The New Normal: Families, Caretakers, and Adults with Autism

Over the last several decades, the clinical prevalence of autism has increased considerably, as has the amount of popular and scientific attention directed towards the condition. However, discussions of autism tend to focus on children and finding a cause and a cure, while the growing numbers of adults diagnosed with autism have received relatively little attention. This dissertation begins with the argument that popular representations of autism are shaped by the idealism of modern medicine, and its overriding search to discover etiologies and treatments for all forms of biological difference that fall within its purview. And yet, for those responsible for adults with autism, management, care, and support are more relevant concerns to everyday experience than are cause and cure. In order to describe and analyze this everyday experience, this dissertation features a three-year ethnographic study of thirteen families with adult members with severe forms of autism. After reviewing pertinent historical and demographic information, the body of the manuscript explores: 1) the process by which caretakers negotiate between different definitions of problem behavior in the face of persistent situational complexity and ambiguity; 2) the contextual dynamics that make it possible for caretakers to perceive as innocent and/or humorous behaviors that are often viewed as atypical by others; and 3) the ways in which the experience of continued atypicality and dependency comes into conflict with popular representations of autism while at the same time highlighting the reality of the ever-looming future and the care and support required after primary caretakers are gone. At the end of the dissertation, I return to the argument that modern medical idealism discourages popular recognition that, in the case of autism, continued atypicality and dependency constitute the condition\u27s usual prognosis. I conclude with a short consideration of how the themes explored in this thesis resonate with the experiences of those living with or alongside other forms of biological difference (e.g. disability, mental illness, Alzehemier\u27s) that are currently incurable

Understanding Healing Relationships in Primary Care

PURPOSE Clinicians often have an intuitive understanding of how their relationships with patients foster healing. Yet we know little empirically about the experience of healing and how it occurs between clinicians and patients. Our purpose was to create a model that identifies how healing relationships are developed and maintained

Understanding healing relationships in primary care.

PURPOSE: Clinicians often have an intuitive understanding of how their relationships with patients foster healing. Yet we know little empirically about the experience of healing and how it occurs between clinicians and patients. Our purpose was to create a model that identifies how healing relationships are developed and maintained. METHODS: Primary care clinicians were purposefully selected as exemplar healers. Patients were selected by these clinicians as having experienced healing relationships. In-depth interviews, designed to elicit stories of healing relationships, were conducted with patients and clinicians separately. A multidisciplinary team analyzed the interviews using an iterative process, leading to the development of case studies for each clinician-patient dyad. A comparative analysis across dyads was conducted to identify common components of healing relationships RESULTS: Three key processes emerged as fostering healing relationships: (1) valuing/creating a nonjudgmental emotional bond; (2) appreciating power/consciously managing clinician power in ways that would most benefit the patient; and (3) abiding/displaying a commitment to caring for patients over time. Three relational outcomes result from these processes: trust, hope, and a sense of being known. Clinician competencies that facilitate these processes are self-confidence, emotional self-management, mindfulness, and knowledge. CONCLUSIONS: Healing relationships have an underlying structure and lead to important patient-centered outcomes. This conceptual model of clinician-patient healing relationships may be generalizable to other kinds of healing relationships

Social Network Analysis as an Analytic Tool for Interaction Patterns in Primary Care Practices

PURPOSE Social network analysis (SNA) provides a way of quantitatively analyzing relationships among people or other information-processing agents. Using 2 practices as illustrations, we describe how SNA can be used to characterize and compare communication patterns in primary care practices. METHODS Based on data from ethnographic field notes, we constructed matrices identifying how practice members interact when practice-level decisions are made. SNA software (UCINet and KrackPlot) calculates quantitative measures of network structure including density, centralization, hierarchy and clustering coefficient. The software also generates a visual representation of networks through network diagrams. RESULTS The 2 examples show clear distinctions between practices for all the SNA measures. Potential uses of these measures for analysis of primary care practices are described. CONCLUSIONS SNA can be useful for quantitative analysis of interaction patterns that can distinguish differences among primary care practices

Electronic Medical Records and Diabetes Quality of Care: Results From a Sample of Family Medicine Practices

PURPOSE Care of patients with diabetes requires management of complex clinical information, which may be improved by the use of an electronic medical record (EMR); however, the actual relationship between EMR usage and diabetes care quality in primary care settings is not well understood. We assessed the relationship between EMR usage and diabetes care quality in a sample of family medicine practices

Delivery of Clinical Preventive Services in Family Medicine Offices

BACKGROUND This study aimed to elucidate how clinical preventive services are delivered in family practices and how this information might inform improvement efforts. METHODS We used a comparative case study design to observe clinical preventive service delivery in 18 purposefully selected Midwestern family medicine offices from 1997 to 1999. Medical records, observation of outpatient encounters, and patient exit cards were used to calculate practice-level rates of delivery of clinical preventive services. Field notes from direct observation of clinical encounters and prolonged observation of the practice and transcripts from in-depth interviews of practice staff and physicians were systematically examined to identify approaches to delivering clinical preventive services recommended by the US Preventive Services Task Force. RESULTS Practices developed individualized approaches for delivering clinical preventive services, with no one approach being successful across practices. Clinicians acknowledged a 3-fold mission of providing acute care, managing chronic problems, and prevention, but only some made prevention a priority. The clinical encounter was a central focus for preventive service delivery in all practices. Preventive services delivery rates often appeared to be influenced by competing demands within the clinical encounter (including between different preventive services), having a physician champion who prioritized prevention, and economic concerns. CONCLUSIONS Practice quality improvement efforts that assume there is an optimal approach for delivering clinical preventive services fail to account for practices’ propensity to optimize care processes to meet local contexts. Interventions to enhance clinical preventive service delivery should be tailored to meet the local needs of practices and their patient populations

Delivery of clinical preventive services in family medicine offices.

BACKGROUND: This study aimed to elucidate how clinical preventive services are delivered in family practices and how this information might inform improvement efforts. METHODS: We used a comparative case study design to observe clinical preventive service delivery in 18 purposefully selected Midwestern family medicine offices from 1997 to 1999. Medical records, observation of outpatient encounters, and patient exit cards were used to calculate practice-level rates of delivery of clinical preventive services. Field notes from direct observation of clinical encounters and prolonged observation of the practice and transcripts from in-depth interviews of practice staff and physicians were systematically examined to identify approaches to delivering clinical preventive services recommended by the US Preventive Services Task Force. RESULTS: Practices developed individualized approaches for delivering clinical preventive services, with no one approach being successful across practices. Clinicians acknowledged a 3-fold mission of providing acute care, managing chronic problems, and prevention, but only some made prevention a priority. The clinical encounter was a central focus for preventive service delivery in all practices. Preventive services delivery rates often appeared to be influenced by competing demands within the clinical encounter (including between different preventive services), having a physician champion who prioritized prevention, and economic concerns. CONCLUSIONS: Practice quality improvement efforts that assume there is an optimal approach for delivering clinical preventive services fail to account for practices\u27 propensity to optimize care processes to meet local contexts. Interventions to enhance clinical preventive service delivery should be tailored to meet the local needs of practices and their patient populations