Planning with people and their families

This chapter builds on the information within Chapter 4 and gives more in-depth consideration to the practicalities of accurate nursing assessments and writing outcome-focused care plans. It provides detailed information on important considerations when planning nursing interventions with people with intellectual disabilities and their carer/carers, including the role of advocacy, life planning, client health records, consent process, making best interests decisions, vulnerability, and safeguarding children and adults. It adds to this practical information by providing information on the necessary wider considerations for effective nursing and collaborative interdisciplinary and inter-agency working across the UK and the Republic of Ireland, including care pathways, health action planning, health facilitation, case management, and direct care payments.

Assessment

It is a professional requirement of nursing regulators such as the Nursing and Midwifery Council and the Nursing and Midwifery Board of Ireland that all nursing interventions should be based upon, and underpinned by, an accurate and structured nursing assessment of a person’s physical, mental, and social abilities and needs. Nurses need to have an understanding of how to assess changes in a person’s physical and mental health, including their level of pain, distress, and ability to make informed decisions, and how this may fluctuate in different settings and across the lifespan. They also need to be alert to the risks of diagnostic overshadowing when undertaking assessments, from which they will plan nursing care in collaboration with the people with intellectual disabilities and their carer/carers.

Independent regulators of care quality

This chapter provides an overview of the role of the independent care regulators across the UK and the Republic of Ireland. It provides information on arrangements for care regulators within the specific jurisdictions of Scotland, England, Wales, Northern Ireland, and the Republic of Ireland. This chapter outlines the role of the independent care regulators in both inspecting and supporting the development of quality in services. Nurses for people with intellectual disabilities need to have a rounded and balanced understanding of the role of these care regulators, as well as the standards and resources they provide, in order to maximize the quality of care provided to people with intellectual disabilities.

National occupational standards and professional requirements

Nurses for people with intellectual disabilities are autonomous and accountable practitioners, and in order to behave in a professional manner, they need to be aware of, and remain up-to-date with, the requirements of, and resources from, the professional bodies that regulate their practice. This chapter provides an overview of the role of the professional regulators of nursing in the UK and the Republic of Ireland and the continuing importance of this to registered nurses. It also explores the need for nurses to engage in continuing professional development and outlines opportunities for career development in areas, including specialist and advanced nursing practice, management, education, and research.

Lifestyles and intellectual disability nursing

A significant component of the role of nurses for people with intellectual disabilities is contributing to enabling people with intellectual disabilities to live the lifestyle they choose. Advice about residential alternatives, work, supported employment, and planning on retirement are all things on which the nurse should be able to advise, and signpost people to the services they need. Importantly, helping and advising the family and carers about setting up networks and circles of support and that making and keeping friends are as important and can all contribute to leading a happy and healthy lifestyle.

Mental health and emotional well-being

This chapter has a strong emphasis on promoting mental health and emotional well-being. It also recognizes that people with intellectual disabilities may develop mental health problems similar to, but perhaps more frequently than, people who do not have intellectual disabilities. This chapter considers what emotional well-being is, factors contributing to mental health, and the importance of assertiveness. It then explores how to support people with intellectual disabilities to access general primary, secondary, and tertiary mental health services, before giving specific consideration to anxiety, psychotic and organic disorders, dementia, psychopathology, autistic spectrum disorders, self-harm, substance misuse, and the challenges to emotional well-being that may arise from the experience of bereavement.

Physical health and well-being

This chapter explores in detail aspects of health in children, adults, and older people with severe intellectual disabilities. It reviews why they have higher health needs when compared with the general population. It also identifies the different pattern of physical health needs and the high comorbidity in this group of people, as well as explores how many health needs can remain untreated. It demonstrates that the health profile of people with mild intellectual disabilities is similar to the wider population, once socio-economic factors are taken into account, although importantly they may experience more difficulty in accessing health promotion and primary and secondary care services. As a result of these factors, which include unmet health needs, many people die unnecessarily and at a premature age. This chapter uniquely provides comprehensive coverage of the very many factors compromising health and well-being, along with providing a range of strategies that registered nurses for people with intellectual disabilities can adopt in order to support health and well-being.

Working with families

The majority of people with intellectual disabilities live with family members, and those people who live elsewhere usually very much value contact with family members. Therefore, nurses who work with people with intellectual disabilities need to have a clear understanding of families and collaborative working. This chapter explores the definition of families, the impact that having a person with intellectual disabilities as a family member may have, and how this can change the life cycle of a family as families adapt to their changing circumstances. It also explores collaborative working with family members, parents with intellectual disabilities, parents of people with intellectual disabilities and siblings, as well as looking at family quality of life and social, cultural, and spiritual factors that may need to be considered.

Emergencies

Nurses for people with intellectual disabilities are often required to make autonomous professional decisions and respond to people with intellectual disabilities in emergency or challenging situations. This chapter explores how the likelihood of an emergency situation may be assessed and, if possible, avoided through proactive nursing decisions. It also provides practical advice and lists additional resources that will be of use when responding to emergency situations, including the management of a person in a seizure, self-harm, self-injury, missing person, risk of suicide, allergies, adverse reactions to medication, medication errors, and needlestick/sharps injuries. The chapter concludes with consideration of, and practical advice on, concerns about unsafe standards of care or complaints and the importance of accurate recording and reporting.

Practice resources

Nursing for people with intellectual disabilities has moved from a narrowly defined role, within long-term care, to a much broader role within the National Health Service and beyond. It is a health profession supported and endorsed by many as unique in its breadth of employment base, located as it is among the various sectors. The role of nurses for people with intellectual disabilities spans community support specialists, liaison nursing roles between services and agencies, and roles in secure or forensic health settings, and these roles offer support across all age ranges. With such exciting possibilities, in practice come challenges such as where to access up-to-date resources that will support nurses for people with intellectual disabilities and students in their practice. Where a student finds new resources for their jurisdiction, they may find it useful to append their own notes to the sections within this chapter; the layout of the book has been designed for students to make relevant notes on.