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Pain, fatigue, depressive symptoms and sleep disturbance in young adults with cerebral palsy

VAN GORP, Marloes
DALLMEIJER, Annet J
VAN WELY, Leontien
DE GROOT, Vincent
TERWEE, Caroline B
FLENS, Gerard
STAM, Henk J
VAN DER SLOT, Wilma
ROEBROECK, Marij E
December 2019

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Purpose: Investigate pain, fatigue, depressive symptoms and sleep disturbance in young adults with cerebral palsy compared to references.

 

Materials and methods: Young adults with cerebral palsy (n = 97, aged 21–34 years) and age-matched references from the general population (n = 190) rated pain using a numeric rating scale and fatigue, depressive symptoms, sleep disturbance and global health using Patient-Reported Outcomes Measurement Information System® short forms. Scores were compared between cerebral palsy subgroups and the reference population. Correlation coefficients and linear regression analyses assessed interrelationships of health issues and associations with global health.

 

Results: Individuals with Gross Motor Function Classification System level I had less pain, fatigue and depressive symptoms, while individuals with levels II and III–V had more pain (53% and 56%, p < 0.001) and those with levels III–V more fatigue (39%, p = 0.035) than references (pain: 26%, fatigue: 14%). Pain and fatigue were more interrelated (correlation coefficients: 0.71 vs. 0.41) and stronger associated with global mental health in individuals with cerebral palsy.

 

Conclusions: Young adults with Gross Motor Function Classification System levels II–V report more pain and those with levels III–V report more fatigue than references. Pain and fatigue are highly interrelated and specifically relate to mental health in individuals with cerebral palsy.

Perceptions of primary caregivers about causes and risk factors of cerebral palsy in Ashanti Region, Ghana

KYEI, Ernest Appiah
DOGBE, Joslin
2019

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Purpose: Cerebral palsy (CP) is the most common chronic childhood disability, but in most cases the primary causes are largely unknown. The study sought to determine the perceptions about the causes and risk factors of CP among primary caregivers of children with CP in the Ashanti region of Ghana.

 

Method: A descriptive study design with a quantitative approach was used. A simple random sampling technique was adopted to select 100 participants from among the primary caregivers whose children with CP were attending the physiotherapy unit of the Komfo Anokye Teaching Hospital in Ashanti region.  A structured questionnaire was administered to the respondents and data were analysed using SPSS version 21.0.

 

Results: CP was perceived as a disease caused by witchcraft (40%), punishment from God or Gods (12%), or by being cursed (10%). More than half (54%) of the respondents did not know of any risk factor for CP.

 

Conclusion and Implications: The perceived negative causes, as well as ignorance about the risk factors for CP, could result in primary caregivers stopping their children with CP from availing of the physiotherapy services. Public education and campaigns should focus on the causes and risk factors for CP, in order to change negative perceptions and improve awareness among the general public.

Learning from experience: Guidelines for locally sourced and cost-effective strategies to modify existing household toilets and water access

WORLD VISION
CBM Australia
2018

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This learning resource is the result of a partnership between World Vision Australia and CBM Australia that aims to improve inclusion of people with disabilities in World Vision’s Water, Hygiene and Sanitation (WASH) initiatives, including in Sri Lanka. The guidelines are based on experiences and observations from World Vision’s implementation of the Rural Integrated WASH 3 (RIWASH 3) project in Jaffna District, Northern Province, funded by the Australian Government’s Civil Society WASH Fund 2. The four year project commenced in 2014. It aimed to improve the ability of WASH actors to sustain services, increase adoption of improved hygiene practices, and increase equitable use of water and sanitation facilities of target communities within 11 Grama Niladari Divisions (GNDs) in Jaffna District.

To support disability inclusion within the project, World Vision partnered with CBM Australia. CBM Australia has focused on building capacities of partners for disability
inclusion, fostering connections with local Disabled People’s Organisations, and providing technical guidance on disability inclusion within planned activities. World Vision also partnered with the Northern Province Consortium of the Organizations for the Differently Abled (NPCODA) for disability assessment, technical support and capacity building on inclusion of people with disabilities in the project.

HOME MODIFICATIONS FOR WASH ACCESS
This document is one of two developed in the Jaffna District and describes the strategies which were used to assist people with disabilities to access toilet and water facilities at their own home. The strategies were designed to be low cost and were developed using locally available materials and skills in the Jaffna District of Sri Lanka. Houses and toilet structures in the region were made of brick and concrete. No new toilets were built and modifications involved only minor work to existing household structures, water points and toilets.

NOTE:
The development of this learning resource was funded by the Australian Government's Civil Society WASH Fund 2.

African Journal of Disability Vol 7 (2018)

2018

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This journal provides

  • Nineteen original research articles on a variety of topics including the cost of raising a child with autism, experiences of care givers to stroke survivors, dyslexic's learning experiences, communication rehabilitation, disability and food security, hearing children of deaf parents and rehabilitation of stroke survivors, disability policy, learning for deaf learners, aquatic based interventions for children with cerebral palsy, evaluation of community based rehabilitation programmes, the impact of stroke and barriers to the implementation of inclusive education.
  • Seven review articles: Intellectual disability rights and inclusive citizenship in South Africa: What can a scoping review tell us?; The benefits of hydrotherapy to patients with spinal cord injuries; Simple ideas that work: Celebrating development in persons with profound intellectual and multiple disabilities; The relationship between social support and participation in stroke: A systematic review; Parents of children with disabilities: A systematic review of parenting interventions and self-efficacy; Implementation of the 2006 Convention on the Rights of Persons with Disabilities in Zimbabwe: A review; Part 1: A review of using photovoice as a disability research method: Implications for eliciting the experiences of persons with disabilities on the Community Based Rehabilitation programme in Namibia
  • There is an opinion paper entitled - Deafening silence on a vital issue: The World Health Organization has ignored the sexuality of persons with disabilities
  •  There is a case study - Lessons from the pilot of a mobile application to map assistive technology suppliers in Africa

Cardiovascular diseases (CVD) and rehabilitation. Factsheet

HANDICAP INTERNATIONAL
March 2017

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Cardiovascular disease (CVD) refers to conditions that affect the heart and blood vessels. Most commonly this includes coronary heart disease (heart attacks), cerebrovascular disease (stroke) or raised blood pressure (hypertension). A stroke occurs when a blood clot (ischaemia) or a bleed (haemorrhage) disrupts the blood supply to part of the brain, starving that area of oxygen. Stroke is a leading cause of serious long-term disability. Common impairments and activity limitations from cardiovascular diseases are hemiplegia, word forming difficulties and slurring of speech, cognitive function, depression, sensory loss and shortness of breath. Different examples of rehabilitation in the care continuum are given. A case study of stroke in Nepal is provided. 

Surviving spinal cord injury in low income countries

ODEROD, Tone
August 2014

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Life expectancy and the situation of persons living with Spinal Cord Injury (SCI) in low income settings was explored. Mortality rates from injuries and challenges in daily lives of people with injuries from poorer economic backgrounds are were investigated and are compared with those with higher incomes. Literature studies and qualitative methods were used. Qualitative data was collected through semi-structured interviews with 23 informants from four study sites in Zimbabwe representing persons with SCI, their relatives and rehabilitation professionals.

There are few publications available about life expectancy and the daily life of persons with SCI in low income countries. Those few publications identified and the study findings confirm that individuals with SCI are experiencing a high occurrence of pressure sores and urinary tract infections leading to unnecessary suffering, often causing premature death. Pain and depression are frequently reported and stigma and negative attitudes are experienced in society. Lack of appropriate wheelchairs and services, limited knowledge about SCI amongst health care staff, limited access to health care and rehabilitation services, loss of employment and lack of financial resources worsen the daily challenges.

Conclusion: The study indicates that life expectancy for individuals with SCI in low income settings is shorter than for the average population and also with respect to individuals with SCI in high income countries. Poverty worsened the situation for individuals with SCI, creating barriers that increase the risk of contracting harmful pressure sores and infections leading to premature death. Further explorations on mortality and how individuals with SCI and their families in low income settings are coping in their daily life are required to provide comprehensive evidences.

Physical medicine and rehabilitation clinics of North America : new advances in prosthetics and orthotics

KRAFT, George H
BOSWELL, Mark H
Eds
February 2006

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"This issue reviews the biomechanical assessment of the lower limb as well as discussing new dynamic lower limb orthoses used to compensate for weakness. Although lower limb amputations are less common than in the past, they still occur, and new developments are discussed. These include new developments in postoperative management, new socket designs and suspensions, new prostheses, and microprocessors for knee units. One of the newest concepts discussed is the use of the Lokomat robotic gait orthosis for gait retraining. The most striking of the new developments in upper limb prosthetics is the work done on myoelectric designs with myoelectric implants as a means of control. These are discussed in detail by a physician and prosthetist familiar with these topics. Other important topics are also covered. These include scoliosis treatment using spinal orthoses, orthotic management of the limb suffering from neuropathic pain, and the use of prosthetics in pediatric amputations"
Physical medicine and rehabilitation clinics of North America, Vol 17, No 1

The HELP guide for community based rehabilitation workers : a training manual

LOVEDAY, Marion
2006

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This is a training manual for community based rehabilitation workers based upon physiotherapist's work on a rehabilitation project in Cape Town, South Africa. The manual is aimed at trainers of rehabilitation workers who are assumed to have adequate medical knowledge. The manual is divided into the following 4 main topics: health in the community; normal body functions; conditions and treatment; management of patients. Each section contains a summary of the learning aims for the rehabilitation workers, and the teaching is based mainly on a question and answer format
Note: originally published in 1990 by SACLA Health Project

Risk factors for participation restriction in leprosy and development of a screening tool to identify individuals at risk

NICHOLLS, PG
et al
December 2005

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This paper explores risk factors for participation restrictions experienced by people affected by leprosy. The objective was to develop a screening tool to identify individuals at risk. An initial round of qualitative fieldwork in eight centres in Nepal, India and Brazil identified 35 potential risk factors for participation restriction. This was further assessed through quantitative fieldwork in six centres in India and Brazil. In all, 264 individuals receiving leprosy treatment or rehabilitation services made a retrospective assessment of their status at time of diagnosis. Their level of participation restriction was assessed using the Participation Scale, and regression analysis identified risk factors for participation restriction. Four consolidated items were identified as the basis for a simple screening tool to identify individuals at risk: physical impact of leprosy, an emotional response to the diagnosis, female gender and having little or no education. Such a tool may form the basis for a screening and referral procedure to identify newly diagnosed individuals at risk of participation restrictions and the need of actions that may prevent such restrictions
Leprosy Review, Vol 76, Issue 4

Promoting independence following a stroke : a guide for therapists and professionals working in primary health care

DISABILITY AND REHABILITATION, WORLD HEALTH ORGANIZATION (WHO)
ASSOCIAZIONE ITALIANA AMICI DI RAOUL FOLLEREAU (AIFO)
1999

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This guide contains advice on how to plan and carry out a rehabilitation programme for someone who has had a stroke. The guide is intended for doctors and nurses, therapists who are involved in training mid-level rehabilitation workers, or for people who have had a stroke, their families and members of their communities

Promoting the development of infants and young children with spina bifida and hydrocephalus : a guide for mid-level rehabilitation workers

WORLD HEALTH ORGANIZATION (WHO) Rehabilitation Unit
1996

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This manual explains the types, signs and causes of spina bifida and hydrocephalus describing how to assess the child’s level of development and complications. It gives suggestions on how to promote the child’s normal development, mobility, self-care and education with examples of equipment that can be made from local materials

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