Disability and Rehabilitation最新文献

Purpose: This article examines how ableist assumptions may influence spinal cord injury (SCI) rehabilitation and hinder the adjustment to life with a disability.

Materials and methods: Recognising the growing importance of lived experience insight, we integrate experiential learning, critical reflection, and engagement with academic literature to provide a reflexive account drawing on our expertise as quadriplegics and researchers.

Results: Ableism may influence rehabilitation, especially as internalised by people with SCI. Informed by common cultural narratives, such as the positivity myth and inspiration porn, ableism may lead to rehabilitation practices that prioritise physical restoration over psychosocial adjustment, particularly standing and walking, and reinforce unrealistic expectations that impede acceptance of disability. Ableist assumptions may promote the use of unnecessary, clunky and costly technologies such as standing wheelchairs and exoskeletons.

Conclusion: Embedding disability studies into clinical education and practice and elevating the leadership of people with lived experience of SCI can help the rehabilitation field in its ongoing efforts to move beyond a predominantly biomedical model towards a more holistic and expansive vision of rehabilitation that better enables individuals to adjust to and flourish with disability.

Purpose: Stickler syndrome is a rare, hereditary connective tissue disorder characterized by visual, auditory, and musculoskeletal complications. Research on quality of life remains limited. This study aimed to: (i) explore existing literature on psychosocial aspects, pain, fatigue, and quality of life in individuals with Stickler syndrome, (ii) describe the impact of health complaints on daily living, contacts with healthcare- and social service systems and quality of life in a cohort of adults with Stickler syndrome.

Methods: A combination of a systematic scoping review and a cross-sectional questionnaire study was utilized. The questionnaire included questions on demographics and health complaints, and several validated instruments: PROMIS-57, Satisfaction with Life Scale and LiSat-11. Only patients with a verified diagnosis were included.

Results: Of 43 articles read, five studies were included. Four addressed pain and one examined quality of life in children. Chronic pain was a prevalent finding, impacting daily functioning and quality of life. In the questionnaire (n = 24), 92% reported chronic pain, along with fatigue, anxiety symptoms, and reduced quality of life. Still, participants reported education, employment, and family life.

Conclusion: Individuals with Stickler syndrome experience health challenges affecting various aspects of life. Further studies are needed to develop evidence-based practice for this group.

Purpose: This scoping review sought to describe how primary care teams including audiologists and speech-language pathologists (S-LPs), embody well-functioning system properties, within the Theory of Systems Change.

Materials and methods: This review was completed in accordance with the Joanna Briggs Institute Manual for Evidence Synthesis. MEDLINE, Cochrane Central Register of Controlled Trials, Embase and Embase Classic, APA PsycInfo, CINAHL, Scopus, and Web of Science databases were searched for articles focusing on (1) audiologists and S-LPs and (2) primary care teams. Retrieved articles then underwent a screening and extraction process.

Results: Forty-six studies were identified. Considering the components of the Theory of Systems Change, all studies demonstrated evidence-driven action and learning. Forty-two studies discussed adaptation strategies to external challenges. Teams aligned their work with micro, meso, macro, and mega system level considerations. Collaboration occurred through team meetings, information technology, care coordination, role clarification and negotiation, and joint care delivery.

Conclusions: Bridging systems level and clinical theories can provide better context to advocate for the integration of these two professions into primary care teams. Audiologists and S-LPs enable patient/family participation which allows healthcare providers to gather the necessary information through communication focused care that can effectively integrate clinical and systems level frameworks.

Aims: This study evaluated the effectiveness of the Attention Skill Training (ASTride) protocol-an Equine-Assisted Occupational Therapy (EAOT) intervention-in improving participation, performance skills, and daily function among children with Attention Deficit Hyperactivity Disorder (ADHD).

Methods: A prospective cohort study with an Interrupted Time-Series design was conducted with 50 children (mean age = 9.51 years, Standard Deviation = 1.52) diagnosed with ADHD. Assessments were conducted at baseline (Time 1), pre-intervention (Time 2), post-intervention (Time 3), and three-month follow-up (Time 4). Measures included the Child Performance Skill Questionnaire, Child Participation Questionnaire (CPQ), and the Canadian Occupational Performance Measure (COPM).

Results: Using a repeated measure ANOVA revealed statistically significant improvements from Time 1 to Time 4 in everyday participation as presented in the CPQ scales of frequency, independence, enjoyment, and parental satisfaction alongside notable gains in motor, process, and communication skills. COPM scores demonstrated sustained progress in performance and satisfaction with the intervention goals.

Conclusions: The ASTride intervention effectively enhanced participation in everyday activities and performance skills among children with ADHD, with benefits sustained beyond the intervention period and beyond the stable setting. These findings highlight ASTride's potential as a comprehensive, evidence-based approach to addressing ADHD-related challenges.

Purpose: To adapt a West and Central African version of the widely used ABILHAND-Kids questionnaire for measuring manual ability in children with cerebral palsy (CP).

Materials and methods: This cross-sectional study included 136 children with CP from Benin (n = 67) and Cameroon (n = 69). Data were collected from parents using an experimental version with 64 items. A subsample of 107 parents responded again two weeks later. Calibration was based on the Rasch model using RUMM2030 software.

Results: The adapted version of ABILHAND-Kids consists of 21 items with well-discriminated response categories. It defines a unidimensional and linear measure of children's performance in daily activities involving upper extremities (mean chi-square = 41.87, p = 0.48). The measure is invariant across countries, parents' education, children's age and gender, MACS levels, and type of CP. It shows excellent internal consistency (R = 0.94) and high test-retest reliability for both item difficulty hierarchy (ICC = 0.98) and children's measures (ICC = 0.99). Significant correlations were found with the MACS (rho = -0.64), Box and Blocks Test (more-affected (r = 0.55), less-affected hand (r = 0.54)), and ACTIVLIM-CP-WA (r = 0.83).

Conclusions: The West and Central African version of ABILHAND-Kids is valid and reliable for assessing the manual ability of children with CP in daily activities within the African sociocultural context. Implications for RehabilitationThe West and Central African version of ABILHAND-Kids questionnaire offers a valid and reliable measurement of manual ability in daily life activities in the African context.As a Rasch-built scale, linear measures allow manual ability changes to be quantified in African children with cerebral palsy from 3 to 19 years.Its high measurement precision and availability (https://www.rehab-scales.org) enable manual ability assessment in West and Central African children with cerebral palsy, whatever parents' education and children's age, gender, manual ability levels, and type of cerebral palsy.

Purpose: To develop a comprehensive ICF Core Set (ICF-CS) for vertebral fragility fracture.

Materials and methods: The development of ICF-CSs involves three phases: i) systematic literature review and qualitative studies; ii) linking process to identify the ICF codes and categories; iii) international consensus process. i) We performed a literature search and qualitative studies with people with vertebral fragility fractures and healthcare professionals; ii) We linked the findings from the search and qualitative studies to the ICF categories, and drafted the proposed ICF-CS; iii) We performed an international consensus process involving experts with clinical or research experience in management of vertebral fragility fractures.

Results: We identified 40 categories (second level categories, n = 28; third level categories, n = 11; and fourth level category, n = 1) from the international consensus process. Sixteen categories pertained to body functions and structures impairments, n = 12 to activity limitations, n = 4 to participations restrictions, and n = 7 to environmental factors.

Conclusions: The new ICF-CS for vertebral fragility fracture reports the consequences of vertebral fragility fractures in terms of body impairments, activity limitations, and participation restrictions, while taking into account personal and environmental factors that increase the negative impact of vertebral fragility fractures and hinders the access to care.

Purpose: To use the "three delays model" as a framework to identify and synthesise qualitative literature that identifies barriers to accessing and utilising P&O services in low-middle-income countries from the perspective of individuals with disabilities and clinicians.

Methods: A systematic search of four databases was used to identify research exploring user and clinician experiences in accessing P&O services in LMICs. Selected search terms and combinations identified through an adapted version of the SPIDER tool were used to identify studies. All retrieved articles were critically appraised using the CASP tool. Data were extracted, and themes were synthesised using a deductive thematic approach guided by the three-delays model.

Results: Ten key themes were generated and linked to the three-delays model. Fear of perceived financial implications, transportation, and respectful care were some of the themes affecting accessibility in the first, second, and third delays, respectively. The findings suggest that the delays are interconnected components that might have a cascading effect on access to P&O services as a whole. Minimising delays can improve the accessibility of P&O services in low-middle-income countries.

Purpose: To conduct an environmental scan of known peer support programs implemented for adults with chronic health conditions and/or their caregivers in Ontario, Canada and synthesize these results, to inform future efforts to co-design peer support programs with and for adults with special health care needs (ASCN).

Materials and methods: A systematic online search was performed, to identify peer support programs for individuals with chronic health conditions and their caregivers in Ontario. Relevant program details were extracted from peer support group webpages and where possible peer support program coordinators were contacted for additional information.

Results: Twenty programs met inclusion criteria. There was considerable variation in the type of peer support programs offered across Ontario. Despite this heterogeneity, the environmental scan identified several important trends across program offerings. Key amongst these are inclusive programming for both patients and family, and individualized/flexible service delivery. Program and outcome evaluation was lacking across programs.

Conclusions: Peer support programs in Ontario used diverse strategies but shared the goal of creating safe spaces for individuals with similar lived experiences to connect. Future research on peer support programs for people with chronic health conditions should assess short- and long-term outcomes to evaluate their impact on populations served.

Purpose: To review research on mobility development in children, adolescents and young adults with cerebral palsy (CP).

Methods: This scoping review included longitudinal studies on mobility development of children and young people (19-21 years) with CP. Findings were reported considering mobility capacity and performance of individuals with CP, observed in low- and middle- or high-income countries. The results were analyzed by two physicians and a mother of a child with CP, using Patient and Public Involvement (PPI) strategy.

Results: Eleven studies included 3,047 individuals with CP. Lower Gross Motor Function Classification Measure (GMFCS) levels were associated with better mobility capacity and performance. Additionally, the lower the GMFCS level, the more stability is achieved at older ages. Ten studies in high-income countries showed that mobility capacity stabilized before performance. The only study conducted in a low-income country showed a decline in mobility capacity in early adolescence.

Interpretations: The development of mobility capacity and performance may be related to the presence of different contextual factors in socioeconomically diverse countries. The findings of this review are important for sharing, discussing, and managing mobility development patterns with family members.

Purpose: This randomized controlled trial examined the effects of a treatment program based on external focus of attention (EFA) and internal focus of attention (IFA) on spatiotemporal gait parameters and balance performance in children with unilateral cerebral palsy (uCP).

Methods: Twenty-four children with uCP, aged 6-12 years, were randomly assigned to EFA (n = 12) or IFA (n = 12) groups. Both groups received the same balance and gait exercises for six weeks, differing only in attentional focus instructions. Assessments included the C-Mill VR+ gait system, Single-Leg Stance Test, Pediatric Balance Scale (PBS), and Trunk Control Measurement Scale.

Results: After the intervention, the EFA group showed significantly greater improvements in cadence (+15.8 steps/min), affected limb stance phase (+4,17%), and PBS scores (+5 points) compared to the IFA group. Cadence and PBS changes suggest clinical relevance, though the stance phase increase may reflect compensation rather than functional improvement.

Conclusion: Both attentional focus and gait and balance parameters improved. EFA-based training was more effective than IFA in improving some parameters of gait and balance. These findings suggest that externally focused instructions can enhance motor learning in children with uCP, though further research is warranted to assess the clinical relevance of smaller differences.

Clinical trials: https://clinicaltrials.gov/study/NCT06170814.