must be reimbursed, and an honorarium may also be paid to compensate the interviewee for his/her time and labour (Nary, Froehlich-Grobe, and Aaronson 2011), and, moreover,, the choice of the location of the interview must be left at the discretion of the interviewee.

4.4.4 Interviewing and documentation of information

Due to their history of marginalisation and social exclusion, most people with disabilities tended to be hesitant to engage with people outside of their families. As a result, more lead time than usual was needed to develop rapport before the interviews (Nind 2009). The researcher initially interacted with the family members of the interviewees before the actual interviews. This necessitated several visits by the researcher to the homes of the interviewees. This was important to build rapport and make the interviewees feel comfortable. These visits and rapport building are essential exercises to explain in great detail the purpose and to prepare and make the interviewees fully committed to the interview.

However, it also became evident that, even with lengthy preparation, some interviewees demonstrated signs of nervousness and impatience, and became tired more easily. In some cases, as interviewees recounted their daily challenges, some became quite emotional and found it challenging to continue with the interview. For example, a woman interviewee (Saleha Khatun [pseudonym], aged 45, from a rural area) who had a hearing impairment, reported:

I have never participated in any interview, nobody visited me before; nobody asked me about my stories. I do not know how to tell you my experiences, I feel shy and nervous and quite anxious.

These examples highlight the importance of extra sensitivity to the physical and mental state of the interviewees, which warrants conducting interviews in intervals and allowing time for the interviewee to feel comfortable and gain in confidence.

4.4.5 “Kinship interviewees” and managing unsolicited onlookers/responders

Yet another key challenge of interviewing people with disabilities is screening the unsolicited responses of the family members and friends – the network of kin – who often join the interviewees. Although unsolicited, at times, the presence and participation of outsiders cannot be avoided, rather is a necessity. For example, during one of the interviews with a person with disability, a man with multiple disabilities became tired after 15 minutes and stopped talking. He then suggested that his mother answer the interview questions on his behalf, which she did, for about 10 minutes, and then the mother asked the wife of the respondent to answer the rest of the questions. As the wife started to answer the questions; one of the sisters of the principal interviewee joined in and interrupted the interview, and then she took over answering the questions. These are unwelcome but not unusual occurrences in conducting research with people with disabilities.

Interviewing people with a hearing impairment inevitably requires the involvement of other people to answer questions on their behalf. In one instance, it was difficult for the researcher to communicate with a woman participant who did not have any hearing-assistive device. As a result, the researcher had to speak loudly and, in the process, breached the code of conduct relating to privacy and confidentiality. However, to minimise ethical aberrations, the daughter of the principal interviewee was asked to act as an intermediary. While the presence of family members – the interviewee kin network – did play an important part in helping to gather important information from people with disabilities who were less confident and/or less physically and mentally prepared to engage meaningfully in the interview process, their participation sometimes did compromise the accuracy of the data gathered. In such cases, cross-checking data through triangulation is the only option.

In the urban area, however, the situation is a little different. Here, the challenge was that, as most people with disabilities who are in poverty tend to live in slums and in clusters, interviews could not be conducted on a one-to-one basis but needed to be conducted as a group, in which the respondents would often share the interview questions with their peers who would gather at the interview venue, and this often resulted in obtaining not spontaneous accounts of individual experiences but premediated and/or collusive answers. One way to overcome this challenge is by switching the order of the questions, which seems to help reduce premediated collusive answers to some extent, although the separation of the individual from the group responses was not always possible.

4.4.6 Misleading expectations

As most interviewees with disabilities were reached through the NGOs and had been the recipients of assistance from one of the NGOs, another challenge the researcher faced was that these interviews raised participant expectations that the interview would be followed by additional assistance, which often distorted answers to the research questions and this happened despite the researcher’s repeated reminders to the respondents and their family members throughout the interview process that there would be no financial or other benefits for participating in the research. The family members who often accompanied and joined the interviewees frequently skewed answers in a way that would enhance their potential to gain access to NGO assistance, such as microfinance or some other form of assistance. One way to overcome these challenges of misplaced expectations and distortions of data is through repeating the same question multiple times and from multiple angles until more reliable and expectation-free responses are obtained. An application triangulation method, through cross-checking with local NGOs and community members, also helped to mitigate data distortions and improve reliability.

4.4.7 The issue of the emotional wellbeing of the researcher

Another important issue was the emotional wellbeing of the researcher. Conducting this research has revealed to the principal author of this article that field research with people with disabilities in such impoverished conditions can be an exhausting task, both physically and emotionally. In this study, the researcher often became distressed by what he witnessed and experienced during the interview process. Listening repeatedly to the tales of misery, poverty, exclusion, abuse, and rejection was indeed heart breaking and stressful. Self-care on the researcher’s part, such as taking breaks between interviews, spending time in nature, connecting with the family, and follow-up support and counselling upon return from the field, was an important and necessary part of the exercise.

4.5 Reflexivity

Reflexivity by the researcher is an important aspect of qualitative research. In this particular research, it was fortuitous that both the researchers/authors are of Bangladeshi origin and thus their knowledge of culture, socio-economic conditions, politics, and the norms and values that influence and guide the everyday lives of people and their behaviours greatly helped the researchers to appreciate the contexts and the nuances which, in turn, helped them to gather data in a more sensitive and flexible manner and interpret the field data reasonably accurately. For outsiders, it is important to spend enough time in observing locally and undertaking background research prior to engaging in field research.

5. Summary of findings

The commitment to the realisation of the UNCRPD and SDGs concerning the rights of the people with disabilities, warrants the gathering of accurate data and, more importantly, the gathering of qualitative data, which helps create a better understanding of the lived experiences of people with disabilities and the design and implementation of suitable policies and programs that address their concerns accurately. This field research has revealed that while qualitative research is the most effective way to gather the lived experiences of people with disabilities in Bangladesh, continuous adjustments and innovations to the existing tools and techniques are a sin qua non.

As has been demonstrated and confirmed by others, these adjustments and innovations include aspects that comprise, among other things, time spared and efforts made to forge partnerships and build networks, and to reach out and establish contact with the respondents (Amin et al. 2020; Banas et al. 2019; Becker et al. 2004; Singal 2010); flexibility, adaptability, patience, and creativity in the application of research tools and techniques (Stevenson 2010); and ethical considerations, including sensitivity to and protection of the emotional and physical wellbeing of both the research respondents and the researcher (Anderson et al. 2018).

Finally, regardless of efforts that are made to bridge the power gap between the researcher and the respondents (who in all aspects are more disadvantaged than the researcher), these will be difficult to eliminate (Banas et al. 2019), and, thus, the onus is on the researcher do everything he/she can to remove fear, build trust, and, to the extent possible, be on par with the respondent. As Watharow and Wayland (2022, 4) note, the vast heterogeneity and complex living realities of people “cannot be garnered simply with extensive reading, nor are lived experience researchers able to claim full prior knowledge. Own experiences are individual and not emblematic of the whole scope of diversities within the disparate communities and outliers.” Constant self and other awareness and adoption of reflexive practices, humility, investment in the development of trust, and generosity of time are key to gathering reliable data in research involving people with disabilities in a developing country setting (Isaacson 2021).

6. Conclusions

The aim of this article has been to address the gap in the existing literature and contribute to the body of knowledge on conducting qualitative research with people with disabilities. It is conceivable that by directly participating in field research over a long period, and by documenting the lessons of challenges and the joys of reaching out, as well as contacting and gathering for a study that involved the documentation of the lived experiences of people with disabilities in a developing society, this paper may have successfully highlighted the research challenges and the innovations and adjustments to tools and techniques that are necessary in qualitative research involving the target group.

The article has indeed illustrated a number of innovations, such as long preparation; preliminary knowledge gathering; observations; partnerships with relevant institutions; empathy, patience, and adjustments to the research processes; advance preparation; provisions for addressing the health needs of the target population; trust building with the respondents, the family members, and the community; management of unexpected eventualities; and continuous adjustments to the tools and methods that are key to successfully conducting research with people with disabilities (Coons and Watson 2013; Jenkin et al. 2015; Lloyd, Gatherer, and Kalsy 2006). Continuous triangulation is yet another key aspect to ensure rigour, information flow, and reliability of the data gathered. In addition, the provision for the post-research trauma management of both the researcher and research participants is another essential aspect of qualitative research with people with disabilities. Finally, research with people with disabilities is complex and time consuming but the outcome of a successful project is immensely rewarding and forward looking.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This research was funded by the Australian Government Research Training Program Scholarship.