Oxford handbook of learning and intellectual disability nursing

654 Pages·2019·5.837 MB·English

by  Bob Gates (editor), Owen Barr (editor)

Oxford Medical Publications
Oxford Handbook of
Learning and
Intellectual
Disability Nursing
ii
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Oxford Handbook of General and Adult Nursing
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Oxford Handbook of
Learning and
Intellectual
Disability
Nursing
Second Edition
Owen Barr
Professor of Nursing and Intellectual Disabilities,
Ulster University, Londonderry, UK,
Visiting Professor, Faculty of Health Sciences,
University of Maribor, Slovenia
Bob Gates
Professor of Learning Disabilities, University of
West London, UK, Emeritus Professor, University
of Hertfordshire, UK, Visiting Professor of Learning
Disabilities, University of Derby, and Editor in
Chief of the British Journal of Learning Disabilities

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v
Preface
It is with considerable pride that the editors OB and BG of this text welcome
you to the second edition of the Oxford Handbook of Learning and Intellectual
Disability Nursing. This much revised textbook represents the culmination of
a 2-y ear project that has sought, as in the previous edition, to involve leading
practitioners and academics from the field of learning/i ntellectual disabilities
from the UK, as well as the Republic of Ireland and much further beyond, in
the production of an authoritative text able to offer essential facts and in-
formation on learning/i ntellectual disabilities. The editors set out on this
renewed task, knowing that much of the landscape for the practice of learning/
intellectual disability nursing has never been so complex, even more so that the
last edition. Nurses for people with learning/i ntellectual disabilities can now be
found working and supporting people in a variety of different care contexts
such as community learning disability teams, treatment and assessment services,
reach-o ut services, residential settings, day-c are services, respite services,
health facilitation, mental health and/o r challenging behaviour services, spe-
cial schools, and many other specialist services for people who are on the
spectrum of autistic disorders. Additionally, they can be found working for
many different agencies such as healthcare, social care, education, and the
independent sector (this comprises the private, voluntary, and not-f or-p rofit
organizations), and also alongside numerous other professional disciplines
such as clinical psychologists, social workers, occupational therapists, speech
and language therapists, and consultant psychiatrists in intellectual disabilities,
as well as a range of professionals within general healthcare, social services,
and education. Given this complexity of context and practice, we believe that
the Oxford Handbook of Learning and Intellectual Disability Nursing continues to
offer students, and newly qualified practitioners alike, up-t o-d ate and concise,
practical, applied knowledge, as well as theoretical information, for use in the
very many areas where nurses for people with learning/i ntellectual disabilities
are located. Notwithstanding that nurses for people with learning/i ntellectual
disabilities are the primary audience for this text, we continue to believe, and as
evidenced by its use, the wider audience includes a range of other health and/o r
social care professionals, who often seek an authoritative text that provides
essential facts and information on learning/i ntellectual disability.
In keeping with other handbooks in this series, the underlying philosophy
of this text is to be both ‘a guide and a friend’, adopting a ‘person- centred’
approach that has incorporated space for the reader to record their own
anecdotes, quotations, and notes. Therefore, as with other handbooks, the
Oxford Handbook of Learning and Intellectual Disability Nursing’s content is
organized, so that there is one topic per left- hand page, with the right- hand
pages generally having some blank space for notes and local information, or
for diagrams, flowcharts, tables, key point boxes, and other quick-r eference
information. The reader will also find a fully updated emergencies section
at the back of the book that provides essential information for the manage-
ment of, for example, status epilepticus, holding powers under mental health
legislation, and dealing with abuse. We believe that unique to this Oxford
Handbook is the continuing attention given to differences in legislation and
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vi PREFACE
social policy across the jurisdictions of the constituent countries of the UK,
as well as the Republic of Ireland.
It is important for us to make a brief note on the terminology used in this
text. Generally speaking, within the UK, the term ‘learning disability’ is used
to describe that group of people who have significant developmental delay
resulting in arrested or incomplete achievement of the ‘normal’ milestones of
human development. The term learning disability is also used throughout the
world, but where it may hold different meanings, paradoxically so too at times
in the UK. It is this difference in meaning that might lead to confusion as to
what we anticipate will be a continued international readership. Problematic
has been determining as to what term we should adopt. Elsewhere in the
world, alternative terms to ‘learning disability’ are used such as mental retard-
ation and mental handicap, but these terms are felt by many to portray negative
imagery concerning people with learning disabilities. Whereas we accept that
‘naming is not a simple act’ (Luckasson, 2003), the increasing internationalization
of textbooks has led us to conclude that we needed to adopt a term to re-
place learning disability that would enable this book to be seen as relevant to as
wide a readership as possible. That term which we believe seems most appro-
priate to this text, to the readership, and to those whom this book is principally
about and that which seems to have the most universal consensus is that of
‘intellectual disabilities’. Therefore, throughout the remainder of this text, we will
not repeat the rather clumsy term used, that of learning/i ntellectual disability,
and from hereon, in this book, we will use the term intellectual disability, save
where certain Acts and/o r other technical works require its use for accuracy.
We have also made a purposeful decision to use the full words of ‘intellectual
disabilities’, rather than the abbreviation ‘ID’ in order to highlight, rather than
risk minimizing, the importance of intellectual disabilities in the lives of people
who live with it. This is also important when considering your role as a nurse
for people with intellectual disabilities, and we encourage you to refer to your
role as a registered nurse for people with intellectual disabilities (or learning
disabilities), rather than an intellectual or learning disability nurse.
We feel confident that the Oxford Handbook of Learning and Intellectual
Disability Nursing has already become a highly regarded textbook—n ot only
in the field of intellectual disabilities, but also more widely, and that it will be
used just as widely by the many professionals and students from the range
of different professional and academic backgrounds that have an interest in
the lives of people with intellectual disabilities. Both editors also strongly
believe that the excellent end- product that you have before you is due
entirely to the excellent contributions that have been made by our many
friends and colleagues from across the UK, the Republic of Ireland, and
beyond, and we earnestly thank them for their trust in us by contributing to
this textbook. We earnestly hope that all who read this book find it helpful
and that its use will assist us all in helping people with intellectual disabilities
enjoy health and well- being in their lives.
Owen Barr, Derry, Northern Ireland
Bob Gates, Taddington, Derbyshire, England
January 2018
References
Luckasson R (2003). Terminology and power. In: SS Her, LO Gostin, HH Koh, eds. The Human Rights of
Persons with Intellectual Disabilities: Different but Equal. Oxford University Press: Oxford; pp. 49–5 8.
vii
Foreword
There have been many developments in learning/i ntellectual disability
nursing since I wrote the foreword to the 1st edition of this book in 2009.
One such development was the publication of a new nursing strategy
entitled ‘Strengthening the Commitment’ (Scottish Government, 2012). That
report made a number of recommendations for modernizing the profes-
sion and aimed to ensure that nurses with the right skills and knowledge
were available to meet the needs of people with learning/intellectual
disabilities across their lifespan, in the right place, at the right time. Within
that context, it highlighted new and developing roles that nurses for people
with learning/intellectual disabilities were adopting, and this is certainly an
area that has seen much development. As well as working within specialist
learning disability community and residential services, nurses for people with
learning/intellectual disabilities are increasingly working in a diverse and
growing range of settings that include general hospital services, children’s
services, end-o f- life care, schools, and prisons. For those of us that can re-
member the Cullen Report (1991), it would seem that the profession is truly
demonstrating that its knowledge and skills are ‘facility- independent’.
Recent years have also seen increased evidence that the health needs of
people with learning/intellectual disabilities are not always appropriately
identified and met, and that they experience an increased risk of premature
and avoidable death (Heslop et al., 2013). One response to this growing
awareness has been a call for all nurses to increase their awareness of the
health needs of people with learning/intellectual disabilities and to develop
their skills in identifying and meeting such needs. Indeed, at the time of writing
this foreword, new standards for pre-r egistration nursing are being developed
within the UK and the Republic of Ireland that will ensure a key element is
the need for all nurses, at the point of registration, to be able to identify and
address the health needs of people with learning/intellectual disabilities.
The need for nurses for people with learning/intellectual disabilities, along
with nurses from other fields of practice, to have access to key knowledge to
enable them to support people with learning disabilities, in whatever setting
they may work, is essential—h ence, this new and updated edition of the
Oxford Handbook is timely. Whereas there are a number of textbooks avail-
able, this new edition continues to adopt its unique approach. As with the
1st edition, it brings together key information in a readily accessible manner,
addressing many practice-b ased queries and concerns. It also provides a
starting point for further development through recommendations for add-
itional reading. In a field of practice that continues to grow, develop, and
expand, this book provides an essential point of reference for practitioners
that will support them to provide the right care for people with learning/
intellectual disabilities at the right time and in the right place.
Ruth Northway
Professor of Learning Disability Nursing
University of South Wales
viii
viii FOREWORD
References
Cullen C (1991). Caring for People Community Care in the Next Decade and Beyond. Department of
Health, Mental Handicap Nursing: London.
Heslop P, Blair P, Fleming P, Hoghton M, Marriott A, Russ L (2013). Confidential Inquiry into Premature
Deaths of People with Learning Disabilities (CIPOLD). Norah Fry Research Centre: Bristol.
Scottish Government (2012). Strengthening the Commitment. The Report of the UK Modernising
Learning Disabilities Nursing Review. Scottish Government: Edinburgh.
ix
Dedication
In loving memory of Adam
Owen Barr