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The Voices And Choices of Children and Young People Who Use

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					Voices and Choices of Children and Young
  People Who Use Assisted Ventilation




Bibliography and Analysis of the Literature
                        by

            John Sudbery and Jane Noyes
First published in the United Kingdom in 1999 by:
University of Salford


 University of Salford and the
Joseph Rowntree Foundation, 1999


ISBN 0 90289 624 5


John Sudbery is a lecturer in the Department of Social Work at the University of Salford.

Jane Noyes is a senior lecturer in the Department of Nursing at the University of Salford.

Both authors are members of the Institute for Health Research at the University of Salford.

Cartoons by Peter Green, a student at the University of Salford undertaking a HND in Graphic
Design.

Cover design by Peter Finch, a student at the University of Salford undertaking a MSc in Managing
Information Technology.




The Joseph Rowntree Foundation has supported this project as part of its programme of research
and innovative development projects, which it hopes will be of value to policy makers and
practitioners. The facts presented and the views expressed in this report, however, are those of the
authors and not necessarily those of the Foundation.

The statements and opinions contained within this publication are solely those of the authors and not
of the University of Salford. The University of Salford disclaim responsibility for any injury to persons
or property resulting from any material published in this publication.




Further copies may be obtained from:

The Administrator
Institute for Health Research
University of Salford
Manchester
M5 4WT
Tel. + 44 (0) 161 295 5000



Printed and bound by:
University of Salford
Reprographics Unit
Manchester
M5 4WT
SECTION 1



INTRODUCTION: BACKGROUND, PURPOSE AND SCOPE OF THIS REVIEW

This bibliography and literature analysis was carried out as part of a study of the experiences
and views of children and young people who are dependent for their breathing on mechanical
ventilators (Noyes, 1999). The literature review was undertaken initially to provide the context
for the empirical research. It also reflects exploration of the issues that arose during the course
of the work. In presenting it for publication, we have attempted to combine these research-
based purposes with a presentation for practitioners (in health or social care), policy makers
and educators.


The children

This work is concerned with children and young people who are medically stable but whose life
depends on modern "high-tech" support. The ventilation equipment may be portable and
relatively unobtrusive or may be part of substantial technology that keeps a child effectively
immobilised. The technology is varied and constantly developing. Mechanical ventilation may be
needed 24 hours a day or for limited periods, for example during sleep. The need for long-term
ventilation may arise from a range of congenital conditions or from trauma such as a road traffic
accident. Examples and more precise definitions are given by Canlas-Yamsuan et al (1993),
Panitch et al (1996); Jardine and Wallis (1998); or Noyes (1999); greater detail from a clinical
perspective may be found in Samuels (1996), or Kerr (1997).


A survey of all relevant medical specialists in the United Kingdom (UK) identified 141 such
children at the beginning of 1998 (Jardine et al, 1999). Of these, 93 (68%) lived at home. It has
been difficult to establish authoritative statistics for the UK before this, although the literature
invariably refers to increasing numbers, resulting from improved survival rates from childhood
trauma and illness, and more advanced technology. Robinson (1990), using more restricted
criteria and a different method, reported an increase from 1 case in 1975 to 24 per year in 1988.
As Aday and Wegener pointed out in 1988, children and young people who use assisted
ventilation form a heterogeneous group. Noyes et al (1999) summarise the main difficulties in
attempting to use routine National Health Service (NHS) data to identify the relevant statistics.
Due to the difficulties involved in locating this heterogeneous group of children and young people,
it is not known how accurate Jardine’s survey is at capturing the entire population of children and
young people who use assisted ventilation in the UK (Jardine et al, 1999). Without accurate


                                                 3
figures, it is difficult to monitor the incidence and prevalence of cases and plan services for the
future.


Fraser et al (1997) found that between January and March 1996 12% of beds on intensive care
units in England and Wales were occupied by these medically stable children who were
dependent on ventilators. (18 children in 8 units out of a total of 24 Units; 100% response rate to
the survey). James (1996) stated in a letter to the British Medical Journal that 42% of beds on
intensive care units are “blocked” from their primary function because of the lack of alternative
facilities for children who require assisted ventilation.


Specialist hospital facilities for children and young people who are dependent on ventilators are
scarce and may be distant from the family home. Many district general hospitals are unable or
unwilling to provide a child’s treatment because of their dependency on a ventilator (Noyes,
1999). In addition to the individual psychosocial problems caused by a “well” child living in a
specialist hospital environment, problems are also caused for service provision and planning. In
the extreme case, the occupancy of scarce intensive care facilities by a child who is not ill can
have fatal consequences for other children (James, 1996; Ashworth, 1996; Fraser et al, 1997).


Following the report to the Chief Executive of the NHS (Department of Health (DoH), 1997a),
regional Health Authorities in the UK have been required to present their strategies and
specification about the management of services to these patients who are relatively small in
number but high in cost. The findings from Noyes’ (1999) study have been used by regional
Health Authorities to develop their strategies (NHS, 1999). It is likely that the pattern for service
delivery will be the creation of lead centres associated with paediatric intensive care facilities.
These will provide child-centred longer term support for young people using assisted ventilation,
both on site and as a support service for local community provision. It is clear that strategic and
proactive attention has to be paid to these citizens if their needs are to be met and their rights
respected.


The child dependent on a ventilator can face significant problems in “oral” communication. The
purpose of Noyes’ (1999) research was to work with the young people to describe their views and
experiences of their health, social care and education, to describe their aspirations for the future,
and by publishing the report to influence the range of choices made available to them.




                                                    4
SECTION 2



OVERVIEW OF THE LITERATURE SEARCH AND ANALYSIS

The review first considers conceptual and methodological issues in carrying out this literature
search and analysis (Sections 3 and 4). This is followed by a central section, the Psychosocial
Picture, (Section 5) which presents material from the perspectives of the child or young person
and their family. The subsequent sections examine the literature which deals with Services,
The Law and with Finance (Sections 6 to 8) and is followed by a summary of the key messages
which emerged from our review (Section 9). Forming the second half of the review is the
Bibliography.


Method – how this review was carried out

There is now a science of systematic literature reviewing which is an essential component of
evidence-based     practice   in   medicine   and    social   care   (Centre    for   Reviews    and
Dissemination,1996; Beresford et al, 1996; Alderson et al, 1996; Long and Bitzer, 1997). It is well-
established that only this systematic searching and review allows for accurate evaluation and
aggregation of quantitative outcomes from different studies performed about a particular
treatment or condition.


It will be seen, however, that the publications included in this review are diverse. A limited number
are quantitative outcome studies (including a few randomised control trials or other experiments);
some are survey studies; many are qualitative empirical studies, including some case study
reports; some are legal texts or commentaries; a substantial number are official guidance or
regulation; and some are conceptual and analytical, examining for example the question of rights,
the conception of disability, the elements of attachment. By strictly applying rigid criteria and
excluding all but the highest quality empirical studies, systematic review has the effect of
narrowing down the studies considered. This outcome is in many respects in opposition to a
central feature of the present review which aims to identify and appraise the range of
psychosocial factors which are significant to children and young people who are dependent on
assisted ventilation.


Higgins and Pinkerton (1998) make proposals for the introduction of more systematic search and
review processes for child care research, and criteria have been suggested for the critical
appraisal of qualitative research (Medical Sociology Group, 1996; Evidence Based Mental Health,


                                                 5
1997; Popay et al, 1998). These have been significant influences on the strategy which resulted
in the present publication.
In the present publication, working within limited resources, we have had to strike a balance
between breadth of coverage and depth of critical review. The authors' initial knowledge of the
literature on the subject was supplemented by a search of Medline, CINAHL, and PsychINFO,
using the terms "ventilator", "dependent", "children" and "technology". A similar search was made
of SIGLE, the bibliographic database of “grey” literature such as internal reports from UK Health
Authorities or Social Service Departments. From the outcome of this, items were selected for
review which focused on the social, psychological and organisational aspects. Items from this
search in turn provided additional references.


This systematic search was combined with the authors' knowledge of factors affecting the
families of children with disabilities or complex medical needs. There is a much broader and
diverse literature dealing with these subjects, only a proportion of which is relevant to children and
young people who use assisted ventilation. In identifying items for the bibliography and review
from this perspective, we relied on our existing knowledge, additional references which arose
from the review process and advice from relevant experts and specialist bodies. This included the
use of literature updating services to which we make reference in the appropriate sections of this
work.


On the one hand, themes which emerged from the systematic search (such as attachment and
developmental needs of children in hospital) were explored through this more broadly-based
literature. At the same time, attention was paid to the themes which were emphasised in the
disability literature (such as the voice of the child, the concepts of disability, the significance of
appropriate housing) which tended not to be in evidence in the systematic search.


Further consultation and advice was sought from relevant experts and specialist bodies. These
are too numerous to list here comprehensively, but included: librarians of the Manchester
Children’s Hospital NHS Trust (UK), the National Primary Care Research and Resource Centre
(Universities of Manchester and Salford), the Public Health Research and Resource Centre
(University of Salford), the Joseph Rowntree Foundation (UK), parents' self-help associations (UK
and United States of America (USA)), the Paediatric Intensive Care Society (UK), the Royal
College of Nursing (UK), the Spinal Injuries Association (UK), the UK Long-Term Paediatric
Ventilation Group, and the web-based International Ventilator-Users' Network (USA).


Any bibliography and review has to be selective. From the literature about children dependent on
ventilators, we generally excluded purely clinical literature. We have tried to be comprehensive


                                                  6
without claiming to be exhaustive in including those dealing with social factors. A few references
are included about adults who are dependent on ventilators where the personal, organisational or
social issues seem generally relevant. We have attempted to portray a fairly thorough picture of
the literature referring to technology dependent children and to present a balanced picture of the
literature about children with disabilities as it applies to these particular young people and their
families. There are certain areas of literature which are central to some of the children or young
people, but are specialist areas of study in their own right with a voluminous and diverse literature
(ethnicity and culture in relation to children with disabilities, for example, or problems of child
abuse and child protection). In these subjects, we have attempted to summarise some key
features and include references to some relevant core literature. Unless there has been specific
reason to do otherwise, we have limited our review to literature published since 1987. Reference
is made to three further limitations at the end of the next section.


Our initial overview of the literature provided the main dimensions to the text which follows. Items
reviewed were coded according to areas to which they referred, and the review was written by
referring to the relevant literature, some modifications occurring to the initial structure as we
proceeded.


Thus we do not present a systematic critical review, although we have provided a resource on
which others can create a range of systematic reviews. A systematic critical review would
identify one detailed area of the material we present; after selecting material based on specific
inclusion criteria a grid of questions would be applied to each study in turn, enabling the
production of a uniform and formal database which could then be synthesised (Centre for
Reviews and Dissemination, 1996; Higgins and Pinkerton, 1998).


Mapping the literature; outcome of the literature search; limitations

There is only a limited literature about the social circumstances and needs specifically of children
or young people whose breathing is dependent on assisted ventilation. No doubt this reflects, at
least in part, that even twenty years ago, few such individuals would have been able to survive.


The bibliography contains over 800 references. Approximately 200 of the references are clinical
papers, written primarily by physicians, therapists and nurses, which nevertheless refer to
organisation, procedure, discharge and psychosocial factors. Of these, approximately 100 relate
to children or young people dependent on ventilators, (the others being relevant articles written
about "children dependent on technology" and “medically fragile children” that mostly include




                                                  7
some children who are dependent on ventilators within a larger sample). The majority of these
clinical papers originate from the USA with only about 40 originating in the UK.
We have included 3 literature reviews. Baldwin and Carlisle (1994) are the most comprehensive
in their examination, but their interest is more generic, referring to disabled children in general
and their families. Shipley’s study (1997), like Kirk's (1998) relates to the care at home of children
dependent on medical technology. None of the three spans the particular area of the present
study, but all are relevant, and we have made extensive use of their work.


About 350 of the items in the bibliography are relevant non-clinical books, chapters or articles
about the experience of children and their families when a child has complex medical needs
(some of whom use assisted ventilation) or is disabled.           A minimum of 70 items in the
bibliography are published or commissioned by UK charitable foundations with specific
commitments to research, publishing and policy action in the area under consideration – the
Joseph Rowntree Foundation, the King’s Fund, Barnardos, NCH Action for Children and the
National Children’s Bureau. In addition, a substantial range of other books, chapters or articles
are based on work supported or commissioned by them. Significant series of reports were also
generated by the Social Policy Research Unit at York University and the Norah Fry Research
Centre at Bristol University. Since this bibliography will date as soon as it is published, the
relevant contact addresses for these and other organisations are included at the end of the
bibliography. Many of the organisations have internet addresses. Summaries of the reports from
the Joseph Rowntree Foundation are available on their website.


Noyes' study (1999) with which this literature survey is associated relates to the ‘voices and
choices’ of children who are “ventilator-dependent”. Our review highlights the dearth of studies in
this area which are centred on the views of the young people themselves.              Twenty of the
references in the bibliography therefore highlight issues surrounding the process of listening to
the voice of the child or young person in health care or research. The starting point of this review
is the predicament of young people and their families who are identified by a particular form of
medical need. As the review identifies early on, there is a significant literature which argues that
medically determined analyses of impairment have distorted understanding, responses and
services in relation to socially created disability, and a few key references are specifically to this
literature.


The remainder of the bibliography includes relevant UK Government reports, guidance and law
as well as a selection of references to aspects which emerged as significant in the course of the
research or the literature review, such as education, housing, child abuse and protection, and
children's experiences in hospital. Of particular significance amongst official documents are the


                                                  8
reports from the National Health Service centrally (DoH, 1997a and b) and regionally (NHS,
1999).


Systematic official concern in the USA about the subject was, however, in evidence a decade
earlier than in the UK, and references are therefore given to two particularly relevant USA
Government reports (US Office of Technology Assessment, 1987 and US Department for Health
and Human Services, 1988). For completeness we have included a sample of literature about the
specifics of equipment to aid daily living and about rights and social benefits available in the UK.


The children and young people to whom this review relates do not necessarily identify themselves
as "disabled" (Noyes, 1999). It must be born in mind that further research may demonstrate that
our application of general statements may have to be modified because of the specific features of
the lives of children to whom we refer.


Limitations of this study


In Sections 5 and 8 we indicate that further searches would be desirable about the topics
"communication", “rehabilitation” and "service provision and co-ordination". In relation to these
subjects, our search strategy produced extremely limited results, and we did not have the
resources to carry out the more penetrating additional work which would be necessary to
establish to the true range of any relevant literature.


Within the general heading of “psychosocial” literature we have not explored or reviewed the
writing about brothers and sisters, or about extended family members such as grandparents. This
is not because we ignored their significance. It reflects our decision that when there was no
literature specific to them identified by our search strategies, we did not have the resources to
remedy this particular gap.


Our approach to this subject has been primarily through the literature which would be described
as "health-related" or "social science based", combined with appraisal of official and statutory
documents. The principal limitation of this approach has been the neglect of any specialist
"educational", "housing" or "employment" literature which was not found under the earlier
headings.




                                                  9
SECTION 3



UNDERSTANDING SICKNESS, IMPAIRMENT AND DISABILITY

In the last two decades there has been lively discussion about the way that disability is
understood. For example, disabled writers such as Oliver or Shakespeare (Oliver, 1996a;
Shakespeare and Watson, 1998) have argued forcibly that a focus on medical conditions and
associated physical impairment can be quite beside the point, indeed actively misleading in
understanding disability. The strongest version of this writing argues that disability is primarily
created by social and environmental restrictions. These are analysed as forms of social
oppression (Abberley, 1987, 1992). The variety of such accounts is illustrated by the insight that
Deaf people form a cultural and linguistic community. For professionals to relate to Deaf children
and their parents in terms primarily of physiological abnormality can all too easily result in such
injustices such as the (continuing) attempt to deprive Deaf people of their right to use their own
language, which is British Sign Language (Parasinis, 1997). This cluster of related traditions
places emphasis on reformulating the concepts by which physiological disease or disorder and
disability are understood; all emphasise that medical, social and research activities in this context
are intrinsically political activities; all emphasise the primacy of the voice of the disabled person
over that of others, being especially critical of the values and results when professionals or carers
speak instead of the disabled person. Until recently there has, perhaps as a result, been less
development in the analysis of the way in which a third party (a parent, for example, or a sibling)
or a social system (such as a family) is disabled by the disability of another person. There is also
now greater analysis of the results which occur because of the symbiotic emotional relationship
which many see as intrinsic to the early relationship between parent and child.


Swain and French (1998) present a clear account of the way in which “care” (a concept with
numerous positive connotations) can come to be an oppressive and disabling relationship. This is
particularly caused by the pervasive introduction of “normality-abnormality” perceptions. Their
work is not specific to young people who are technology dependent or have complex medical
needs. In the absence of specific research which indicates the contrary, however, it may be
thought directly applicable to them. The majority of clinical literature surveyed in this review tends
to refer to children who are “ventilator-dependent” in terms of diagnosis, loss of body function and
prescribed therapeutic interventions. In contrast, authors such as Kirk and Glendinning (1998)
explore the complementary dynamics when looking at the difference between “caring” as an
occupational or policy description and the activities of “parenting" required in situations such as
those                                        considered                                         here.


                                                 10
SECTION 4



THE VOICE OF THE CHILD

In 1962, Aries published a work which drew attention to the degree to which the concept of
childhood is socially and culturally constructed rather than intrinsic to human development (Aries,
1962). Since that time, a substantial literature has reflected the increasing debates about the way
in which "the voice of the child" is heard and responded to. Differing beliefs about competence
and autonomy, about vulnerability and dependence, and about the nature of citizenship result in
different social policies, different legal rights, different legal responsibilities and different
participation in complex medical processes. A concise outline of relevant aspects of these
debates is given by McNeish (1999).


In a widely quoted work, Fox Harding (1991) analyses how different value positions about these
dimensions of childhood result in different systems of social policy. On the one hand, she
identifies a system of attitudes in which childhood is viewed as a developmental period of
preparation for adulthood. Adults are vested with the responsibility of the welfare of children, who
are understood to be essentially vulnerable and lacking in civic competence. Recent debates
within this framework may be characteristically about the degree to which the adults'
responsibilities should rest with parents or the State. Advocates of children's liberation on the
other hand (for example Holt, 1975) argue that the rights, privileges and duties of citizens should
have no chronological distinctions attached. They should be available to any child who wishes to
make use of them. The United Nations Convention on the Rights of the Child (1989) and the
Children Act (1989) (England) represent a shift from a highly "paternalist" view to a more rights-
based approach in recognising the rights of children to adult protection alongside a right to
participate which increases with "age and understanding" (Morris, 1998a,b).


At a more detailed level, Davie et al (1996) have edited a collection of papers by different
specialists which look at ways to promote the voice of the child within a range of contemporary
services within the UK. These services include education, mental health, the law, psychology
services, and social services. They pay attention to the topic in the context of a multicultural
society, but in relation to disability, detailed consideration is given only to children with mental
health or learning difficulties. They do not emphasise the issues surrounding research about
children; there is therefore no mention of the growing calls for the involvement of children in
research not just as partners but as part of the research team (see Alderson, 1995; Morrow and


                                                11
Richards, 1996; Ward, 1997). A survey of the social attitudes of young people (Roberts and
Sachdev, 1996) reports on the attitudes of young people themselves to age-related restrictions on
civil rights. In general, this review and Noyes’ (1999) findings about children who use assisted
ventilation echo those of the literature reviews by Baldwin and Carlisle (1994) and Shipley (1997),
that there is an absence of research in which the voices of the children and young people are
used as expert opinion. Many of the children (and parents) in Noyes’ study were not listened to or
involved in the decisions concerning them.


The children and young people who are the subjects of this review and Noyes’ (1999) study
remain alive only through the complex technical skilled intervention of highly trained adults. This
being so, it is hardly surprising that the natural traditions of the professional people involved may
be heavily "protectionist", highly aware of the vulnerability of those they assist and of the
potentially fatal consequences of non-intervention. In this context, one function of the research is
to examine reflectively how the different views about rights of choice in general apply to these
particular young people who by definition are included in Noyes’ study because the expression of
their physical voice can be severely impeded.


There are significant questions about the implementation of rights which apply to this group of
young people. Noyes (1999) concludes the report of her study by comparing the findings to the
UN Convention on the Rights of the Child (1989). Many of the children did not receive the
rights and services outlined in the Convention. In general, there is at the moment a dearth of
literature that examines or reports on the issues involved.




                                                 12
SECTION 5



THE PSYCHOSOCIAL PICTURE

The psychosocial tradition looks at “the person-in-the-situation”, emphasising particularly the
importance of relationships. In this central section of the review we analyse the literature about
the young people and their families from this perspective. There are some difficulties in
structuring this logically and appropriately. The experience of parents, for example, is relevant
to every section, but they are referred to explicitly in only two of the twelve subheadings. We
have referred earlier to the limitations of this review in respect of siblings and other family
members; in respect of speech and communication; rehabilitation; and about education.


The experience of being dependent on mechanical ventilation

There are few autobiographical accounts of the experiences of children and young people who
use assisted ventilation. The British Broadcasting Corporation (BBC, 1997) made a television
documentary about Nicholas Stephens, a young man who became dependent on a ventilator
as a child following a rare infection. The documentary explored Nicholas’ childhood, his
parent’s ingenuity in rehabilitating their son, and followed Nicholas through his first year as a
student reading law at Oxford University. Nicholas acted as an expert advisor to Noyes’ study
until his unexpected death. The report of Noyes' study (Noyes, 1999) is dedicated to Nicholas
Stephens and his family.


A relevant work from an adult’s perspective is the autobiography of Christopher Reeve (1998).
Having portrayed Superman in the popular film, he was subsequently injured in a riding
accident. His writing has been acclaimed by some people (see, for example, Rhodes, 1998) as
a symbolic rebuke to those who see only the limitations of people with a disability. He has been
put forward as a "role model" for children who require assisted ventilation. On the other hand,
this portrayal of his autobiography is seen by others to ignore the quite exceptional social
circumstances and resources which characterised his situation. These are seen to create for
him possibilities which are not available to most “ventilator-dependent” children. Perhaps, it is
argued, the biography embodies the wishes of parents and young people rather than reflecting
their realities.




                                               13
50% of Noyes’ sample of 18 young people had suffered severe medical trauma, and Bauby
(1997) presents a remarkable account of the experience of an adult now dependent on a
ventilator and other life support technology, emerging from a coma. Viner, a doctor, describes
graphically some of the anxieties, dangers and difficulties when his breathing relied on the use
of a ventilator (Viner, 1985).


There are also a limited number of other autobiographical accounts written by adults about
their experiences with assisted ventilation. In the main, these relate to experience of childhood
poliomyelitis during the late 1940s and 1950s.


The direct voice of children and young people with serious medical conditions is conveyed
clearly in a short work by Closs (1998). She uses children’s accounts to focus on their quality of
life, and identifies the following themes: the individual's understanding of their condition;
feelings of sameness and difference; educational experience and attainments; peer and other
friendships;   family,    upbringing,   and      degree   of   independence;     experience     of
medical/paramedical services and hospital life; practical and emotional coping strategies; future
plans and positive outcomes. Writings by the Chailey Young Person's Group (1998) draw on
and express the direct accounts of children and young people themselves: this is in the context
of having a complex medical condition and living in residential care.


A child who is dependent on assisted ventilation lives with a level of risk that other children do
not. For example, children who are dependent on 24 hour ventilation require immediate
intervention should they become disconnected from the ventilator. We located no modern study
reporting the incidence of accidental disconnections from ventilators. Some time ago, in 1984,
Janowski’s study found that "disconnections are common …... they occur so often as to be
considered routine". They pointed out that it is impossible to determine the absolute frequency
of disconnections. In 1990, Quint et al found that every family experienced some kind of
difficulty with the equipment (up to twenty times per year for two thirds of the families in the
study).


Outcomes for children who live at home and use assisted ventilation were the subject of
research by Canlas-Yamsuam et al (1993) which examined retrospective data over a period of
15 years (see also Marcus et al, 1991; Samuels, 1996). They concluded that "ventilator-
dependent children can be successfully managed at home with few non-elective hospital re-
admissions". This is in accordance with the policy directions set out by the UK National Co-
ordinating Group on Paediatric Intensive Care in their report to the Chief Executive of the NHS



                                                 14
(DoH 1997a), and the regional specifications which derive from this report, such as that for the
North West region of the NHS (NHS, 1999).


Communication and rehabilitation

The search strategy described earlier in this report produced only a few references on the topic
of communication and the related issue of rehabilitation (for example, Browder et al, 1986;
Douglas et al, 1988; Burkett, 1989; Leder, 1990; Stephens and Cottle, 1990; Connolly and
Shekleton, 1991; Bach et al, 1992; Parette and Parette, 1992; Platts and Fraser, 1993; Fraser et
al, 1998b).    Although the earlier works are dated by the technology they describe, the
associated discussion of quality of life issues and the level of independence achieved by the
young people remains relevant.


We regret that limitations of resources prevented us from carrying out a more penetrating search.
This would cover speech therapy literature which is not indexed in the bibliographic databases,
and would investigate the rapidly changing field of digital communications technology.           For
example, we know that in the UK the Joseph Rowntree Foundation is leading the development of
so called “smart” houses. “Smart” houses are designed to enable people with complex
impairments to live as independently as possible (Dudde, 1998). Without additional enquiry in
this field, it would be wrong to presume that the relevant literature is small.


The importance of communication for the “ventilator-dependent” adult is explored by Leder
(1990). Connolly and Shekleton (1991) analyse research findings about strategies for
communicating with individuals who use assisted ventilation. They make no reference to the
age of their subjects, which is evidently concerned primarily with adults.


Although children using assisted ventilation frequently have limitations in the use of their speaking
voice (especially those with a tracheostomy), parents often comment on the exceptional
communication skills that their children develop. These skills are cultivated from the child’s need
to convey their wants and needs. Parents and those who spend significant periods of time in
close proximity with the child learn to interpret the message being communicated. The young
people in Noyes’ (1999) study, however, were frequently cared for by professionals that did not
always understand the ways in which they communicated.


The inability to communicate when dependent on an electrically-powered ventilator is a major
source of fear and anxiety (Ashworth, 1980; Connolly and Shekleton, 1991). Viner (1985) and
Reeve (1998), adults who describe the experience of this dependence both refer, for example, to


                                                  15
the horror which occurs when someone accidentally disconnects the equipment and they cannot
call for help. If not addressed, this impairment of communication is clearly one source of the
sense of dependency and lack of control which undermines the quality of life for children using
assisted ventilation. Noyes (1999) found that the adequacy of communications technology and
the attitudes and training of staff were essential distinguishing factors between good and poor
placements both in hospital and in school.


In carrying out the research, useful general references were found to be Mahon et al (1996),
NSPCC (1997), Morris (1998b), Ability magazine. Relevant UK organisations include: Access to
Communication and Technology (ACT), the Assistive Communications Aids Centre, (ACS), the
Communication Clinic at Guys Hospital, KEYCOM, the National Association of Laryngectomy
clinics, the Switch, Communication and Mobility Provision (SCAMP), the Federation of Access
Centres, the Association for All Speech Impaired Children, and Aids to Communication in
Education (ACE). Addresses for these organisations are provided at the end of the bibliography.


Emotional and developmental needs, including attachment

An established framework for child-centred services came later to medical institutions caring
for children for extended periods than to other personal services in the UK (Oswin 1998). In
some respects this is paradoxical since some of the most influential work about the core
emotional needs of children and the extreme difficulty of meeting these needs even in well-
intentioned institutions related to children in hospital. The work of Bowlby (for example, 1973)
and the Robertsons (1989) demonstrated graphically half a century ago the attachment needs
of children and how it is difficult to meet these needs within routines which involve staff coming
and going for career reasons, different staff putting a child to bed and getting them up in the
morning. There are also a host of other exigencies which militate against a securely attached
child enlarging their exploration of the outer social and material world which continues over a
period of years.     Related work has examined the complementary attachment behaviour,
emotions and needs of parents and other caregivers (Bretherton et al, 1989; Darbyshire,
1996). In general, there is now little dispute about the need to support the attachment
relationship of parents and children during child hospitalisation and to take them into account in
"case management" (National Association of Health Authorities and Trusts (NAHAT), undated;
DoH, 1991a; Action for Sick Children (ASC), 1996 and 1998). The work of ASC (formerly the
National Association for the Welfare of Children in Hospital, NAWCH) to ensure that parents
can stay with their children is not contested, and the formal ideology of children's medical
facilities is to enable parents to be involved during their children's hospitalisation (for example
DoH, 1997a; NHS, 1999).        Regrettably, Noyes’ (1999) study confirms the findings of the


                                                16
literature (Action for Sick Children 1998) that often the issues of resourcing and staff
support/development continue to prevent the making of adequate arrangements for parental
accommodation and involvement. Frank illustrations of a hospital attempting to meet these
needs for a “ventilator-dependent” child can be found in Britton and Johnstone (1993).
Surprisingly, an otherwise perceptive study by Patterson and Geber (1991) about the
prevention of emotional problems fails to examine the issues surrounding attachment and life in
hospital.


If a young person can only breathe if adults provide and maintain complex mechanical technology
they have a distinctive experience of life. They are constantly vulnerable, for example, in a way
that most others are not. They have to place continuing trust in others. If because of a severe
accident they have faced death or if they have received treatment for a life-threatening condition
since birth, their emotional life has matured through experiences, fantasies, fears and hopes
which are distinctive.


There is only a limited literature about children dependent on ventilation which addresses these
matters (cf Clark 1986 in relation to adults). Searching the more general literature, there were few
accounts which adequately attempted to capture and analyse the experience of emotional
development in the context of severe disability or complex medical needs. The difficulty of
creating competent research accounts is illustrated by the major study on which Elizabeth
Anderson was working at the time of her death and published under the title Disability in
Adolescence (Anderson and Clark, 1982). This is a study specifically of young people with spina
bifida or cerebral palsy. It examines social life, fears, aspirations, and other feelings about
marriage and sex, psychological adjustment and problems, the factors relevant to transition to
adult life. The authors stress that each of the 150 or so respondents was to them a unique
individual with interests, wishes, aspirations, needs and fears. As they state in their Foreword,
however, they are aware that their presentation of statistical material about psychological
problems, sexual knowledge and so on in tables showing numbers, percentages and standard
deviations, "above and below average" and correlating the statistics for disabled and non-
disabled children misrepresent this attitude. Their research was carried out in 1978, and the time-
specific language combines with the presentation to appear to introduce what Swain and French
(1998) see as the insidious but pervasive introduction of normality-abnormality judgements into
the discourse about disability.


The research by Noyes (1999) makes a contribution towards the filling of this gap in relation to
children and young people who are “ventilator-dependent”. In the broader field of children with
disabilities, relevant contributions are made by Dorner (1976), Coffield et al (1986), Cadman et al


                                                17
(1987), Breslau and Prabucki (1987), Thomas et al (1988), Bax (1991), Hirst and Glendinning
(1991), and Morris (1998b,c).


Educational needs

The UK survey by Jardine et al (1999) found that of the 81 children of school age who lived at
home, 43 (53%) attended mainstream school. Only 2 required a home tutor. Thirty-six children
attended schools specifically for children with special educational needs. Of the 15 children of
school age in hospital, 3 attended the hospital school and 12 attended school in the community.
Three of these 12 continued attending their normal mainstream school.


It is outside the scope of this review to provide an examination of the literature about the
educational needs of children who use assisted ventilation, although in Section 6 we provide an
overview of some of the issues which arise about the organisation of the service. We
acknowledge this limitation with regret, for educational experience is amongst the most significant
aspects of a young person’s life (for example, Alderson and Goodey, 1998; Alderson, 1999).
Intellectual stimulation and development, social interaction in school, the acquisition of
qualifications are key components in personal development (see for example: Lehr, 1990, Izen
and Brown, 1991; Parette et al, 1994).


For children away from home, we know from other contexts that educational experience and
continuity were included in the most important, if neglected, features of their lives (evidence
summarised in Jackson and Thomas, 1999, p 3,53,67). This valuing of education is reflected in
the views of the young people in the study with which this review is associated (Noyes, 1999).
They reported significant examples of good practice and also disappointment at the discontinuity
between hospitals, the low priority on education in some long-term medical settings, barriers to
entering the school of their choice when living at home, insufficient classroom support, and
sometimes damaging shortfalls in the communication facilities and staff skills which were
essential in their education. Many of the problems experienced with education are similar to those
reported in a review of current practice in the USA by Capen and Dedlow (1998).




                                                18
Play and leisure

Although dependence on a ventilator makes no difference to the human need for play and
leisure, research indicates that disabled children experience greatly restricted opportunities (Hirst
and Baldwin, 1994). Some of the young people in Noyes’ (1999) study lived in unsuitable housing
that restricted the type of activities they could participate in. Others were disabled by a lack of
transport and the ability to get out and meet with friends. Human play and leisure activities are in
general highly associated with risk-taking and “illicit” activities (Dorn and South, 1989). The
expectation of adult surveillance of the children to whom this review refers, and the
accompanying assumption by adults of public “responsibility” make it hard, however, for adults in
a public institutional setting to accept this. Cavet (1998) reviews a range of the issues involved in
relation to disabled children in general.


Friendship and relationship needs

Noyes’ study relates to children and young people who vary greatly in the degree to which they
have freedom to arrange their own lives and relationships (Noyes, 1999, chapter 1 and
Appendix A, Wallis and Jardine, 1998). Thus, at one end of the continuum, a child may be
largely immobilised in hospital by the lack of a portable ventilator and live much of her/his
experience within a confined space. In these circumstances, he or she is normally under
almost constant surveillance by adults, usually not members of their family. The children with
whom they can interact are restricted to a small group of people not selected by themselves.
This small group never stays constant for long as other children come and go from hospital.
There are children who have greater freedom than this, but who are nevertheless confined to a
single hospital ward with constant surveillance. Recognising the distortions this creates in
comparison with the experience of other children, hospitals may attempt to extend the
experience of such a child. In the context of the child’s vulnerability to accidental disconnection
or other accident, however, (and of course the subsequent vulnerability of the Institution and
staff should anything untoward happen), Gilgoff and Helgren, (1992) describe the elaborate
regime, protocols, contracts, restrictions and training which allow such a child to go down the
corridor to the physiotherapy department or to take part in play activities off the ward. Given
this degree of protectiveness in the face of the “3 minute window” available to some children
should there be an accident, it is a major step for responsible publicly accountable staff to allow
the child the freedom to go outside the hospital grounds even for very limited periods, to
explore the world albeit under supervision and to make and leave friends in a wider
environment. At the other end of the continuum, however, are children who live at home, attend
normal schools and are restricted only at night, when they receive ventilation by means of a
nasal mask.

                                                 19
Friendships and peer influence are amongst the most potent features in human development
and it is known that peer social support plays a significant part in effective problem-solving
(Asher and Gottman, 1983; Amado, 1993; Strulley and Strulley, 1993).           It is one of the
challenges for carers whether in hospital, at home or in a communal living establishment to
create the environment in which a young person can make and break friendship attachments in
privacy and in as open and wide a social environment as possible. Some of the young people
in Noyes’ (1999) study had few friends. In particular they wanted to meet non-disabled people
and widen their peer group. On the positive side are the findings of the study by Gorman et al
(1998) that physically disabled children judged themselves as more popular than they would
have been if they were not disabled.


Employment

We found no reliable information about the possibilities of employment amongst adults and
young people who use long-term assisted ventilation. None of the sample in Noyes' study had
experienced paid employment (Noyes, 1999). To those over 15 years old, however, it was a
topic of substantial concern. It seems likely from anecdotal evidence that currently these young
people are disabled by lack of opportunity and societal attitudes. The publications of Reeve
(1998) and Bauby (1997) are graphic evidence that in the "knowledge society" being
dependent on a ventilator has no bearing on whether the person is able to make a contribution
which can be economically valued. However, for the young people in Noyes’ sample, there is a
long way to go before positive action and imaginative solutions capitalise on their evident
abilities and allow realistic choices. Relevant policy and conceptual issues are discussed by
Riddell (1998) and Bax (1991). The English legal and procedural position regarding
employment is summarised and reviewed by Abberley (1996).               Relevant equipment is
catalogued and introduced in Equipment for Disabled People: Employment and the Workplace
(Disability Information Trust (UK), 1994 a and b), which also provides concise summaries of
English law and regulation governing the provision of such equipment.


Sexuality and sexual expression

For many of the young people in Noyes’ (1999) study, opportunities to meet others and to relate
in private were extremely restricted. This has a particular impact on intimacy and sexual
expression for all affected. Selekman and McIIvain-Simpson (1991) pay specific attention to this
in relation to young people who are in general dependent on medical technology. They
acknowledge the emotional and potentially sexual content of adolescent relationships and refer
clearly to practical strategies which may be required in relation to sexual needs. However, in

                                              20
general, there were few references to the subject in the literature we reviewed. Dalton and
Kirkhart (1985-86) write about the emotional and relationship needs of “ventilator-dependent”
children and refer briefly but considerately to sexual aspects. Anderson's study about the
emotional lives of adolescents with disabilities (Anderson and Clark, 1982) included data about
"courtship and marriage" but is based on young people with spina bifida and cerebral palsy. Most
of the other studies, including those focussing on emotional development make no specific
reference to the subject. Since the topic appeared to be of great concern to the young people in
Noyes’ study, and may raise sensitive issues for caregivers, it would benefit from further
consideration in the literature. Shakespeare et al (1996) analyse the societal dimensions of the
attempted restriction of the sexuality of disabled people. The UK Association to Aid the Sexual
and Personal Relationships of People With a Disability (SPOD) publish a range of leaflets about
sexuality and disability, some of which have a limited use for younger people.


Child abuse, child protection; the criminal justice system

It is beyond the scope of this review to analyse in any depth the now very extensive literature
about child abuse and apply it to the children and young people considered here. What follows
is therefore a general synopsis.


Since the late 1980s (but not before), the literature demonstrates an increasing awareness and
sensitivity to issues concerning child abuse and child protection in relation to children and
young people with disabilities (for example, Kennedy, 1989). The subject is reviewed in a
special issue of the Child Abuse Review (1992) and by Sobsey (1994), Westcott and Cross
(1996) and Westcott (1993,1998).


The definition, causes and incidence of child abuse are complex. The literature analyses widely
varying - and not always mutually compatible - perspectives (for example, Corby, 1993; Browne
and Herbert, 1996; Parton et al, 1997). Factors contributing to this variability include cultural
and historical relativity, varying social and societal awareness, and issues in accurate public
service identification and recording. There are a wide range of dynamics which confound the
empirical investigation of an essentially private activity surrounded by secrecy in which one of
the parties may be powerless, threatened and potentially without verbal communication (Corby
1993). Estimates for the occurrence of abuse range from 5% to 30% of the population. At the
time of writing, a recent authoritative review about the assessment of risk in child protection
may be found in the work of Cleaver et al (1998), commissioned and published by the UK
National Society for the Prevention of Cruelty to Children (NSPCC).




                                                21
In practice, the establishing of fact in relation to child abuse is often difficult, and the estimation
of future risk in specific situations can be uncertain. There are dilemmas in ensuring that
families (and substitute parental carers) are not damaged by unnecessary intrusion and
surveillance whilst ensuring that vulnerable children are adequately protected (Corby, 1993).
There can be conflicting perspectives on prevention and investigation (Woodmansey, 1985;
DoH 1991b), and State action or removal of children into Care is no guarantee of their
subsequent wellbeing. There is now a much greater acknowledgement that all these matters
present specific issues in relation to children whose verbal communication is limited.


Although not all studies agree, Westcott’s research and reviews (1993, 1998, Westcott and
Cross, 1996) are typical of recent work in concluding that disabled children are particularly
vulnerable to abuse. Westcott (1998) quotes the study by Crosse et al (1993) in the USA which
found the overall incidence of abuse to be 1.7 times higher for disabled than for non-disabled
children.   Aldridge and Wood (1998) point out that a number of factors contribute to this
increased risk (multiple caregivers, living away from home, involvement of numerous people in
personal care) including particularly communication difficulties. Although the first Utting Report
(1991) examined the situation of children and young people living away from home, its
consideration of children in hospital was regrettably brief. In addition to physical, emotional or
sexual vulnerability from specific caregivers, the children and young people who are the subject
of the present review are vulnerable to neglect of their emotional, developmental, educational
and attachment needs which may be caused not by the action of an individual but by default.
Living on an intensive care unit, for example, they may be routinely exposed to horrific
incidents and frightening (albeit entirely correct and necessary) adult behaviour inflicted on
critically sick and dying children. Utting’s later report (1996) paid much more attention to these
issues and he was sufficiently concerned to recommend (5.3) that the UK Social Services
Inspectorate (SSI) should carry out an inspection of the social care of children living in hospital.
This recommendation has yet to be implemented.


Communication with the child is an essential part of any child protection procedure. Since the
1989 Children Act (England), a greater awareness has developed about the potential abuse of
disabled children. A greater emphasis has been placed on employing appropriate means of
communication with children whose verbal communication may be limited (Marchant and Page,
1992; Kennedy, 1992, 1993a). Aldridge and Wood (1998) provide a thorough framework in
relation to practical details about child protection interviews and devote a specific section
(pp187-217) to interviews with children “with special needs”. Although this highlights that
communication difficulties represent an increased risk factor for abuse, and refers to the use of



                                                  22
“augmented communication systems”, it does not make specific reference to children
dependent on ventilatory support.


On occasions, the spinal injury which leads to the need for mechanical assistance with
breathing may have been caused by abuse. A child, for example, may have been dropped on
to a hard surface. We found no discussion in the literature as to how explanations about this
extraordinarily sensitive feature of childhood or infancy are then given to the child,
progressively according to his/her age and understanding. The absence of discussion in the
literature does not mean that appropriate conversations are not being held in reality. Anecdotal
evidence and professional experience, however, suggests to the present authors that the
absence of an appropriate attachment figure who would normally take responsibility to respond
to a child’s need for knowledge about themselves can lead to evasion or deception. The gap
would also suggest that there may be deficiencies in the support which caregivers need in
discussing such sensitive matters. There are numerous reasons why the child and young adult
needs to have the information available and the opportunity to make sense of it. These include
their right to information (eg Closs, 1998); their emotional and developmental need relating to
attachment and self-identity (Fahlberg, 1994; Closs, 1998 p 114); the problems stored up for
adult experience if there are unexplained gaps, confusions and deceptions about childhood
history; and the impossibility of providing open and adequate explanations about
accommodation and contact decisions made by adults in the light of their knowledge of the true
facts. The major study by Gibbons et al (1995) about development after physical child abuse
makes little reference to these or related issues.


Such examples of abuse are at one end of a spectrum. At the other extreme are questions
about accommodation of a child where parental care would be competent for a child who is not
"medically fragile", but is regarded as insufficiently organised and reliable for a child who can
only breath with assistance. In between are a range of situations in which there are questions
about the possibility of varying degrees of vulnerability to neglect. For the "severely medically
fragile" child, there is not the leeway for temporary error which exists for some less vulnerable
children. Since there is evidence that predictions of possible neglect are unreliable (producing
both false positives and false negatives: Parton, 1986; Parton et al, 1997; Dent, 1998; Newman
et al, 1998), this poses significant ethical problems.


A single page abstract of research about child abuse and children with disabilities is available
from the UK National Children’s Bureau (1996).




                                                 23
Parents

The literature we reviewed varied in the effectiveness with which it confronted the challenge of
writing about the parents of children who are dependent on ventilators. On the one hand, every
adult (like every child) is unique. Generalised or aggregated statements about emotional and
social experience can appear to categorise and objectify them as if they were different from other
parents. On the other hand, research can helpfully investigate whether caring for a child who can
breath only with assistance can present challenges and give rise to social needs which need to
be identified clearly. From one perspective, some parents indeed feel that this aspect of their
lives, based on a contingent fact about one of their children, can dominate their existence (see for
example, Scharer and Dixon, 1989; Wilson et al 1998). From another perspective, however, for
writers to focus on them solely for this reason will seem a like a denial of their true identity, of the
nature of their parental relationship, and the breadth and characteristics of their human
experience. This is the starting point of Beresford’s study (1994a).


Studies about the children, commonly attempting to write about the totality of the child’s needs,
varied considerably in the degree to which they conveyed that the primary person who would be
attempting to make sense of this totality was the mother or father. A significant number of the
studies reviewed here are about the process of arranging for the child to live at home (“to receive
homecare” as the clinical literature sometimes describes it). Whilst many of these take account
of the social factors, - “non-medical criteria were the biggest barriers to discharge” (Goldberg et
al, 1984) - very few conveyed a sense of the parents’ experiences and needs throughout the
whole process. This will often begin with extended hospitalisation in which opportunities to
interact with and care for their child, to participate actively in a developing relationship were
severely and hurtfully curtailed. Although this is a feature in the general literature about children in
hospital (Brown and Ritchie, 1990; Callery and Smith 1991; Darbyshire, 1996), it was not evident
in the literature specific to the children dependent on ventilators. It emerged as a consistent
feature in the empirical research carried out by Noyes (1999), and is linked to a range of issues
about accommodation in hospital and about attitudes, awareness and staff development.


The common themes identified by Baldwin and Carlisle (1994) in their review of the social needs
of disabled children and their families occur repeatedly in the accounts which are specific to
children with complex medical needs, or to technology-dependent children (Shipley, 1997; Kirk,
1998). The account given by Noyes et al (1999) of the restricted circumstances of families, which
include a child dependent on a ventilator, replicate the findings of more general studies about
other families which include a child with a disability. Severe financial pressures are documented
as arising from a whole range of sources (Baldwin and Carlisle, 1994, pp 22, 43; Beresford et al,


                                                  24
1996 p 39-48): the inability of at least one parent to take paid employment; the costs of special
travel arrangements; the need to purchase specialised varieties of a whole range of items of
which others purchase a standard version; for some, clothing and laundry costs; individual
circumstances which necessitate a host of different special arrangements.         In this context,
parents in Noyes’ study (1999), as in the review by Glendinning and Kirk (1998), expressed angry
frustration at the substantial State expenditure on unsuitable equipment for their child (often in
bulk purchase) whilst they were left to pay privately for equipment which would be more suitable.
Wegener and Aday (1989) found that for children using assisted ventilation living at home, family
finances were one of three predictors of family adaptation and family stress.


These financial pressures affect families whilst their child is in hospital. The only option for
parents of five children in Noyes' study (1999) was to rent accommodation near the hospital in
addition to their family home. The literature about children who are dependent on a ventilator,
however, tends to concentrate on the issue only at discharge, creating the impression of a very
“service-led” concern about any psychosocial pressures.


Some of the American commentaries seemed to attach little significance to pressures on family
finance (Lynch, 1990; Richardson et al, 1992; Copeland and Clements, 1993). Parents who took
part in Diehl’s focus groups (Diehl et al, 1991), however, identified finance as one of the
significant categories of need. The editorial by Orlowski (1993) which gives a concise overview of
the whole subject takes for granted that readers will appreciate the financial pressures created by
the care of a ventilated child at home.


Unsuitable housing arrangements were amongst the most debilitating and widespread pressures
reported in Noyes’ study (1999) and this is in keeping with the more general UK reviews of
literature (Kirk and Glendinning, 1998 and Baldwin and Carlisle, 1994). Once again the American
literature varies in its identification of housing as an issue.


Leonard et al (1993) document and analyse the emotional impact on parents. Having
acknowledged the improved health outcomes associated with home care, along with
“assumptions of normality” and the lower health service costs, they pose the question whether
within present systems these “improvements” have in fact been achieved at the cost of parents.
The parents in Noyes’ (1999) study identified a range of emotionally exhausting issues similar
to those reported in the literature. Some of the recurring themes in the literature about the
emotional pressures experienced by parents are: sleeplessness; the strain of 24 hour-
vigilance; the experience of the health care system as a challenge not a support; the loss of
privacy when nursing staff are providing care for a family member at home and associated


                                                    25
problems of reliability of staff, theft and intrusion and constant domestic disruption. Leonard et
al (1993) reported significant levels of psychological distress symptoms and home health care
assistance was judged by parents to be more significant in alleviating distress than general
home care assistance. Ray and Ritchie (1993) found that stress increased with the length of
time for which the child had been cared for at home. Parents in a number of studies referred to
the enormous difficulty in arranging holidays and the debilitating and frustrating effect which
this created over time. Findings in Noyes’ (1999) study suggest that being able to take a break
was absolutely essential for parents and provision for respite care needed to be included in the
child’s care package.


In most of the studies about children who need to use medical technology, parents had worries
and struggles about the suitability of equipment. Shipley’s review (1997) report the findings of
Fleming et al (1994) that many of the impacts were broadly similar regardless of the technology
on which the child is dependent. Baldwin and Carlisle (1994, p22, 27-33) review the literature
about the stress experienced by the parents of disabled children in general, and Beresford et al
(1996, p 70-80), with the same wide brief, include examples of good practice alongside their
discussion of the literature.   Many studies refer to “parents” in general, but there is an
increasing recognition that mothers are in fact the primary population. Copeland and Clements
(1993) specifically compare the perceptions and coping strategies of fathers and mothers;
Beresford et al (1996) review the literature from this point of view and discuss the issues which
arise.


There are likely to be a range of situations in which children or young people are unable to
return home but should not stay in hospital when they are medically stable. The preferred
option for the young person is likely to be family-based rather than institutional care and in
these circumstances the support of alternative caregivers as well as natural parents is likely to
present a challenge to service providers. In some circumstances, medical foster care may be
the preferred option.    The description by Yost et al (1988) indicates situations in which
extended but ultimately unsuccessful efforts were made to continue involvement by parents.




Parents as "carers"

The literature examines both conceptual and practical issues in relation to the specialised health
care procedures carried out by parents when their child’s breathing is dependent on a ventilator.




                                                26
Kirk and Glendinning (1998) consider that there are unexamined ambiguities involved in
describing parents as "informal carers" in the language of health and social care (this echoes
Beresford’s empirical findings (1994 a,b) that mothers and fathers described themselves as
“parents”, not as “carers”). It is true that the performance of procedures, roles and functions
allocated in a health and social care context to "informal carers" may involve a significant
extension of the "parenting" role. Nevertheless, the use of the term in the same context as other
family carers (of adults) whose responsibilities are also significantly extended and who now
acquire legal status in health and social care contexts is not straightforward. They identify a
number of issues, including the question addressed to service commissioners about their
response to parents who wish to have their child live at home but not to carry out technical clinical
procedures. Like Evans (1994) and Coyne (1995) they point out that further research is needed
to explore parents' experiences, perceptions, dilemmas and choices in taking on such additional
roles. They echo Rennick (1995), in analysing the way in which developments such as those
discussed in Noyes’ (1999) study require a changed conceptualisation of the nursing role in
relation to the family.



Education and support of parents in relation to technical procedures.


Most of the literature considering the home care of children who use assisted ventilation refers to
the technical education of parents as part of the process of discharge from hospital (for example,
American Thoracic Society, 1990; Lynch, 1990; Canlas-Yamsuan, 1993; Gilmartin, 1994;
Kacmarek, 1994; Hartmann et al, 1994; American Association for Respiratory Care (AARC), 1995
a,b; Panitch et al, 1996; Shipley, 1997; Jardine and Wallis, 1998; NHS, 1999). The time scale for
this process varies widely depending on the condition of the child - from 4 days in one case
quoted by Jardine and Wallis (1998) to 204 days in another. The areas identified are usually:
operation of technology including response to alarms or malfunction; when required, the
principles of tracheostomy care; and resuscitation.      Lynch (1990) and Panitch et al (1996)
recognise specifically the difficulties associated with feeding and swallowing and identify the need
for a feeding therapist to be involved. In summary form, Lynch (1990) provides more detail about
the technicalities of monitoring and machine function which were considered essential. Like
Jardine and Wallis (1998) and Aday and Wegener (1988), the UK report from the North West
region of the NHS Executive highlights the need for continual re-evaluation when the child is living
at home because of the changing domestic circumstances. Most authors state that the education
should be competency-based, and should be based on written goals and evaluation criteria.
Jardine and Wallis (1988) also recommend that there should be a written statement of
accountability. Hartmann et al (1994) describe the evaluation of a training programme, which
most parents rated as “good” or “very good”.

                                                 27
These recommendations are presented as essential practice. It is not clear, however, that they
represent routine practice, and audit and research is needed in this respect. The reports of
some parents in Noyes’ study (1999) replicate the findings of Andrews and Neilson (1988) and
those of Fleming et al (1994). Speaking to parents of children who used medical technology,
they found that parents needed more information and support about the care of the equipment
and their children. The literature seldom refers to the educational partnership in building on and
utilising either the children’s or the parent’s expertise. Although several studies noted that the
turnover of key staff and the conditions in hospital mean that they may in practice be the “lay
experts” about the care involved.


Culture and ethnicity

A proportion of the children and young people dependent on ventilators will be from minority
ethnic groups. In Noyes’ sample of 18 young people, 6 different cultural and ethnic identities
were represented. One American study refers briefly to work to ensure that services were
ethnically sensitive (Goldberg et al, 1984), but the subject is dealt with in the UK literature only in
relation to the more generic subject of ”disability” (for example Ward, 1991; Abbas et al, 1993;
Jensen et al, 1998) or health (for example Benzeval et al, 1995; Smaje, 1995). There are relevant
issues to be considered at every stage of policy and practice. Positive action is required to
provide an appropriate living and developmental environment for the child and young person in
hospital, especially if their stay is extended (Qureshi, 1994; Andrews and Boy, 1995). There are
central issues about working collaboratively with varied family structures and expectations when
the young person is at home. Policy development is needed at national and local level to ensure
positive service to people who have experienced and adjusted to racist attitudes and actions in
their contact with services (Benzeval, 1995; Smaje, 1995, e.g. p 123). Qureshi presents both
thoughtful analyses and practical implication for health care professionals. The nursing literature
as much as that of social work emphasises the need to work in an empowering fashion so as to
capitalise on the family’s own strengths, which will vary not just individually but also according to
culture and community (Dobson, 1991; Ahman and Bond, 1992; Rennick, 1995; Casey, 1995;
Coyne, 1995; Darbyshire and Morrison, 1995; Glendinning and Kirk, 1998). The cultural and
spiritual significance of trauma, disability and physical damage varies between religious cultures,
and may have different signification for boys and girls.


Psychosocial support

The experiences, problems and needs described in this literature span medical, physical,
emotional, practical, relationship, social and financial areas. Accounts constantly highlight how

                                                  28
the young person, the parents, and their siblings require service-providers to be aware of others'
roles and sensitive to human need in areas other than their own specialism. Staff are required to
be particularly alert (whether dealing with the child or parent) to the person-in-the-situation. If
services are arranged well, it is likely that nursing and other clinical support will be provided in the
home by staff with a continuing responsibility for the young person or their parents. Quinney et al
(1997) found that these were precisely the conditions in which nursing staff tended to develop a
more sophisticated awareness of holistic (as distinct from task-centred) care. This alertness to a
"holistic model" in which physical, emotional, social, practical and family needs are taken
seriously requires that priority be given to trust and relationships, a field in which the literature of
psychosocial support is relevant. This literature examines the provision of social support by
professionals: it includes both empirical studies of improved outcome because attention was paid
to social support and analyses of the factors involved. It notes that alongside the efficient
performance of instrumental tasks, attention has to be paid to trust, communication, the
emotional functions of relationships, including the allaying of anxiety, the acceptance of anger,
the ability to assist with problems of self-criticism and depression (for example, Hugman et al,
1997, p 65).


In the present context, some of the literature and practice in this tradition has been criticised for
"pathologising" parents and children (Baldwin and Carlisle, 1994). Language based on "needs"
can emphasise supplicancy in contrast to language based on "rights" which "places the one who
claims it on the same level as the one who grants it" (Alexis de Tocqueville, quoted in
Hammarberg, 1999). Language based on the assessment of need can do violence to identity and
experience by creating a discourse about an individual which refers only to deficit, problems or
future development. It can emphasise passivity and thus objectify a person. The parents and
some of the young people in Noyes’ (1999) study said that they were frequently not respected by
professionals as equal partners in the relationship. It is important, therefore that psychosocial
models are developed which accurately reflect the rights, needs, processes and outcomes
without using language or encouraging analysis which diminishes or misrepresents the parents or
children concerned.


As illustrated in the previous section in relation to culture and ethnicity, effective psychosocial
interventions must respond to the individual in their specific social and cultural identity. The
absence of demographic data about the subjects is, however, a limiting feature of almost all the
studies we reviewed. One American study (Goldberg et al, 1984) refers specifically to the need
to re-orient the home care programme to the ethnic background of the family, and Wheeler and
Lewis (1993) examine the differential factors in urban and rural settings in America. In their
study of parental distress, Leonard et al (1993) provide extensive details about family


                                                  29
characteristics. A majority of the accounts do provide relevant information about children's
ages. In general, however, studies make no mention of ethnicity, and pay little attention to
gender. Baldwin and Carlisle (1994) refer to an awareness of ethnicity and culture only as
“new developments”, not as a general feature of the literature they review.


As part of their review of (broadly) evidence–based research about services for families with a
disabled child, Beresford, et al summarise Dunst’s conclusions about effective practice in terms of
four characteristics based on relationships and starting from the families’ own concerns
(Beresford et al, 1996, p 75; Dunst et al, 1994, 1998). Patterson and Geber (1991) present a
conceptual framework based on systems theory and “the development of competence”. In
principle this emphasises both psychological and external factors (for both parents and children)
and presents a positive, non-pathologising view. The net result of their work, however, is quite
distanced from the day-to-day realities of the problems caused by poorly resourced and ill-co-
ordinated services. The next section of this review considers the literature about the provision and
co-ordination of services.




                                                30
SECTION 6



SERVICES: IN HOSPITAL, AT DISCHARGE, AND AT HOME

Principles

Differing perspectives about children’s rights and the social construction of disability can result in
differing accounts of the services needed by children who are dependent on assisted ventilation
and their families (Alderson, 1993; Shakespeare and Watson, 1998; Morris, 1998a, 1998b,
1998c, 1998d).


Those who argue passionately for the right of disabled people themselves to determine their own
needs and the services they require, and who combine this with a liberationist commitment to
children's rights, argue that it commonly occurs that services "for" a child or young person with a
disability are in fact determined by other people, particularly professionals in health, education, or
social services and by parents. Conceptualising problems as the "heavy burden of care", for
example, can lead to a discourse in which the young person is treated as an "object" of concern
or care, and not as a subject or citizen. They argue that this is a source of oppression,
disempowerment and discrimination, and that the systems involved need to be replaced by
properly resourced arrangements in which the child's voice is central (achieving this sometimes
by the utilisation of advocates or other assistants). In this context, it is striking that Baldwin and
Carlisle point out (1994, page 20) in their review of nearly 350 books, articles and reports about
social support for disabled children and their families that very little of this literature was based on
direct communication with the child. Noyes’ (1999) study helps to remedy that gap in relation to
one group of children and young people, although we recognise that this too was carried out and
is presented here by non-disabled adults.


However, most of the authors appear to consider that it is inappropriate in principle and unrealistic
in practice to consider the child's needs in isolation from those of their family. Even when
adopting a strong campaigning stance, authors generally develop a more pragmatic approach to
the dynamics and demands which inevitably affect the whole family in which one member has
complex medical needs or an impairment which results in disability. The literature review
commissioned by the Social Services Inspectorate at the Scottish Office (Baldwin and Carlisle,
1994) examines “social support for disabled children and their families”, and is concerned (p 21)
about the "heavy burden of care" which falls particularly on women. The report by Beresford et al
(1996) is concerned with “families with a disabled child”. Social workers arranging “respite care”


                                                  31
may be aware of major deficiencies in their implementation of children’s choices, and yet feel that
they have to choose in an unsatisfactory world the lesser of two unsatisfactory arrangements, the
alternative being that the total breakdown of the family care for a child.


The section of the review by Baldwin and Carlisle (1994) which looks at the organisation of
services does not specifically refer to children or young people who use assisted ventilation.
There are some key issues (for example, about the effects of living for long periods in an
institution, the organisation of education services, and about employment) which are core
concerns in Noyes’ (1999) study but do not figure sufficiently prominently. Most of the literature
survey, however, can be seen to be relevant, subject to further exploration as to how the issues
impact specifically on children who because of congenital conditions or through events during
their lives are unable to breathe without assistance. In general, this review clearly agrees with
other studies both before and afterwards (for example, Glendinning, 1983; Department of
Health/Social Services Inspectorate, 1994; Beresford, 1993b, 1994a, 1994b, 1995a, 1995b,
1996b; Beresford et al, 1996; Bradley and Aldgate, 1996) in identifying key messages, including:
concern about the way in which parents, young person and medical professionals negotiate an
understanding of what has happened; the diagnosis, and the prognosis; the extent of the
physically exhausting and mentally demoralising tasks which are a constant responsibility of the
carer; the destructive impact on the social lives of the parents and other family members; the
financial consequences, as the disability of a child both creates additional expenditure whilst
reducing the income available to pay for it; the constant unremitting struggle which parents and
young people experience in attempting to obtain adequate and adequately organised public
services related to the disability; and the need for an understanding which adequately takes
account of internal, external social (material/interpersonal), and external societal factors.


Evidence-based social service practice is promoted in the report by Beresford et al (1996). In
addition to presenting the results of “critical evaluations” of research reports about services for
families which contain a disabled child, it contains examples of good practice. The headings used
in the review are: information, material resources, breaks from care, domestic help, skills and
strategies, social support, co-ordinating services and black perspectives.


“Participation” and “empowerment” of patients and carers are now written about as significant
components in the theorising of health practice and in health policy (Brearley, 1990; Callery and
Smith, 1991; Ashworth et al, 1992; Dearmun, 1992; Jewell, 1994; Casey, 1995; Coates and
Boore, 1995; Coyne, 1995 and 1996). They are key variables in relation to service arrangements
for children and young people who use assisted ventilation (Nissim and Sten, 1991). These
individuals can easily become characterised in the literature and practice in terms of


                                                  32
“dependence”, becoming “objects” of treatment rather than being seen as subjects. Kirk and
Glendinning (1998) analyse the concept of participation, factors which have led to its prominence,
and ambiguities in its use. Like them, Patterson et al (1994) focus on the nature of the
parent/professional relationship as a major factor in the experience of caring for a disabled child
at home. Since “partnership”, “empowerment” and “participation” are also used extensively in
social work discussion, there is now also a substantial literature in social work and social policy
which reviews the variable and sometimes deceptive use of these words.


The health services and other public services are frequently experienced by those who work
within them as beyond individual influence. Young people dependent on assisted ventilation may
have only a very small voice physically. The literature we reviewed would be usefully augmented
by descriptions of initiatives which attempt to give explicit priority to their wishes.


Service provision and co-ordination

This section reviews literature about service delivery, organisation and co-ordination. The
literature about parents’ views presents repeatedly the view familiar to most people working
with children who have complex needs, namely that the services provided “are experienced as
much as challenges and obstacles as supports” (Ray and Ritchie, 1993).                    Parents have
constantly to assert their children’s rights, to fight for services, to appeal decisions, “something
which is time consuming and stressful for parents who may already be overburdened and
exhausted” (Kirk, 1998, reviewing Diehl et al, 1991; McKeever, 1994; Petr et al, 1995). From a
national perspective, the report from the UK National Co-ordinating Group on Paediatric
Intensive Care to the Chief Executive of the NHS describes the provisions of paediatric
intensive care as “currently unplanned” (DOH, 1997a, page 1).


The most specific literature is found in the health field – we found little about social care,
housing, employment or education which addressed the issues distinctive to the child
dependent on ventilation (or their family). The majority of the studies are by clinicians (to which
particular reference is made in the next paragraph). Giving authoritative guidance are reports
from professional associations (AARC (USA), 1995 a,b; British Paediatric Association, 1993;
Jardine and Wallis, 1998) and in the last two years, UK health service documents about
paediatric intensive care, including Paediatric Intensive Care: A Framework for the Future (DoH
1997a) and regional specifications such as that from the North West region (NHS, 1999).
These have to be appraised in the context of relevant English law and guidance which governs
conduct and standards in the NHS (Quality Protects (DoH, 1998b,c); Partnership in Action




                                                   33
(DoH, 1998e); The Patients’ Charter (DoH, 1992, 1996a); Children’s Service Planning
Guidance (DoH, 1996b).


Clinicians (nurses, therapists and doctors), as the relevant service providers express concern
about resource management, about the use of specialist intensive care facilities and about the
welfare of a medically stable child living unnecessarily in an institution (James, 1996, Fraser et
al, 1997, Jardine and Wallis, 1998). In considering the child who is living in hospital, the clinical
literature often adopts an holistic “biopsycho-social” perspective, (for example, Gilgoff and
Helgren, 1992) but it is in this phase of treatment that the medical service literature can seem
least family-oriented. There are then studies which consider the process of stabilising the
ventilation and preparation for discharge (for example: Aday et al, 1988; Richardson et al,
1992; De Witt et al, 1993; Hill, 1993; Spence, 1995) and a range which consider care planning
and management when the child is living at home (For example: Aday et al, 1988,1989; Yost et
al, 1988; Hazlett, 1989; Fields et al, 1991a,b; Davies, 1996; Shipley, 1997). Dalton and Kirkhart
(1985-6), like Noyes (1990) provide an accessible overview of issues faced at different ages
and different stages, with helpful observations about the psychosocial support implications at
each stage.


In relation to the transition from living in hospital to living at home, the recommendations in the
works by the American Thoracic Society (1990), Smith et al (1991), Smith (1991b), De Witt et
al (1993), Hill (1993), Teauge et al (1993), Gilmartin (1994), Kacmarek (1994), Kinnear (1994)
Pilmer (1994), Bakewell-Sachs and Porth (1995), AARC (1995 a,b), Davies (1996), Spence
(19950, Nelson et al (1996), and Samuels (1996) show common themes in identifying: the
team which is required in order to achieve transition; the equipment which must be supplied;
preparation of families; nursing services; physician services (primary care and specialist care);
frequency of assessment by respiratory care experts; developmental therapy services;
nutritional consultation; social work services; and case management. They vary in the
frequency with which they include: housing services; educational services; separate medical
case management; and ancillary care services.


Despite the range of guidance on discharge management in the literature, the young people in
Noyes’ (1999) study encountered a multitude of obstacles and barriers that prevented them
from being discharged home. These included: obstruction by professionals; funding;
incompetent management; difficulty in recruiting carers; social and housing problems; and a
lack of auditing and monitoring of outcomes. These issues are remarkably similar to the
findings reported by DeWitt et al (1993) and Capen and Dedlow (1998).



                                                 34
In the UK, as the following review highlights, there has been considerable policy development
by commissioners and providers of health services. Official attention about the provision of
paediatric intensive care beds and services for “ventilator-dependent” children has been
gathering momentum in the UK since 1991 (James 1996, Ashworth, 1996). For example,
reports by the British Paediatric Association (1993), the NHS Executive (DoH, 1997a, 1997b)
and regional Executives of the NHS (NHS, 1999) set out a policy and managerial provision.
These documents outline mission statements, objectives and goals. They set out a coherent
perspective on children from first admission in severe emergency through to stable living in a
domestic environment, preferably the child's family home. This is put in the context of the
existing situation in which children are sometimes cared for in a variety of unsuitable hospital
environments (such as adult intensive care facilities) and suffer a variety of ill thought-out
transitions which are hindered by bureaucratic and sometimes self-defeating organisational
provisions. The intention of the reports is to enforce for these children the rights which are set
out in general terms in NHS legislation and its associated guidance. These more generic
documents include The New NHS            (DoH, 1997c), Quality Protects, Children’s Services
Planning Guidance (DoH, 1998 b,c), The Patient's Charter: Services for Children and Young
People (DoH 1996 a). The reports all emphasise the need to work in partnership with the
parents and the young person. They vary in the degree to which they recognise the force of the
provisions in the Children Act that there should be explicit planning and review of children away
from home and that the child's view must be carefully and effectively represented in this
process, if necessary making use of an advocate.


At the time of writing, references to A Framework for the Future (DOH, 1997a) and the
Regional Specification For Children On Long Term Ventilation, (NHS, 1999) are to
recommendations and to future specifications. What matters is clearly the implementation and
enforcement of the provisions.


The reports specify the child-centred environment in which children should always be cared for
(including provision suited to the needs of adolescents). They specify the facilities essential for
parents (including, for example, private sitting room and telephone). There are provisions about
the level and training of staff. Both reports specify in general terms the level and range of
equipment which needs to be available. For children at home, this needs to be portable and
“low-tech” - the aim is not to transfer the Intensive Care Unit to the home.




                                                35
As part of the recommendations to commissioners and providers of services, the regional
specification states that it is unacceptable to purchase services which do not meet the
standards specified. In line with Partnership in Action (DoH, 1998d), which proposes new ways
of ensuring joint working between Health and Social Services, it is recommended that services
should be jointly commissioned and that there should be a single lead commissioner.


In setting out the level and nature of care required between first emergency and independent
living, the regional specification in the North West (NHS, 1999) details the establishment and
functioning of long-term ventilation units separate from intensive care units and tailored for the
living needs of young people. It considers the problems and provisions necessary when the
child's home is some distance from the lead centre of which this forms a part.              Their
organisation and structure takes account of the role envisaged in providing (24 hour) support of
community services which may have varying degrees of expertise in the specialism. The long-
term ventilation unit would both provide continuity and be a source of respite care.


The UK national framework (DoH, 1997a) sets out the need for local and regional audit. In the
first place this would establish baselines, levels of need, and planning information;
subsequently it would also be part of continuing quality control procedures.


The UK North West regional specification (NHS, 1999), like the Paediatric Long-Term
Ventilation Group (Jardine and Wallis, 1998), emphasises the importance of involving the
community services from the child's locality as soon as the need for long-term ventilation
becomes evident. Even though the lead centre may be distant from the child's home, and
hospital discharge may be some months away, the facilities, staffing, and circumstances
surrounding the community services must influence decision-making and planning from the
outset. Like the work of the UK Paediatric Long-Term Ventilation Group, both the national and
regional reports emphasise that the young person and parents are partners in care and must
be considered as part of the core planning team. The need for regular re-assessment because
of changing domestic circumstances is highlighted. The national and regional reports both
specify the need for individually designed programmes and the need for consistent care
manager to whom parents and young person relate (the regional specification suggests a joint
social services/health arrangement).


There are a range of important factors which the reports stipulate must be specified for each
individual. These include: risk management; emergency procedures, including arrangements
for the mutual roles of specialist and community services; housing requirements; the need for
housing review and the central work of the occupational therapist in this; the variability of


                                               36
choices in relation to caring and paid care which will be made by parents; the implications for
different levels of external support; a clear statement that parents will not be automatically
expected to provide "clinical" care; mobility and transport arrangements; transition to adult
services. The regional report emphasises the need to co-ordinate the timing and other
arrangements about meetings so as to cause the minimum of disruption to the young person; it
states that when transitions occur, it is not acceptable for hospitals, social workers, schools and
other significant people to change all at once.


If planning is directed towards long-term ventilation, then from an early stage, the joint effort
will be directed to the use of portable low-tech systems rather than those which will be the most
efficient in a modern intensive care unit. A key dimension will be the involvement and training
of people who are not clinicians. Depending on the likely ability of the young person to breathe
during an emergency without ventilatory assistance, there will be substantial issues of risk
management (“taking risks” being potentially a positive step in some situations and a negative
one in others). Written profiles of competency-based training and accountability are
recommended, alongside involving the child and direct carers in positive progressive attitudes
to “normal life”.


At the time of writing, “The New NHS: Modern and Dependable ” (DoH, 1997c) is being
enacted by the UK parliament. This envisages a move towards a Health Service led by primary
care (community based commissioning and purchasing groups). This is intended to put the
individual patient at the centre of the Health Service effort and in relation to the young people
considered here is potentially the perspective from which their health needs should be
considered. However, concern has been expressed that the primary care services have yet to
demonstrate expertise in managing the needs of this small group of patients for whom services
in comparative terms are exceedingly costly.


Our search of the database of "grey" literature (SIGLE) produced no additional relevant results.
The policy issues surrounding the organisation and financing of services for these young people
were not raised in the general literature about health/social services/education/housing
collaboration. However, having found this, we did not have the resources in this particular review
to enquire further systematically and, for example to write to relevant departments, regional
Health Authorities, working groups or NHS Trusts to enquire if they had documents (published or
unpublished) which were more specific to these children and young people and which they would
make available to us.
Government guidance in the UK which has some specific relevance to the issues which arose
about medical services in Noyes’ research are the guidance about the welfare of children and


                                                  37
young people in hospital and the children’s services planning guidance (DoH, 1991a and
1996b).

Social Services


There is a growing and forthright social services literature which examines the needs of
families with a disabled or medically fragile child, and a small literature about technology-
dependent children. The attention paid to the specific social services planning for children
dependent on ventilators seems to be negligible or non-existent. Indeed the only detailed
literature on the practicalities of social care for children with complex medical needs in general
appears to be extremely small. From one point of view this is understandable - it is the social
aspects of disability which are the concern of the social services, not the characteristics of
specific physiological conditions. However, since this group of young people and their carers
need focussed and expert support because of the vulnerability of everyone concerned, it
seems unlikely that progress will be made in enabling them to lead “ordinary lives” without
more specific attention being paid to the organisation, training and backup of services which
are dealing with them.     There is a need for social services attention to be directed in a
focussed and informed way at the needs of the children, their parents, and other carers at each
stage. This should include: when the child is in hospital; planning and review about the home
living circumstances; at discharge; when child is living at home, including the implications for
respite care; and at the pattern of life for some children who may live in a sequence of boarding
schools and other residential institutions through their childhood.


In the limited space available, it is possible here to highlight only a few relevant dimensions of
the literature about UK social service responsibilities to disabled children in general. At a very
practical level, and indicating the increased attention to subjects close to the present concern,
Barnardos has published guidance about care of children with complex medical needs (Rhodes
et al, 1998). The National Children’s Bureau’s series of Highlights provide one-page summaries
of the research about many relevant areas. The Social Services Inspectorate (Department of
Health/Social Services Inspectorate, 1994) reported on services for disabled children in the
context of the Children Act (England). This for the first time defined children with disabilities as
children in need, which within this Act therefore places responsibilities on public Authorities to
provide and to cooperate in providing appropriate services. The study and dissemination of
good practice about respite care is the subject of works by Robinson (1986-1998, some in
association with Stalker and others). Work about the application of the child’s right to be heard
is presented in relation to health and education as well as to social services by Alderson (1993,
1995, and with Goodey, 1996). Reference has been made earlier to the work of Glendinning
(1986, 1992) and others specifically about social work services, and also to the work of Morris

                                                38
(1998c) concerning the extent to which disabled children live away from their families in a
sequence of unsupervised placements without social work support (see also Russell, 1995).
Particular attention is paid to issues relating to foster care by Mountney, (1991), Argent and
Kerrane (1997), and Phillips (1998). Beresford’s work on housing            (1995a, Oldman and
Beresford, 1998a,b) indicates the degree to which social workers seemed unaware of the
problems caused by unsuitable housing. Baldwin and Carlisle (1994, p 41-55) summarise key
dimensions to the social needs of families with a disabled child as they are manifest in the
research, a subject to which an “effectiveness” analysis is presented by Alderson et al (1996, p
26-95). There is now a growing awareness of the impact of double oppression in relation to
social services for children who are black and disabled (for example, Ward, 1991, Abbas et al,
1993, National Childrens Bureau Highlight, no 122).


Education


The most comprehensive children’s service is also that in which managers, professional
workers, administrators and support staff tend to have least knowledge about children
dependent on technology. Parette (with Hourcade et al, 1993; with Bartlett et al, 1994) describe
how health professionals can have a key role in linking and assisting different multidisciplinary
teams so that a child’s educational needs can be adequately met. In Noyes’ study (1999) the
children valued education, but its effectiveness for them varied widely. There appeared to be
considerable differences between hospitals, and there was substantial variation between
different schools and colleges in their attitudes and ability to meet the needs of the young
people. Seven of the 18 young people attended mainstream schools, a proportion comparable
to the 53% reported by Jardine et al (1999). Not all the young people would describe
themselves as “disabled”. The term “inclusive education” which is currently used to signify the
developing ability of a school to enhance its total competence for all pupils by being able to
respond “to all pupils […who wish to attend…] as individuals” (Sebba and Sachdev, 1997)
seems particularly appropriate to their situation.


Noyes’ report (1999) summarises twelve issues which from the young people’s point of view
needed the attention of agencies in relation to education. The areas which occur both in this
and in the UK Government circular on “the education of sick children” (Department for
Education and Employment, 1994b) can be summarised as: the quality of teaching provision;
the quality of the environment in which education takes place; communication issues for the
ventilator-dependent child; staff training; liaison and continuity between education provided in
different settings (for example, in hospital, at home and in several schools).



                                                39
The practical issues which arose for the children and young people in Noyes’ (1999) study
included: the intrusion and surveillance involved in the presence of carers; the converse worry
(expressed by parents rather than children) about safety (for example that a child who needs
assisted ventilation when asleep might be allowed to "doze off" with no one noticing); the
adequacy of communication devices; and staff skills. Although works about “inclusive
education” (the reviews by Sebba and Sachdev, 1997, for example and Shaw, 1998) refer to
children’s views about constant surveillance by individual support staff, they seldom confront
the issues for educational staff, used to dealing with children in large groups, about explicitly
being aware of “condoning” the illicit, (sometimes sexually-directed) interaction which is a
characteristic and significant part of children’s friendship behaviour (Dorn and South, 1989).


The report by Noyes (1999) highlights good practice as identified by the young people and
practical guidance about some of the issues as presented by the Department for Education
and Employment (DfEE) Good Practice Guide (DfEE, 1996b). This accompanies a DfEE
circular (DfEE, 1996a) which sets out the current English legal framework. This attempt to
safeguard the well-being of children and to protect both staff and children is a step towards
ensuring that schools are fit places for the “medically fragile” child, but the debate about
segregation, integrated and inclusive schooling is a subject of continuing debate. Within each
group who hold expert opinion - children and young people, parents, authoritative writers and
researchers, disability action groups – there are diverse views on the subject.


References to relevant legislation and guidance are given in Section 7 of our report. The
current English legislative framework has been criticised (for example by Shaw, 1998) as well
intentioned, but ultimately based on a concept of “special needs” which “contains at its heart
concepts …based on normality and abnormality”. Whereas, the philosophy of inclusive
education places emphasis on the processes by which a school improves its totality by
responding effectively to diversity and to rights.


The review arises out of the needs of a particular research project, and it was not possible
within the available resources to do justice to the range of literature which is relevant to the
very broad subject of education for the children and young people who took part in Noyes’
(1999) study. Relevant overviews of many generic issues, together with significant references
are given by, the UK organisation, The National Association for the Education of Sick Children
(1996), Sebba and Sachdev (1997), Department for Education and Employment (Research
Report no 60, 1998) and the National Children’s Bureau Highlight no 123 (this dates from 1993,
but the substantive content of the legislation is unchanged by the 1996 Act which supercedes
it).


                                                 40
Service co-ordination


At every level, the quality of collaboration between the health, social, housing, finance support,
and education services is a crucial determinant of the day to day quality of life for these
children and their families (Noyes, 1999). Failures can have severe and traumatic effects (see
for example Haines et al, 1996). The failures can occur between different aspects of the same
service (hospital and community services, for example), practitioners in different services, at
the level of supervision and case management, at the level of unit management or other middle
management, at local policy level, in national policy and in political strategy.


Reference was made earlier in this section to the UK Government's initiatives to improve co-
ordination between services (DoH, 1998e, in the context of the other reports 1996b, 1997c,
1998b, 1998d). An overview of the issues involved and of the complex structure of health/social
services provision at the time of writing is given by Leathard (1998). As she points out, the
injunction to collaborate and provide seamless care is "deceptively simple".


Planning for the whole process needs to start from the period following the initial breathing
emergency, when the child will often be in the intensive care unit. From this point on, there is a
need to involve all those who will play their part at some stage. In the UK, these include the
parent, the young person, possibly a clinical nurse specialist / discharge co-ordinator, the staff
of a transitional care unit or long-term ventilation unit, possibly the staff from a district general
hospital, community paediatricians, primary care staff, and a range of staff from the Social
Services department. Funding decisions may involve the National Health Service regionally as
well as more than one area Health Authority; the Education Authority; the Social Services
department; the Housing Authority; and possibly charitable foundations. Lawyers and insurers
may be involved in relation to compensation or claims arising from accidents. The disciplines
represented include staff at senior levels in their professions with potentially overlapping
interests (the lead consultant for admission and planning of a transitional care unit or long-term
ventilation unit, the lead consultant for the intensive care unit, and the child's paediatrician, for
example). Staff are from disciplines with widely differing professional structures and levels of
responsibility in hospital, community, school and social care settings. Practitioners in nursing,
occupational therapy, speech therapy, teaching, play therapy, and social work represent only a
selection of the specialisms involved (NHS, 1999). As the North West regional specification
(NHS, 1999) emphasises, the general practitioner (family doctor) plays a key role as the person
who is most likely to have a continuing view of the family's total health needs.



                                                 41
Recommendations in the clinical literature emphasise the need for individual case
management, with a case manager who is personally known and trusted by parent and child,
who works closely in partnership and in an empowering way, under the direction of the young
person or parent. This person has authority to make budgetary arrangements and is of a level
of seniority to co-ordinate the multidisciplinary team (Jardine and Wallis, 1998). Deming and
Wolf (1997) specifically contrast situations with and without case management, finding great
superiority in the former. This is American experience and will in part relate to the specific
features of a health care system based on private insurance. There is food for thought for UK
practice, however, in their insistence that a case manager should be independent of both
funder and provider agencies. In the limited studies we found which looked specifically at these
children, the case manager was either in fact a nurse, or research seemed to indicate that
parents were more satisfied with the situations in which the case manager was a health-trained
professional. In the USA, a different professional role, ‘the respiratory therapist’ has evolved to
manage the care of people with respiratory failure, whereas, in the UK, this function is
performed entirely by a nurse.        Beresford et al (1996) contrast the effectiveness of
“collaborative team working" approaches with “care management” systems. They note that
“key worker" systems resulted in improved confidence in parent-professional relationships but
that the families did not experience fewer problems. Not all the young people in Noyes’ (1999)
study had access to a case manager and for some families this role was undertaken willingly or
unwillingly by a parent.


Collaborative working in the interests of these young people undoubtedly presents major
challenges. One prerequisite for progress would seem to be that their needs and rights are
made a priority by those who because of geographical or organisational location do not
effectively recognise their responsibilities towards them. At the moment, health professionals
have written the literature which is specific to young people who use assisted ventilation.
Although the perspective of those professionals who will be principally involved in home life is
crucial in the earlier stages, it may not be easy for their work with a “future” client to be given
the priority which is essential. Similarly, policy-makers and strategic planners need to be aware
of the rights and needs of this "low-volume/high cost" group of citizens when introducing policy
and procedural changes.




                                                42
SECTION 7



LAW

The legal literature which affects the voices and choices of children who are described as
ventilator-dependent comprises the legal provisions themselves, procedures, guidance and case
law, and legal commentaries. There are provisions in law which affect the legal status of the
child’s view, the way in which the child’s wishes must be taken into account, the range of choices
to be made available, the way in which services are structured to allow for (or hinder) choice, and
the financing which controls the range and quality of choice available. The incorporation of the
UN Convention on the Rights of the Child into English law sets out a rights-based framework for
children’s law. The British Association for Community Child Health (1995) has applied this
framework to their work with children.


The Children Act (England) governs all services which affect children. It requires that in all
proceedings which affect the upbringing of a child, the court shall make the welfare of the child
the paramount consideration. It requires courts to ascertain the wishes of the child, as far as is
possible, and to take these into account in its decisions. This Act, with its associated guidance
regulations (vol 6 in respect of children with disabilities) governs the manner in which local
authorities may accommodate children either in residential accommodation (vol 4) or by fostering
(vol 3). In Noyes’ sample (Noyes 1999), 3 of the children were accommodated by the Local
Authority. Jardine et al (1999) refer only to children at home or in hospital, although the latter
category includes "community home" without additional explanation. Baldwin and Carlisle (1994,
p17) discuss the issues in obtaining accurate statistics about the residence of children with
disabilities away from home (see also Loughran et al, 1992). The provisions of the Children Act
govern in general the manner in which children are cared for when away from home. This is of
particular significance to the children in Noyes’ (1999) study who lived in hospital for extended
periods. The Act considers that the welfare of children is usually best promoted within their own
families. It identifies disabled children as “children in need” and since it requires all public services
to collaborate with the Social Services department in promoting the welfare of children so defined,
this has significant implications for the clinical staff responsible for children in hospital. In general,
it places a duty on public services to ensure that disabled children should live as normal a life as
possible.


The protection of children from abuse is an area of professional practice more closely
circumscribed by law, regulation and monitoring than any other in health or social care. Section

                                                   43
47 of the Act places a duty on the Local Authority to investigate instances of possible abuse, and
Working Together (DoH, 1991b) sets out the procedures for interagency collaboration. In general,
the Act sets out both to protect the family from unnecessary state intrusion whilst ensuring the
child’s right to be free from abuse. In a small proportion of cases, the spinal or other injuries
which necessitate ventilation are caused by caregivers (Samuels, 1996). In these cases, legal
provisions relating to the investigation of abuse, the court and other procedures regarding the
protection and continuing welfare of the child apply.


The Department of Health provides guidance about the welfare of children in hospitals (DoH,
1991a). It provides a guide to the Children Act for the attention of Health Service staff (DoH,
1991b). It attempts to ensure the co-ordination of children’s service planning (DoH, 1996b) and
has set out the Patient's Charter as it applies to children using the NHS (DoH, 1996a).


The Children Act lays down that Local Authorities must consider how they exercise their functions
under the Act whilst a child is accommodated by a Health Authority (Section 85). Since formal
plans must be made for children while away from home and the responsibility of the Local
Authority, it would seem reasonable that similar care is taken over children accommodated by an
NHS hospital. These plans, which are reviewed regularly, would include specific attention to
where the child is best accommodated. English law requires that the child and young person
participate fully in this process. A key worker should be appointed who is responsible for ensuring
this takes place. In the medical setting within which these reviews take place, for the majority of
the children in Noyes’ (1999) study, there was a real question as to the effectiveness with which
this process is carried out. As has been discussed earlier, the first report by Utting about children
away from home (1991) gave little consideration to these young people, but the second (1996)
showed a much greater awareness of the issues. The Audit Commission (1994) reported about
services to children under the Act, both in general, and with particular attention to interagency
collaboration. The Social Services Inspectorate reported on services for disabled children and
their families in 1994 (Social Services Inspectorate, 1994d).


In relation to medical treatments, the Act appears to specify that children and young people are
entitled to consent to or to refuse treatment “according to their age and understanding”.
Subsequent English case law, however, combines with various provisions to leave the law “in an
unsatisfactory state” (McHale et al, 1997). Amongst other discrepancies, children may be deemed
competent to consent to treatment (“Gillick Competence”) but not competent to refuse treatment
(see Alderson, 1993).




                                                 44
On occasions, a question arises whether treatment should continue for a child dependent on a
ventilator, when discontinuance will result in death. These are very difficult decisions, and the
legal issues about the best interests of the individual, the responsibilities of the court and the
clinician are set out by McHale et al, (1997 p 827-869, especially page 865). In re C (Medical Law
Monitor, 1997; see also Medical Law Monitor, 1998), the judge approved the withdrawal of
ventilation to be "in the best interests of the child" despite parental opposition.


All children have statutory rights to education under the UN Convention. The 1996 Education Act
(England) contains the same substantive provisions about “special educational needs” as its
predecessors the 1981 and 1993 Acts. In relation to young people with disabilities it is
supplemented by the Education (Special Educational Needs) Regulations 1994 (DfEE, 1994a -
which apply with relevant dates changed), and by the Code of Practice on the identification and
assessment of special educational needs (DfEE, 1996c). At the time of writing, the UK
Government’s White Paper Excellence in Schools (DfEE, 1997a) is applied to disabled children in
the Green Paper Excellence for all Children: Meeting Special Educational Needs (DfEE, 1997b).
This document states that its proposals are intended to support the parents of children who are
being assessed, to implement parent partnership schemes and to improve arrangements so that
there is “a reduction in the number of appeals to the Special Educational Needs tribunal” about
assessment and provision. The arrangements to be made for the education of sick children are
covered by a joint circular from the NHS Executive and the Departments for Education and for
Health (DfEE, 1994b - again, applying with relevant dates for statutes changed). The support of
children with medical needs in schools is covered by a statutory circular and associated practice
guidance (DfEE, 1996a and 1996b).


English civil law applies in relation to those children whose medical condition has resulted from
actions by a third party (for example, road traffic accidents). Although most of the costs of
medical treatment are still met by the NHS, the costs of social care are not automatically met by
the state. Extensive litigation may be involved in the court establishing an appropriate level of
compensation. There may be disputes about the boundaries between “social” and “medical” care.


The Chronically Sick and Disabled Persons Act 1970 (England) enables Local Authorities to
make a range of provisions for disabled people.          These apply to children as to adults, but
overarching authority lies with the provisions of the Children Act.
The English legislative framework specific to adults is quite different, and note has already been
made of some of the difficulties caused in the transition period. Some of the English provisions
about this age-related transition are contained in Sections 5 & 6 of the Disabled Persons
(Services, Consultation and Representation) Act 1986. The NHS and Community Care Act 1990


                                                   45
contains the main provisions in relation to adults with disabilities. In so doing, however, it refers
back to earlier substantive legislation, including the Chronically Sick and Disabled Persons Act
1970. There is extensive guidance and regulation associated with the 1990 law (summarised and
listed, for example as Appendix 1-3 in Mandelstam, 1998) much of which relates to the changes
introduced into both social and health services by splitting service provision from purchase
(commission) or from assessment. Parents of people with disabilities are also covered by the
Carers (Recognition and Services) Act, 1995 (Guidance: DoH, 1996c). The Disability
Discrimination Act 1995 applies to most of the areas discussed above.




                                                 46
SECTION 8



FINANCE

Individual and family finance

We found no UK research specifically about the financial issues for families in which a child is
dependent on a ventilator. Kirk (1998) summarises the issues in relation to children dependent
on all forms of health technology, and Baldwin and Carlisle (1994) examine in more detail the
research about children with disabilities. In the American literature, the otherwise very helpful
article by Dalton and Kirkhart (1985-6) seems to downplay the possible cumulative effects on a
family of continuing financial pressures caused by the presence of a “ventilator-dependent”
child. Wheeler and Lewis (1993) also placed little special significance on financial effects or
poverty on the family. By contrast, Yost et al (1988), Goldberg et al (1984), Aday et al (1989),
Quint et al (1990) and Leonard et al (1993) all refer to the situation familiar to the more
generalised UK studies which indicate that financial pressures can have a cumulative,
demoralising and destabilising effect. The possibility of the mother working may well diminish
precisely at the point at which costs rise dramatically, as special clothing, travel to specialist
centres, additional accommodation becomes necessary. Sevick et al (1996) attempt to
estimate the economic cost of home-based care (primarily with adults) and reported that family
members endured a considerable cost burden when caring for a relative at home.


Shipley (1997), like Kirk reports the generic finding that the pressures on families with
technology-dependent children show many similarities regardless of the technology involved.
Subject to the degree of disability experienced by the young people, the survey lists of
“practical support” and “financial support” which are presented by Baldwin and Carlisle (1994,
pp 42-43) are as applicable to families that have a “ventilator-dependent” child as they are to
other disabled children. Baldwin and Carlisle (pp 22-24) consider in some detail the evidence
about the depressed level of family income of families that include a child with disability. They
analyse a number of features and set out a telling range of comparisons with other groups in
the population.


At the time of this review (1999), the list given by Baldwin and Carlisle of applicable social
security benefits in the UK is still relevant, with the addition of Family Credit, to which parents
are entitled if on a low income. These benefits are presented in the Disability Rights handbook
(Disability Alliance, 1999). Relevant UK advice lines are provided by the Disability Alliance and
by the Benefits Agency Enquiry Line.

                                                47
Service finance

This section provides a brief overview of some of the features of service finance which emerge
from the literature we reviewed. However, this is a specialist subject and more detailed analysis,
with critical appraisal would require expertise in health economics and public service finance.


Key sources to be reviewed in such an appraisal would be UK reports internal to the Department
of Health, Health Authorities, the Audit Commission and individual NHS Trusts and Local
Authorities. It will be recalled that our search of the relevant bibliographic database for such
documents, SIGLE, produced no results. Evidently, a comprehensive review would require a
painstaking investigation of these possible sources. At the moment there is a growing literature by
clinicians which includes guidance about best practice, and recently a requirement for Health
Authorities to publish their strategies. In a complex field which presents difficulties in collaboration
and funding, good practice may be encouraged by administrators and financial managers
publishing descriptions of the ways in which local practice has ensured that financing does not
become an obstacle to meeting the needs and respecting the rights of these young people.

Costs


As the major studies emphasise, young people who are dependent on assisted ventilation are
a heterogeneous group (Aday and Wegener, 1988; Jardine and Wallis, 1998; Jardine et al,
1999; Noyes et al, 1999). Jardine and Wallis (1998) give illustrative costs for care, at 1997
prices, which vary from £240 per annum (with £500 capital costs) to £107,000 per annum (with
£18,000 capital costs), depending on medical condition and circumstances.


In the American context, Aday and Wegener (1988) made a systematic examination of the
costs of home and hospital care for each of the 141 children they researched. This major
study, however, was performed between 1984 and 1987 and it is difficult to use in a
contemporary context. Of the more recent American studies which quote costs, De Witt (1993)
is typical in estimating costs for hospital care to be $730,000 per annum compared with
$130,000 for living at home. In the UK, Ward (1996) refers to costs of £292,000 to £365,000
for intensive care treatment, £146,000 for transitional care, and £50,000 to £175,000 for home
care. These were quoted in a comment to an article by Davies which refers to the costs for a
particular child as £160,000 for the year's care at home (it is not clear whether these are costs
at 1994 levels, or adjusted to the date of publication which is 1996). In its report to the Chief
Executive of the NHS in 1997, the UK National Co-ordinating Group on Paediatric Intensive
Care quotes figures for paediatric intensive care of £25,000 per annum with set-up costs and

                                                  48
running costs of £40,000. They estimate costs of half or one third of these for a long-term
ventilation unit.   The regional specification for the North West region of the NHS quotes
"typical" costs (1998 basis) as £127,000 per annum with initial capital costs of £20,000.


Vick’s pilot study (1996) examines the costs and quality of life in relation to adults. She found
costs were lower and quality of life measures improved when individuals were able to live at
home.


In general, the clinical literature concludes that it is cheaper to provide a total package of
dedicated managed care at home than to provide hospital care. If generally applicable, these
would be welcome conclusions. They would bring financial considerations into line with the
desirable psychosocial outcomes. However, it would appear that considerable caution is needed.
American accounts refer to a system of medical funding based on private insurance, and
compare systems of managed care costed within this framework. Such a system produces costs
which are very different from those applicable in the UK context (Sevick et al, 1996; Ham, 1997).
The costs vary substantially depending on the amount of professional nursing care provided at
home. In the UK, experience of "community care” in relation to adults demonstrated that the
assumption that home care is cheaper than institutional care was quickly called into question
when true costs were evaluated. Harvey (1996) points out that although the costs of caring for a
child at home may be less than those of caring in a paediatric intensive care unit, caring for the
child at home does not save the expenditure on the intensive care provision. It is not clear that the
USA or UK studies address in any complete way the true costs for integrated social, health,
education and housing services.


Service Finance: Organisation


Jardine et al (1999) found that lack of agreement on funding prevented the discharge of 16 out
of 43 children waiting to go home. In their survey for one NHS region, Haines et al (1996)
report doctors' difficulties securing statutory funding. Of the 93 children at home, Jardine et al
(1999) found that the ventilation equipment of 8 children was funded either by the parents or
charitable sources; one child received the full cost of home care from the Social Services
department; and 84 children (90%) received funding and support from the local Health
Authority.
In the UK, the services required by these children and their families are provided and financed
by organisations which span the spectrum of health and social care. These include consortia of
Health Regions (who establish contracts for paediatric intensive and transitional care), Health
Authorities, specialist regional centres, local district general hospitals, community health trusts,


                                                 49
primary care providers, purchasing and provider units in residential, day care or fieldwork in the
Local Authority, voluntary and private organisations. Each of these may regard themselves as
having a significant stake in the budgetary and other resource arrangements for a young
person who is dependent on a ventilator.


It is difficult, however, to see how many of the items of expenditure can be rationally allocated
specifically to health status, social functioning, education or housing. The function of a mobility aid
for a young person does not change from health support to social support depending on when
and where the child uses it. Likewise, an improved computer-based communication system is not
specific to an education need rather than a social need because it was the teacher in an
educational context who identified its availability. Personal care assistance cannot neatly be
divided into educational support, social support and clinical back up. There is scope for
misunderstanding, for contested decisions, for delays to decision-making, for “cost shunting”
and for policies with “perverse incentives” (promoting for accounting purposes decisions which
are ultimately financially irresponsible and counter to the rights of children). Furthermore, each
operates under different, sometimes contradictory, sometimes competing, financial regimes
and general declarations of service policy). The parents in Noyes'           (1999) study echo the
reports in the literature (Shipley, 1997 and Jardine et al, 1999) in identifying the co-ordination of
service finance as the major source of delay in making appropriate arrangements. It seems as
if the modernisation and innovations in the NHS have yet to prove effective for this group of
patients. Capen and Dedlow (1998) suggest that issues such as responsibility for funding will
need to be resolved at a political level.


The needs of this specific “small volume/high cost” group may not be considered when major
structural or organisational changes are proposed or implemented for political, managerial or
professional reasons. It is easy to see how the wrong emphasis at national level can lead to a
significant lack of "seamless service", to disputes and delays over funding, and as a result the
abrogation of the individual rights of these young people.


The UK Government has declared its intention "to put the needs of users and carers firmly at
the centre of health and social services and to remove barriers to joint working ….. users and
carers want reliable, appropriate and integrated services" (DoH, 1998d, paras 2.1,2.2,4.35). At
the time of writing, it remains to be seen whether the provisions to create pooled budgets and
lead commissioning will in reality remove the obstacles to person-centred care created by
existing financial and organisational provisions.




                                                  50
SECTION 9


CONCLUSIONS AND KEY MESSAGES

The children and young people who are the subject of the review are medically stable. To
varying degrees, they are dependent on mechanical ventilation in order to breathe. There is a
wide variation in the degree of disability or intrusion that this involves. Their comparatively
small numbers contrasts with the costs of their care, their organisational significance to the
health service, and the attention required by policy makers and practitioners at all levels to
ensure that their human rights are respected and their legitimate needs are met.


In analysing the literature relevant to the voices and choices of these children, this review
highlights two sets of conclusions: messages from the literature and messages about the
literature. Looking at the latter first, the important themes are:


Messages about the literature


   There has been a substantial growth in the UK literature since Noyes’ (1999) study was first
    planned early in 1997. Significant publications since that time include: A Framework for the
    Future (NHS Executive report setting out policy on paediatric intensive care, DoH, 1997
    a,b); NHS regional strategy documents (NHS, 1999); authoritative clinical guidelines;
    authoritative information about the numbers and characteristics of the young people
    concerned; studies of the views of parents; and a study of the views of the young people
    themselves. All these filled significant prior gaps.     In addition, there is the prospect of
    maintaining for the future a database of the numbers and status of the young people
    involved, and a requirement for audit placed on NHS regions or Health Authorities.
   Overall, however, the American literature is larger and longer established, Governmental
    concern having begun in the early 1980's.
   There is a larger literature about children or young people with a disability and their
    families. There is a growing literature about children who are dependent on medical
    technology. Further research is needed to establish the applicability of many specific
    findings in this literature to children who use assisted ventilation.
   There is only a small literature which presents the views and choices of the children and
    young people in their own way. There seems to be little discussion of the issues involved in
    using the young people and their families as the experts in this field.




                                                 51
   This is linked to the dearth of research in which the children and young people are
    themselves part of the research group.
   Those who have written and published about this subject are clinical specialists and
    specialist groups. In addition to purely clinical material they have published guidelines for
    management and co-ordination alongside empirical information about the status of the
    young people concerned. There is a need for comparable research which identifies the
    implications for strategic collaborative management, for social care services, for education,
    housing, and finance.
   The literature presents analyses based on needs. There is an absence of literature which
    reviews services in the light of the rights of these young people. It may be thought that
    meeting needs will ensure that rights are respected, but in reality the situation is more
    complicated. For example, whilst services are striving to meet needs, there may be an
    acceptable variation in the degree to which they are met. Respecting rights, on the other
    hand is an absolute requirement. The existence of the Children Act (England) and the UN
    Convention on the Rights of the Child provide instruments to enable the review of services
    in the light of children's rights.
   There is a need for greater dissemination of examples of good practice specifically about
    this group of children and young people. “Good practice” includes organisational, financial
    and management arrangements alongside individual services provided by clinical,
    educational, social and housing services.
   There is a need for evaluative research about the services for this group of children and
    young people, and their families. Again, this needs to address service organisation and
    collaboration alongside individual provision from a wide range of agencies.
   There is a need for survey research which measures the variation in services in different
    geographical areas. Further research is needed to investigate whether Health, Social,
    Education and Housing Authorities have joint strategies to implement the rights of these
    young people.
   The existing literature is poor in specifying demographic features of the subjects studied
    and the impact of difference (of gender, “race”, religion or culture, for example). It seems
    highly likely however, that these are significant variables/intermediary factors in ensuring
    appropriate services.
   Despite the vulnerability of these young people to social exclusion, there seems an
    absence at the moment of social investigation and recommendation about the factors
    promoting “inclusion”. Attention needs to be focussed on their participation in everyday life,
    their participation in decision-making, the promotion of assisted communication, the
    availability to them of people who understand and have leverage within the systems on
    which their quality of life depends.

                                                52
Messages from the literature


   Because systems and policy have not been designed to take significant account of the
    “low-volume/high cost” service to this group of people, there are significant dangers that
    the human rights of this group of children may be infringed. To act in accordance with the
    UN Convention on the Rights of the Child and the Children Act (England) it appears that
    Health, Education, and Social Services need to pay specific and proactive attention to the
    rights of this group of citizens.
   It is not clear who is responsible for funding the care and services required by these
    children and young people. Several studies highlight the competing and often conflicting
    priorities of the various funding agencies involved. This has had a deleterious effect on the
    children and their families. Issues of funding need to be resolved at a political level.
   Many of the young people and their families experience the services provided as a
    challenge as opposed to a support.
   The most effective situations appear to be those in which one person has clear
    responsibility as key worker/case manager with authority over contracts, to make
    appointments to supervise other staff and to negotiate with other services involved. This
    person should be familiar with the needs and practicalities of children who are dependent
    on mechanical ventilation. This is an essential cost which should be included in budgetary
    provision.
   Numerous studies have shown the deleterious effects of living for prolonged periods in
    hospital. American studies have shown improvement in health status as well as emotional
    and social wellbeing when the children or young people live at home. However, without
    coherent multi-disciplinary and inter-agency planning which starts early, these children may
    live for unnecessarily long periods in hospital.
   Inadequate attention appears to be paid to the attachment needs of the children, their
    parents and their siblings (especially when the child is in hospital). Strategies need to be
    developed to improve the nature and organisation of the hospital environment and
    continuity of care.
   Children who live away from home need access to an independent advocacy service.
   Confronted with the contrasting risk factors of the threats to life daily faced by these young
    people (in the extreme case, there is only a 3-minute “window” of safety after interruption
    of power supply or other equipment dysfunction), the literature reports studies which
    demonstrate contrasting dimensions to the situation. For example, in one case study the
    protocols for allowing a child simply to pass out of the ward door embodied a degree of


                                                53
    surveillance and control which from the young person’s point of view are extremely
    restrictive and intrusive. What is progress from one perspective is analysed by some other
    studies as a massive and ill thought through shift of the burden of medical, clinical and
    financial responsibility on to parents.
   Children and parents prefer the child to live in the family at home. In the various situations
    in which this is not possible, it is not clear that support for the young person, parents and
    substitute carers has been adequately planned and managed. There is concern that some
    young people may be experiencing multiple moves with no stability, and inadequate
    appraisal of their attachment relationships. The literature surrounding the Children Act and
    its principles indicates that Local Authorities and other agencies have a duty to provide
    independent advocates and to ensure that plans are made about the needs of children
    who are away from home.
   Specific strategies are required in order to support the rights and continuing responsibilities
    of parents in relation to this group of young people. The issues involved in achieving this
    were rarely discussed in the literature. For significant periods in a child’s life, support for
    family contact, for involvement and participation in decision-making and planning is likely to
    be a major area to which services should pay attention.
   The financial implications for families both while a child is in hospital and when they are at
    home are not adequately addressed at present.
   Unsuitable housing is a major problem.
   There is a need for significantly improved provision of respite care.
   For these children as for others in general with disability, the public services deal
    inadequately with the transition to adulthood, causing problems for parents and young
    people and creating uncertainties about their aspirations for the future.
   Education authorities need a joint strategy for education provision. National guidance and
    local policy in relation to education often appears to be failing to meet the needs of these
    children and young people.
   Strategies for commissioning, financing and developing services must take account of
    these young people and their parents. In the UK, it is not at the moment clear that this has
    happened in the introduction of commissioning by Primary Care Groups.
   After introducing developments, there is a need to monitor the outcomes for this group of
    young people in respect of their rights.




                                               54
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                                              86
USEFUL ADDRESSES

Ability Magazine                              ASC Action for Sick Children
(British Computer Society)                    Argyle House
Room C126 EASAMS Ltd                          29-31 Euston Road
West Hanningfield Road                        London NW1 2SD
Great Baddow
Chelmsford                                    Assistive Communication Aids
Essex CM2 8HN                                 Centre (ACS)
                                              2nd Floor, Charing Cross Hospital
Access to Communication                       Fulham Palace Road
and Technology (ACT)                          London, W6 8RF
Oak Tree Lane Centre
Oak Tree Lane                                 Association to Aid the Sexual and
Selly Oak, Birmingham                         Personal Relationships of People
West Midlands B29 6JA.                        with a Disability (SPOD)
                                              286 Camden Road
ACE (Aids to Communication                    London N7 0BJ
in Education)
Ormerod School, Waynflete Road                Association for All Speech
Headington                                    Impaired Children
Oxford OX3 BDD                                347 Central Markets
                                              Smithfield
ACE/ACCESS Centre                             London EC1A 9NH
1 Broadbent Road
Watersheddings                                Barnardos
Oldham                                        Tanners Lane
Greater Manchester OL1 4HV                    Barkingside
                                              Ilford
ACT Association for Children with Life        Essex
Threatening Conditions                        IG6 1QG
65 St Michael’s Hill
Bristol BS2 8DZ                               CALL Centre
                                              4 Buccleuch Place
Advisory Centre for Education                 Edinburgh
Dept. A, Unit 1B Aberdeen Studios             EH8 9LW
22 Highbury Grove
London                                        Carers National Association
N5 2DQ                                        20-25 Glasshouse Yard
                                              London
Aid for Children                              EClA 4JS
with Tracheostomies
215a Perry Street                             CENMAC/MACE
Billericay                                    Eltham Green Complex
Essex CM12 0NZ                                1A Middle Park Avenue
                                              London SE9 5HL
ASC Advice, Advocacy
and Representation                            Childline
Service for Children                          Freepost 1111
1-3 Greengate                                 London N1 0BR
Salford M3 7NN                                Tel 0800 1111




                                         87
Children’s Rights Development              Communication Clinic
Unit (CRDU)                                Newcomen Centre
235 Shaftesbury Avenue                     Guy’s Hospital
London WC2H 8EL                            St Thomas’ Street
                                           London SE1 9RT
Childhood Research and
Policy Centre                              Communication Matters
Social Sciences Research Unit              Lancashire Schools IT Centre
18 Woburn Square                           103 Preston New Road
London WC1H ONS                            Blackburn
http://www.ioe.ac.uk/ssru/crpc.html        Lancs BB2 6BJ

Child-to-Child Trust                       Congenital Central Hypoventilation
20 Bedford Way                             Syndrome Family Support Network
London WC1H 0AL                            71 Maple Street
                                           Oneonta
Christopher Reeve Foundation               NY 13820 USA
PO Box 277
FDR Station                                Contact a Family
New York                                   170 Tottenham Court Road
NY 10150- 0277 USA                         London WC1P 0HA

College of Occupational Therapists         The Council for Disabled Children
106-114 Borough High Street                8 Wakley Street
London SW1 1LB                             London EC1V 7QE
http://www.cot.co.uk
                                           Disabled Living Foundation
“Communicate”                              380 – 384 Harrow Road
The Lodge                                  London W9 2HU
Regional Rehabilitation Centre             http://www.dlf.org.uk
Hunters Road
Newcastle-upon-Tyne                        Department of Health /
NE2 4NR                                    Social services
                                           Web site
Communication Aids Centre                  http://www.open.gov.uk
Musgrave Park Hospital
Stockmans Lane                             DPPI – Disability Pregnancy
Belfast BT9 7JB                            and Parenthood International
                                           1 Chiswick Staithe
Communication Aids Centre                  Hartington Road
Rookwood Hospital                          London W4 3TP
Fairwater Road
Llandaff                                   Drugs Advice and Information Service
Cardiff CF5 2YN                            (DIAS)
                                           38 West St
Communication Aids Centre                  Brighton BN1 2RE
The Wolfson Centre
Mecklenburgh Square                        Family Fund Trust
London WC1N 2AP                            Rowntree Wharf
                                           PO Box 50
                                           York YO1 9ZX




                                      88
Federation of Access Centres            NALC – National Association of
c/o Hereward College                    Laryngectomy Clinics
Bramston Crescent                       Ground Floor,
Tile Hill Lane                          6 Rickett Street,
Coventry CV4 9SW                        London,
                                        SW6 1RU
Health Wise
NHS helpline (9am – 9pm daily)          NAPSAC – National Association for the
0800 66 55 44                           Protection from Sexual Abuse of
                                        Adults and Children with Learning
International Ventilator                Disabilities
Users Network and                       University of Nottingham’s Medical
Resource Directory                      School
4207 Lindell Boulevard                  Queens Medical Centre
#110 Saint Louis                        Nottingham NG7 2UH
Missouri
63108-2915 USA                          NCH Action for Children
                                        85 Highbury Park
InterVENTions: a ventilatory            London N5 1DU
care newsletter
Respironics Headquarters                Norah Fry Research Centre
1501 Ardmore Boulevard                  3 Priory Road
Pittsburgh                              Bristol BS8 1TX
Pennsylvania
15221-4401 USA                          Ondine’s Support Group
                                        24 Larners Road
Joseph Rowntree Foundation              Dereham
The Homestead                           Norfolk NR19 1LE
40 Water End
York YO30 6WP                           Parentability
www.jrf.org.uk                          C/O National Children’s Trust
                                        Alexander House
KEYCOM                                  Oldham Terrace
29 Bryson Road                          London W3 6NH
Edinburgh EH11 1DY
                                        Royal Institute of British Architects
Mary Marlborough Centre                 66 Portland Place
Communication Aids                      London W1
Windmill Road
Headington                              SCAMP – Switch, Communication and
Oxford, OX3 7LD                         Mobility Provision
                                        Chailey Heritage
National Association for the            North Chailey
Education of Sick Children              Lewes
18 Victoria Park Square                 East Sussex BN8 4EF
Bethnal Green
London E2 9PF                           Social Policy Research Unit
                                        The University of York
National Association of Hospital        Heslington
Play Staff                              York YO10 5DD
Thomas Coram Foundation for
Children
40 Brunswick Square
London WC1N 1AZ


                                   89
Spinal Injuries Association          The Local Government Ombudsman
76 St James’s Lane                   21 Queen Anne’s Gate
Muswell Hill                         London SW1H 9BU
London N10 3DF
                                     The Who Cares? Trust
SCTCI (Communication Aids)           Kemp House
Rutherglen Maternity Hospital        152-160 City Road
120 Stonelaw Road                    London EC1V 2NP
Glasgow, G73 2PG                     http://www.thewhocarestrust.org.uk

TASSCC (Communication Aids)          United Kingdom Paediatric Long-
Beechwood School                     term Ventilation Working Group
Raeden Park Road                     C/O Dr Colin Wallis
Aberdeen AB2 4QI                     Great Ormond Street Hospital for
                                     Children NHS Trust
The Health Service Ombudsman         Great Ormond Street
for England                          London WC1N 3JH
11th Floor Millbank Tower
Millbank                             Wired for Health
London SW1P 4QP                      Department of Health web site
                                     http://www.wiredforhealth.gov.uk




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