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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... more
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 ancillary services provided by people with disabilities to people with disabilities, including peer mentoring, peer health education, and peer health navigation. A growing body of research documents the development, implementation and outcomes of peer support interventions for people with physical disabilities in physical medicine and rehabilitation. The organization, structure and objectives of peer support interventions vary tremendously making it difficult to synthesize findings across studies and establish best practices to support their systematic implementation across the continuum of care. This paper is a call to action for greater conceptual clarity in how peer support interventions are developed, implemented, and evaluated. We propose a 9-part evidence-informed framework delineating both theory-driven and contextual considerations to help strengthen the evidence-base of peer support interventions for people with disabilities in physical medicine and rehabilitation.
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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,... more
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 pose accessibility challenges for some people with disabilities. Accessibility of measurement is important to consider because systematic exclusion of people with disabilities from research can lead to measurement bias and systematic error in derived scores. We describe our approach to analyzing the accessibility of measures in the NCS and describe the work of the Accessibility Domain Team. Finally, we describe a decision process for creating and using accessible health research measures.
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Background: In order to develop health outcomes measures that are relevant and applicable to the general population, it is essential to consider the needs and requirements of special subgroups, such as the young, elderly, disabled, and... more
Background: In order to develop health outcomes measures that are relevant and applicable to the general population, it is essential to consider the needs and requirements of special subgroups, such as the young, elderly, disabled, and people of different ethnic and cultural backgrounds, within that population. Methods: The NIH Toolbox project convened several working groups to address assessment issues for the following subgroups: pediatric, geriatric, cultural, non–English-speaking, and disabled. Each group reviewed all NIH Toolbox instruments in their entirety. Results: Each working group provided recommendations to the scientific study teams regarding instrument content, presentation, and administration. When feasible and appropriate, instruments and administration procedures have been modified in accordance with these recommendations. Conclusion: Health outcome measurement can benefit from expert input regarding assessment considerations for special subgroups. Neurology 2013;80...
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9056 Background: As new cancer therapies are developed, it is important to evaluate their efficacy based not only on survival outcomes but also meaningful patient benefit in terms of symptoms and concerns that are important to patients.... more
9056 Background: As new cancer therapies are developed, it is important to evaluate their efficacy based not only on survival outcomes but also meaningful patient benefit in terms of symptoms and concerns that are important to patients. The purpose of this study of patients undergoing 2nd/3rd line chemotherapy for non-small cell lung cancer (NSCLC) was to characterize pulmonary symptoms and the importance patients place on these symptoms, as a part of assessing the content validity of the Pulmonary Symptom Index (PSI) of the Functional Assessment of Cancer Therapy – Lung (FACT-L). Methods: We conducted semi-structured thematic interviews with 20 stage III/IV NSCLC patients undergoing 2nd or 3rd line treatment. Interviews included open elicitation of NSCLC symptoms and their functional impact, and participant ratings of the relative importance of pulmonary symptoms. Results: Mean age was 62 years (range 30-79); 80% had non-squamous histology, and 30% had co-morbid COPD. While partici...
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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... more
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 Speaker: Amber Angell Additional Authors and Speakers: Alli Ferlin, Christina Papadimitriou, Susan Magasi Contributing Authors: Judy Panko Reis, Tom Wilson, Jennifer Thomas
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Date Presented 4/9/2016 The purpose of this research is to explore the effect of both knowledge translation strategies and transformative curriculum design on the standardized use of the Canadian Occupational Performance Measure and... more
Date Presented 4/9/2016 The purpose of this research is to explore the effect of both knowledge translation strategies and transformative curriculum design on the standardized use of the Canadian Occupational Performance Measure and reported self-efficacy in inpatient stroke rehabilitation. A moderate to large effect size occurred after the education. Primary Author and Speaker: Piper Hansen Contributing Authors: Joy Hammel, Susan Magasi, Jennifer Moore, Allen Heinemann
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Date Presented 4/17/2015 In this mixed-methods study, we identified disparities in breast and cervical cancer among women with disabilities, along with modifiable barriers to screening. By understanding and addressing these barriers,... more
Date Presented 4/17/2015 In this mixed-methods study, we identified disparities in breast and cervical cancer among women with disabilities, along with modifiable barriers to screening. By understanding and addressing these barriers, occupational therapy practitioners can be change agents at the provider and client levels. Research Platform
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ObjectiveThe 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... more
ObjectiveThe 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 trained to deliver structured peer support interventions that can address barriers to care. The purpose of this paper is two-fold. First, it explicates the relational work the peer navigators do with peers in delivering the intervention. Second, it illustrates how our community-based participatory approach empowered peer navigators to share their knowledge to refine the intervention.MethodsClinical coordinator team meeting notes, critical incident documentation reports, peer navigator reflections (n = 20) were analyzed thematically to understand the peer navigators' relational work and intervention refinements. Following Labov's 6-stage ...
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Eliminating cancer-related disparities is a global public health priority. Approximately 40% of cancer survivors experience long-term effects of cancer which can lead to activity limitations and participation restrictions; yet discussions... more
Eliminating cancer-related disparities is a global public health priority. Approximately 40% of cancer survivors experience long-term effects of cancer which can lead to activity limitations and participation restrictions; yet discussions of disability are largely absent from clinical and research cancer health equity agendas. The purpose of this study was to explore how cancer survivors experience and make sense of the long-term disabling effects of cancer and its treatments. In this qualitative study, data were collected via in-depth semi-structured interviews with survivors of breast cancer, head and neck cancer, and sarcoma (n = 30). Data were analyzed thematically using a 2-phase iterative process proceeding from descriptive to conceptual coding. Survivors experienced a wide range of long-term physical, sensory, cognitive, and emotional effects, that intertwined to restrict their participation in self-care, work, leisure, and social roles. While the interaction between impairme...
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Abstract The purpose of this study was to examine the lived experiences of Latinx cancer survivors and their family caregivers during survivorship. Eighteen semi-structured interviews were conducted with a variety of stakeholders... more
Abstract The purpose of this study was to examine the lived experiences of Latinx cancer survivors and their family caregivers during survivorship. Eighteen semi-structured interviews were conducted with a variety of stakeholders including Latinx cancer survivors (n = 8), their family caregivers (n = 5), and cancer care providers (n = 5). Data were analyzed thematically to describe occupational participation. Latinx families lived in political, economic, language, and social contexts that facilitated and hindered their well-being. Survivors simultaneously experienced occupational deprivation and posttraumatic growth. To promote occupational justice, occupational therapy practitioners and researchers are called to partner with Latinx survivors and their families to facilitate skills needed for everyday participation.
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As part of the National Children's Study (NCS) comprehensive and longitudinal assessment of the health status of the whole child, scientific teams were convened to recommend assessment measures for the NCS. This manuscript documents... more
As part of the National Children's Study (NCS) comprehensive and longitudinal assessment of the health status of the whole child, scientific teams were convened to recommend assessment measures for the NCS. This manuscript documents the work of three scientific teams who focused on the motor, sensory, or the physical health aspects of this assessment. Each domain team offered a value proposition for the importance of their domain to the health outcomes of the developing infant and child. Constructs within each domain were identified and measures of these constructs proposed. Where available extant assessments were identified. Those constructs that were in need of revised or new assessment instruments were identified and described. Recommendations also were made for the age when the assessments should take place.
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Objective(s) To investigate the state of the science around availability and appropriate use of accessible medical diagnostic equipment (AMDE) for patients with disabilities (PWD). Data Sources Bibliographic databases PubMed, CINAHL,... more
Objective(s) To investigate the state of the science around availability and appropriate use of accessible medical diagnostic equipment (AMDE) for patients with disabilities (PWD). Data Sources Bibliographic databases PubMed, CINAHL, Embase were searched (January 2000- February 2021). Terms included diagnostic equipment, examination table, weight scale, imaging equipment, mammography, wheelchair, disabled persons, and health services accessibility. Study Selection English-language research of any design, conducted in the US, focused on adults with physical disabilities, and describing/evaluating AMDE was included. Two researchers independently evaluated studies. Initial search yielded 813 results; 29 studies were included. All methods were in accordance with the WHO's guidelines for rapid reviews. Data Extraction Key study characteristics of included articles were extracted by one researcher and reviewed for accuracy by another. The quality of included studies was assessed independently by two researchers using the Mixed Methods Appraisal Tool. Data Synthesis Both quantitative (n=18) and qualitative (n=11) research revealed that PWD identify lack of access to AMDE as a barrier to safe and equitable primary and specialty healthcare. Providers and PWD report that the presence of AMDE doesn't translate into use of equipment by providers. Additionally, Facilities typically rated themselves higher on accessibility surveys than third party auditors. Conclusions Although access to MDE has improved slightly in recent decades, the presence and use of accessible equipment remains infrequent, creating barriers for PWD. Existing studies on AMDE are largely descriptive, establishing the scope of the issue. Future research should focus on evaluating impact, outcomes, and cost in order to facilitate greater adoption of AMDE in accordance with the US Access Board's 2017 standards and ADA. Author(s) Disclosures This rapid review was partially funded by a cooperative agreement with the National Council on Disability.
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Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations. Latinx cancer survivors experience worse physical and mental health during survivorship. This group's occupational participation... more
Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations. Latinx cancer survivors experience worse physical and mental health during survivorship. This group's occupational participation during survivorship is a product of cultural values, environmental influences, and occupational gains and losses. To promote occupational justice, the OT profession is called to deliver culturally tailored care to capitalize on this group's strengths and prepare them for daily participation. Primary Author and Speaker: Ricardo Daniel Ramirez Additional Authors and Speakers: Susan Magasi
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63 Background: Understanding key concerns and symptoms of patients undergoing cancer treatment is important for characterizing drug treatment benefit as well as developing appropriate psychosocial support interventions. The purpose of... more
63 Background: Understanding key concerns and symptoms of patients undergoing cancer treatment is important for characterizing drug treatment benefit as well as developing appropriate psychosocial support interventions. The purpose of this interview study of patients undergoing second and third line therapy for non-small cell lung cancer (NSCLC) was to characterize their physiological, especially pulmonary, symptoms, functional impacts, emotional distress, health-related quality of life (HRQOL), and coping strategies. Methods: Semi-structured thematic interviews with 20 patients in second and third line treatment for advanced NSCLC. Interviews included open elicitation of NSCLC symptoms, their functional impact, and coping strategies. Results: Mean age was 62 years (range 30-79); 80% of patients had non-squamous histology, and 25% had co-morbid COPD. Patients described a range of core symptom experiences, severity, functional impacts, and coping strategies. Shortness of breath (repo...
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To identify factors underlying heart failure hospitalization. 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... more
To identify factors underlying heart failure hospitalization. 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 States. The interview data were analyzed using a 3-step grounded theory-informed process and constant comparative methods. Qualitative data were compared and contrasted with results from the medical record review. Patient nonadherence to the care plan was the most important contributor to hospital admission; however, reasons for nonadherence were complex and multifactorial. The data highlight the importance of patient education for the purposes of condition management, timeliness of care, and effective communication between providers and patients. To improve the consistency and quality of care for patients with heart failure, more effective relationships among patients, providers, and caregivers are needed. Providers must be pragmatic when educating patients and their caregivers about heart failure, its treatment, and its prognosis.
Research Interests: Grounded Theory, Medicine, Heart Failure, Humans, Female, and 15 moreMale, Physicians, Patient Compliance, Caregivers, Middle Aged, Inpatients, Medical Records, Medicine and Health Sciences, Disease Management, Cross Sectional Studies, Medical Record, Mayo Clinic Proceedings, Interviews as topic, Medical and Health Sciences, and Patient readmission
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... more
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 dynamometry (HGD), and belt-stabilized hand-held dynamometry (BSHHD) of knee extension. Three sets of each test were performed- 1 warm-up and 2 maximal. Measures from the maximal tests obtained 4 to 10 days apart were compared. Reliability was described using descriptive statistics, intraclass correlation coefficients (ICCs) and 4 measures of response stability: standard error of measurement (SEM), method error (ME), coefficient of variation of SEM (SEM CV ), and coefficient of variation of variation of ME (ME CV ). The ICCs of all tests were good (≥ 0.853). Measures of response stability showed less variability between test and retest for FRSTST a...
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The aim of this study was to generate reference values and t-scores (1.0-2.5 standard deviations below average) for grip strength for healthy young adults and to examine the utility of t-scores from this group for the identification of... more
The aim of this study was to generate reference values and t-scores (1.0-2.5 standard deviations below average) for grip strength for healthy young adults and to examine the utility of t-scores from this group for the identification of dynapenia in older adults. Our investigation was a population-based, general community secondary analysis of cross-sectional grip strength data utilizing the NIH Toolbox Assessment norming sample. Participants consisted of community-dwelling adults, with age ranges of 20-40 years (n = 558) and 60-85 years (n = 390). The main outcome measure was grip strength using a Jamar plus dynamometer. Maximum grip strengths were consistent over the 20-40-year age group [men 108.0 (SD 22.6) pounds, women 65.8 (SD 14.6) pounds]. Comparison of older group grip strengths to those of the younger reference group revealed (depending on age strata) that 46.2-87.1% of older men and 50.0-82.4% of older women could be designated as dynapenic on the basis of t-scores. The us...
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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,... more
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 Facilitators item banks with the Patient-Reported Outcomes Measurement Information System (PROMIS) Social Health domain and National Institutes of Health Toolbox Emotional Battery Social Relationships domain were computed to evaluate convergent and divergent validity. SETTING Community-dwelling individuals traveled to 3 academic medical centers for testing. PARTICIPANTS Participants (N=558) who had a primary impairment of stroke, spinal cord injury, or traumatic brain injury (mean age, 47.0±16.0y) completed 31 social attitude facilitator and 51 barrier items using a 5-point rating scale. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES Item banks ...
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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... more
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 selected from the NIHTB-CB normative database (N = 312). The main outcome measures were the demographically adjusted NIHTB-CB subtest and composite scores. Individuals with and without SCI performed equivalently on the NIHTB-CB crystallized composite score, suggesting comparable premorbid functioning. Individuals with SCI produced lower scores on the NIHTB-CB fluid composite score by an average of 4.5 T-score points (Cohen's d = 0.50; a medium effect size). As a group, individuals with SCI had the most difficulty on tests of processing speed and executive functions, and some difficulty on a test of episodic memory, although effect sizes were small. These di...
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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... more
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. One-hundred seventy adults (91 Black; 79 White), who participated in a multisite study were included (age: M=56.4; SD=12.6; education: M=13.7; SD=2.5; 50% male; years post-stroke: 1-18; stroke type: 72% ischemic, 28% hemorrhagic). Neurocognitive function was assessed with the NIHTB-CB, using demographically corrected norms. Participants completed measures of socio-demographic characteristics, health literacy, and healthcare use and access. Stroke severity was assessed with the Modified Rankin Scale. An independent samples t test indicated Blacks showed more neurocognitive impairment (NIHTB-CB Fluid Composite T-score: M=37.63; SD=11.67) than Whites (Fluid T-score: M=42.59, SD=11.54; p=.006). Thi...
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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... more
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 individuals and as a group. There has been a rise in the development of instruments designed to measure EFs alone and in relation to participation. Some instrument developers have used the ICF as a theoretical base for instrument development and to substantiate content validity claims. We contend that this is a misapplication of the ICF. There is a need to step back and reexamine the role that environmental theories can play in developing a conceptually driven approach to measuring the interaction between EFs and participation. For this review, we draw on the fields of social, community, and developmental psychology; disability studies; gero...
Research Interests: Psychology, Psychometrics, Social Capital, Social Determinants of Health, Medicine, and 10 moreHumans, Health Status, Clinical Sciences, Social Participation, Public health systems and services research, Environment, Geographic Information Systems, Disabled Persons, Disability Evaluation, and Physical therapy specialty
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. A mixed methods approach included a literature... more
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. A mixed methods approach included a literature review; item classification, selection and writing; cognitive interviews and field testing with participants with spinal cord injury (SCI), traumatic brain injury (TBI) or stroke; and rating scale analysis to evaluate initial psychometric properties. General community. Nine individuals with SCI, TBI or stroke participated in cognitive interviews; 305 community residents with those same conditions participated in field testing. None. Self-report item pool of social attitudes that act as facilitators or barriers to people with disabilities participating in society. An interdisciplinary team of experts classified 710 existing social environment items into content areas and wrote 32 new items. Additional qualitative item review included item refinement and...
Research Interests: Psychology, Psychometrics, Social Support, Medicine, Stroke, and 13 moreHumans, Female, Male, Social Environment, Clinical Sciences, Public health systems and services research, Spinal Cord Injuries, Self report, Environment, Disabled Persons, Socioeconomic Factors, Brain injuries, and Interviews as topic
Research Interests: Clinical Trial, Quality of life, Sexual Health, Community Participation, Medicine, and 15 moreHumans, Clinical research, Spinal Cord, Functional Assessment, Clinical Sciences, Not for profit, Lower limb, Spinal Cord Injuries, Neurosciences, Clinical Diagnosis, Clinical Trials as Topic, Outcome measure, Reliability and validity, Diagnostic Tool, and functional outcome
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Research Interests: Psychology, Assessment, Focus Groups, Qualitative Research, Adolescent, and 15 moreDisability, Activities of Daily Living, Self Efficacy, People with Disabilities, Humans, Female, Male, Social Environment, Social Adjustment, Aged, Middle Aged, Adult, Personal autonomy, Disabled Persons, and Medical and Health Sciences
Research Interests: Rehabilitation, Psychometrics, Traumatic Brain Injury, Focus Groups, Policy, and 15 moreQuality of life, Spinal Cord Injury, Medicine, Stroke, Humans, Social Environment, Clinical Sciences, Questionnaires, Public health systems and services research, Reproducibility of Results, Spinal Cord Injuries, Environment, Disabled Persons, Brain injuries, and Disability Evaluation
OBJECTIVE. The purpose of this study was to explore women with disabilities’ perceptions of their lived experiences in nursing homes. METHOD. This 16-month ethnography used multiple qualitative methods, including participant observations,... more
OBJECTIVE. The purpose of this study was to explore women with disabilities’ perceptions of their lived experiences in nursing homes. METHOD. 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 disabilities who had returned to community living and their significant others (n = 13). RESULTS. Nursing homes were living situations of last resort for women with disabilities. Life in the nursing home was characterized by lost choice, control, and occupational engagement; social isolation; social control; the political economy of the nursing home; and active resistance. DISCUSSION. Occupational therapy practitioners practicing from a social justice paradigm have a responsibility to ensure that client goals to live in the least restrictive environments possible are realized. Implications for long-term-care referral practices, adv...
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Research Interests: Medicine, Activities of Daily Living, ICF, Factor analysis, Humans, and 15 moreDifferential Item Functioning, Mean square error, Female, Confirmatory factor analysis, Male, Exploratory Factor Analysis, Interpersonal Relations, Brain injury, Clinical Sciences, CPI, CFA, Indexation, Functional Disability, Brain injuries, and Disability Evaluation
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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... more
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 impact of abortion regulations on their practice, the perceived financial and emotional impact on their patients and their ability to access abortion. A 22-question survey was developed based on themes identified by a qualitative study (Koenig et al., 2019, Journal of Genetic Counseling, 28, 790-801), and distributed to members of the National Society of Genetic Counselors; data from 113 respondents are analyzed. For analysis, participants were categorized into three groups based on the restrictiveness of their state's abortion legislation (supportive, middle ground, hostile) using the Guttmacher Institute's designation based on the amount of restrictive abortion legislation in their state. Participants reported that legislative gestational age restrictions significantly impact their counseling and coordinating of abortion services. Participants reported emotional and financial burdens that impact their patients seeking abortion; however, those in hostile states were significantly more likely to report a perceived financial or emotional impact on their patients. Participants in hostile states were more likely than those in supportive states to report that many of the addressed legislative and institutional regulations impact patients' ability to access abortion. Abortion regulations limiting the decision-making time frame for patients with a fetal abnormality have a significant impact on the practice of prenatal genetic counseling. Further restrictions may change how genetic counselors choose to counsel their patients about the option of abortion, but also may limit the availability of choices particularly for patients in rural areas, in hostile states, and those without the financial resources to travel or pursue termination at later gestational ages.
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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... more
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 that arise from stakeholders’ perspectives and priorities is critical for promoting collaboration between occupational therapy professionals and disability community partners. Objective: To understand the group dynamics and relational processes of a CPBR team in the context of an intervention development study focused on health management for people with disabilities (PWD). Design: This 9-mo ethnographic study included semistructured interviews and participant observation. Data were analyzed thematically. Setting: Community-based multiagency collaborative. Participants: Nine participants (6 academic team members, 4 of whom were trained as o...
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Research Interests: Psychology and Medicine
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... more
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 critical need for community-directed interventions that ensure individuals with disabilities are able to access the health care services they need and are entitled to. Peer health navigator (PHN) programs have been shown to help people from diverse underserved communities break down barriers to health care. The PHN model has not been systematically adapted to meet the needs of PWD. In this article, we describe the collaborative process of developing Our Peers—Empowerment and Navigational Supports (OP-ENS), an evidence-informed PHN intervention for Medicaid beneficiaries with physical disabilities in Chicago, IL, USA. Our Peers—Empowerment and...
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... more
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 their practice. Qualitative semi‐structured interviews were conducted with 16 prenatal genetic counselors in states with restrictive abortion laws who were recruited from the National Society of Genetic Counselors' online directory. Verbatim transcripts were analyzed thematically, yielding five themes: genetic counselors in this study described (a) how state laws restrict access to abortion; (b) how they navigate state laws and institutional policies regarding abortion; (c) how they tailor their professional practice in the context of state abortion laws; (d) how abortion laws burden patients; and (e) how they engage in forms of advocacy. Participants described the financial and emotional burden placed on their patients by state abortion laws and how the laws influence their patient interactions. As access to abortion becomes more restricted, it is important to be aware of how this will impact genetic counselors and their patients.
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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... more
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 population. This in turn contributes to the perpetuation of implicit and explicit health disparities that are already experienced by this population. Grounded within a qualitative, community-based participatory health research framework, we highlight challenges associated with recruiting and retaining PWD in health research, including a critical analysis of the research enterprise structure, how this disables accessible research practices for PWD, and leads to continued skepticism among PWD regarding the value of participating in research. Finally, we propose solutions to create and maintain a culture of access and inclusion as well as long-term co...
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Background. The International Classification of Functioning, Disability and Health (ICF) can serve as reference for standardized documentation of health in clinical practice. Purpose. This study aims to bridge the gap between the ICF and... more
Background. The International Classification of Functioning, Disability and Health (ICF) can serve as reference for standardized documentation of health in clinical practice. Purpose. This study aims to bridge the gap between the ICF and occupational therapy specific concepts, represented by occupational therapy models and their derived assessments. Method. Occupational therapy assessments in relation to their models were systematically linked to the ICF, and a compatibility analysis was conducted. To strengthen reliability of the linkings, feedback from the respective assessment hosts was obtained. Findings. Linking tables were developed for the Assessment of Motor and Process Skills, the Canadian Occupational Performance Measure, and the Model of Human Occupation Screening Tool. Similarities and differences between the ICF and the three assessments and their associated models show how they differ from and complement each other. Implications. The findings of this study lay the foun...
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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... more
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. Adults with traumatic brain injury, spinal cord injury, or stroke (n = 604) completed the NIHTB-CB and other assessments as part of a multisite study. We provide a descriptive, secondary analysis of test administrator notes to determine use and appropriateness of accommodations. Of the 604 participants, 450 (75%) completed the NIHTB-CB using standard administration procedures, but 137 (22.6%) encountered accessibility challenges that required accommodations. Participants with motor function impairments were most likely to receive at least 1 of 3 kinds of accommodations: (a) use of nonstandard methods of entering responses using standard input devices, (b)...