Commentary--Daily Experiences of Relationships and Illness: Reflecting on Our Focus.
"Be mindful of what you see. Always remember, your focus determines your reality." Admonitions to healthcare practitioners-in-training? No, this advice comes from Jedi master, Qui-Gon Jinn, to his young ward, Anakin Skywalker in the recent Star Wars movie (Brooks, 1999, p. 241). Now part of popular culture, this message has had a long tradition in our clinical work with families and health, and receives compelling support from David Young and David Rosenthal's exploration with couples who experience illness (1999).
Young and Rosenthal set out to illustrate John Rolland's "Family Systems Illness Model" (1994) through a unique and exciting methodology--the Experiential Sampling Method (ESM). This methodology is one of the few that could do justice to Rolland's elegant, powerful model for families' experience of illness and disability. This study affirms what theory-building pioneers, like Rolland, and "rank and file" systems-oriented healthcare practitioners have held dear for nearly 30 years. That is, when you look at the daily behaviors, thoughts, and emotions of families who experience illness, patterns emerge which suggest that illness is not simply a bio-organic phenomenon, but also influences and is influenced by many broader systems (e.g., individual, familial, interpersonal, societal, healthcare, cultural, spiritual). And, to best understand and treat illness, one must understand and involve these interconnected relationship systems.
Perhaps more than ever, these fundamental assumptions, which have been the focus of our work, are at risk. The current managed care climate encourages a paradigm shift back to a more reductionistic practice--from a focus on interconnectedness to a focus solely on disease. Increased demands for productivity shorten primary care appointment times. Fewer reimbursed psychotherapy sessions short-circuit effective treatment. Carve outs undermine the critical collaboration among health and mental health practitioners. In the midst of a busy clinical practice, we become vulnerable to convenience. Individuals are easier to convene than families. Addressing urgent health problems can delay inquiring about those problems in the context of people's lives. Rather than remembering that these multiple interconnected systems are the focus of the work, we are encouraged to treat an individual as the patient and to view family, friends, and others as social supports or stressors, to be called upon when needed. But the ESM data for Sarah and Don resist the dualistic framing of one patient with an illness and other family' members. In fact all household members, including Amy, who is pregnant, have significant health conditions. All three influence and are influenced by the others.
In their introduction, Young and Rosenthal suggest that physicians and family therapists will increasingly face the following issues: When is it necessary for physicians to include family members, and when is it necessary for family therapists to focus on illness? Through their research, the authors effectively address these issues by presenting a glimpse of the complexity and richness of four couples' lives, one aspect of which involves chronic illness. Their data support our field's paradigmatic notion that systems-oriented healthcare is a method, not a modality. A practitioner does not choose between "individual" or "family" modalities of care. Nor do we dissect relationships into medical or psychosocial issues, rigidly assigning them to appropriate professional disciplines. Family and community relationships must always be present in the mind of the physician or nurse practitioner, and physical health and illness must always be in the mind of the family therapist. By examining the breadth and depth of the daily lives of those who seek our help, we can discover the situation-specific guidelines for who should be in the clinic room, when, and what topic(s) should hold the focus, at what time.
In this era of evidence-based healthcare, Young and Rosenthal's work provides excellent scientific support for some of our most fundamental assumptions. This type of research should strengthen our resolve and be used to inform others who are perhaps unconvinced of the value of a systemic approach to healthcare (e.g., administrators, colleagues, trainees). The use of the ESM gives us a startling, fresh glimpse into the daily life of people experiencing illness and represents the type of scientific analysis urged by George Engel (1996). Believing that the biopsychosocial model provides a conceptual framework to scientifically understand the human domain, he said: "With respect to the patient's verbal report of an illness experience and the doctor's version thereof, both constitute claims to knowledge about what each believes he or she knows about what happened and about what the patient's experiences were like. These constitute the data on which the doctor depends for further study and decision making. Doing so scientifically requires the discipline to enhance the reliability of the very process of data acquisition itself (p. 428)." He goes on to say that " ... feeling `sick' and `falling ill' more often begin as private experiences not necessarily knowable to anyone else. Hence, the truly scientific physician not only must access that private world, but also must be reasonably assured that the information (data) can be relied on (p.429)."
Used in over a hundred studies, the ESM was developed by Mihalyi Csikszentmihalyi (1993) in the 1970s at the University of Chicago as a tool to gather peoples' thoughts, feelings, and behaviors in their daily lives. It offers a different view from other valuable measures frequently used in research and clinical assessment to understand families and illness. Clinical interviewing, history taking, and self-report questionnaires often represent a reflection on behaviors long after the fact. Observational tasks requiring families to engage in an activity (e.g., problem-solving) can reveal interactional dynamics but are not conducted in their natural context. Thus, we always cautiously consider in what ways they represent daily experience. The more immediate, real life, pulse-taking of the ESM adds a qualitatively different type of information.
Consider some of the previous research using ESM. In a study with patients who were diagnosed with panic disorder with or without agoraphobia, the ESM was used to see what their daily lives were like. Neither group differed significantly on the avoidance variables of remaining at home or being with a family member, thus challenging the current diagnostic conceptualizations that rely on patients' retrospective reports of the avoidance of public places (Dijkman-Caes, DeVries, Kraan, & Volovics, 1993). Mokros (1993) compared adolescents who were diagnosed with depression to a group that was not. During the clinical interview, all depressed subjects reported prominent and persistent sadness, irritability, and anhedonia. Their ESM data, however, demonstrated significantly less reporting of these experiences in their daily life. In addition, when compared to the ESM data of a nondiagnosed group, the majority of diagnosed adolescents reported similar or less sadness and irritability than the non-diagnosed group. In their study of adolescents and their families, Larson and Richards (1994) challenged the notion of circularity in families, based on their ESM data which suggested that a father's experiences at work, when coupled with society's traditional male role, allow him to have significantly greater influence on the emotional life of the family than other family members.
Turning to the current study, how can Young and Rosenthal's findings inform our work as healthcare practitioners? First, they remind us of a number of aspects of relationships and illness that we should regularly consider in our clinical encounters. Second, the ESM represents a method of discovery that can enhance our diagnostic and therapeutic process.
Let us look at those aspects of relationships and illness emerging from the ESM data that may be neglected in hurried clinical encounters:
At various points in their week, Don and Sarah reported very different interpretations of the same event, recorded at the same time, (e.g., the baking of cookies, the shopping trip, the experience of pain). Their inferences were divergent, and they seemed unaware of the variance (e.g., inferences about control, suffering). Such divergences may not surface in a later clinical encounter. The actual events and interpretations may be forgotten by one, or both. If remembered, the retelling of the experience is vulnerable to recall or there is an unwillingness to reveal or explore potentially conflictual perceptions. Nonetheless, the existence of divergence is common, and its relevance to family functioning, health, and illness needs to be considered.
The ESM data revealed that Sarah and Don derived significant strength from a variety of spiritually-related events--reading the Bible, attending church services, making cookies for a church bake sale. Discovering how their spirituality provides them pleasure seems a worthy focus but may slip their attention and that of their healthcare practitioners in routine care. Many positive, creative, and intimate daily experiences can be filtered out of clinical encounters because they seem unrelated to the problem at hand or because the suffering related to chronic illness and disability rivets the attention of both practitioner and families on discovering strategies for relief. However, we must remember that families experience real closeness, intimacy, and pleasure even in the face of pain, and hidden in these specific strengths and resources may be an avenue to physical, relational, and spiritual healing.
3) Extrafamilial Systems
Sarah and Don reported meaningful interactions with a variety of extrafamilial systems--support group, Promise Keepers, various healthcare systems, the church, Sunday school, food bank, and adult learning center. For another couple, the disability office was profoundly relevant. Brief clinical encounters can limit our area of attention, assessment, and treatment to intrafamilial life, thus nfissing positive and negative interactions with influential extrafamilial systems.
The ESM data for the four couples revealed various meanings that individuals and family members attributed to various experiences in their lives--the illness, control, choice responsibility, expectations of self and others, uncertainty and hope. As meaning can shape future experience, we must be able to understand its construction in the context of social relationships. Maragaret Mead noted that what distinguished humans from animals is that we can tell ourselves believable lies about our world. Reinforcing or shifting meaning can become one activity in which we and families may be able to alleviate suffering.
5) Attempted Solutions
Don worries about Sarah's struggles with pain and tries to take care of her. However, since they differ in their perception of her suffering (e.g., point of divergence on Wednesday morning), how will Sarah interpret his behavior of caretaking. Similarly, Don's perception of his wife's mistrust of his cognitive abilities may be a misperception of her desire to help. Protection can often be viewed as control. Out of desires to help, families (and healthcare practitioners) can develop patterns that backfire by adding additional suffering. What is worse, they may not realize the effect because they cannot capture the whole pattern. While cure of the chronic conditions may elude us, the accurate assessment of attempted solutions and the discovery of motivations behind each person's behaviors are in our reach and may actually alleviate some suffering.
6) Choosing the Focus of Care
One could view the focus of healthcare for Don and Sarah as their chronic pain, their troubles coping with their pain, their marital relationship, or their parenting/ step-parenting relationship. To deal with the complexity of clinical care, we may unconsciously search for a unifying focus for treatment that too quickly closes off other avenues. Biomedical training encourages algorithmic, problem-focused, categorical thinking that over-utilizes Occam's razor, which searches for the simplest, most parsimonious explanation for the events at hand. In a hurried practice, we may select one focus based not on a thoughtful, thorough process of understanding and discovery, but based on who tells us what information that best fits our lens at the time. Adapting an old saying, "If all you have is Occam's razor, everyone looks like they need a shave."
Now, let us explore how the method of discovery represented by the ESM can enhance our work. The research of Argyris and Schon (1974) suggests that all of us hold two types of theories, or sets of complexly related propositions, that inform our actions. Espoused theories are what we claim to follow, i.e. what we tell ourselves and others about why we do what we do. Theories-in-use are those that can be inferred from action. The two theories may be consistent or inconsistent. Theories-in-use may be unconscious or partly conscious but can be made explicit by reflecting on one's action.
When people tell us about their experience of illness, they reveal "espoused theories." When they experience their illness their actions reflect their "theories-in-use." Interactional patterns among family members consist of people responding to each other's actions. If their "espoused theories" are inconsistent with their "theories in use," divergences of interpretation, conflicts in meaning, and unsuccessful attempted solutions can develop. The ESM provides a chance for individuals, and then ultimately anyone with whom they share their interior reflections, to discover what assumptions may actually be operating in interactions.
Argyris and Schon also describe how we may automatically and without awareness censor important ideas and feelings if we feel they may upset other individuals and lead to defensiveness.
Exploring this hidden process of censoring can reveal what people believe will be threatening to themselves and others. People frequently evolve their theories to help control situations and reduce perceived negative outcomes. Predicaments can emerge when theories-in-use are unexamined, and foster a climate of untested assertions about others' behaviors, avoidance of threatening issues, and unilateral decision-making.
The ESM can provide a mechanism to better understand relationships and improve clinical decision-making. In fact, some are experimenting with developing treatment plans specifically related to ESM data that increases identified patterns of positive interaction and decreases patterns of negative interactions (Massimini & Carli, 1988). Its power comes first from a broad look at activities involving the illness, but also includes seemingly unrelated events like baking cookies, shopping with one's mother/mother-in-law, and accompanying a daughter to class. Second, it provides an opportunity for people to reflect on their action and make their theories-in-use more conscious and thus more comparable to their espoused theories. Third, it can reveal how the censoring process occurs and why. As we saw, this process is not limited to one individual, but can involve and identify other important people in the system (e.g., Sarah's mother, Don's daughter, Amy).
Helping people stop and reflect upon what they are doing, while they do it, can help them deal with situations of uncertainty, instability, uniqueness, and value conflict all familiar to those who experience illness (Schon, 1983). Reflecting-on-action, with practice, can become reflecting-in-action, allowing for quick decisions and behavioral changes.
As we know, the use of the ESM would bring its own cautions to generalizability. For example, what issues you ask people to reflect on will orient the response, and recording a response that will be made available to others will shape what is written. Any method of assessment will be shaped by assumptions underlying it and will have an effect on the context assessed.
If we choose not to saddle our families with pagers and prompts, at least we should consider how the essential aspects of the ESM can enhance our work with them. The following aspects of this methodology seem key:
1) Encourage a here-and-now attention to the full breadth of daily activities.
2) Ensure a compassionate, self-examination of one's theories and how they inform actions.
3) Develop a safe context for sharing these thoughts, feelings, and decisions with each other.
4) Keep a keen eye out for patterns of individual and interactional strength.
5) Engage in an experimental enterprise, not a unilateral "doctor fixes the problem," but a bringing to the table of everyone's expertise, observations, and hypotheses.
This therapeutic process echoes the work done in mindfulness and healthcare. Jon Kabat-Zim (1990) and colleagues (Santorelli, 1999) have demonstrated that bringing a fullness of attention to whatever is occurring in the here and now fosters the healing process. The practice of learning to stop, pay attention, and be present, coupled with a non-judgmental, deep look into whatever is before us can improve coping, reduce fear, and restore balance in perception, focus, and reality.
When we implement this practice of mindfulness into the context of relationships, we can discover patterns of interaction that lend themselves to healing and those that contribute to suffering. Then, taking into account relationship issues such as control, choice, power, and trust, we can examine what are the risks of disclosing, or changing these patterns.
For this process to have the maximum effect, we need to be as self-reflective and aware of our role in selecting the focus of the care. As Engel (1996, p. 429) further described the scientific data that becomes the focus of the clinical encounter: "Critical is recognition that the patient is both an initiator and a collaborator in the process, not merely an object of study. The physician, in turn, is a participant observer who, in the process of attending to the patient's reporting of inner-world data, taps into his or her own personal inner-viewing system for comparison and clarification."
Our personal theories, both espoused and in-use, require the same examination and vigilance we ask of families. Imagine if, for a week, we were prompted randomly throughout the day to stop, reflect, and record how we were thinking, feeling, and behaving--at work, at home, with family, and with others. Could we also benefit from clarity on why we do what we do? What if we asked our own family members and our colleagues to join us in this exercise? We might discover some surprising insights, if done honestly, about ourselves, our relationships, and our work.
Reflecting on the experience of pain and suffering, Thich Nhat Hanh (1975, pp 48-49) stressed the importance of mindfulness and focus, "People normally cut reality into compartments, and so are unable to see the interdependence of all phenomena. To see one in all and all in one is to break through the great barrier which narrows one's perception of reality as unchanging entities which exist on their own ... Meditation on interdependence is to be practiced constantly, not only while sitting, but as an integral part of our involvement in all ordinary tasks." As we face the pressures of managed care, we should be heartened by the work of David Young and David Rosenthal. They validate much of what we believe about the interdependence of relationships and illness and remind us that to facilitate healing our focus must remain grounded in the ordinary experiences of the families who seek our help, and in our own.
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Massimini, F. & Carli, C. (1988). The systematic assessment of flow in daily experience. In M. Csikszentmihalyi & I.S. Csikszentmihalyi (eds.), Optimal experience: Psychological studies of flow in consciousness, New York: Cambridge University Press.
Kabat-Zinn, J. (1990). Full catastrophe living: Using the wisdom of your body and mind to face stress, pain, and illness. New York: Delacorte Press.
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George William Saba, Ph.D., Department of Family and Community Medicine, University of California, San Francisco
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|Author:||SABA, GEORGE WILLIAM|
|Publication:||Families, Systems & Health|
|Date:||Sep 22, 1999|
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