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Efficacy of a Low-cost Multidisciplinary Team-led Experiential Workshop for Public Health Midwives on Dysphagia Management for Children with Cerebral Palsy

HETTIARACHCHI , Shyamani
KITNASAMY, Gopi
MAHENDRAN, Raj
NIZAR, Fathima Shamra
BANDARA, Chamara
GOWRITHARAN, Paramaguru
2019

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Purpose: Over the past decade there has been a growing focus on offering appropriate training to healthcare professionals and caregivers to support safe feeding practices for children with cerebral palsy. Early and consistent multidisciplinary intervention is required to minimise the risks of aspiration pneumonia. The high incidence of complications from aspiration pneumonia among children with cerebral palsy in Sri Lanka has made it necessary to conduct low-cost multidisciplinary team-led dysphagia awareness workshops for healthcare professionals and caregivers.

 

Method: A group of 38 Public Health Midwives (PHMs) was offered an experiential workshop by a small multidisciplinary team (MDT). To determine changes in knowledge, a self-administered questionnaire that included a video-based client scenario was administered pre- and post-workshop. The data were analysed statistically using non-parametric within-participant t-tests.

 

Results: The post-workshop responses to the questionnaire indicated a significant increase in the level of knowledge. This included positive changes in the understanding and knowledge of cerebral palsy (t (37) =-7.44, p=.000), effects of cerebral palsy on eating and drinking skills (t (37) =-3.91, p=.000), positioning (t (37) = -9.85, p=.000), aspiration (t (37) =-3.46, p=.001), food categorisation (t (37), -3.85, p=.000) and client video observation (t (37)-3.91, p=.000) at a p=.05 level of significance. While there was also an increase in the knowledge on general guidelines during mealtimes, this did not reach statistical significance.

 

Conclusion: The low-cost MDT-led experiential workshop was effective in increasing knowledge of feeding and dysphagia-related issues in cerebral palsy among a group of PHMs. This workshop could serve as a model for training PHMs and Community-Health Workers across the country in order to reach the Sustainable Development Goal of ‘good health and well-being’ for children with cerebral palsy and all children experiencing feeding difficulties. Follow-up workshops and continued professional development courses for midwives on dysphagia care are strongly recommended, in addition to collaborative clinical practice.

Disability and global health: Special issue of International Journal of Environmental Research and Public Health

KUPER, Hannah
POLAK, Sarah
Eds
2019

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Papers included in this special issue are:

 

Impact of parenting a child with cerebral palsy on the quality of life of parents: A systematic review of literature

RAMANANDI, Vivek H
PARMAR, Trupti Rudra
PANCHAL, Juhi Kalpesh
PRABHAKAR, M M
et al
2019

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Purpose: The implications of parenting a child with cerebral palsy (CP) are multifaceted, as parents have to cope with their child’s functional limitations and specific needs, and prepare for the possibility of long-term dependence. There has been significant research on the consequences of managing these parenting tasks. This article reviews the literature on the effects of parenting children with CP, and summarises the related factors.

 

Methods: A systematic search of online databases was conducted and, based on the reference lists of selected articles, further studies were identified. Thirty-six articles that met the inclusion criteria were analysed.

 

Conclusion & Implication: Parents of children with CP were found to have lower quality of life, associated with high levels of stress and depression, due to factors such as child behaviour and cognitive problems, low caregiver self-efficacy and low social support. The implications of these findings in relation to the planning and development of interventions addressing the family as a whole are discussed. The aim is to enhance parents’ competence and resources so that they are better able to cope with the demands of parenting their children.

 

 

Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)

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.

Primary health care seeking behaviour of people with physical disabilities in Bangladesh: a cross-sectional study

TALUKDAR, Jhalok Ronjan
MAHMUD, Ilias
RASHID, Sabina
September 2018

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People with disabilities constitute about 10% of the total population of Bangladesh. They are more likely to experience poor health than those without disabilities. However, there is a lack of evidence on their primary health care (PHC) seeking behaviour for their general illness. The aim of this study was to understand the PHC seeking behaviour of people with physical disabilities (PWPDs), and to investigate the determinants of such behaviours. 282 PWPDs, aged ≥18 years, were studied using a structured questionnaire. Participants were recruited from the out-patient department of a rehabilitation centre in Dhaka between November and December 2014.

 

Archives of Public Health (2018) 76:43 

https://doi.org/10.1186/s13690-018-0293-1

 

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

A situational analysis of disability and aging in Myanmar

ZEITZER, Ilene
2018

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The interaction of aging and disability is explored in the context of Myanmar. Blindness and deafness data are taken from the census. Carer givers and the family are discussed. Goverment and civil society responses are also discussed.

A briefing paper is also available.

Evaluating the impact of a community–based parent training programme for children with cerebral palsy in Ghana

ZUURMOND, Maria
et al
January 2017

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"Cerebral palsy is the most common cause of physical disability in children worldwide, and yet in most low resource settings there are few services available to support children with cerebral palsy or their families. Research is required to understand the effectiveness of community and/or home based programmes to address this gap. This 2-year study aimed to evaluate a participatory caregiver training programme called ‘Getting to know cerebral palsy’ in Ghana. The training programme consisted of a monthly half-day support group with training, and a home visit, delivered across eight sites in Ghana over 10 months. A total of 76 families and children were included at baseline and 64 families followed up one year later at endline. Children were aged between 18months and 12 years with a mean of 3.8 years and a range of severity of cerebral palsy. Nearly all (97%) the caregivers were female and the father was absent in 51% of families. The study was a pre-post intervention design using mixed methods to evaluate the impact. A baseline and endline quantitative survey was conducted to assess caregiver quality of life (QoL) and knowledge about cerebral palsy and child feeding, health, and nutrition outcomes. Qualitative data was collected to explore the impact and experiences of the training programme in more depth".

Work Ability Index: Validation and Model Comparison of the Malaysian Work Ability Index (WAI)

LAVASANI, Sobhan
WAHAT, Nor Wahiza Abdul
2016

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Purpose: The study aimed to (1) measure the Work Ability of employees with disability; (2) assess the factor structure of different potential models of Work Ability Index (WAI) for employees with disability; and (3) identify the best factor structure of Work Ability Index for employees with disability in the Malaysian cultural context.

 

Methods: Data was collected using the Work Ability Index (WAI) translated into Malay language. The study sample consisted of 275 employees with physical disability, from both public and private sectors across Malaysia. Descriptive statistics were calculated using IBM SPSS 20 to evaluate the score of each subscale and the cumulative index of Work Ability among employees with disability. Confirmatory factor analysis (CFA) was conducted using IBM SPSS AMOS 21 to assess the factor structure of WAI and evaluate the validity of the proposed models for employees with disability.

 

Results: The WAI scores were 29.5% poor, 35.3% moderate, 28.7% good and 6.5% excellent. In the validation process, a non-orthogonal two dimensional structure was identified. In this model of WAI, the subscales were attributed to two factors: (1) subjective Work Ability factor that consisted of subscales 1, 2 and 7; and (2) health-related Work Ability factor, comprised of subscales 3, 5, 4 and 6. These two factors were positively correlated, which indicates that employees with disability who exhibit positive subjective Work Ability tend to also report positive health- related Work Ability.

 

Conclusion: This study has provided the first Malay version of WAI and has paved the way for future studies on work ability among employees with disability. The WAI translation has been validated among employees with disability and has shown adequate psychometric properties, thus making it suitable to investigate the associations between aspects of work and their impact on the health of employees with disability. 

Spinal cord injury

WORLD HEALTH ORGANIZATION (WHO)
November 2013

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WHO factsheet on spinal cord Injury (SCI) presents key facts related to spinal cord injury (SCI).  It includes the following details: background information; prevalence; demographic trends; mortality; the health, economic and social consequences of SCI; prevention; improving care and overcoming barriers; and WHO response

Fact sheet N°384

Getting to know cerebral palsy|Working with parent groups : a training resource for facilitators, parents, caregivers, and persons with cerebral palsy

INTERNATIONAL CENTRE FOR EVIDENCE IN DISABILITY (ICED)
et al
2013

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This manual aims to increase knowledge and skills in caring for a child with cerebral palsy. Research highlighted the significant needs of the caregivers, and how they can gain a huge amount of support from meeting with each other in an understanding environment. The manual is divided into 11 modules and promotes a participatory learning approach with an emphasis on the empowerment of parents and caregivers. It provides an opportunity for parents to organise themselves and to consider strategies at the community level to address some of the issues which affect them and their child
Note: An online community that aims to support practitioners share their learning and experiences around the parent training manual is available from the weblink. Members can share questions and perspectives, news items and resources with eachother via email or through a community website

International perspectives on spinal cord injury

BICKENBACH, Jerome
et al
Eds
2013

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This report assembles and summarizes information on spinal cord injury, in particular the epidemiology, services, interventions and policies that are relevant, together with the lived experience of people with spinal cord injury. It also provides recommendations for actions based on this evidence that are consistent with the aspirations for people with disabilities as expressed in the Convention on the Rights of Persons with Disabilities

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

ILEP learning guide four : how to prevent disability in leprosy

CROSS, Hugh
MAHATO, Margaret
2006

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"This book is for all health workers who may have to help people who have nerve damage to their eyes, hands and feet. It will help them to encourage patients to develop a lifetime habit of caring for nerve-damaged parts. The content of this book complements the recommendations in the Operational Guidelines of the World Health Organization"
Note: This resource is available to download in three parts

Elearnsci.org

ELEARNSCI.ORG

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This is a web-based educational resource for health professionals responsible for the management of spinal cord injury (SCI). It is comprised of seven learning modules, each subdivided into various submodules. Six of the seven modules address the educational needs of all disciplines involved in comprehensive SCI management. The seventh module addresses prevention of SCI. Each submodule includes an overview, activities, self-assessment questions and references. The content of the learning modules is relevant to students and SCI healthcare professionals

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