cometadata/datacite-titles-descriptions-related-identifiers huggingface dataset:
DOI: 10.6084/m9.figshare.24069640.v1
title: How do parents frame their engagement experience in early intervention? A grounded theory study

description: Parent and therapist engagement and partnership are critical in early intervention physiotherapy and occupational therapy for infants with cerebral palsy to improve outcomes. The main aim of this study was to understand how parents perceive their engagement experience in early intervention over time. Grounded theory methodology was used. Twenty parents of diverse backgrounds participated in 22 interviews (including some repeated longitudinally) to reflect on their engagement experience within the context of early intervention community services provided in the UK NHS. The findings highlight how parents’ perspectives of their engagement in EI change according to critical circumstances, including their preceding neonatal trauma, the at-risk CP label, firmer diagnosis of CP and their child’s response to intervention. We theorise that this disrupted transition experience to parenthood becomes part of parental framing (or sense-making) of their engagement in EI. Overlapping frames of uncertainty, pursuit and transformation capture and explain nuances in parents’ engagement patterns within EI over time. This theorising has implications for early intervention therapists in how they engage in the lives of families and partner with parents to support healthier parental transition, wellbeing and subsequent improved infant outcomes. New insights are provided into how recent advances to prognostic practices for infants with cerebral palsy affect parental perspectives and their engagement experience in early interventionThe paper’s organising concepts support a clearer understanding for early intervention practitioners of this complex parent experienceEarly intervention practitioners are encouraged to reflect upon their practice as they engage in families’ lives and partner with parents during this challenging period to optimise outcomes New insights are provided into how recent advances to prognostic practices for infants with cerebral palsy affect parental perspectives and their engagement experience in early intervention The paper’s organising concepts support a clearer understanding for early intervention practitioners of this complex parent experience Early intervention practitioners are encouraged to reflect upon their practice as they engage in families’ lives and partner with parents during this challenging period to optimise outcomes
DOI: 10.6084/m9.figshare.23822314.v1
title: Effectiveness of kinesio taping for chronic stroke patients: a systematic review with meta-analysis

description: Kinesio taping (KT) is an approach that has been used in the rehabilitation of patients with chronic stroke. The aim of this review is to evaluate the effectiveness of KT alone or combined with other interventions for patients with chronic stroke. The search was performed on CENTRAL, EMBASE, PEDro, and five other databases and two trial registries up to July 2022. We included randomized controlled trials that evaluated the effectiveness of KT compared to control interventions. The primary outcomes were upper limb function and gait. We assessed the risk of bias in the included studies using the PEDro scale. The certainty of the evidence was assessed using the GRADE approach. We included 14 RCTs undertaken in six different countries. PEDro score ranged from 4 to 9 points. There is very-low certainty evidence that KT has no effect on gait, balance, and postural control. We found very-low certainty evidence of a slightly benefit when used in addition to other therapies for gait, balance and postural control, and pain intensity. Our study findings show KT does not have enough robust evidence for improving upper limb function, gait, balance and postural control, and pain intensity in chronic stroke patients. Kinesio taping (KT) is a method that has gained popularity among some health professionals to treat patients poststroke.There is very-low certainty evidence that KT alone has no effect on gait, balance and postural control compared to no treatment.There is very-low certainty evidence that KT plus other therapies may be slightly beneficial for gait, balance and postural control, and pain intensity intervention.Only one study reported there were no adverse events such as skin reactions or local ulceration for patients poststroke. Kinesio taping (KT) is a method that has gained popularity among some health professionals to treat patients poststroke. There is very-low certainty evidence that KT alone has no effect on gait, balance and postural control compared to no treatment. There is very-low certainty evidence that KT plus other therapies may be slightly beneficial for gait, balance and postural control, and pain intensity intervention. Only one study reported there were no adverse events such as skin reactions or local ulceration for patients poststroke.
DOI: 10.6084/m9.figshare.23951267.v1
title: Combined rehabilitation and palliative care interventions for patients with life-threatening diseases – PREGOAL. A scoping review of intervention programme goals

description: WHO recommends integrating rehabilitation into palliative care when providing services for people with life-threatening conditions. Recently, there has been increasing interest in exploring how rehabilitation and palliative care approaches could be combined. The aim of this study was to map and discuss the goals of intervention programmes that combine rehabilitation and palliative care. A scoping review was performed. The electronic databases MEDLINE, EMBASE, and CINAHL were searched for papers published between January 2014 and September 2022. Papers were considered eligible if the participants in question had a life-threatening disease and if interventions included both rehabilitation and palliative care. All study types were included. Ten papers describing five interventions were included. Qualitative goals were narratively described, and quantitative goals were analysed according to the International Classification of Functioning, Disability and Health, and the Total Pain framework. Findings showed an overall focus on functioning and quality of life. Further analysis indicated an emphasis on physical and psychological dimensions. Social participation, and the social and spiritual dimensions were rarely evaluated. This review indicates that goals relative to social participation, the social and spiritual dimensions, and the patient’s own goals may well be overlooked as points of orientation for interventions. There is an increasing interest in combining palliative care and rehabilitation approaches in clinical work.When rehabilitation and palliative care are combined, goals may be overlooked, and the patient’s own goals can be used as a point of orientation for interventions.Future practice should pay special attention to subjective goals, social participation, and the social and spiritual dimensions when combining rehabilitation and palliative care. There is an increasing interest in combining palliative care and rehabilitation approaches in clinical work. When rehabilitation and palliative care are combined, goals may be overlooked, and the patient’s own goals can be used as a point of orientation for interventions. Future practice should pay special attention to subjective goals, social participation, and the social and spiritual dimensions when combining rehabilitation and palliative care.
DOI: 10.6084/m9.figshare.23898069
title: Adaptation and content validation of a patient-reported measure of treatment burden for use in stroke survivors: the patient experience with treatment and self-management in stroke (PETS-stroke) measure

description: Stroke survivors often live with significant treatment burden yet our ability to examine this is limited by a lack of validated measurement instruments. We aimed to adapt the 60-item, 12-domain Patient Experience with Treatment and Self-Management (PETS) (version 2.0, English) patient-reported measure to create a stroke-specific measure (PETS-stroke) and to conduct content validity testing with stroke survivors. Step 1 – Adaptation of PETS to create PETS-stroke: a conceptual model of treatment burden in stroke was utilised to amend, remove or add items. Step 2 - Content validation: Fifteen stroke survivors in Scotland were recruited through stroke groups and primary care. Three rounds of five cognitive interviews were audio recorded and transcribed. Framework analysis was used to explore importance/relevance/clarity of PETS-stroke content. COSMIN reporting guidelines were followed. The adapted PETS-stroke had 34 items, spanning 13 domains; 10 items unchanged from PETS, 6 new and 18 amended. Interviews (<i>n</i> = 15) resulted in further changes to 19 items, including: instructions; wording; item location; answer options; and recall period. PETS-stroke has content that is relevant, meaningful and comprehensible to stroke survivors. Content validity and reliability testing are now required. The validated tool will aid testing of tailored interventions to lessen treatment burden. Treatment burden is reported by stroke survivors but no stroke-specific measure of treatment burden exists.We adapted an existing measure of treatment burden for use in multimorbid patients (PETS) to create a stroke specific version (PETS-stroke).The items in PETS-stroke are relevant and meaningful to people with stroke.Further testing will examine construct validity, reliability, and useability.This measure will be useful in future RCTs to measure treatment burden and to identify stroke patients who are at high risk of treatment burden. Treatment burden is reported by stroke survivors but no stroke-specific measure of treatment burden exists. We adapted an existing measure of treatment burden for use in multimorbid patients (PETS) to create a stroke specific version (PETS-stroke). The items in PETS-stroke are relevant and meaningful to people with stroke. Further testing will examine construct validity, reliability, and useability. This measure will be useful in future RCTs to measure treatment burden and to identify stroke patients who are at high risk of treatment burden.
DOI: 10.6084/m9.figshare.23898069.v1
title: Adaptation and content validation of a patient-reported measure of treatment burden for use in stroke survivors: the patient experience with treatment and self-management in stroke (PETS-stroke) measure

description: Stroke survivors often live with significant treatment burden yet our ability to examine this is limited by a lack of validated measurement instruments. We aimed to adapt the 60-item, 12-domain Patient Experience with Treatment and Self-Management (PETS) (version 2.0, English) patient-reported measure to create a stroke-specific measure (PETS-stroke) and to conduct content validity testing with stroke survivors. Step 1 – Adaptation of PETS to create PETS-stroke: a conceptual model of treatment burden in stroke was utilised to amend, remove or add items. Step 2 - Content validation: Fifteen stroke survivors in Scotland were recruited through stroke groups and primary care. Three rounds of five cognitive interviews were audio recorded and transcribed. Framework analysis was used to explore importance/relevance/clarity of PETS-stroke content. COSMIN reporting guidelines were followed. The adapted PETS-stroke had 34 items, spanning 13 domains; 10 items unchanged from PETS, 6 new and 18 amended. Interviews (<i>n</i> = 15) resulted in further changes to 19 items, including: instructions; wording; item location; answer options; and recall period. PETS-stroke has content that is relevant, meaningful and comprehensible to stroke survivors. Content validity and reliability testing are now required. The validated tool will aid testing of tailored interventions to lessen treatment burden. Treatment burden is reported by stroke survivors but no stroke-specific measure of treatment burden exists.We adapted an existing measure of treatment burden for use in multimorbid patients (PETS) to create a stroke specific version (PETS-stroke).The items in PETS-stroke are relevant and meaningful to people with stroke.Further testing will examine construct validity, reliability, and useability.This measure will be useful in future RCTs to measure treatment burden and to identify stroke patients who are at high risk of treatment burden. Treatment burden is reported by stroke survivors but no stroke-specific measure of treatment burden exists. We adapted an existing measure of treatment burden for use in multimorbid patients (PETS) to create a stroke specific version (PETS-stroke). The items in PETS-stroke are relevant and meaningful to people with stroke. Further testing will examine construct validity, reliability, and useability. This measure will be useful in future RCTs to measure treatment burden and to identify stroke patients who are at high risk of treatment burden.
DOI: 10.6084/m9.figshare.23898169
title: Occupational therapy-based self-management education in persons with post-COVID-19 condition related fatigue: a feasibility study with a pre-post design

description: Persons with post-COVID condition are a growing population requiring support returning to everyday life. Energy management education (EME) is a group self-management intervention based on energy conservation and management strategies delivered by occupational therapists. Data on the effectiveness of EME in persons with long COVID-related fatigue still need to be provided. This study aims to investigate procedural and methodological parameters to plan a future study analyzing the effectiveness of EME in individuals with post-COVID-19 conditions. A pre-post design was used. The procedural data was collected regarding eligibility, reasons for participation decline, dropout, and follow-up rates. Changes in self-efficacy in using energy management strategies, fatigue impact, competency in daily activities, and quality of life were collected three times. Implemented behavior strategies at five months from EME were documented. During five months, 17 of 30 eligible participants were included in the study. No dropouts were registered during the intervention period. The follow-up response rate was 70%. The effect size was large in three out of four outcomes post-intervention, with a tendency to increase at follow-up. This study demonstrated the feasibility of study procedures and reported promising effect sizes for EME that should be further researched. Persons with post-COVID condition are a growing population requiring support returning to everyday life.Energy management education (EME) is a group self-management intervention feasible in persons with long COVID-related fatigue.The data showed a large effect size in fatigue impact, self-efficacy in performing energy management strategies, and competency in daily activities. Persons with post-COVID condition are a growing population requiring support returning to everyday life. Energy management education (EME) is a group self-management intervention feasible in persons with long COVID-related fatigue. The data showed a large effect size in fatigue impact, self-efficacy in performing energy management strategies, and competency in daily activities.
DOI: 10.6084/m9.figshare.23898169.v1
title: Occupational therapy-based self-management education in persons with post-COVID-19 condition related fatigue: a feasibility study with a pre-post design

description: Persons with post-COVID condition are a growing population requiring support returning to everyday life. Energy management education (EME) is a group self-management intervention based on energy conservation and management strategies delivered by occupational therapists. Data on the effectiveness of EME in persons with long COVID-related fatigue still need to be provided. This study aims to investigate procedural and methodological parameters to plan a future study analyzing the effectiveness of EME in individuals with post-COVID-19 conditions. A pre-post design was used. The procedural data was collected regarding eligibility, reasons for participation decline, dropout, and follow-up rates. Changes in self-efficacy in using energy management strategies, fatigue impact, competency in daily activities, and quality of life were collected three times. Implemented behavior strategies at five months from EME were documented. During five months, 17 of 30 eligible participants were included in the study. No dropouts were registered during the intervention period. The follow-up response rate was 70%. The effect size was large in three out of four outcomes post-intervention, with a tendency to increase at follow-up. This study demonstrated the feasibility of study procedures and reported promising effect sizes for EME that should be further researched. Persons with post-COVID condition are a growing population requiring support returning to everyday life.Energy management education (EME) is a group self-management intervention feasible in persons with long COVID-related fatigue.The data showed a large effect size in fatigue impact, self-efficacy in performing energy management strategies, and competency in daily activities. Persons with post-COVID condition are a growing population requiring support returning to everyday life. Energy management education (EME) is a group self-management intervention feasible in persons with long COVID-related fatigue. The data showed a large effect size in fatigue impact, self-efficacy in performing energy management strategies, and competency in daily activities.
DOI: 10.6084/m9.figshare.23918354
title: “Be ready to learn”: a qualitative study of the patient perspective of falls and fall prevention following discharge from a spinal injuries unit

description: Falls following a spinal cord injury (SCI) can have physical and psychological consequences, although some risk of falls may be acceptable to enable participation in meaningful activity. The study aimed to explore the patients’ perspective of falls and fall prevention after discharge from a inpatient spinal injuries unit. An interpretive descriptive approach guided the study. Semi structured interviews were conducted in the 6–12 months post discharge period. Thematic analysis was used to analyze the data and identify themes. Fifteen individuals with SCI, with a mean age of 57 years and varied fall experiences were included. Three themes were identified including: 1. Expectation of falling; 2. Learning from my own experience and the experience of others’ and 3. How to prevent falls. Learning from their own experience and the experience of others was highly valued by persons with SCI and influenced expectations of falls. A variety of strategies were used to prevent falls. Strategies that include learning from others, include activities that are individual and provide skills in self-reflection may aid to make fall prevention meaningful. Patients want to learn from practical experience and the experience of others with spinal cord injury (SCI).Clinicians need to consider patients’ readiness to receive education and could benefit from the inclusion of peers in the delivery of information/education provided.A shift of focus for clinicians providing fall prevention education to skills in risk assessment, self-reflection and ability to formulate fall management plans may be beneficial to patients with SCI.Patients appreciate demonstration of skills. Clinicians are encouraged to learn wheelchair skills when performing functional tasks and demonstrate them to add credibility to their fall prevention education. Patients want to learn from practical experience and the experience of others with spinal cord injury (SCI). Clinicians need to consider patients’ readiness to receive education and could benefit from the inclusion of peers in the delivery of information/education provided. A shift of focus for clinicians providing fall prevention education to skills in risk assessment, self-reflection and ability to formulate fall management plans may be beneficial to patients with SCI. Patients appreciate demonstration of skills. Clinicians are encouraged to learn wheelchair skills when performing functional tasks and demonstrate them to add credibility to their fall prevention education.
DOI: 10.6084/m9.figshare.23918354.v1
title: “Be ready to learn”: a qualitative study of the patient perspective of falls and fall prevention following discharge from a spinal injuries unit

description: Falls following a spinal cord injury (SCI) can have physical and psychological consequences, although some risk of falls may be acceptable to enable participation in meaningful activity. The study aimed to explore the patients’ perspective of falls and fall prevention after discharge from a inpatient spinal injuries unit. An interpretive descriptive approach guided the study. Semi structured interviews were conducted in the 6–12 months post discharge period. Thematic analysis was used to analyze the data and identify themes. Fifteen individuals with SCI, with a mean age of 57 years and varied fall experiences were included. Three themes were identified including: 1. Expectation of falling; 2. Learning from my own experience and the experience of others’ and 3. How to prevent falls. Learning from their own experience and the experience of others was highly valued by persons with SCI and influenced expectations of falls. A variety of strategies were used to prevent falls. Strategies that include learning from others, include activities that are individual and provide skills in self-reflection may aid to make fall prevention meaningful. Patients want to learn from practical experience and the experience of others with spinal cord injury (SCI).Clinicians need to consider patients’ readiness to receive education and could benefit from the inclusion of peers in the delivery of information/education provided.A shift of focus for clinicians providing fall prevention education to skills in risk assessment, self-reflection and ability to formulate fall management plans may be beneficial to patients with SCI.Patients appreciate demonstration of skills. Clinicians are encouraged to learn wheelchair skills when performing functional tasks and demonstrate them to add credibility to their fall prevention education. Patients want to learn from practical experience and the experience of others with spinal cord injury (SCI). Clinicians need to consider patients’ readiness to receive education and could benefit from the inclusion of peers in the delivery of information/education provided. A shift of focus for clinicians providing fall prevention education to skills in risk assessment, self-reflection and ability to formulate fall management plans may be beneficial to patients with SCI. Patients appreciate demonstration of skills. Clinicians are encouraged to learn wheelchair skills when performing functional tasks and demonstrate them to add credibility to their fall prevention education.
DOI: 10.15468/dl.n2zg4h
title: Occurrence Download

description: A dataset containing 607 species occurrences available in GBIF matching the query:
{
 "and" : [
 "BasisOfRecord is one of (Human Observation, Specimen)",
 "Country is one of (Colombia, Peru, Venezuela (Bolivarian Republic of))",
 "HasCoordinate is true",
 "HasGeospatialIssue is false",
 "TaxonKey is Trogon violaceus J.F.Gmelin, 1788"
 ]
}

 The dataset includes 607 records from 13 constituent datasets; see https://api.gbif.org/v1/occurrence/download/0005873-240626123714530/datasets/export for details.
 
Data from some individual datasets included in this download may be licensed under less restrictive terms.