Laura Lorenz | Brandeis University (original) (raw)

Laura Lorenz

LAURA IS A RESEARCHER, EVALUATOR, AND EDUCATOR with international experience communicating program, policy, and research impacts for global audiences. Her areas of expertise include qualitative, narrative, and visual research methods, community-based participatory research, lived experience with chronic conditions, disability policy, and translation of research findings to programming interventions and continuing education for healthcare professionals. Recent studies include a) innovative interventions to improve relational care for people with chronic brain injury, b) cost-effectiveness of residential services and supports for people with chronic brain injury, c) community integration of older adults with chronic brain injury, d) health and functional impacts of exercise for adults with chronic brain injury, e) evaluation of a continuing clinical education program for HIV/AIDS care, and f) lived experience with transitions to community living for adults with chronic brain injury. She is visiting scholar at the Schneider Institutes for Health Policy, Heller School for Social Policy and Management, Brandeis University and director of research and education for the non-profit organization Supportive Living.

Since 2004, Laura has been using innovative visual and narrative methods to include patient perspectives with health and healthcare in public policy-making. She became interested in brain injury because her brother, who was a youth hockey player in the 1960s and 70s, had multiple concussions and suffered cognitive and mental health challenges—perhaps as a result. Laura is Research & Education Director for Supportive Living in Lexington, MA. With Supportive Living Laura works with a group of multidisciplinary colleagues to plan and implement research on the physical, cognitive, and social fitness of people with chronic moderate-to-severe ABI.

Prior to getting her PhD, Dr Lorenz worked over 20 years in international development as a photo-journalist, writer, and editor for UNICEF, World Food Programme, CARE, the US Agency for International Development (USAID), and Management Sciences for Health among others. Her assignments often involved encouraging community partnerships, project replication, and behavior change—for example, to improve girls’ access to education. Since 2001 she has used photovoice (a participatory visual method of research) to engage youth, patients, and communities in picturing local problems and strengths and motivating action for change.

She has developed and taught graduate and undergraduate courses (Qualitative Research Methods and Introduction to Social Policy). She mentors students, serves as faculty for independent studies, serves on dissertation committees, and facilitates training workshops.

She has published in peer review journals in health, sociology, brain injury, managed care, and visual studies. She has published two books: Brain Injury Survivors: Narratives of Rehabilitation and Healing (Lynne Rienner Publishers, 2010) under their series and, as co-editor with Ron Berger, Disability and Qualitative Inquiry: Methods for Rethinking an Ableist World (Ashgate, 2015). Laura has also co-authored a policy issue brief in Massachusetts on the Continuum of care for chronic brain injury, and a national white paper on Harm reduction for out-of-treatment individuals with a grant from the Campaign for a New Drug Policy, Open Society Foundations.

Laura received her PhD in social policy (health policy/health services research) from Brandeis University (2008) and a Master of Education (Instructional Design/Adult Education) from the University of Massachusetts Boston (2001). She holds a BA in English Literature from Bowdoin College

- See more at: http://www.lslorenz.com/

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Books by Laura Lorenz

Ensuring knowledgeable, skilled HIV providers is challenged by rapid advances in the field, diver... more Ensuring knowledgeable, skilled HIV providers is challenged by rapid advances in the field, diversity of patients and providers, and the need to retain experienced providers while training new providers and supporting translation of new knowledge to practice. New England AIDS Education and Training Center (NEAETC) provides a range of educational modalities to HIV providers in six states. This 2013 to 2014 mixed-methods study found that since 2010 NEAETC evolved educational modalities to a greater focus on active learning (case discussion, clinical consultation) and decreased didactic training by half (18-9%). Tailored approaches (based on local priorities) resulted in improved provider-reported capacity, peer learning, and support, contributing to a community of practice for HIV care.

The Journal of Continuing Education in the Health Professions (JCEHP) February 2017;37(1):27-36. doi: 10.1097/CEH.0000000000000141.

Ashgate

Hardcover 258-Pages ISBN: 978-1472432896 (Ashgate) Publication Date: September 28 2015, **ISBN... more Hardcover 258-Pages ISBN: 978-1472432896 (Ashgate) Publication Date: September 28 2015, **ISBN: 978-0815392125 (now available in Paperback) - Publication Date: 11-22-2017

Description:

This groundbreaking text makes an intervention on behalf of disability studies into the broad field of qualitative inquiry. Ronald Berger and Laura Lorenz introduce readers to a range of issues involved in doing qualitative research on disabilities by bringing together a collection of scholarly work that supplements their own contributions and covers a variety of qualitative methods: participant observation, interviewing and interview coding, focus groups, autoethnography, life history, narrative analysis, content analysis, and participatory visual methods.

The chapters are framed in terms of the relevant methodological issues involved in the research, bringing in substantive findings to illustrate the fruits of the methods. In doing so, the book covers a range of physical, sensory, and cognitive impairments.

This work resonates with themes in disability studies such as emancipatory research, which views research as a collaborative effort with research subjects whose lives are enhanced by the process and results of the work. It is a methodological approach that requires researchers to be on guard against exploiting informants for the purpose of professional aggrandizement and to engage in a process of ongoing self-reflection to clear themselves of personal and professional biases that may interfere with their ability to hear and empathize with others..

CONTENTS

Preface; Disability and qualitative research, Ronald J. Berger and Laura S. Lorenz. Part 1 Observational Methods: A bricolage of urban sidewalks: observing locations of inequality, Valerie Leiter; Observations of a disability summer camp: the method of phenomenological seeing, Ronald J. Berger; Ethnographies of blindness: the method of sensory knowledge, Gili Hammer. Part 2 Interviews and Focus Groups: Staying true to their stories: interviews with parents of children with disabilities, Sara E. Green; Negotiating deafness and identity: methodological implications of interviewing with hearing loss, Melissa Jane Welch; Talking about sex: focus group research with people with disabilities, Sarah Smith Rainey. Part 3 Autoethnography and Life History Methods: Institutional resistance to accessible architecture and design: a collaborative autoethnography, Carla Corroto and Lucinda Kaukas Havenhand; ‘It’s not like you’re going to college anyway’: a performative autoethnography, Anjali J. Forber-Pratt; Recovery from spinal cord injury: a theorized life history, Ronald J. Berger. Part 4 Content Analysis and Visual Methods: Disability and humor in film and television: a content analysis, Ronald J. Berger; Living with brain injury: participatory visual methods and narrative analysis, Laura S. Lorenz; Sharing the results of visual methods research: participation, voice, and empowerment, Laura S. Lorenz and Maria Paiewonsky. References; Index.

About the Editors:

Ronald J. Berger is Professor Emeritus of Sociology at the University of Wisconsin-Whitewater. He has published more than 50 journal articles and book chapters, as well as 16 books, including Introducing Disability Studies; Hoop Dreams on Wheels: Disability and the Dedicated Wheelchair Athlete; Wheelchair Warrior: Gangs, Disability, and Basketball (with Melvin Juette); Disability, Augmentative Communication, and the American Dream: A Qualitative Inquiry (with Jon Feucht and Jennifer Flad); and Storytelling Sociology: Narrative as Social Inquiry (with Richard Quinney). Berger has received his university’s highest awards for both teaching and research, as well as the Wisconsin Sociological Association’s William H. Sewell Outstanding Scholarship Award.

Laura S. Lorenz is a senior research associate and lecturer at the Institute for Behavioral Health of the Schneider Institutes for Health Policy at Brandeis University, USA. She is Program Director for the Supportive Living Inc Wellness Center for Brain Injury Rehabilitation and Research in Lexington, MA working with inter-disciplinary colleagues to implement a program of research to support the social, cognitive, and physical rehabilitation of individuals living with chronic brain injury. Before coming to Brandeis, Dr. Lorenz worked for more than 20 years in international development as a writer, editor, and educator, focused on identifying and disseminating research, management improvement, and program results for global audiences, for agencies such as UNICEF, World Food Program, and the US Agency for International Development. Her assignments often involved encouraging partnerships, project replication, and behavior change. She has published in peer review journals in the fields of sociology, health, and visual studies.

Editorial Reviews

“This edited volume is a must read for anyone interested in the study of disability. It offers a variety of qualitative methodologies and methods, written in accessible language to a variety of disciplinary audiences, rendering it ideal for both undergraduate and graduate level programs. Readers will learn about interpretative ways to understand disability and the importance of exposing taken-for-granted disableist norms that inform our social practices, thus making visible the experience of social injustice as we re-think our relationships with each other.” "– Christina Papadimitriou, Northern Illinois University, USA

"This is an important book. It offers readers rich insights into the process of doing qualitative research. It opens up new research opportunities to work with disabled people and transfer knowledge in highly accessible ways. In so doing, how students, academics, and practitioners might do qualitative inquiry, understand disability, and challenge oppressive practices is expanded."

– Brett Smith, Loughborough University, UK

"What a gem! This book by Berger and Lorenz not only engages deeply with disability scholarship, but it’s also full of rigorous methodological insight. This book is crucial for anyone interested in researching topics in disability, but also for anyone wanting a greater understanding of a variety of qualitative research methods"

– Laura Mauldin, University of Connecticut, USA

ALTHOUGH MILLIONS OF PEOPLE ARE AFFECTED EACH YEAR BY BRAIN INJURIES, what it is like to live wit... more ALTHOUGH MILLIONS OF PEOPLE ARE AFFECTED EACH YEAR BY BRAIN INJURIES, what it is like to live with these injuries is often misunderstood. Dr Laura Lorenz delves into the experience of acquired brain injury (ABI) to reveal how survivors make sense of their changed circumstances - and how social policies and medical expectations can enhance, or detract from, their quality of life.

Brain Injury Survivors traces individual journeys from diagnosis through rehabilitation, and evokes the reality of living with brain injury. The book also tackles the systemic problems undercutting the quality of current medical and social support, and encourages a fresh approach to the patient-provider relationship for people with disabilities.

Students and practitioners of rehabilitation therapies, medicine, social science, and social policy will find this refreshing book to be informative and useful. Brain injury survivors and their families will recognize their own experiences and find hope. Clinicians will discover a new approach to improving their care for persons with hidden disabilities.

CONTENTS

Introduction
Acquired Brain Injury: What It Is and Why We Should Care
Learning from Brain Injury
Living with Frustration and Confusion
Encompassing Darkness and Light
Discovering a New Identity
Conclusion: Implications for Healing, Policy, and Future Research
Glossary

This chapter discusses participatory visual methods and their application in different social sci... more This chapter discusses participatory visual methods and their application in different social science research settings for the purpose of engaging individuals and communities in reflecting on and advocating for their subjective perspectives. We introduce the participatory visual methods photo interview and photovoice, which we have used in multi- and transdisciplinary research settings to create opportunities to bring patients and community residents into health and policy reflection processes. We reflect on issues of power, knowledge, and communication, and researcher-participant and researcher-researcher relationships. We provide examples of these methods as applied in our practice and describe ethical considerations and limitations related to their use.

In Imaginative inquiry: Innovative Approaches to Interdisciplinary Research, C. Fogel, El Quinlan, and A. Quinlan (Eds), pp 79-92. Palo Alto: Academica Press. ISBN: 9781936320431

This chapter describes using photovoice, a type of participatory action research, to generate vis... more This chapter describes using photovoice, a type of participatory action research, to generate visual and narrative data to spur action in a community. In Qualitative Research for the Social Sciences, M. Lichtman (Ed), Part-II The Qualitative Research Process Chapter 7, pp 173-178. Thousand Oaks: Sage Publications, Inc. ISBN: 9781412998642

Military Deployment and its Consequences for Families, 2013

This paper on children in Army families is the first to examine objective, non-self-report, measu... more This paper on children in Army families is the first to examine objective, non-self-report, measures of all health care utilization inclusive of prescription medications among children experiencing the deployment of a parent. It employs a quasi-experimental, pre–post, non-equivalent group design to compare changes in pediatric health care utilization. Multivariate difference-in-differences regression models isolate the effect of deployment on change in service usage comparing a period prior to deployment to a period starting with the parent’s deployment. The proportion of children using any specialist office visits showed a net increase, while the proportion with any generalist office visits showed a net decline. Post-hoc analysis revealed that these pediatric specialist visits were predominantly, not exclusively, for psychiatric-type services. There also was, in users of antidepressants prescriptions, a 28 % relative increase in children under age 12 and 18 % relative increase in children age 12 years and older. Policy and procedures to support the increased care coordination required of both primary care providers and parents of children who make use of psychiatric specialty services is important, especially since pediatric providers are often in the civilian, and not military, sector.

Chapter 6. In S. M. Wadsworth & D. Riggs (Eds.), Risk and resilience in U.S. military families (Vol. 2), Chapter 6 (pp 87-110). New York, NY: Springer. ISBN: 9781461487111

Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 2011

Brain injury patients often face a lack of empathy that leads to feelings of being disrespected a... more Brain injury patients often face a lack of empathy that leads to feelings of being disrespected and powerless. This article explores the use of photo-elicitation as one way to generate empathy in research (and clinical) relationships with acquired brain injury survivors through a re-examination of the process and products of photo-elicitation research conducted several years ago. The case starkly illustrates the limits of researcher empathy and analysis even as the ethics of visual methods create opportunities for participants to share research power, contest research analyses, and present an alternate view that displays health and strength as well as illness. The case prompts us to remain vigilant of the ways in which our personal lenses and histories affect what we see and shape our production of knowledge. Practicing empathy by using photos to create discursive spaces in research relationships may help us to learn about ourselves as we learn with patients...

In SAGE Visual Methods. Four-Volume Set, Hardcover, J. Hughes (Ed.), (Vol. IV), Chapter 55, (pp 84-100) London: SAGE Publications. July 2012, ISBN: 978-1446241028

Papers by Laura Lorenz

Visual Studies, Mar 1, 2013

through the juxtaposition of autonomous entries. In the case of this volume, Giorcelli argues tha... more through the juxtaposition of autonomous entries. In the case of this volume, Giorcelli argues that the book ‘reconsiders the cliché that clothes represent a “second skin” by showing how the body became an accessory within various political and artistic movements of the twentieth century’ (x). In this way the term ‘accessory’ has a double meaning. It refers to objects like jewellery and gloves, and it is also the theoretical concept of accessorising.

This workshop uses examples from two studies with vulnerable populations: women living in poverty... more This workshop uses examples from two studies with vulnerable populations: women living in poverty in Mexico and older adults with brain injury in the US to explore and gain practical experience with involving participants in visual data analysis. Photovoice and photo interviews engage people with limited power in their communities in contributing their knowledge to wider community conversations. The research process activates mind and voice as participants and researchers reflect on a topic of interest, express lived experience through photos and interviews (or group discussions), participate in visual analysis, and take action individually or in collaboration with nonprofit organizations. The photographs become spaces for reflective thought, discussion, and action in the research endeavor—and an opportunity for participants to share their expertise. We will briefly review participatory visual methods (photovoice and photo interview), before focusing on several photographs and related text from each study to reflect on individual and organizational empowerment in both contexts. Participants will work together to identify themes in groups of photos and text provided, and gain practice using arts-based methods to identify salient topics for discussion and thematic analysis. Participants will leave this workshop with practical ideas for (1) engaging research participants as partners in the research endeavor and (2) employing a theoretical framework to understand participants’ data (photos) and contextualizing (text) in a broader context. The workshop will close with review and discussion of best practices for participatory visual research analysis approaches that activate heart and mind, empower participants as partners in research, and support mutual learning among participants and researchers alike

Visual Studies, Mar 26, 2015

Visual Studies, Jun 1, 2012

Sociology of Health and Illness, Jun 21, 2010

Visual Studies, Dec 1, 2010

Brain injury can affect cognitive, emotional and physical functioning–consequences that pose chal... more Brain injury can affect cognitive, emotional and physical functioning–consequences that pose challenges to understanding survivors' perspectives on their lives. Furthermore, the injury may be invisible, even clinically, causing additional confusion for affected individuals, family members, co-workers and clinicians. The present study used photovoice with adult brain injury survivors so they could communicate their lived experience. Participants took photographs, discussed them, and selected some for captions. Half of their selected ...

Visual Studies, Mar 1, 2013

Book Review: A Field Guide to a New Meta-field: Bridging the Humanities-Neurosciences Divide. Vis... more Book Review: A Field Guide to a New Meta-field: Bridging the Humanities-Neurosciences Divide. Visual Studies, Vol 28, Issue 1, 2013, Available Online Taylor & Francis DOI:10.1080/1472586X.2012.717769. PP. 95-96

Lynne Rienner Publishers eBooks, Mar 1, 2010

The Journal of Continuing Education in the Health Professions (JCEHP) February 2017;37(1):27-36. doi: 10.1097/CEH.0000000000000141.

Ashgate

Description:

CONTENTS

About the Editors:

Editorial Reviews

– Brett Smith, Loughborough University, UK

– Laura Mauldin, University of Connecticut, USA

CONTENTS

In Imaginative inquiry: Innovative Approaches to Interdisciplinary Research, C. Fogel, El Quinlan, and A. Quinlan (Eds), pp 79-92. Palo Alto: Academica Press. ISBN: 9781936320431

Military Deployment and its Consequences for Families, 2013

Chapter 6. In S. M. Wadsworth & D. Riggs (Eds.), Risk and resilience in U.S. military families (Vol. 2), Chapter 6 (pp 87-110). New York, NY: Springer. ISBN: 9781461487111

Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 2011

In SAGE Visual Methods. Four-Volume Set, Hardcover, J. Hughes (Ed.), (Vol. IV), Chapter 55, (pp 84-100) London: SAGE Publications. July 2012, ISBN: 978-1446241028

Visual Studies, Mar 1, 2013

Visual Studies, Mar 26, 2015

Visual Studies, Jun 1, 2012

Sociology of Health and Illness, Jun 21, 2010

Visual Studies, Dec 1, 2010

Visual Studies, Mar 1, 2013

Lynne Rienner Publishers eBooks, Mar 1, 2010

Visual Studies, Mar 19, 2009

This densely scholarly book is a thorough analysis of 50 photographs and their accompanying text ... more This densely scholarly book is a thorough analysis of 50 photographs and their accompanying text produced by Norwegian evangelical missionaries working in Northern Cameroon from the early 1920s to the present day. The images and text serve as a venue for exploring the problematic power relationships between 'the North'and 'the South', and between 'giver'and 'receiver'. The author blatantly challenges our assumptions. The study of missionaries working in Africa is not 'boring and marginal'she argues (xi). Rather, their ...

Visual Studies, Jan 2, 2015

Book Review: (2015). Video Review: Extreme by Design. Visual Studies, Vol 30, Issue 1. Available ... more Book Review: (2015). Video Review: Extreme by Design. Visual Studies, Vol 30, Issue 1. Available Online Taylor & Francis DOI:10.1080/1472586X.2015.996417 PP. 100-101

Springer eBooks, Oct 24, 2013

Frontiers in Public Health, Dec 1, 2021

Health, Feb 18, 2011

Brain injury patients often face a lack of empathy that leads to feelings of being disrespected a... more Brain injury patients often face a lack of empathy that leads to feelings of being disrespected and powerless. This article explores the use of photo-elicitation as one way to generate empathy in research (and clinical) relationships with acquired brain injury survivors through a re-examination of the process and products of photo-elicitation research conducted several years ago. The ‘case’ starkly illustrates the limits of researcher empathy and analysis even as the ethics of visual methods create opportunities for participants to share research power, contest research analyses, and present an alternate view that displays health and strength as well as illness. The ‘case’ prompts us to remain vigilant of the ways in which our personal lenses and histories affect what we see and shape our production of knowledge. Practicing empathy by using photos to create discursive spaces in research relationships may help us to learn about ourselves as we learn with patients.

Archives of Physical Medicine and Rehabilitation, 2013

Archives of Physical Medicine and Rehabilitation, 2009

Background: For quality and health care policy improvement efforts for rehabilitation from brain... more Background:

For quality and health care policy improvement efforts for rehabilitation from brain injury to be realistic and fair, they need to involve all stakeholders, including survivors, in analyzing the situation, exploring possibilities, and evaluating and learning from the policy development process. Failure to include the survivor's perspective is a justice issue; it is also an issue of fair process. Yet incorporating the brain injury survivor's perspective into health care improvement efforts is problematic, as they may face challenges in reflecting on their situation, developing their ideas, and communicating them. These challenges require a creative approach to eliciting their perspective on this chronic condition. The author and two survivor co-facilitators led a 10-week photovoice project with eight brain injury survivors. The project was intended to provide an opportunity for participants to reflect on living with brain injury and their progress in dealing with this major life change, raise awareness about brain injury, and help policymakers understand ways to support healing from this injury. Photovoice involves working in a group to represent lives, experience, and point of view using photographs and narratives. This study actualized fair process at both a micro and a macro level at an interpersonal level within the group and at a societal level in the context of health care quality and policy development. This presentation will provide an overview of fair process and relate experiences and lessons learned from this participatory attempt to cross the quality and health care chasm related to rehabilitation from brain injury.

135th Annual Meeting and Exposition, American Public Health Association (APHA)
Washington, DC, November 3-7, 2007.

Background: For quality and health care policy improvement efforts for rehabilitation from brain ... more Background:
For quality and health care policy improvement efforts for rehabilitation from brain injury to be realistic and fair, they need to involve all stakeholders, including survivors, in analyzing the situation, exploring possibilities, and evaluating and learning from the policy development process. Failure to include the survivor's perspective is a justice issue; it is also an issue of fair process. Yet incorporating the brain injury survivor's perspective into health care improvement efforts is problematic, as they may face challenges in reflecting on their situation, developing their ideas, and communicating them. These challenges require a creative approach to eliciting their perspective on this chronic condition. The author and two survivor co-facilitators led a 10-week photovoice project with eight brain injury survivors. The project was intended to provide an opportunity for participants to reflect on living with brain injury and their progress in dealing with this major life change, raise awareness about brain injury, and help policymakers understand ways to support healing from this injury. Photovoice involves working in a group to represent lives, experience, and point of view using photographs and narratives. This study actualized fair process at both a micro and a macro level at an interpersonal level within the group and at a societal level in the context of health care quality and policy development. This presentation will provide an overview of fair process and relate experiences and lessons learned from this participatory attempt to cross the quality and health care chasm related to rehabilitation from brain injury.

Visual Studies, 2013

Book Review: Imagining Illness: Public Health and Visual Culture. Visual Studies, Vol 28, Issue 1... more Book Review: Imagining Illness: Public Health and Visual Culture. Visual Studies, Vol 28, Issue 1, 2013, Available Online Taylor & Francis DOI:10.1080/1472586X.2012.717768. PP. 102-103

Visual Studies, 2009

This densely scholarly book is a thorough analysis of 50 photographs and their accompanying text ... more This densely scholarly book is a thorough analysis of 50 photographs and their accompanying text produced by Norwegian evangelical missionaries working in Northern Cameroon from the early 1920s to the present day. The images and text serve as a venue for exploring the problematic power relationships between the North and the South, and between giver and receiver. The author blatantly challenges our assumptions. The study of missionaries working in Africa is not boring and marginal she argues (xi). Rather, their ...

Visual Studies, 24(1), pp. 86-87(2). Available Online Taylor & Francis DOI: 10.1080/14725860902733049

Visual Studies, 2015

Visual Studies, 2012

This excellent book is the 20th volume of the Visible Evidence series published by the University... more This excellent book is the 20th volume of the Visible Evidence series published by the University of Minnesota Press. The author was parsimonious in his use of visuals, of which there are just 27 black and white photographs: 24 taken by the author during field work and in the United States while accompanying Bolivian indigenous filmmakers to screenings of their films, and three archival images supplied by Cinematica Bolivia. Nine photographs show production-in-progress or television screen captures of a popular local television ...

Visual Studies, Vol 27, Issue 3, 2012. Available Online Taylor & Francis DOI:10.1080/1472586X.2012.642969. PP 313-314

Visual Studies, Mar 26, 2015

Acquired brain injury (ABI) is a major public health problem in Massachusetts (Hackman et al, 201... more Acquired brain injury (ABI) is a major public health problem in Massachusetts (Hackman et al, 2014) and includes traumatic brain injury (TBI), stroke, ABI-related infectious diseases, metabolic disorders affecting the central nervous system (brain and spinal cord), and brain tumor. Advances in emergency medical care and neurosurgery mean that more people are surviving severe traumatic brain injury (Trexler et al, 2014). Yet many patients with severe TBI in particular, are not receiving inpatient services after initial treatment (Hackman et al, 2014; CDC, 2014) or later that are known to be effective (Malec & Kean, 2015; Lewis & Horn, 2015; BI Commission, 2011; Kolakowsky-Hayner et al, 2000; Interviews). These services include post-acute rehabilitation, case management, and brain injury-specific community programming (CDC, 2014; BI Commission, 2011; Interviews). Governance and data for decision-making are also major gaps in the continuum of care for severe brain injury in MA (Interviews; NASHIA, 2005).

The last two decades saw a surge in interest in the brain, with advances in neuroscience, diagnosis and measurement of brain injury, rehabilitation services, and brain theory (Boyle, 2001). Severe brain injury however is the new “hidden epidemic” in our society. For many, an injury to the brain is not a short-term event that can be “cured” but the beginning of a life-long disability (CDC, 2014; Langlois et al, 2006). Fortunately, even after a severe brain injury, when the right rehabilitation is provided at the right time, the “rest of life” journey can be a positive one for many (Marquez de la Plata, 2015; Langlois et al, 2006). Severe brain injury can lead to a “new normal” as patients regain skills, find new meaning and in life, and take on new family, volunteer, and work roles.
Throughout this brief, the term “severe brain injury” refers to “severe acquired brain injury,” or any injury to the brain that occurs after birth.

This definition does not include neurodegenerative disorders such as Alzheimer’s Disease, Multiple Sclerosis, and Parkinson’s Disease which do not usually result in an acute hospital admission. Clinically, severe TBI is defined as resulting in loss of consciousness for 6 to 24 hours or more (Corrigan et al, 2010; CDC, 2014). Yet even a “mild” TBI can result in long-term functional impairments (Corrigan et al, 2010) for an estimated 15 to 30% of people (Lewine et al, 2007; Cajigal, 2007). In the chronic phase of acquired brain injury from any cause, lifelong disabilities may affect the ability to work, perform activities of daily living (dressing, paying bills), participate in community life, and/or fulfill a family role.

View an impactful video of testimony from Acquired Brain Injury (ABI) Survivors for "Severe Brain Injury in Massachusetts Accessing the Continuum of Care" a Massachusetts Health Policy Forum Dec 10, 2015, Boston MA. https://www.youtube.com/watch?v=Fes73w5iyTI Video (8:57 min)

This White Paper advocates that communities adopt and expand upon a range of approaches that can ... more This White Paper advocates that communities adopt and expand upon a range of approaches that can improve upon personal, family, and community health outcomes by reducing the harm of alcohol and drug use. The paper provides a range of practice, program, and policy examples from personal health care settings, addiction systems of care, and community coalitions.

Larson, MJ and Laura LS. (2013, October). Upstream Opportunities for Reducing the Harm of Alcohol and Drug Use. Waltham: Brandeis University, Schneider Institutes for Health Policy, Institute for Behavioral Health, Heller School for Social Policy and Management with a grant from the Campaign for a New Drug Policy, Open Society Foundations

White Paper Url: OSF-Final-Report--10302013-MJL

Abstract: Learning Objectives - Following the workshop, participants will be able to: • Describ... more Abstract:
Learning Objectives - Following the workshop, participants will be able
to:
• Describe how a PBE research program can inform decision-making and quality of care;
• Engage colleagues in discussing benefits, challenges, and strengths related to developing a PBE research program in their setting;
• Identify ways to integrate PBE into local programming and quality improvement efforts.

The Independent Research Study program at Brandeis University offers an excellent opportunity for... more The Independent Research Study program at Brandeis University offers an excellent opportunity for undergraduate students to integrate academic learning with faculty-sponsored field research to create a holistic and rigorous student-faculty learning experience. We will describe and critically reflect on a specific example of this program in action during the 2014-2015 academic year, when a Brandeis undergraduate and a faculty member collaborated on an interactive, hands-on research study using both qualitative (Photovoice and photo-elicitation) and quantitative (survey) methods to understand community integration of five older adults with acquired brain injury and other neurological conditions in one Massachusetts community. In exploring our processes and experiences, we will examine three types of study data and the mutual learning that took place: visual data (photographs) and narrative data (photo captions and interviews) generated by participants as they explored environmental and personal factors related to their community integration in an 8-week Photovoice project and subsequent photo-elicitation interviews, and quantitative data from a pre-post survey intended to understand the impact (if any) of Photovoice participation on participants' Satisfaction with Life. We will present our processes for collecting and analyzing these data and our perspectives on our mutual learning, challenges, and study findings. We will suggest strategies for future student-faculty collaborations using participatory visual and mixed methods to explore deeply personal topics with critical health policy implications.

2016 86th Annual Meeting, Eastern Sociological Society, Boston Park Plaza, Boston, MA, March 18.

Abstract: This workshop provides an update on (1) the science-base for community-based programmin... more Abstract: This workshop provides an update on (1) the science-base for community-based programming to maximize physical, cognitive, and social health of individuals with moderate-to- severe disabilities from brain injury; (2) outcomes used to measure benefits of participation in community-based programming; and (3) challenges and supports to program sustainability and outcomes.

Abstract: Background and Purpose Effects of high-intensity group exercise on the endurance, ad... more Abstract:

Background and Purpose
Effects of high-intensity group exercise on the endurance, advanced mobility, and gait speed of adults with chronic severe acquired brain injury (ABI) living in brain injury group homes were investigated. In a
subsequent qualitative study, supports and barriers related to participation in exercise from the perspectives of participants, residential staff and family members were investigated.

Participants

Fourteen adults with chronic severe ABI in supported independent living who could stand with minimal or no assist and walk with or without ambulation device were studied. Initially, eight presented with low ambulatory status, six with high ambulatory status. Interviews were
conducted with all 14 intervention subjects, one person who dropped out, four family members and four residential staff.

Methods

Participants received a 6-week high-intensity exercise group intervention for 60-90 minutes, 3 days per week assisted by personal trainers under physical therapist supervision. Measures (6 Minute Walk Test, High-level Mobility Assessment Tool, and 10 Meter Walk Test) were collected at baseline, post-intervention, and 6 weeks later. Analysis included repeated measures T test and the Wilcoxon Signed Ranks Test. The qualitative study involved a brief survey and semi-structured interviews conducted 2
-6 months after the intervention, audio recorded and transcribed verbatim. Analysis used pre-existing and emerging codes (concepts), and data were double coded using qualitative data analysis software (atlas.ti).

Results

Significant post-intervention group improvements were achieved on all three outcome measures (6 MWT, HiMAT, and 10MWT) and greater than the minimal detectable change (MDC) for this population. 10MWT outcomes indicate that three participants transitioned from low to high
ambulatory status and maintained the change six weeks later. Qualitative findings identified environmental and personal barriers and supports. Environmental barriers to participation included transportation (inconsistent, delayed), group format (not always person-centered), and negative family attitudes towards programming developed in-house. Personal barriers to participation were physical (vision, balance, incontinence), cognitive (memory, executive function, lack of self-awareness), behavioral (anxiety),and tendency toward a sedentary lifestyle (watching television). Environmental barriers to being physically active between exercise sessions included: staff fear for participant safety, broken outdoors equipment, and lack of access to supportive affordable fitness opportunities for this population. Environmental and personal supports for participation included enthusiasm of trainers, group format (encouraged mutual support), investments in transportation, pre-injury participation in sports, and motivation to do something meaningful that involved interacting with others.

Discussion and Conclusion

People living with chronic ABI can improve endurance, demonstrate ability to do advanced gait, and improve ambulatory status with six weeks of intensive exercise. Challenges to sustainability of exercise programs for people with chronic severe ABI include costs and transportation. Efforts to support better lifestyle choices (improved nutritional choices, increased physical activity between sessions) are needed to enhance functional benefits of the intervention.

Making Visible the Invisible: Understanding Lived Experience with Acquired Brain Injury through ... more Making Visible the Invisible: Understanding Lived Experience with Acquired Brain Injury through Visual Illness Narratives.

A Dissertation Presented to the Faculty of the Heller School of Social Policy and Management, Brandeis University.

By Laura S. Lorenz
March 17, 2008

ABSTRACT:

Background

• TBI affects between 1.4 and 3 million people and
incurs costs of $48 to 56 billion.
• 5.3 million Americans are living with long-term
disabilities from TBI.
• 20-40% of soldiers returning home from Iraq and
Afghanistan have TBI.
• Quality of care is a global challenge for ABI
patients and long-term survivors.

Every year in the U.S. TBI affects between 1.4 and 3 million people (Langlois et al.,
2004; Krause & Chu, 2005) and incurs costs of $48 to 56 billion.

More than 5 million Americans are living with disabilities from TBI (Langlois et al, 2006), and an estimated 98,000 join their numbers every year (Kraus & Chu, 2005).

TBI is the characteristic injury of the Iraq and Afghanistan conflicts, with an
estimated 20 to 40% of soldiers returning home with this injury.

Quality of care is a global challenge for survivors of ABI. Qualitative research
studies in four countries show that survivors experience lack of recognition and
support from health providers for their injury and what they are going through.
Getting a diagnosis can take years. People are told they have psychiatric problems.
They are not informed about risks, diagnoses, sequelae, or options for rehabilitation
services and health care coverage...

n the US, various groups experience stigma and oppression due to their race, poverty, disability,... more n the US, various groups experience stigma and oppression due to their race, poverty, disability, or health or immigration status. Social policies designed without their input can exacerbate gaps between policy goals and outcomes, and negative societal attitudes can lead to self-stigma. This panel will describe photovoice studies with a range of stigmatized populations. Presentations will discuss their respective approaches, analysis methods, findings, and engagement and empowerment

A video describing an intensive exercise program for people with disabilities from acquired brain... more A video describing an intensive exercise program for people with disabilities from acquired brain injury, showing exercise program in action, interviews with a researcher, interns supporting the program, and people participating in the program.

Talking with Pictures is a participatory project that looked with fresh eyes at community integra... more Talking with Pictures is a participatory project that looked with fresh eyes at community integration of older adults with brain injury and other neurological conditions in Lexington, MA. It is a project of Supportive Living Inc. that was supported by the Dana Home Foundation.

View an impactful video of testimony from Acquired Brain Injury (ABI) Survivors for "Severe Brain... more View an impactful video of testimony from Acquired Brain Injury (ABI) Survivors for "Severe Brain Injury in Massachusetts Accessing the Continuum of Care" a Massachusetts Health Policy Forum Dec 10, 2015, Boston MA. https://www.youtube.com/watch?v=Fes73w5iyTI Video (8:57 min)

Abstract: The Institute of Medicine has targeted patient-centeredness as an important area of qu... more Abstract: The Institute of Medicine has targeted patient-centeredness as an important area of quality improvement. A major dimension of patient-centeredness is respect for patient's values, preferences, and expressed needs. Yet specific approaches to gaining this understanding and translating it to quality care in the clinical setting are lacking.

JoVE - Journal of Visualized Experiments (Video Journal)
Date Published: 2/16/2011, Issue 48 e2342; doi: 10.3791/2342