Dr. Mara Buchbinder’s most recent book, All in Your Head: Making Sense of Pediatric Pain, offers an exciting perspective on pediatric pain by focusing on the intricate dynamics of a small clinic in California she refers to as the “West Clinic”. By following the lives of several adolescent patients, families, and clinicians, she identifies numerous variables which contribute to making sense of pediatric pain. The book challenges its audience to recognize the social expectation which culture has linked to definitions of pain. This interview on her newest academic feat was conducted by a team of undergraduate Medical Anthropology minors.
“Because the mind is the province of imagination, ‘”all in your head'” may also suggest that the pain is made up, […] the invention of a self-defeating mind, or, worse the fabrication of a malingerer.”
Sources of Inspiration
When did you decide you wanted to go into medical anthropology?
M.B.: I had this really fantastic opportunity to do an interdisciplinary undergraduate thesis project at Dartmouth College. I developed this idea based on my summer research at The Children’s Hospital, Boston to make visual illness narratives of adolescents with type 1 diabetes. For my senior project, I produced a video component about what it was like [for these adolescents] to live with type 1 diabetes. I loved doing that and it got me very excited about going to graduate school and doing research. That’s what actually got me into medical anthropology.
What inspired you to write about this topic? Why did you choose to focus on pediatric pain?
M.B: I have always been interested in children’s health issues and how families manage children’s chronic health problems. What I found really compelling me about medical anthropology was the focus on people’s narratives about illness. That is why I wanted to look at pediatric issues. In terms of the focus for my dissertation research, I happened to find out about this clinic and it seemed like a very interesting research opportunity because it was unique in the way that it was set up and the the kinds of pain that it dealt with.
“What really compelled me about medical anthropology was the focus on people’s narratives about illness.”
What were some of the challenges you faced in the writing and research behind All in Your Head?
M.B.: One thing that was a little challenging was that I didn’t leave home to do this project. [In anthropology,] there’s an expectation that you will go somewhere else and experience a foreign culture. Initially, I had a hard time getting my research off the ground and thinking “Am I in the field now?” and “What is the field? What defines the limits of the field?”. I also had methodological challenges and had to adjust the research design. It was sometimes difficult to recruit families to participate, but I incorporated more of what I saw as low-hanging fruit. Most families let me observe their clinical appointments with physicians, so I did a lot of that.
With respect to writing, I think it was challenging that so much of what I saw in the clinic was very particular. The patient population was very privileged and didn’t really reflect the socio-demographics of the surrounding area. I struggled because I was talking about a type of health care that a lot of people didn’t have access to. I thought about how to set up the story so that it would reflect on larger themes, even though it’s not representative of the American health care system. There was a patient that I had recruited for my study but didn’t end up going to the clinic because her state insurance wasn’t accepted. I decided to write a chapter about her experience because it showed what happened when people didn’t have access to the clinic.
“I’d say a really high percentage of them could get better… if their parents would let them.”
-Nina Herrera, clinical coordinator, West Clinic
In Chapter 4, “Treating the Family”, you focus on how the West Clinic team assumptions of normative family roles relate to explanatory models behind treatment decisions. Can you expand on how other normative assumptions contributed to treatment decisions?
M.B.: I think that a lot of the decisions about restoring functioning were motivated by ideas about what defines success in adolescence, and so a lot of the decisions were oriented toward, getting kids into college. There was a lot of talk about getting [them] into college and getting them back into their high-achieving tracks. Of course, sometimes I think the clinicians helped families and patients get off that track, and that was also part of what they did. But I think sometimes they were implicitly motivated by middle class values about education and achievement and success.
In Chapter 5, you begin with a quote by George Beard about American nervousness “Without civilization there can be no nervousness…”. In what ways does this quote relate to the West Clinic patients’ experiences with navigating their roles in civilization as both patients and humans?
M.B.: I was very drawn to historical work on diseases that affect certain socioeconomic groups. Much of the discussion in the clinic meetings was about the culture of stress facing today’s adolescents. I think it’s true that adolescents today are under a lot of stress, but there’s a particular class privilege that marks the kind of stress that these kids are experiencing that is quite different from that of working class teenager in certain parts of the country. I got really fascinated with Beard’s work on nervousness because it is kind of a byproduct of modernization and civilization growth. There was something similar going on with the way people talk about what is going on with the West Clinic patients, which I think is very interesting.
“I think there’s been growing interest in thinking about complementary and alternative treatments.”
What do you think are next steps in the field of pediatric pain research?
M.B.: I think there’s been growing interest in thinking about complementary and alternative and integrative treatments, and there are big funding and structural constraints with incorporating those into pediatric pain treatment. That is one place where people should probably be devoting more attention. Generally speaking, the financial issues are big because pediatric pain is really underfunded. And actually, pain in general is underfunded by the NIH. That is a challenge for future research. I would like to see more interest in the productive side of language and the productive possibilities of using particular types of metaphors to explain things to pediatric patients. I think that [research] could be very generative and low cost. Low cost, high yield I would say.
Thank you Dr. Buchbinder for speaking to us about your new book.
Favorite book: Rayna Rapp’s Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America
Current research: Cultural impact of Vermont’s physician aid-in-dying law
Advice for students entering the field of medical anthropology: To think collaboratively and interdisciplinary – how insights from medical anthropology can enhance approaches to health problems from other disciplines such as public health and clinical medicine.
For information about Dr. Buchbinder’s previous book, Saving Babies? The Consequences of Newborn Genetic Screening, click here.