This technical brief was developed to support specialists in countries of the Middle East and North Africa (MENA) region to select which early detection tools best fit their needs and context by comparing various tools that have been used in theregion and lessons learned in using and adapting those tools to local contexts.
Congenital talipes equinovarus (CTEV), commonly known as clubfoot is one of the most common congenital conditions, affecting 1 in 800 births. Left untreated, it can lead to life-long impairment, impacting participation in society, education, and employment. Most children with clubfoot can be successfully treated with the Ponseti method, a low-cost, cost-effective, and minimally invasive treatment protocol. Despite progress, less than 1 in 5 children born with clubfoot in low- and middle-income countries (LMICs) currently receive treatment.
Recommendations are made to increase this treatment rate.
Purpose: To translate and cross-culturally adapt the Chelsea Critical Care Physical Assessment tool from English to German (CPAx-GE) and to examine its validity and reliability.
Materials and methods: Following a forward-backward translation including an expert round table dis- cussion, the measurement properties of the CPAx-GE were explored in critically ill, mechanically ventilated adults. We investigated construct, cross-sectional, and cross-cultural validity of the CPAx-GE with other measurement instruments at pre-specified timepoints, analysed relative reliability with intraclass correl- ation coefficients (ICCs) and determined absolute agreement with the Bland–Altman plots.
Results: Consensus for the translated CPAx-GE was reached. Validity was excellent with >80% of the pre- specified hypotheses accepted at baseline, critical care, and hospital discharge. Interrater reliability was high (ICCs > 0.8) across all visits. Limit of agreement ranged from 2 to 2 points. Error of measurement was small, floor, and ceiling effects limited.
Conclusions: The CPAx-GE demonstrated excellent construct, cross-sectional, and cross-cultural validity as well as high interrater reliability in critically ill adults with prolonged mechanical ventilation at baseline, critical care, and hospital discharge. Consequently, the CPAx-GE can be assumed equal to the original and recommended in the German-speaking area to assess physical function and activity of critically ill adults across the critical care and hospital stay.
Purpose: To explore participation in real-life activities during early childhood, compare children’s partici- pation based on motor function and investigate relationships between participation and parental empowerment.
Methods: Data derived from the Cerebral Palsy Follow-up Program (CPOP) in Norway and the research registry Habilitation Trajectories, Interventions, and Services for Young Children with CP (CPHAB). Fifty-six children (12–56 months, GMFCS levels I–IV, MACS levels I–V) and their families were included. Frequency and enjoyment of participation were assessed by the Child Engagement in Daily Life Questionnaire and parental empowerment in family and service situations by the Family Empowerment Scale at least twice during the preschool years. Differences between groups based on motor function were explored by the Kruskal–Wallis tests. A linear mixed model was conducted to explore relationships between child partici- pation and parental empowerment.
Results: Similarities and differences in participation between children at different motor function levels varied between the activities explored. Fluctuations in frequency and stable enjoyment scores over time were most common. A statistically significant relationship was revealed between child participation and parental empowerment in family situations, but not in service situations.
Conclusions: Child participation appears as context-dependent and complexly influenced by both motor function and parental empowerment. This supports a focus on transactional processes when exploring and promoting child participation.
Purpose: Augmentative and Alternative Communication (AAC) systems are very often abandoned by the users and caregivers due to potential challenges in implementation. This study aimed at exploring the use of Communication Supports Inventory-Children and Youth (CSI-CY), based on the International Classification of Functioning, Disability, and Health-Children and Youth (ICF-CY), as a potential tool for identifying barriers and facilitators in AAC implementation in the southern part of India.
Method: The CSI-CY was administered to the parents of a child with cerebral palsy and a child with autism spectrum disorder, respectively. Environmental facilitators and barriers that affect communication were rated. A semi-structuredinterview was also conducted to identify additional barriers and facilitators as identified by parents.
Results: Barriers related to services and policies, people and assistive technology, were identified for both cases. Additionally, the semi-structured interview identified barriers related to myths, clinicians, child, AAC use, economy andsociety.
Conclusion: CSI-CY is a potential tool for clinicians to systematically identify and document barriers and facilitators to implement AAC. It can further assist them in setting goals and defining the necessary intervention for each child with disability. Early use of AAC contributes to better therapeutic outcomes. Training should be given to professionals, special need educators and school teachers about different AACs and the appropriate techniques to be used. Counselling and evidence from earlier successful AAC interventions can dispel existing myths. Awareness programmes, group discussions and training on AAC can be done to eliminate barriers that may exist among rehabilitation professionals in India.
FindMyApps is a web-based selection-tool and errorless learning training program to help people with mild dementia/Mild Cognitive Impairment (MCI) and caregivers find user-friendly apps. In preparation of a definitive trial, the impact and feasibility of the FindMyApps intervention on self-management and engagement in meaningful activities, including social participation, was explored.
Materials and methods
An exploratory pilot randomised controlled trial (trial registration approval number: NL7210) with pre/post measurements was conducted with community-dwelling people with mild dementia/MCI and their caregivers (n = 59) in the Netherlands. Dyads in the experimental group (n = 28) received training to use the tablet and FindMyApps, and the errorless learning method was taught to their caregivers. Control group dyads (n = 31) received a tablet (without FindMyApps), instructions on tablet-use and links to dementia-friendly apps. Validated instruments were used to assess person with dementia’s self-management, meaningful activities and social participation, caregiver’s sense of competence and both their quality of life.
Results and conclusions
No statistical significant group differences on the outcomes were found. Small to moderate effect-sizes in favour of the FindMyApps group were found for self-management and social participation. Caregivers tended to have more positive care experiences. Subgroup analyses showed that people older than 70 benefitted more from FindMyApps regarding self-management and higher educated people benefitted more regarding social participation. FindMyApps is feasible for the target group and may have potential to improve self-management and social participation. For a future definitive effectiveness trial a larger sample size is recommended, as well as taking into account the possible impact of education and age.
There has been much work related to the evolution of recovery pathways following critical illness. COVID-19 presents a real opportunity to ensure full implementation of existing hospital and community based rehabilitation services for people recovering from critical illness, and to identify areas requiring further development in the post-COVID-19 era. The Life After Critical Illness (LACI) work stream of the Faculty (of Intensive Care Medicine, UK) was halfway to being delivered when the pandemic struck. This position statement and provisional guidance has been produced to support the pandemic and provide a national framework for future Critical Illness Recovery Services.
When emergencies strike, there is a huge surge in the need for Early Rehabilitation. Early Rehabilitation for patients with traumatic injuries in conflicts and disasters is now recognised as being an integral part of a patient’s recovery. However, the majority of rehabilitation professionals in countries that experience such emergencies do not have all the skills needed to treat all of the injuries. HI, in collaboration with leading organisations (ICRC, MSF-France, CBM, Livability & the WHO), has created this educational resource package to fill this gap
Each chapter of this handbook has been written by experts in their field. It includes pictures and evidence based treatment protocols to help rehabilitation professionals around the world to delivery high quality early rehabilitation intervention. Chapters included are:
- Key Challenges in Delivering Early Rehabilitation in Conflicts and Disasters
- Early Rehabilitation Patient Assessment and Treatment - the Basics
- Early Rehabilitation of Fractures
- Early Rehabilitation of Peripheral Nerve Injuries
- Early Rehabilitation of Amputees
- Early Rehabilitation of Acquired Brain Injuries
- Early Rehabilitation of Spinal Cord Injuries
- Early Rehabilitation of Burns
Videos accompany each of the chapters. The handbook contents are directly linked to modules taught on disasterready.org where there are additional accompanying resources designed to be used in conflict and disasters settings
Purpose: The Rashtriya Bal Swasthya Karyakram (RBSK) is an ongoing screening and early intervention programme for children in India. Children with birth defects and developmental disabilities from rural and urban communities are referred for treatment and therapies to early intervention centres located in urban areas. This study primarily aimed at determining caregiver uptake and compliance to referral advice of the RBSK, with the larger goal of determining the utility of the community-based screening and district-based intervention service model for caregivers of children with disabilities.
Method: Three administrative blocks and one municipal corporation area of Pune district, in Maharashtra, were randomly selected. The sample consisted of 115 caregivers of children with disabilities. They were interviewed using a semi-structured questionnaire that investigated uptake of referral advice, treatment outcome, current health status of the child and reasons for noncompliance, three to nine months after the first referral by the RBSK team.
Results: Sixty-four caregivers were aware of their child’s disability, but most children remained untreated. After screening and referral by the RBSK team, compliance was high for treatable conditions like congenital heart defects. Treatment was discontinued for 83% (24 out of 29) of children with developmental disabilities. Reasons for discontinuation included lengthy waiting time, distance to facility, difficulty in transporting the child, loss of wages, and denial of the child’s disability.
Conclusion and Implications: The results indicated that the RBSK programme provides treatment opportunities for children who are left undiagnosed and untreated in the community. Providing rehabilitation services at district centres is a barrier for service uptake. Alternative models such as early childhood development screening and integrating rehabilitation services at the primary healthcare level may be more feasible to provide services for children with disabilities in India.
Background: Vocational rehabilitation (VR) aims to rehabilitate a person with an amputation back into actively participating in society. Even though lower limb amputation (LLA) surgery is commonly performed in South Africa (SA), little research has been published on the participation restrictions experienced by and vocational needs of persons with LLA in the Western Cape (WC).
Objectives: The aim of this study was to determine and explore the participation restrictions and VR needs of persons with a unilateral LLA in the WC.
Method: A mixed-methods approach and a sequential exploratory design were utilised to collect data from 50 persons with an LLA. Participants were conveniently sampled within the Cape Metropole region of the WC, SA. The World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) tool was used to collect the quantitative data, and telephonic interviews were conducted for qualitative data collection.
Results: A third (28%) of participants in this study were unemployed, and only 14% (n = 7) of the participants owned or used a prosthesis. In addition, 50% of the participants either had a disability grant or were on pension. The participation restrictions identified were mainly related to mobility where 74% (n = 37) of participants had extreme difficulty with mobility in general, 92% (n = 46) struggled with walking distances longer than 1 km and 80% (n = 40) had extreme difficulty in completing household tasks quickly. The main VR needs identified in this study were the inadequate rehabilitation services that target ambulation (standing and walking) to facilitate employment.
Conclusion: Persons with a unilateral LLA still experience significant difficulties in mobility 3 months post-amputation, which negatively affects their participation in society and vocational activities.
African Journal of Disability, Vol 8, 2019
Introduction: Success of e-health relies on the extent to which the related technology, such as the electronic device, is accepted by its users. However, there has been limited research on the patients’ perspective on use of e-health-related technology in rehabilitation care.
Objective: To explore the usage of common electronic devices among rehabilitation patients with access to email and investigate their preferences regarding their usage in rehabilitation.
Methods: Adult patients who were admitted for inpatient and/or outpatient rehabilitation and were registered with an email address were invited to complete an electronic questionnaire regarding current and preferred use of information and communication technologies in rehabilitation care.
Results: 190 out of 714 invited patients completed the questionnaire, 94 (49%) female, mean age 49 years (SD 16). 149 patients (78%) used one or more devices every day, with the most frequently used devices were: PC/laptop (93%), smartphone (57%) and tablet (47%). Patients mostly preferred to use technology for contact with health professionals (mean 3.15, SD 0.79), followed by access to their personal record (mean 3.09, SD 0.78) and scheduling appointments with health professionals (mean 3.07, SD 0.85).
Conclusion: Most patients in rehabilitation used one or more devices almost every day and wish to use these devices in rehabilitation.
Purpose: Although cerebrovascular accident is a leading cause of mortality in the Philippines, there has never been a national survey of stroke client descriptors and rehabilitation practices. This paper reports on data from the audit of stroke care for inpatients in hospitals serviced by physiatrists.
Method: Audit was done of the medical records of stroke clients admitted to hospitals with rehabilitation units. Performance indicators for timely referral to rehabilitation were applied.
Results: A total of 1683 records were audited. The majority of clients had cerebral infarct followed by cerebral haemorrhage. The median length of stay was 7 days; stay was lengthier for haemorrhagic strokes. Only 54.1% of the clients were referred to rehabilitation, with a median delay of 3 days between admission and referral to rehabilitation. 25.4% of the clients had early referral to rehabilitation. 39.2% of the 1397 clients were referred to rehabilitation earlier than 2 days before discharge.
Conclusion: This Filipino study provides valuable information on stroke types and prevalence, demographics and rehabilitation practices. Despite the prevalence of post-stroke rehabilitation, it has been underutilised in the management of stroke.
A checklist is ideal when assessing young children who are ‘difficult to test’. The Communication DEALL Developmental Checklist (CDDC) was developed by Karanth (1), to assess developmental skills of children up to the age of 6 years, along eight developmental domains, with norms based on an Indian population. Since all checklists depend on rater reliability, the aim of the current study was to establish inter rater reliability of the CDDC. Two senior Speech Language Pathologists used a 4-point rating scale, to assess 40 children with developmental disabilities (across the ages of 0-6 years) on the CDDC checklist. Each rater independently made two ratings during the assessment; the first as reported by the parent (PR1 and PR2), and the second based on the clinician’s own observation (CR1 and CR2). The correlation between CR1 and CR2, as well as PR1 and PR2 for each rater separately, was found to be high, suggesting that the CDDC provides a reliable baseline for the developmental skills of children up to 6 years.
Sense International is a global charity supporting deafblind people in Bangladesh, India, Kenya, Tanzania, Peru, Romania and Uganda. An overview is given of work by Sense International in the areas of early intervention, education and health services, livelihood support, building local capacity and advocacy for deafblind people.
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