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Sightsavers' approach to making health services inclusive for everyone

Sightsavers
April 2019

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Sightsavers has produced a new film that sets out our work to make health care services accessible and inclusive for everyone. It focuses on our programmes in Bhopal, India and Nampula, Mozambique. This highlights how we work and share learnings globally, but also shows how programmes can be made locally relevant by working with partners with direct experience.

The film showcases some of the people who work hard to make our inclusive health programmes a success, from Sightsavers experts and government health workers to leaders of disabled people’s organisations.

To find out more our inclusive health work and how we are developing best practice in terms of inclusive health programmes, visit our website: https://www.sightsavers.org/disability/health/

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.

MAANASI - A sustained, innovative, integrated mental healthcare model in South India

JAYARAM, Geetha
GOUD, Ramakrishna
CHANDRAN, Souhas
PRADEEP, Johnson
2019

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Studies in low and middle-income countries (LMICs) point to a significant association of common mental disorders with female gender, low education, and poverty. Depression and anxiety are frequently complicated by lack of disease awareness and non-adherence, the absence of care and provider resources, low value given to mental health by policy-makers, stigma, and discrimination towards the mentally ill. This paper aims to show that female village leaders/ community health and outreach workers (CHWs) can be used to overcome the lack of psychiatric resources for treatment of common mental disorders in rural areas.

A multidisciplinary team was set up to evaluate and treat potential clients in the villages. A program of care delivery was planned, developed and implemented by: (a) targeting indigent women in the region; (b) integrating mental health care with primary care; (c) making care affordable and accessible by training local women as CHWs with ongoing continued supervision; and (d) sustaining the program long-term.   Indigenous CHWs served as a link between the centre and the community. They received hands-on training, ongoing supervision, and an abridged but focused training module to identify common mental disorders, help treatment compliance, networking, illness literacy and community support by outreach workers. They used assessment tools translated into the local language, and conducted focus groups and client training programs. 

As a result, mental healthcare was provided to clients from as many as 150 villages in South India. Currently the services are utilized on a regular basis by about 50 villages around the central project site. The current active caseload of registered clients is 1930.  Empowerment of treated clients is the final outcome, assisting them in self-employment. 

Rural mental healthcare must be culturally congruent, and must integrate primary care and local CHWs for success. Training, supervision, ongoing teaching of CHWs, on-site resident medical officers, research and outreach are essential to continued success over two decades.

 

Disability, CBR & Inclusive Development, [S.l.], v. 30, n. 2, p. 104-113, Oct. 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.

Report of the informal consultation on stopping discrimination and promotion inclusion of persons affected by Leprosy. New Delhi, 14–16 Nov 2017

COOREMAN, Erwin
WHO SEARO/Department of Control of Neglected Tropical Diseases
et al
2018

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An Informal Consultation on Stopping Discrimination and Promoting Inclusion of Persons Affected by Leprosy was held in New Delhi from 14 to 16 November 2017. Forty delegates with diverse backgrounds, experience and expertise enriched the discussions. Persons affected by leprosy brought to the table the challenges faced in daily life and suggested actions to be taken to reduce stigma and discrimination related to leprosy. Representatives of national programmes presented actions taken in their respective countries. The participants acknowledged the fact that stigma and discrimination related to leprosy still exists at a significant level. Information about stigma and discrimination related to leprosy needs to be collected in a more systematic manner to assess the magnitude of the problem and to further plan activities to reduce it.

Key recommendations from the consultation included counselling and reporting of incidences of discrimination. Efforts should be continued to inform facts about leprosy to the community.

The participants strongly recommended that leprosy programmes should adopt a ‘rights-based approach’ in line with the Sustainable Development Goals.

Ensuring universal access to eye health in urban slums in the Global South: the case of Bhopal (India).

PREGEL, Andrea
et al
October 2017

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In the context of its Urban Eye Health Programme in Bhopal (India), Sightsavers launched a pilot approach aimed at developing an Inclusive Eye Health (IEH) model and IEH Minimum Standards.

Accessibility audits were conducted in a tertiary eye hospital and four primary vision centres located within urban slums, addressing the accessibility of physical infrastructures, communication and service provision. The collection and analysis of disaggregated data inform the inclusion strategy and provide a baseline to measure the impact of service provision. Trainings of eye health staff and sensitisation of decision makers on accessibility, universal design, disability and gender inclusion are organised on a regular basis.

A referral network is being built to ensure participation of women, people with disabilities and other marginalised groups, explore barriers at demand level, and guarantee wider access to eye care in the community. Finally, advocacy interventions will be developed to raise awareness in the community and mainstream disability and gender inclusion within the public health sector.

Linking rehabilitation and social work using the personalised social support process: Steps to establish a social work unit and future directions for social work in Cambodian PRCs using the model developed at Kampong Cham

PEARSON, Anita
SONG, Sit
2017

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This publication intends to draw lessons learned from the set-up of a Social Work (SW) unit in the PRC in Kampong Cham province of Cambodia using the Personalized Social Support (PSS) process and provide an example of person-centered approach in rehabilitation service delivery, to be considered by PWDF and other rehabilitation I/NGOs and promoted within other PRCs in Cambodia. The specific objectives of this publication are: 

  • To identify recruitment strategies and clinical activities conducted by the SW unit 
  • To consider the capacity development of SW staff along the development of a SW unit
  • To outline how SW and PSS are linked to the Cambodian Ministry of Social Affairs Veterans and Youth Rehabilitation Guidelines on Physical Rehabilitation in Cambodia4 (also known as the Standard Working Procedures -SWP) with reference to its application.
  • To consider how SW interventions and PSS contributes to service users’ social participation and rights.

Capturing best practices through a ‘’lessons learnt’’ process can be utilized to advocate for the adoption and replication of such a model within wider rehabilitation services in Cambodia.

This publication was developed by a mixed methods approach on the basis of various sources and tools, including:

  • Desk review including collection of documents and tools used by the SW unit, and field visit reports
  • Workshops/meetings with the PRC Manager, PRC Unit heads and Focal Clients (FC) to gain reflections on the process and map a reverse pathway of change
  • Key Informant interviews: Interviews with members of the project team and local authorities.
  • Case study frames were designed and used as well as some questions from SCOPEO5 Quality of life linked to social and personal relationships during the interview. 
  • Interviews with 15 beneficiaries (SW Clients at the PRC) to assess the impact of SW input over a 13 month period from June 2015 to July 2016

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.

Living in hell : how people with mental health conditions in Indonesia are treated

HUMAN RIGHTS WATCH (HRW)
March 2016

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This report examines the abuses—including pasung—that persons with psychosocial disabilities face in the community, mental hospitals, and various other institutions in Indonesia, including stigma, arbitrary and prolonged detention, involuntary treatment, and physical and sexual violence. It also examines the government’s shortcomings in addressing these problems.

Based on research across the Indonesian islands of Java and Sumatra, Human Rights Watch documented 175 cases of persons with psychosocial disabilities in pasung or who were recently rescued from pasung. 

 

Evaluation of the feasibility and acceptability of the ‘Care for Stroke’ intervention in India, a smartphone-enabled, carer-supported, educational intervention for management of disability following stroke

SURESHKUMAR, K
MURTHY, G V S
NATARAJAN, S
GOENKA, S
KUPER, H
February 2016

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This study aimed to identify operational issues encountered by study participants in using the ‘Care for Stroke’ intervention and to evaluate the feasibility and acceptability of the intervention. ‘Care for Stroke’ is a smartphone-enabled, educational intervention for management of physical disabilities following stroke. It is delivered through a web-based, smartphone enabled application (app). It includes inputs from stroke rehabilitation experts in a digitised format. Sixty stroke survivors discharged from hospital in Chennai, South India, and their caregivers participated in the study. The preliminary intervention was field-tested with 30 stroke survivors for 2 weeks. The finalised intervention was provided to a further 30 stroke survivors to be used in their homes with support from their carers for 4 weeks. Field-testing identified operational difficulties related to connectivity, video-streaming, picture clarity, quality of videos, and functionality of the application. Assessment was carried out by direct observation and short interview questionnaires. 

 

 

Equal basis 2014 : access and rights in 33 countries

BURKE, Megan
PERSI VICENTIC, Loren
December 2014

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This report presents research about efforts to meet the needs and uphold the rights of persons with disabilities in four thematic areas: health care, rehabilitation, work and employment, and accessibility and enabling environments. Research findings are drawn from the experiences of landmine and cluster munition survivors and other persons with similar needs in 33 countries experiencing armed conflict or emerging from armed conflict or political or economic transition. Findings are placed within the context of relevant articles of the Convention on the Rights of Persons with Disabilities and the World Report on Disability

Evolution of community physiotherapy in India

RAJAN, Pavithra
2014

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Despite the urgent need for physiotherapy services for underprivileged communities, Community Physiotherapy is not a sought-after specialisation in India. Physiotherapists tend to serve in institutions rather than at community level, as a result of which this field of healthcare has stagnated. This article, based on an interview with one of the country’s eminent community physiotherapists, gives a first person account of the evolution of community physiotherapy in India and provides qualitative inputs to deal with the prevalent issues. While the need for services has increased, there has been no matching growth in the pool of physiotherapists willing to work in the community. Several recommendations have been made, including changes in approach to community physiotherapy by both physiotherapists as well as community organisations in India.

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.

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.

Barriers to sustainable access of children and families to ART centres in rural India : a report on operations research conducted in Maharashtra and Manipur

INDIA HIV/AIDS ALLIANCE
December 2009

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This report identifies barriers that children and families face in accessing anti-retroviral therapy (ART) centres in rural India. The report also seeks to find solutions to these barriers based on an operations research conducted in Maharashtra Pradesh and Manipur. Operations research objectives: * To build an understanding among policy makers of the barriers faced by children and caregivers accessing ART services in rural communities. * To assess and highlight a basic minimum level of standards for ART centres in terms of adequacy, quality and timeliness of support needed. * To explore opportunities for linkages with state and district level departments and/or local self-governing institutions

Operational guide for implementation of IICCHAA project

INDIAN INITIATIVE OF CHILD CENTRED HIV & AIDS APPROACH (IICCHAA)
2008

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This operational guide provides a broad direction for implementing memory work in India in the field, based on a communication needs assessment carried out as part of the Indian Initiative for Child Centred Approaches to HIV & AIDS (IICCHAA). The guide is divided into two sections: how to roll out the training effectively at field level and some basic information about HIV and AIDS

Integrating mental health into primary care : a global perspective

WORLD HEALTH ORGANIZATION (WHO)
WORLD ORGANIZATION OF FAMILY DOCTORS (WONCA)
2008

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This report provides the rationale and know-how on integrating mental health into primary health care. It outlines primary care for mental health in context and then presents primary care for mental health in practice, highlighting 12 case studies and key lessons learnt from specific countries. A detailed annex on the core functions of primary care workers is provided, as well as 10 core principles of mental health integration. This resource is useful to anyone interested in integrating mental health into primary care

Continuum of care for HIV-positive women accessing programs to prevent parent-to-child transmission : findings from India

MAHENDRA, Vaishali S
et al
2007

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This is the report of a diagnostic study in 2005 to provide an evidence base to strengthen the national Indian prevention of parent-to-child transmission (PPTCT) initiative. The key research questions were: What are the treatment, care, and support needs of HIV-positive women and what services do the women utilize to meet their needs? What are the different ways (clinic-based, community-based, etc) to link HIV-positive women and their families with treatment and care services? The study indicated that linkages between PPTCT and HIV care services, as well as PPTCT and reproductive health services, were limited

Role of social workers in Indonesia

SUHARTO, Edi
2006

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"After reviewing the figures and definitions related to disability, this paper explores the psychosocial issues confronting people with disabilities and the challenges for social workers working in rehabilitation for people with disabilities. Finally, the process of social work services and the roles of social workers with reference to the rehabilitation setting are examined"
Third Country Training on Vocational Rehabilitation for Persons with Disabilities, National Vocational Rehabilitation Centre (NVRC)
Cibinong, Bogor, Indonesia
10-11 November 2006

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