Article from ejc/rec
Electronic Journal of Communication
Volume 9 Numbers 2, 3, 4 1999
Lived Experience in the Context of Adolescent Illness
SENSE-MAKING AS THEORY AND METHOD FOR
RESEARCHING LIVED EXPERIENCE:
AN EXEMPLAR IN THE CONTEXT OF
HEALTH COMMUNICATION AND ADOLESCENT ILLNESS
Linda Wheeler Cardillo
Ohio State University
Columbus, Ohio USA
Abstract. This essay explores the possibilities offered by
as an exceptionally useful theory and method for studying lived experience.
Following an overview and explanation of the theory and method, the use
of Sense-Making is demonstrated through the description of a case study
of health communication in the context of adolescents dealing with chronic
health conditions. In theory and practice, Sense-Making Methodology provides
a satisfying response to challenges posed to qualitative researchers by
postmodern, postcolonial, and feminist critiques, including questions about
the ethics of representation, interpretation, the role and voice of the
"Other" in research, and the ways that research practices too
often serve to further objectify and dominate those who are already systematically
disempowered in society. Chronically ill adolescents are an example of
a population for whom issues of power, control, autonomy, and representation
have particular salience, with implications for research methodology and
methods and for everyday communication interactions, including communication
in health care settings. Sense-Making is particularly useful in such contexts
because it provides both a way of conceptualizing lived experience and
a way of dialoguing about it, and because it explicitly mandates and enacts
the privileging of the voice of the Other as theorist of his or her own
When I was diagnosed with leukemia -- basically your life is, the
control of your life is, taken away and placed in the hands of doctors.
And I hated that. I like to have control over my life. I like to know what
I'm doing and when I'm doing it, and when I want to do it. And so, I had
to take control of some situations, because it just felt like the old me,
the athletic -- the everything me, was put in a box, and this new person
existed, a sick person with no control over their life. And I just needed
to get that old person back. But it never actually came back, and I like
the new me, 'cause I've changed so much because of it; I like myself a
lot -- I love myself more than I did before I got sick. I'm a much happier
person. And so, I think a lot of good came out of me taking control over
my life because that gave me the confidence that I can take control over
my life. . . . I have the right to tell people, "No, you can't do
this." ("Jennifer," 17-year-old leukemia patient, now
in remission; from a Sense-Making case study of adolescents with chronic
The future of ethnography lies in the ability of researchers to understand
how Others articulate their sense-making of their lives, while at the same
time having the perspicacity to reveal the relations of power in which
these Others' sense-making is articulated. (West, 1993, p. 214)
Early in 1997, as a researcher and scholar of health communication and
research ethics, I embarked on a study of adolescents with chronic health
conditions and their interactions with their health care providers and their
caregiver/advocates. As the mother of a (now-grown) adolescent boy who,
since birth, has had a variety of ongoing health conditions necessitating
extensive interactions with the health care community, I was drawn to this
subject by my experiences, observations, and concerns about the many important
Beyond my personal experience, I had also found myself frequently distressed
and impatient at what I saw as gaps in the health communication literature
in which I was immersed in my academic life (e.g., Burgoon, Parrott, Burgoon,
Coker, Pfau, & Birk, 1990; Holloway & Rogers, 1992; Parrott, Burgoon,
& Ross, 1992; and Street, 1991). I was dissatisfied with health communication
scholarship that tends toward administrative rather than critical or emancipatory
research, a biomedical rather than a holistic or "ontological"
conception of health (Zook, 1994), and an outsider rather than an insider
perspective on the experience of illness and health (see Thorne & Paterson,
1998, for a discussion of a gradual movement toward inclusion of an insider
perspective of chronic illness within qualitative nursing literature over
the past two decades). I was particularly disturbed by the fact that health
communication research involving children and adolescents, however well-intended
and useful, too often reflects an authoritative, superior, paternalistic,
system-oriented perspective that aims at maintaining control and order and
gaining compliance, while making judgments about what children in general
need in the absence of any genuine consideration and valuing of individual
children's experiences and perspectives. Research practices thus mirror
and reinforce seriously problematic health care practices in this context.
I found this approach, both in health care practices and in the research
that perpetuates those practices, to be disrespectfully dismissive of adolescent
patients, as well as potentially harmful, especially in light of adolescents'
crucial developmental tasks of self-definition and of gaining and asserting
independence, autonomy, and a greater degree of control over their lives
-- a process that is already radically threatened and disrupted in the context
of chronic illness or disability (Eiser, 1993; Garrison & McQuiston,
Underlying and informing my concerns about the absence of the perspective
of adolescent patients in much of the health communication literature are
fundamental and crucial challenges increasingly raised by postmodern, postcolonial,
and feminist critiques in discussions of methodology and ethics in ethnography
and in qualitative research generally, including issues involving the ethics
of the treatment and representation of research subjects -- those whom we
presume to set apart and study as "Others."  For example, as
a researcher attempts to understand and describe any group, as well as to
help her audience to gain an understanding of the researched group, what
role is given to the Other in relation to the researcher and in relation
to dominant social structures and discourses? Are we, as researchers and
readers, willing to trust the sense that Others make of their lives, or
do we persist in imposing our own "expert" perspectives and agendas
throughout the research process? To what degree can we assume that Others
can speak with understanding, insight, and "accuracy" about their
experiences and their social world? What credibility do we grant to an individual
member of a group? To what extent can the voice of one representative of
a group or culture speak for the collective? What are ethically and theoretically
defensible interviewing methods, methods that procedurally enact a deep
respect and regard for the dignity and wisdom of the Others we study? All
of these challenges have important methodological implications for all research,
including research of health communication and the lived experience of health
Given all these concerns, I was particularly interested in exploring, from
the perspective of the adolescent, issues of power, control, and autonomy
in the context of adolescent chronic illness. Adolescent chronic illness
has been studied in medical and nursing research, but has received little
attention in health communication literature, and in neither discourse has
the adolescent's perspective on the experience of chronic illness been much
sought or valued. Yet, this is a terrain in which health communication scholarship
is sorely needed, since chronic health conditions among children and adolescents
are a significant and growing health issue (Gortmaker, Walker, Weitzman,
& Sobol, 1990; Hoffman, Rice, & Sung, 1996; Newacheck & Taylor,
1992). Furthermore, chronic health conditions limit in some way the child's
ability to function fully in the environment, and such conditions necessitate
intermittent or continuous interactions with the health care community and/or
ongoing treatment regimens involving family members and/or other caregivers
(Thomas, 1987). Moreover, children and adolescents with chronic health conditions
are at significant risk for short- and/or long-term psychosocial difficulties
(Gortmaker, et al., 1990; Sloper, Larcombe, & Charlton, 1994; Weiland,
Pless, & Roghmann, 1992). Issues of power in this context, including
the degree to which the adolescent's ability to speak, make decisions, or
implement treatments for him- or herself, are an important consideration
(Ault, Rinehart, & Samenfeld, 1991; Rinehart, 1991; Rinehart & Samenfeld,
1991). Thus, for my research, I wanted to learn more about how the adolescent
patient is affected, particularly psychosocially, by control -- or loss
of control -- over his or her body and over decisions made in regard to
his/her health. I wondered about the impact on the young person of different
communication patterns (e.g., effects of talking to or about or over the
adolescent patient) and content (e.g., information discussed in the child's
presence about his or her condition, diagnosis, and prognosis). I wanted
to better understand how different kinds of communication among the adolescent
patient, parents, and health care providers might reduce or increase the
trauma, pain, and lingering, perhaps life-altering, effects of difficult
health care experiences for the adolescent. Most importantly, I wanted to
gain a deeper understanding of these issues through a careful exploration
of an adolescent's experience of living with a chronic health condition
from the perspective of the adolescent.
In order to explore these issues, I drew upon Sense-Making Methodology,
which provides solid philosophical underpinnings as well as a specific methodological
structure that enables both researchers and subjects to attend carefully
to subjects' first-hand accounts of the ways in which they make sense of
themselves and the world around them. Sense-Making offers a helpful way
of thinking about, studying, analyzing, and theorizing human behavior, both
at the individual and collective levels (Savolainen, 1993). By providing
a brief overview and explanation of Sense-Making as theory and method and
a discussion of my project as an exemplar of its use in research of health
communication in the context of the lived experience of adolescent illness,
I hope to show how Sense-Making Methodology can help in addressing some
of the complex issues that confront all human science researchers, including
those studying health communication and the experience of illness.
The Theory of Sense-Making
Fundamentally, Sense-Making is a meta-theory of communicative practice
and the internal (cognitive, emotional, physical, and spiritual) and external
(procedural), conscious and unconscious, deliberate and spontaneous human
activity and information processing by which people construct "sense"
of and the ability to move through their worlds. As Dervin explains, "some
people call Sense-Making a theory, others a set of methods, others a methodology,
others a body of findings. In the most general sense, it is all of these.
It is, first, and foremost, a set of meta-theoretic assumptions about the
nature of information, the nature of human use of information, and the nature
of human communication" (Dervin, 1989, pp. 62-63).
A core assumption of Sense-Making theory is that while reality is in part
ordered, it is also in part chaotic and in part continually evolving. The
same is true of human beings, resulting in humans' constantly being confronted
with both ontological and epistemological "gappiness" (Dervin,
1999, p. 10). "Discontinuity is an assumed constant of nature generally
and the human condition specifically" (Dervin, 1992, p. 63). Discontinuities
(gaps) exist between entities, between times, between spaces, between reality
and human sensors, between human sensors and human minds, between mind and
tongue, between mind and heart, between human at time one and human at time
two, between human one at time one and human two at time one, between human
and culture, between culture and culture, and so on.
Sense-Making assumes, then, that as individuals make their way through situations,
they constantly encounter gaps or discontinuities -- barriers or blocks
to movement, gaps in their understanding, gaps in the sense they are trying
to make. "Gaps are always cognitive (i.e., constructed in the head)
and sometimes are overbearingly physical as well (i.e., coping with illness)"
(Dervin, 1989, p. 77). In their repeated, everyday confrontations with discontinuities,
humans are compelled to construct strategies to bridge the gaps they perceive
in order to move ahead through time and space. Sense-Making posits this
ongoing gap-bridging process as the essence of human sense-making, mandated
by the human condition.
Thus, at any given point in any situation, an individual may find her movement
through time-space blocked. She may have questions, confusions, emotions,
physical reactions, and needs that propel her to bridge the gaps she has
encountered through any number of strategies: drawing, for example, upon
hunches, intuitions, feelings, emotions, dreams, visions, illusions, memories,
and stories; formulating ideas, cognitions, images, and/or assessments that
lead her to be able to use the information available to her (Dervin, 1999).
She may experience these outcomes as either helps or hurts; in any case,
she has faced the barriers, bridged the gaps she has encountered, and made
sense of her experiences so that she is able to move on.
While Sense-Making's attentions to time, space, movement, and gap posit
movement as "the one irreducible of the human condition" (Dervin,
1999, p. 12), this movement through time and space is not viewed as necessarily
a linear process. It is assumed, for example, that individuals will recall
their experiences in whatever order they find useful, or in no particular
order at all. "When seen from the actor's perspective, time can be
constructed in a variety of ways, linear, cyclically, and otherwise. Also,
situation-facing may or may not be goal-oriented in the usual sense"
(Dervin, 1992, p. 70).
Although it is assumed that individuals create their own sense of the world
and themselves from moment to moment, Sense-Making does not take a radical
constructivist perspective; the existence of reality and facts and order
is not rejected, but it is assumed that order is always potentially discontinuous
across time and space, as well as potentially continuous (although only
sporadically), and that order and reality are not directly accessible by
humans, who are constrained in their understanding by their own and others'
gaps (Dervin, 1992, p. 63). In the face of this discontinuity and uncertainty,
Sense-Making theory mandates a humble search for facts and understanding
that are useful and that hopefully can improve the human condition.
Sense-Making's fundamental assumption of the discontinuity of reality,
knowledge, and knowers has crucial implications for research. For example,
a common hypothesis in the literature on adolescent chronic illness is that
health locus of control is a predictor of compliance with doctors' orders
and knowledge (Iannotti & Bush, 1993; Tinsley & Holtgrave, 1989).
Several assumptions underlie this hypothesis: one, health locus of control
is assumed to be a personality trait that is fixed and stable within a given
individual across time and space; two, compliance is assumed to be always
a desirable and positive behavior within the medical context; and, three,
doctors' orders and knowledge are assumed to be certain and applicable to
all patients with a given diagnosis and prognosis. Sense-Making, with its
assumption of discontinuity, would shift the focus to how patients are potentially
different across time and space and would examine the conditions under which
patients are flexible or inflexible. Sense-Making would also assume that
non-compliance might be a rational and responsible response based on the
sense that the individual has made of her situation. Sense-Making would
trouble the presumption that physicians' expertise and authority should
automatically prevail in health care interactions and would, instead, place
the doctor's expert medical knowledge into communion and contest with the
patient's particular and personal knowledge of her own body.
Also important to Sense-Making theory is the fact that it is both individualistic
and structural in its foci. Neither the human subject nor structures and
institutions are given absolute ontological status, as both are seen as
always potentially orderly and disorderly, rigid and flexible, and as continually
evolving (Dervin, 1999, pp. 11-12). Dervin (1992) argues that, "while
current contests in the social sciences seem to pit individual against structure
and conceptualize the structure as an across-time-space entity that persists
despite individuals, in fact they are part of a whole" (p. 67). Sense-Making
assumes that individuals are not entirely bound by culture, that they can
act systematically and consciously to free themselves, to some extent, from
cultural, historical, and institutional constraints. Savolainen (1993) explicates
Dervin's perspective further:
Individuals constitute society/culture/institutions and these collective
entities have no existence without the energizing behavior of individuals.
. . . Individual human beings exist in structures, contexts, institutions,
and cultures. They are constrained and informed by these, but never entirely,
because there is no complete isomorphism between structure, context, institution,
culture, and the individual human mind. . . . Institutional (societal,
cultural, economic) structures form a general framework or a maneuvering
space for individual actors producing and reproducing (energizing) those
structures. (p. 20)
This view of the relationship between individual and structure provides
an important philosophical foundation for Sense-Making's mandate to privilege
the perspective and voice of the Other, while attending to both agency and
structure in researching, describing, interpreting, and theorizing social
groups. For example, using Sense-Making theory in conducting health communication
research would mandate delving into individuals' narratives of their lived
experiences of illness and health while attending to how those narratives
both constitute and are constrained by structural forces, including the
health care system and cultural discourses surrounding health and illness.
The core assumptions of Sense-Making theory provide a framework and impetus
for a set of methods, including the Sense-Making interview, by which to
study and understand human sense-making. Sense-Making's methods, as methodological
implementations of Sense-Making's meta-theory, need to be seen as flexible
and adaptable to specific contexts, rather than being applied in a recipe-like
manner. The most complete, in-depth form of the interview is called the
Micro-Moment Time-Line interview (see Dervin, 1992, pp. 70-80, for description
and exemplars). In the interview, respondent and interviewer together explore
the respondent's journey through a situation he or she identifies. The journey
is seen as a series of moments or steps in the situation, with each step
potentially a sense-making moment. Focusing on each step in turn, the respondent
is encouraged through a variety of questions to identify the discontinuities,
hurts, and helps he or she experienced or perceived at that time. This process
brings to light the gap-facing, gap-defining, and gap-bridging which comprise
the cognitive, emotional, physical, and spiritual strategies the individual
used in making sense at that moment (Savolainen, 1993, p. 17). The sense-making
moment is captured metaphorically in the Sense-Making Triangle of situation-gap-uses/helps.
The metaphor "directs attention to the steps the actor takes as defined
on the actor's own terms to address the gaps he or she faces as defined
on his or her own terms" (Dervin, 1992, p. 70).
The Sense-Making interview is designed to be as non-impositional as possible
in order to allow the respondent's own definition and understanding of his
or her experiences to emerge. Therefore, in order to help to ensure a process
that privileges the voice of the respondent, the interviewer engages in
minimal naming or "noun-ing." Only enough is said to focus the
interview on the concept or phenomenon being studied. In addition, Sense-Making
questioning, with the interviewer maintaining an attitude of "neutral
positive regard" (from Carl Rogers' (1959) "person-centered"
approach to dialogue), helps to guard against the tendency for the interviewer
to shape the respondent's definitions or responses inappropriately through
the framing of leading, hypothetical questions and suggested options for
responses and/or through verbal or nonverbal feedback, reactions and commentary.
It is the respondent who names the situation, describes what happened, and
identifies the gaps, the helps, and the hurts, describing her questions,
confusions, feelings, emotions, ideas, conclusions, understandings, etc.
The interviewer's job is to listen attentively and non-judgmentally for
the respondent's perspective, taking care to avoid, as much as possible,
imposing the interviewer's perspective on the respondent (Dervin, 1989).
Sense-Making also focuses attention on issues of power. "By focusing
on motion and movement, the Sense-Making interview mandates attention to
the variety of forces which impel or assist movement, including the force
of power" (Huesca & Dervin, 1996, p. 14). Each Sense-Making interview,
therefore, attends to issues of power through Sense-Making questions that
explore what hindered, constrained, or blocked the actor's movement, as
well as those that focus on what helped or facilitated movement. In many
interviews, respondents are asked how they see their questions, confusions,
feelings, ideas, conclusions, etc., relating to power in society.
Sense-Making interviews have been useful in studies of a wide variety of
phenomena and social groups. Some Sense-Making studies are large scale,
usually employing many shorter interviews, and provide extensive data for
sophisticated statistical analysis (e.g., Dervin, Harlock, Atwood, &
Garzona, 1980; Shields & Dervin, 1998; Shields, Dervin, Richter, &
Soller, 1993). However, a Sense-Making study might also be confined
to just a few subjects or might be a case study of a single individual (e.g.,
Clark, 1995; Higgins, 1995). While interviews with many members of a group
provide a foundation for generalizability, statistically verifiable interpretations,
and strong conclusions, qualitative theorists have long argued and demonstrated
that a case study based on a single, in-depth interview can yield extremely
rich data, insights, and understanding; can provide unique and powerful
challenges to generalizations; and can serve a useful heuristic function
by suggesting new hypotheses for further research (Berg, 1998; Edwards,
1998; Feagin, Orum, & Sjoberg, 1991; Stake, 1994). The explicit mandate
of Sense-Making that all knowledge claims be humbled and repeatedly circled,
as well as the triangulation process that is inherent to the entire Sense-Making
interview process, helps to reduce the possibility of misinterpretation
and strengthen the potentials for validity while at the same time humbling
the very concept of validity.
An Exemplar of a Sense-Making Study
A review of a specific Sense-Making study may help to illustrate the
usefulness of Sense-Making for researching communication in the context
of adolescent chronic illness and for humanistic research generally, as
well as clarify the ways in which concepts such as the voice and perspective
of the Other, representation, and self-reflexivity are enacted in the practice
of Sense-Making research. I chose to ground my study in Sense-Making theory
and method because of Sense-Making's attention to and privileging of the
perspective and voice of the subject, speaking on his or her own terms --
crucial considerations for me, given my theoretical and ethical concerns
about the erasure of adolescents' accounts of their experiences of illness
in health communication research.
In theory and practice, Sense-Making explicitly makes Others theorists of
their own experiences and the world. Respondents do not simply relate their
experiences; rather, Sense-Making theory assumes that through the in-depth
Sense-Making interview process, respondents describe, explore, analyze,
interpret, and theorize their own understandings of and feelings about their
experiences and the world through which they move. Dervin, drawing upon
ideas of Paolo Freire, refers to this as "conscientizing." "When
sense-making [sic] interviews are at their best, [there is] a consciousness-raising
and therapeutic value in the process for respondents" (Dervin, 1992,
p. 73). Furthermore, in this recognition of the Other as theorist, researcher
and subject become genuine collaborators in the generation of knowledge,
and the respondent is treated accordingly. "The respondent is conceptualized
as a colleague. No element of the study purpose is hidden in any way"
(Dervin, 1992, p. 73). In this, the theory and practice of Sense-Making
resonates with the ideas of many social scientists, including those of anthropologist
Dell Hymes. As Hymes (1969) insists,
If there is to be a future for anthropology in a democratic world,
the ethnographic relationship must be developed as a mutuality not only
of trust, but also of knowledge. Each person, after all, is to some considerable
extent an ethnographer of his or her own world, having acquired a tacit
knowledge of it. . . . An essential part of ethnography is to learn, and
formulate, what others already in a sense know. Heretofore, the ethnographer
has mediated between such specific knowledge and general knowledge usually
entirely in the direction of the latter. . . As far as possible, the mediation
must go also the other way -- even primarily the other way. (pp.
This was an approach I had found to be woefully missing in many health
care encounters (especially those involving children) and in most research
on child and adolescent patients (e.g., Kelley, Alexander, & Morris,
1991; Naber, Halstead, Broome, & Rehwaldt, 1995). Sense-Making Methodology,
with its underlying philosophical assumptions mandating attention to, respect
for, and the privileging of the individual's perspective, as well as its
attention to issues of power, struck me as both ethically satisfying and
To gain insight into the adolescent patient's perspective, I conducted a
Micro-Moment Time-Line interview with a young woman, "Jennifer,"
who had been diagnosed with leukemia at age 14, three years prior to the
interview. The Micro-Moment Time-Line interview, with its detailed and painstaking
circling and re-circling of the situation, gaps, and helps/hurts, has been
found to be the most appropriate and useful form of the Sense-Making interview
for exploring contexts that are potentially deeply meaningful for the respondent.
Because I was specifically interested in exploring issues of power, control,
and autonomy in the context of adolescents' experiences with health care
providers and caregivers, I elected to focus the interview on my respondent's
worst remembered health care experience. I reasoned that this focus would
likely elicit from my respondent the strongest feelings and most telling
and powerful responses in this regard.
When I asked Jennifer if she would be willing to be interviewed about her
experiences dealing with the health care community, she readily agreed.
As mandated by the Sense-Making approach, I briefly explained the basic
ideas of Sense-Making, which she appeared to find quite interesting. I also
described my research interests (my naming of the context) and the procedure
we would be using:
I'm interested in how young people who have had to deal with serious
long-term illnesses or conditions feel about their experiences during doctor
appointments, hospitalizations, tests, treatments, procedures, or any of
the times when they are interacting with the health care system and health
care providers. I'm interested in how kids feel about how their doctors
and other health care providers talk with them and with their parents,
how much control kids feel they have or don't have in these situations,
and how they feel about that. I'm especially interested in how young people
feel about themselves in these situations. What I'd like you to do is to
think back over all the times you've interacted with doctors, nurses, technicians,
and other health care providers. I'd like you to choose the time that stands
out in your mind as the worst experience you can remember. I'm going to
ask you to tell me what the situation was, and then I'll ask you to explain
to me what happened from beginning to end. What did you and others say,
do, feel, think? What things just happened? You can think of this as sort
of showing me and telling me about a series of snapshots. I'm going to
write them down so we can keep track of them, because we'll be coming back
to look at and talk in more detail about each snapshot later.
Jennifer said immediately that she knew exactly what she would be telling
At the time of the interview (which I audio-taped and later transcribed
verbatim), I reviewed the Sense-Making perspective and the focus of the
research with Jennifer again. Jennifer then proceeded with a narrative describing
the situation she had chosen in which, in the very early days of her illness,
she had experienced having been terrorized by the insensitive and hurtful
treatment of an intern while having blood drawn and preparing for her first
spinal tap. Although the incident had occurred three years earlier, her
memory of it was apparently vivid. She concluded her detailed, matter-of-fact
description of what was, for her, clearly a horrific situation, "And
he's still there, too, which makes me wonder. Because, every now and then,
I'll see him walking around, and I'm just like, 'You don't know me, but
[pause] you really hurt me.'"
After Jennifer explained what happened in the situation, I showed her
the Sense-Making metaphor and described how the exploration of her experience
We're going to go back and look at these steps, these snapshots,
in a very particular way. I'd like you to remember back to each step, each
moment in the situation, thinking again about what happened, what you and
others who were there said and did and felt and thought, and focus now
especially on what questions and confusions you had, what emotions and
feelings and physical reactions you had, what ideas or conclusions or understandings
you came to, what hurt and what helped.
Then Jennifer and I explored each step accordingly. After gathering all
the questions, confusions, emotions, feelings, physical reactions, ideas,
conclusions, and understandings at each step (and for Jennifer, as would
be expected given the significance of the experience for her, there were
many), we went back to triangulate each of these. For each question,
confusion, idea, conclusion, and so on, I asked Jennifer typical sense-making
questions, framed to help identify gaps, helps, and hurts, bridges discovered
or desired, the sense that was made at each step:
* What led you to have this (question, emotion, physical reaction,
conclusion, understanding, etc.)?
* Did you ask the question aloud or to yourself?
* Did this (question, conclusion, etc.) relate to your life before or after
this in any way? Did this (question, conclusion, etc.) have consequences
* Did it help you in any way?
* Did it hinder or hurt you in any way?
* How did it help (or hurt)?
* And how did that help (or hurt)?
* What leads you to say that?
* In an ideal world, how would you have been helped? What leads you to
Finally, I asked Jennifer to tell me what had led her to choose the situation
she had described as her worst health care experience, and then "de-briefed"
her with Sense-Making questions regarding the interview itself:
* What questions, feelings, conclusions do you have about being interviewed?
* Did the interview help you in any way?
* Did it hurt you in any way?
* What leads you to say that?
* Anything else you'd like to say?
This entire series of questions resulted in an interview that lasted
approximately four hours (spread over two evenings) -- not an unusual length
for a Micro-Moment Time-Line interview.
Jennifer's interview, and the experience of the interview for both of
us, was powerful on several levels. On a substantive level, her experience
and the sense she made of it spoke volumes in terms of the research questions
I was investigating. Jennifer had very strong feelings and opinions about
the experience she chose as her "worst" encounter with the health
care community, and she was quite articulate in expressing her views on
matters such as how health care providers should communicate with their
patients; the issue of control and the importance for patients of maintaining
(or seizing) some degree of control over their health care; and the importance
of patient advocates (especially, in this case, the respondent's mother).
She was outspoken and scathing in her opinions of health care providers
who fail to consult or even inform their patients about procedures or tests,
who make mistakes and don't seem to feel a need to apologize -- particularly
the intern who treated her in the situation she recounted; he "had
no clue," was "an idiot," and "extremely rude,"
"his attitude was just terrible," and he "did not show compassion
-- was just the opposite of what you would expect a doctor to be."
Linda: You said that at this point you were angry and upset, right?
What led you to that feeling of being angry and upset?
Jennifer: Just the fact of the way he treated me. I mean, he did
not treat me with respect. He just treated me like -- an object! I mean
. . . that's like what you tell your dog -- you tell your dog to roll over;
you don't tell a person! So, I mean, he just didn't treat me the way you
should be treated -- especially in a situation like that!
On the other hand, Jennifer expressed appreciation of health care providers
whom she found to be especially caring and openly communicative, such as
was the case with one particular nurse practitioner:
Linda: At that point, when your mom called the nurse and the nurse
said that she would do the spinal tap, did you have any questions or confusions?
Jennifer: Well, she explained to me what it was at the very beginning
because we asked her; we're like, "What is this?" And she explained
it nicely to me. And so after that, I didn't have any questions because
she had taken care of it; she had answered the question, "What is
Linda: Okay, so you did come to an understanding or conclusion?
Jennifer: Yeah, I finally figured out (laugh) what was happening!
Linda: Did you have any emotions or feelings at that point?
Jennifer: I was relieved that she was going to do it and not George
[the intern]. And I was scared because it was my first spinal tap and I
didn't know what it would feel like and stuff, so I was scared at that
point too. But, basically, I was mostly relieved to know that someone like
her -- because she, she was so nice, she was very nice, and so I was happy
that she would do it.
Jennifer also spoke eloquently about the importance for her life generally,
as well as for her subsequent health care experiences and her feelings about
them, of her discovery of her "patient's rights."
Once they told me my patients' rights, I really took advantage --
I took advantage of them, because I didn't want anyone to take advantage
of me. Because I was old enough to understand what they meant, and so,
I mean, if they didn't explain to me, I was just like, "No! (laugh)
You're not doing it; I'm sorry!"
Beyond the substantive results of the interview, there were outcomes
with methodological implications relating to the interview structure that
I found interesting and useful. Jennifer's responses to my questions ranged
from very brief and "surface" answers, to extended and reflective
narratives (such as the one at the beginning of this essay) that were quite
rich, telling, and powerful. Even the short responses were often packed
with revealing, intense emotions, opinions and conclusions. As Sense-Making
theory predicts, the repeated focusing on situation-moments, gaps, helps
and hurts, as well as the non-impositional structure of the interview questions,
seemed to help Jennifer to reflect on and tap into the ways in which she
had worked through and made sense of the experience she described.
Some sections of the interview seemed to me to be rather tedious and repetitive
and constrained, as Jennifer and I together painstakingly re-visited and
triangulated each of the steps she had identified, with all their many associated
questions, confusions, emotions, physical reactions, ideals, conclusions,
etc. At times, I worried that this repetitiveness might serve to mute my
respondent's reactions in a way that might not have occurred in a more free-wheeling,
dialogic format. I was also concerned that the interview process might render
her experience, one that was packed with emotion and significance, cool
and dry and clinical. In the end, though, this seemed emphatically not to
be the case. Jennifer never really seemed to mind the repetitiveness, and
I gained an increased appreciation of the usefulness of the deliberate,
thoughtful pace and painstaking question structure as new awareness and
"sense" seemed to surface with each revisiting of a moment, question,
feeling, conclusion, and so on. The insights for both of us in terms of
where she encountered gaps and discovered bridges were very rich. In addition,
the interview seemed to lead Jennifer to conscientize her experience in
a way that she had not done before, as she discussed in the "interviewee
de-briefing," for example:
Linda: While you've been interviewed, did you have any questions
about any of it in your mind. . . ?
Jennifer: No. It just got me to think about it. I mean, I really
never really thought about this situation other than, like, just what happened.
I mean, it really, it made you think about all the bad situations that's
happened in your life, about how much they affect you, and how much they
like just, what they do to you inside. I mean, with all the emotions and
everything that happened at that time -- you really don't realize it at
the time. . . . I mean, afterwards, if you think about it, I mean, everything
affects you so much!
The structure of the interview also disciplined me to truly listen carefully
and deliberately to my respondent. This was an aspect of the interview that
I especially focused and reflected on in my "interviewer debriefing."
I discovered the value of "neutral positive regard" more and more
as the interview progressed; it did seem to serve to ensure that the attention
remained focused on my respondent and to guard against my imposing my agenda,
my issues, and my opinions on her. However, I found it very difficult to
refrain from responding in a more "active listening" mode, the
kind that feels normal and natural to me. Not only did withholding active
responses and empathic feedback feel strange and uncomfortable (especially
because I had strong feelings about what she was telling me, and so found
myself so often suppressing my vehement reactions), but I also was concerned
that my respondent would feel hurt and dismissed by what might appear to
her as cold, unfeeling, uninterested responses on my part.
This concern loomed especially large for me because of the very personal,
sensitive, emotional content of the interview; because my respondent knew
that I had had a good deal of personal contact with the medical community
that would presumably make me a knowledgeable and sympathetic listener;
and because the respondent was a young woman, someone for whom cultural
norms governing interpersonal communication encounters might be particularly
likely to lead, on the one hand, to expectations of much more active, responsive
interaction or, on the other hand, to not being ever truly listened to,
especially by adults. In order to minimize my respondent's possible negative
feelings and responses in this regard, I was very clear and up-front about
the structure of the interview, explaining at different points that the
interview is unlike normal conversation, and reiterating the rationale behind
my "non-responsiveness." Jennifer, on the other hand, said this
did not put her off; on the contrary, she expressed appreciation at having
the opportunity to tell about her experience at such length and in such
The role and voice of the Other in research of lived experience is an
issue that all human science scholars must confront. Postmodern, postcolonial,
and feminist critiques have focused attention on the serious problems raised
by the muffling of the voice of the Other in research, of objectifying and
using Others for purposes that ultimately amount to domination. In the context
of health communication research, and especially in studies of groups such
as children and adolescents, who are even more systematically silenced and
disempowered by the health care system and with more potentially damaging
consequences than adult patients, this concern has particular salience.
Researchers must guard against replicating in their research the kinds of
harmful practices that serve to further disempower, control, and harm vulnerable
Still, scholarly research of human experience always involves speaking
for the Other, always demands interpretation; even when scholars imagine
that they can adopt an uncritical, purely scientific approach, there can
be no such thing as unbiased, objective description. And so, scholars must
take seriously the need to ponder the implications and responsibilities
entailed in presuming to represent and interpret the experiences of Others
and must critically examine their own subject positions in their research.
But we must move beyond comforting imaginings that self-reflexivity can
remove our ethical and scholarly responsibilities. The questions remain:
whose voice will be heard? Who is given the privilege of constructing
knowledge? Are we willing to share the construction of knowledge and understanding,
to acknowledge and empower our subjects as true collaborators? If so, how
can we achieve this goal?
It has been my argument in this paper that, in theory and practice, Dervin's
Sense-Making provides one answer. Sense-Making Methodology explicitly mandates
and enacts the privileging of the voice of the Other as theorist of
his or her own experience and the world. By providing a brief explanation
of Sense-Making's philosophical assumptions and methodology, and an example
of how these played out in research of health communication in the context
of the lived experience of adolescent chronic illness, I hope to have shown
the potential usefulness of Sense-Making for a wide range of human science
 The terms "Other," "Others," and "Othering,"
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