Mara Buchbinder

Patients-in-Waiting Living between Sickness and Health in the Genomics Era

What are the social consequences of the recent expansion of newborn screening in the United States? The adoption of new screening technologies has generated diagnostic uncertainty about the nature of screening targets, making it unclear not only whether a newborn will develop a disease but also what the condition actually is. Based on observations in a genetics clinic and in-depth interviews with parents and geneticists, we examine how parents and clinical staff work out the social significance of uncertain newborn screening results. We find that some newborns will experience a specific trajectory of prolonged liminality between a state of normal health and pathology. Based on a review of related literatures, we suggest “patients-in-waiting” as an umbrella concept for those under medical surveillance between health and disease.

ethnographic approaches to child care research a review of the literature

This article presents the findings from a review of ethnographic approaches to child care research. Ethnographic research has enhanced researcher and practitioner understandings of the child care environment by providing entry into the child care center as an important site not only of development and education, but also of social reproduction and enculturation. The extant research is summarized by identifying four dominant perspectives for viewing non-parental child care: (1) caregiver-centered, (2) mother-centered, (3) child-centered, and (4) societal. This article argues that studying the perspectives of caregivers, mothers, and children in isolation limits understandings of child care experience, since experience is shaped by continuous interactions among participants. We suggest that a more holistic ethnographic approach could enhance child care practice by increasing understanding of the relationships among caregivers, mothers, and children, and how these relationships influence children’s social and emotional development. The article concludes with a proposed agenda for ethnographic research on child care.

Newborn screening and maternal diagnosis: rethinking family benefit.

In a significant departure from established criteria for population screening, a 2006 report by the American College of Medical Geneticists (ACMG) argued that newborn screening may be justified by family and societal benefits even if the screened infant does not stand to benefit. The ACMG report has since been the backdrop for considerable debate about the presumptive benefits of newborn screening. Understandings of family benefits have focused on how information provided by newborn screening may enhance reproductive decision-making, reduce the diagnostic odyssey, and alleviate the burden of raising a child with special health care needs. This paper identifies and describes an additional consequence of newborn screening for families. Specifically, we draw upon audio-recordings and clinical observations from a three-year ethnographic study of expanded newborn screening in California (November 2007-July 2010) to examine the potential for newborn screening to diagnose mothers with genetic disorders. This consequence of expanded newborn screening suggests the possibility of a different type of family spillover from that anticipated by the ACMG report. However, whether this knowledge benefits families depends on how the significance of genetic information is established in the clinic and the familys ability to act on this information. We show that the newborn screening health care infrastructure is not designed to provide treatment for adult patients, so the identification of maternal disease does not necessarily prove beneficial for families.

Newborn Screening for Metabolic Disorders: Parental Perceptions of the Initial Communication of Results

Positive newborn screening (NBS) results cause significant parental distress, but little is known about how parents find out about children’s screening results and what they are told. This qualitative, exploratory study reports on parents’ perceptions of the initial communication of NBS results. Participants included the parents of 75 infants referred to a metabolic clinic in California over a 3-year period (2007-2010). Parents provided information about the initial communication of NBS results during audiotaped clinical encounters and open-ended interviews. Transcripts were analyzed inductively using thematic coding. Responses fell into 3 primary themes: sources of news delivery, providing information, and mitigation strategies. The findings suggest that health care providers have access to a range of communicative resources to buffer the impact of positive screening results that may be mobilized in future interventions. Recommendations for improving the communication process and future research directions are discussed.

Giving an account of one's pain in the anthropological interview.

In this paper, I analyze the illness stories narrated by a mother and her 13-year-old son as part of an ethnographic study of child chronic pain sufferers and their families. In examining some of the moral, relational and communicative challenges of giving an account of one’s pain, I focus on what is left out of some accounts of illness and suffering and explore some possible reasons for these elisions. Drawing on recent work by Judith Butler (Giving an Account of Oneself, 2005), I investigate how the pragmatic context of interviews can introduce a form of symbolic violence to narrative accounts. Specifically, I use the term “genre of complaint” to highlight how anthropological research interviews in biomedical settings invoke certain typified forms of suffering that call for the rectification of perceived injustices. Interview narratives articulated in the genre of complaint privilege specific types of pain and suffering and cast others into the background. Giving an account of one’s pain is thus a strategic and selective process, creating interruptions and silences as much as moments of clarity. Therefore, I argue that medical anthropologists ought to attend more closely to the institutional structures and relations that shape the production of illness narratives in interview encounters.

The experiences and adaptations of abortion providers practicing under a new TRAP law: a qualitative study

OBJECTIVE Abortion laws are proliferating in the United States, but little is known about their impact on abortion providers. In 2011, North Carolina instituted the Womans Right to Know (WRTK) Act, which mandates a 24-h waiting period and counseling with state-prescribed information prior to abortion. We performed a qualitative study to explore the experiences of abortion providers practicing under this law. STUDY DESIGN We conducted semistructured interviews with 31 abortion providers (17 physicians, 9 nurses, 1 physician assistant, 1 counselor and 3 clinic administrators) in North Carolina. Interviews were audio-recorded and transcribed. Interview transcripts were analyzed using a grounded theory approach. We identified emergent themes, coded all transcripts and developed a thematic framework. RESULTS Two major themes define provider experiences with the WRTK law: provider objections/challenges and provider adaptations. Most providers described the law in negative terms, though providers varied in the extent to which they were affected. Many providers described extensive alterations in clinic practices to balance compliance with minimization of burdens for patients. Providers indicated that biased language and inappropriate content in counseling can negatively impact the patient-physician relationship by interfering with trust and rapport. Most providers developed verbal strategies to mitigate the emotional impacts for patients. CONCLUSIONS Abortion providers in North Carolina perceive WRTK to have a negative impact on their clinical practice. Compliance is burdensome, and providers perceive potential harm to patients. The overall impact of WRTK is shaped by interaction between the requirements of the law and the adaptations providers make in order to comply with the law while continuing to provide comprehensive abortion care. IMPLICATIONS Laws like WRTK are burdensome for providers. Providers adapt their clinical practices not only to comply with laws but also to minimize the emotional and practical impacts on patients. The effects on providers, frequently not a central consideration, should be considered in ongoing debates regarding abortion regulation.

Potentializing newborn screening

Virtually all 4.25 million babies born annually in the United States are screened for more than 50 rare genetic conditions. In a country plagued with widespread health-service access problems, this remarkable public health achievement depends on policy visions of newborn screening as the linchpin of secondary prevention and saving children’s lives. Based on ethnographic research and drawing from a semiotic framework, we illustrate that newborn screening has had a much wider range of effects in the clinic than those anticipated by policy makers. How does the disconnect between policy potential and clinical experience affect the technology? We demonstrate that only some discrepancies are considered in policy circles and that instead, parents, geneticists, and policy makers renew visions of potentiality that preserve the technology’s benefits in spite of evidence to the contrary. While rearticulating the potential of technologies may help actors cope with situations that do not measure up to expectations, the inevitable cost of reformulating potentiality once a technology has been implemented is that some accumulated experiences will be rendered invisible.

Reframing Conscientious Care: Providing Abortion Care When Law and Conscience Collide.

Much of the debate on conscience has addressed the ethics of refusal: the rights of providers to refuse to perform procedures to which they object and the interests of the patients who might be harmed by their refusals. But conscience can also be a positive force, grounding decision about offering care.

Teachable moments and missed opportunities for smoking cessation counseling in a hospital emergency department: a mixed-methods study of patient-provider communication

BackgroundWhile primary care medical clinics have been the most common setting for the delivery of advice about smoking cessation, the hospital emergency department (ED) is a valuable context for counseling medically underserved tobacco users. We conducted a secondary analysis based on a larger audio-recorded study of patient-provider communication about pain and analgesics in the ED. Within a sample of ED patients with back pain, the purpose of this mixed-methods study was to examine how physicians and nurse practitioners capitalize on “teachable moments” for health education to offer spontaneous smoking cessation counseling in the ED.MethodsPatients presenting to an academic ED with a primary complaint of back pain were invited to participate in a study of patient-provider communication. Audio-recorded encounters were transcribed verbatim. Two coders reviewed each transcript to determine whether smoking was discussed and to build a corpus of smoking-related discussions. We then developed inductively generated coding categories to characterize how providers responded when patients endorsed smoking behavior. Categories were refined iteratively to accommodate discrepancies.ResultsOf 52 patient-provider encounters during which smoking was discussed, two-thirds of the patients indicated that they were smokers. Providers missed opportunities for smoking cessation counseling 70% of the time. Eleven encounters contained teachable moments for smoking cessation. We identified four primary strategies for creating teachable moments: 1) positive reinforcement, 2) encouragement, 3) assessing readiness, and 4) offering concrete motivating reasons.ConclusionsMost providers missed opportunities to offer teachable moments for smoking cessation. In encounters that contained teachable moments, providers employed multiple strategies, combining general advice with motivation tailored to the patient’s particular circumstances. Creating motivational links to enhance smoking cessation efforts may be possible with a minimal investment of ED resources.

The management of autonomy in adolescent diabetes: a case study of triadic medical interaction

The transfer of responsibility for diabetes management from parent to child has been seen as a central challenge for the clinical care of adolescents with Type 1 diabetes. Research is needed to better understand how clinicians, patients, and families handle the delicate balance between parental involvement and adolescent responsibility for diabetes management. The aim of this study is to investigate the interactional processes by which an adolescents autonomy is facilitated and constrained in a clinical interaction between a nurse practitioner (NP), a 13-year-old diabetes patient, and the patients mother. Integrating psychological perspectives on adolescent autonomy and responsibility with conversation analytic approaches to participation, I examine participation frameworks and shifting alignments to illuminate the negotiation of adolescent autonomy within a single clinical encounter. The analysis demonstrates that the patients autonomy is emphasized while identifying problems, yet restricted when considering solutions. Clinical implications are discussed.