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Illness in Context and Families as Teachers: A Year-Long Project for Medical Students

Gaver, Anat MD; Borkan, Jeffrey M. MD, PhD; Weingarten, Michael A. MA, BM, BCh

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Abstract

Training in issues of family, context, relationship, and continuity of care is usually confined to family medicine residencies1 and to general practitioners’ continuing medical education courses,2 while the chances for doctors in other specialties to be exposed to these matters are poor.

This deficit in many incoming residents’ education underscores the crucial role of the medical school in helping all students gain a basic acquaintance with family and other contextual issues in medicine. Understanding the family and the social context is relevant to doctors is all fields of medicine, not only to family doctors. In line with this message, we describe below our experience in establishing a generic program for students at the very beginning of medical school, aimed at exposing all medical students to the importance of patient context and of student–family interactions. The program is based on the narrative approach to medicine,3 which is based on the premise that attentiveness to the family context4; to the circular interactions among patients, their families, and doctors; and to patients’ stories of their illnesses (i.e., “illness stories”) may help doctors and patients to co-create a new, and hopefully better, story.5

The Family Project

Academic context

In the Tel Aviv University Medical School we address the need for medical students to acquire appropriate knowledge, skills and attitudes regarding treatment of patients in the context of their families. This is done in a project for second year medical students entitled Disease and Illness in Context—a Long-Term Follow Up of a Family. This project, known by both students and faculty as the Family Project, began in the academic year 2000–01. It is part of a Medicine, Patient, and Society (MPS) program6 that spans all six years of medical school and attempts to integrate the behavioral sciences, humanities, life sciences, and clinical medicine “seamlessly,” and whose overall goal is to help medical students become humanistic physicians.

Program description

During the course of their second (out of six) year in medical school, each student meets with a volunteer family, one of whose members suffers from a chronic disease or other impairment. The project is directed and run by one faculty member (AG). The project has managed to recruit around a hundred volunteer families each year, one for each student, mostly through patient-support groups or through community general practitioners and hospitals. A major difficulty associated with the course organization is the process of finding, approaching, and establishing commitment for the project among potential volunteering organizations and families. This time- and effort-consuming process is the key to the success of the project.

The students meet the families five times during the academic year. During the first meeting, which takes place at the home of the family, the student listens to the family's various life and illness stories as they continue to unfold during the conversation. The second meeting is devoted to drawing the family tree, which is used as a tool for eliciting more of the family’s narrative. The student can now see the patient within a broader familial, cultural and social context, and through the prism of the family's illness stories.7,8

The next two meetings are dedicated to the interactions between the family and the medical and surrounding social systems, as the student accompanies the patient to a visit to his or her doctor, workplace, school etc. The fifth and last meeting takes place at the family's home again, and is devoted to closure of the process.

At the end of the year the students are required to submit an essay where the biomedical aspects are described, the patient's and family's stories recounted, and student's own involvement reflected upon. Composing the essays serves both as a component of learning and as a tool for faculty to evaluate the students. As a year-long process, the Family Project encourages awareness of evolution and changes in the disease, and of developments in the narratives as told by both the family and the student over time.

To provide both orientation and goals for the program, we prepared written semistructured instructions for the students for each encounter. The students are given supervision in small groups that are part of the larger MPS framework. Two faculty members, one doctor and one behavioral science professional, lead each small group of twelve students, which meets every two weeks. Although an extensive discussion of the function of the small groups is beyond the scope of this article, these groups, perceived as valuable in other settings as well,9 provide the students with opportunities for emotional support, for self-reflection, and for construction of knowledge through conversations with the facilitators and with their own peers. Being a reflective student is perceived as a precursor for being a future reflective practitioner, since being reflective is critical to the quality of medical work, for job satisfaction, and for the mental health of doctors.10 The long-term and personal interactions within the group run parallel to the developing process between the students and their assigned families.

To prevent students from looking at families merely as objects of inspection, investigation, and assessment, we adopted a stance of seeing the patients and their families as teachers.11,12 After being specifically instructed to do so, the patients and their families teach the students about their diseases, about which many of them have become quite expert. They share with students the narratives of their coping with their diseases, the narratives of their interactions with the medical and surrounding social systems, and their expectations from their doctors. Feedback from participating families is very positive. Many families wrote positive and thankful comments; some families even took the role of teachers to the extent of submitting report-like letters about “their” students at the end of the year. One of the most rewarding outcomes, which speaks for itself, is that about 20% of the participating families each year have agreed to continue with the project and with a new second-year student for another year.

What Have the Students Learned?

Analyzing the essays

To appraise the extent to which students had obtained the required knowledge, skills and attitudes, we analyzed the remarks and reflections regarding the project, its goals, and its achievements that the students included in their written essays and submitted at the end of the academic year 2000–01. According to the instructions, the essays should reflect integration of several kinds of stories: family and illness stories, interactions stories, and students’ own stories—all through the prism of the professional literature. Each student is required to include several topics in his or her essay, such as the student's personal learning process and the student's interactions with his or her family. Students are asked to cover the following questions: How have family members seen the interaction with you through the year? How have you seen it? Have the meetings between you and the family made any change, and to whom? What have you learned from the family? What have you learned from the interaction? What have you learned about yourself?

We used forty randomly selected essays for detailed analysis, and extracted all the statements related to the students’ personal learning experiences and to their interactions with the family from each of the essays. We later looked for major themes that were threaded frequently among the students’ remarks and comments.

What we found

The following seven major themes were identified in the students’ essays.

Becoming “family sensitive.”

Many of the students mentioned their increasing ability to see the disease in the context of the patient, the family and society, as can be seen in the following extracts from some of the essays:

I have learned that there are complex interactions between the social and medical systems and the family, and that family context influences the way one copes with disability.

There is a person behind a disease and a family behind a patient, and the family is not in a vacuum.

Building and improving communication skills.

Most of the students, some of whom were reluctant to do the project at the beginning of the year, ended up enjoying the rewarding relationships with the families and the “hands-on” features of the project, and appreciated the opportunity for active learning through experiencing and involvement rather then from passive observation. Students wrote:

I realized that I know how to listen to people's problems, and I have learned how to do it better.

As time passed, I understood what I am allowed to ask and what not to ask.

At the first meeting, I addressed only the parents (of a disabled child)… later on I realized that I had started interacting with the child as well.

Questioning intrusiveness.

While many students mentioned a preliminary perception of the project as intrusive, most of them experienced an evolution of this concern through the year. As the relationship with the families developed, the students did not see themselves any more as outside intruders but as part of the system, and thus legitimately involved and genuinely interested in the family.

At first I opposed the project, but my opinion has changed...I realized that the doubts I had about the project at the beginning of the year were in fact due to my own difficulties and fear of intrusiveness. The family did not feel the same way.

I was skeptical and full of fears...I couldn't see myself intruding into a strange family...[later on] my fears vanished.

A few students, however, criticized the project for its intrusiveness even at the end of the year:

I felt that I invaded their privacy, especially the privacy of the teenaged son.

I opposed the project from the beginning because I felt it was intrusive. The relationship with my family was different, but I heard about problems in other cases.

Adopting a nonpatronizing and a nonjudgmental attitude.

Most of the students felt comfortable with the concept of “patients and families as teachers.” They realized that they could learn from the families instead of investigating them. Although this concept might seem less revolutionary for beginning students than for practicing physicians, the acceptance of this concept is a refreshing contrast to the common image of the arrogant medical student. Students wrote:

I have learned from the family much more than they have learned from me, and I realized that a doctor can get from his patients much more than just the medical history.

I have learned that one is not to judge...that one has to look and listen most of the time.

I was lucky to have an older and mature patient, who taught me so much, not only about the disease...he helped me to establish an opinion about the doctor's role in the doctor–patient relationship.

Developing reflective skills and personal growth.

Many students were able to reflect on the learning process itself, and pointed out that they made progress during the process. A few examples:

The patient's great distress evoked my empathy. I wished I could help her. These feelings were of an intensity that was not familiar to me before.

The borders of professional and personal life are very fragile.... Thanks to the family, I could go back and reflect upon my own family.

My mother has diabetes too...the meetings with the assigned family enabled me to take one step back and look at my own family from an observer position.

Being an only child, it was important to me to understand the dynamics of a family with several siblings.

The family demanded more than I was able and wanted to give at that stage.

Creating a future professional model.

Some students mentioned that, thanks to the project, they have modified their model of the physician they would like to become.

I am sure that this experience will accompany me in my future professional life.

The unpleasant experience of the family with the medical system made me think about what I should do in order to avoid the same mistakes.

I have now formed some assumptions about how a doctor should treat patients and their families.

Experiencing and appreciating continuity of care.

The longitudinal program enabled our students to appreciate the merits of a long-term relationship, which we see as a precursor to understanding the importance of continuity of care.

I was happy to find out that with each meeting we became closer, that each time I discovered something new and gained a different perspective.

I felt more and more accepted into the family...the third meeting was the most successful meeting so far.

Discussion

Comments on the evaluation process

Barriers have been identified in teaching behavioral and social sciences to medical students.13 While some of the difficulties originate at the level of faculty and institution (e.g., vaguely defined teaching priorities and lack of qualified teachers), others derive from students’ negative attitudes. However, the Family Project was almost always favorably perceived by the students, who saw it as relevant both to present learning and to future clinical practice. According to the students’ feedback, the personal relationships with the families’ introducing them to the idea of family contexts, the chance to use and strengthen their communication skills, and the opportunity to reflect on the learning process all contributed to that positive attitude. Also, the role of the patients and families as teachers was acceptable to students and helped them to maintain a nonpatronizing attitude.

One limitation of our report is that our conclusions are based on remarks and reflections that were included in the written essays used for students’ assessment, rather than on a formal course evaluation. The fact that the same piece of writing is being used to assess the students and as a data source for a study of attitudes is problematic indeed, and raises a concern that the students wrote what they thought we wanted to read, and that their remarks reflect conformism rather that genuine learning. Keeping this in mind, at least we can conclude that the students understood what we wanted them to write, and that is a lot better than nothing. Understanding the appropriate attitudes regarding treatment of patients in the context of their families is the first stage of acquiring these attitudes.

Having said that, we still feel that the remarks do carry a scent of authenticity, as they had been composed by the students in a mode of reflectivity, stimulated by the process of writing their essays, and while connected to the subjective learning experience and to the context of their relationship with the family. A formal anonymous feedback might indeed show different results, but we argue that such results, though informative and valuable in many ways, might not contain the kinds of personal impressions and insights that were available from the students’ essays for the evaluation reported here.

Strengths of the Family Project

Longitudinal ambulatory care rotations are common in medical schools in North America.14 Perceived as valuable by both institutions15 and students,16 though evidence regarding their superiority to block rotations is sparse,17 these programs are mostly aimed at teaching clinical medicine in an ambulatory care setting. Our program is special in several aspects:

First, it emphasizes continuity and long-term relationships not only in a clinical context but also in the other multiple contexts of a family’s life.

Second, it requires an active role of the student. The student's role is not to passively observe the doctor–patient relationship but to be an active participant–observer, who interacts with the family members and establishes a long-term relationship with them, while at the same time also observing the process and reflecting on it.

Third, unlike other teaching programs, whose focus is either on a long-term student–teacher relationship or on a long-term student–patient experience,18 we offer both.

Fourth, while other programs were developed for students in more advanced stages of medical school, ours is for beginner students in their second out of six years in medical school. We believe that enabling students to recognize and appreciate the importance of the context of disease, when done at an early stage of their medical education, will add meaning to their study of biomedicine. Also, when taught early, the behavioral dimension of medicine may hopefully be perceived as an important and legitimate component of medicine and not as a mere appendix to biomedicine. In concordance with this message, if a similar course were to be considered for a typical four-year American medical school, we would suggest the first year as an equivalent timing.

There is evidence that sensitivity to relationships, and the recognition by doctors of the importance of family and social context, contribute to positive health outcomes.19 It is our belief that this is true for all doctors, not only family doctors, and therefore should be part of general medical school education. Although we are family doctors, the Family Project is not intended to promote family medicine training in particular. Because narrative-based medicine can be practiced not only in family medicine5 but in any field of medicine,20 we hope that the Family Project graduates will retain their interest in patients’ stories and contexts regardless of the specialties they choose later on.

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