Método basado en las recomendaciones de la IASS

As identified earlier my role was a sensory social worker and therefore, insider bias requires acknowledgement in order to contribute to promoting trustworthiness.

Whilst no credible researcher would advocate for biased distortion of data (Patton, 2002) some theorise that bias is inevitable if the researcher has prior knowledge of the phenomenon being researched and that conducting qualitative research as an insider can be challenging (Asselin, 2003). However, prior experience also brings positive aspects as it can be seen as a useful resource. For example, I think my role as a sensory worker enhanced the study as opposed to biasing it because my knowledge and understanding of sensory issues was useful for participants in interview, in terms of understanding of equipment etc. and being able to be flexible with communication.

Credibility:

Adopting descriptive phenomenology and translating data using different methods

Transferability:

Findings applicable in other areas of research e.g. essentiality of family support for people with visual impairment

Dependability:

Use of MSCIM – Detailed descriptions of methods used in research study

Confirmability:

Adopting descriptive phenomenology - Findings arose from participants’ own experiences

To minimise as far as possible insider bias occurring, concepts of reflexivity,

neutrality and suspension of preconception in relation to insider bias and the role of the researcher were considered.

Reflexivity is integral to not only the social work role, but also that of the qualitative researcher. As considered in 3.2, in constructivist research the researcher is

involved in the inquiry as they become responsive and reflective to the participants’

dialogue (Appleton and King, 1997). Shaw (2010) explored the difference between the terminology reflexivity and reflection as they are often used interchangeably.

Shaw highlighted that Woolgar (1988) considers reflection, to be a general set of thoughts concerned with the process and verification whilst reflexivity, is an

evaluation of one’s self or “turning your gaze to the self” (Shaw, 2010 p234). Tisdall et al also highlights that reflexivity is an essential element of qualitative research and defines it as “the thoughtful reflection of a researcher upon the impact of her or his research on the participants….and on the knowledge produced” (Tisdall et al, 2009 p229). It is useful to explore the distinctions as often the two terms are considered to mean the same, but clearly they do not.

There are a range of reflexive “research traditions” (Finlay and Gough, 2003 p6) which include: reflexivity as introspection, which involves the researcher’s own reflections being primarily used; reflexivity as intersubjective reflection where

“researchers explore the mutual meanings emerging with the relationship” (Finlay, 2002 p215); reflexivity as a mutual collaboration which “seeks to enlist participants as co-researchers” (Finlay, 2002 p218); reflexivity as social critique which

“acknowledges tensions arising from difference social positions” (Finlay, 2002 p220) and reflexivity as discursive deconstruction where “attention is paid to the ambiguity of meaning in language used and how this impacts on modes of presentation”

(Finlay, 2002 p222).

After reflecting on which reflexive model was compatible with my study, reflexivity as introspection was chosen, for two reasons: firstly, because introspection examines

“one’s own mental and emotional processes” (Thompson, 1996 p522) resulting in

“insights emerging from personal introspection” (Finlay, 2002 p214) and secondly because interest begins with discovering “an intense interest, a passionate concern that calls out to the researcher” (Moustakas, 1990 p27).

In this study I had passion for engaging in sensory research following a professional sensory career which spanned more than a decade. Additionally, our role as

researchers is to make sense of the life experiences participants tell us with a view of learning more about them, to effect change, whether it is in terms of policy and practice or raising awareness or “enhancing understanding on an individual or institutional level” (Shaw, 2010 p233).

Finlay (2002) highlights the value of using introspection and the usefulness of being reflexive about one’s own personal reactions. Within my study, there were occasions when the experiences shared made me feel extremely saddened, by reflecting on my own personal reactions, this enabled me to make sense of the experiences that were being shared and see that the participants were now at a time in their lives where they felt able to share their experiences, which meant they themselves were now in a better place, than when first experiencing Usher.

However, Finlay also warns that there needs to be a balance and researchers need to avoid being too “preoccupied by one’s own emotions and experiences“(Finlay 2002, p215) otherwise the participant’s voices can get lost. Finlay also highlights that challenges can also arise when using introspection as reflection and

researchers need to ensure that their own personal reflections are used as a

foundation for knowledge and insights, and that these personal reflection recognises

the links between “knowledge claims, personal experiences of both participant and researcher, and the social context” (Finlay, 2002 p215). In my study, although I was aware of my own reflections, the experiences of the participants were paramount.

Reflexivity requires action in terms of the act of self-reflection, resulting in analysis on the researcher’s part as “one cannot be reflexive about what one takes for granted” (Taylor and White, 2001 p55). Whilst I acknowledged that the participants’

positioning, which could include age, race, gender etc. (Berger, 2015) may affect the research process, the main area of consideration related to my professional sensory knowledge. Therefore, key to the study was my reflexivity with regard to the impact of the research on the participants. Shaw posited that “experiences must be

understood within the context in which they happen” (Shaw, 2010 p234) e.g. the participant’s personal experience of life with Usher. Also that “we experience and interpret the world from a particular perspective and we can never fully escape this subjectivity” (Shaw, 2010 p235).

Subjectivity relates to reality and truth, from a subjective view or a variety of sources (Ratner, 2002) and can be used as an “important inroad to understanding and constructing knowledge” (Mruck and Bruer, 2003 p25) and as a tool to improve knowledge (Mruk and Breuer, 2003). Ratner (2002) posits that subjectivity guides everything we do with regards to the research process because it guides our topic choices, selection of methodologies and how we interpret data. Additionally, Bruer et al (2002) suggest that “personal, social, and local factors influence the research process” (p246).

Giorgi (2002) asserts that as there is a strong correlation between phenomenology and subjectivity “the very ambition to eliminate subjectivity is an impossible dream”

(p10). Giorgi (2002) posits that within phenomenology, “the goal is not to try to

eliminate subjectivity, but rather to try to clarify the role of subjectivity when correct knowledge is attained” (p8). Giorgi (2002) further highlights that the goal is to “study actual situations” (p10), which means that as far as possible the researcher stays true to the descriptive accounts of the participants but still taking into account that subjectivity is present. Ratner (2002) highlights that there is a positive impact on the research project when the researcher reflects on the values and objectives he/she brings to the research. Mruck and Breuer (2003) suggest that the researcher is also a research tool and that there are lots of different skills that researchers bring to the study.

On reflection within my own study there was a positive contribution to subjectivity because I brought sensory skills and knowledge which had a positive impact on the research. For example, the participants were more willing to talk to me and allowed me to collect data because of the sensory knowledge and skills I had. Also, as discussed in chapter 3, when recruitment was difficult, an opportunity arose to provide communication guide service support⁴¹ to one of the members of the hearing and sight impaired (HSI) group to a HSI social event. It was following this event that members of the HSI group got to know me better and were more willing to be involved in the research study and agreed to be interviewed. If I had not had the sensory skills required to enable provision of support, the opportunity to recruit more participants for the study would not have been available to me.

I kept field notes after the interviews, and made notes when conducting interviews via Skype or telephone. The recording of field notes when conducting interviews in visual frame BSL, hands on signing or deafblind manual were not possible during interview, but notes were made after. The keeping of field notes or notes was considered crucial because often as humans we quickly forget information received (Montgomery and Bailey, 2007). Some interviews were emotive, for example Ben

expressed that “I thought at that time everything hopeless” and went onto share experiences at college where other students had bullied him. The issue of personal researcher emotion emerged as a result of sensitive experiences shared by the participants. I considered myself to be generally reflexive as this was a skill acquired and practised as a sensory social worker therefore I dealt with my emotions that arose in the conduct of research in a similar way, which was in a practical manner, for example taking physical exercise.

As the interviews progressed, I reflected upon, and became aware of, not only the different ways the condition affected a person practically, for example the inability to drive, but the effect the condition had on the person psychologically, for example depression and the impact of sharing their experiences with a researcher (see Chapter 4). The fact that experiences were sensitive highlighted the

inappropriateness of member checking (the process of checking data with

participants), as whilst the participants were willing to share their experiences, the sharing of them clearly had an impact on them (Ben) and reliving these experiences again to member check was inappropriate. The participants were prepared to

contribute to the interviews but not be contacted back as their experiences were of a complex and delicate nature. Experiences shared were unique and individual. For some people the experiences were very difficult to share (Monica) and for others it was an opportunity to raise awareness and share their narrative (Kate). Reflecting upon the impact of this research on the participants, highlights that whenever an individual experiences an unpredictable, debilitating and deteriorating condition such as Usher syndrome, great sensitivity is needed throughout the whole research process as participant experiences are not just snapshot experiences but their whole life experiences.

Thus to summarise, this study drew on reflexivity as introspection as my reflections were impacted by my personal experiences as a professional sensory worker, which in turn led to fuller understanding of each participant’s experiences. Embedding reflexivity into research allows us to come to know our-selves and in turn “use each participant’s presentation of their self” (Shaw, 2010 p235) to review and maximise data collected and analysed, and as far as possible reduce insider bias. As

reflexivity as introspection was chosen, it could be suggested that reducing insider bias would not be possible, however exploration of neutrality and insider bias considers strategies that could be utilised.

Neutrality arises when considering insider bias, Patton highlights that for research to be considered trustworthy or credible the researcher needs to adopt “a stance of neutrality” (Patton, 2002 p51). In simple terms this means that the researcher does not “set out to prove a particular perspective or manipulate the data to arrive at predisposed truths” (Patton, 2002 p51). Neutrality was an essential element within the study because as highlighted earlier I was aware that experiences of Usher syndrome affected people in different ways and that data shared would be

individually unique. Patton suggests that the researcher who adopts neutrality has a commitment “to understand the world as it unfolds” (Patton, 2002 p51), so within the study my position was neutral because I took participant’s experiences as a given and enabled participants to feel comfortable in sharing their experiences. Also, as discussed previously whilst subjectivity may influence research because as

researchers we make methodological and personal choices which can influence the research process, the researcher can still maintain neutrality by not setting out with pre-conceived ideas or manipulating the data to achieve an end result but rather being committed to gaining and understanding knowledge as it is constructed.

To contribute to a neutral stance being adopted I wished to avoid preconceptions,

impacting, manipulating or affecting data, and so suspension of preconception also known as bracketing/epoche as discussed in section 3.3.1 was adopted. As our thinking is shaped by the literature available (Smith, 2009), professional/personal experiences and different ideas that are presented to us, suspension of

preconception was a useful tool to avoid putting particular perspectives on the data collated from people with Usher. Previously considered was the notion that the researcher when analysing data needs to suspend preconceptions in order to focus on grasping the experiential world of the research participant. However, it could be suggested that this is also the case within the interview process to as far as

possible, minimise insider bias.

Whilst knowledge accrued from my professional sensory experiences was useful, for example understanding sensory terminology/equipment and having an

understanding of what people are going through as a result of their sensory loss, I also considered that suspension of preconception was an essential element within the research as it empowered the participants to share their narrative/experiences and allowed data to tell its own story and unfold freely (Patton, 2002).

Using qualitative evaluative approaches such as Guba and Lincoln’s naturalistic criteria (1989) as well as considering the credibility, methodological rigour and insider biases of the research undertaken, contributes to promoting trustworthiness and providing an audit trail to enable other researchers to attempt to replicate the study and strengthen confirmability (Billups, 2014, 2016). Whilst the audit trail does not tell other researchers how to conduct research it does give the researcher’s own view on how the process worked for them (Billups, 2016) as outlined in this section.

3.8 Chapter summary

In this chapter the methods were introduced. The researcher’s paradigmatic positioning (Figure 3.2) was presented together with the rationale and decision making behind choosing a descriptive phenomenological approach for the study.

Additionally, also discussed were the data collection methods adopted; the data analysis method; ethical considerations, trustworthiness in qualitative research and how this was achieved in the study and steps taken to minimise insider bias. In Chapter 4 the findings section of the thesis will be presented.

Chapter 4 Findings