Disability and Health Journal最新文献

The World Health Organization's International Classification of Functioning, Disability and Health (ICF), the international standard for the description of functioning and disability, completely ignores a specific form of accessible communication despite its potential to improve functioning and reduce disability: Easy Language, a form of standard language with substantially reduced linguistic complexity. Starting with a proposal for how and where Easy Language could be appropriately integrated into the ICF, the commentary then outlines the various benefits and opportunities for social policy that could be associated with doing so. It also notes several potential challenges involved in this process. If used correctly, the integration of Easy Language into the ICF could prove useful for both professional users of the ICF and Easy Language target groups.

Background: Special services including physical, occupational, speech, or behavioral therapies are associated with enhanced long-term functioning and well-being of children and youth with special healthcare needs (CYSHCN). Yet, there is a lack of recent evidence on the utilization of these services, and the age at which CYSHCN first receive them.

Objective: This study assessed the distribution, timing, and determinants of special services utilization across different types of special healthcare needs.

Methods: Data from 63,734 caregivers of CYSHCN aged 0-17 years from the 2016-2022 National Survey of Children's Health were analyzed using Rao-Scott Chi-Square, Log-rank, and Cox proportional hazard tests.

Results: Overall, 41.9 % of CYSHCN ever received special services, including 91.4 %, 90.3 %, 88.0, and 34.1 % of children and youth with Down syndrome, cerebral palsy, autism, and other special healthcare needs (OSHCN), respectively. Children with Down syndrome and cerebral palsy received special services earlier than those with autism or OSHCN. Utilization of special services was higher among male children and youth (aHR 1.41; 95 % CI: 1.33-1.49), aged 0-5 years (aHR: 4.70; 95 % CI: 4.32-5.11), second or later born children (aHR: 1.18; 95 % CI: 1.10-1.26), from families with low-income (aHR: 1.14; 95 % CI: 1.04-1.24), living with married parents (aHR: 1.11; 95 % CI: 1.04-1.19), consistently insured (aHR: 1.24; 95 % CI: 1.08-1.42), and with a more complex health condition (aHR: 3.40; 95 % CI: 3.13-3.70) compared to their counterparts.

Conclusions: These findings highlight the necessity of adopting tailored approaches for children with different special healthcare needs to optimize and sustain the utilization of special services.

Background: Children and youth with special health care needs (CYSHCN) comprise 23 % of the pediatric population in South Carolina (SC), compared to state prevalences of 13.6 %-24 % nationwide. While occupational therapy (OT) is critical to maximizing CYSHCN's participation in daily activities, there are significant disparities in rehabilitation access in the Southeast region.

Objective: This study examines associations between patient-and community-level factors and outpatient OT utilization.

Methods: This study analyzes OT utilization data among CYSHCN (N = 1913) in a health system in SC from 07/01/2022-06/31/2023, merged with Child Opportunity Index 2.0 zip-code level social drivers of health (SDOH) data. SDOH are non-medical factors that affect individual's long-term health, with estimates ranging from "very low" to "very high" opportunity. Structural equation modeling was conducted to understand complex associations between observed and latent variables in a real-world context.

Results: CYSHCN were diagnosed with congenital (40.77 %), developmental (37.87 %), and neurological/neuromuscular conditions (21.36 %). CYSHCN who were non-Hispanic Black or Hispanic and were hospitalized were associated with living in lower opportunity areas. CYSHCN with private or military/other insurance/self-pay were associated with living in higher opportunity areas than Medicaid-insured CYSHCN. CYSHCN who were female and ≥12 years demonstrated lower OT utilization. CYSHCN who participated in speech and/or physical therapy demonstrated higher OT utilization. OT utilization increased with each increase in SDOH.

Conclusion: With these findings, healthcare providers may consider accessibility barriers, including transportation, when referring CYSHCN to OT services. Further research is needed to examine the impact of household-level SDOH on OT access across SC.

Background: Identity development explores how individuals perceive themselves based on their life experiences, including their current self and aspirations. Athlete Identity has been studied using a 4-factor framework across various sports and ability groups. However, there is limited research on how individuals with physical disabilities perceive themselves as athletes and how an acquired disability impacts identity compared to a congenital disability.

Objective: To test the validity of the 4-Factor Model of Athlete Identity and to determine if athletic identity differs between para-athletes who have congenital versus acquired disabilities.

Methods: Secondary analysis of cross-sectional data from the National Wheelchair Basketball Association. Participants consisted of 408 individuals (8 years and older) who play wheelchair basketball (n = 315 male; 29.13 ± 13.89 yrs; M ± SD) who responded to a brief online questionnaire including basic demographics and the 10-item Athlete Identity Measurement Scale (AIMS).

Results: No significant differences in total AIMS scores were found between participants with congenital disabilities and participants with acquired disabilities. Age was a significant covariate. Eigenvalue analysis of the AIMS scores shows that 2 factors describe this population of athletes.

Conclusions: Disability acquisition is not associated with total AIMS scores. Athletic identity is weaker in older participants suggesting a more inclusive self-schema as one ages. The 4-factor model of Athletic Identity is not applicable in this population. Continued research into the intersection of athlete and disability identity is warranted.

Abstract presented: North American Society for the Psychology of Sport and Physical Activity, 2019.

Background: While research has provided key insights into mortality rates and risks for individuals with cerebral palsy (CP), clinically useable mortality risk estimates remain unreported for adults with CP, especially by key patient-level factors.

Objective: The objective of this study was to generate clinically useable mortality risk estimates among adults with CP to inform clinical decision making.

Methods: This retrospective cohort study, using a fee-for-service Medicare database, identified adults ≥18-years-old with CP from 01/01/2008-12/31/2010 and followed through 12/31/2019 for death. Mortality risk at 1-, 3-, 5-, and 9-year intervals were selected based on common clinical length of time to reasonably benefit from preventive care. Sex-stratified analyses assessed risk estimates by narrow age group (18-25/26-34/35-44/45-54/55-64/65-74/≥75 years old) and multi-morbidity group (Whitney Comorbidity Index score 0-2/3/4-6/≥7).

Results: Of 24,767 adults with CP, n = 12,962 were men (mean [SD] age = 48.3 [15.0] years) and n = 11,805 were women (age = 49.7 [15.8] years). Loss to follow-up was rare. 1-year risk was similar between men and women (3.4 % vs. 3.3 %), but increased slightly more for men than women through 9-years (30.1 % vs. 28.0 %). As expected, the mortality risk increased with older age and higher WCI scores. The probability of death (and survival) is presented per age and multi-morbidity group for men and women with CP.

Conclusions: Mortality risk estimates were reported at clinically relevant intervals by age, sex, and multi-morbidity status. This information can be used to weigh harm-to-benefit ratios of screening and treatment strategies based on mortality expectancy estimates.

Background: Take-up gaps in safety net programs, long documented in the US, are an important policy problem as non-take up compromises the equity objectives and efficacy of programs. The Social Security Disability program is an example of this: more than 20 million adults report a work disability, but only around 11 million currently receive disability benefits through the Social Security Disability Insurance or Supplemental Security Income programs.

Objectives: We examine decision-making around benefits application among adults with self-reported work disability who have never applied for disability benefits.

Methods: We conducted 39 interviews with work-disabled adults who have never applied for disability benefits. Thematic analysis identified key barriers and inhibitors to disability application.

Results: High transaction costs involved in disability applications coupled with the widespread perception of low approval rates was mentioned as a critical deterrent. Uncertain and lengthy medical processes after disability onset were also frequently reported as a key deterrent. Stigma about receiving disability benefits did not emerge as a factor in application behavior, although a change in self-concept involving an adjustment to benefit-receiving, work-disabled status was cited as a barrier to claiming.

Conclusion: Our results broadly align with those of other research that examined the information, transaction, and social costs of applying for benefits. Nevertheless, the qualitative data afford a more in-depth, grounded understanding of the primary factors affecting application decisions, and how those interact. These insights are important to inform targets for interventions to reduce barriers to take-up of benefits among potentially eligible adults with disabilities.

Background: The literature indicates that youth with Fetal Alcohol Syndrome (FAS) may experience high rates of both physical and mental health issues compared to youth without FAS. However, there is little population level health data available for youth with FAS, particularly for youth transitioning from pediatric to adult healthcare services.

Objective: The objective of this study was to compare health care usage of youth with Fetal Alcohol Syndrome to youth without any intellectual/developmental disabilities (IDD).

Methods: This study used a retrospective cohort design and population-level administrative health data to examine five aspects of health care usage by youth with FAS and compare them to youth with no intellectual/developmental disability. The variables were medically required dental care, visits to emergency departments and visits for mental health issues. In addition, the study stratified data by age groups and examined the difference between youth aged 15-19 and youth aged 20-24.

Results: Youth with FAS had higher adjusted odds of medically required dental care, visits to the emergency department and visits for anxiety/depression, psychotic illnesses and substance use disorders compared to youth with no IDD. The odds of a medically required dental visit, emergency department visit and visit for psychotic illness or substance use disorder were also higher for youth aged 20-24 years compared to youth aged 15-19 years.

Conclusions: These findings indicate that youth with FAS require urgent attention for each of the medically-related variables included in this study. The need for attention to their health care needs may increase as these youth transition from pediatric to adult health care services.

Background: Peer mentors have a role in facilitating the participation, health and well-being of people who have had a traumatic injury. Few studies have explored the involvement of peer mentors in an early intervention vocational rehabilitation (EIVR) service following trauma.

Objective: This study aimed to explore the experience of implementing peer support within the context of an EIVR service from the perspectives of the peer mentors themselves, the vocational therapists supervising them, and the patients that received peer mentoring.

Methods: Semi-structured interviews were conducted with twenty participants from three groups: peer mentors (n = 4); vocational therapists (n = 3); and patients who received the EIVR intervention (n = 24). Data were thematically analysed.

Results: Three themes were identified: The value of peer input in an EIVR service, The facilitators impacting the value of peer involvement as part of the EIVR service, The challenges impacting peer input as part of an EIVR service.

Conclusions: The inclusion of peer mentors early after major traumatic injury was a unique and valuable addition to the EIVR service. Offering peer support early on in rehabilitation enabled patients to gain a sense of hope for their future, and the expectation that returning to work was a realistic option. The careful selection of peer mentors, and ensuring they receive adequate preparation and ongoing supervision are vital to support their well-being during the intervention. Aiming to match peer mentors with similar injuries and work backgrounds to patients is an important contributor to the likely ongoing engagement of the mentee with the mentor.

Background: Work participation is related to a better quality of life (QoL) for people with spinal cord injury (SCI), however, the specific work characteristics that are related to QoL in people with SCI are largely unknown.

Objectives: To investigate which work characteristics are related to QoL in people with SCI.

Methods: Cross-sectional survey of people with SCI in the Netherlands. The survey consisted of demographic, SCI-related, and work-related items. Work control was measured with the short Job Content Questionnaire and work stress with the effort-reward imbalance (ERI). People of working age with at least 1 h of paid work per week were included. Hierarchical regression analysis was performed to examine the contribution of work characteristics to QoL while controlling for potential clinical and demographic confounders.

Results: The study included 169 persons with SCI (74.6 % male, 47.8 ± 9.3 years, time since injury 18.9 ± 11.1 years). The final hierarchical regression model explained 31 % of the variance in QoL. The number of SCI-related health complications contributed the strongest to QoL (ß = -.36), followed by work hours (β = .24), and work stress (β = .24). However, work control did not contribute significantly to QoL in our final model.

Conclusion: Work hours and work stress contributed to QoL in people with SCI, but the number of SCI-related health complications was the strongest contributor. Future research and vocational rehabilitation should be directed to both medical and work-related variables to enhance the QoL of working people with SCI.