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Master Copy Background Document for Rights Based Care Guidance For Background document to inform the development of guidance on a human rights- based approach to care and support in health and social care settings June 2019 Background document to inform the development of guidance on a human rights-based approach to care and support in health and social care settings Health Information and Quality Authority About the Health Information and Quality Authority The Health Information and Quality Authority (HIQA) is an independent statutory authority established to promote safety and quality in the provision of health and social care services for the benefit of the health and welfare of the public. HIQA’s mandate to date extends across a wide range of public, private and voluntary sector services. Reporting to the Minister for Health and engaging with the Minister for Children and Youth Affairs, HIQA has responsibility for the following: . Setting standards for health and social care services — Developing person-centred standards and guidance, based on evidence and international best practice, for health and social care services in Ireland. Regulating social care services — The Office of the Chief Inspector within HIQA is responsible for registering and inspecting residential services for older people and people with a disability, and children’s special care units. Regulating health services — Regulating medical exposure to ionising radiation. Monitoring services — Monitoring the safety and quality of health services and children’s social services, and investigating as necessary serious concerns about the health and welfare of people who use these services. Health technology assessment — Evaluating the clinical and cost- effectiveness of health programmes, policies, medicines, medical equipment, diagnostic and surgical techniques, health promotion and protection activities, and providing advice to enable the best use of resources and the best outcomes for people who use our health service. Health information — Advising on the efficient and secure collection and sharing of health information, setting standards, evaluating information resources and publishing information on the delivery and performance of Ireland’s health and social care services. National Care Experience Programme — Carrying out national service- user experience surveys across a range of health services, in conjunction with the Department of Health and the HSE. Page 2 of 131 Background document to inform the development of guidance on a human rights-based approach to care and support in health and social care settings Health Information and Quality Authority Table of contents About the Health Information and Quality Authority ............................................... 2 Acknowledgements .............................................................................................. 6 Executive summary .............................................................................................. 7 1. Introduction ................................................................................................... 12 1.1 Overview .................................................................................................. 12 1.2 National standards developed by HIQA and how they relate to human rights 13 1.3 The FREDA Principles ................................................................................ 15 1.4 How the guidance will be developed .......................................................... 17 1.5 Structure of this report .............................................................................. 17 2. Overview of Relevant Legislation ..................................................................... 18 2.1 The Universal Declaration of Human Rights ................................................ 18 2.2 The European Convention on Human Rights ............................................... 18 2.3 Relevant legislation in an Irish context ....................................................... 19 3. International Review ...................................................................................... 27 3.1 A human rights-based approach to care and support: a review of international jurisdictions .................................................................................................... 27 3.2 England .................................................................................................... 28 3.3 Scotland ................................................................................................... 42 3.4 The Netherlands ....................................................................................... 50 3.5 Iceland ..................................................................................................... 57 3.6 Summary of international review ................................................................ 61 4. Evidence Synthesis Methodology ..................................................................... 62 4.1 Overview of the evidence synthesis process ................................................ 62 4.2 Scoping review ......................................................................................... 62 4.3 Objectives ................................................................................................ 62 4.4 Search strategy methodology .................................................................... 63 4.5 Scoping consultation and suggested resources ............................................ 64 4.6 Summary of search results ........................................................................ 65 5. Evidence Synthesis Findings............................................................................ 68 5.1 Structure of the literature review ............................................................... 68 Page 3 of 131 Background document to inform the development of guidance on a human rights-based approach to care and support in health and social care settings Health Information and Quality Authority 5.2 Principle 1: Fairness .................................................................................. 68 5.3 Principle 2: Respect ................................................................................... 78 5.4 Principle 3: Equality .................................................................................. 84 5.5 Principle 4: Dignity .................................................................................... 93 5.6 Principle 5: Autonomy ............................................................................. 101 5.7 Summary of evidence synthesis ............................................................... 111 6. Summary, Conclusion and Next Steps ............................................................ 112 References ...................................................................................................... 116 Appendix 1 – The relationship between the National Standards developed by HIQA and the specific human rights as set out in the European Convention on Human Rights ............................................................................................................. 126 Appendix 2 – International stakeholders ............................................................ 130 Page 4 of 131 Background document to inform the development of guidance on a human rights-based approach to care and support in health and social care settings Health Information and Quality Authority Tables and Figures Table 1: Search terms used to search academic databases ................................... 64 Figure 1: The FREDA Principles ........................................................................... 16 Figure 2: CQC’s human rights approach to regulation ........................................... 33 Figure 3: Principles underpinning the HSC Standards ........................................... 47 Figure 4: Support material developed to assist in implementing the HSC Standards 48 Figure 5: Prisma flow chart for evidence synthesis ............................................... 66 Figure 6: The British Institute of Human Rights decision-making flow chart ........... 74 Page 5 of 131 Background document to inform the development of guidance on a human rights-based approach to care and support in health and social care settings Health Information and Quality Authority Acknowledgements This guidance has been developed in conjunction with Safeguarding Ireland. HIQA would like to thank the Irish Human Rights and Equality Commission (IHREC) who part-funded this project under the Human Rights and Equality Grant Scheme 2017. Page 6 of 131 Background document to inform the development of guidance on a human rights-based approach to care and support in health and social care settings Health Information and Quality Authority Executive summary Human rights are the basic rights and freedoms that all people should enjoy. A human rights-based approach to health and social care is about ensuring that human rights are protected in practice and embedded in the culture of a service. A human rights-based approach to health and social care involves empowering people to know and claim their rights. It also involves increasing the ability and accountability of staff working in health and social care services to respect, protect and fulfil the human rights of people using services. Although human rights are enshrined in legislation nationally and internationally, it has been recognised that there is a widespread lack of knowledge and understanding of the application of human rights
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