Disability And Health Journal[JOURNAL]
Sun
200 papers
Use of the International Classification of Functioning, Disability and Health (ICF) in integrated care for people with disabilities: A scoping review using the SELFIE framework.
Kim HJ, Choi B, Choi E … +5 more , Kim H, Jang SN, Lim JY, Bulkeley K, Smith-Merry J
Disabil Health J · 2025 Oct · PMID 40399189 · Publisher ↗
BACKGROUND: Integrated care addresses system fragmentation, especially for people with disabilities who require support across multiple domains. Most models focus on healthcare, overlooking social and environmental facto...
BACKGROUND: Integrated care addresses system fragmentation, especially for people with disabilities who require support across multiple domains. Most models focus on healthcare, overlooking social and environmental factors that hinder health management for people with disabilities. The International Classification of Functioning, Disability and Health (ICF)'s biopsychosocial approach integrates these broader factors, but its application in integrated care remains underexplored. OBJECTIVE: This scoping review aimed to explore the application of the ICF in research on integrated care, informed by the SELFIE framework, within the context of disability. METHODS: Following Joanna Briggs Institute's guidance and the PRISMA extension for scoping reviews, seven databases were searched from January 2011 to September 2023. Independent screening, selection, and data extraction were performed, with key findings related to integrated care identified deductively using the SELFIE framework. RESULTS: Twenty-six studies were included. These focused on populations with visual impairments, hearing loss, intellectual or developmental disabilities, spinal cord injuries, brain injuries, physical and learning disabilities, psychological impairment, and wheelchair users. Most studies applied the ICF as a conceptual framework rather than a coding system. Key elements of integrated care, such as holistic assessment, service delivery, leadership, governance, and workforce, were emphasized, while components like financing, technology, and research received limited attention. CONCLUSIONS: Traditional integrated care models, focusing on disease management, fall short for people with disabilities, who have diverse, often cross-system needs and social barriers. This review highlights the importance of integrating the context of disability, with the ICF's biopsychosocial model playing a crucial role in addressing environmental factors impacting body functions, activities, and participation.
Cancer inequalities experienced by people with disability: a systematic review.
Yang Y, Afshar N, Butchart J … +4 more , Sully A, Bergin RJ, Kavanagh A, Disney G
Disabil Health J · 2025 Oct · PMID 40399188 · Publisher ↗
BACKGROUND: People with disability experience worse cancer outcomes than people without disability. One potential pathway is through low screening participation leading to delayed cancer diagnosis and late disease presen...
BACKGROUND: People with disability experience worse cancer outcomes than people without disability. One potential pathway is through low screening participation leading to delayed cancer diagnosis and late disease presentation. OBJECTIVE: To summarise and evaluate evidence quantifying disability-related inequalities in (1) cancer mortality, (2) fatality among cancer patients; and for cervical, breast, colorectal and lung cancers: (3) screening participation and (4) stage at diagnosis. METHODS: We searched MEDLINE, Embase, PsycInfo and Scopus up to November 2023 for studies that quantified disability-related inequalities in the four outcomes. Studies were evaluated using the Risk Of Bias In Non-randomized Studies - of Exposures tool. RESULTS: We found 73 eligible articles globally. People with disability had higher cancer mortality compared to those without. This inequality was most pronounced among people with intellectual disability. Evidence showed substantially higher fatality among cancer patients with disability compared to those without consistently across disability groups and cancer types. Screening uptake for breast, cervical and colorectal cancers was consistently lower for people with various disability types in multiple countries. Evidence regarding inequalities in stage at diagnosis for people with disability was limited and inconsistent. The main methodological challenges for future research are: complexity in defining disability, underestimation of inequalities due to over-adjustment of mediating factors, under-representation of people with severe disability in data, and reporting inequalities on relative scales only. CONCLUSIONS: Existing evidence reinforces the need for high-quality cancer inequality research for this population, and a multi-pronged, inclusive approach to prioritise people with disability in the whole cancer control pathway.
New approaches to categorising childhood disability: an international comparative analysis of the UNICEF/Washington Group child functioning module.
Tramontano C, Barbaranelli C, Carroll J … +4 more , Deluca M, Enderby J, Groce N, Mont D
Disabil Health J · 2025 Oct · PMID 40393816 · Publisher ↗
BACKGROUND: The Child Functioning Module (CFM) assesses children's functional difficulties in multiple domains (i.e., sensory, physical, communication, cognitive, psychosocial, and emotional functioning). Cut-off points...
BACKGROUND: The Child Functioning Module (CFM) assesses children's functional difficulties in multiple domains (i.e., sensory, physical, communication, cognitive, psychosocial, and emotional functioning). Cut-off points are defined to identify children with disabilities, for use in international monitoring activities. While appropriate for many uses, the recommended cut-offs limit representation of the patterns of multiple co-occurring difficulties. OBJECTIVE: This paper proposes a new analytical approach that expands the identification of multiple co-occurring difficulties and tests it, using data from the 6th round of UNICEF-supported MICS in seven African countries. METHODS: In each country we implemented: a) Confirmatory Factor Analysis (CFA), to examine the possibility of identifying theoretical functional domains; b) Latent Profile Analysis (LPA) on the functional domains factorial scores to explore whether it was possible to identify groups characterised by specific disability profiles. RESULTS: The posited 6-factor CFA model resulted in adequate goodness of fit across countries. The factorial correlations suggest the co-occurrence of difficulties across domains, except for the emotional functioning factor, which was found to be largely independent. The LPA identified six disability profiles - with a striking degree of replication, both in their nature and frequency - across countries. CONCLUSION: Findings highlights the value and potential of an alternative approach to analyse CFM data to examine and understand co-occurrences of difficulties which a) provides policymakers with key information to tailor interventions to the specific needs of children with disabilities; b) has important implications for models of developmental disabilities, global health planning and resource allocation.
Unmet educational accommodation needs and mental health outcomes in adults with disabilities: A machine learning approach.
Christ BR, Adams L, Ertman B … +1 more , Perrin PB
Disabil Health J · 2025 Oct · PMID 40379558 · Publisher ↗
BACKGROUND: No research has yet determined exactly what accommodation needs are unmet for disabled students and how those needs being unmet predict psychosocial outcomes many years later. OBJECTIVE: To address this resea...
BACKGROUND: No research has yet determined exactly what accommodation needs are unmet for disabled students and how those needs being unmet predict psychosocial outcomes many years later. OBJECTIVE: To address this research gap, we seek to explore the potentially long-term associations of unmet educational accommodation needs and demographic characteristics with the mental health of adults with disabilities (n = 409). METHODS: To explore these associations, we use modern the machine learning technique of Random Forest feature importance. RESULTS: While 52.3 % of the sample reported having had one or more unmet accommodation needs while going to school, 57.2 % displayed current clinically elevated symptoms of depression and 48.4 % clinically elevated symptoms of anxiety. The machine learning approaches had 65.9 % and 60.0 % accuracy in correctly classifying clinically elevated depression and anxiety symptoms, respectively. For the models predicting clinically elevated depression symptoms using mean decrease in impurity (MDI) and permutation importance, unmet accommodation needs ranked fifth and fourth, respectively, in feature importance after age, disability severity, high school GPA, and individual income (for MDI). For the MDI model predicting clinically elevated anxiety symptoms, unmet academic accommodation ranked third in feature importance behind disability severity and age, while for permutation importance, unmet academic accommodation need ranked fourth behind age, urbanicity, and disability severity. CONCLUSION: Unmet academic accommodations may result in reduced psychological adjustment and quality of life potentially many years into adulthood.
Inclusive Mobility: Dismantling transportation injustice at the intersection of race and disability.
Twardzik E, Desjardins MR, Curriero FC … +4 more , Swenor BK, Jackson JW, Schrack JA, Pollack Porter KM
Disabil Health J · 2025 Oct · PMID 40379557 · Full text
Transportation impacts population health. Historical trauma, structural inequities, and institutional discrimination have created transportation injustice. Transportation injustice is a product of systemic racism and abl...
Transportation impacts population health. Historical trauma, structural inequities, and institutional discrimination have created transportation injustice. Transportation injustice is a product of systemic racism and ableism which perpetuates inequities, discrimination, and exclusion. However, systemic racism and ableism can compound injustice given one's social identities. In aligning with the principles of mobility justice and Crip Mobility Justice, this paper asserts that an intersectional lens is needed to dismantle transportation injustice and create a sustainable transportation system rooted in health equity. Specifically, social identities do not exist independent of each other, creating a complex convergence of oppression in transportation access. To support this viewpoint, we: (1) describe transportation history among two overlapping historically marginalized populations in the United States, Black people and people with disabilities, (2) articulate the impact transportation injustice has had on public health, and (3) advocate for an intersectional lens to dismantle unjust systems, policies, and structures.
Measuring nonmedical, person-centered outcomes for home and community-based service participants: Selecting and defining concepts.
Karon SL, Tennety N, Schram BM … +3 more , Lutzky S, Heinemann A, Deutsch A
Disabil Health J · 2025 Jul · PMID 40368724 · Publisher ↗
BACKGROUND: Quality measures can monitor whether home- and community-based services (HCBS) are delivered effectively and support the outcomes desired by persons served. Nonmedical, person-centered quality measures comple...
BACKGROUND: Quality measures can monitor whether home- and community-based services (HCBS) are delivered effectively and support the outcomes desired by persons served. Nonmedical, person-centered quality measures complement Medicaid's HCBS Quality Measure Set. OBJECTIVES: (1) Determine the aspects of quality most important to HCBS recipients, (2) identify aspects of quality not included in quality outcome instruments, and (3) select and define aspects for new quality outcome measures. METHODS: A Participant Council representing HCBS recipients identified aspects of quality important to them. We reviewed person-centered instruments to identify gaps in coverage of concepts related to the National Quality Forum's HCBS quality domains of choice and control, community inclusion, and holistic health and function. Focusing on concepts prioritized by the Participant Council, we identified gaps in current instruments defined as: (1) no instrument addresses the concept; (2) measures not person-centered; (3) measures not outcome-focused; or (4) measures lack evidence of adequate reliability and validity across HCBS populations. RESULTS: We defined 18 concepts for which adequate measures are lacking and selected nine for further development, including choice and control over (1) living arrangement, (2) how time is spent, (3) money, (4) important relationships, (5) personal expression (6) food and nutrition, and (7) healthcare and health; as well as (8) dignity of risk; and (9) community engagement. CONCLUSIONS: Despite the existence of many HCBS instruments, there remains a need for nonmedical, person-centered concepts to complement Medicaid's HCBS Quality Measure Set. Next steps are to develop and test items that measure these nine concepts.
Community inclusion, participation and support for people with disabilities in Zambia: a qualitative study.
Scherer N, Chabaputa R, Chansa-Kabali T … +4 more , Nseibo K, McKenzie J, Banda-Chalwe M, Smythe T
Disabil Health J · 2025 Oct · PMID 40340150 · Publisher ↗
BACKGROUND: Recent reports, including recommendations from the United Nations Committee on the Rights of Persons with Disabilities, have highlighted failings in disability inclusion in Zambia. A recent scoping review ide...
BACKGROUND: Recent reports, including recommendations from the United Nations Committee on the Rights of Persons with Disabilities, have highlighted failings in disability inclusion in Zambia. A recent scoping review identified need for up-to-date evidence to inform disability-inclusive policy and practice. OBJECTIVE: To generate new evidence on community inclusion, participation and support for people with disabilities in Zambia. METHODS: In-depth interviews were held with 36 participants, including 16 adults with disabilities, 16 caregivers of a child with disabilities, and four key informants from government and civil society. Participants were recruited from three districts in Lusaka Province - Lusaka, Chongwe and Kafue. Participants were purposively sampled to maximise variation by sex, age, impairment type, district and locality (rural, urban, peri-urban). Data collection was completed in November 2022. RESULTS: Key themes from the study identified stigma and discrimination towards people with disabilities, the exclusion of people with disabilities from community life, limited available support and inadequate government action on disability inclusion. There were examples of positive action on disability support, such as the Social Cash Transfer, but implementation needed improvement. Disability-awareness campaigns are widely needed across government and communities, as is funding for organisations such as the Zambia Agency For Persons With Disabilities. CONCLUSIONS: Action is needed to improve disability inclusion and implementation of the United Nations Convention on the Rights of Persons with Disabilities in Zambia. This includes appropriate funding, capacity-development and meaningful engagement with people with disabilities and their representative organisations.
Disability and unmet need for health care in Canada: Findings from the Canadian Community Health Survey.
Pucchio AMR, Stranges S, Ali S
Disabil Health J · 2025 Oct · PMID 40340149 · Publisher ↗
BACKGROUND: People with disabilities may experience disparities in access, quality, and outcomes of care compared to those without disabilities. However, there is limited Canadian evidence on the level of unmet need for...
BACKGROUND: People with disabilities may experience disparities in access, quality, and outcomes of care compared to those without disabilities. However, there is limited Canadian evidence on the level of unmet need for care in this population. OBJECTIVE: This study investigated the level of unmet health needs in the Canadian population, with and without disabilities, as well as the factors associated with unmet needs, using a nationally representative survey. METHODS: This cross-sectional study used data from the Canadian Community Health Survey (n = 60,995) to examine self-reported unmet need for health care in the last 12 months. Multivariable logistic regression models were used to evaluate the association between unmet needs, disability status, sociodemographic characteristics, and having a regular primary care provider. RESULTS: Individuals with a disability were over four times more likely to report unmet health care needs than those without a disability, after adjusting for sociodemographic factors. The most common reason for unmet needs was poor availability of care, including long wait times and gaps in regional care. Having a regular care provider significantly reduced the likelihood of having unmet health care needs; however, disability status remained an independent determinant of unmet need. CONCLUSIONS: The findings highlight the need for targeted policy initiatives to reduce health care access disparities among individuals with disabilities. Improving the availability and timely provision of care that is responsive to the specific needs of this population may help address unmet needs.
Canadian children and youth with disabilities are not meeting the 24-Hour Movement Guidelines: Cross-sectional results from the national physical activity measurement (NPAM) study for children and youth with disabilities.
Arbour-Nicitopoulos KP, Bassett-Gunter RL, James ME … +7 more , Latimer-Cheung AE, Moore SA, Voss C, Best KL, Leo J, Bremer E, Martin Ginis KA
Disabil Health J · 2025 Oct · PMID 40335373 · Publisher ↗
BACKGROUND: Understanding patterns of movement behaviours for physical activity (PA), screen time (ST) and sleep in children and youth with disabilities (CYD) can identify participation gaps that inform country-specific...
BACKGROUND: Understanding patterns of movement behaviours for physical activity (PA), screen time (ST) and sleep in children and youth with disabilities (CYD) can identify participation gaps that inform country-specific intervention and policy. OBJECTIVE: To describe the 24-h movement behaviours and guideline adherence in CYD in Canada. The associations between age, gender, and disability type with meeting movement guidelines were also examined. METHODS: Cross-sectional caregiver-reported data (N = 524 CYD, Mage = 10.3 ± 3.1 years; 70 % boys; 49 % developmental disabilities) were collected on child PA, ST, and sleep. Items were derived from the Health Behaviour in School-aged Children survey, International Physical Activity Questionnaire-Adolescents and the Childhood Obesity, Lifestyle, and the Environment Diet and Lifestyle Questionnaire. Movement behaviours were described for the total sample and by age, gender, and disability type. Logistic regressions tested predictors of meeting the movement guidelines. RESULTS: CYD spent 34.2 ± 37.1 min in moderate-to-vigorous PA, 5.3 ± 3.9 h using screens, and 9.9 ± 1.1 h in sleep. 17.2 %, 20.3 %, and 89.0 % met the individual PA, ST, and sleep guidelines; 4.6 % met all three. Youth were less likely to meet the individual ST and sleep guidelines than children (OR = 0.16); participants with multiple disabilities were less likely to meet the ST guideline than those with developmental disabilities (OR = 0.33; ps < 0.001). Age, gender, and disability type did not significantly predict meeting the PA guideline. CONCLUSION: Most CYD do not meet the Canadian guidelines for PA and ST and the majority meet recommended levels for sleep. Guideline adherence is lower for youth (ST and sleep) and those with multiple disabilities (ST only).
Accessible, not Exploitable: Navigating fraud prevention in disability research.
Goddard KS, Hall JP, Kurth NK
Disabil Health J · 2025 Oct · PMID 40335372 · Full text
Disability-focused research is vital for informing policies and services that address the unique needs of people with disabilities. However, survey fraud poses a growing threat to the integrity of such research. Fraudule...
Disability-focused research is vital for informing policies and services that address the unique needs of people with disabilities. However, survey fraud poses a growing threat to the integrity of such research. Fraudulent responses, often facilitated by bots or scammers, disproportionately impact studies with small sample sizes, where even minimal distortion can significantly skew findings and misinform policy decisions. Compounding the issue, traditional fraud detection mechanisms, such as CAPTCHA tasks and automated response-time analysis, often exclude legitimate participants, particularly those who rely on assistive technologies or face accessibility barriers. This commentary examines the recruitment paradox inherent in disability research, where inclusive participation incentives inadvertently invite fraud while restrictive measures risk excluding genuine respondents. To address these dual challenges, we propose adaptive fraud detection tools, participatory design approaches, and equitable incentive structures that balance inclusivity with data integrity. These strategies advance robust, representative findings to support effective and equitable policy development.
Pain characteristics and impact of pain in individuals with spina bifida: Systematic review and meta-analysis.
Sin MP, Alriksson-Schmidt AI
Disabil Health J · 2025 Oct · PMID 40335371 · Publisher ↗
BACKGROUND: Pain is prevalent in spina bifida (SB), yet, it has received limited attention in research and healthcare. OBJECTIVE: To investigate pain severity, common pain sites, and pain interference with daily activiti...
BACKGROUND: Pain is prevalent in spina bifida (SB), yet, it has received limited attention in research and healthcare. OBJECTIVE: To investigate pain severity, common pain sites, and pain interference with daily activities and sleep in individuals with SB. METHODS: Literature was last searched in Scopus, Web of Science, Embase, PubMed, CINAHL, and Academic Search Complete in July 2024. Inclusion criteria included observational studies on open or closed SB and published articles in English from January 2000 to January 2024. Other spinal dysraphism conditions were excluded. Meta-analyses were conducted using random effects models. Narrative reviews were provided for studies excluded from the meta-analyses. The methodological quality of included articles was assessed using the risk of bias tool for prevalence studies. RESULTS: Fifteen studies (1301 participants) were included, with 80 % rated as moderate quality. Meta-analyses showed that adults with SB had moderate to severe pain on average (mean numeric rating score: 5.4, 95 % CI: 3.2, 7.6), with the most prevalent pain sites being the back 59.1 % (95 % CI: 39.8 %, 77.1 %) and hips 35.0 % (95 % CI: 10.0 %, 66.0 %). Literature on pain in newborns is limited. For children/adolescents, pain was observed from head to lower extremities with varying intensity, and pain in the head and back were most consistently reported. Impact of pain on daily activity and sleep was inconclusive. CONCLUSIONS: As individuals with SB can experience pain at any site with varying intensity, pain should be regularly assessed in this population. Findings cannot be generalized to those with communication or cognitive problems.
Developing a population-based proxy score of social developmental delay for pre-school children in a lower-middle income country.
Cunningham SA, Bonnett M, Rice C
Disabil Health J · 2025 Oct · PMID 40320303 · Publisher ↗
BACKGROUND: The distribution of early social developmental delays, which are often associated with autism spectrum disorder (ASD), is not well documented in low and middle-income countries. The UNICEF Multiple Indicator...
BACKGROUND: The distribution of early social developmental delays, which are often associated with autism spectrum disorder (ASD), is not well documented in low and middle-income countries. The UNICEF Multiple Indicator Cluster Survey (MICS) collects population-representative data on child health in many countries. OBJECTIVE: The objective of the study was to create a social developmental delay scale to estimate population-based early social delay relevant for ASD among pre-school children and identify characteristics associated with delay in a lower-middle-income country. METHODS: Data were from the Honduran 2019 MICS6. We created a 10-point social developmental delay proxy score (SDDPS) with scores ≥3 indicating possible delay. Using data from children 48-59-month-old (n = 1723), reported by primary caregivers, we estimated prevalence of social developmental delays; we used linear and Poisson regressions to characterize associations between SDDPS and socio-demographic characteristics. RESULTS: Applying the SDDPS, 4.6 % (95 % CI: 0.61 %:8.66 %) of 4-year-olds in Honduras had scores consistent with social developmental delays, indicated by 3 or more domains of concern relating to learning behavior and social interaction. Sixty-five percent had one or two domains of possible concern, with scores in domains relating to learning behavior being the most common. Differences across sex, age, urbanicity, and socioeconomic status were not significantly associated with delays in multivariate models. CONCLUSIONS: Existing surveys may be used to yield population-relevant data on social developmental delay in settings where more sensitive measures are not available at the population level. The SDDPS provided a preliminary estimate of the prevalence of social developmental delays in a lower-middle income Latin American country. The scale must be validated for use in this and other populations.
School burnout among students with and without disabilities before, during, and after the COVID-19 pandemic.
Holm ME, Sainio P, Lehtola SMH … +4 more , Gissler M, Luoma ML, Salmela-Aro K, Kiviruusu O
Disabil Health J · 2025 Oct · PMID 40316490 · Publisher ↗
BACKGROUND: Students' mental health problems increased during the COVID-19 pandemic and persisted afterward. Evidence regarding school burnout-particularly among disabled students-is limited. OBJECTIVE: We assessed schoo...
BACKGROUND: Students' mental health problems increased during the COVID-19 pandemic and persisted afterward. Evidence regarding school burnout-particularly among disabled students-is limited. OBJECTIVE: We assessed school burnout and its changes among students with specific (only cognitive, only sensory, only mobility, or several) and any (at least one of the three domains) disabilities compared to those without disabilities before (2019), during (2021), and post-pandemic (2023). METHODS: We analyzed population-level cross-sectional data from the Finnish School Health Promotion study, including 467,186 lower secondary, upper secondary, and vocational students (mean age = 16.2; SD = 1.22) from 2019, 2021, and 2023 using logistic regression. RESULTS: At all school levels, students with any disabilities reported school burnout more often than those without disabilities. Those with several disabilities were the most vulnerable, particularly girls. At vocational level, burnout prevalence was about half that of other levels among girls and boys with and without any disabilities. In lower secondary school, burnout increased among girls with and without any disabilities from 2019 to 2021 and remained high post-pandemic. For lower secondary boys, burnout increased only among those without disabilities from 2019 to 2021 and persisted post-pandemic. For boys with any disabilities, burnout began to increase post-pandemic. In upper secondary and vocational schools, burnout increased among girls and boys with and without any disabilities from 2019 to 2021. Post-pandemic, these increases declined. CONCLUSIONS: Schools require resources addressing school burnout inequalities, especially during crises and among disabled girls. Post-pandemic, addressing persistent school burnout among lower secondary students with disabilities is crucial.
Examining disparities in cervical cancer diagnosis at the intersection of disability and sexual orientation.
Orji AF, Drews-Botsch C, Turpin R … +2 more , Gimm G, Parekh T
Disabil Health J · 2025 Oct · PMID 40312203 · Publisher ↗
BACKGROUND: Cervical cancer risk factors are more prevalent among women with disabilities and sexual minorities, yet little is known about how these factors intersect. OBJECTIVE: To examine differences in cervical cancer...
BACKGROUND: Cervical cancer risk factors are more prevalent among women with disabilities and sexual minorities, yet little is known about how these factors intersect. OBJECTIVE: To examine differences in cervical cancer diagnosis at the intersection of disability and sexual orientation. METHODS: Using a nationally representative sample (N = 80,447) obtained from 2014 to 2023 National Health Interview Survey data, we conducted logistic regressions to estimate the odds of cervical cancer diagnosis at the intersection of disability and sexual orientation among women (25-65 years). We calculated three measures of interaction: 1) relative excess risk due to interaction (RERI); 2) proportion attributable to interaction (AP); and 3) synergy index (SI). RESULTS: Heterosexual women with disabilities were more likely to receive a diagnosis of cervical cancer (aOR = 2.15, 95 % CI: 1.75-2.64) compared to heterosexual women without disabilities. This disparity was even greater among women with disabilities who identified as sexual minorities (aOR = 2.98, 95 % CI: 1.86-4.77). The interaction measures suggest a synergistic effect between disability and sexual orientation on cervical cancer risk. Specifically, women with disabilities in multiple functional areas had increased odds of a cervical cancer diagnosis, regardless of sexual orientation (Heterosexual: aOR = 2.94, 95 % CI: 2.33-3.70; Sexual minorities: aOR = 3.04, 95 % CI: 1.25-7.42). CONCLUSION: The findings suggest that disability status plays a significant role in exacerbating the risk of cervical cancer, while the combination of disability and minority sexual orientation may further compound adverse experiences that disproportionately contribute to this risk.
Inclusivity in Design: Integrating human-centered methodologies in disability research.
Abouzaglo S, Patel D, Annaswamy T
Disabil Health J · 2025 Oct · PMID 40312202 · Publisher ↗
To achieve equity in health and research, the inclusion and active participation of people with disabilities (PWD) is critical. Our commentary posits that human-centered design (HCD) is essential in medical research's eq...
To achieve equity in health and research, the inclusion and active participation of people with disabilities (PWD) is critical. Our commentary posits that human-centered design (HCD) is essential in medical research's equity efforts. Eliciting issues from end-users directly and implementing an iterative problem-solving process, HCD is a framework well-suited to capture the lived experiences of PWD, better understand their unique needs, and work towards addressing them. Disability research in healthcare is frequently not conducted in equal partnership with its end-users, PWD. Current practices, like inclusive design, though well-intentioned, may overlook the complex experiences of PWD, leading to ineffective interventions. Medical research must centralize PWD to uncover outcomes resonant with the disability community. Integrating HCD frameworks of "Inspiration", "Ideation", "Implementation" and the "Investment" required to conduct HCD in disability research represents a shift towards research methodologies collaboratively created with and by PWD, embracing inclusivity and respect in person-centered care.
Experiences of women with disabilities in Lithuania when their gender, disability, domestic violence, and mental health services intertwine.
Grigaitė U, Aginskaitė S, Pedrosa B … +5 more , Oyine Aluh D, Santos-Dias M, Silva M, Cardoso G, Miguel Caldas-de-Almeida J
Disabil Health J · 2025 Oct · PMID 40253285 · Publisher ↗
BACKGROUND: Women with disabilities are two to five times more likely to experience domestic violence (DV), including intimate partner violence (IPV), when compared with women without disabilities. Survivors of DV and IP...
BACKGROUND: Women with disabilities are two to five times more likely to experience domestic violence (DV), including intimate partner violence (IPV), when compared with women without disabilities. Survivors of DV and IPV are around three times more likely than women without this life experience to develop mental health conditions or a psychosocial disability. OBJECTIVE: To explore the perspectives of women with disabilities who are survivors of DV and IPV about their help-seeking experiences and their use of mental health services in Lithuania. METHODS: A qualitative explorative study was implemented within an experiential framework. Semi-structured interviews (n = 15) were conducted with women-survivors of DV who have sensory, physical, psychosocial, and intellectual disabilities. Audio recordings were transcribed verbatim and analysed thematically using MAXQDA software. RESULTS: The key findings highlight the complex intersection between gender, disability, and DV, including IPV. Women with disabilities may be extremely dependent on their abusers for daily individual support and may also experience disability-based violence as a result of this situation. Societal stigma and victim-blaming attitudes, as well as the lack of community-based services, may prevent survivors from seeking help. However, those who do may benefit greatly from support provided by mental health services. CONCLUSIONS: Further qualitative and quantitative research concerning the interlink between the areas of gender, disability, DV and IPV, and the provision of mental health services is needed, especially about what interventions might be the most effective for this particular population.
Multi-level factors associated with the sedentary behavior of adults with intellectual disabilities in community living arrangements.
Laxton P, Healy S, Brewer B … +5 more , McCormick B, Orsega-Smith E, Smith L, Daly J, Patterson F
Disabil Health J · 2025 Oct · PMID 40210581 · Publisher ↗
BACKGROUND: Sedentary Behavior (SB) is an independent risk factor for cardiometabolic diseases and mortality. Adults with intellectual disabilities (ID) that live in Community Living Arrangements (CLAs) participate in hi...
BACKGROUND: Sedentary Behavior (SB) is an independent risk factor for cardiometabolic diseases and mortality. Adults with intellectual disabilities (ID) that live in Community Living Arrangements (CLAs) participate in higher SB, however the factors associated with SB are unknown in this group. OBJECTIVE: The cross-sectional study investigated the multi-level determinants related to SB among adults with ID in community living arrangements (CLAs). METHODS: Adults with ID who lived in CLAs wore an activPAL device for seven days so that SB could be estimated. Prolonged SB and total SB duration served as the outcome variables. Electronic surveys assessed factors across the levels of the social-ecological model. Bivariate analyses estimated the association between each of the independent variables with each of the SB outcomes followed by a multivariable analysis using Least Absolute Shrinkage and Selection Operator (LASSO) regressions for both prolonged SB and total SB duration. RESULTS: Study participants (n = 36) had a mean age of 44.1 years (SD = 15.01), were predominantly male (58.33 %) and White (83.33 %). Nearly half (n = 16; 47.22 %) exhibited prolonged SB, spending on average 7.46 h (SD = 2.23) in SB daily. The LASSO regression identified higher independence in activities of daily living (ADL) and low levels of staff conflict as being associated with lower total SB duration and less likelihood of prolonged SB. CONCLUSION: Our findings underscore the influence of multi-level factors on SB in adults with ID. These data suggest that interventions to reduce SB should consider not just individual traits but also the broader social and environmental contexts.
Unpacking the relationship between autism, sport participation, and adolescent health: A causal mediation analysis.
O'Flaherty M, Hill J, Bourke M … +4 more , Fortnum K, Thomas G, Gomersall SR, Cairney J
Disabil Health J · 2025 Jul · PMID 40199679 · Publisher ↗
BACKGROUND: Autistic children are less likely to participate in sport than non-autistic children, and sport participation may improve health and health related quality of life. It is therefore possible that sport partici...
BACKGROUND: Autistic children are less likely to participate in sport than non-autistic children, and sport participation may improve health and health related quality of life. It is therefore possible that sport participation may partially mediate the association between autism and adolescent health and health related quality of life. Sport participation may have distinct effects for autistic and non-autistic children, and these effects may also differ between team and individual sports. OBJECTIVES: The study had two objectives. First, to estimate cumulative effects of sport participation (team or individual) between ages 8-15 on adolescent health and health related quality of life and determine whether effects of sport participation differed for autistic children compared to non-autistic children. Second, to determine whether sport participation (team or individual) mediated the relationship between autism and adolescent health and health related quality of life. METHODS: Methods for causal mediation analysis were used to analyse data from a representative cohort of Australian children (n = 313 autistic; 6346 non-autistic) between ages 8-15. Sport participation was reported by parents from ages 8-15. Outcomes at age 14-15 included body mass index, the Pediatric Quality of Life Inventory, the Strengths and Difficulties Questionnaire, and the Short Moods and Feelings Questionnaire. RESULTS: Non-autistic children's health benefited from all forms of sport. For autistic children, however, team sport participation was linked to worse mental health and no benefit in physical health. Individual sport improved physical health related quality of life, but not body mass index or mental health for autistic children. The mediation hypothesis was not supported. CONCLUSIONS: Our findings suggest that greater efforts are needed to adapt community sport to encourage equitable participation and ensure that participation benefits autistic children's health and health-related quality of life equally.
"The Scarlet Letter B": A qualitative study to improve health care provider education for patients who are blind or low-vision.
Fischbein R, Bracken R, Bhambra R … +3 more , Hameed O, Congeni D, Hughes AS
Disabil Health J · 2025 Oct · PMID 40194903 · Publisher ↗
BACKGROUND: Individuals who are blind or low-vision face multiple barriers to quality health care, including insufficient training for health care providers and staff. Limited research has examined provider and staff ski...
BACKGROUND: Individuals who are blind or low-vision face multiple barriers to quality health care, including insufficient training for health care providers and staff. Limited research has examined provider and staff skills and knowledge gaps, attitudinal barriers, or relevant training needs specific to caring for blind or low-vision patients. OBJECTIVE: In this qualitative study, we sought to understand, from the perspective of blind or low-vision individuals, what needs to be known and improved to better care for this population. METHODS: We conducted four structured focus groups with 22 blind or low-vision individuals. Questions assessed general health care impressions, positive and negative health care experiences, and recommendations for training providers. RESULTS: Reflexive thematic analysis was conducted, which identified three overlapping, training-focused themes: 1) disability etiquette and communication, 2) understanding barriers to care, and 3) dismantling ableist stereotypes and misconceptions. The need for health care provider and staff empathy and compassion is emphasized as a central, core theme shared by each of the training-focused themes. CONCLUSION: Our findings confirm and expand previous calls for improved education regarding the health care needs for patients who are blind or low vision. Most significantly, we draw from recent literature in health professions education to propose training interventions targeted to the training needs identified via thematic analysis. We advocate for educational design and implementation that is community-engaged and centers the patient who is blind or low vision as the educator.
Experiences of individuals with severe disabilities using assistive devices: A qualitative study.
Jang HY, Chung D, Oh E … +1 more , Son Hong GR
Disabil Health J · 2025 Jul · PMID 40194902 · Publisher ↗
BACKGROUND: Assistive devices positively impact the lives of people with disabilities. However, many individuals face challenges preventing them from fully utilizing these tools, which is an unresolved issue in South Kor...
BACKGROUND: Assistive devices positively impact the lives of people with disabilities. However, many individuals face challenges preventing them from fully utilizing these tools, which is an unresolved issue in South Korea. OBJECTIVE: This study explores the experiences of individuals with severe disabilities regarding the use of assistive devices. METHODS: Data were collected from 13 such individuals through individual in-depth interviews from December 2021 to April 2022 and then analyzed using content analysis. RESULTS: Three main categories-"Assistive devices as catalysts for independent living," "Unmet realities and limitations of assistive devices," and "Hopes for a better future with assistive devices"-and eight sub-categories related to the participants' experiences were derived. The participants experienced both the positive effects of assistive devices on their independence and social participation, as well as deficiencies in the quality of the devices, service process, and support systems. Additionally, they noted environmental challenges and social constraints. CONCLUSIONS: The findings suggest the importance of ensuring the systematic management of device and environmental quality, among other things, and can inform the development of more effective and user-centered assistive technologies based on the experiences of individuals with severe disabilities.
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