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BACKGROUND: People with intellectual disabilities are rarely involved in research on quality of life. The study sought to answer the question: what do people with intellectual disabilities believe improves or hinders their quality of life? METHOD: Using an inclusive, accessible research design, 18 participants met in small groups to answer the study's question using their choice of arts-based media. Participants completed the analysis collaboratively, identifying key themes among their responses. RESULTS: The participants concluded that supports, well-being, hobbies, and activities contribute to quality of life. Lack of accessibility, assumptions, negative behaviours, stress, and negative people (staff, roommates, people in general) were identified as detractors of quality of life. CONCLUSIONS: To continue to make progress in improving the quality of life of individuals with intellectual disabilities, the voice of those with intellectual disabilities is key. The results suggest key areas of focus to make these improvements.
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Deficiência Intelectual , Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , Deficiência Intelectual/psicologia , Adulto , Masculino , Feminino , Pessoa de Meia-Idade , Adulto Jovem , Pessoas com Deficiência Mental/psicologiaRESUMO
BACKGROUND: Emerging data suggest that direct oral anticoagulants may be a suitable choice for anticoagulation for cerebral venous thrombosis (CVT). However, conducting high-quality trials in CVT is challenging as it is a rare disease with low rates of adverse outcomes such as major bleeding and functional dependence. To facilitate the design of future CVT trials, SECRET (Study of Rivaroxaban for Cerebral Venous Thrombosis) assessed (1) the feasibility of recruitment, (2) the safety of rivaroxaban compared with standard-of-care anticoagulation, and (3) patient-centered functional outcomes. METHODS: This was a phase II, prospective, open-label blinded-end point 1:1 randomized trial conducted at 12 Canadian centers. Participants were aged ≥18 years, within 14 days of a new diagnosis of symptomatic CVT, and suitable for oral anticoagulation; they were randomized to receive rivaroxaban 20 mg daily, or standard-of-care anticoagulation (warfarin, target international normalized ratio, 2.0-3.0, or low-molecular-weight heparin) for 180 days, with optional extension up to 365 days. Primary outcomes were annual rate of recruitment (feasibility); and a composite of symptomatic intracranial hemorrhage, major extracranial hemorrhage, or mortality at 180 days (safety). Secondary outcomes included recurrent venous thromboembolism, recanalization, clinically relevant nonmajor bleeding, and functional and patient-reported outcomes (modified Rankin Scale, quality of life, headache, mood, fatigue, and cognition) at days 180 and 365. RESULTS: Fifty-five participants were randomized. The rate of recruitment was 21.3 participants/year; 57% of eligible candidates consented. Median age was 48.0 years (interquartile range, 38.5-73.2); 66% were female. There was 1 primary event (symptomatic intracranial hemorrhage), 2 clinically relevant nonmajor bleeding events, and 1 recurrent CVT by day 180, all in the rivaroxaban group. All participants in both arms had at least partial recanalization by day 180. At enrollment, both groups on average reported reduced quality of life, low mood, fatigue, and headache with impaired cognitive performance. All metrics improved markedly by day 180. CONCLUSIONS: Recruitment targets were reached, but many eligible participants declined randomization. There were numerically more bleeding events in patients taking rivaroxaban compared with control, but rates of bleeding and recurrent venous thromboembolism were low overall and in keeping with previous studies. Participants had symptoms affecting their well-being at enrollment but improved over time. REGISTRATION: URL: https://www. CLINICALTRIALS: gov; Unique identifier: NCT03178864.
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Tromboembolia Venosa , Trombose Venosa , Humanos , Feminino , Adolescente , Adulto , Pessoa de Meia-Idade , Masculino , Rivaroxabana/efeitos adversos , Anticoagulantes/efeitos adversos , Tromboembolia Venosa/induzido quimicamente , Estudos Prospectivos , Estudos de Viabilidade , Qualidade de Vida , Canadá , Hemorragia/induzido quimicamente , Trombose Venosa/tratamento farmacológico , Hemorragias Intracranianas/induzido quimicamente , CefaleiaRESUMO
OBJECTIVE: To examine the trajectory of the Rating of Everyday Arm-use in the Community and Home (REACH) scores over the first-year post-stroke, determine if REACH scores are modified by baseline impairment level and explore the responsiveness of the REACH scale through hypothesis testing. DESIGN: Consecutive sample longitudinal study. SETTING: Participants were recruited from an acute stroke unit and followed up at three, six, and 12 months post-stroke. PARTICIPANTS: Seventy-three participants with upper limb weakness (Shoulder Abduction and Finger Extension score ≤ 8). MAIN MEASURES: The REACH scale is a six-level self-report classification scale that captures how the affected upper limb is being used in one's own environment. The Fugl-Meyer Upper Limb Assessment (FMA-UL), Stroke Upper Limb Capacity Scale (SULCS), accelerometer-based activity count ratio and Global Rating of Change Scale (GRCS) were used to capture upper limb impairment, capacity, and use. RESULTS: The following proportions of participants improved at least one REACH level: 64% from baseline to three months, 37% from three to six months and 13% from six to 12 months post-stroke. The trajectory of REACH scores over time was associated with baseline impairment. Change in REACH had a moderate correlation to change in SULCS and the GRCS but not FMA-UL or the activity count ratio. CONCLUSIONS: Results of hypothesis testing provide preliminary evidence of the responsiveness of the REACH scale. On average, individuals with severe impairment continued to show improvement in use over the first year, while those with mild/moderate impairment plateaued and a small proportion decreased in the early chronic phase.
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Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral , Humanos , Braço , Estudos Longitudinais , Recuperação de Função Fisiológica , Acidente Vascular Cerebral/complicações , Extremidade SuperiorRESUMO
BACKGROUND: Wearable sensor technology can facilitate diagnostics and monitoring of people with upper extremity (UE) paresis after stroke. The purpose of this study is to investigate the perspectives of clinicians, people living with stroke, and their caregivers on an interactive wearable system that detects UE movements and provides feedback. METHODS: This qualitative study used semi-structured interviews relating to the perspectives of a future interactive wearable system including a wearable sensor to capture UE movement and a user interface to provide feedback as the means of data collection. Ten rehabilitation therapists, 9 people with stroke, and 2 caregivers participated in this study. RESULTS: Four themes were identified (1) "Everyone is different" highlighted the need for addressing individual user's rehabilitation goal and personal preference; (2) "The wearable system should identify UE and trunk movements" emphasized that in addition to arm, hand, and finger movements, detecting compensatory trunk movements during UE movements is also of interest; (3) "Both quality and amount of movements are necessary to measure" described the parameters related to how well and how much the user is using their affected UE that participants envisioned the system to monitor; (4) "Functional activities should be practiced by the users" outlined UE movements and activities that are of priority in designing the system. CONCLUSIONS: Narratives from clinicians, people with stroke, and their caregivers offer insight into the design of interactive wearable systems. Future studies examining the experience and acceptability of existing wearable systems from end-users are warranted to guide the adoption of this technology.
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Acidente Vascular Cerebral , Dispositivos Eletrônicos Vestíveis , Humanos , Extremidade Superior , Mãos , Dedos , Acidente Vascular Cerebral/complicaçõesRESUMO
OBJECTIVE: Social prescribing is a complex care model, which aims to address unmet non-medical needs and connect people to community resources. The purpose of this systematic review was to synthesize available evidence from qualitative methods (e.g. interviews or focus groups) on experience, outcomes, and processes for social prescribing and older adults (from the person or provider level). STUDY DESIGN: This was a systematic review using the Joanna Brigg's meta-aggregative approach. METHODS: We searched multiple online databases for peer-reviewed studies, which included older adults aged ≥60 years (group mean age) and social prescribing experience, outcomes, or processes. We included all qualitative or mixed methods designs from all years and languages. Date of the last primary search was March 24, 2022. Two authors used online software to conduct the screening independently and then decided on the final list of included studies via notes and online discussion. RESULTS: We screened 376 citations (after duplicates) and included eight publications. There were 197 older adult participants (59% women), and many people were living with chronic health conditions. Few details were provided for participants' ethnicity, education, and related factors. We created five synthesized findings related to (1) the approach of social prescribing; implementation factors such as (2) relationships, (3) behavior change strategies, and (4) the environment; and (5) older adults' perceived health and psychosocial outcomes. CONCLUSIONS: Despite the limited number of available studies, data provide an overview of people and processes involved with social prescribing, identified research and practice gaps, and possible next steps for implementing and evaluating social prescribing for older adults in primary care.
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Grupos Focais , Interação Social , Idoso , Feminino , Humanos , MasculinoRESUMO
Municipalities and nonprofit organizations play a major role in administrating services that support individuals with disabilities. The purpose of this study was to explore how these organizations responded to the COVID-19 pandemic in regards to service delivery and programming for people with disabilities. This qualitative interpretative description study used semi-structured individual interviews for data collection. Recordings of the interviews were transcribed. Then the transcripts were analyzed qualitatively for themes following an inductive approach. Twenty-six individuals working for nonprofit organization or municipalities participated in the study. Six themes were identified: doing more with less; adapting rather than creating new services; ongoing consultation with stakeholders; feeling successful at adapting the services; being innovative with fundraising and embracing radical change. Flexibility and iterative user-centered approach appeared to be common coping strategies. Remote services were privileged to adapt service delivery during the COVID-19 pandemic.
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COVID-19 , Pessoas com Deficiência , Humanos , Pandemias , Cidades , Organizações sem Fins LucrativosRESUMO
This community-based study explored resilience practices among people living with physical disabilities (i.e., stroke, spinal cord injury, and other physical disabilities) during the COVID-19 pandemic. In this photo elicitation study, during 1:1 interviews, participants shared and described photos that reflected their pandemic-related experiences. Data were analyzed thematically to identify resilience-related practices. Our analysis revealed three themes: (1) reflecting on the importance of family, friends, and community (e.g., recalling past memories and strengthening existing connections); (2) engaging in social and recreational activities (e.g., experiencing the outdoors and gardening); and (3) reframing personal contexts and social environment (e.g., adjusting to new social norms and overcoming physical barriers to navigating safely during the pandemic). The resilience that participants identified encompassed not only individual strategies but also family and community supports. Resilience can be fostered through community initiatives that support more equitable responses to health emergencies for people with disabilities.
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COVID-19 , Pessoas com Deficiência , Humanos , PandemiasRESUMO
Individuals with a moderate to severe traumatic brain injury (TBI) experience substantial changes in their life. This constructivist grounded theory study aimed to develop an explanatory model that explores the impact of changes in social participation and self-identity after sustaining a TBI. Sixteen participants with moderate to severe TBI (mean age = 49.8, 69% male) were recruited, and were on average 16.4 years post-injury (SD = 10.4). Data from semi-structured interviews were analysed thematically. An overarching theme of "living in a reshaped reality" was identified, which depicted how changes in social participation and self-identity influenced ongoing experiences with TBI. Three main themes were generated: (1) "there's nothing that's the same" highlighted the daily challenges individuals faced post-injury, (2) "rebuilding and restarting" described how individuals with TBI navigated through their unfamiliar reality, and (3) "embrace it and run with it" explored participants' reactions towards life with a TBI. An explanatory model was developed, consisting of the overarching theme ("living in a reshaped reality") with the three integrated themes. Future research and clinical practices can build on this understanding to develop programmes to help individuals address their needs in post-injury life.
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Lesões Encefálicas Traumáticas , Participação Social , Feminino , Teoria Fundamentada , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
In some legal and societal circumstances, people freely and capably plan, organize, and precipitate their own death. Drawing on published literature, we critically reflect on how deliberately ending one's own life fits with the current definitions of the concept of occupation. Using an occupational science and occupational therapy theoretical reflection, we argue that deliberately dying can for some people be considered a purposeful and meaningful occupation. Implications for such an occupational therapy practice are discussed: attending to the occupational needs of specific groups of people, reconsidering definitions and conceptual work, advocating for occupational justice in ending life activities, reflecting on ethical conundrums around self-harm activities within the scope of practice, and exploring deliberate death as a purposeful and meaningful occupation. Because deliberately dying is something that some people do, in this article we aim to open a dialogue within the field of occupational science and occupational therapy about this sensitive and potentially controversial issue.
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Terapia Ocupacional , Humanos , OcupaçõesRESUMO
OBJECTIVE: To address a gap between spinal cord injury (SCI) research and practice by rigorously and systematically co-developing integrated knowledge translation (IKT) guiding principles for conducting and disseminating SCI research in partnership with research users. DESIGN: The process was guided by the internationally accepted The Appraisal of Guidelines for REsearch & Evaluation (AGREE) II Instrument for evaluating the development of clinical practice guidelines. SETTING: North American SCI research system (ie, SCI researchers, research users, funders). PARTICIPANTS: The multidisciplinary expert panel (n=17) and end users (n=35) included individuals from a North American partnership of SCI researchers, research users, and funders who have expertise in research partnerships. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Clarity, usefulness, and appropriateness of the principles. RESULTS: Data regarding 125 principles of partnered research were systematically collected from 4 sources (review of reviews, scoping review, interviews, Delphi consensus exercise). A multidisciplinary expert panel held a 2-day meeting to establish consensus, select guiding principles, and draft the guidance. The panel reached 100% consensus on the principles and guidance document. The final document includes a preamble, 8 guiding principles, and a glossary. Survey data showed that the principles and guidance document were perceived by potential end users as clear, useful, and appropriate. CONCLUSIONS: The IKT Guiding Principles represent the first rigorously co-developed, consensus-based guidance to support meaningful SCI research partnerships. The principles are a foundational tool with the potential to improve the relevance and impact of SCI research, mitigate tokenism, and advance the science of IKT.
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Consenso , Pesquisa sobre Serviços de Saúde , Disseminação de Informação , Traumatismos da Medula Espinal/reabilitação , Pesquisa Translacional Biomédica , HumanosRESUMO
Objectives: Loneliness and depression are of increasing concern in long-term care homes made more urgent by viral outbreak isolation protocols. An innovative program called Java Mentorship was developed that engaged community volunteers and resident volunteers (mentors) as a team. The team met weekly, received education, and provided visits and guidance in pairs to socially disengaged residents (mentees). The purpose of this study was to assess the feasibility of conducting a larger study.Method: We conducted a mixed-methods pre-post study to evaluate the program. We collected feasibility data associated with the program implementation, including assessment of the sample and ability to recruit; procedures for data collection; retention, program adherence and acceptability; and residents' responses including loneliness, depression, purpose in life, social identity and sense of belonging outcomes. We enrolled community mentors (n = 65), resident mentors (n = 48) staff facilitators (n = 24) and mentees (n = 74) in 10 Canadian sites.Results: Most feasibility objectives were met, and adherence and acceptability were high. Some resource challenges and low retention rates among resident mentors were noted. We found a 29% reduction in depression scores (p = .048; d = .30) and 15% reduction in loneliness scores (p = .014; d = .23). Purpose in life, social identity and sense of belonging were unchanged. Interviews among participants indicated high acceptability and positive perceptions of the program.Conclusion: The study findings reveal a potential role for mentorship as a viable approach to reducing loneliness and depression in long-term care settings and lay the groundwork for future research.
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Tutoria , Mentores , Canadá , Estudos de Viabilidade , Humanos , Assistência de Longa DuraçãoRESUMO
BACKGROUND: Individuals requiring greater physical assistance to practice walking complete fewer steps in physical therapy during subacute stroke rehabilitation. Powered exoskeletons have been developed to allow repetitious overground gait training for individuals with lower limb weakness. The objective of this study was to determine the efficacy of exoskeleton-based physical therapy training during subacute rehabilitation for walking recovery in non-ambulatory patients with stroke. METHODS: An assessor-blinded randomized controlled trial was conducted at 3 inpatient rehabilitation hospitals. Patients with subacute stroke (< 3 months) who were unable to walk without substantial assistance (Functional Ambulation Category rating of 0 or 1) were randomly assigned to receive exoskeleton-based or standard physical therapy during rehabilitation, until discharge or a maximum of 8 weeks. The experimental protocol replaced 75% of standard physical therapy sessions with individualized exoskeleton-based sessions to increase standing and stepping repetition, with the possibility of weaning off the device. The primary outcome was walking ability, measured using the Functional Ambulation Category. Secondary outcomes were gait speed, distance walked on the 6-Minute Walk Test, days to achieve unassisted gait, lower extremity motor function (Fugl-Meyer Assessment), Berg Balance Scale, Patient Health Questionnaire, Montreal Cognitive Assessment, and 36-Item Short Form Survey, measured post-intervention and after 6 months. RESULTS: Thirty-six patients with stroke (mean 39 days post-stroke) were randomized (Exoskeleton = 19, Usual Care = 17). On intention-to-treat analysis, no significant between-group differences were found in the primary or secondary outcomes at post-intervention or after 6 months. Five participants randomized to the Exoskeleton group did not receive the protocol as planned and thus exploratory as-treated and per-protocol analyses were undertaken. The as-treated analysis found that those adhering to exoskeleton-based physical therapy regained independent walking earlier (p = 0.03) and had greater gait speed (p = 0.04) and 6MWT (p = 0.03) at 6 months; however, these differences were not significant in the per-protocol analysis. No serious adverse events were reported. CONCLUSIONS: This study found that exoskeleton-based physical therapy does not result in greater improvements in walking independence than standard care but can be safely administered at no detriment to patient outcomes. Clinical Trial Registration The Exoskeleton for post-Stroke Recovery of Ambulation (ExStRA) trial was registered at ClinicalTrials.gov (NCT02995265, first registered: December 16, 2016).
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Exoesqueleto Energizado , Transtornos Neurológicos da Marcha , Reabilitação do Acidente Vascular Cerebral , Terapia por Exercício , Humanos , Modalidades de Fisioterapia , Resultado do Tratamento , CaminhadaRESUMO
Pushrim-activated power-assisted wheels (PAPAWs) are assistive technologies that use force sensor data to provide on-demand propulsion assistance to manual wheelchair users. However, available data about kinetic and kinematic of PAPAW use are mainly limited to experiments performed on a treadmill or using a dynamometer. In this work, we performed experiments to gather kinetics of wheelchair propulsion and kinematics of wheelchair motion for a variety of over-ground wheelchair maneuvers with a manual wheelchair with and without PAPAWs. Our findings revealed that using PAPAWs can significantly reduce the propulsion effort and push frequency. Both linear and angular velocities of the wheelchair were significantly increased when using PAPAWs. Less force and push frequency could potentially reduce risk of chronic upper limb injury. Higher linear velocity could be desirable for various daily life activities; however; the increase in the angular velocity could lead to unintended deviations from a desired path. Future research could investigate PAPAW controllers that amplify the desired intentions of users while mitigating any unwanted behaviours.
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Pessoas com Deficiência , Cadeiras de Rodas , Fenômenos Biomecânicos , Desenho de Equipamento , Teste de Esforço , HumanosRESUMO
IMPORTANCE: Scanning the environment is critical for driving safety. The ScanCourse is a functional assessment that assesses a person's ability to scan the environment for visual information while in motion. Measurement properties for the ScanCourse have been reported; however, its predictive validity is unknown. OBJECTIVE: To determine the predictive validity of the ScanCourse for on-road driving performance and establish clinical cutoff scores. DESIGN: Retrospective chart reviews were conducted over a 6-mo period. SETTING: Four Canadian driver rehabilitation programs. PARTICIPANTS: Charts from patients with neurological or vision conditions were eligible if they contained ScanCourse and on-road driving evaluation results between September 1, 2008, and August 30, 2018. Three hundred twenty-five charts were included for analysis. OUTCOMES AND MEASURES: Area under the curve (AUC) analysis was used to determine the predictive validity of ScanCourse scores for on-road outcomes; cutoff scores were established by optimizing sensitivity and specificity. RESULTS: The ScanCourse had an AUC of .702. The optimal cutoff score was 18/20 with a sensitivity of 76.7% and a specificity of 47.1%. CONCLUSIONS AND RELEVANCE: Assessing the scanning abilities of at-risk drivers who intend to return to driving after sustaining an injury can help identify safety risks and inform interventions. The ScanCourse was found to have acceptable discriminatory ability for on-road driving performance. This study provides evidence supporting its continued use as a screening tool to assess driver fitness with an identified optimal cutoff score for clinical use. WHAT THIS ARTICLE ADDS: Measuring the predictive ability of the ScanCourse assessment in relation to on-road driving performance provides occupational therapists with an evidence-based clinical tool to assist with screening fitness to drive among at-risk people.
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Condução de Veículo , Terapeutas Ocupacionais , Exame para Habilitação de Motoristas , Canadá , Exercício Físico , Humanos , Estudos Retrospectivos , Sensibilidade e EspecificidadeRESUMO
The aim of this study was to understand the mobility experiences of mobility device users regarding the environmental and social barriers and facilitators in their community and to discuss the benefits and challenges of using photovoice, as a participatory methodology, to increase social participation for people with disabilities. Photovoice was used with mobility device users (n = 70) in two different locations in Canada. The participants took pictures for two weeks and then participated in individual interviews and focus group sessions to discuss their photographs. The participants took over 1,000 pictures that were grouped into five themes around social participation and accessibility. They chose the most illustrative pictures to share in an exhibit to create a dialogue with different stakeholders. Using photovoice offered many benefits such as allowing the participants to be equal partners of the research and made their voices heard, but also presented disability and study-related challenges.
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Pessoas com Deficiência , Inclusão Social , Canadá , Grupos Focais , Humanos , Participação SocialRESUMO
Arthrogryposis multiplex congenita (AMC) is considered a rare disorder resulting in multiple congenital contractures in two or more areas. Considerable literature is available on managing the contractures during an affected child's development but little information is available to those managing these ongoing issues in adulthood. Due to the heterogeneity etiological factors and presentation of AMC, and the small sample sizes of previous studies, it has been difficult to generalize results to the adult population. This current study presents the several steps taken to create an international AMC database for adults to populate with their own data over time. The methods included a scoping review of the literature for valid and reliable outcome measures used for AMC, a Delphi methodology to create the database with a team of clinicians, researchers and patients, a Beta testing of the database, and a final launch of the Adult AMC Registry. This registry includes 48 nonstandardized questions and 12 standardized questionnaires. It takes 35-45 min for a participant to complete. A shorter version will be created for participants to complete for years 2 and 3, followed by this longer version every 4 years. The protocol for referring English-speaking patients and access to the registry is provided. Data will be reviewed every year to ensure quality. The registry will be maintained for a minimum of 10 years and data will be comprehensively analyzed every 5 years. Our goal is to have 500 adults with AMC from around the world as participants.
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Artrogripose/epidemiologia , Adulto , Humanos , Internet , Sistema de Registros , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: To examine the change over 1 year in the burden, wheelchair skills, social support, social participation, and mental health of family caregivers providing assistance to older adult powered wheelchair users. DESIGN: Longitudinal study. SETTING: Community. PARTICIPANTS: Participants (N=35) included family caregivers (mean age ± SD=63.7±10.2y) who provided at least 2 hours of general care per week for a powered wheelchair user. INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: The Power Mobility Caregiver Assistive Technology Outcome Measure (frequency of care and subjective burden), the Wheelchair Skills Test Questionnaire for caregivers (wheelchair skills), the Interpersonal Support Evaluation List-6 (social support), the Late-Life Function and Disability Instrument (social participation), the Hospital Anxiety and Depression Scale (mental health). Measures were taken at baseline, 1, 3, 6, and 12 months. Descriptive statistics were calculated, and a linear mixed model was used to assess changes over time in the outcomes. RESULTS: The results showed that the caregivers helped on average with 3 powered wheelchair-related activities and 10 other caregiving activities. They also experienced moderate subjective burden and social participation and were within the normal range for depression and anxiety. Moreover, those outcomes remained stable over the 1-year study period. However, the wheelchair skills scores showed significant changes over time, as the scores improved during the first 6 months of the study. CONCLUSION: Given that previous research indicated that subjective burden tends to decline over time among caregivers, the findings of stability in this study may reflect increasing needs among this population of caregivers, who may benefit from additional support and interventions. This would need further consideration.
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Cuidadores/psicologia , Pessoas com Deficiência/psicologia , Cadeiras de Rodas/psicologia , Idoso , Ansiedade/psicologia , Canadá , Efeitos Psicossociais da Doença , Depressão/psicologia , Fontes de Energia Elétrica , Desenho de Equipamento , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Participação Social , Apoio Social , Inquéritos e QuestionáriosRESUMO
With decreasing inpatient lengths of stay following spinal cord injury (SCI), newly injured patients may be discharged into the community without the self-management skills needed to prevent secondary conditions. A mobile app was developed to facilitate self-management skills following SCI in the inpatient rehabilitation and early community settings. The objective of this study was to explore patients' perspectives on the usability of this self-management app. A mixed-methods study design was implemented. The app was trialed at a local rehabilitation centre with 20 inpatient participants who experienced a SCI. They received mobile app training sessions throughout their inpatient rehabilitation. A thematic analysis was performed on qualitative data from post-discharge exit questionnaires and researchers' field notes. Quantitative data (in the form of participants' tool usage data and self-reported system usability scale scores) were collected at discharge and 3 months post-discharge. Three main themes emerged from the qualitative analysis: (1) being accessible to users (i.e., being easy to adopt and compatible with assistive technologies), (2) being intuitive to navigate (i.e., incorporating a simple app layout and a system of alert notifications), and (3) offering users flexibility (i.e., providing users with control over their data). The mobile app received above average mean system usability scale scores, both at discharge (78.1/100) and 3 months post-discharge (71.6/100). Given that participants found the app acceptable for use in inpatient rehabilitation and following discharge into the community, further testing is warranted to explore its efficacy in preventing secondary complications.
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Aplicativos Móveis , Autogestão/métodos , Traumatismos da Medula Espinal/reabilitação , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto JovemRESUMO
With decreasing inpatient rehabilitation lengths of stay, there may be a greater risk of spinal cord injury (SCI) populations being discharged into the community without the self-management skills needed to prevent secondary complications. Recent advancements in mobile health has made mobile apps a feasible method of delivering population-based, self-management interventions to address SCI-specific secondary complications. The objective of this study is to describe stakeholder perspectives on the development of a functional mobile app to facilitate self-management skills needed to prevent secondary complications following recent SCI during inpatient rehabilitation. A user-centered design approach was used that involved an evolving mobile app and the collection of prospective qualitative data. Stakeholders from three groups were enrolled in the study: individuals admitted for rehabilitation following SCI (n = 20) and informal (n = 7) and formal (n = 48) caregivers. Iterative feedback was gathered from rehabilitation inpatients during ongoing interactions and via post-discharge exit questionnaires, from informal caregivers via one-on-one interviews, and from formal caregivers via series of focus groups at various phases throughout the design process. Three main themes emerged from the analysis: (1) being individualized and user friendly (i.e., developing an app that is simple and easy to use to facilitate universal uptake), (2) targeting goals to promote self-management (i.e., adopting self-management skills relative to personal goals and confidence), and (3) increasing participation and support-seeking to facilitate lifestyle change (i.e., encouraging leisure activities to facilitate community integration). Key stakeholder perspectives contributed to the development of a self-management mobile app that will be evaluated in future research.