Interviews

Interviewing is a means of engaging an individual in dialogue to reflect upon and share his or her life experience. For health humanities, this method accesses the lived reality of patients and healthcare providers. Asking people to share their personal narratives can allow for emic—from the subject’s perspective—and etic—from the researcher’s point of view—interpretation. Health humanities interviews consist of six steps: define the research question, design the interview, apply for Institutional Review Board approval, conduct the interviews, analyze the data, and distribute the findings. This chapter examines best practices for conducting interview studies including format (structured, unstructured, semi-structured), question type (closed- or open-ended), sampling (convenience, snowball), and notetaking. The author uses a study on collecting death histories to demonstrate this process and how to apply narrative, thematic, and frequency analyses.

Ethnography

Ethnography is a powerful qualitative research method used to understand research informants’ perspectives on a health-related topic. Developed and pioneered by anthropologists, this method has become an important tool across disciplines and industries. This chapter explains the utility of the method for use in the health humanities and offers step-by-step instructions to teach the reader to conduct ethnographic research. Concrete examples from long-term research projects demonstrate not only how this method is used to answer “why” and “how” questions, but also how this type of research pairs with other research methods. Many tools are offered to the reader to assist in the development of ethnographic research skills including resources, references, and an exercise to teach the method.

American Studies

American Studies is an interdisciplinary field that has ties to literary studies and other disciplines, notably history, anthropology, sociology, and religious studies. Health humanists use American Studies methods to explore how representations of illness, health, and healthcare construct and are constructed by notions of nation, national character, and citizenship, not only as they relate to the US nation-state, but also to other conceptions of America. For this reason, health humanist projects guided by American Studies can identify the processes through which embodied selves exert or are subject to power. While American Studies methods encourage intervention in matters of social injustice, they also may reduce the individual, subjective experience of embodiment to a means to an interpretive end.

Comics

Comics can be used to research healthcare practice and experiences with illness and caregiving. Comics can also be sources of data themselves: professional healthcare providers engaged in research use comics to understand their practice in order to improve it and to promote humanism in healthcare. Patients and caregivers create comics to share their personal accounts of illness and caregiving. Comics can also be a means for collecting data: asking research participants to draw comics of themselves and their experiences can offer data otherwise difficult to elicit. Comics are constructed narratives that can be analyzed for visual, textual, and narrative elements; gutters; style; influences; external references; and use of humor, as well as for what is present in a panel and what is absent. Using comics as a research tool allows access to autobiographical and emotional aspects of healthcare, enabling health humanities researchers to reconceptualize both practice and illness.

Introduction

This introduction offers a definition of the growing field of health humanities. Emerging from medical humanities, whose primary focus has been on the physician and patient relationship, health humanities is a larger enterprise; it studies health, which is broader than just medicine, within its sociocultural context, which reflects the historical biases of cultures. Practitioners come to health humanities with diverse disciplinary training, and thus research methods vary broadly within the field. What unites these methods, and the field, is a focus on applied research driven by shared values, particularly a commitment to social justice. Health humanities is a transdisciplinary field, wherein much research aims to engage external stakeholders in the research itself, and to translate the results of that research back to those stakeholders in beneficial ways. The chapters of this volume represent only some of the diverse methods of research within health humanities, but will allow the reader to sample and practice several different modes of health humanities inquiry.

Fiction Writing

Fiction writing is a method that uses imagination and narrative to collect information about potential sources of bias—assumptions, stereotypes, misconceptions—that one group might have toward another or toward a specific kind of behavior. This fiction writing method involves leading participants through a series of prompts designed to encourage deep engagement with a narrative and with perspective taking. The steps involved are (1) identifying an area/topic/relationship, (2) anchoring the situation/topic to a character, (3) rounding out the character, (4) constructing a scene featuring the character, (5) analyzing the results, and (6) disseminating the findings. Researchers can combine fiction writing with assessments of empathy for an imagined character or attitudes about attribution for health behaviors. Research themes include how individual characteristics are emphasized in explaining health behaviors. Understanding the relationships among narrative, empathy, and attribution has implications for how services are designed and delivered, as well as for health policies.

Community Dialogues

Community dialogues provide a method of determining viewpoints and values for representative populations and also offer a means for educating and empowering participants on the topic being discussed. Dialogue participants take the information that is gleaned from the research and use it to make changes that will affect their families and broader community members. In the conduct of dialogues, research becomes a two-way street: researchers and participants both gather information, with the former collecting data about values and beliefs about a topic and the latter acquiring knowledge regarding a topic to deliver to their communities and serve as a catalyst for further conversation and change. The technique is particularly well-suited for complex topics where some education is needed about the different perspectives being researched. The researchers go beyond the normal data-gathering and analyzing functions to assist participants in identifying potential avenues for implementing policy changes.

Health and Social Justice Studies

Health and social justice studies (HSJS) builds on close reading and archival research methods to examine the ways in which diverse people experience health and healthcare at the often highly charged intersection of culture, law, economics, and biomedical systems. This scholarly method focuses on socioeconomic disparities among groups in a society and examines how ordinary people experience health and care in everyday social environments. Health and social justice studies research with a history focus reconstructs particular health and healthcare disparities at particular times and examines reform movements aimed at reducing these disparities, with the objective of suggesting ways to reduce disparities in the future. By privileging marginalized people, this research method advances the goals of person-centered care and population health equity in health humanities.

Reading Film

Films reflect and influence values, practices, and the cultural contexts in which they are produced and consumed. In terms of health humanities, reading film allows us to investigate how we “see” certain types of bodies, illnesses, and medical practices, revealing tensions, contradictions, and assumptions about health that have become cultural myths—naturalized narratives or beliefs that illustrate a common cultural ideal. Reading film as a research method for health humanities requires attention to narrative and filmic elements at both the level of individual scenes and the film as a whole. Reading film provides a unique way to understand the broader social impacts of medicine and develops a visual literacy to interrogate how health and medicine shape and are shaped by a given cultural moment.

Critical Approaches to Life-Writing

This chapter describes some of the tools and methods for critically reading life-writing texts, including memoirs and autobiography, with an emphasis on life-writing by health professionals and/or in the context of healthcare. Life-writing texts allow research into the internal and lived experiences of those who provide healthcare, such as physicians and nurses, and those who receive healthcare. Texts by life-writing subjects from different historical periods, geographic locations, genders, diagnoses, and stages and contexts of training can offer shifting perspectives on a range of topics from the development of health professional identity, what it means to be sick, and about how these experiences relate to the practices and institutions of healthcare. Steps in the research process and methods for analyzing life-writing texts are outlined, along with relevant resources. The field of life-writing offers many possibilities for health humanities researchers and can be enriched by bringing interdisciplinary theories to the analysis of life-writing texts.