The Research Process

When I first considered my research into the narratives of parents of autistic children, I did not specify mothers or fathers, and perhaps rather naïvely anticipated that whilst there may be a disparity between the number of mother and father respondents, I would be able to recruit both.  In reality, and upon extensive reading, it became very apparent that mothers remain the primary carer of autistic children, and therefore more likely to participate in research such as mine.  Amazingly, recruitment was easy, once I had identified private Facebook groups that would allow me to recruit research respondents, as well as a Childhood Disability Research Unit and newsletter for families of disabled children. I was contacted by over 50 mothers interested in participating and telling their stories. 

What was fascinating for me was that most agreed to participate as they felt it was a rare opportunity when they would have a chance to talk about their lives without being judged, and with someone that would understand.  However, at various stages of the research process I found there were instances when I did not understand; their experience did not resonate and I made a judgement as to whether I deemed some of their behaviours appropriate or even acceptable.  Regardless of what they told me I actively engaged and listened to their stories, and tried to maintain a professional non-judgemental front.  More often than not it was during transcribing, when I was focusing on the words I was hearing, concentrating to ensure I accurately captured what was said, that I felt an embodied emotional response. 

I was left feeling confused, unsure, vulnerable and naïve.  Confused due to the contradictory nature of my feelings.  Unsure as I could not locate my emotions.  Naïve: I should have expected this.  It was a rookie mistake, demonstrated my lack of experience and it left me annoyed that I had not prepared for this.  I was not prepared; I felt vulnerable by my research which would obviously expose me to experiences that would resonate and some that would differ from my own.  Whilst the accounts of respondents caused strong emotional responses that felt troubling for me as the researcher, feminist research methodologies value these.  The vulnerabilities and emotional experiences that arise from the research process provide a source of insight into the understanding of respondent’s lives and the production of meaningful knowledge (Letherby, 2003). 

I had to remind myself of my privileged position as a researcher; biographer to the ‘mother respondents’.  They shared their story with me, so I could share it for them.  I was committed to hearing the voice of others, rooted in their own experiences and understandings, about their lives with their children.  I felt obliged to hear and represent the authentic voice of respondents.  I needed to hear my own voice, to recognise my authentic voice and my socially constrained moral voice in the interpretation of these experiences (Ribbens, 1998).

Whilst I had not prepared for this embodied response, I have learnt a lot from this experience.  I am not alone in feeling conflicted during the research process.  Researchers can experience feelings of guilt, vulnerability and exhaustion, particularly when researching difficult and sensitive topics  (Dickson-Swift et al., 2009).  Researchers provide a space for respondents to talk, particularly those that do not have many opportunities to share their story may lead to them exploiting the opportunity to participate (Anzul et al., 1991) to gain a sense of catharsis.  They may also disclose personal and sensitive information due to the lack of relationship with the researcher and may disclose information they later regret.  The researcher provides validation, affirming their experiences via the process of engaging and actively listening to their stories (Dickson-Swift et al., 2009). 

Other researchers shared with me that it was not unique, or even unusual, to feel unprepared for what is heard, owing to the nature of the type of research we do, and the uniqueness of each respondents’ voice, story and experience.  Whilst we can have an idea of what we might be told, we cannot predict what each respondent will share.  When confronted with respondents’ intensive stories and accounts, especially when the topic is of a sensitive nature or, as is the case for me, so closely connected to the researcher, researchers need to be aware of the potential burden of the data.  Prepare for data analysis and the transcribing of the interviews, recognising that this is not simply a technical task, but one that involves becoming immersed in each of the stories (Warr, 2004). 

Utilising support networks, whether informal support from colleagues, friends and family or professional research support from academic supervision sessions is essential.  At a recent conference I attended, we discussed this and all concluded that for post-graduate researchers like myself the quality of the relationship between the researcher and the research supervisory team is critical.  Self-care for the researcher should be an explicit consideration of any research.  As researchers we need to reflect upon how our research may impact on us personally, and revisit this throughout the research process to minimise any negative impacts.

Undertaking all this has led me to recognise that I cannot expect to identify with every experience, feeling or view of respondents.  I now have an awareness about the potential of the embodied emotional response of qualitative research.  Ultimately this has helped me to become a better researcher as I am more aware of my feelings and true position.  I was reflective at the early stages of my research, now I am being more reflexive and have a greater awareness of my subjectivity.  

“They shared their story with me, so I could share it for them”

“Whilst I had not prepared for this embodied response, I have learnt a lot from this experience.  I am not alone in feeling conflicted during the research process”

“I was reflective at the early stages of my research, now I am being more reflexive and have a greater awareness of my subjectivity”.  

Extended biography and Reflections on my Participation in the Event and Construction of the Work

My name is Ruthe Castro de Aquino Pinheiro and I am Brazilian, from Salvador-Bahia. I am a Clinical Psychologist, I work in a private clinic, working with adolescents and adults and I work as an instructor at Luz Training Center training professionals in the area of ​​people management providing services to private companies. I also work as a volunteer psychologist at Plan International Brasil, accompanying teenagers and young people in projects in socially vulnerable communities in my state.  

My engagement in social causes led me to my current position as  an executive co-coordinator at the Municipal Forum of Social Assistance Workers in Salvador Bahia (social movement, volunteer work), representing the Regional Council of Psychology. I am also a member of the University of Michigan’s Injury Prevention Center and Injury Child Prevention.

I graduated in 2019, having experienced internships in the following areas: educational, training teachers in topics related to mental health; in hospital psychology with therapeutic groups; in the social area with women in situations of violence; in the clinic with patients in psychological distress. Immediately after graduation, I did my postgraduate studies in Public Health, Humanistic and Hospital Psychology.

My reflections on the conference and the writing of the work

Participating in the conference for Methodological Innovations in the Time of Covid was a pleasure. The event team was fantastic, from the first emails though to abstract acceptance, the day of the event itself and the feedback after the event.

I want to thank everyone involved in organizing this wonderful event and especially Dr. Julie Parsons for guiding me with the abstract format. I initially wrote the work according to ‘traditional methodologies.That is  when I realised that I really needed to revisit and rewrite the work.

I chose the autoethnographic format after carefully reading the event proposal. This time I thought about rewriting the work and putting my expereinces and views more directly, writing in the first person for the first time. I felt that this was the moment to give my voice, to talk about something that belongs to me.

Writing in the first person was a big challenge for me, because in Brazilian academia this methodology is not mentioned. Although I have researched and found a few works in this format. I read articles and watched videos by other Brazilian researchers and I felt they had a similar expereince to mine. Another challenge I found throughout my research was the search for books and articles to support  my work, as the primary sources were only by international authors. The English language for me is still something I am learning so this is another point that I consider very brave of me.

After the reconstruction of  my work, it was time to resubmit the abstract for the event, which was accepted. Then I started creating the presentation slides. On the day of the event, my internet was failing and I had to record a video of the presentation to play live. After the presentation, it was the moment of exchange between the participants. The contributions of the people who were present at the session were of great value to me, it really was an amazing experience, and I can only thank everyone who participated and who made this event something very special.

I end my words leaving a text by the great scholar in honor of his centenary, which says:

“Knowledge emerges only through invention and reinvention, through the unsettling, impatient, continuous and hopeful investigation that human beings seek in the world, with the world and with each other” (Freire, 2014).

“I felt that this was the moment to give my voice, to talk about something that belongs to me”

“Writing in the first person was a big challenge for me”

“The contributions of the people who were present at the session were of great value to me”