Disability And Health Journal[JOURNAL]
Sun
200 papers
Assessing unmet need for dental care from the perspective of adults with disabilities: A mixed methods approach.
Diaz MA, Wood EG, Yuan W … +2 more , Gimm G, Kennedy J
Disabil Health J · 2025 Oct · PMID 40189463 · Full text
BACKGROUND: Adults with disabilities face multiple barriers in accessing health care and experience a variety of unmet needs, including dental care. However, few U.S. studies have assessed unmet need for dental care from...
BACKGROUND: Adults with disabilities face multiple barriers in accessing health care and experience a variety of unmet needs, including dental care. However, few U.S. studies have assessed unmet need for dental care from the perspective of adults with disabilities. OBJECTIVE: We sought to assess unmet need for dental care services from the perspective of adults with disabilities using a mixed methods approach. METHODS: Using individual-level data from the 2022 National Survey on Health and Disability, we conducted a descriptive analysis of participant characteristics, unmet need for dental care, and reasons for unmet need. Using content analysis, we analyzed open-ended text responses from the survey. RESULTS: While participants most commonly cited underinsurance as a barrier to services, they also highlighted lack of accommodation, dental anxiety, and difficulty securing appointments as issues resulting in unmet dental care needs. CONCLUSION: This study illustrates not only the rate of unmet need for dental care for adults with disabilities, but also the reasons driving this phenomenon. Future research is needed to delve further into the reasons cited by participants, namely dental anxiety and the perception that dental providers are unwilling to serve disabled people, neither of which has been explored in-depth quantitatively or qualitatively.
Exploring the lived-experience of individuals with a visual impairment regarding their autonomy, using the example of the community pharmacy: A qualitative study.
Merenda T, Rharib S, Delannoy P … +2 more , Denis J, Patris S
Disabil Health J · 2025 Jul · PMID 40175224 · Publisher ↗
BACKGROUND: Visual impairment represents a significant public health concern, affecting a substantial number of individuals on a global scale. It has a profound impact on the daily lives of these individuals, particularl...
BACKGROUND: Visual impairment represents a significant public health concern, affecting a substantial number of individuals on a global scale. It has a profound impact on the daily lives of these individuals, particularly in relation to the administration of their medications and their interactions with community pharmacists. OBJECTIVES: The study aimed to (1) examine perceptions, challenges, and needs of individuals living with a visual impairment when engaging with community pharmacists, and (2) enhance pharmacist-patient communication, as well as ensure more accessible and inclusive healthcare for these individuals. METHODS: Semi-structured interviews were conducted with 19 French-speaking individuals with a visual impairment in Belgium. The participants were recruited on a voluntary basis and an interview guide was developped based on literature review. Interviews were carried out until theoretical data saturation, recorded, transcribed verbatim, and analyzed in a double-blind fashion using thematic and interpretative phenomenological analyses. Data were organized by NVivo software. RESULTS: Two dimensions were explored in the interviews: psychological and pharmaceutical. From a psychological perspective, the experience of individuals with a visual impairment appears to be linked to their family and social context. The relationship they have with their pharmacist is also important, more specifically the relational aspect and knowledge of visual impairment. CONCLUSION: Visual impairment is a complex phenomenon that is influenced by a variety of factors. Consequently, adaptation systems are necessary at all levels of the society to provide individuals with a visual impairment with the best living conditions and care. The various elements identified in this qualitative study provide some interesting insights for developing recommendations.
A qualitative meta-synthesis of the perinatal healthcare experiences of people with disability.
Harkins SE, Hahn AL, Didier M … +4 more , Walsh C, Barcelona V, Melton K, George M
Disabil Health J · 2025 Jul · PMID 40175223 · Full text
BACKGROUND: Significant perinatal health disparities exist between people with and without disability in the United States and Canada. However, less is known about the perinatal healthcare experiences of people with diff...
BACKGROUND: Significant perinatal health disparities exist between people with and without disability in the United States and Canada. However, less is known about the perinatal healthcare experiences of people with different types of disability in those countries. Understanding this experience is crucial for developing tailored interventions to improve perinatal health outcomes. OBJECTIVE: To synthesize qualitative studies describing the perinatal healthcare experiences of people with physical, sensory, or cognitive disability in the United States and Canada. METHODS: We conducted a qualitative meta-synthesis following Sandelowski and Barroso's methods. Four databases and forward and backward citation searching were used to identify relevant studies in March 2024. Studies were appraised based on their reporting of Guba's essential criteria for trustworthy qualitative research. We coded qualitative findings and synthesized results into themes and subthemes. GRADE-CERQual was used to rate the level of confidence in each subtheme. RESULTS: Twenty-one studies describing the perinatal healthcare experiences of 225 people with disability were the basis of this synthesis. Three themes emerged: (1) Pervasive Ableism, (2) An Uninformed and Unaccommodating Experience, and (3) Resilience in the Face of Ableism. CONCLUSIONS: People with different types of disability shared similar perinatal healthcare experiences, including facing stigma, encountering clinicians with limited knowledge of disability and pregnancy, and demonstrating resilience through self-advocacy and support networks. Accessibility barriers and a lack of disability competency among clinicians were specific to each disability type. Future research should prioritize the development of interventions that promote perinatal health equity for people with disability.
Is participation in the Supplemental Nutrition Assistance Program associated with physical food security among people aged 16 to 64 with disabilities in the U.S.?
Brucker DL, Kim HJ, Potvin BE
Disabil Health J · 2025 Jul · PMID 40169348 · Full text
BACKGROUND: The nation's largest nutrition assistance program (Supplemental Nutrition Assistance Program (SNAP)) was designed to improve economic food security. People with disabilities may experience interactions of fun...
BACKGROUND: The nation's largest nutrition assistance program (Supplemental Nutrition Assistance Program (SNAP)) was designed to improve economic food security. People with disabilities may experience interactions of functional limitations with environmental conditions that limit access to food, regardless of income level or nutrition assistance receipt. OBJECTIVE: Test whether participation in SNAP is associated with physical food security (PFS), a new measure that quantifies the extent that individual physical functioning limitations such as limitations in lifting or walking reduce access to food. METHODS: Using data from the 2013-2018 National Health and Nutrition Survey (NHANES), we estimate the proportion of people aged 16 to 64 with disabilities in the U.S. who experience low or very low PFS and use logit regressions to test whether participation in SNAP is associated with level of PFS for working-age people with disabilities. RESULTS: In testing a variety of fully adjusted logit regression models of PFS, including models that included interaction terms of disability and SNAP receipt and models that used alternative specifications of disability, we did not find evidence that SNAP receipt was associated with or served as a moderator of PFS for people with disabilities. CONCLUSIONS: These findings highlight the importance of collaboration among disability, food, and nutrition policy and practice to identify home and community-based ways to improve PFS.
Domains of wheelchair users' socio-emotional experiences: Design insights from a scoping review.
Rasoulivalajoozi M, Cucuzzella C, Farhoudi M
Disabil Health J · 2025 Jul · PMID 40164524 · Publisher ↗
BACKGROUND: Physical accessibility is not the only concern for wheelchair users (WUs); they also face barriers to social presence, such as challenges in social engagement and negative stereotypes. Identifying key domains...
BACKGROUND: Physical accessibility is not the only concern for wheelchair users (WUs); they also face barriers to social presence, such as challenges in social engagement and negative stereotypes. Identifying key domains in the literature that impact their social and emotional experiences is essential to addressing these issues. OBJECTIVE: This scoping review sought to explore the key domains of WUs' socio-emotional experiences, as a foundation for providing design-oriented insights to enhance their social presence. METHODS: A literature search was conducted using the Web of Science, PubMed, Scopus, and PsycINFO databases, along with a manual search of three relevant journals. Articles in English, based on original empirical studies that focused on the socio-emotional experiences of adult WUs (>18), were included. RESULTS: Of the 48 articles included, most were from Canada (n = 11), Sweden (n = 9), the U.S. (n = 7), and the U.K. (n = 6), with limited studies from other countries. Among the six domains explored, Independence & Autonomy (26 %) was the most frequently reported, while Self-Identity & Body Image (9 %) and Social Stigma & Discrimination (5 %) were the least. Three interconnected themes emerged to guide design insights: Theme I - Foundations: Autonomy & Control, Theme II - Connections: Social Participation & Support, and Theme III - Reflection: Self- & Social-Identity. CONCLUSION: While independence and agency are key concerns, little research has focused on perceptual issues like self- and social-identity, often highlighted in the media. This area can be refined by recognizing the crucial role of design in aesthetically shaping WUs' social representation in public settings.
Lived experiences of patients, families and caregivers affected by inherited retinal diseases: A qualitative systematic review.
Ng QX, Tang ASP, Chan KE … +3 more , Chan HW, Howard N, Koh GCH
Disabil Health J · 2025 Jul · PMID 40148154 · Publisher ↗
BACKGROUND: Inherited retinal diseases (IRDs) are a heterogeneous group of genetic disorders, and a leading cause of vision impairment or blindness, affecting millions worldwide. Despite advances in understanding its phe...
BACKGROUND: Inherited retinal diseases (IRDs) are a heterogeneous group of genetic disorders, and a leading cause of vision impairment or blindness, affecting millions worldwide. Despite advances in understanding its phenotype, the physical and psychological impacts of IRDs on patients and their families and caregivers remain underexplored. OBJECTIVE: This review thus aimed to summarize the existing literature in this area. METHODS: Following PRISMA guidelines and using search terms such as "inherited retinal disease", "psychological impact", "social impact", and "qualitative research", a systematic search was conducted across PubMed Central, EMBASE, Scopus, and PsycINFO databases up to February 29, 2024, for qualitative studies on the impact of IRDs. The findings were then synthesized narratively to provide a cohesive interpretation. RESULTS: A total of 20 studies involving 474 participants across six countries (Australia, Belgium, Italy, Sweden, the UK, and the US) were included. Key themes included the significant impact on daily living and independence, work and professional life, coping strategies and resilience, and the emotional burden on families and caregivers. Genetic testing and its implications (reproductive decisions and insurance discrimination) also emerged as an area of concern. IRDs profoundly affect patients and their families and caregivers, influencing daily life, well-being, and societal participation. CONCLUSIONS: Despite the challenges, resilience and adaptability are prominent, and the findings emphasize the need for comprehensive care that includes psychological support, work adjustments and policies that address the needs of this population. Understanding these quality-of-life issues and areas of unmet need is relevant for healthcare providers, policymakers, and researchers globally.
Additive associations of number of chronic health conditions and disabilities with flourishing among adolescents in the U.S.
Zhu X, Liang Y, Haegele JA
Disabil Health J · 2025 Jul · PMID 40140304 · Publisher ↗
BACKGROUND: Flourishing, also known as thriving, has been recognized as an important indicator of behavioral and social well-being in adolescents. While the association of individual chronic health conditions and disabil...
BACKGROUND: Flourishing, also known as thriving, has been recognized as an important indicator of behavioral and social well-being in adolescents. While the association of individual chronic health conditions and disabilities with adolescent flourishing has been explored, the cumulative association of multiple conditions remains underexamined. OBJECTIVE: The purpose of this study was to examine the associations between the number of chronic conditions or disabilities and flourishing among adolescents in the U.S. METHODS: We utilized nationally representative data from the 2019-2020 National Survey of Children's Health (NSCH), using a cross-sectional design to assess flourishing in adolescents aged 12-17 years (n = 29,518). Logistic regression analyses were conducted to evaluate the association of the number of chronic health conditions and disabilities with flourishing. RESULTS: We found that the presence of chronic health conditions and disabilities that adolescents have is negatively associated with the odds of their flourishing. Compared to those with two or more chronic conditions or disabilities, adolescents with no conditions or disabilities had almost four times greater odds of flourishing (aOR = 3.94), and those with one condition or disability had about three times (aOR = 2.97) greater odds. CONCLUSIONS: The odds of flourishing diminish markedly with multiple chronic conditions or disabilities. These findings highlight the critical need for tailored interventions to support adolescents with multiple conditions, enhancing their potential for future health and success.
Health disparities between autistic non-citizen adults and US citizens enrolled in Medicaid: An analysis of Medicaid claims data from 2017-2019.
Song W, Tao S, Grest CV … +3 more , McLean KJ, Mookerjee V, Shea LL
Disabil Health J · 2025 Jul · PMID 40133090 · Publisher ↗
BACKGROUND: This study addresses critical gaps in our understanding of how immigration status intersects with autism related to health outcomes. OBJECTIVE: We aim to quantify physical and mental health disparities betwee...
BACKGROUND: This study addresses critical gaps in our understanding of how immigration status intersects with autism related to health outcomes. OBJECTIVE: We aim to quantify physical and mental health disparities between autistic non-citizen adults and US citizens, among those who were enrolled in the Medicaid program. METHODS: We analyzed 2017-2019 Transformed Medicaid Statistical Information System Analytic Files to identify autistic adults and categorize them into US citizens and non-citizens. Using propensity score matching (PSM) based on demographic and eligibility variables, we created comparable groups for comparative analysis of health conditions. We used modified Poisson regression models with robust standard errors to quantify the differences in mental and physical health outcomes between the groups, adjusted for co-occurring intellectual disabilities. RESULTS: Autistic non-citizens had a 45 % higher prevalence of schizophrenia or other psychotic disorders than autistic citizens, while there were no significant differences in the prevalence of other mental health conditions (e.g., anxiety, depression). Autistic non-citizens also had a higher prevalence of numerous physical conditions (e.g., cancer, diabetes, and kidney disease) than autistic citizens. These patterns were unaffected by adjusting for co-occurring intellectual disabilities. CONCLUSION: Our study highlights the heightened vulnerability of Medicaid-enrolled autistic non-citizens compared to their US citizen counterparts. Our findings indicate the critical need for Medicaid policy enhancements to better serve the unique challenges of autistic non-citizen adults, emphasizing the development of practice guidelines that incorporate cross-cultural and immigrant experiences and a culturally and linguistically competent provider base.
How healthcare organizations provide disability accommodations to promote equitable care: A qualitative study.
Sarmiento CA, Eberle K, Oshita J … +3 more , Feinstein JA, Matlock D, Morris MA
Disabil Health J · 2025 Jul · PMID 40090809 · Publisher ↗
BACKGROUND: Federal laws require healthcare organizations (HCOs) to provide patients' disability accommodations when requested. However, patients' accommodations needs are often unmet, contributing to inequities in healt...
BACKGROUND: Federal laws require healthcare organizations (HCOs) to provide patients' disability accommodations when requested. However, patients' accommodations needs are often unmet, contributing to inequities in healthcare access and outcomes. Little is known about the systems and processes HCOs use to provide accommodations in varied settings. OBJECTIVE: To understand HCOs' systems and processes to provide disability accommodations. METHODS: We conducted qualitative interviews with HCO representatives responsible for disability-related initiatives within their organizations. The interviews elicited participants' current processes for providing disability-related accommodations at their HCOs. We used a team-based approach to thematic analysis, reviewing and summarizing quotations to identify themes and categorize text that exemplified themes. RESULTS: We interviewed 17 participants representing 15 HCOs, and identified four themes related to HCOs providing disability accommodations: 1) Providing accommodations proactively begins with identifying a need, though is often disconnected from the rest of the process; 2) Clinical areas had varied and duplicative processes; 3) Different workflows were created ad hoc for different types of accommodations; and 4) Critical need to educate staff on disability accommodations. Participants drew parallels between disability accommodations and language interpreter services, and also emphasized the importance of providing disability accommodations in a proactive rather than reactive manner. CONCLUSIONS: Health systems struggle with a lack of standardized processes to provide disability accommodations in an efficient, systematic way. While processes should be adapted to local contexts, standardized guidelines for providing accommodations could improve consistency in their delivery, ultimately helping to mitigate health-related disparities in the healthcare setting.
Discretionary exclusion criteria in oncology clinical trials and exclusion of people with psychiatric and cognitive disabilities.
Agaronnik ND, Park ER, Iezzoni LI
Disabil Health J · 2025 Jul · PMID 40089440 · Publisher ↗
BACKGROUND: Clinical trial protocols often allow investigators discretion to determine whether individuals are eligible to participate. OBJECTIVE: To examine the frequency and impact of discretionary eligibility criteria...
BACKGROUND: Clinical trial protocols often allow investigators discretion to determine whether individuals are eligible to participate. OBJECTIVE: To examine the frequency and impact of discretionary eligibility criteria in oncology clinical trials, including whether they specifically target populations with psychiatric or cognitive disabilities for exclusion. METHODS: We identified interventional Phase III and Phase IV oncology clinical trials on ClinicalTrials.gov starting between January 1, 2019, and December 31, 2023. Among these, we included trials with at least one US location, patient populations aged 18-65 or 65+, and a posted study protocol. We used descriptive statistics to capture prevalence of broad investigator discretion in eligibility criteria. We reviewed statements concerning discretionary eligibility criteria for text relating to psychiatric or cognitive disability, and we applied qualitative content analysis techniques to identify themes. RESULTS: Ninety-six trials met inclusion criteria for this study. Of these, 82 (85.4 %) of trials allowed broad investigator discretion to determine eligibility. Content analysis revealed concerns about participants' safety (i.e., posing undue risk to patients), potential difficulties adhering to study protocols (e.g., because of patients' physical, psychiatric, or social condition), perceived ability to obtain informed consent, and completing assessments of patients to determine results of interventions. All trials required informed consent. CONCLUSIONS: Most oncology clinical trials allow investigators broad discretion in determining the eligibility of individuals to participate. These discretionary criteria may particularly target persons with psychiatric or cognitive disabilities, excluding them from participating in clinical trials. Further research should examine whether certain rationales for excluding these populations are appropriate.
Stakeholder perspectives on an adult cerebral palsy community registry: A qualitative study.
Sarmiento CA, Hurvitz E, Cohen J … +1 more , Gannotti M
Disabil Health J · 2025 Jul · PMID 40082167 · Publisher ↗
BACKGROUND: The Cerebral Palsy Research Network (CPRN) community registry has yielded valuable information about changes in function and pain in adults with cerebral palsy (CP) through a patient-reported outcomes registr...
BACKGROUND: The Cerebral Palsy Research Network (CPRN) community registry has yielded valuable information about changes in function and pain in adults with cerebral palsy (CP) through a patient-reported outcomes registry. However, it requires increased enrollment and diversity of participants to produce more generalizable conclusions. OBJECTIVE: To identify stakeholder perspectives about the barriers and facilitators to enrollment in the CPRN Community Registry, strategies to enhance recruitment efforts, and important questions for the registry. METHODS: Qualitative descriptive study using iterative focus groups, followed by inductive thematic analysis. Participants included adults with CP and caregivers, clinical investigators, and community leaders in the CP and disability spaces. Focus groups explored perspectives about motivations for registry participation, barriers and facilitators to participation, and strategies for increasing and enhancing diversity of enrollment. RESULTS: Four focus groups were conducted (20 participants with lived experience; 10 clinical investigators; 9 community leaders). All participants valued the information provided by the registry and felt that ongoing data collection was important. Barriers and related facilitators to participation include benefits of participation, awareness, accessibility, and collaboration with community and clinical partners. Adults with lived experience seek more precisely defined health and function outcomes for adults with CP. CONCLUSIONS: Adults with lived experience, clinical investigators, and community leaders identified barriers and facilitators to participation in a patient-reported registry and important questions. This study revealed that communicating a direct benefit to the participant, improved visibility and accessibility, leveraging collaboration with clinical and community partners, and answering more precise research questions could promote enrollment.
Health literacy in adults with a spinal cord injury or disorder: An updated and expanded systematic review.
Edwards G, Dorstyn D, Oxlad M
Disabil Health J · 2025 Jul · PMID 40074630 · Publisher ↗
BACKGROUND: The importance of health literacy in personal health management is widely recognised in the general population, yet remains poorly understood in some patient groups, including people with spinal cord injury o...
BACKGROUND: The importance of health literacy in personal health management is widely recognised in the general population, yet remains poorly understood in some patient groups, including people with spinal cord injury or disorder (SCI/D). OBJECTIVES: The systematic review had two objectives: (1) to determine the health literacy levels of individuals with SCI/D, and (2) to identify facilitators and barriers to developing health literacy in this group. METHODS: Seven databases (CINAHL, Embase, Emcare, ProQuest, PsycINFO, PubMed, and Web of Science) were searched from inception, with an updated search completed on January 21, 2025. Study quality was evaluated (QualSyst Checklist) and both quantitative and qualitative research narratively summarised by our research aims. RESULTS: Seven quantitative studies and one qualitative study (N = 2471 participants) published from 2005 to 2022 were included. All demonstrated good methodological rigour. Most participants reported having sufficient health literacy. Those with higher health literacy were more likely to have higher education and socio-economic advantage, and to experience better physical and mental health outcomes. Evidence regarding the role of SCI/D variables in developing health literacy capacity was limited. CONCLUSIONS: Health literacy remains an under-researched topic in the SCI/D literature. Further studies are needed to examine how health literacy can impact health behaviours and overall health for this group. This research would also benefit from focusing on personal experiences of health literacy development.
Impact of physical disability on transplant candidacy: A multi-institutional survey of transplant professionals.
Marengo J, Reynolds JM, Bowen L … +2 more , Nabzdyk C, Tanious M
Disabil Health J · 2025 Jul · PMID 40064577 · Publisher ↗
BACKGROUND: While the solid organ transplant evaluation process is designed to function equitably, discriminatory practices remain, resulting in disparities in access for persons with disabilities. Physical function and...
BACKGROUND: While the solid organ transplant evaluation process is designed to function equitably, discriminatory practices remain, resulting in disparities in access for persons with disabilities. Physical function and frailty status are often-cited factors in establishing transplant, despite limited consensus on their assessment and impact. OBJECTIVE: The purpose of this study was to describe how transplant healthcare professionals conceptualize the relationship between physical disability and transplant candidacy. METHODS: A convenience sample of multidisciplinary transplant was solicited to respond to an electronic survey between February and March 2024. RESULTS: Of the 126 professionals contacted, 43 participants responded, yielding a response rate of 34 %. The majority of participants (88 %) held contradictory views of physical disability as it relates to transplant candidacy (p = 0.049). Men were more likely to endorse awareness of bias when evaluating transplant candidates (p = 0.008). Professional discipline was significantly associated with perception of transplant process fairness, impact of bias, and interpretation of quality of life. Iterative thematic analysis revealed a propensity to conflate frailty with physical disability. CONCLUSIONS: Multidisciplinary transplant professionals rarely endorsed overtly ableist sentiments. However, responses highlighted inconsistent, unclear, and at times contradictory conceptions of physical function and physical disability, which may contribute to disparate access to solid organ transplant for individuals with physical disability.
Navigating a hidden disability: Lived experiences and challenges of adults with early stage inherited retinal diseases.
Bakir M, Robertson EG, Chen RT … +8 more , Nguyen BN, McFadyen B, Makrai E, Boyd L, Boyd R, Karandrews S, Ayton LN, Britten-Jones AC
Disabil Health J · 2025 Jul · PMID 40055042 · Publisher ↗
BACKGROUND: Inherited retinal diseases (IRDs) are genetic conditions that typically cause vision loss in working-age adults, representing a unique hidden disability characterised by variable progression rates. OBJECTIVE:...
BACKGROUND: Inherited retinal diseases (IRDs) are genetic conditions that typically cause vision loss in working-age adults, representing a unique hidden disability characterised by variable progression rates. OBJECTIVE: This qualitative study explored the lived experiences of adults in the early stages of IRDs, when vision loss is not outwardly apparent. METHODS: Semi-structured interviews were conducted with 15 individuals with IRDs (mean age 37 ± 17 years) with experiences of progressive vision loss in the last 10 years, exploring participants' experiences and challenges following their IRD diagnosis. Interviews were transcribed verbatim and analysed using thematic analysis method. RESULTS: Analysis yielded five overarching themes: 1) Adapting to the diagnosis: "The journey can be harder than the actual disease", describing challenges in coming to terms with the diagnosis. 2) Daily obstacles: "Accepting what I have, adapting where I can", describing lifestyle and behavioural changes to accommodate for changing vision. 3) A roller-coaster of emotions: "I feel like I'm not in control of the journey", highlighting emotional challenges managing the uncertainty of a variable, progressive disease. 4) Navigating society: "it's invisible, so people forget", capturing interpersonal challenges stemming from a hidden disability. 5) The road ahead: Finding an identity within uncertainty, describing struggles with identity and the future. CONCLUSION: Beyond vision impairment, individuals with IRDs face numerous personal and interpersonal challenges due to the hidden nature of their disability. These challenges are not always immediately apparent, highlighting the importance of raising awareness to assist in developing targeted resources, diagnostic support, and broader societal understanding for hidden disabilities.
Associations between disability status and stressors experienced due to the COVID-19 pandemic among women with a recent live birth, 2020.
Steele-Baser M, Bombard JM, Cassell CH … +8 more , Kortsmit K, Thierry JM, D'Angelo DV, Ellington SR, Salvesen von Essen B, Nguyen AT, Cruz T, Warner L
Disabil Health J · 2025 Jul · PMID 40050144 · Full text
BACKGROUND: Women with disability face more stressors around the time of pregnancy than women without disability. Limited research exists on stressors experienced due to the COVID-19 pandemic among pregnant and postpartu...
BACKGROUND: Women with disability face more stressors around the time of pregnancy than women without disability. Limited research exists on stressors experienced due to the COVID-19 pandemic among pregnant and postpartum women with and without disability. OBJECTIVE: Examine the association between disability status and experiencing certain COVID-19 stressors among women with a recent live birth. METHODS: We analyzed Pregnancy Risk Assessment Monitoring System data from 14 jurisdictions implementing the Disability and Maternal COVID-19 Experiences supplement surveys among women with a live birth from June-December 2020. We examined the prevalence of 12 individual stressors and seven stressor types (any stressor, economic, housing, childcare, food insecurity, mental health, and partner-related), by disability status. For each stressor type, we calculated adjusted prevalence ratios (aPRs) using logistic regression to determine if women with disability were more likely to experience particular stressor types, controlling for respondent age, education, race and ethnicity, marital status, and payment at delivery. RESULTS: Among 5961 respondents, 6.3 % reported a disability. Compared with women without disability, those with disability were more likely to experience any stressor (aPR 1.19, 95 % CI 1.14-1.24), including economic (aPR 1.38, 95 % CI 1.23-1.56), housing (aPR 1.56, 95 % CI 1.09-2.24), childcare (aPR 1.32, 95 % CI 1.11-1.58), food insecurity (aPR 2.18, 95 % CI 1.72-2.78), mental health (aPR 1.49, 95 % CI 1.37-1.62), and partner-related stressors (aPR 2.00, 95 % CI 1.55-2.58). CONCLUSIONS: Findings highlight the challenges experienced by pregnant and postpartum women with disability during public health emergencies and considerations for this population in preparedness planning.
"This is life": An interpretative phenomenological analysis of the lived experience of working-age adults with inherited retinal diseases in Singapore.
Ng QX, Chan HW, Lim RBT … +1 more , Koh GCH
Disabil Health J · 2025 Jul · PMID 40044541 · Publisher ↗
BACKGROUND: Inherited retinal diseases (IRDs) are a heterogeneous group of genetic disorders that progressively impair vision, affecting millions globally. Despite advancements in gene therapy, treatment options remain l...
BACKGROUND: Inherited retinal diseases (IRDs) are a heterogeneous group of genetic disorders that progressively impair vision, affecting millions globally. Despite advancements in gene therapy, treatment options remain limited. The impact of IRDs on patients' psychological and social well-being, however, remains underexplored, especially in Asia. OBJECTIVE: This study investigates the lived experiences of working-age adults in Singapore with IRDs, focusing on how the condition influences their identity, social engagement, and coping mechanisms. METHODS: Following the traditions of Interpretative Phenomenological Analysis (IPA) and informed by the theories of biographical disruption and embodiment, semi-structured interviews were conducted with six adults (aged 21-65 years old) formally diagnosed with IRDs. Participants were recruited through a genetic eye service, and in-depth, one-on-one interviews explored the impact of diagnosis, occupational and social lives, coping strategies, and future outlook. Transcripts were analyzed to identify key experiential themes. RESULTS: Four major themes emerged: (1) Embodied Experience - Navigating a Shifting Relationship with the Body, (2) The Self in Flux - Redefining Identity and Purpose, (3) Social Negotiations - Visibility, Invisibility, and Stigma, and (4) Coping and Resilience - Strategies for Adapting to Uncertainty. Participants described ongoing negotiations of self-identity, perceived social stigma, and internal struggles with acceptance of their conditions, amidst their faltering visual abilities and blending efforts to adapt to progressive vision loss. CONCLUSIONS: Vision loss profoundly affects individuals' bodies, identities and social engagement. The findings emphasize holistic care that incorporates genetic and psychological counseling, along with public education initiatives to reduce stigma and support individuals in maintaining their independence.
Disparities in COVID-19 vaccine coverage and risk factors among individuals with disabilities.
Choi H, Jeon B, Han E
Disabil Health J · 2025 Jul · PMID 40032534 · Publisher ↗
BACKGROUND: Vaccination is a crucial strategy in responding to infectious diseases. We investigated the COVID-19 vaccination coverage among people with disabilities compared to people without disabilities. We identified...
BACKGROUND: Vaccination is a crucial strategy in responding to infectious diseases. We investigated the COVID-19 vaccination coverage among people with disabilities compared to people without disabilities. We identified risk factors of under-vaccination and vulnerable subgroups. OBJECTIVES: To assess COVID-19 vaccination coverage in individuals with disabilities compared with individuals without disabilities and identify risk factors for under-vaccination. METHODS: This cross-sectional study analysed the Korea Disease Control and Prevention Agency-COVID-19-National Health Insurance Service (K-COV-N) cohort, which registered adults with disabilities in 2020 and age and sex-matched individuals without disabilities were included. Vaccination records from the rollout through March 31, 2022 were analysed. Multivariable ordinal logistic regression models were employed. RESULTS: This study included 4,811,866 participants after exclusions. Within the same disability type, individuals with severe disabilities had higher non-vaccination rates than those with mild disabilities. Individuals with pulmonary, brain and cardiac disabilities exhibited higher age-standardized non-vaccination rates (16.7 %, 15.1 % and 12.5 %, respectively). individuals with disabilities were more likely to be under-vaccinated than those without disabilities, with an adjusted odds ratio (aOR) of 1.01 (95 % CI 1.01-1.02). Females consistently exhibited a higher likelihood of non-vaccination in all subgroups. The impact of age differed based on the disability subgroups. The likelihood of under-vaccination was low in employee-insured individuals. CONCLUSIONS: Individuals with disabilities were less likely to receive COVID-19 vaccination compared with those without disabilities and variations were observed by disability types. Tailored strategies considering identified risk factors are required to ensure equal vaccination access for individuals with disabilities in future pandemics.
Explorations of the long term supports coordinator role in managed care for people who are dually eligible for Medicare and Medicaid: A participatory action research-informed study.
The KJ, Sheets M, Acevedo S … +4 more , Almeda-Lopez E, Garr-Colzie N, Hu LA, Heaphy D
Disabil Health J · 2025 Jul · PMID 40024865 · Publisher ↗
BACKGROUND: This article evaluates a role, the Long Term Services and Supports (LTS) Coordinator in a program (called One Care) for dually eligible individuals who have Medicare and Medicaid. OBJECTIVE: Examine the imple...
BACKGROUND: This article evaluates a role, the Long Term Services and Supports (LTS) Coordinator in a program (called One Care) for dually eligible individuals who have Medicare and Medicaid. OBJECTIVE: Examine the implementation of the LTS Coordinator role within the One Care demonstration project and assess its strengths and areas for improvement. METHODS: This study utilizes thematic analysis and is informed by participatory action research. One Care members (n = 27), LTS Coordinators (n = 4), and One Care health plans' staff members (n = 6) were recruited via convenience sampling. Semi-structured interviews were used for data collection. RESULTS: Participants felt supported and understood by their LTS Coordinators, which was helpful in combating isolation and loneliness. LTS Coordinators filled gaps in care related to social determinants of health. However, stakeholders had mixed understandings and definitions of the role of LTS Coordinators. Participants indicated the need for more resources for the LTS Coordinators. CONCLUSIONS: The LTS Coordinator is a unique and innovative role in the One Care duals demonstration. The role of the LTS Coordinator can be strengthened by clarifying the LTS Coordinator role, integrating them within the care team, and improving training and compensation. The LTS Coordinator feature of One Care can serve as a model for other integrated care programs.
Bimodality in life satisfaction: The role of social support in individuals with long COVID.
Chun J, Lee J, Matkin K … +3 more , Richard C, Khan U, Smedema S
Disabil Health J · 2025 Jul · PMID 40011122 · Publisher ↗
BACKGROUND: Long COVID, characterized by persistent symptoms following SARS-CoV-2 infection, poses substantial challenges to individuals' physical and mental health, yet its impact on life satisfaction remains underexplo...
BACKGROUND: Long COVID, characterized by persistent symptoms following SARS-CoV-2 infection, poses substantial challenges to individuals' physical and mental health, yet its impact on life satisfaction remains underexplored. OBJECTIVE: This study aimed to investigate variations in life satisfaction among individuals with Long COVID and identify associated predictors using a mixture model approach. METHODS: Participants (N = 212) were recruited via Prolific and completed surveys assessing life satisfaction, stress, resilience, social support, and hope. A mixture model analysis categorized participants into two clusters based on the relationship between life satisfaction and contributing factors (e.g., social support). RESULTS: Cluster 1 (n = 153) exhibited lower life satisfaction scores, while Cluster 2 (n = 59) reported higher scores. Social support emerged as a significant predictor of life satisfaction in Cluster 2 (p < .001), with correlations indicating its positive association with life satisfaction and negative association with stress levels. However, social support was not significantly associated with life satisfaction in Cluster 1. CONCLUSIONS: The findings highlighted the heterogeneous nature of life satisfaction among individuals with Long COVID. Social support, particularly from family and friends, was identified as a critical factor influencing well-being outcomes. Tailored interventions focusing on enhancing social support networks could mitigate the adverse impacts of Long COVID and improve overall quality of life for individuals with Long COVID.
Sexual violence victimisation among deaf adolescents: A multi-school-based cross-sectional study from Ghana.
Quarshie EN, Fobi D, Honu-Mensah CM … +5 more , Appiah EE, Obeng E, Bokpin IN, Mapaling C, Asante KO
Disabil Health J · 2025 Jul · PMID 39979161 · Publisher ↗
BACKGROUND: Deaf adolescents and other young people with sensory disabilities are at elevated risk of sexual violence victimisation. However, there is scant published evidence on the epidemiology of sexual violence victi...
BACKGROUND: Deaf adolescents and other young people with sensory disabilities are at elevated risk of sexual violence victimisation. However, there is scant published evidence on the epidemiology of sexual violence victimisation among deaf adolescents from African countries, including Ghana. OBJECTIVE: To describe the 12-month prevalence and associated factors of sexual violence victimisation among school-going deaf adolescents in Ghana. METHODS: This is a cross-sectional self-report survey involving a nationally representative sample of 422 school-going deaf adolescents. Multivariable logistic regression was used to examine the sociodemographic, personal-level, family-related, school-based, and interpersonal-level factors associated with sexual violence victimisation. RESULTS: The 12-month prevalence estimate of sexual violence victimisation was 17.4% (95% confidence interval [CI] = 14.0-21.3%). Comparable estimates were found between females (16.6%; 95%CI = 11.3-23.0%) and males (17.9%; 95%CI = 13.6-23.0%). Deaf adolescents from polygynous families, those who did paid work, those having a single-parent caretaker, those whose primary caretakers were unemployed, and those in romantic relationships were at increased odds of sexual violence victimisation. Family-related factors such as parental divorce, and conflict with parents were also associated with increased odds of sexual violence victimisation. No (putative protective) factors were identified to be associated with reduced odds of sexual violence victimisation. CONCLUSIONS: The prevalence estimates and associated factors of sexual violence victimisation among school-going deaf adolescents in the current study are comparable to what is known about in-school hearing adolescents in Ghana. The evidence highlights the need to strengthen preventive efforts against the offence in both deaf and hearing adolescents.
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