Susan Magasi

Northwestern University | NU · Department of Medical Social Sciences

Objective The aim of this study was to explore instruction of social determinants of health (SDOH) for people with disabilities (PWD) in Doctor of Physical Therapy (DPT) education programs. Methods A sequential mixed methods study informed by a 5-member disability community advisory panel was conducted. Qualitative semi-structured interviews with...

Background. One in 5 people in the United States live with disability; however, the public health needs of this community have been largely overlooked. Although U.S. law mandates the availability of accessible medical exam equipment, people with mobility disabilities (PWMD) frequently encounter barriers that require self-advocacy to receive basic p...

Date Presented 04/21/2023 Supports are needed to address the preparedness and mutuality of patients with mechanical circulatory support and their caregivers. OT interventions can promote daily participation as well as physical and mental health for dyads. Primary Author and Speaker: Ricardo Daniel Ramirez Additional Authors and Speakers: Susan Maga...

Objective The Our Peers-Empowerment and Navigational Support (OP-ENS) community-based participatory research study developed, implemented, and evaluated a peer navigator intervention aimed at improving health and healthcare access among Medicaid beneficiaries with disabilities. Peer navigators are community partners with physical disabilities train...

Accessible Summary • This project focuses on people with intellectual disabilities and dementia that live in group homes or care facilities in the United States. • People in this project shared how their life changed as they got older. They talked about where they live, what they do for work and how they get to spend their day. • All the people in...

Genetic counselors have an important role in offering and appropriate coordinating abortion services for patients identified with a fetal abnormality. Few studies have been conducted to determine the effects of legislation on genetic counselors and patients. This study aimed to further our understanding of genetic counselors’ perception of the impa...

Importance: Disability studies–informed occupational therapy is predicated on full and equal partnerships among occupational therapy practitioners, researchers, and disability communities. Community-based participatory research (CBPR) is an approach to research that aligns with this vision yet is not without challenges. Understanding the tensions t...

In the National Children's Study (NCS), assessments were proposed and developed that used a wide range of modes of administration (e.g., direct in-person interviews, telephone interviews, computer assisted interviews, self-administered questionnaires, real time and recall observations, and physical examinations). These modes of administration may p...

Peer support is a central tenant of the Disability Rights Movements and is based on the recognition that experiential knowledge and shared experiences provide opportunities for informational, emotional and appraisal support amongst people with physical disabilities. “Peer support interventions” is an umbrella term used to describe a range of ancill...

Objectives To develop item banks of social attitude barriers and facilitators to participation and validate them with established instruments. Design We used the Rasch model to identify misfitting items and rating scale problems, calibrate items, and develop KeyForms and short forms. Correlations between the Social Attitude Barriers and Facilitato...

People with disabilities (PWD) are a health disparities population who experience well-documented physical, structural, attitudinal, and financial barriers to health care. The disability rights community is deeply engaged in advocacy to promote health care justice for all PWD. As the community continues to work toward systems change, there is a cri...

There are 56.7 million people with disabilities (PWD) living in the United States; yet, PWD are significantly underrepresented in health research. Even when researchers purposively seek to include PWD in studies, challenges emerge related to recruitment and retention, leading to inadequate representation and surface understandings of this populatio...

In many states, abortion laws are becoming increasingly restrictive. Prenatal genetic counselors often see patients after the diagnosis of a fetal abnormality or genetic disorder and discuss the option of termination of pregnancy. The purpose of this study was to understand prenatal genetic counselors' perspectives on how state abortion laws impact...

Background: Clinical and US regulatory guidelines for patients with mechanical circulatory support (MCS) require the identification of a caregiver to assist with MCS care. There is limited understanding of the impact of MCS caregiving on patients and caregivers. The purpose of this study was to examine how living with MCS affects the quality of li...

Background: Cancer care for people with disabilities (PWD) is rife with uncertainty and obstacles. Not only do PWD have to contend with cancer and treatment-related sequelae, but also its impact on disabling conditions and functional capacity, as well as a health care system lacking accessibility and disability competence. Peer support can address...

Background: Women with disabilities are an unrecognized cancer disparities population who experience well-documented barriers to breast cancer screening. There is a critical need for targeted, community-directed programing to address these disparities. Objectives: To describe the trajectory of a long-term community-academic partnership aimed at...

Date Presented 4/20/2018 This ethnography explored the collaborative process of a community-based participatory research (CBPR) team, which was shaped by team members’ various occupational identities. Dual identities, although at times challenging to navigate, may serve as a bridge, facilitating collaboration in CBPR teams. Primary Author and Speak...

Date Presented 4/21/2018 We describe the development, feasibility, acceptability, and preliminary findings of an occupational therapist–disability peer led intervention—Health Care Survival Skills—designed to help people with physical disabilities engage in the occupation of negotiating the health care system. Primary Author and Speaker: Susan Maga...

Objectives: First, to evaluate the frequency with which individuals with neurological conditions require test administration accommodations for the NIH Toolbox-Cognition Battery (NIHTB-CB). Second, to evaluate the appropriateness of accommodations provided by administrators, including adherence to NIHTB-CB Reasonable Accommodations Guidelines. Me...

Purpose/objective: To compare the cognitive profiles of a well-characterized sample of adults with and without spinal cord injury (SCI) using the NIH Toolbox Cognition Battery NIHTB-CB. Research Method/Design: Participants were 156 community-dwelling individuals with SCI recruited from 3 academic medical centers, and 156 individuals without SCI se...

Principles of fairness in testing require that all test takers, including people with disabilities, have an equal opportunity to demonstrate their capacity in the construct being measured. Measurement design features and assessment protocols can pose barriers for people with disabilities. Fairness in testing is a fundamental validity issue at all p...

Objective: To test the effect that indicators of mobility device quality have on participation outcomes among community dwelling adults with spinal cord injuries (SCI), traumatic brain injuries (TBI) and stroke using structural equation modeling. Design: Survey, cross-sectional study, and model testing. Setting: Clinical research space at 2 ac...

Objectives: The present study examined differences in neurocognitive outcomes among non-Hispanic Black and White stroke survivors using the NIH Toolbox-Cognition Battery (NIHTB-CB), and investigated the roles of healthcare variables in explaining racial differences in neurocognitive outcomes post-stroke. Methods: One-hundred seventy adults (91 B...

Objective: To identify factors underlying heart failure hospitalization. Methods: Between January 1, 2012, and May 31, 2012, we combined medical record reviews and cross-sectional qualitative interviews of multiple patients with heart failure, their clinicians, and their caregivers from a large academic medical center in the Midwestern United St...

Objectives: To conduct a longitudinal evaluation of Patient-Reported Outcomes Measurement Information System (PROMIS) social function measures (satisfaction with participation in social roles and satisfaction with participation in discretionary social activities) in English-speaking people with chronic health conditions. Study design and setting:...

IntroductionThe Patient-Reported Outcomes Measurement Information System (PROMIS)® Sexual Function and Satisfaction measure (SexFS) version 1.0 was developed with cancer populations. There is a need to expand the SexFS and provide evidence of its validity in diverse populations.AimThe aim of this study was to describe the development of the SexFS v...

Trends in policy, practice, and research point to the need for a community-engaged Scholarship of Practice (SOP) model that can be used to inform the development of occupational therapy practitioners, educators, and researchers. This article describes a community-engaged SOP model, the evidence justifying the need for such a model, and strategies t...

Generic and heart failure (HF)-specific health-related quality of life (HRQOL) instruments do not address unique burdens of mechanical circulatory support (MCS). This report describes (1) a conceptual model of adjustment to MCS and HRQOL, (2) the development of a new set of items to assess adjustment and HRQOL, and (3) establishes content validity...

Objective: To describe environmental factors that influence participation of people with disabilities. Design: Constant comparative, qualitative analyses of transcripts from 36 focus groups across 5 research projects. Setting: Home, community, work, and social participation settings. Participants: Community-dwelling people (N=201) with diver...

The ascendance of the World Health Organization's International Classification of Functioning, Disability and Heath (ICF) as the global standard for describing and characterizing aspects of disability has refocused attention on the role that environmental factors (EFs) have on the health and participation of people with disabilities, both as indivi...

Objectives To develop a measure of natural environment and human-made change features (Chapter 2 of the international classification of functioning, disability, and health) and evaluate the influence of perceived barriers on health-related quality of life. Methods A sample of 570 adults with stroke, spinal cord injury, and traumatic brain injury re...

Background: Upper limb transplantation is a life-enhancing rather than life-saving procedure. Little research has investigated how individuals with upper limb amputations perceive the benefits and risks of this complex procedure. To address this knowledge gap, the authors conducted qualitative research with individuals with upper limb amputations...

Objective To describe the development of new self-report measures of social attitudes that act as environmental facilitators or barriers to the participation of people with disabilities in society. Design A mixed methods approach included a literature review; item classification, selection and writing; cognitive interviews and field testing with p...

To describe methods used in operationalizing environmental factors, to describe the results of a research project to develop measures of environmental factors that affect participation, and to define an initial item set of facilitators and barriers to participation following stroke, traumatic brain injury, and spinal cord injury. Instrument develop...

Objective: To evaluate the psychometric properties and validity of an expanded set of community enfranchisement items that are suitable for computer adaptive testing. Design: Survey. Setting: Community setting. Participants: Individuals with disabilities (N=1163) were recruited from an online panel generation company (51%), former rehabilita...

Motor function involves complex physiologic processes and requires the integration of multiple systems, including neuromuscular, musculoskeletal, and cardiopulmonary, and neural motor and sensory-perceptual systems. Motor-functional status is indicative of current physical health status, burden of disease, and long-term health outcomes, and is inte...

To evaluate patients' and caregivers' abilities to comprehend information on rehabilitation quality measures, and select high-quality rehabilitation facility. We used exploratory, qualitative study using cognitive interviewing. Three Outpatient rehabilitation facilities in metropolitan Chicago, Illinois, USA. The study participants included 27 pati...

In this introduction to the special issue on current thinking in qualitative research and occupational therapy and science, the authors focus on the importance of rigorous qualitative research to inform occupational therapy practice. The authors chosen for this special issue reflect a "second generation of qualitative researchers" who are critical,...

Introduction: Both grip and knee extension strength are often used to characterize overall limb muscle strength. We sought to determine if the measures actually reflect a common construct. Methods: The isometric grip and knee extension strength of 164 healthy men and women (range, 18-85 years) were measured bilaterally using standard procedures....

Validated measurement scales are essential to evaluating clinical outcomes and conducting meaningful and reliable research. The purpose of this article is to present the clinician and researcher with a contemporary 8-stage framework for measurement scale development based on a mixed-methods qualitative and quantitative approach. Core concepts relat...

Content validity of patient-reported outcome measures (PROs) has been a focus of debate since the 2006 publication of the U.S. FDA Draft Guidance for Industry in Patient Reported Outcome Measurement. Under the auspices of the Patient Reported Outcomes Measurement Information System (PROMIS) initiative, a working meeting on content validity was conv...

Given the functional and epidemiological significance of lower extremity strength, portable, low-cost measures of lower extremity strength with robust psychometric properties are needed for clinical practice and research. The purpose of this study was to compare measures of isometric knee extension strength obtained with portable devices with crite...

Clinical measurement. Manual dexterity is an important aspect of motor function across the age span. To identify a single measure of manual dexterity for inclusion in the National Institutes of Health (NIH) Toolbox Assessment of Neurological and Behavioral Function. A total of 340 subjects participated in our study. Two alternatives, Rolyan® 9-Hole...

If measures of muscle strength are to be broadly applied, they should be objective, portable, quick, and reliable. Through this component of the NIH Toolbox study we sought to compare the test-retest reliability of 3 tests of muscle strength that are objective, portable, and quick: the five-repetition sit-to-stand test (FRSTST), hand-grip dynamomet...

To reflect the perspectives of rehabilitation stakeholders in a measure of participation enfranchisement that can be used by people with and without disabilities. Survey. Community settings. We pilot-tested a draft instrument with 326 adults who had sustained stroke, spinal cord injury, traumatic brain injury, or other disabling condition, as well...

Tester strength can limit the forces that can be measured using a hand-held dynamometer (HHD). A solution is to use belt stabilization in conjunction with an HHD. The purposes of this study were to determine if a portable belt-stabilized HHD (BSHHD) setup was capable of measuring a broad range of isometric knee extension torques and whether isometr...

This paper reports the development and evaluation of a perceived cognitive function (pedsPCF) item bank reported by parents of the pediatric US general population. Based on feedback from clinicians, parents, and children, we developed a scale sampling concerns related to children's cognitive functioning. We administered the scale to 1,409 parents o...

To provide a review of contemporary participation measures' conceptual foundations, psychometric properties and linkage to the International Classification of Functioning, Disability and Health (ICF). Major medical databases, including PubMed, Medline, PsychInfo, and CINAHL. Articles that described the psychometric properties of generic measures of...

This article summarizes the recommendations made by participants at the International Symposium on Measurement of Participation in Rehabilitation Research. We draw on presentations by researchers, clinicians, and consumers; a respondent panel; and small group discussions that included symposium faculty and participants. Breakout groups discussion q...

The objective of the study was to examine mental health referrals outcomes among obstetric patients at risk for depression. Fifty-one perinatal women who were offered mental health referrals were queried about their behaviors at 4 steps in the treatment engagement process and factors facilitating or impeding each step. Although 59% of at-risk women...

Although the validity of the sit-to-stand (STS) test as a measure of lower limb strength has been questioned, it is widely used as such among older adults. The purposes of this study were: 1) to describe five-repetition STS test (FRSTST) performance (time) by adolescents and adults and 2) to determine the relationship of isometric knee extension st...

To examine how participation is conceptualized by different rehabilitation stakeholder groups. Qualitative case study design. A total of 148 participants from different stakeholder groups in 2 US states and the District of Columbia. Stakeholders included people with disabilities (n = 63), caregivers (n = 28), rehabilitation professionals (n = 32),...

Outcome measurement is important in documenting the quality and effectiveness of rehabilitation services. Developers of rehabilitation outcome measures must be attuned to the needs of multiple stakeholders in the rehabilitation process as well as trends in healthcare delivery and measurement science. This paper provides a review of challenging issu...

To explore consumers' use and understanding of quality information about postacute rehabilitation facilities. Thematic, semistructured interviews. Two skilled nursing facilities and 2 inpatient rehabilitation facilities in a large Midwestern city. Rehabilitation inpatients (n=17) with stroke, hip fractures, and joint replacements and care partners...

The purpose of this study was to explore women with disabilities' perceptions of their lived experiences in nursing homes. This 16-month ethnography used multiple qualitative methods, including participant observations, thematic qualitative interviews, and focus groups, to examine the perceptions of life in nursing home for 6 women with disabilitie...

Disability studies, a field of critical study that emerged from the disability rights movement, challenges the medical domination in the lives of people with disabilities and has the potential to transform rehabilitation practice. Significant practical and attitudinal barriers exist to changing rehabilitation practice. Using a point-counterpoint fr...

From 1997 to 2003, Illinois was spending approximately 80% of its long-term care budget on nursing homes and institutional care and was facing significant challenges to its long-term care delivery and the need to rebalance toward community-based supports for people with disabilities. A case-based program evaluation was done to analyze Moving Out of...

Disability studies is a field of critical study that emerged from the disability rights movement as a challenge to the medicalization of the lives of people with disabilities. Disability studies, while often critical of medicine and rehabilitation, has the potential to inform and improve practice by making it more responsive and relevant to the lon...

Although participation is an important construct and valued goal, how it is conceptualized, defined and measured varies widely. This qualitative, multi-site study sought to gain an insider perspective from people with disabilities in grounding what participation means, how to characterize it, and the barriers and supports to participation. Sixty-th...

Background/Objective: To report an evidence-based review of participation instruments that have been used in spinal cord injury (SCI) clinical practice and research. Methods: Rehabilitation literature was searched for instruments used by at least 2 independent SCI researchers since 2000. Each instrument was reviewed by 2 committee members. One pers...

Vita. Thesis (Ph. D. in Disability Studies)--University of Illinois at Chicago, 2006. Includes bibliographical references (leaves 206-226).