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What are the most effective strategies for strengthening health systems for disability inclusive development? - Evidence brief

MACTAGGART, Islay
February 2021

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Health system strengthening refers to initiatives that improve one or more functions of health systems, leading to better health. There is a large body of evidence on what works to strengthen health systems in low- and middle-income countries (LMICs), much of which is aligned to the World Health Organization (WHO) health system building blocks (service delivery; health workforce; information; medical products, vaccines and technologies; financing; and leadership/governance). Despite the fact that some people with disabilities have additional health needs, and many face additional barriers to accessing healthcare, inclusion of people with disabilities is largely missing from this evidence base. Separately, a smaller evidence base exists on increasing the effectiveness of specific health-related services targeting people with disabilities, such as health-related Community Based Rehabilitation (CBR), rehabilitation services more broadly, and mental health services. This second evidence base is less closely aligned to the building blocks. Reviewing these outputs in parallel goes some way towards identifying effective strategies for strengthening health systems for disability inclusive development.

Optimising the performance of frontline implementers engaged in the NTD programme in Nigeria: lessons for strengthening community health systems for universal health coverage

OLUWULE, A
et al
November 2019

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This research article focuses on optimising the performance of frontline implementers engaged with NTD programme delivery in Nigeria. Three broad themes are examined: technical support, social support and incentives

Qualitative data was collected through participatory stakeholder workshops. Eighteen problem-focused workshops and 20 solution-focussed workshops were held  in 12 selected local government areas (LGA) across two states in Nigeria, Ogun and Kaduna States

 

Human Resources for Health, 2019 Nov 1;17(1):79

doi: 10.1186/s12960-019-0419-8

The role of rehabilitation care workers in South African healthcare: A Q-methodological study

GAMIET, Shamila
ROWE, Michael
October 2019

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Background: The South African Department of Health identified the need to train a new cadre of community health worker (CHW) in the field of rehabilitation as part of their 2030 Health Plan that aims to improve primary healthcare (PHC) and community-based rehabilitation (CBR). Community health workers can be effectively utilised in CBR if their role is understood and their potential is not limited by professional protectionism and scepticism. A clear understanding of the scope of practice of a new cadre will minimise resistance by health professionals.

 

Objectives: The aim of this study was to explore rehabilitation health professionals’ perception of the role of the new cadre, called rehabilitation care workers (RCWs), in South African healthcare.

 

Methods: Q-methodology was used to gather and interpret the data. A convenient sample of 16 health professionals participated in the study. Participants ranked statements about the role of the RCWs from strongly agree to strongly disagree. Data were entered into PQMethod software program for statistical and factor analysis.

 

Results: Two factors emerged. Participants loading onto Factors 1 and 2 were of the opinion that RCWs’ role would be to strengthen PHC and CBR and to promote participation of people with disabilities (PWD) in intermediate care and community.

 

Conclusion: Rehabilitation health professionals’ positive perception of the new cadre is encouraging so that it could ensure their effective utilisation in CBR. Rehabilitation care workers were perceived as capable of enhancing the lives of PWD by ensuring inclusive development.

 

 

African Journal of Disability, Vol 8, 2019

Coordination between health and rehabilitation services in Bangladesh: Findings from 3 related studies

PRYOR, Wesley
MARELLA, Manjula
NGUYEN, Liem
SMITH, Fleur
JALAL, Faruk Ahmed
CHAKRABORTY, Ripon
HAQUE, Mazedul
MOSTOFA, Golam
HASAN, Rajib
April 2019

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The unmet need for rehabilitation is profound and is likely to worsen as population health shifts towards longer lives lived with more ill-health and disability. The WHO Global Action Plan on Disability and the Rehabilitation 2030 framework [1] call for quality evidence to inform targeted responses.
The intent of this work is to examine six IDSCs (Integrated Disability Service Centres) in detail but to use the results to inform new activities through the network of more than 100 Integrated Disability Service Centres, with potential to influence practice in other services. As such, results of this work have the potential to directly inform policy decisions concerning future investments in rehabilitation services in Bangladesh and bring awareness to key stakeholders on current challenges and potential solutions.

Research was conducted during March-October 2018 in Kurigram, Tangail, Manikgonj, Dhaka and Narsingdi districts of Bangladesh to map out the current trends and determinants of good coordination
between health and rehabilitation, emphasising quantitative measures of: timeliness, continuity, acceptability, availability and integration

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)

The intersection of disability and food security: Perspectives of health and humanitarian aid workers

QUARMBY, Candice A.
PILLAY, Mershen
2018

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Background: Most people with disabilities the world over can be found in the Majority (or ‘economically developing’) World. This is also where most of the world’s hungry and malnourished are found. We argue that the intersectionality between disability and nutrition may best be understood through a food security framework, and we position all people living with disability, including those experiencing feeding and swallowing disabilities, as at risk for food insecurity, especially those living in humanitarian emergency contexts.

 

Objectives: This study aimed to explore and describe the knowledge and experience of humanitarian aid workers (HAWs) and health care professionals (HCPs) in food assistance contexts with regard to the nutrition and food security of people living with disabilities.

 

Method: In this exploratory, descriptive study, 16 participants with experience in sub-Saharan Africa and Southern Asia participated in an online survey. Three survey participants with extensive experience were also interviewed. Data analysis involved descriptive statistics and thematic content analysis.

 

Results: Results revealed that participants had generally low levels of exposure to and experience with disability, including swallowing and feeding disorders.

 

Conclusions: Reduced knowledge of HAWs and HCPs regarding disability and the lack of professionals such as speech–language therapists, who manage disability-specific issues such as feeding and swallowing disorders, may affect the food security of people living with disabilities in food assistance contexts.

Right to health: Reality of persons with spina bifida and hydrocephalus

MCPHERSON. Amy
January 2017

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"This report maps the situation of persons with SBH in relation to healthcare access and is a follow up of the CRPD Concluding Observations Art.25. Through a comprehensive survey, IF collected valuable data on the experiences, satisfaction, and perceptions of healthcare coverage of individuals with SBH across Europe. Based on its findings, the financial coverage of treatment and assistive products for patients with SBH is grossly insufficient across the EU. Europe as a whole lacks multidisciplinary care and specialised SBH teams, which translates into long waiting times and insufficient knowledge of the SBH specificities. 

Considering these findings, IF urges the EU Member States to adequately support the healthcare needs of persons with SBH, and to invest more substantially into creating multidisciplinary clinics that can help avoid preventable complications 11 and may reduce the overall burden 12 on the patient and the system. In addition, the Member States should actively support creation of the European Reference Networks as a way of improving care for persons with SBH. IF also calls on the European institutions for support in training medical professionals on rights of persons with disabilities."

The Use of the International Classification of Functioning, Disability and Health in Primary Care: Findings of Exploratory Implementation Throughout Life

PRINZIE, Peter
LEBEER, Jo
PRINZIE, Peter
2016

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Purpose:   The International Classification of Functioning (ICF) has found widespread acceptance since it was launched in 2001. Yet, little is known about its use in Primary Care. This paper aims to contribute to the dialogue about the practical use of the ICF by exploring how this framework constitutes a supplementary source to inform disability-related decision making in integrated Primary Care.

 

Method: The implementation process of the ICF in a Latin American Primary Care and Community-Based Rehabilitation setting is described and the ICF diagram is applied to a life story as an example of its current use. Participant observation, in-depth study of reports of team meetings and the review of clinical files are the main data collection methods. Data analysis is enabled by the combination of single-case study with theory testing, which facilitates the generation of hypotheses in this exploratory study.

 

Results: A valuable time component of the ICF may support continuity in Primary Care and the universal application of the ICF framework can promote comprehensiveness by integrating individual rehabilitation and collective disability prevention. A way to mitigate the perceived dominance of biomedical disease and deficiency thinking is proposed in order to encourage the biopsychosocial focus of Primary Care. Finally, the implementation of the International Classification of Diseases (ICD-10) in the health condition domain of the ICF highlights the importance of social responsibility towards disability.

 

Conclusion: This study suggests that a creative implementation of the ICF during life course to everyone who uses universally accessible healthcare may strengthen the integrative functions of Primary Care, and may be at the heart of the information system of this essential part of the healthcare system. Further research on the complementary use of ICF and ICD-10 is suggested in order to support community-based multisectoral intervention which may be coordinated by Primary Care.

A home-based rehabilitation intervention for people living with HIV and disability in a resource-poor community, KwaZulu-Natal : study protocol for a randomized controlled trial

COBBING, Saul
HANASS-HANCOCK, Jill
MYEZWA, Hellen
2015

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In this paper, the researchers develop a needs-based home-based rehabilitation programme for people living with HIV in order to improve their quality of life and functional ability. The study aims to  provide rehabilitation professionals and researchers with evidence that can be utilised to improve existing rehabilitation interventions for people living with HIV.

The paper outlines a randomised control trial to test the programme, to be conducted at a public hospital in KwaZulu-Natal, South Africa. The trial will assess the participants’ quality of life, perceived level of disability, functional ability and endurance

Trials 16:491

Capturing the difference we make : community-based rehabilitation indicators manual

WORLD HEALTH ORGANIZATION (WHO)
2015

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This manual presents indicators that "capture the difference (Community-Based Rehabilitation) CBR makes in the lives of people with disabilities in the communities where it is implemented. This manual presents these (base and supplementary) indicators and provides simple guidance on collecting the data needed to inform them. The indicators have been developed to show the difference between people living with a disability and their families and those without disabilities in relation to the information reported in the indicators. This comparability provides valuable information to CBR managers, donors and government agencies alike, which can be used to guide decision-making, support advocacy and improve accountability. Further, the ability of the indicators to provide a comparison of the populations of persons with disability to persons without disability aligns with the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which states that persons with disability have equal rights to those without disabilities...this manual serves to standardize the monitoring of differences made by in the lives of people with disabilities and their families, making it possible to compare the difference CBR makes across areas and countries. This manual aligns with the WHO Global Disability Action Plan 2014–2021, and may also be used to monitor other development plans in an easy and efficient way”

Human Rights

www.macao-tz.org
December 2014

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Malezi AIDS Care Awareness Organization (MACAO) is a non-profit organization reaching out to neglected Indigenous people in Ngorongoro District, Arusha Region of Northern Tanzania.  Macao founded in 2003, Macao is a humanitarian organization that provides assistance to approximately 200,000 Indigenous Maasai community in Ngorongoro district for addressing needs of water and sanitation, food security, health Care Research, Education, Research environment, Maasai Traditional Research, Human Rights and sustainable economic development by strengthening their livelihoods.  In addition to responding to major relief situations, MACAO focuses on long-term community development through over 4 Area Development Project. We welcome the donors and volunteers to join us in this programs, we are wolking in ruro villages.

Spatial variation in the disability-poverty correlation : evidence from Vietnam

MONT, Daniel
NGUYEN, Cuong
August 2013

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"Poverty and disability are interrelated, but data that can disentangle the extent to which one causes the other is not available. However, data from Vietnam allows us to examine this interrelationship in a way not previously done. Using small area estimation techniques, we uncover three findings not yet reported in the literature. First, disability prevalence rates vary significantly within a county even at the district level. Second, the correlation between disability and poverty also varies at the district level. And most importantly, the strength of the correlation lessens based on district characteristics that can be affected by policy. Districts with better health care and infrastructure, such as roads and health services, show less of a link between disability and poverty, supporting the hypothesis that improvements in infrastructure and rehabilitation services can lessen the impact of disability on families with disabled members"
Working Paper Series, No 20

A Framework for Healthcare Provision to Children with Intellectual Disability

NUJUM, Z T
ANILKUMAR, T
VIJAYAKUMAR, K
ANISH, T
MOOSAN, H
2013

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Purpose: The Kudumbashree mission, an initiative of the Government of Kerala state in India, has collaborated with Local Self Governments to set up ‘Buds’, a special school system for individuals with intellectual disability. The objectives of this study were to evaluate the structure and functioning of ‘Buds’ schools, to identify the healthcare needs of the students, and to conceptualise a framework for healthcare provision.

 

Method: A cross-sectional survey was conducted among 202 children at 11 registered ‘Buds’ schools in Kerala. A multidisciplinary team consisting of a psychiatrist, public health personnel and a social worker from the Medical Colleges of Kerala, visited the institutions. Data collection consisted of abstraction from medical records, interviews with parents, and clinical assessment and prescription of intervention by the specialists concerned. A pre-tested semi- structured questionnaire was used for every child. Using both quantitative and qualitative techniques, the public health personnel in the team evaluated the structure and functioning of the schools.

 

Results: The most commonly associated condition was epilepsy, seen in 11.9% of the children, while 28.2% had behavioural problems. The medicines needed were mainly anti-epileptics and drugs for behavioural problems. Interventions for self help and social skill training were also among the important requirements. The infrastructure and other facilities were poor in many schools, with the average student to teacher ratio at 14:1. While these institutions were well utilised, functioning was good only in 27.2% of the schools. Healthcare services and visits by healthcare personnel were far from adequate. This study proposes a framework in which the Medical Colleges and Health Services can function together to deliver healthcare services to children at these schools, with linkages from the District Mental Health Programme (DMHP).

 

Conclusion and Recommendation: Evidence that these schools are well utilised indicates a need to propagate this initiative in other areas of the state, country and other countries. However, improvements in infrastructure, human resources and other logistics are required. Besides, the healthcare needs of these children have to be addressed. A comprehensive healthcare programme through the existing system, using a multidisciplinary approach, needs to be developed.

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

CBR matrix and perceived training needs of CBR workers: a multi-country study

DEEPAK, Sunil
2011

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CBR Matrix, proposed in the CBR Guidelines, provides a systematic framework for organising and analysing CBR activities. A sample of experienced CBR workers, active at community level in 7 countries , were asked for information about different activities they actually carry out, so as to understand the applicability of CBR Matrix framework in the field. The CBR workers were also asked to identify their most pressing learning needs in different areas of CBR Matrix.

This study shows that CBR Matrix can be a useful framework to understand field-level activities in CBR projects. The study has identified a number of priority learning needs, in terms of different domains of CBR Matrix, and in terms of different disabilities. It also shows that globally, areas related to advocacy, lobbying, legal protection and rights-based approach, are the most important learning needs identified by CBR workers.

Early childhood stimulation interventions in developing countries : a comprehensive literature review

BAKER-HENNINGHAM, Helen
BOO, Florencia Lopez
September 2010

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"This report reviews the effectiveness of early childhood stimulation interventions in developing countries. The report aims to answer the questions: What works in terms of early stimulation for young children in developing countries? For whom and under what conditions do these programs work and why do they work. The report is divided into several sections. Firstly, a brief discussion of the importance of early stimulation for young children in developing countries is provided. Secondly, the methods used to identify and characterize studies are provided and a review of randomized or quasi-experimental trials is presented. Thirdly, a review of the evidence for who benefits most from early interventions is presented followed by a review of program characteristics that affect the success of interventions and an examination of potential mechanisms through which interventions achieve their effects. Finally, recommendations for practice and future research are provided"
IDB working paper series

Personalised social support : thoughts, method and tools in an approach of proximity social services

RELANDEAU, Audrey
et al
May 2010

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This paper is a methodological guide to personalised social support to enhance understanding, thinking about and practising this approach to social work. It is targeted at field workers and public services’ or association advisers responsible for receiving, informing, guiding and supporting people with disabilities and other vulnerable groups.
This guide is divided into three sections. First, a "principles and benchmarks" section explores the theoretical aspects of social work, development and personalised social support. This section is followed by a "Practical guide" targeted at social workers, facilitators and advisers responsible for providing support and provides an in-depth guide to implementing personalised social support, based on various intervention techniques and practical tools. This section also offers a section devoted to project managers or social mecha¬nism coordinators, featuring benchmarks for the development and follow-up of a social support service. The third section features a "Toolbox" consisting mainly of tools sourced from Handicap International programmes

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