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  • Publication
    Ecosystems Designed for Change: An Evaluation Framework for Innovators & Leaders
    (University of Kansas Social Innovation Lab, 2024-11-07) Garstka, Teri; Kennedy, Meaghan; Bonnett, Michaela
    This white paper in the Responsive Ecosystems for Change Series presents an evaluation framework to guide practitioners and ecosystem leaders toward a comprehensive approach for measuring change and impact. It discusses methodologies and analyses specifically designed for complex systems change at many levels. This paper walks readers through the framework, concepts, and examples to improve their understanding of how to evaluate a social ecosystem and measure its collective impact at scale.
  • Publication
    Everyday Challenges for Individuals Aging With Vision Impairment: Technology Implications
    (Oxford University Press, 2023-12-20) Remillard, Elena T; Koon, Lyndsie M; Mitzner, Tracy L; Rogers, Wendy A
    Background and Objectives There are growing numbers of older adults with long-term vision impairment who are likely to experience everyday activity challenges from their impairment in conjunction with age-related changes. Technology has potential to support activity engagement. To develop effective technologies and interventions, we need to understand the context of activity challenges and identify unmet support needs. Research Design and Methods The Aging Concerns, Challenges, and Everyday Solution Strategies (ACCESS) study is a mixed-method approach to explore everyday challenges of people aging with long-term disabilities. Participants included 60 adults aging with long-term vision impairment (63% female; M age = 67, SD = 4.6) who completed in-depth, structured interviews exploring the nature of everyday challenges and their unmet support needs for activity engagement. We conducted a content analysis using a deductive and inductive approach to build a detailed coding scheme of challenge codes and subcodes. Results The analyses provided detailed insights about the nature of challenges people aging with vision impairment experience when performing specific instrumental activities of daily living (IADLs) in the context of home maintenance, transportation, shopping/finance, and managing health. Vision-related challenges and participation restrictions were identified for several activities that require reading, navigation, and identification (e.g., shopping, medication management, public transportation). Emergent challenge themes for performing IADLs included personal limitations (e.g., physical, cognitive, financial) and environmental barriers (e.g., accessibility, technology, transportation). Discussion and Implications Contextual examples of IADL challenges among individuals aging with vision impairment highlight opportunities for technology design and innovation to support participation in everyday activities.
  • Publication
    The Relationship Between Community Networks and Population-Level Outcomes
    (2024-06-25) Garstka, Teri A.; Bonnett, Michaela; Kennedy, Meaghan; Fernandez, Jasmine; Harms, Randi
    Social care networks are partnerships of organizations that coordinate, share resources, and refer individuals to services. Resilient communities often have strong provider networks dedicated to solving issues related to equitable access to services and outcomes (Corbie-Smith et al, 2019; DeFosset et al, 2023; Gundacker et al, 2020; Hamer & Mays, 2020; Hardin et al 2020). However, little evidence that collaboration between local health care and non-health care organizations improves health outcomes (Alderwick, et al, 2021). This study utilized a large population of social care to quantify the strength and cohesion of the network as a complex adaptive system and as a key driver of community-level change. We conducted network analysis using service referral interaction data between cross-sector organizations in each network to derive network cohesion metrics. We used a Difference-in-Difference (DiD) method to test the hypothesis: Stronger social care networks positively affect health-related factors compared to weaker networks. We conducted four Generalized Estimating Equations linear regressions using the DiD interaction to test network group as a predictor of changes on community-level Health Factors, Health Behaviors, Clinical Care, and Social/Economic Factors. Results showed a strong COVID Effect and as anticipated, every health factor significantly declined over time. However, network cohesion mattered. The Difference-in-Difference (Group X Time) test was significant for every dependent variable. Highly cohesive networks mitigated the negative effects of COVID. Communities with cohesive networks were protected against steep declines experienced by those with less cohesive social care networks. We conclude that network analysis is better suited to quantifying resilience in a community ecosystem and allows for a better understanding of what influences outcomes at the community-level. This work supports the notion that community resilience is a dynamic process that describes a network of adaptive capacities that impact human society and allow it to adapt after adversity and take advantage of opportunities (Garstka & Kennedy, 2023; Norris et al, 2007). From here, we can identify and test interventions to more effectively enhance community resilience and optimize impact by using a structured ecosystem approach. This is Tech-Enabled Community Resilience.
  • Publication
    Endophenotype trait domains for advancing gene discovery in autism spectrum disorder
    (BMC, 2023-11-22) Mosconi, Matthew W.; Stevens, Cassandra J.; Unruh, Kathryn E.; Shafer, Robin; Elison, Jed T.
    Autism spectrum disorder (ASD) is associated with a diverse range of etiological processes, including both genetic and non-genetic causes. For a plurality of individuals with ASD, it is likely that the primary causes involve multiple common inherited variants that individually account for only small levels of variation in phenotypic outcomes. This genetic landscape creates a major challenge for detecting small but important pathogenic effects associated with ASD. To address similar challenges, separate fields of medicine have identified endophenotypes, or discrete, quantitative traits that reflect genetic likelihood for a particular clinical condition and leveraged the study of these traits to map polygenic mechanisms and advance more personalized therapeutic strategies for complex diseases. Endophenotypes represent a distinct class of biomarkers useful for understanding genetic contributions to psychiatric and developmental disorders because they are embedded within the causal chain between genotype and clinical phenotype, and they are more proximal to the action of the gene(s) than behavioral traits. Despite their demonstrated power for guiding new understanding of complex genetic structures of clinical conditions, few endophenotypes associated with ASD have been identified and integrated into family genetic studies. In this review, we argue that advancing knowledge of the complex pathogenic processes that contribute to ASD can be accelerated by refocusing attention toward identifying endophenotypic traits reflective of inherited mechanisms. This pivot requires renewed emphasis on study designs with measurement of familial co-variation including infant sibling studies, family trio and quad designs, and analysis of monozygotic and dizygotic twin concordance for select trait dimensions. We also emphasize that clarification of endophenotypic traits necessarily will involve integration of transdiagnostic approaches as candidate traits likely reflect liability for multiple clinical conditions and often are agnostic to diagnostic boundaries. Multiple candidate endophenotypes associated with ASD likelihood are described, and we propose a new focus on the analysis of “endophenotype trait domains” (ETDs), or traits measured across multiple levels (e.g., molecular, cellular, neural system, neuropsychological) along the causal pathway from genes to behavior. To inform our central argument for research efforts toward ETD discovery, we first provide a brief review of the concept of endophenotypes and their application to psychiatry. Next, we highlight key criteria for determining the value of candidate endophenotypes, including unique considerations for the study of ASD. Descriptions of different study designs for assessing endophenotypes in ASD research then are offered, including analysis of how select patterns of results may help prioritize candidate traits in future research. We also present multiple candidate ETDs that collectively cover a breadth of clinical phenomena associated with ASD, including social, language/communication, cognitive control, and sensorimotor processes. These ETDs are described because they represent promising targets for gene discovery related to clinical autistic traits, and they serve as models for analysis of separate candidate domains that may inform understanding of inherited etiological processes associated with ASD as well as overlapping neurodevelopmental disorders.
  • Publication
    Clinical and neurocognitive issues associated with Bosch-Boonstra-Schaaf optic atrophy syndrome: A case study
    (Wiley, 2019-11-15) Bojanek, Erin K.; Mosconi, Matthew W.; Guter, Stephen; Betancur, Catalina; Macmillan, Carol; Cook, Edwin H.
    Nuclear receptor subfamily 2 group F member 1 (NR2F1) is an orphan receptor and transcriptional regulator that is involved in neurogenesis, visual processing and development, and cortical patterning. Alterations in NR2F1 cause Bosch-Boonstra-Schaaf optic atrophy syndrome (BBSOAS), a recently described autosomal dominant disorder characterized by intellectual and developmental disabilities and optic atrophy. This study describes the clinical and neurocognitive features of an individual with a de novo nonsense variant in NR2F1 (NM_005654.5:c.82C > T, p.Gln28*), identified by whole exome sequencing. The patient was diagnosed with autism spectrum disorder (ASD) and unlike most previously reported cases, he had no developmental delay, superior verbal abilities (verbal IQ = 141), and high educational attainment despite reduced nonverbal abilities (nonverbal IQ = 63). He had optic nerve hypoplasia with minimal visual impairment as well as mild dysmorphic features. Compared to both age-matched individuals with ASD and healthy controls, the patient showed reductions in manual motor speed, accuracy of saccadic eye movements, and rates of successful behavioral response inhibition. Although the majority of previously reported cases of BBSOAS have been associated with more global intellectual dysfunction, we report on a patient with selective disruption of nonverbal abilities and superior verbal abilities.
  • Publication
    Recruitment and reach in a school-based pediatric obesity intervention trial in rural areas
    (Frontiers Media, 2023-06-01) Forseth, Bethany; Lancaster, Brittany; Olalde, Megan; Befort, Christie A.; Swinburne Romine, Rebecca E.; Dreyer Gillette, Meredith L.; Dean, Kelsey M.; Nelson, Eve-Lynn; Davis, Ann M.
    Introduction: The purpose of this study is to evaluate two recruitment strategies on schools and participant participation rates and representativeness (reach) within a pediatric obesity treatment trial tailored for families who live in rural areas. Methods: Recruitment of schools was evaluated based on their progress toward enrolling participants. Recruitment and reach of participants were evaluated using (1) participation rates and (2) representativeness of demographics and weight status of participants compared to eligible participants (who did not consent and enroll) and all students (regardless of eligibility). School recruitment, as well as participant recruitment and reach, were evaluated across recruitment methods comparing opt-in (i.e., caregivers agreed to allow their child to be screened for eligibility) vs. screen-first (i.e., all children screened for eligibility). Results: Of the 395 schools contacted, 34 schools (8.6%) expressed initial interest; of these, 27 (79%) proceeded to recruit participants, and 18 (53%) ultimately participated in the program. Of schools who initiated recruitment, 75% of schools using the opt-in method and 60% of schools using the screen-first method continued participation and were able to recruit a sufficient number of participants. The average participation rate (number of enrolled individuals divided by those who were eligible) from all 18 schools was 21.6%. This percentage was higher in schools using the screen-first method (average of 29.7%) compared to schools using the opt-in method (13.5%). Study participants were representative of the student population based on sex (female), race (White), and eligibility for free and reduced-price lunch. Study participants had higher body mass index (BMI) metrics (BMI, BMIz, and BMI%) than eligible non-participants. Conclusions: Schools using the opt-in recruitment were more likely to enroll at least 5 families and administer the intervention. However, the participation rate was higher in screen-first schools. The overall study sample was representative of the school demographics.
  • Publication
    High-Intensity Functional Training: Perceived Functional and Psychosocial Health-Related Outcomes from Current Participants with Mobility-Related Disabilities
    (MDPI, 2023-06-12) Koon, Lyndsie M.; Hall, Jean P.; Arnold, Kristen A.; Donnelly, Joseph E.; Heinrich, Katie M.
    Background: People with mobility-related disabilities (MRDs) experience many personal and environmental barriers to engagement in community-based exercise programs. We explored the experiences of adults with MRD who currently participate in high-intensity functional training (HIFT), an inclusive and accessible community-based exercise program. Methods: Thirty-eight participants completed online surveys with open-ended questions, with ten individuals also participating in semi-structured interviews via telephone with project PI. Surveys and interviews were designed to examine changes to perceived health, and the elements of HIFT that promote sustained participation. Results: Thematic analysis revealed themes related to health changes following HIFT participation including improved physical, functional, and psychosocial health outcomes. Other themes emerged within the HIFT environment that promoted adherence for participants such as accessible spaces and equipment, and inclusive HIFT sessions and competitions. Additional themes included participants’ advice for the disability and healthcare communities. The resulting themes are informed by the World Health Organization’s International Classification of Functioning, Disability, and Health. Conclusion: The findings provide initial data on the potential effects of HIFT on multiple dimensions of health outcomes and contribute to the growing literature on community-based programs that are adaptable and inclusive for people with MRD.
  • Publication
    Cost-effectiveness of Lifestyle Africa: an adaptation of the diabetes prevention programme for delivery by community health workers in urban South Africa
    (Taylor and Francis Group, 2023-05-23) Whittington, Melanie D.; Goggin, Kathy; Tsolekile, Lungiswa; Puoane, Thandi; Fox, Andrew T.; Resnicow, Ken; Fleming, Kandace K.; Smyth, Joshua M.; Materia, Frank T.; Hurley, Emily A.; Vitolins, Mara Z.; Lambert, Estelle V.; Levitt, Naomi S.; Catley, Delwyn
    Background Lifestyle Africa is an adapted version of the Diabetes Prevention Program designed for delivery by community health workers to socioeconomically disadvantaged populations in low- and middle-income countries (LMICs). Results from the Lifestyle Africa trial conducted in an under-resourced community in South Africa indicated that the programme had a significant effect on reducing haemoglobin A1c (HbA1c). Objective To estimate the cost of implementation and the cost-effectiveness (in cost per point reduction in HbA1c) of the Lifestyle Africa programme to inform decision-makers of the resources required and the value of this intervention. Methods Interviews were held with project administrators to identify the activities and resources required to implement the intervention. A direct-measure micro-costing approach was used to determine the number of units and unit cost for each resource. The incremental cost per one point improvement in HbA1c was calculated. Results The intervention equated to 71 United States dollars (USD) in implementation costs per participant and a 0.26 improvement in HbA1c per participant. Conclusions Lifestyle Africa reduced HbA1c for relatively little cost and holds promise for addressing chronic disease in LMIC. Decision-makers should consider the comparative clinical effectiveness and cost-effectiveness of this intervention when making resource allocation decisions.
  • Publication
    Short report: The role of oral hypersensitivity in feeding behaviors of young autistic children
    (SAGE Publications, 2023-02-24) Thompson, Kelsey; Wallisch, Anna; Nowell, Sallie; Meredith, Jessica; Boyd, Brian
    Feeding problems are common among autistic children and are linked to negative health consequences. Therefore, understanding feeding problems and factors that influence these behaviors is important for developing supports for children and families. While certain sensory processing patterns are commonly associated with feeding problems, less is known about the link between sensory processing and feeding behaviors in autism, as well as how parent behaviors and feelings during mealtime differ based on child sensory preferences. This research examined two groups of young autistic children who were reported to be picky eaters by their parents: those with and those without oral hypersensitivity. Children with oral hypersensitivity had more difficulty with food acceptance, and their parents reported more negative feelings around feeding their child. However, the two groups of children (oral hypersensitive and not) did not differ in their medical/oral motor symptoms, mealtime behavior, or parent use of strategies at mealtimes. This research supports the need for personalized treatment strategies based on the child’s sensory preferences to support both the child and parent in managing mealtimes.
  • Publication
    Examination of the ADOS-2 Expressive Language Score in Fragile X Syndrome
    (American Association on Intellectual and Developmental Disabilities, 2021-04-28) Fielding-Gebhardt, Heather; Bredin-Oja, Shelley L.; Warren, Steven F.
    The development of an expressive language score for people with autism based on the ADOS-2 was recently reported by Mazurek et al. (2019). The current study examined the construct validity of the ADOS-2 expressive language score (ELS) in a sample of adolescents with fragile X syndrome (n = 45, 10 girls), a neurodevelopmental disorder with high rates of autism symptomology. The ADOS-2 ELS showed strong convergent validity with multiple assessments of expressive language, receptive language, and nonverbal cognition. Divergent validity was demonstrated between the expressive language score and chronological age, symptoms of anxiety/depression, and rule-breaking behaviors. This expressive language score is a promising measure of expressive language ability that can be used in research when other language assessments are unavailable.
  • Publication
    Sexual Responsivity and the Effects of Negative Mood on Sexual Arousal in Hypersexual Men Who Have Sex with Men (MSM)
    (Oxford University Press, 2020-07-08) Janssen, Erick; Prause, Nicole; Romine, Rebecca Swinburne; Raymond, Nancy; MacDonald, Angus, III; Coleman, Eli; Miner, Michael H.
    Background A number of studies have found that hypersexuality is associated with a high propensity for sexual excitation. In comparison, less is known about the relationship between hypersexuality and sexual arousal at the state level. Also, previous research has revealed a relationship between hypersexuality and negative mood. However, the possibility that sexual response might not be as negatively impacted by negative mood in hypersexual individuals has, as yet, not been tested. Aim The purpose of this study was to investigate sexual responsivity and the effects of negative mood on sexual arousal in hypersexual men who have sex with men (MSM). Methods A total of 211 MSM were assigned to a hypersexuality (N = 81) or a control (N = 130) group using an interview patterned with a semi-structured Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders format. Participants filled out questionnaires and were shown neutral, sexual, and anxiety- and sadness-inducing films. Outcomes Changes in penile circumference and self-reported sexual arousal were the primary outcomes analyzed in this study. Results Controlling for age and HIV status, no differences were found in genital response between hypersexual and non-hypersexual men. Also, the 2 groups did not differ in subjective sexual arousal. Moreover, no effects of negative mood were found. Time series clustering analyses revealed 3 groups—low responders and slow and fast high responders. Sexual excitation, but not sexual compulsivity or pornography use, predicted cluster membership. Clinical Translation Hypersexual MSM may benefit more from an exploration of motivational and behavioral, as compared to psychophysiological, mechanisms underlying possible links between (negative) mood and sexual behavior. Strengths & Limitations Strengths of the study include its sample size, making it one of the larger psychophysiological sex studies; the use of clinical interviews for group assignment; the inclusion of genital response measures; and the application of time series clustering to examine differences among participants. Limitations include possible sample heterogeneity and the reliance on researcher-selected stimuli. Conclusion Given the lack of any effects of negative mood on sexual response in hypersexual MSM, future studies could explore in more depth possible motivational and behavioral effects, including, for example, the impact of negative mood on the tendency to seek out sex as a form of distraction or for validation or emotional support.
  • Publication
    Maternal well-being and family adaptation during COVID-19 in fragile X syndrome
    (Frontiers Media, 2022-08-23) Fielding-Gebhardt, Heather; Swinburne Romine, Rebecca; Bredin-Oja, Shelley; Brady, Nancy; Warren, Steven F.
    Mothers of children with fragile X syndrome are at increased risk of experiencing anxiety and depression due to potential genetic risk and to stress associated with parenting a child with significant behavioral, emotional, and educational support needs. During the initial shutdown and subsequent restrictions of the COVID-19 pandemic, mothers of children with fragile X reported experiencing elevated levels of anxiety and depression relative to their usual levels of well-being. Many indicated that the negative consequences of exposure to COVID-19 and related stressors, as well as the impacts of the pandemic on their family, directly affected their anxiety and depression. Mothers reported on specific sources of distress as well as potential sources of resilience and positive adaptation that occurred during the first year of the COVID-19 pandemic.
  • Publication
    Effectiveness of Responsivity Intervention Strategies on Prelinguistic and Language Outcomes for Children with Autism Spectrum Disorder: A Systematic Review and Meta-Analysis of Group and Single Case Studies
    (Springer, 2021-11-15) McDaniel, Jena; Brady, Nancy C.; Warren, Steven F.
    We conducted a systematic review to identify randomized controlled trials (RCTs) and single case research design (SCRD) studies of children with autism spectrum disorder that evaluate the effectiveness of responsivity intervention techniques for improving prelinguistic and/or language outcomes. Mean effect sizes were moderate and large for RCTs (33 studies; g = 0.36, 95% CI [0.21, 0.51]) and SCRD (34 studies; between-case standardized mean difference = 1.20, 95% CI [0.87, 1.54]) studies, respectively. Visual analysis (37 studies) revealed strong evidence of a functional relation for 45% of the opportunities and no evidence for 53%. Analyses of moderator effects and study quality are presented. Findings provide support for responsivity intervention strategies with more robust support for context-bound outcomes than more generalized outcomes.
  • Publication
    Feasibility and Comparative Effectiveness for the Delivery of the National Diabetes Prevention Program through Cooperative Extension in Rural Communities
    (MDPI, 2022-08-11) Gorczyca, Anna M.; Washburn, Richard A.; Smith, Patricia; Montgomery, Robert N.; Koon, Lyndsie M.; Hastert, Mary; Suire, Kameron B.; Donnelly, Joseph E.
    The U.S. Cooperative Extension Service (CE) has potential to deliver the National Diabetes Prevention Program (NDPP) to rural residents with prediabetes. However, the CE remains underutilized for the delivery of NDPP. We compared the feasibility/effectiveness of the NDPP (0–6 mos.) delivered by CE personnel to rural residents with prediabetes using Zoom® (CE-Zoom®) or by our research staff using Facebook® (FB). Adults (n = 31, age ~55 years) were enrolled (CE-Zoom® n = 16, FB n = 15). Attendance did not differ significantly between groups (CE Zoom® = 69%, FB = 83%, p = 0.15). Participant retention was similar in the CE Zoom® (88%) and FB groups (87%). CE-Zoom® and FB® groups provided weekly, self-monitoring data for 83% and 84% of the 24 potential weeks, respectively. Six-month weight loss was not different between groups (CE-Zoom® = −5.99 ± 8.0 kg, −5.4%, FB = −1.68 ± 3.3 kg, −1.6% p = 0.13). Participants achieving ≥5% weight loss was greater in the CE-Zoom® (44%) compared with the FB group (7%, p = 0.04). Participants achieving the NDPP program goal for physical activity (≥150 min/week) did not differ (CE-Zoom® = 75%, FB = 67%, p = 0.91). This pilot trial demonstrated the potential feasibility and effectiveness of the NDPP delivered by CE personnel in a group remote format (Zoom®) to adults with prediabetes living in rural areas.
  • Publication
    Examining the effects of the COVID-19 pandemic on community engagement for people with mobility disabilities
    (Elsevier, 2022-01) Koon, Lyndsie M.; Greiman, Lillie; Schulz, Jonathan A.; Goddard, Kelsey S.; Nzuki, Isaac M.; Hall, Jean P.
    Background The COVID-19 pandemic and subsequent mandates upended community participation in the United States. People with disabilities were often more vulnerable to the adverse effects of the pandemic. Some areas of community participation affected for this population include employment, access to transportation, and social engagement and connection to others. Objectives The purpose of this study was to explore the effects of the COVID-19 pandemic for people with mobility disabilities across a variety of topics related to community engagement including social interactions with family and friends, and access to caregivers, groceries, transportation, and employment. Methods A survey was administered to participants with mobility disabilities (N = 39). Participants were asked to elaborate on topic areas that they identified as being affected by the COVID-19 pandemic. Data analysis included descriptive statistics and a content analysis in search of themes from open-ended responses. Results Results indicate that access to family and friends was the most negatively affected topic related to participation, followed by access to food and groceries, transportation, employment, living independently, caring for others, and participating in the community in general. In response to these pandemic-related challenges, participants reported utilizing technology to connect with others and to get essential items delivered. Conclusions Findings from this rapid research emphasize the need for emergency preparedness strategies, accessible and reliable resources related to technology use (e.g., Internet), and continued access to services for people with disabilities to maintain various aspects of community participation throughout the COVID-19 pandemic and in the future.
  • Publication
    Effects of a consumer driven home modification intervention on community participation for people with mobility disabilities
    (Elsevier, 2022-01) Greiman, Lillie; Ravesloot, Craig; Goddard, Kelsey S.; Ward, Bryce
    Background Community participation has become a key outcome measure for people with disabilities. This has resulted in a shift in researchers focus from the individual to the environment. However, research has focused primarily on participation barriers in the community with limited research examining the role of the home environment. For people with mobility disabilities the home environment is the starting place for community participation and research is needed to understand the relationship between the home and participation outcomes. Objective This study explores the effects of a consumer-driven home modification intervention on community participation for people with mobility disabilities. Methods We conducted a randomized control trial (from June 2017–April 2019) of the effects of a consumer-directed home modification intervention on community participation. The intervention, the Home Usability Program, was implemented with consumers at two different Centers for Independent Living (N = 195) and included a self-assessment of their home environment and implementation of a home usability change. Results The Home Usability program positively affected the community participation of people with mobility disabilities. Overall, intervention participants reported a 39.5% (p < .05) increase in social and recreational activities immediately following the intervention relative to the control group after controlling for health status and month when outcome data were collected. Six months after the intervention, this effect returned to baseline. Conclusions Community-based, consumer-driven home modification programs show promise for improving community participation outcomes among people with disabilities, however, more research is needed to understand why results did not persist.
  • Publication
    A usable home: A qualitative investigation of the relationship between home usability and community participation for people with disabilities
    (Elsevier, 2022-01) Greiman, Lillie; Koon, Lyndsie; Schulz, Johnathan A.; Nary, Dot
    Background People with mobility disabilities frequently have unmet needs in their home environment, which can lead to difficulties completing daily living activities. Therefore, it is important that homes are not just accessible, but rather useable, meaning that the home complements an individual's functional, social, and psychological needs. Although previous research has shown the importance of home usability for people with mobility disabilities on health outcomes, this research explores the relationship between home usability and community participation both inside and outside the home. Objective The objective of this study was to understand the perception of people with mobility disabilities on the relationship between community participation and home usability. Method Twelve participants completed in-person semi-structured interviews to answer questions related to home usability and community participation. A content analysis was used to identify emergent themes. Results Results indicate that personal, social, and environment factors influence home usability and one's ability to participate in the community. Conclusion Home usability is a complex concept that is intertwined with a person's ability to participate in their community. Useable homes can facilitate community participation, both inside and outside the home. In fact, home usability is a critical component of community participation, as homes are not only located in the community but are sites from which people access community. Further research is needed to understand the significance of this interaction and the impact of changing home usability on one's ability to participate in the community.
  • Publication
    Transportation challenges for persons aging with mobility disability: Qualitative insights and policy implications
    (Elsevier, 2022-01) Remillard, Elena T.; Campbell, Margaret L.; Koon, Lyndsie M.; Rogers, Wendy A.
    Background Persons aging with mobility disability (PAwMD) experience transportation barriers, which can hinder their ability to fully participate in society. Despite a vast infrastructure of federal laws and programs designed to ensure access to transportation, PAwMD remain a transportation-disadvantaged population. Objectives This paper presents detailed insights on transportation challenges experienced by PAwMD along with recent Federal programmatic initiatives designed to enhance access and mobility for transportation for older adults and people with disabilities. To identify policy gaps and opportunities to improve transportation services, we compared individual-level challenges from PAwMD to national survey data about barriers associated with delivering transportation services at state and local levels. Methods To assess individual-level transportation challenges, we conducted in-depth, structured interviews with sixty older adult participants with self-identified mobility disabilities for at least 10 years. We also conducted a content analysis of end-user transportation challenges and agency-level transportation coordination barriers to identify correspondences. Results Participants reported challenges utilizing public and private modes of transportation, related to availability; accessibility; safety; advanced planning; as well as societal attitudes. Barriers to the availability, delivery, and coordination of access and mobility services are linked directly or indirectly to the PAwMD reports of experiencing a shortage of accessible transportation options. Conclusions Findings highlight the complexity of federal transportation policies and programmatic initiatives designed to support older adults and people with disabilities, which contribute to implementation barriers and transportation challenges. Results highlight the importance of integrating end-user and state and local provider input into transportation policy development and program implementation.
  • Publication
    Assessing factors associated with social connectedness in adults with mobility disabilities
    (Elsevier, 2022-01) Hall, Jean P.; Kurth, Noelle K.; Goddard, Kelsey S.
    Background People with mobility disabilities are likely to report limitations in community participation and social connectedness for a variety of reasons, including inaccessible physical environments, health issues, transportation barriers, and limited financial resources. Improving social connectedness is a public health issue and research shows its relation to overall health and life expectancy. Objective The purpose of this study was to (1) assess social activity, isolation, and loneliness among people with mobility disabilities compared to those with non-mobility disabilities and (2) understand factors associated with social connectedness among people with mobility disabilities. Methods An observational, cross-sectional analysis was conducted using data from Wave 2 of the National Survey on Health and Disability (NSHD) to test for differences between adults age 18–64 with mobility disabilities (n = 621) and those with other disabilities (n = 1535), in addition to tests within the mobility disability group. Results Adults with mobility disabilities were less likely than respondents from other disability groups to report feeling isolated (30.2% versus 35.2%), but these groups did not differ on measures of social activity or loneliness. Within the mobility disability group, being unemployed and in fair or poor health were predictive of greater loneliness, more isolation, and less satisfaction with social activity. Conclusions Social connectedness is an important public health issue. This research helps to inform service providers and medical professionals about the personal factors affecting social connectedness among people with mobility disabilities.
  • Publication
    Dimensions of community participation
    (Elsevier, 2022-01) Ipsen, Catherine; Hall, Jean P.