Data Collection Activity

The data collection activity “continues throughout the research process with different intensity at different points” (Chang, 2007). Chang (2007) refers to data as “field texts”

as she declares that this “describes more accurately what autoethnographers do.” Data collection commences with seeking out appropriate research sites, making clear the objectives of the study, seeking the approvals of the relevant authorities at those sites and proceeding with the purposeful sampling activity. The assembling of an information

166 base for this study began with documentary evidence discussed below and structured interviews using open-ended questions. The activity commenced with the gathering of

“members” (i.e., siblings taking care of persons with disabilities).

7.3.3.1. Selection of “Members of the Family”

Perera (2005) complains that a major obstacle in the path of field researchers is “getting access to a suitable research site.” In many cases, the apathetic attitude arises from a lack of understanding of, and the absence of concern with, the objective of the study.

This is aggravated by the fear of breaching confidentiality, and general worries about the sensitivity of the whole affair. By research standards, researchers “are expected to minimise sample selection bias when selecting the research site [but] because of the limited opportunities available to them, researchers often select those organisations that are willing to cooperate, those that have a unique situation, or those who needs outside help” (Perera, 2005).

In this study, in line with the intention to do purposeful sampling, requests were sent out to fifteen nursing homes, old folks’ homes, associations related to persons with disabilities to first identify if any of their inmates or members were cared for or financially sponsored by a sibling, and then to be able to interview the sibling. As no responses were received, appointments were made to personally see and appeal to the persons in charge of the organizations. The response was disappointing, with many rejections in spite of emphasising that the study seeks to address an inequity in society and intends to advocate for a change to help transform society. The main reason quoted by those who refused to participate, in spite of the promise of anonymity and the profound emphasis on the merits of the study, was that in their opinion, even speaking

167 of their disabled kin would breach the fundamental ethics of privacy and secrecy. One group based its refusal on a rather unusual religious outlook saying that such disclosures would nullify all the goodness that they had harvested by taking care of the disabled siblings and jeopardize their chances of achieving heaven/nirvana etc. Another viewed the practice of taping the conversation suspiciously and commented that the maintenance of anonymity does not provide a guarantee that their voice will not be recognised by others. The last group however, acceded to the researcher merely taking notes during a discussion with the assurance that the final copy would be provided to them for their concurrence of the accuracy of what was written. These views are discussed in the section on field notes presented below.

After relentless endeavours, a favourable response was received from one nursing home that referred the researcher to the two sponsors of their inmates who were also their siblings, after having obtained their express permission for the information to be released. Both the respondents were of the same race but different religion.

As the response was weak, with mainly respondents of the same race/religion being introduced, the researcher attempted to use snowball sampling strategy instead.

Creswell (2005) elucidates that this “proceeds after a study begins and occurs when the researcher asks participants to recommend other individuals to study.” This is usually done “as a question during an interview or through informal conversations with individuals at a research site.” With this renewed effort, eight qualified respondents of the Hindu faith were obtained, with one respondent having two disabled sisters.

Subsequently, an additional seven respondents with different racial and religious backgrounds were found, bringing the total number of participants to seventeen. The additional respondents included two Muslims, two Buddhists, two Christians and a

168 person with an undisclosed “personal religion.” Initially, the researcher was apprehensive about the inadequate number of non-Hindu respondents interviewed.

However, as the themes emerged and were coded and categorised, the similarity of the responses was indicative of saturation as explained below.

Bowen (2008) explains that “data saturation or theoretical saturation is integral to naturalistic inquiry”, but Reilly et al. (2012) state that the latter was “developed [for] the approach of grounded theory” and so bears no relevance to this study. However, they advise that data or thematic saturation “are normatively taken to mean that data should continue to be collected until nothing new is generated; the point at which there are fewer surprises and there are no more emergent patterns in the data.” Bowen (2008) concludes that “saturation is reached when the researcher gathers data to the point of diminishing returns, when nothing new is being added.” He cites Charmaz (2003) who

“explains that saturation calls for fitting new data into categories already devised”, and also Morse et al. (2002) who “point to the purpose of data saturation: ‘saturating data ensures replication in categories; replication verifies, and ensures comprehension and completeness’.” Dickson-Swift et al. (2009) interestingly point out:

…it’s not just about saturation of when you don’t get new themes . . . it’s about your saturation as well – how much you can actually take and I could not, could not have fronted for another one of those interviews.

The next step was to determine how to obtain the views of the other “members of the family” with respect to the advocacy of tax relief for siblings of persons with disabilities. A taped interview was thought to be the most appropriate method of collecting the information. To ensure that the quality of the recording was high, the suggestions by Patton (1990) were strictly adhered to. The list of suggestions is detailed in Appendix A.

169 7.3.3.2. Taped Interviews

Patton (1990) aptly describes the purpose of interviewing as “to find out what is in and on someone else’s mind . . . [and] . . . to find out from them those things we cannot directly observe.” He extends this to open-ended interviewing where he emphasises that the purpose “is not to put things in someone’s mind but to access the perspective of the person being interviewed.” Chang (2007) further explains that the tool of interviewing as a “vital data collection technique” because she says “the interviews provide not only outsider perspectives, but also external data to confirm, complement, or dispute internal data generated from recollection and reflection.” However, she is quick to caution that sometimes “face-to-face interview can hamper honest exchanges between interviewers…and interviewees.”

Patton (1990) discusses “three basic approaches to collecting qualitative data.” First, the informal conversational interview which “relies entirely on the spontaneous generation of questions in the natural flow of an interaction.” Second, “the general interview guide approach” outlines “a set of issues that are to be explored” but does not entail “a set of standardised questions…written in advance.” The third is the “standard open-ended interview” consisting of “a set of questions carefully worded and arranged with the intention of taking each respondent through the same sequence and asking each respondent the same questions with essentially the same words.” Silverman (2000) elaborates on the advantages of taping an interview. He first emphasises that without taping the researcher will not be able “to remember (or even note at the time) such matters as pauses, overlaps, inbreaths and the like.” He then notes the value of the tapes as undisputable evidence, plus “they can be replayed and transcriptions can be improved and analysis taken off on a different tack unlimited by the original transcript.” Finally, he talks of words uttered by others in the environment, which may bear relevance to the

170 study; this may be caught on tape but may be missed by a researcher desperately trying to keep up with the pace of the respondent’s answers.

As this study was based on the specific objective of advocating for the introduction of tax relief for siblings of persons with disabilities, the third approach was held to be the most relevant one. The obvious benefit of this approach is that minimum “variation in the questions posed to interviewees…reduces the possibility of bias.” However, the questions are not devoid of “clarifications and elaborations” and are complemented by

“probing questions . . . placed . . . at appropriate places” (Patton, 1990). He delineates this approach’s advantages as: 1) “the exact instrument used in the evaluation is available for inspection by decision makers and information users”; 2) “variation . . . can be minimised”; and 3) “the interview is highly focused” so the respondent’s time is not wasted.

7.3.3.3. Field Notes

Many participants voiced reservations to having the interview taped, even with the assurance that it would be on an anonymous basis and the contents were purely for this study alone. The researcher therefore had to take field notes as open ended questions were posed to the respondents.

Lofland (1971) declares that field notes are “the most important determinant of later bringing off a qualitative analysis.” The importance of field notes has also been emphasised by Anderson (2006), especially because of the researcher’s dual role as “a member in the social world under study and as a researcher of that world.” He also stresses the need for an “enhanced textual visibility of the researcher’s self” which

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“demonstrates the researcher’s personal engagement in the social world under study”, and also serves to “illustrate analytic insights through recounting their own experiences and thoughts as well as those of others.” Field notes also serve to augment the researcher’s memory of what was spoken by respondents and participants, as well as his own perceptions of the environment in which the interview was conducted, the emotional and psychological condition of the respondents and any other pertinent facts that bear relevance to the “data” collected.

7.3.3.4. Written Interview Guide

Chang (2007) also offers “other creative alternatives such as email survey or questionnaire compiled” which may allow the respondents to express their feelings more freely and provide more accurate answers because they have the leisure of adequate time to think thoroughly. Again, in this study, many participants voiced reservations to even participating in an interview out of concern that their voice would be recognised. However, they were willing to provide answers to open-ended questions in the form of an extended questionnaire which contained the same questions asked of respondents in a personal interview. The interview guide used in this study can be found in Appendix B.

For both the interviewees and those who obliged to fill in the interview guide, the ethical practices employed by Pearce (2010) were closely followed. All participants received “full details of the research [which clearly] outlined details about confidentiality and anonymity”, and which also included the research questions and research objectives. The participants were told “before and at the interview that they need only talk about what they felt comfortable with” and they were assured that they

172 had a “right to read and comment on the completed dissertation.” My involvement was restricted to “asking few direct questions”, which provided the participants “space to build and guide their own narrative.” However, where the participant/respondent had

“difficultly knowing what to say without direct questions”, I “shared a little of my experience” purely for clarification purposes.