Source: WHO, World Report on Disability 2011
Goal: The one year goal is to establish a Global Alliance that engages faculty, external collaborators and students across learner levels to conduct an international mixed methods study of the impact of new acute onset disability at the individual, family, institutional, community and societal levels. We aim to determine the system of services and support needed for adults newly living with disability to achieve their greatest quality of life.
Objective 1 – Interdisciplinary Advisory Group: This Global Health Bass Connections project was developed using ecological systems theory (Figure). Recognizing during project conceptualization that theory terminology and application varied by discipline, we agreed that a broader community of experts could help guide the development of a common framework for this study. In the spring of 2016 (ahead of the project’s launch), an advisory group will be formed of a larger group of faculty and experts (see Section 3 Table 3 for faculty who have agreed to be advisors). These advisors will have broad input in defining the concepts of disability and systems, help reconcile contrasting terminology, and provide input into a framework that will guide the design and data collection efforts of the Alliance. This framework will be extended to our international partners for input and be prepared as the first interdisciplinary internationally advised methods paper from the Alliance and the first outcome from the Bass project in the summer of 2016. The advisory group will be further engaged in objectives 3-5.
Objective 2 – Pilot Studies: Over the summer of 2016, three students mentored by Drs. Staton and Bettger will pilot the mixed methods study in its entirety, collecting data at different levels of the framework, representing a low, middle and high income country (Tanzania, Argentina, United States, respectively). These pilots also support their individual course of study (postdoctoral fellowship project, global health master’s thesis and nursing doctoral student pilot, respectively). Their individual studies will be published. The synthesis of their experiences will support the objectives 3 and 4.
Objective 3 – Interdisciplinary Seminar and Multi-nation Systems Study: In a fall 2016 seminar course on “life with disability around the globe,” students at all levels will be paired with our global partners in 10 countries (Section 3 Table 1) to begin to understand the trajectory of health and the system that supports individuals with disability after an acute injury or illness. The seminar course will be facilitated by the project faculty leadership and a PhD-level teaching assistant. Readings done prior to meeting and short guest lectures from advisory group members will support in-class discussions for planning and implementing an in-depth systems evaluation. This multi-country evaluation will document the availability, access, attitudes, finances, and policies supporting individuals newly living with disability and their families leaving a hospitalization. Using a structured data collection protocol that is globally applicable and appropriate, student participants will collectively produce a multi-country comparison. With different learner levels in the course and engaged with this Bass project at Duke and abroad, the emphasis for evaluation will be placed on teamwork, peer mentoring, and completing a high quality scientifically sound study established from interdisciplinary consensus.
Objective 4 – Lived Experience: Duke faculty and their international collaborators will support global fieldwork for interested students in spring and summer 2017 to conduct patient and family observations (as approved by the Institutional Review Boards and host organization in each country). This focus on global disability is already a component of each lead faculty member’s existing research (Section 3 Table 1); however, by establishing the interdisciplinary Alliance including international partners and Duke campuses in China and Singapore, we will, for the first time, have a multi-country study on disability.
Objective 5 – Disseminate, Spread, Sustain and Innovate: By the end of the spring 2017 semester a website of our preliminary findings will be developed and a forum will be held. The forum will be both for dissemination locally and to get advisor and broader stakeholder input to plan for the following year. At minimum, we plan to expand the Alliance to include additional country partners in years to come (repeat objectives 3 and 4); identify studies from any host country that can be evaluated in a new country; identify grant funding; and with interest from the master’s program in Global Health, establish a course on global disability to begin in the 2017-2018 academic year. Our year two goal is to use our findings to develop interventions aimed to assist those newly living with disability to achieve their greatest quality of life.
Figure: Ecological framework to guide interdisciplinary discussion on systems supporting individuals newly living with disability