a clinical guide to sleep disorders in children and adolescents

Book Reviews

A Clinical Guide to Sleep Disorders inChildren and AdolescentsGregory Stores, Cambridge University Press, Cambridge. 196 pages (pbk), ISBN 0-521-

65398-3, 2001. Price £27.95 (US $39.95).

This book is a clear and comprehensive resource for all disciplines working within

paediatrics and child specialities. The author successfully provides an informative guide

to the specialized area of sleep disorders in children, and achieves his aim by providing

an overview of the neglected area of children’s sleep-disorder medicine. Unfortunately,

he limits his accomplishment by referring to it as an area of ‘medicine’, as it provides a

substantial coverage of a variety of multiprofessional assessments.

The text is organized in a logical sequence with the first chapter introducing the

subject, and the outlay of the book. It also outlines the author’s justification for writing

such a book by highlighting the current lack of specialist interest in children’s sleep

difficulties. He emphasizes that much research to date has focused on adult sleep

disorders, and has failed to recognize the difference and importance of children’s

problems within a developmental context. The second chapter begins with a background

history to the research and study of sleep disturbances and the prevalence of such sleep

disorders in children. It then highlights the potential high-risk groups of children and the

cognitive, physiological and psychological effects that sleep problems may exacerbate.

The third chapter stands alone and is comprehensive enough in itself to be a general

overview of children’s sleep disorders. It provides an excellent review on the nature of

normal sleep and the relative sleep patterns and functions according to different

developmental stages within childhood up until adolescence. The author’s bias towards

a clinically focused text is evident within this chapter, as he strongly emphasizes the

difference between sleep problems and sleep disorders, and the multiple factors that can

differentiate diagnoses. He clearly presents the preferred classification system for

identifying sleep disorders by describing the International Classification of Sleep Dis-

orders or ICSD-R as superior owing to its concise and logical diagnostic system. He

defines for the reader the three ICSD-R sleep disorder categories of dysomnias, para-

somnias and other sleep disorders around which the remaining text is organized. Most

importantly, he outlines a clinical approach and assessment process by which sleep

disorders in children are investigated, identified and treated.

The next three chapters are structured according to the three general sleep problems

that children display: sleeplessness, excessive sleepiness and sleep disturbances. Chap-

ter three begins by logically covering the definition, prevalence and aetiology of

sleeplessness within children. The author also helpfully provides a developmental

framework to the assessment of sleeplessness and highlights the multiple environmental

and physiological factors that may influence such sleeping difficulties at various ages.

Chapter four has a different approach by focusing on the intensity and degrees of

sleepiness in children and the range of possible aetiologies. It is, in this chapter, that the

author’s medical emphasis and specialist interest is most apparent, as the topic of Upper

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276 # 2002 BILD Publications

Airway Obstruction is heavily covered and investigated. Chapter five returns to the

sequential order of definition, assessment and treatment of parasomnias. Interestingly,

the author defines the problem within the different stages of sleep: sleep onset, NREM

light and deep sleep and REM sleep. The author competently informs the reader about

the various types of parasomnias and the significance of identifying primary and

secondary parasomnias.

The final chapter successfully concludes the text by identifying and highlighting the

future steps needed in research and clinical practice to emphasize and elevate the current

practitioners focus on children with sleep disorders. He recommends service develop-

ments across all acute, primary and secondary service levels and on-going training

across the professions, in particular the medical specialities.

Overall, this book is well-written and clearly presented for a range of disciplines to use

as a resource tool or everyday guide depending on their speciality. The organization of

the text was easily read and helpfully interspersed with relevant case studies and

descriptive tables for further definition. Further, it may be easily referred to in clinical

practice, as each chapter conveniently concludes with an overview of the clinical

approach to diagnoses for each disorder, highlighting the main questions to be answered

throughout an assessment process.

In summary, this book not only provides an informative guide to the complex area of

children’s sleep disorders medicine but also offers the range of professionals working

with children a user-friendly clinical guide to assessing and treating sleep difficulties in

children of all ages and abilities.

Jessica Jones

Facing the Challenge, Unit 3B Lakeside Technology Park,

Phoenix Way, Llansamlet, Swansea SA7 9FL, UK

Equal Treatment for People with MentalRetardation: Having and Raising ChildrenEdited by Martha A. Field & Valerie A. Sanchez, Harvard University Press, Cambridge,

MA, vþ 432 pages, £30.95, ISBN 0-674-800086-9 (Cloth), 2000.

Parents with intellectual disabilities have become more visible in recent years especially

in the context of Social Services and Family Courts. At the same time, a literature is

emerging concerning a wide range of issues. This book represents a major overview of

the area, but at the same time has significant limitations. The authors are primarily

concerned with how law and social policy should address people with intellectual

disabilities, and concentrates on regulations about producing and raising children. The

book will be of most value in the United States as the authors confine themselves to US

law policy. The authors also, as the title suggests, are not impartial. They seek to provoke

thinking as well as inform.

The book begins by introducing the reader to some families and the experience of

parenting and the involvement of the state. The style becomes more formal as US public

policy past and present is reviewed. The authors then switch gear and examine who are

called ‘retarded’ (The term still favored by US institutions for people with intellectual

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# 2002 BILD Publications, Journal of Applied Research in Intellectual Disabilities, 15, 276–280

disabilities, the Federal and State Government, the press and used by the general

population.). In this section, details are provided on causes and systems of classification

along the history of intelligence testing. They are critical of intelligence testing but fail to

have taken on board the critiques of the 1980s which informed the diagnostic criteria now

used. They do not seem to be up to speed in this area.

The chapters on procreation and sterilization clearly establish the books context in US

law and will disappoint readers in the rest of the world. There are clearly legal arguments

and precedents that have occurred outside the US and which could have enriched the

discussion. The chapter on sterilization is balanced with a chapter on sex and contra-

ception. The authors address some of the difficult issues especially for parents as well as

the individual’s right to have a sex life. The issue of rights is also balanced against risks of

exploitation.

A chapter is devoted to issues of Guardianship. This has different meanings in

different countries. The US version is only discussed here. In the US Guardianship

deprives the individual of their civil rights and takes away rights to make decisions.

However, we are informed that such powers are used less frequently today.

The book then moves on to the topic of abortion. This again is set in an American

context, and I would advise readers to keep in mind aspects of US culture when reading

this.

The authors then address the issue of self-determination. They reject blanket rules or

laws restricting people with intellectual disabilities from making their own decisions.

They recognize that a small proportion will not be able to make choices and that the legal

system needs to be concerned with them. However, how we distinguish who they are is

not clear. They make case for equality over protection. However, the need for protection

for some people with intellectual disabilities needed to be more thoroughly addressed.

It is not until part IV of the book that parenting is addressed. Chapter 14 assesses US

views on parenting and examines the standards for evaluating parents in legal proceed-

ings. The authors identify that it is in neglect and abuse proceedings that parents with

intellectual disabilities most often come into contact with agencies. A critical review of

limited literature is provided, and the authors warn against the use of the available

research as a basis for making predictions of risk. In particular, they attack on the use of

IQ as a predictor. However, the authors’ concept of intelligence is limited to IQ scores.

Today, there is more interest on the relationship between cognitive capacity and the

development of capacities to evaluate and prioritize needs of others and their relation-

ship to parenting.

The chapters on Law and the Welfare System are situated in a US context. The

final chapter concerns proposals for reform. This makes difficult reading for those

unfamiliar with argument based on case law decisions. The authors aim is for

people with intellectual disabilities who have children to have the same rights as

everyone else. One thing that is clear is that access to legal representation and advice

is not so freely available in the US. The authors also promote self-determination but this

is often dependent on the availability of support programs for parents which also

need State funding. The authors conclude that some of the reforms they have put

forward would have large practical consequences. I would add financial consequences

to this.

Overall, the book contains a considerable amount of historical and legal information

which makes interesting reading. It is also a book on law and social policy in the US as

applied to people with intellectual disabilities who are parents. It lacks an international

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overview and has deficits when it strays from the authors’ area of expertise. However, it

is a welcome addition to the literature.

Dr Nigel Beail

Consultant Clinical Psychologist, The Keresforth Centre,

Off Broadway, Barnsley S70 6RS, UK

Parents as Care Managers: theExperiences of those Caring for YoungChildren with Cerebral PalsyGillian Bridge, Aldershot, Ashgate Publishing Ltd., xiþ 308 pages, ISBN 1844014-973-6

(hbk) (Price unknown), 1999.

This book concentrates on the increasing number of children with disabilities who are

cared for within their family home. Community-care planning has revealed the gap

between needs and resources available, and the author argues that as consequence of this

many carers may have to assume the role of their child’s care manager. The underlying

principles of recent legislation and guidance have highlighted the benefits of ‘normal

family life’. Acting as your child’s care manager can be the equivalent of a full-time

occupation requiring a range of skills and knowledge, and may be incompatible with the

requirements of daily living with a child with high dependency needs. The effect of

assuming this role may, therefore, be to distort ‘normal family life’, and this book examines

the types of role that the families have to assume, and how this impacts on their lives.

The book is based on a qualitative research study of 58 families undertaken between

1991 and 1994, and is divided into four main sections, punctuated throughout by quotes

from families and professionals. The first section describes the clinical and social aspects

of cerebral palsy, including its causes and types, the resulting impairments and

disabilities and the range of treatments and interventions available. It includes the

range of challenges that arise from diagnosis (delayed diagnosis, lack of information

available, false reassurances), and highlights the insensitivity with which some families

are informed: ‘‘. . . when I woke up there were five people round my bed. There were no

curtains. ‘Your daughter’s brain damaged’ they said.’’ This section provides a useful

overview of the complexity of cerebral palsy, including the ambiguities of diagnosis,

types, impairments, treatments and services associated with it. The social impact of

having cerebral palsy is discussed in relation to both the individual and the family.

The second section of the book concentrates on families and health-care services,

beginning with an examination of the historical context of government health policy and

identification of the issues related to the needs of children with disabilities. The author

then considers parents’ experiences of the range of professionals they have contact with,

which is revealed to be generally unsatisfactory in terms of quantity and quality. Part of

this section describes a case study highlighting the complexities of multidisciplinary

work exacerbated by limited resources. The author concludes that a parent-advisor

scheme has enormous potential to meet the counselling needs of families, and that Child

Development Teams have huge potential to find solutions to the problems currently

faced by families having children with disabilities.

Journal of Applied Research in Intellectual Disabilities 279


The third section of the book considers education, the complexities of which require

contact with a different range of professionals. At the same time, families’ involvement

with health-care needs (professionals, services and treatments) are continued, and must

be integrated into a care package that includes education. The context of education is

introduced by highlighting two main themes underpinning policy and provision: the

rights of all children to educational opportunities, and the change in education policy,

provision and practice as a result of the Education Reform Act 1988. The history of

special education is reviewed and the importance of the Statement of Special Educational

Needs is highlighted. Pre-school playgroups and portage are considered, and the

research reveals that small numbers of children with cerebral palsy make use of these.

The final section of the book considers families’ and the personal social services and

concludes that there is very little consistency in how the local authorities respond to

parental requests for support, and that the gap between Children Act expectations and

reality for parents of children with cerebral palsy is large. There is a clear need for

professional coordination of treatments and service. ‘Social workers’ knowledge of

family and social policy systems; their knowledge of psychology and how people react

under stress; their repertoire of interventive skills and their value systems might assist in

attaining some emotional equilibrium which might enable parents to manage their lives

and their children’s packages of care more effectively.’

This book effectively combines the useful factual information about cerebral palsy

with the impact it has on the life of the child and his/her family, and demonstrates

through the use of direct quotes from parent/carers, the complex reality of daily life. It is

easy to read and is punctuated by diagrams and charts, which present useful informa-

tion, although the method of shading could be improved for clarity. It highlights the

diversity of individual need, the diversity of individual experiences and the need for

improvement and a less-fragmented approach. The author acknowledges that the

participants in this research were predominantly from middle class backgrounds,

and that research findings from other socioeconomic groups may vary. It is also

acknowledged that when the book was written (1999), changes in government policy

and guidance were being developed. Nevertheless, the book effectively confronts the

complex range of issues that the families have to negotiate, which must be acknowledged

in order to find effective solutions.

As the parent of a child with severe learning disabilities and seriously challenging

behaviour, I can identify directly with the issues raised by the families that participated

in this study. I would recommend it not only to families with a child with disabilities, but

also to professionals working in health, social services and education. The author

systematically examines the complex range of all aspects of life with a child with a

disability: too often professionals cannot see beyond their own particular field of

expertise and fail to consider the complete picture.

Vivien Cooper

The Challenging Behaviour Foundation,

32 Twydall Lane, Gillingham, Kent ME8 6HX, UK

280 Journal of Applied Research in Intellectual Disabilities


a clinical guide to sleep disorders in children and adolescents

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