Reflections on Ethical Issues

In this section, I discuss my reflections in exercising the practice of ethical research in the particular socio-cultural context within which I conducted the study. Adopting the

transformative paradigm in disability research, I am aware that conducting ethical research practice involves complex considerations beyond meeting the basic ethical guidelines in qualitative research (e.g., informed consent, no deception, right to withdraw). As outlined in chapter 5 (Methodology), ethical research practice within the transformative paradigm is associated with commitment to human rights, social justice, cultural respect, and reciprocal relations between the researcher and the researched (Mertens, et al., 2011). By adopting this paradigm, researchers are expected to put these considerations into practice in every aspect of the research process, from the designing phase until the final presentation of the study. As such, developing a comprehensive examination of the ethical aspects of this study may require a discussion beyond the scope of this chapter. In the following section, I aim to

discuss ethical issues, which are specifically related to the data collection processes employed in my research.

Despite the availability of basic ethical guidelines, scholars have discussed that conducting ethical research often requires particular considerations, which are specific to the

context of the study and the characteristics of the participants (e.g., Giordano, O’Reilly, Taylor & Dogra, 2007; Guillemin & Gilam, 2004; Kaiser, 2009). The particularity of the context and the participants may generate dilemmatic situations, which raise certain ethical implications and therefore require the researcher to make more nuanced considerations in balancing the research agenda and the wellbeing of the participants (Guillemin & Gillam, 2004; Kaiser, 2004). These arguments were evident in my experience, particularly in relation to the issue of informed consent and respects for the autonomy of participants.

Informed consent implies the responsibility of a researcher to ensure the voluntary nature of the participants’ involvement in the research by providing them with adequate and honest information about the research so that the participants are able to make an informed decision to participate in the study (Corti, Day & Blackhouse, 2000). Conventionally, researchers provide signed informed consent forms as the evidence of the participants’ consent. At a glance, asking the participants to confirm their consent by providing their signature may seem as a straightforward procedure. Through my data collection experience, however, I learned that asking the participants to sign the informed consent form could sometimes be a complicated process due to the particular socio-political context of the study.

During the data collection process, I encountered the same situation as described by Novianti (2013) who also conducted a study in some local communities in Bantul District. Based on her research, which involved the participation of the 2006 earthquake survivors, she found that signed written forms were not always suitable for documenting the consent of the research participants. Novianti noted that using signed written forms might generate

problematic situations due to the negative experiences that some of her study participants had in the post-disaster context. During the post-disaster context, conflicting situations emerged in a number of villages due to the corruption and nepotism found to be present in aid

that such a socio-political context had resulted in some of her research participants tended to be suspicious when they were asked to signed a written form, as they were concerned that their consent might be misused to validate corrupt and damaging practices. Drawing on this experience, Novianti argued about the importance of having alternative methods to document the participants’ consent, which meet the preference and concerns of the participants.

I became aware of this issue through my conversation with a participant who shared her concern about what she perceived as unjust or unethical practices regarding how aid was being distributed among villagers by the village authorities. This conversation prompted me to be more cautious in communicating the purpose and rationale of asking the participants to provide evidence of their consent. Learning from Novianti’s (2013) study, I also discussed with the participants, the possibility of having another method to document their consent, including using verbal recording. Despite this, all of the participants agreed to provide written consent, which to some extent might be encouraged by my willingness to address the concern that the participants might have in regard to providing written consent.

A respect for participants’ autonomy was the second ethical issue through which I learned about the complexity of navigating the concept of ethical research practice. Giordano et al. (2007) discussed that the concept of respects for participants’ autonomy entails the responsibility of the researcher to respect the choices or preferences of the participants in regard to the terms and conditions of their participation in the study. Through the data collection process, I learned that adhering to this concept might generate a dilemmatic situation because meeting the participants’ preferences might be followed by the risk of compromising the other idealistic considerations that I aimed to achieve.

I gained practical exposure about this kind of dilemmatic situation in the context when I needed to balance between respecting the participants’ preferences on how they would like the interviews to be conducted and my concern about obtaining credible data. As argued by

Shenton (2004), one of the strategies that may generate credible data is by applying “tactics to help ensure honesty in informants” (p. 66). Drawing on this understanding, I expected that I could interviews the participants in a private place without the presence of other person to encourage the participants to talk openly about their experiences. During the data collection process, however, I learned that such an expectation might contradict the preference of some of the participants. Some of the participants indicated a preference to have their family member accompany them throughout the interview process, especially when I interviewed male participants. I was aware that such a preference was related to the social norms and expectation in Javanese culture, particularly in regard to the roles of gender in social interactions (Tickemayer & Pujiastuti, 2012). My commitment to respect the participants’ autonomy required me to take into consideration the participants’ preference for having their family member joining the interview process. Conversely, I was aware that the presence of their family member in the interview might create some barriers for the participants to be able to talk openly about their experiences.

Drawing on these experiences, I concur with Guillemin and Gillam (2004) who argue about the importance of having sensitivity in recognising and addressing “the everyday ethical issues that arise in the doing of research” (p. 263). Their arguments underline the

understanding that to conduct an ethical research practice is a situated process, which requires the researchers to be attuned to the wider social context in which the study is located.

6.7. Chapter Summary

In this chapter, I discuss the fieldwork process, methods I used to collect and analyse the data, as well as the description about the participants. I also explain the theoretical and practical assumptions, considerations and expectations that underline the deliberate choice of these methods. Guided by CGT, I choose strategies of data collection and data analysis, which

more readily enabled me to generate, situated and nuanced knowledge about the phenomenon being studied. The constructivist tradition also directed me toward strategies of data collection and analysis, which enabled me to emphasise the subjectivity of the participants. Furthermore, I included my reflections about the attempts that I made to contextualise the chosen method in the particular socio-cultural settings in which I conducted the study.

As a result of the data analysis, I generated two key conceptual categories that explain the overall findings of this current study as presented in the following two chapters. The first conceptual category (i.e., FPBD as a transformative incubator) is detailed in chapter 7, followed by the second conceptual category (i.e., FPDB as a mindset changer) which is discussed in chapter 8.

As illustrated in Figure 2, the two conceptual categories generated in the current study are not mutually exclusive, but are interconnected. The empowering processes and practices identified in the first conceptual category have produced the transformative outcomes described in the second conceptual category. Similarly, the transformative outcomes

presented in the second conceptual category further developed the empowering processes and practices that have characterised FPDB as an enabling social environment. The

interconnection between these two conceptual categories and how these two categories as a whole develop FPDB as an empowering setting are detailed in chapter 9 where I present the overall discussion of this current study.