cometadata/datacite-titles-descriptions-related-identifiers huggingface dataset:
DOI: 10.6084/m9.figshare.16618204.v1
title: The lived experience of carers who assist people with disability in Ernakulam, Kerala, India

description: Family members are preferred providers of care for people with disability in India. Despite this, research which evaluates the impact of caregiving is limited. This qualitative study provides a comprehensive, in-depth exploration of the lived experience of carers who provide assistance to persons with a disability in Southwest India. In this qualitative study, 20 carers who assist persons with disability were purposively selected to undertake semi-structured interviews across a variety of domains. Data analysis was informed by Attride-Stirling’s thematic network analysis. Five global themes were identified which included; carers commitment to caring; concurrent demands of caregiving; mental and physical health of carers; networks and sources of non-financial support; and finances – strains and supports. This study provides an in-depth exploration of the lived experience of carers in Kerala, India which will inform the future development of interventions to assist primary carers.Implications for rehabilitationFamily members are preferred providers of care for people with disability in India.By understanding the issues that affect carers who assist people with disability, it is possible to develop more effective, targeted, and sustainable interventions, that meet the needs of carers and alleviate some of their burden.Improving the health and wellbeing of carers needs to be urgently addressed in order to improve outcomes for those with disability – whom they care for. Family members are preferred providers of care for people with disability in India. By understanding the issues that affect carers who assist people with disability, it is possible to develop more effective, targeted, and sustainable interventions, that meet the needs of carers and alleviate some of their burden. Improving the health and wellbeing of carers needs to be urgently addressed in order to improve outcomes for those with disability – whom they care for.
DOI: 10.6084/m9.figshare.16628908.v1
title: Physical dependence and urinary catheters both strongly relate to physical inactivity in adults during hospital stay: a cross-sectional, observational study

description: To determine which factors are associated with physical inactivity in hospitalized adults of all ages. A cross-sectional sample of 114 adults admitted to a gastrointestinal surgery, internal medicine or cardiology hospital ward (median age 60, length of stay 13 days) were observed during one random day from 8 am to 8 pm using wireless accelerometers and behavioral mapping protocols. Factors (e.g., comorbidities, self-efficacy, independence in mobility, functional restraints) were collected from medical records, surveys, and observations. Patients were physically active for median(IQR) 26 (13–52.3) min and were observed to lie in bed for 67.3%, sit for 25.2%, stand for 2.5%, and walk for 5.0% of the time. Multivariable regression analysis revealed that physical inactivity was 159.87% (CI = 89.84; 255.73) higher in patients dependent in basic mobility, and 58.88% (CI = 10.08; 129.33) higher in patients with a urinary catheter (adjusted <i>R</i><sup>2</sup> = 0.52). The fit of our multivariable regression analysis did not improve after adding hospital ward to the analysis (<i>p</i> &gt; 0.05). Independence in mobility and urine catheter presence are two important factors associated with physical inactivity in hospitalized adults of all ages, and these associations do not differ between hospital wards. Routine assessments of both factors may therefore help to identify physically inactive patients throughout the hospital.IMPLICATIONS FOR REHABILITATIONHealthcare professionals should be aware that physical inactivity during hospital stay may result into functional decline.Regardless of which hospital ward patients are admitted to, once patients require assistance in basic mobility or have a urinary catheter they are at risk of physical inactivity during hospital stay.Implementing routine assessments on the independence of basic mobility and urine catheter presence may therefore assist healthcare professionals in identifying physically inactive patients before they experience functional decline. Healthcare professionals should be aware that physical inactivity during hospital stay may result into functional decline. Regardless of which hospital ward patients are admitted to, once patients require assistance in basic mobility or have a urinary catheter they are at risk of physical inactivity during hospital stay. Implementing routine assessments on the independence of basic mobility and urine catheter presence may therefore assist healthcare professionals in identifying physically inactive patients before they experience functional decline.
DOI: 10.6084/m9.figshare.15205500
title: Effectiveness of a group resilience intervention for people with multiple sclerosis delivered <i>via</i> frontline services

description: This study aims to evaluate the effectiveness of an Acceptance and Commitment Therapy-based group resilience intervention (The REsilience and Activities for every DaY program, READY) delivered to people with MS (PwMS) <i>via</i> frontline Italian services. This is a single-arm longitudinal study (with a nested qualitative study). READY is composed of seven weekly in-person sessions (2.5-h each) plus a booster session five weeks later. Data were collected immediately before the program, after the booster session, and at 3-months follow-up. Thirty-three READY groups (237 participants) were run by thirty-three trained psychologists. Participants improved in resilience (primary outcome), anxiety, depression, stress, health-related quality of life (HRQoL), and psychological flexibility and associated processes (acceptance, defusion, and values). Improvements on most outcomes occurred post-intervention and were maintained at a 3-month follow-up. No demographic or illness variables predicted these improvements. Psychological flexibility mediated improvements in resilience, anxiety, depression, stress, and HRQoL. Qualitative data confirmed READY feasibility and the positive psychological impacts on participants. Study findings support READY effectiveness with PwMS, its broad applicability in this population, and its delivery through frontline services.IMPLICATIONS FOR REHABILITATIONREADY for MS is a highly structured, brief manualized group intervention.It is effective in improving participants’ psychological functioning (resilience, anxiety, depression, stress, HRQoL, psychological flexibility, and related ACT processes).Psychological flexibility mediated the improvements in resilience, anxiety, depression, stress, HRQoL.READY can be effectively delivered through frontline services for PwMS without limitation in terms of participants’ demographic and illness characteristics. READY for MS is a highly structured, brief manualized group intervention. It is effective in improving participants’ psychological functioning (resilience, anxiety, depression, stress, HRQoL, psychological flexibility, and related ACT processes). Psychological flexibility mediated the improvements in resilience, anxiety, depression, stress, HRQoL. READY can be effectively delivered through frontline services for PwMS without limitation in terms of participants’ demographic and illness characteristics.
DOI: 10.6084/m9.figshare.16604505.v1
title: How does a systematic tuning protocol for ankle foot orthosis–footwear combinations affect gait in children in cerebral palsy?

description: To investigate the effects of a systematic tuning protocol for ankle foot orthosis footwear combinations (AFO-FC) using incrementing heel height on gait in children with cerebral palsy (CP). Eighteen children with CP (10.8 ± 3 years, Gross Motor Function Classification System (GMFCS) I–II) underwent 3D gait analysis on a treadmill, while the AFO heel surface was systematically incremented with wedges. Children were subdivided based on their gait pattern, i.e., knee hyperextension (EXT) and excessive knee flexion (FLEX). Outcome measures included sagittal hip and knee angles and moments, shank to vertical angle (SVA), foot to horizontal angle, and gait profile score (GPS). For both groups, incrementing heel height resulted in increased knee flexion, more inclined SVA, and increased knee extension moments. This resulted in gait improvements for some children of the EXT-group, but not in FLEX. High variation was found between individuals and within-subject effects were not always consistent for kinematic and kinetics. A systematic AFO-FC tuning protocol using incremented heel height can be effective to improve gait in children with CP walking with EXT. The current results emphasise the importance of including kinematics as well as kinetics of multiple instances throughout the gait cycle for reliable interpretation of the effect of AFO tuning on gait.Implications for rehabilitationA systematic ankle foot orthosis footwear combinations (AFO-FC) tuning protocol using incremented heel height can improve gait in children walking with knee hyperextension.Tuning results in changes throughout the gait cycle.Little evidence is found for an optimal SVA of 10–12° at midstance.For clinical interpretation, both joint kinematic and kinetic parameters should be considered throughout the gait cycle and evaluation should not be based on SVA only. A systematic ankle foot orthosis footwear combinations (AFO-FC) tuning protocol using incremented heel height can improve gait in children walking with knee hyperextension. Tuning results in changes throughout the gait cycle. Little evidence is found for an optimal SVA of 10–12° at midstance. For clinical interpretation, both joint kinematic and kinetic parameters should be considered throughout the gait cycle and evaluation should not be based on SVA only.
DOI: 10.6084/m9.figshare.16628908
title: Physical dependence and urinary catheters both strongly relate to physical inactivity in adults during hospital stay: a cross-sectional, observational study

description: To determine which factors are associated with physical inactivity in hospitalized adults of all ages. A cross-sectional sample of 114 adults admitted to a gastrointestinal surgery, internal medicine or cardiology hospital ward (median age 60, length of stay 13 days) were observed during one random day from 8 am to 8 pm using wireless accelerometers and behavioral mapping protocols. Factors (e.g., comorbidities, self-efficacy, independence in mobility, functional restraints) were collected from medical records, surveys, and observations. Patients were physically active for median(IQR) 26 (13–52.3) min and were observed to lie in bed for 67.3%, sit for 25.2%, stand for 2.5%, and walk for 5.0% of the time. Multivariable regression analysis revealed that physical inactivity was 159.87% (CI = 89.84; 255.73) higher in patients dependent in basic mobility, and 58.88% (CI = 10.08; 129.33) higher in patients with a urinary catheter (adjusted <i>R</i><sup>2</sup> = 0.52). The fit of our multivariable regression analysis did not improve after adding hospital ward to the analysis (<i>p</i> &gt; 0.05). Independence in mobility and urine catheter presence are two important factors associated with physical inactivity in hospitalized adults of all ages, and these associations do not differ between hospital wards. Routine assessments of both factors may therefore help to identify physically inactive patients throughout the hospital.IMPLICATIONS FOR REHABILITATIONHealthcare professionals should be aware that physical inactivity during hospital stay may result into functional decline.Regardless of which hospital ward patients are admitted to, once patients require assistance in basic mobility or have a urinary catheter they are at risk of physical inactivity during hospital stay.Implementing routine assessments on the independence of basic mobility and urine catheter presence may therefore assist healthcare professionals in identifying physically inactive patients before they experience functional decline. Healthcare professionals should be aware that physical inactivity during hospital stay may result into functional decline. Regardless of which hospital ward patients are admitted to, once patients require assistance in basic mobility or have a urinary catheter they are at risk of physical inactivity during hospital stay. Implementing routine assessments on the independence of basic mobility and urine catheter presence may therefore assist healthcare professionals in identifying physically inactive patients before they experience functional decline.
DOI: 10.6084/m9.figshare.16604505
title: How does a systematic tuning protocol for ankle foot orthosis–footwear combinations affect gait in children in cerebral palsy?

description: To investigate the effects of a systematic tuning protocol for ankle foot orthosis footwear combinations (AFO-FC) using incrementing heel height on gait in children with cerebral palsy (CP). Eighteen children with CP (10.8 ± 3 years, Gross Motor Function Classification System (GMFCS) I–II) underwent 3D gait analysis on a treadmill, while the AFO heel surface was systematically incremented with wedges. Children were subdivided based on their gait pattern, i.e., knee hyperextension (EXT) and excessive knee flexion (FLEX). Outcome measures included sagittal hip and knee angles and moments, shank to vertical angle (SVA), foot to horizontal angle, and gait profile score (GPS). For both groups, incrementing heel height resulted in increased knee flexion, more inclined SVA, and increased knee extension moments. This resulted in gait improvements for some children of the EXT-group, but not in FLEX. High variation was found between individuals and within-subject effects were not always consistent for kinematic and kinetics. A systematic AFO-FC tuning protocol using incremented heel height can be effective to improve gait in children with CP walking with EXT. The current results emphasise the importance of including kinematics as well as kinetics of multiple instances throughout the gait cycle for reliable interpretation of the effect of AFO tuning on gait.Implications for rehabilitationA systematic ankle foot orthosis footwear combinations (AFO-FC) tuning protocol using incremented heel height can improve gait in children walking with knee hyperextension.Tuning results in changes throughout the gait cycle.Little evidence is found for an optimal SVA of 10–12° at midstance.For clinical interpretation, both joint kinematic and kinetic parameters should be considered throughout the gait cycle and evaluation should not be based on SVA only. A systematic ankle foot orthosis footwear combinations (AFO-FC) tuning protocol using incremented heel height can improve gait in children walking with knee hyperextension. Tuning results in changes throughout the gait cycle. Little evidence is found for an optimal SVA of 10–12° at midstance. For clinical interpretation, both joint kinematic and kinetic parameters should be considered throughout the gait cycle and evaluation should not be based on SVA only.
DOI: 10.6084/m9.figshare.16779148
title: Characteristics and impacts of community aphasia group facilitation: a systematic scoping review

description: Community aphasia groups (CAGs) can provide a range of benefits to people with aphasia and support long-term psychosocial wellbeing. However, the dominant speech-pathologist-led service delivery model is inherently limited in scope. Peer-led groups hold potential as a sustainable and empowering extension of this traditional model. The implementation of peer-led models likely requires targeted training and support, however little is known about the characteristics and impacts of CAG facilitation. This study reviews the literature on CAGs and their facilitation. We conducted a scoping review on this topic. One hundred and seventy-seven texts were included, reporting on a heterogeneous range of activities. Most texts reported on speech-pathologist-led groups, however, a range of alternative models were also represented. While no studies directly compared the impacts of different facilitation models, some comparative benefits could be drawn from the literature. Facilitation was perceived as complex and challenging, and significant gaps were identified in the training of facilitators. Ten qualitative studies investigated characteristics and impacts of facilitator behaviours, providing a useful foundation for future development of training and evaluation tools. Further investigation into alternative facilitation models and facilitator training needs will likely support the proliferation of high-quality CAGs.Implications for RehabilitationCommunity aphasia groups (CAGs) play an important role in supporting identity and wellbeing for individuals with chronic aphasia.The traditional speech-pathology led model of group service delivery is limited in scope; the addition of peer- and volunteer-led CAGs may facilitate access to groups and meet a range of different needs for individuals with aphasia.CAG facilitation is a complex and challenging task, likely requiring specialised training, however, this has not been widely available to facilitators.The development of specialised facilitator training will likely support the proliferation of sustainable and high-quality CAGs. Community aphasia groups (CAGs) play an important role in supporting identity and wellbeing for individuals with chronic aphasia. The traditional speech-pathology led model of group service delivery is limited in scope; the addition of peer- and volunteer-led CAGs may facilitate access to groups and meet a range of different needs for individuals with aphasia. CAG facilitation is a complex and challenging task, likely requiring specialised training, however, this has not been widely available to facilitators. The development of specialised facilitator training will likely support the proliferation of sustainable and high-quality CAGs.
DOI: 10.6084/m9.figshare.16779148.v2
title: Characteristics and impacts of community aphasia group facilitation: a systematic scoping review

description: Community aphasia groups (CAGs) can provide a range of benefits to people with aphasia and support long-term psychosocial wellbeing. However, the dominant speech-pathologist-led service delivery model is inherently limited in scope. Peer-led groups hold potential as a sustainable and empowering extension of this traditional model. The implementation of peer-led models likely requires targeted training and support, however little is known about the characteristics and impacts of CAG facilitation. This study reviews the literature on CAGs and their facilitation. We conducted a scoping review on this topic. One hundred and seventy-seven texts were included, reporting on a heterogeneous range of activities. Most texts reported on speech-pathologist-led groups, however, a range of alternative models were also represented. While no studies directly compared the impacts of different facilitation models, some comparative benefits could be drawn from the literature. Facilitation was perceived as complex and challenging, and significant gaps were identified in the training of facilitators. Ten qualitative studies investigated characteristics and impacts of facilitator behaviours, providing a useful foundation for future development of training and evaluation tools. Further investigation into alternative facilitation models and facilitator training needs will likely support the proliferation of high-quality CAGs.Implications for RehabilitationCommunity aphasia groups (CAGs) play an important role in supporting identity and wellbeing for individuals with chronic aphasia.The traditional speech-pathology led model of group service delivery is limited in scope; the addition of peer- and volunteer-led CAGs may facilitate access to groups and meet a range of different needs for individuals with aphasia.CAG facilitation is a complex and challenging task, likely requiring specialised training, however, this has not been widely available to facilitators.The development of specialised facilitator training will likely support the proliferation of sustainable and high-quality CAGs. Community aphasia groups (CAGs) play an important role in supporting identity and wellbeing for individuals with chronic aphasia. The traditional speech-pathology led model of group service delivery is limited in scope; the addition of peer- and volunteer-led CAGs may facilitate access to groups and meet a range of different needs for individuals with aphasia. CAG facilitation is a complex and challenging task, likely requiring specialised training, however, this has not been widely available to facilitators. The development of specialised facilitator training will likely support the proliferation of sustainable and high-quality CAGs.
DOI: 10.6084/m9.figshare.16563779
title: Rethinking early intervention rehabilitation services for children with motor difficulties: engaging stakeholders in the conceptualization of telerehabilitation primary care

description: Rehabilitation services for children with mild motor difficulties are limited. Telehealth could be a novel avenue through which to provide these services. With the input of various stakeholder groups, this study aimed to develop a logic model for a new primary care telerehabilitation intervention and to identify influencing implementation factors. A participatory research design was used. A logic model, developed in consultation with five healthcare managers, was discussed with four stakeholder groups. Focus groups were conducted with clinicians (<i>n</i> = 9), pediatric healthcare managers (<i>n</i> = 5), and technology information consultants (<i>n</i> = 2), while parents (<i>n</i> = 4) were interviewed to explore their perceptions of the proposed intervention, and factors influencing implementation. Transcribed discussions were analyzed using reflexive thematic analysis. Stakeholders supported the delivery of telerehabilitation services for children with mild motor difficulties. Although agreement was generated for each logic model component, important recommendations were voiced related to service relevance and sustainability, parent and community capacity building, and platform dependability, security, and support. Identified factors influencing the implementation encompassed consumer, provider, technological, systemic and contextual barriers and facilitators. Strategies to address them were also suggested. This study demonstrates the value of, and a process to engage stakeholders in the designing of pediatric telerehabilitation services and its implementation.IMPLICATIONS FOR PRACTICEPediatric telerehabilitation service are complex interventions which operate in complicate systems.Designing telerehabilitation services with stakeholders is recommended, yet how to do so often not clear.This study demonstrated that the development of a logic model can provide a systematic framework to helps guide the co-design process with stakeholders.Resulting recommendation underscored a broader vision for the intervention and identified crucial factors and strategies required for its successful implementation and sustainability. Pediatric telerehabilitation service are complex interventions which operate in complicate systems. Designing telerehabilitation services with stakeholders is recommended, yet how to do so often not clear. This study demonstrated that the development of a logic model can provide a systematic framework to helps guide the co-design process with stakeholders. Resulting recommendation underscored a broader vision for the intervention and identified crucial factors and strategies required for its successful implementation and sustainability.