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The missing billion - Access to health services for 1 billion people with disabilities

KUPER, Hannah
HEYDT, Phyllis
July 2019

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One billion people around the world live with disabilities. This report makes the case that they are being “left behind” in the global community’s work on health. This lack of access not only violates the rights of people with disabilities under international law, but UHC (Universal Health Care) and SDG 3 cannot be attained without better health services for the one billion people with disabilities. 

Health and healthcare are critical issues for people with disabilities. People with disabilities often need specialized medical care related to the underlying health condition or impairment (e.g., physiotherapy, hearing aids). They also need general healthcare services like anyone else (e.g., vaccinations, antenatal care). On average, those with disabilities are more vulnerable to poor health, because of their higher levels of poverty and exclusion, and through secondary conditions and co-morbidities. People with disabilities therefore may require higher levels of prevention, diagnosis, and treatment services. However, health services are often lower quality, not affordable, and inaccessible for people with disabilities. In many situations these barriers are even more significant for women with disabilities, compared to men with disabilities.

Shaping health systems to include people with disabilities. K4D emerging issues report

DEAN, Laura
et al
November 2018

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People with disabilities are at a heightened risk of communicable and non-communicable diseases and these diseases can cause debility and disability. Health needs of these people often extend beyond requiring continual longterm medical support to addressing broader social inequities. Key areas that are likely to be critical in re-orientating health systems from a biomedical approach towards inclusive health systems that are more responsive to the needs of people with debility and disability in low and middle-income countries (LMICs) are offered in this report and cover the following:

 

  • 1. Nothing about us without us: prioritising person-centred health systems
  • 2. Responding to issues of access in mainstreaming disability within health systems
  • 3. Ensuring the provision of specialised services
  • 4. Community based rehabilitation 
  • 5. Improving the collection and use of disability related data against modified legal and policy frameworks
  • 6. Partnerships are paramount
  • 7. Financing and social protection 

Case studies are provided from Sudan, India, Liberia, Uganda and Nigeria

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

 

Strengthening mental health system governance in six low- and middle-income countries in Africa and South Asia: challenges, needs and potential strategies

PETERSEN, Inge
et al
February 2017

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The aim of this study was to identify key governance issues that need to be addressed to facilitate the integration of mental health services into general health care in the six participating "Emerald" countries (Ethiopia, India, Nepal, Nigeria, South Africa, and Uganda).  The study adopted a descriptive qualitative approach, using framework analysis. Purposive sampling was used to recruit a range of key informants, to ensure views were elicited on all the governance issues within the expanded framework. Key informants across the six countries included policy makers at the national level in the Department/Ministry of Health; provincial coordinators and planners in primary health care and mental health; and district-level managers of primary and mental health care services. A total of 141 key informants were interviewed across the six countries. Data were transcribed (and where necessary, translated into English) and analysed thematically using framework analysis, first at the country level, then synthesised at a cross-country level.

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."

Advances in Autism, vol.3, no.3, 2017 Special issue: Improving access to healthcare

2017

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Special issue: Improving access to healthcare. The aim of this special issue is to stimulate discussion and new research on the health and health care of people with autism spectrum disorder. In a co-productive approach, we give people on the autism spectrum, their families and health care providers a voice to open an exchange between professionals and people with lived experience. The guest editorial is freely accessible. There are six papers:

 

  • Autism and healthcare
  • Quality of health and health services in people with fragile X syndrome: perspective of their parents
  • Transition tools and access to adult primary care
  • Systemic-attachment formulation for families of children with autism
  • An online ASD learning module for pediatric health care professionals
  • Pain in Rett syndrome: peculiarities in pain processing and expression, liability to pain causing disorders and diseases, and specific aspects of pain assessment

Success for Students and Nurses With Disabilities. A Call to Action for Nurse Educators

MARKS, Beth
McCULLOH, Karen
February 2016

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The identification and implementation of best practices by nurse educators in the USA to support the success of student nurses with disabilities are discussed. Requirements of The Americans With Disabilities Act Amendments Act (ADAAA) of 2008 and the Office of Federal Contract Compliance Programs (OFCCP) revisions to regulations implementing the nondiscrimination and affirmative action regulations of section 503 of the Rehabilitation Act of 1973, effective March 24, 2014 are described. Best practices for educating students with disabilities in nursing education are discussed. The Increased understanding of disability will promote greater diversity and inclusivity within the nursing profession, which will enhance patient care. Three case studies are provided: a student nurse with hearing difficulties having issues with "a code blue"; a student nurse wheelchair user; and student nurse with low vision requiring IT assistance 

Nurse Educator, Jan-Feb 2016, Vol. 41(1), pp.9-12. doi: 10.1097/NNE.0000000000000212

Access to health care, reproductive health and disability: A large scale survey in Sierra Leone

GROCE, Nora
TRANI, Jean-Francois
BROWN, Joyce Brown
KETT, Maria
BAH, Osman
MORLAI, Teddy
BAILEY, Nicki
2011

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This is the first study to compare health status and access to health care services between disabled and non-disabled men and women in urban and peri-urban areas of Sierra Leone. It pays particular attention to access to reproductive health care services and maternal health care for disabled women. A cross-sectional study was conducted in 2009 in 5 districts of Sierra Leone, randomly selecting 17 clusters for a total sample of 425 households. All adults who were identified as being disabled, as well as a control group of randomly selected non-disabled adults, were interviewed about health and reproductive health. As expected, we showed that people with severe disabilities had less access to public health care services than non-disabled people after adjustment for other socioeconomic characteristics (bivariate modelling). However, there were no significant differences in reporting use of contraception between disabled and non-disabled people; contrary to expectations, women with disabilities were as likely to report access to maternal health care services as did non-disabled women. Rather than disability, it is socioeconomic inequality that governs access to such services. We also found that disabled women were as likely as non-disabled women to report having children and to desiring another child: they are not only sexually active, but also need access to reproductive health services.

Study on social and health services general interest in the European Union

HUBER, Manfred
MAUCHER, Mathias
SAK, Barbara
June 2008

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This study seeks to improve the knowledge of both health operators and the European Commission of the situation of social and health services in the European Union. The aim is to improve the application and impact of Community rules on the development of these services. The European Commission will use this report to establish a monitoring and dialogue tool in the form of biennial reports

Study on social and health services of general interest in the European Union : final synthesis report

HUBER, Manfred
MAUCHER, Mathias
SAK, Barbara
June 2008

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This report seeks to improve the knowledge of both operators and the European Commission about the situation of social and health services of general interest in the European Union (EU). It is also designed to examine the impact of the EU rules on the development of social and health services. The purpose is to eventually establish a monitoring and dialogue tool in the form of biennial reports

Evidence-based planning for sustainability of government reproductive health services

NEALE, Palena
HUE, Le Ngoc
KUDRATI, Mustafa
June 2008

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This training manual is to help prepare local government health teams to use evidence-based methods to develop long-term plans to strengthen their Reproductive Health programmes and to actively involve participants in the learning process. There is an insistence on the systematic use of local and national data, statistics, and policies to develop an appropriate response; and a recognition that because local governments in most countries develop plans in the context of competing priorities for a limited budget, plans are only as good as the local government health department’s ability to defend them

The palliative care toolkit : improving care from the roots up in resource limited settings

BOND, Charlie
LAVY, Vicky
WOOLDRIDGE, Ruth
2008

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"A practical manual to equip, empower and encourage health workers in resource-limited settings to integrate palliative care into their work and their communities. It brings holistic and "can do" approach to delivering care for those suffering with life-limiting diseases and is an important contribution to increasing the spread of palliative care globally"

Access to pain relief - an essential human right

2007

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This report highlights the lack of pain control currently available around the world. It recommends urgent government action to ensure that all sections of society have equal and adequate access to pain control. It is estimated that 100 million people could benefit from basic palliative care every year. Data in this report show that even in established palliative care units, patients lack access to pain control that they need

Palliative care in Sub-Saharan Africa : an appraisal

HARDING, Richard
HIGGINSON, Irene
2004

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This report was written from the belief that palliative care is, and will be for the forseeable future, an essential component in the continuum of managing HIV/AIDS in sub-Saharan Africa. There is now a wealth of experience in sub-Saharan Africa about the ways in which palliative care can be delivered both affordably and effectively. However, there remains a lack of properly documented evidence and research to demonstrate the importance of this work and promote its development. This report provides a review of existing evaluations of palliative care projects in sub-Saharan Africa with an emphasis on isolating the factors that lead to sustainability, local ownership and scaling up; the role of palliative care in the management of HIV/AIDS and how to integrate palliative care and Anti-Retroviral Therapy (ART); primary health based care projects in two countries, Kenya and Malawi, that could provide lessons for the implementation of palliative care; lessons from other parallel programmes which mirror palliative care delivery, for example, tuberculosis programmes, and primary care programmes with good links to local clinics and hospitals, and community mobilization and empowerment projects linked to health facilities. In this way it contributes to the effort of providing an evidence base to demonstrate the importance of palliative care and provides a source of reference for policy makers, practitioners, donors and researchers

Guidelines for essential trauma care

MOCK, C
et al
2004

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These guidelines provide a series of resource tables for essential trauma care that detail the human and physical resources that should be in place to assure optimal care of the injured patient at a range of health facilities throughout the world. The health facilities range from rural health posts, to small hospitals staffed by general practitioners, to hospitals staffed by specialists, to tertiary care centres. They also offer a series of recommendations on methods to promote such standards including training, performance improvement, trauma team organisation and hospital inspection.
The guidelines are a collaboration between the World Health Organization, the International Society of Surgery and the International Association for the Surgery of Trauma and Surgical Intensive Care

The provision of reproductive health services in private hospitals in Amman, Jordan

BANKS, Dwayne
SHAHROURI, Manal
September 2003

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This survey of the 30 private acute care hospitals in Amman provides baseline information on services and aims to help the Jordanian Ministry of Health (MOH) understand the steps it must take to enhance its contracting with private sector facilities. The survey measured the availability of a broad range of hospital services, focussing on prenatal, delivery, and postnatal services. It also looked at hospital staffing, and it queried the satisfaction of hospitals with existing contracts with the MOH and their willingness to expand contractual relationships, comply with clinical guidelines, and participate in the health information system. The survey found that, among the 25 respondent hospitals, more than 90 percent offered reproductive health services. While all hospitals expressed a willingness to engage in a contractual relationship with the MOH, many described frustrations with current contracting, and less than half were willing to use the clinical guidelines and the information system

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