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Getting Close to the Context and Experience of Illness: Critically Reflexive Fieldwork in
Qualitative Health Research
Roli Pandey*, Anuja Khanna*, Deepika Sharma*, Arpita Gupta*, Prama Bhattacharya*,
Shilpi Kukreja**, & Dr. Kumar Ravi Priya***

Abstract

Since more than three decades, the perspectives of critical health psychology and new cross-cultural

psychiatry within the field of health sciences have renewed the focus on experiences of illness and

healing. Such an impetus to research exploring the person’s life experiences was based on the

imperative of how the cultural and structural processes intricately shape the diverse experiences of
illness, distress, or healing. The task of getting close to the person’s experiences of illness or healing

inherently requires a qualitative researcher’s orientation or motivation to unravel the hierarchies or

power positions (related to gender, religion, caste, class, or academic expertise) surrounding not only

the participant’s life context but also the researcher-participant relationship. In order to understand

these hierarchies and build a trust- or compassion-based research-participant relationship and to

explore the participant’s experiences within context, this paper illustrates the use of critical

reflexivity, i.e., researcher’s critical and continual awareness of his or her personal, theoretical,

epistemological and ideological assumptions behind research and the researcher-participant

relationship. Examples from our ethnographic studies (on caregiving of children diagnosed with

Autism Spectrum Disorder, transgenerational trauma, disability experience, ‘personal’ recovery

among severely mentally ill persons, social suffering of homeless mentally ill people, and
institutionalized care for mental health) indicate how doing critically reflexive fieldwork not only

helped us comprehend the socio-political and cultural contexts of participants’ lives but also enabled

us to develop an empathic understanding of their distress or healing.

Keywords: critical reflexivity, experience, health, illness, qualitative research

*Doctoral Student in Psychology, Dept. of Humanities & Social Sciences, IIT Kanpur
**PhD in Psychology from University of Delhi
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***Professor of Psychology, Dept. of Humanities & Social Sciences, IIT Kanpur

Introduction

It is well-established that the advent and growth of qualitative research in the field of

health sciences were endorsed and advocated by psychologists, psychiatrists, and other social

scientists who adopted critical and interdisciplinary perspectives such as critical health

psychology (Hepworth, 2006; Lykes, 2000; MacLachlan, 2000; Murray & Poland, 2006; Stam,

2006) or new cross-cultural psychiatry (Kleinman, 1987; 1988a, 1988b, Lewis-Fernandez &

Kleinman, 1994). These critical and interdisciplinary perspectives are premised on reaching out

to or getting close to the voice, i.e., subjective experiences and identity (Sampson, 1993) that are

often subdued or silenced by the positivist approach to research in health sciences. It is

paradoxical that this approach uses implicit Eurocentric assumptions such as mind-body dualism,

egocentric view of selfhood, and considering culture as a by-product of biological processes

(Lewis-Fernandez & Kleinman, 1994), alongside its claims of doing objectivist and universalist

science. It is not surprising then that qualitative health research (QHR) generally adopts what

may be understood in Gergen’s (2015) terms as its deconstructive and reconstructive features.

The former is about being critically aware of Eurocentric (as well as objectivist) assumptions that

underlie the positivist research approach, while the latter entails research creating research

spaces where the researcher and participants may form a trust-based relationship in order to enter

into a genuine dialogue about their experiences and standpoints.

Reflexivity is a process that facilitates the learning of deconstructive and reconstructive

features of QHR. It is defined as the orientation of the researcher to be consistently critical and

conscious of the implicit premises, assumptions, ideologies, and human relations associated with

research (Chamberlain, 2004; Priya & Dalal, 2015). Chamberlain (2004) posited that researchers

are not independent of their research and are, in fact part of the social world that they seek to
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investigate; they are intimately involved in the research practices that they conduct. This raises

questions about the nature of the effect of their involvement, and reflexive researchers attempt to

address such issues—who is the researcher (female, black, middle class, and so on), what do they

bring to the research (values, assumptions, and so forth), and how has all that impacted the

practices, findings and outcomes of the research?” (p. 125)

Despite the apparent incorporation of the ideological or hierarchical aspects of research

and the human relationship associated with it in the definition of reflexivity, Gemignani (2017)

and Gergen (2015) have called for critical reflexivity as they emphasize the researcher to be

critical of one’s own status or authority that one brings to the researcher-participant relationship.

Critical reflexivity also accentuates the need to outgrow the narcissistic approach to research that

may blind the researcher to look beyond the theoretical and motivational standpoints that he or

she had at the beginning of research, as if the researcher remains unchanged as a scholar and a

person throughout the research. Indeed, these methodological as well as ethical questions that

critical reflexivity invites researchers to address are not entirely new. The works of social

scientists such as Charmaz (2017), Frank (2000, 2001), and Radley (2004) have addressed these

indirectly or in parts. Yet, we contend that researchers seldom find systematic and illustrative

examples of research that highlight the role that critical reflexivity may play in adopting the

deconstructive as well as reconstructive features of QHR. Keeping this in mind, this paper

addresses the following questions:

1. How does a researcher prepare motivationally as well as academically to be critically

reflexive about the QHR one plans to undertake?

2. How do reflections about the researcher-participant relationship address the hierarchy

often ingrained in it?

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3. How does the research process foreground different aspects of the roles, relationships,

and identity of the researcher in order to create an empathy- and trust-based researcher-

participant relationship?

a. How is a researcher able to connect or empathize with the participants’

experiences if he or she might not have had similar experiences in life?

We utilize the reflexive accounts on ethnographic studies conducted by the first six

authors of this paper on caregiving of ASD children, transgenerational trauma, disability

experience, ‘personal’ recovery among severely mentally ill persons, social suffering of

homeless mentally ill people, and institutionalized care for mental health respectively to address

these questions related to the use of critical reflexivity. It is noteworthy that the question ‘3a’ is

addressed through the inclusion of the first three research reflections where the researcher had a

similar experience (with herself, a family member, or a close friend) as that of the participants,

while the last three instances involve the researcher who did not have a similar experience. In our

account of their research journey presented below, we have highlighted, (a) ‘locating the

researcher’ while proposing the study and while addressing the hierarchy within the researcher-

participant relationship, (b) being aware of the cultural and structural contexts of participants’

lives, and (c) insights about experiences of illness or healing through empathic connections with

the participants.

Research Reflection 1

“Can I Remain an ‘Ordinary’ rather than a ‘Special’ Parent”: Listening to the Voices of

ASD Parents

Autism Spectrum Disorder (ASD) is considered as one of the most demanding childhood

developmental disabilities that a family can face, primarily because of the tribulations or distress
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its characteristics (i.e., limitations in social communication and interaction, and restricted and

repetitive behavior) can bring about in its members. The notion of growing as a ‘normal’ family

gets disrupted with the advent of ASD. My doctoral research aimed to explore the parents’

potential experiences of self-growth along with those of intense distress, from an

interdisciplinary approach of new cross-cultural psychiatry that focuses on subjective

experiences of suffering and healing through ethnography and other qualitative approaches.

Thirty sets of parents were interviewed in Lucknow and Kanpur, tier II cities of Uttar Pradesh.

Interview sessions were carried out in the home setting. Access to parents was gained through

special schools and therapy centers.

My Motivation to Explore the Lived Experiences of ASD Parents

The idea of my doctoral research can be traced back to a time when I was a part of a

multidisciplinary team in Child development and Guidance Clinic (CGC) in Delhi. During my

interactions with patients, I came close to an ASD family for the first time only during a home

visit. In the clinic, however, everything used to be seen from the professionals’ end; appeared to

be the only story which was ‘complete’, where the broad aim was to diagnose the case, psycho-

educate the parents and recommend intervention, irrespective of the fact that parents didn’t have

any say or voice in that (the way it should have been). As a professional, I often felt trapped in

the hierarchy of a systemic world; at the professional’s desk no matter that I would claim that I

was doing the required, but, in reality, I was always bound by space and time that seldom

allowed seeing the world of parents from their own perspective. Thus, my professional role

would never let me come close to the parents in the clinic. Though inwardly I wished to be more

humane, but, the hierarchical spaces I was bound in did not let me act as per my virtues.
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Once I visited the home of a family, where I witnessed the ‘incompleteness’ of the child’s

case-history taken in our clinic, i.e., CGC. The experience at home—its settings, its little things,

the interactional space being ‘home’ where a parent resides—elucidated the reality of being a

parent to an ASD child. This home-visit was not about extracting the case-details from parents,

but it was more about knowing them. There was ‘something more’ to every little thing; here the

child’s case-history was not merely a case-detail, but a story. This story made me see that as a

professional, one was just ‘giving’ with no ‘care’ in it, and this caregiving was incomplete. It

often made me wonder what was happening at my place, with people who are residing in places

with scarcity of resources (Lucknow and Kanpur). I wanted to understand the seen-

incompleteness. I wanted to bring forward the complete story of those invisible and unheard

parents, and this became a major research goal in my doctoral research.

Whether to Align with the Institutionalized ‘Care’: Negotiating My Identity as a

Researcher

I wanted to interview parents in their most comfortable setting, i.e., home. But, due to

hierarchal settings, I was expected to interact with them via designated centers. Parents could

only be located through special schools or therapy centers. As a researcher, it was important to

know the quality of relationship that these parents had with the center. My decisions were to be

based on what was primarily seen through parents’ eyes and therefore my ways of relating with

the system (clinic or center) relied heavily on parents’ relationship with it. Thus, since the

beginning, I tried to remain as neutral as possible and tried my best not to get soaked in the

identity of being a ‘part of the system’. In order to understand parents’ perception of the center, I

decided to do a brief focused group discussion with them. The outcome of the discussion gave

various points of consideration. One of the most important points was that parents of many
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centers were not that satisfied with its working style. The dissatisfaction they had from the

system made me reconsider my role of associating with the center. I became sure that if my

identity had to be aligned with the centers, it would hamper my relationship with the parents and

it would become difficult for me to establish any kind of close relationship with them. The

parents would always be apprehensive about discussing things about centers. As my priority was

to ‘get closer to the parent’, I decided not to be a part of the center because parents’

dissatisfaction with the system is also a part of their story which I wanted to listen to in detail.

My predominant motivation was to bring forward their complete story of being a parent to an

ASD child.

Listening to the ‘Gendered’ Nature of Parents’ Experience

The society we reside in has its own norms and culture. Being a mother and being a

father, both hold different meanings in our culture. Thus, being aware of these aspects of culture

and ‘getting closer’ to them required a different set of understanding and instant awareness

during interview sessions. As a routine, I was permitted by all the parents to tape-record

interview sessions. I observed that mothers were comfortable with getting their experiences

recorded, but most fathers hesitated to talk in the presence of the recorder. I noticed that during

the first few interviews, whenever I switched off my recorder, many fathers started to open up

more, because in the presence of the recorder they had this ‘feeling of being reported’. They

knew that the interview was over, but still wished to complete an on-going conversation. Some

critical aspects of their emotions came out only in the absence of the recorder, especially the

vulnerable side of them. Some of them even cried during those moments. To allow them to be

comfortable with their emotions, I recorded initial parts of the interview session, but, after about

half an hour, I purposely switched off the recorder. I recorded the remaining details in a diary
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immediately while travelling back from the sessions. Allowing fathers to be comfortable in their

settings helped me to explore their emotions in a more comprehensive manner.

My Personal Engagement in Caregiving as a Bridge to Parents’ Experience

My curiosity to hear the real voices of parents deepened during the second phase of the

fieldwork, when my whole being as a researcher got affected due to personal experiences. The

feeling of associating with the participants amplified when my close friend’s child (Ananya)

started showing symptoms of ASD. Being very close to Ananya’s mother, I started my journey

as a virtual family member to Ananya, where my friend and I were busy figuring out the puzzles

of ASD. Though we were residing in different geographies (USA and India), we started to have

detailed conversations around Ananya. Internal difficulties—How to proceed? Where to go?

What to do? Whether to accept it (the diagnosis)? How to stay strong? How to keep moving

ahead?—had started affecting my friend. I tried to absorb the experience as a professional but I

could not, because Ananya was so close to me that it was impossible not to see it through a

parent’s eyes. My interaction with the other parents in the field shaped up from being just a part

of a research to an expansion of my own being like a family member to an ASD child who was

wanting to understand the experiences of similar parents more closely. I genuinely got involved

in the world of parents with an ASD child and tried to go closer to each of them. It was more

about experiencing what it is to be a parent to an ASD child rather than analyzing their emotions

from a far angle. Thus, in subsequent phases of fieldwork, I started living the experiences of my

participants’ story. What they said took me back to the struggle that I and my friend had gone

through—our constant worry of finding a pathway to diagnosis, persistent denial to see some

obvious signs of ASD, questioning God and His motives, and becoming conscious of society’s

judgement for this condition. This empathetic connect not only changed the whole course of my
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being a researcher, but also taught me the real meaning of categories like ‘fear of labelling’ that

emerged in my analysis of parents’ narratives. These parents are craving for normalcy in their

life and calling them ‘special parent’ is not what they wish to hear. They want to remain just an

‘ordinary parent’!

Research Reflection 2

Studying Trans-generational Transmission of Trauma: My Reflections on Ethnographic

Fieldwork

Trans-generational transmission of trauma (TGT) as a concept is understood as intense

distress that the second or subsequent generations experience due to the direct (verbal) or indirect

(observational) impact of traumatic experiences of the parents who survived ethnic or political

violence. These impacts of parents’ traumatic experiences on their offspring have been

predominantly studied in terms of distinct psychopathological symptoms. This limited focus on

pathology radically undermines the lived experiences of distress that might not just be associated

with the transfer of pathology, but also the everyday distresses that are rooted in contemporary

socio-political realities. It is therefore critical to address the impact of these potentially

distressing socio-political conditions in the post-violence period that may affect the relational

dynamics between the two generations and lead to the probable transfer of distress as well as

healing. In my study, I have attempted to understand the phenomenon of TGT within the context

of the 1984 violence against the Sikh community living in New Delhi (that erupted in the

aftermath of the killing of the then Prime Minister of India, Mrs. Indira Gandhi, by her Sikh

security guards) to study its resonances and ramifications in the lives of survivors and their

families.

My Sense of ‘Loss’ as a Precursor to Exploring TGT

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My journey as a qualitative researcher began with an interaction that I had with my

professor (under whom I wanted to pursue my doctoral work). During our conversation, I had

briefly shared how I have been intrigued by the experience of ‘loss’ that has shaped varied

aspects of my selfhood. I was then asked to reflect further and pen down about this ‘experience

of loss’ which became the starting point for my doctoral work.

My first exposure to the lives of 1984 anti-Sikh violence survivors was when a poignant

article titled, Our Work to Cry: Your Work to Listen, by an eminent scholar Veena Das (1990)

was introduced as a part of a course on ‘Disaster Mental Health’ at IIT Kanpur. It was the same

year that marked the 30th anniversary of the tragic event of the 1984 violence; the print and

electronic media were filled with cover stories on the survivors and their families. What

intrigued me was their sense of loss that was ‘personal’ yet shared by a whole community. I was

further engaged with the topic when I found out about a personal connect wherein my father had

saved a Sikh neighbor family by hiding them in our home. My parents told me that the extent of

the event was such that no one who had witnessed the event would have remained untouched by

the unprecedented violence that was unleashed in the streets of Delhi for three days. Their

memory of the event brought to the fore horrifying details and evoked strong emotions not only

in them but in me as well. The topic was especially meaningful since it was the same time when I

had lost my maternal grandparents. My own experience of loss led me to extend myself and

relate to the people who too had experienced loss. Following further discussions with my

doctoral thesis supervisor, our initial focus on the experience of loss in the context of 1984

violence extended and took the form of the study of TGT among the families of the survivors.

Negotiating Survivors’ Suspicion over My Motives

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To gather a rich understanding of their life-worlds, I used ethnography to immerse myself

in the field and develop close familiarity and empathic relationships with them. In doing so, I

interacted with 27 dyads (one parent and his/her offspring as a family unit of the study) and

conducted semi-structured interviews with the participants.

My first field visit was more or less foundered, mainly because of my identity as a

stranger that led them to perceive me with grave suspicion. Nonetheless, my initial experience

made me mindful of the prevailing socio-political context as I realized that after 30 years of

endurance, while many had lost the will to engage any further, others were still willing to share

their stories, though they were gravely concerned over the purpose and use of their stories due to

their prior experiences of exploitation. I also became aware of the multiple hierarchies that exist

within the researcher-participant relationship itself wherein I as a researcher was being looked

upon as one of the ‘reporters’ who had come to ‘cover a story’ for my vested interests. These

initial experiences made me aware of the significance as well as the need to ‘break the ice’ and

establish a mutual relationship of trust with my research participants. In my subsequent field

visits, I keenly started observing their day-to-day activities and routines. One evening as I was

exploring the field site, I found a group of women who were doing yoga asanas. As a yoga

practitioner myself, I got intrigued. As I approached them and introduced myself, we started

having a casual conversation wherein they also informed me about their concern about their

physical and mental health. When I shared my own experience of practicing yoga and meditation

and how it had personally helped me over the years, they expressed their desire to learn these

practices in a better way. We mutually decided and started meeting in the mornings for our daily

practice together. Gradually, I was made a part of their everyday conversations and was being

referred to and introduced in the locality as a girl who teaches yoga. I started visiting their
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homes, meeting their families, and slowly formed a bond that got deepened through our practice.

The practice of yoga and meditation had given us a common ground to connect.

Insights about How Victimhood is Normalized

Over the course of my relationship with different families, I became acutely aware of the

socio-cultural and structural contexts of their lives. I became mindful of their difficult life

experiences associated with 30 years of denial of voice, care and justice due to the apathetic

attitude of various political, legal and judicial systems. As a researcher as well as a person, it was

important to be sensitive to their experiences of loss, marginalization and victimization that they

experienced in the aftermath of violence. It was during the interactions with participants that I

became especially mindful of not using the word ‘riot’. The characterization of ‘violence’ as

‘riot’ aroused strong emotions in them as they recounted the painful memories of the violence as

‘a well-planned and politically organized event’. While there was a marked similarity in their

narratives and retellings, it was also important to acknowledge and bring forth the ‘alternate

reality’ that exists amidst the dominant portrayal of their identity as ‘victims’. This alternate

reality became glaringly visible when I came across families who voiced their concerns on being

defined as ‘victims’ because their life stories defy these labels; particularly when these labels

became a tool to simply erase their voices from public memory. From my field visits, I got a

clear sense that such families have not been provided a means to articulate their voices amidst

the distressing dominant socio-political and structural forces wherein it largely remains

undermined and underrepresented. When provided with an experiential space to express and

assert their sense of ‘agency’, many participants expressed a sense of relief on being listened to.

Empathizing with Survivors’ Loss and Healing

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Driven by a period of struggle and quest to find a resolve, my own experience of loss

provided me with a ‘space’ to connect with my participants. The loss that they experienced not

only stemmed from the loss of their loved ones but was also the loss of ‘valued’ aspects of their

lives that was rooted in their everyday struggles. Being mindful of such aspects, my empathic

connect not only came from me as a person but also as a qualitative researcher who has been

sensitized to study the contextualized experiences of distress and healing. The voices from the

field not only recounted the lived experiences of distress but also conveyed enabling experiences

of healing. Throughout my fieldwork, many participants shared their experiences of healing

through their unshakeable faith and connection with their Gurus. My close connection with my

own Guru and my faith in the existence of a Supreme power led me to relate with my

participants. The mutuality of our experiences facilitated enriching disclosures around the

healing power of ‘faith’.

Research Reflection 3

Being a Witness to the Disability Experience: My Journey as a Daughter and a Researcher

Disability experience in India is situated within the larger socio-political context of poverty,

deprivation, and marginalization. World Bank Report 2003, states that India has about 70 million

persons with disabilities (PwDs), and the majority are marginalized as they live in rural areas

with disabling barriers (Chaudhry, 2012). My doctoral research focuses on the experiences of

suffering and healing in accident survivors with locomotor disabilities. By focusing on the stories

of this population who are embodied people, with rich, unique and diverse lived experiences, I

attempted to look into their narratives of meaning-making, courage and agency. My second goal

was to have a situated understanding of disability experience within the socio-political context
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that shapes everyday challenges of PwDs. I interviewed forty participants (amputees and spinal

cord injury patients) in Delhi and Kanpur for my study.

When My Father Met with an Accident!

My initial interest in this area stemmed primarily from my similar personal experience at

home. My father met with a disastrous accident, and that was a challenging phase for him as well

as for our whole family. An accident is a sudden event, often traumatic that shatters the life-

world of the person and those related to him or her. Seeing my father closely and being able to

recognize the challenges that a person goes through after an accident gave me some insights

about life after an accident as I developed my interest further in this area. However, I was still

concerned because I am a non-disabled person and was trying to work on disability. But my

personal and up-close experience with my father encouraged me to explore this domain. I had

observed not only my father’s tryst with pain in plenitude ways, but also how the accident

changed a lot within him and consequently our whole family’s relational network. I knew that

my standpoint was a good starting point to dwell deeper into this area, and it gave me hope and

confidence to move forward with the topic. It did not make me an insider per se, but it did open

up possibilities to share a connection with accident survivors, their worldviews and experiences.

During interviews, when being asked about my motivation for this topic, I would often disclose

about my father’s accident and this in many ways used to become a connecting point for building

an emphatic bond with my participants. Being a witness to my father’s journey after accident

helped me connect not only with the participants at various levels but also on many occasions

with the family members too.

Being an ‘Insider’ as well as an ‘Outsider’ in the Field

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The process of knowledge production in ethnographic fieldwork is an embodied practice

where the researcher’s body affects the research process as it is manifested in terms of its

positionality, the way it looks like and how it is perceived to be belonging in one social group or

the other (Coffey, 1999, cited in Ellingson, 2006). During my visits to camps and other centers

for the persons with disabilities, I was often asked questions as to what I was doing in a

center/place meant for persons with disabilities and what difficulty I had (with a curious glance

to see any signs of disability in my body), together with the curiosity to know my motivation for

the topic, and at times, attempts to categorize me either as an ‘insider’ or an ‘outsider’. Being a

non-disabled researcher was not the only challenge I had when I entered the field. I realized that

I was perceived mostly as an educated and privileged female researcher. As most of my

participants were male and from low socioeconomic status, it was challenging for me to gain

their trust and work towards creating a space where they could share their personal stories. Being

aware of the embodied nature of my interactions with my participants, I was sensitive to each

participant’s body language and observant of the hindrances my identity might have posed.

Accordingly, I was aware and sensitive of minute details during interviewing, like sitting at the

same level as my participant, matching my pace of walking with them, going for home visits so

that their routine was not disturbed (especially in spinal cord injury patients). Their body

language would often show signs of discomfort, low confidence, and they were often intimidated

by my identity. I had to negotiate my way through this challenge by trying to diffuse the inherent

hierarchies. On being questioned about the importance of interviewing them, I would often tell

them that their experiences were very important in helping me know more about disability

experience, as my limited understanding regarding disability through books could only be

complete if they shared their own experiences. This, on many occasions, immediately changed
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the body posture of my participants, and they would be more confident and eager to share their

stories. They felt being worthy of attention and care, and the fact that they were contributing to

the disability discourse through me often initiated a dialogical discussion with them.

Whose Choice Counts: My Unlimited and Their Limited Freedom to Exercise Agency

Initially, I thought that my non-disabled identity might come as a serious hurdle in

getting closer to the participants and their contexts, but I realized it helped me instead. The

difference in identity between my participants and me kept me curious and drove me to know

more about them, their lives and experiences, which were different from mine. This demanded

genuine engagement where my identity acted as a background guiding force, but the focus was

on the ‘other’. The clear demarcation between what I was able to do or take for granted because

of my sense of agency and what they were unable to do due to the limits on their agency because

of altered functionality of the body on some occasions and architectural barriers on the other was

a point of both reflection and revelation for me. The recognition of the absence of embodied

agency in things important to them in comparison to my unlimited freedom to exert agency in

ways such as being able to eat with a spoon, or plan a random outing, or being able to access

most public places made me pause, think and eventually connect with them (Radley, 2004).

While this point of difference might take the form of pity for some, apathy for others and nothing

to yet many others, for me it became a major point of empathetic connection with my

participants.

The ‘Daughter’ in Me and the Unseen Bonding with the Participants

There were many instances during my fieldwork where my participants’ experiences

would take me back to my father’s experiences of being an accident survivor. Like his initial

days of irritation over lack of agency due to complete immobility, how his self-concept was
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affected due to this helplessness and inability to do things, and what was in store for him in an

uncertain future regarding his career gave him sleepless nights. On many occasions, I could

connect to the similar voices in my participants’ stories, and this made me connect to them and

their families in a much deeper way. When my participants expressed how their confidence was

affected because of the inability to do things which they could do independently earlier, like self-

care and leisure activities, it brought back memories of my father’s similar struggle as he was

caught between the need to assert his agency by doing things important to him and the

helplessness of not being able to do it. The lost embodied agency of my participants in terms of

the mundane daily tasks, which we often take for granted, made me compassionate towards their

sense of suffering. During such occasions, self-disclosure about the proximity with which I had

witnessed similar things in my family created an unspoken bond with not only the participants

but also with the family members on many occasions.

Research Reflection 4

‘Recovery in’1 Severe Mental Illness: Interpreting the Shades of Structural Violence

Severe Mental Illnesses (SMIs) include psychotic disorders that are chronic, debilitating,

and associated with complex needs (Ruggeri, Leese, Thornicroft, Biscoffi, & Tansella, 2000).

Images of altered personhood, social and personal inaccessibility, and economic dependency are

dominant in society. Psychiatric explanations and familial narratives of caregiving burden further

validate these understandings. Yet, the subjective and experiential nature of living with SMI

often gets disparaged. For instance, loss of self and identity, employment opportunities,

relationships, and future due to mental illness (Baker, Procter, & Gibbons, 2009) is often

overlooked while focusing on symptoms and support needs.

1
‘Recovery in’ SMI is a more optimistic view than ‘recovery from’ SMI (Davidson & Roe, 2007) as it helps look
beyond symptom elimination, reduction, or management, and facilitates a vision of hope and personal growth by
accepting the existence of illness.
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Redefined Role as a ‘Clinician’: The Foundational Motivation to Study SMI

My clinical psychology training at Central Institute of Psychiatry brought me closer to

the marginalized world of SMI. I observed the constant struggle and helpless despair of people

with SMI in the psychiatric setup. The inadequacy of clinical tools and positivistic

methodologies in facilitating recovery fueled my decision to engage in a phenomenological

inquiry of SMI for my doctoral research. I chose to value the first-person accounts of illness and

experiential subjectivity (e.g., Strauss & Estroff, 1989). The qualitative approach facilitated a

continual dialogue between my research stance, voices of participants, and also the silences from

the field. As a clinical psychologist, I might exclusively prescribe to a medical, person-focused

stance vis-à-vis SMI. However, as a qualitative researcher, I could look beyond my pre-existing

assumptions about SMI and appreciate the influences of structural hierarchies on experiences of

illness, treatment, and life at large.

Exposure to the ‘Gendered’ Research Space

I realized that my study, the participants, and I as ‘the researcher’ existed within

patriarchal hierarchies. I found male participants more agential while contacting me, fixing an

appointment, or even refusing to participate in the study. Women, however, always had a father,

a husband, a brother, or a son speaking or deciding for them. Despite growing feminism and

‘#MeToo’ moments, Indian women are still voiceless; more so, at the margins of mental health.

Meeting Everyday Violence Faced by Sukanya instead of Her Illness Narratives

One of the silenced voices is that of Sukanya Devi (pseudonym). She was a 37-year-old,

graduate, housewife when we first met. She was being prescribed antipsychotics for ten years.

She was married off 12 years ago, to a high-school educated man from a village, while pursuing

her postgraduate studies, maybe due to early signs of psychosis. Resultantly, she had to abandon
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her education and any dreams of a job. Presently, she was made to visit a private psychiatric

clinic, on her father’s insistence; every time she visited her maternal home. It was here that I

would meet her. Every conversation I had with her was marked by an absence of illness

narrative, despite repeated attempts of the father as well as me, making me question her

suitability for the study. She narrated the disparity in her living conditions and that of her

parents, the everyday violence she had to live with, and experiences of the loss of respect, voice,

and agency.

“Everybody screams at me. They hit me. My brother-in-law grabbed my throat one

day.”

“I only know how I am living in that house. They found a very simple and straight

(wife in me). My younger sister-in-law keeps scolding me. She fights with me

unnecessarily. She treats me like a child. Keeps telling me to do like this, to do like

that. Do I not know anything?”

Even though Sukanya Devi refused to talk about her ‘illness’, she voiced how ‘being ill’

facilitated experiences of disrespect and violence. Yet, these accounts were just a source of

unrest and doubts about her fitness as a research participant until I came across a documentary on

‘paros’ or bridal slaves of India (Al Jazeera, 2011). Poverty facilitates slavery for ‘paros’ who

end up losing respect, social status, and claims over property. Just like Sukanya Devi, who lost

respect as well as any rights to opine, decide, or refute after marriage because of her illness.

However, ‘being a woman’ seems to increase manifold the experiences of marginalization and

voicelessness either in the context of mental illness or poverty.

Connecting with Sukanya: Outgrowing the Typical Clinician’s Role

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Holliday (2010) says that a researcher needs to submit to data to allow findings to

emerge, and use personal knowledge to engage with the process (cited in Flogen, 2011). I

realized that excluding the patriarchal context while focusing on losses related to SMI created

hurdles in getting closer to the subjective experiences of the participants. I recognized that

focusing on symptom amelioration, like a clinician, meant losing an opportunity for a

meaningful connection. I also realized that Sukanya was being impacted by the same patriarchal

norms that I frequently came across in the responses of male and female participants, as they

responded differently to my role as a female researcher. I was able to not ‘lose the complexity of

illness experience’ (Pascal & Sagan, 2016), by submitting to Sukanya Devi’s narrative, and using

my knowledge of power and politics of patriarchy to engage with her.

Critical reflexivity during fieldwork and beyond brought forward awareness of multiple

complexities related to SMI. I realized that clinical knowledge might not always be the answer to

the sufferings of people with SMI. I understood gendered experiences of SMI by accessing

personal experiences with patriarchy, theoretical underpinnings allowing to look beyond

biomedical explanations, academic belief in a transactional epistemological stance, and an

ideology attuned to acknowledging ‘participants as experts’. This insight has facilitated my

understanding of the narratives of loss, coping, ability, and hope of participants in their journeys

of recovery and meaning making.

Research Reflection 5

Listening to the Sound of Silence: Reflections on My Research with the Homeless Mentally

Ill

I belong to a city that outsiders perceive as the ‘city of joy’, Kolkata. My city never

sleeps, always bustling with colors and festivities. Within that, parallelly runs another city which
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struggles daily against poverty, crime, homelessness; and amidst that darkness, some are

invisible lingering like shadows—the homeless mentally ill (HMI). HMI has always been one of

the most vulnerable sections of the society. Involuntarily marginalized, homeless people are

susceptible to enter the vicious cycle of mental illness and poverty, succumbing to its atrocities

and trapped in it due to lack of resources. However, the process of ‘medicalization’ of such a

social problem like homelessness has not only made ‘symptom reduction’ its focus but has also

limited our understanding of this population holistically, restricting it only to the disability lens.

HMI: Intrigued by the Dark Corners of the ‘City of Joy’

All my life, every day, I had come across them at almost every corner but never knowing

who they were, where they came from, why they were on the streets or whether anyone really

cared! I chose to indulge myself in the quest of seeking these answers through my doctoral

research project by studying their lived experiences through an exploration of their life-stories.

Being critically reflexive while conducting life-story interviews in two shelter-houses in Chennai

and Kolkata became an eminent source of data which not only enriched my research experience,

but also helped me understand the context of my participants amongst the varied socio-politico-

cultural dynamics. I initiated my fieldwork in Kolkata with the help of a non-governmental

organization (NGO). This NGO had been struggling for a decade trying to provide community-

based rehabilitation to the HMI population despite all odds to make them once again be a part of

the society and live with dignity.

Receiving a Blunt ‘No’ to an Entry into Ms. R’s World

I entered the field with confidence. Having the tag of a ‘clinical psychologist’ made me

believe that I have in my reservoir all that were required to make my participants open up in

interactions with me. Was I aware of the hierarchy that I carried with myself? Yes. Was I doing
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anything to get rid of that? No. Because it was multifaceted, it would not be possible to get rid of

the hierarchy or deny it, in the system where we belong. One could just be critically reflexive to

let it not interfere, but one could not do away with it. Thus, being an ethnographer trained in

clinical psychology when I attempted to interview Ms. R, a resident of the shelter-house at

Kolkata, I was looking forward to collecting ‘rich data’. There were primarily two reasons: first,

I was already having a good flow of data from my other participants that boosted my belief.

Second, Ms. R, a 48-year-old Bengali speaking woman had clinically recovered, running her

own tea stall with support from the NGO. She met my ‘inclusion criteria’, and her current status

made me hopeful about a ‘good interview’.

“I do not want to talk to you. I don’t like you. You can sit here all day long if you want,

but I will not talk to you,” said Ms. R. I was speechless! I did not know how to convince her for

the interview. I modestly mumbled, “It’s okay if you do not want to talk about your past life. Can

we just chat about your tea shop, this business that you run?”. “No!” she retaliated. Muttering a

soft “thank you”, I left her tea shop. This was the first time that I got rejected by a potential

participant during fieldwork. I felt insulted; a burning sensation in my eyes. On my way back

from the tea shop to the female shelter-house at Kolkata, I kept pondering on what exactly went

wrong! What was so unacceptable in my demeanor that provoked her. After all, I was a qualified

clinical psychologist, trained in ‘building rapport’ and ‘breaking the ice’. I needed to understand

where that ‘No’ was coming from. I had to understand the source of that strength which let her

spontaneously overcome the ‘researcher-participant hierarchy’ that was subtly but fiercely

established in all strata of the system (institutions that provide care).

‘No’ as a Symbol of Fight against Structural Violence

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I started going through her case files to have my bewilderment answered and understand

her context but got little in return. She vaguely recalled fragments of her past life but had no

recollection of how her illness started and how her life ended up being lived on the streets. She

was identified at Sealdah Railway Station in West Bengal in April 2009, and diagnosed with

schizophrenia. She had been one of those few individuals with whom the NGO at Kolkata started

its journey. She was the first person to speak about the necessity of a shelter for homeless women

like her. “She was one of the spokespersons for the outreach clients… took the initiative to cook

their meals… acquired utensils and fuel on her own and prepared meals to the exact proportion

for 18 people so that nothing was wasted,” shared Ms. C, the then outreach social-worker. She

was also one of the founders of a self-help group of the NGO, and had been running the road-

side tea stall along with two other fellow residents.

Connecting with Ms. R’s Sense of ‘Autonomy’

These new insights into her social and personal context encouraged me to re-evaluate my

empathic connection with her from a fresher perspective. I chose to respect her ‘decision’ not to

revisit those traumatizing days of suffering. I made a conscious choice of acknowledging the

‘autonomy’ that had been core to her survival. I could realize that I had a choice to initiate

exploring the world of an extremely vulnerable group (HMI). Similarly, she also had a choice or

resolve not to talk to a person like me who belonged to the ‘other’ world (oppressive state,

society, and family) whose hegemony she had been fighting against.

Ms. R was another reverberating example of the coerced ostracism that the HMI have

been living through under the hegemony of the ‘disability lens’ imposed upon them by the state,

the society, and the family. Fighting against that current, she had been able to come back to the

mainstream with that same vigor and strength which provided her the courage to deny me an
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interview. Her zeal to establish an identity of an empowered woman, outwitted many of the

challenges faced on her way. And thus, even her silence had the power to make her voice be

heard in her own way, not the way I or the society at large, needed her to speak (Sampson,

1993).

Research Reflection 6

Institutionalized Clinical Care for Mental Illness: Reflections on Adopting a Critical

Interdisciplinary Perspective

The Epistemic View of Patient as ‘Person’

This piece of writing is a part of my fieldwork experience while doing Masters in

Psychology at the University of Delhi. This fieldwork was being conducted at the Institute of

Human Behavior and Allied Sciences (IHBAS), Delhi. Being attached to the Department of

Clinical Psychology, our (i.e., field workers) job was primarily to conduct psychological testing

as part of the clinical assessment of patients referred by the Department of Psychiatry. Those

students (including me) who were excited by our critical learnings of the field of clinical

psychology could ‘know’ the patient as a ‘person’ or as a lived reality beyond the diagnostic

label assigned to him or her. So, we were the ones who meandered into the personal, social and

cultural context underlying the surface presentation of illness, and thus could also see the

implications of the assigned label in the very context which shaped it.

Anju’s Delusion (or Normalized Patriarchal Violence?)

Anju (name changed) happened to be my patient for clinical assessment. Anju was

admitted to the private ward of the hospital and was undergoing treatment. Her hospital record

file showed the label of paranoid schizophrenia. I was asked by one of the clinical psychologists,

who was also my supervisor, to ‘talk’ to Anju. During the first session when I asked her about
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her complaints she said, “I do not eat onions. I do not eat food that is not cooked at home and I

offer prayers. I get up at 4 a.m., take bath, and pray to the God”. She reported that she has been

following the Brahmakumari sect for the past six years and has been a celibate since then. As the

session progressed, it unfolded that she believed her husband to be having extramarital affairs

and reported having caught him red-handed and even having confronted him on a few occasions,

following which she was mercilessly thrashed by him.

From a clinical perspective, everything was ‘just’ in place for me. Anju’s reporting of her

husband’s illicit relations was part of her ‘delusional framework’. However, I felt the need to talk

to her husband once to gain his perspective on Anju’s condition. Without an inkling of doubt, I

happened to ask him if she had any doubts regarding him too. To my utter surprise, the husband

very casually accepted having a relationship with a girl, which, according to him was severed by

him for it interfered with his family’s health. Apart from acknowledgement of his illicit

relationship, he also seemed to exaggerate Anju’s ‘symptoms’ as reported by herself. This was

the moment of great ‘unease’ for me with my own understanding of Anju, in the light of the

diagnostic label attached to her, and, also a new beginning of my relationship with her based on

my ‘revised perspective’ of her suffering.

Being a Confidante of Anju in Her Severe Doldrums of Life

Henceforward, my relationship with her changed drastically as I could empathize with

her ‘relational void’ and the trauma she had been subjected to by her husband. Having sensed my

willingness to give space to her suffering, Anju too expressed a desire to talk more with me.

What unfolded in the following sessions was Anju’s narrative of how her husband has been

torturing her both physically and mentally. He had even tried admitting her to the psychiatry

ward of one of the private hospitals in Meerut and got her discharged only after one of the
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doctors cautioned him against it. What also unfolded were the brutal tales of domestic violence

which she had been suffering at the hands of her husband and, her dilemma and helplessness

around separating from her husband. Anju also had a son whom she did not want to leave, but

could not muster the courage to have a life of her own without her husband. She reported having

gone to the police station once, but could not dare to file a case against him in spite of the

repeated assurances from the police officer (station house officer).

In the sessions thereafter, apart from administration of psychological tests such as Bender

Gestalt Test, Sentence Completion Test, and Rorschach Test, the relevance of which was as

ambiguous to me as to Anju herself, I happened to hear her complaints of feelings of nausea,

excessive sweating, shivering in legs, and inability to sleep at night. Besides, she also suffered a

depleted sense of self-esteem as she thought of herself as not being worthy enough of her

“husband’s attention”. As my relationship with Anju traversed from the clinical category of

paranoid schizophrenia to a more contextualized, realistic and empathetic space, it gave her

much more space to voice her feelings of pain, resentment and helplessness. Her narrative of

herself moved from behavioral manifestations (like not eating onions, getting up early, praying

to God and remaining a celibate) to her lived reality—her inner conflicts and dilemmas around

separating from her husband, and conflicts regarding her own self-esteem for not being a “good

wife”.

Anju got discharged from the hospital with the final impression, “No active

psychopathology could be discerned but some underlying psychopathology is quite evident.” My

last session with her revolved around her suffering, around the pain inflicted by her husband, and

her acute sense of helplessness about being able to separate from her husband anticipating

absolute resistance for such a step even from her maternal family and her own son.
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Discussion and Conclusion

Through the reflections on our qualitative studies on varied topics related to health and

illness experiences, we have attempted to provide insights into the ways critical reflexivity had

facilitated the process of carrying out the deconstructive as well as reconstructive aspects of

QHR. In particular, we focused on motivational and academic preparations, unravelling

hierarchies within researcher-participant relationship, and the process of building empathy- and

trust-based researcher-participant relationship, associated with the practice of critical reflexivity

within QHR.

As our first three research reflections illustrated, the deeply personal interest in the

phenomenon (caregiving experience of ASD parents, TGT among survivors of political violence,

and disability experience) laid the motivational as well as academic foundation for the research

journeys. Further, it was the strong theoretical as well as ideological inclination towards

addressing some critical issues of vulnerable populations (neglected ‘personal’ recovery among

SMI persons, silenced voices of HMI, and institutionalized care of mentally ill persons) that

oriented the other three researchers to sincerely engage with their participants.

Our personal interest or theoretical and ideological inclinations allowed us to be sensitive

towards the experiences, identities as well as questions of the participants. In all our reflections,

one can note our sustained engagement with the challenges or questions that arose in the field

that brought us closer to the hierarchies surrounding their lives as well as the researcher-

participant relationship. The instances of ‘‘gendered’ nature of parents’ experiences’,

‘normalized victimhood of the survivors of anti-Sikh riots’, ‘researcher’s unlimited and PwDs’

limited freedom to exercise agency’, ‘meeting everyday violence faced by Sukanya’, ‘‘No’ as a

symbol of fight against structural violence by Ms. R’, and ‘normalized patriarchal violence of
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Anju diagnosed as delusion’, illustrated the cultural, socio-political or institution-based

hierarchies in the lives of participants in the six research reflections respectively. Similarly,

instances of ‘whether to align with the institutional care for ASD’, ‘negotiating survivors’

suspicion over my motives’, ‘being an ‘insider’ as well as an ‘outsider’ in the field’, ‘being

puzzled by meeting everyday violence faced by Sukanya instead of her illness narratives’,

‘receiving a blunt ‘no’ to an entry into Ms. R’s world’, and ‘the epistemic view of patient as

‘person’’, brought us closer to the differences in or the hierarchies of standpoints within the

researcher-participant relationship in the six narratives respectively.

Besides the insights about the above-mentioned deconstructive features of QHR, being

critically reflexive also paved the way for building empathy- and trust-based researcher-

participant relationship. In the first three research reflections where one can notice that an

experience of the researchers—‘engaging with a close friend who is an ASD parent’, ‘personal

experience of ‘loss’’, and ‘father’s accident’—similar to that of the research participants

facilitated our empathic connection with the participants. In the last three research reflections,

one can notice that it is the experience of ‘outgrowing the typical clinician’s role’, ‘shock over

rejection as an interviewer and then connecting with Ms. R’s sense of autonomy’, and ‘critical

understanding of the gulf between the lived realities of a ‘person’ and diagnosed ‘patient’’ that

made us question our role as a researcher, and realize that we are also fellow human beings who

need to listen to the spoken and unspoken voices of the participants. This also helped forming an

emotional or empathic connect with the participants.

By presenting systematic and illustrative research reflections, we have elaborated on the

pivotal role of critical reflexivity in QHR as we delved deeper into addressing the issues of

motivational and academic preparations, critical awareness of the hierarchies shaping

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participants’ experiences, and developing empathic understanding. In doing so, we have

extended the concerns of Gemignani (2017) and Gergen (2015) about getting close to the

experiences of participants (through the use of critical reflexivity) from being a meaningful

academic debate to its possible implementation in ethnographic or qualitative research in the

field of health sciences. Indeed, in case of exploring ill or distressed persons’ experiences, such

concerns become pivotal as these are linked with the possibilities of healing through the

empathy-based research relationship (Frank, 2000; Kleinman, 1988b; Priya, 2010, 2012).

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