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The Electronic Journal of Communication / La Revue Electronique de Communication

Volume 9 Numbers 2, 3, 4 1999

Lived Experience in the Context of Adolescent Illness


Linda Wheeler Cardillo
Ohio State University
Columbus, Ohio USA

    Abstract. This essay explores the possibilities offered by Sense-Making Methodology 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 life.



    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 illnesses)

    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 issues involved.

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, 1989).

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." [1] 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 and illness.

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.

Sense-Making Methodology

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. 53-54)

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 intellectually rigorous.

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 me about.

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 would proceed:

    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 or impacts?
* 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 say that?

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." For example:

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 it?"

    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 detail.


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 groups.

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 research endeavors.


[1] The terms "Other," "Others," and "Othering," deliberately capitalized, have become standard terms in critical and cultural literatures that reflexively and critically call attention to the often oppressive political and ethical consequences of practices and processes by which "we" in positions of authority and privilege separate, differentiate and distance "Others" from ourselves. See Fine, 1994; Viswesaran, 1994; and West, 1993.


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