Date of Award

1-1-2016

Language

English

Document Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

College/School/Department

Department of Public Administration and Policy

Content Description

1 online resource (ii, 145 pages) : illustrations (some color)

Dissertation/Thesis Chair

Sue Faerman

Committee Members

David McCaffrey, James Tesoriero

Keywords

AIDS, Healthcare Reform, HIV, Patient Experience, AIDS (Disease), Patient satisfaction, Clinics

Subject Categories

Medicine and Health Sciences | Public Administration

Abstract

People with chronic conditions such as HIV/AIDS become experts through their extensive experience with healthcare organizations and so have valuable patient-centered insight into the organization of healthcare delivery services. The AIDS model of care, largely funded by the federal Ryan White Care Act, is a long-standing, yet understudied innovation with many similarities to “new” models such as the PCMH. This dissertation is designed to uncover the voices of patients on the patient experience at three HIV/AIDS outpatient clinics in New York State and to offer lessons for policymakers and healthcare leaders. Data was collected through in depth, semi-structured interviews of 52 HIV-positive patients spread across three clinical sites. Qualitative research is, arguably, better suited than quantitative research to uncover the hidden local knowledge of patients, knowledge about which researchers and practitioners might not otherwise think to ask. Grounded theory was used to analyze the data and produce a coherent, useful account. The respondents in this sample were overwhelmingly low-income people of color, most of whom recounted serious comorbidities, histories of trauma and/or previous bad experiences with healthcare organizations. On the whole, they prioritized their level of comfort at their outpatient clinic above all else and stressed the need for friendly staff at all levels who demonstrate care and concern through their behavior. Respondents generally expected wait times ≤ 15 minutes and other operational efficiencies, but were remarkably flexible with failings in logistics so long as staff explained the obstacles. They also valued close, long-term relationships with their primary care clinician, their case manager and often other staff. While they were largely very happy with their experience as patients, some respondents reported significant personnel changes at their clinics which made continuity of care difficult. The findings add to our understanding of the HIV/AIDS patient experience and the patient experience more generally, and suggest areas to focus more attention. Moreover, the experiences of patients at HIV/AIDS outpatient clinics provide insight into the benefits and challenges of building patient-centered coordinated primary care for people with chronic conditions which is among the chief goals of policymakers pursuing the triple aim.

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