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Caring for children with complex
and continuing health needs
Hewitt-Taylor J (2005) Caring for children with complex and continuing health needs.
Nursing Standard. 19, 42, 41-47. Date of acceptance: November 15 2004.
Summary
Advances in medicine and technology mean that more children can
survive with complex and continuing health problems. These children
have specific needs that healthcare professionals should consider
when providing and planning care. This article discusses home care
provision, equipment and funding as well as family support needs.
Author
Jaqui Hewitt-Taylor is practice development fellow, the Institute of
Health and Community Studies, Bournemouth University.
Email: jhtaylor@bournemouth.ac.uk
Keywords
Children: disabilities; Community paediatric nursing
These keywords are based on the subject headings from the British
Nursing Index. This article has been subject to double-blind review.
For related articles and author guidelines visit our online archive at
www.nursing-standard.co.uk and search using the keywords.
DEVELOPMENTS IN medicine and technology
mean that an increasing number of children
survive with health problems that require long-
term medical and technical interventions. The
Department of Health (DH) (1997) identifies the
needs of this population.
It is difficult to determine the exact number of
children requiring long-term specialist health care
because these children are an extremely diverse
group (Glendinning and Kirk 2000). The broad
description of children with complex and
continuing health needs includes children with
tracheostomies, those who require long-term
assisted ventilation (constant positive airway
pressure, bilevel positive airway pressure and/or
oxygen therapy), assisted enteral or parenteral
feeding, and the administration of intravenous
drugs, and may include children with severe
movement disorders or mobility limitations.
Some of the children in this group require
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intermittent respiratory support but have no
associated disabilities, while others have multiple
disabilities requiring constant supervision and
more than one type of intervention or assistance.
It is likely that, as the population of children
with complex and continuing health needs
continues to grow, nurses in a variety of areas will
provide care for them and their families. This
includes paediatric nurses working in hospitals,
those providing care in the community, practice
nurses, school nurses and health visitors. When
these children reach adolescence their care will be
transferred to the adult sector. Thus, nurses
working in paediatric and adult services are likely
to need to have an awareness of the needs of this
group of patients.
This article presents an overview of some of
the major considerations in the care of children
with complex and continuing health needs in
terms of care provision and family support.
Although the article focuses on discharge
planning and establishing home care, this care is
often likely to be required for many years and
equal attention should be given to maintaining it.
Care provision
One of the major issues for families and
healthcare providers is where children with
complex and continuing health needs should be
cared for. The type of interventions and
equipment used would traditionally have
required hospitalisation. Where this includes
assisted ventilation it would have meant care was
provided in an intensive care setting (Lumeng et
al 1999, Kirk and Glendinning 2002). However,
in long-term situations it is considered
inappropriate for children to be cared for in
hospitals and, in particular, in intensive care
units (ICUs) because their developmental and
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psychosocial needs are unlikely to be met in this
environment (Neufeld et al 2001).
ICUs necessarily focus on preserving life and
stabilising children during acute illnesses. It is
inevitable that children in ICUs who require
long-term ventilation, but who are otherwise
medically stable, are exposed to over or under-
stimulation and lack of normal developmental
experiences (Boosfeld and O’Toole 2000).
Even outside the intensive care environment, an
acute hospital is an inappropriate place for
children to grow up in for educational,
psychological and social reasons. The increase in
the number of children requiring complex
technological or medical interventions has been
accompanied by recognition that, wherever
possible, children should be cared for at home so
that their psychological, developmental and social
needs are met (NHS Executive (NHSE) 1997): this
includes chronically ill children (Balling and
McCubbin 2001, Neufeld et al 2001). Appierto et
al (2002) suggest that when children with complex
and continuing health needs are cared for at home
their physical, psychosocial and developmental
outcomes are improved, and that this is a more
cost-effective option for the NHS.
In addition, Taylor (2000) suggests that
parents are generally provided with better
information about their children when their care
is provided outside the hospital environment. In
hospital, the power ratio favours healthcare
staff, and parents can be considered as visitors in
an unfamiliar environment. This situation is
reversed in the family home, as healthcare staff
are the visitors. Enabling parents to provide care
for their child at home may assist in empowering
them and promote greater autonomy in decision-
making about the child.
Barriers to home care
Despite the benefits of home care for children
with complex needs, its provision is often beset
with problems (NHSE 1997). Noyes (2002)
found that nearly all the young people they
studied requiring long-term assisted ventilation,
spent significant periods of time in hospital when
they did not want, or have, a medical need to be
there. A variety of factors delay children with
complex needs being discharged from hospital.
These include the time taken for planning and the
priority given to this by healthcare staff and
management, staffing and funding issues in the
health service, lack of collaboration between
services, and social and financial issues for
individual families (Jardine et al 1999, Noyes
42 june 29 :: vol 19 no 42 :: 2005
2002). It is essential to consider these factors to
provide appropriate high-quality care.
Liaison and planning
Planning discharge from hospital of children
with complex needs is time-consuming and
requires ongoing liaison between hospital and
community staff. This can become low priority in
a busy work environment and, despite the
desirability of care at home, the practicalities of
discharge may take time. The major issues to be
considered are summarised in Box 1.
Where children with complex needs are cared
for in the family home their parents often provide
the type of care that would usually be the domain
of professionals (Kirk 2001). The development
of the skills, knowledge and confidence to enable
parents to provide such care requires
considerable training and support (Boosfeld and
O’Toole 2000). This should include visits to the
home by health professionals to accustom
parents to caring for their child at home, and to
identify and address practical problems before
the child is discharged from hospital. Preparation
for discharge home also requires liaison between
services to prevent inconsistencies in service
provision. For example, if services are not
co-ordinated, families may be provided with
equipment that is different from that which they
have been taught to use in the hospital, or items
prescribed in hospital may not be available in the
community. Given the range of services that will
be involved in supporting such families,
teamwork is essential for discharge planning and
ongoing care to proceed smoothly.
BOX 1
Preparation for home care before discharge

Promote liaison between hospital and
community

Organise adjustments to accommodation

Teach parents and carers practical skills

Discuss psychological and emotional issues
with family

Develop communication between services

Promote communication within the
multidisciplinary team

Organise equipment and supplies

Plan ongoing health and social care
appointments

Consider the effects on all family members
and the support available
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A part of preparation for discharge should be
enabling parents to cope with the psychological
aspects of performing medical tasks on their
children. Glendinning and Kirk (2000) found that
this aspect of care is often overlooked, with the
focus being on providing physical and technical
care. Wilson et al (1998) identify the potential
conflict in the nurturing and protecting role of
parents because they may induce suffering when
administering uncomfortable healthcare
treatment to their children. Preparation for care
at home and support in ongoing care should allow
parents to identify and express their feelings
about providing what may include invasive care
for the child, for example, changing tracheostomy
tubes or suctioning an artificial airway.
Once the child is home, a lack of
co-ordination between services can overwhelm
parents with visits from different professionals,
and what may be perceived as an unnecessary
degree of infringement on their privacy. The
remit of professionals’ distinct roles may not
always be clear to parents. If communication
appears to be poor, parents may feel that they are
the only liaison between services and individuals,
which does little to add to their confidence in the
service (Glendinning and Kirk 2000). However,
Glendinning and Kirk (2000) found that the
professional groups feel they work well together
and value each other’s contributions.
Co-ordination of services could take place in
teams which include clinical nurse specialists,
community children’s nurses, generalist health
visitors and district nurses. Information can be
shared between those who have knowledge of
local resources with specialists who have covered
a wider region, while specialists can assist general
staff with information about specific disorders
and interventions. This interaction of individuals
and services providing specific input and
information, and supporting one another in
providing care to the family would be ideal.
Families could also receive explanations of the
necessity for multidisciplinary involvement to
promote confidence that individual services are
working in a co-ordinated manner.
The Children’s National Service Framework
(NSF) (DH 2004) specifies that appointments
should be planned to minimise disruption to
family life. This includes planning appointments
as well as visits to the home. Despite the
suggestion for more flexibility in the timing of
healthcare appointments (DH 1997) this is not
always a reality, and attending a range of
appointments can add to the burden of care for
parents. One problem may be that there is no
overall co-ordination because appointments are
usually in different departments. Such difficulties
should be considered when arranging the timing
and location of appointments.
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Equipment and funding
It has been suggested that caring for children with
long-term complex and continuing needs in an
acute hospital setting is an inappropriate use of
resources (Boosfeld and O’Toole 2000). However,
once the child is discharged from hospital, the
community trust in the child’s home area is usually
required to provide equipment, consumables and
nursing support (Glendinning and Kirk 2000).
Prescribing costs shift to the local GP or primary
care organisation and local authorities have to
provide support in the child’s home and school.
Parents and community nursing staff have
reported disputes between specialist hospitals,
community health services and GPs, and between
directorates in the same trust over funding
(Glendinning and Kirk 2000). This may be
frustrating for staff, and stressful for families
where ongoing access to services or equipment is
delayed or complicated by these issues. The
Children’s NSF (DH 2004) identifies the need for
such practicalities to be addressed. Ideally,
funding for all aspects of care should be agreed
before discharge home, and made explicit to all
concerned. Exactly who is responsible varies but
there should be an identified named co-ordinator,
often a nurse on the ward or unit from which the
child is being discharged.
Obtaining equipment and supplies has been
identified as a significant stress factor for families
(DH 2004). Supplies are sometimes unreliable
and difficult to obtain, with parents having to
travel, sometimes at short notice, to a specialist
hospital some distance away. Given the problems
of organising even short journeys from the home
when a child with complex needs is involved, this
is a major undertaking. Collecting bulky supplies
can incur considerable costs and inconvenience
for families, even when the collection point is
nearby. In cases where a child’s condition is
unpredictable, accurate estimation of needs can
be impossible, which suppliers may not
understand. For example, it might be impossible
to accurately specify how many suction catheters
will be needed for a child who has a tracheostomy
and also has frequent respiratory tract infections.
All of these factors add considerably to the
stresses involved in the provision of home care
for children with complex needs. The Children’s
NSF (DH 2004) identifies that supply of
equipment and consumables should be organised
to minimise disruption and that bulky supplies
should be delivered directly to families.
Although Appierto et al (2002) identify care at
home as the most cost effective option for such
children, it may shift the financial burden from the
NHS to the family (Wilson et al 1998, O’Brien and
Wegner 2002). The cost to the family, in financial
and emotional terms, is potentially high and may
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be a burden that cannot be accommodated
without significant support. Although the
practicalities of care already described are vital to
smooth functioning and reduction of stress for
families, education for healthcare staff about the
emotional wellbeing of family members caring for
a child with complex needs at home is essential in
supporting the family.
Effects on the family
Wilson et al (1998) suggest that caring for a child
with complex needs at home requires absolute
involvement from parents in terms of accepting
responsibility, refusing to give up, problem
solving, decision-making, learning, teaching,
managing and co-ordinating. All of these occur
in the context of the child’s illness, but also in the
context of other aspects of family life.
The aim of caring for a child with complex
needs at home is to create a safe environment
with the least possible disruption to normal life
(Boosfeld and O’Toole 2000). There are many
factors which may disrupt the family’s
functioning. Unlike healthcare staff, families
have no time off duty, and their homes are
disrupted by medical equipment, disturbed sleep,
and visits from a range of healthcare
professionals (Glendinning and Kirk 2000).
Parents have to learn about medical and
technical aspects of care, make many difficult
adjustments to their everyday life and
accommodate the child’s needs within numerous
aspects of family life and relationships (Aday and
Wegener 1998, O’Brien 2001).
Housing adjustments may be necessary, which
affect the whole family, particularly where
relocation is involved. Glendinning and Kirk
(2000) found that holidays require extensive
planning and are often taken near a regional
centre hospital in case of the need for medical
help. However, even more day-to-day tasks, such
as taking siblings to out-of-school activities, and
meeting with friends is likely to be problematic.
Disruption at every level may be more than a
family can accommodate. Decisions on the best
place to care for children with complex needs
involves seeing the family as a whole, and
considering the impact on all members.
Incorporating the needs of all family members
in decision-making means that ethical debates
must take into account the needs of the child and
the family. Ethical decision-making is complex in
all healthcare situations, but particularly in
decisions about care for children with complex
and continuing health needs. The principles of
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beneficence and non-maleficence (Fletcher and
Buka 1999) should take into consideration who
will benefit, and whose benefit is the most
important: the benefit to the child, their siblings or
their parents? For example, although the child’s
wellbeing is paramount, every child’s wellbeing,
including that of siblings, must be considered. The
principle of utilitarianism (greatest good for the
greatest number as a guiding principle) (Draper
and Sorell 2002) is also a consideration in ethical
debates and, in this case, will mean that issues
beyond the child and the immediate family may
need to be taken into account.
Families’ existing social support networks
may be significantly altered when they care for a
child with complex needs at home. For example,
at least one parent is unlikely to return to work.
This may mean loss of friends, loss of common
ground or experience with friends and the need
to create new social networks at a time when the
need for support is high. It may also impact on
parents’ sense of identity, for example, if their
career pathway is unexpectedly terminated.
These factors should be considered in planning
the care of a child with complex needs, and in
providing them with ongoing care and support.
Wilson et al (1998) suggest that the coping
strategies that parents adopt in caring for a child
with complex needs include adjusting to the
child’s limitations and the resultant need to alter
their expectations. The authors describe the need
to reframe time, often concentrating on the
present or near future to enable parents to hope
for progress, and to reduce the threat associated
with uncertainty. It may appear that families do
not accept the child’s long-term prognosis or
likely progress. However, what may appear to be
an unrealistic expectation may be a part of a
coping strategy that enables parents to continue
to care for their child. A summary of the main
issues faced by families of children with complex
and continuing health needs is provided in Box 2.
Siblings
It has been suggested that having a brother or
sister who is chronically ill may have an adverse
effect on siblings, for example, by parents having
less time to spend with them than would be the
case for a child whose brother or sister did not
have complex needs. Sharpe and Rossiter’s
(2002) meta-analysis shows that siblings of
children with a chronic illness experience some
negative effects compared with those who do not
have a chronically ill sibling. They also found
that illnesses which necessitate daily treatment
regimens are more strongly associated with
negative effects on siblings than those that do
not. Most children with complex and continuing
health needs will require daily treatment of some
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kind, and the potential for adverse effects on
siblings is highly relevant to this group. Concerns
about adverse effects on healthy siblings can add
to parental stress (Taylor et al 2001). Therefore,
it is useful for nurses to be aware of possible
effects on siblings and to support and advise
parents appropriately. Taylor et al (2001) found
that emotional symptoms and psychopathology
were not related to type or severity of illness or
prognosis, but to whether the sibling had
experienced an acute episode of illness in the past
six months. These findings may give healthcare
professionals and families some guidance about
the times when siblings are most likely to require
additional support and emotional input.
Williams (1997) and Taylor et al (2001) found
that well siblings’ knowledge about their brother
or sister’s illness, their attitude towards the
illness, adjustment to it, their own self-esteem,
and feelings of social support, including their
mother’s awareness of their feelings, were
interrelated and related to their adjustment. For
example, understanding why their brother or
sister requires assisted ventilation, and why they
need the equipment and care that they do, can
affect how a child feels about their sibling’s needs
and the effect this has on their life.
This suggests that healthcare staff and
families should consider developing siblings’
knowledge of their brother or sister’s illness,
and that exploring their attitudes and feelings
and enabling them to gain appropriate social
support is likely to be beneficial. Taylor et al
(2001) also found that adjustment is
determined by the affect that the child’s illness
has on family functioning, and the degree of
maternal emotional distress resulting from this
and siblings’ relationships with adults other
than their parents.
Despite the risk of adverse effects, Taylor et
al’s (2001) study showed that, although siblings
of children with chronic health problems had a
significantly increased risk of experiencing
emotional problems compared with the general
population, the great majority had levels of
adjustment in the normal range. It is clear that
the experience of having a chronically sick sibling
is affected by a number of factors, but also that
adverse effects are not inevitable. Healthcare
professionals should be able to identify and
reassure parents about this as well as supporting
them in caring for the family unit as whole.
Caring for experts
The parents of children with complex needs are
often more knowledgeable about the
practicalities of their child’s care, and associated
disease processes, than many healthcare
professionals. Expert patients are frequently
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involved in teaching professionals (DH 2001)
and while the DH document focuses on adults,
and does not specifically discuss children with
complex needs and their families, the principle
applies equally to them because they are experts
in their care.
Glendinning and Kirk (2000) found that
family members regularly perform procedures,
such as changing tracheostomy tubes and
initiating and supervising assisted ventilation,
which are outside the knowledge or experience of
some healthcare staff. Parents also become
experts in monitoring their child’s condition and
are often able to detect changes earlier than
professionals, using intuition and knowledge of
the child rather than measurable tests
(Glendinning and Kirk 2000).
Although redressing parents’ power in relation
to healthcare staff is in keeping with the ideal of
patient empowerment that is central to nursing
(Royal College of Nursing 2003), this can be
daunting for staff. Glendinning and Kirk (2000)
found that some professionals feel threatened by
‘expert parents’ and some parents felt that
professionals avoided them for this reason.
The Expert Patient (DH 2001) recommends
that expertise should be shared between healthcare
professionals and patients, with patients having
expertise in their illness, social circumstances,
attitudes to risk, values and preferences, and
healthcare professionals having expertise in
BOX 2
Effects on families of children with complex and continuing
health needs

Changes to housing

Constant supervision can make other basic activities difficult to
carry out

Effects on siblings – relationship with parents, disruption to
siblings’ lifestyle, emotional and psychological responses to
brother or sister with long-term care needs

Employment and self-identity of family are likely to alter
radically

Existing support networks may be altered significantly

Healthcare professionals’ visits interrupt family life

Holidays affected

Interrupted sleep

Medical and technical care as well as childcare must be
incorporated into daily life

Need to reframe time and expectations of child and self

Parents’ relationships with partner and other children affected

Unpredictable needs: difficult to plan activities
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diagnosis, disease processes, prognosis, treatment
options and outcome probabilities.
Families of children with complex needs are
often well informed about treatment options and
the practicalities of medical care, as well as
personal aspects of chronic illness. This may make
encounters between families and professionals less
clear-cut in terms of areas of specialism, and more
threatening to professionals, because differences
in knowledge provide a basis from which parents
can challenge professionals (Glendinning and Kirk
2000). Shaw and Baker (2004) identify that many
medical staff appear to view expert patients as
demanding and unreasonable, and that the
information they present about treatment options
may be of limited value.
A challenge for professionals is to work in
partnership with families, sharing knowledge
skills and resources, and being able to discuss
sources of information, the benefits of treatment
and limitations. Donaldson (2003) suggests that
this requires changes in attitudes and modes of
interaction by healthcare professionals and
patients. Kennedy (2003) states that polar
positions, where patients are seen as passive
recipients of care or where professionals are
viewed as being there to take orders, should be
avoided. Instead, meaningful dialogue and
pooling of information is the key. This balance is
not easy to achieve and requires consistent
negotiation, effort and honesty on both sides. The
issues raised in each situation vary, but the
principal challenges for healthcare professionals
relate to parents’ knowledge of the child, the
child’s disease/disorder, current treatment options
and ongoing treatment, power issues, working in
the home environment, negotiating medical and
technical care, and negotiation related to
childcare and professionals’ role in the family.
Support for parents
Providing ongoing care for a child with complex
needs can be exhausting. The Children’s NSF
(DH 2004) recommends provision of
appropriate support for families, not only in
times of crisis, but on a day-to-day basis.
However, the practicality of providing such
support requires decisions on where to provide
the support and who should provide it.
One option is full-time nursing in the family
home. This has advantages, but also intrudes on a
family whose lifestyle is already disrupted (Aday
and Wegener 1998, Baumgardner and Burtea
1998, Valkenier et al 2002). In cases where
full-time support is required negotiation between
healthcare providers and the family is a key aspect
of providing support (Graves and Hayes 1996).

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This includes negotiation of roles and
responsibilities for medical procedures, as well as
negotiation of non-medical aspects of care, such as
child rearing expectations, and relationships
between carers and the family (O’Brien and
Wegner 2002). In cases where health professionals
are not providing full-time assistance, some of the
above considerations still apply.
In addition to providing day-to-day support,
respite care is an important resource for families
(Neufeld et al 2001, Olsen and Maslin-Prothero
2001). However, obtaining suitable respite care
may be problematic for families Robinson et al
(2001) and Neufeld et al (2001). Jardine et al
(1999) found that only 17 per cent of families
providing care for a child requiring assisted
ventilation had respite care in place. Olsen and
Maslin-Prothero (2001) identify the problem of
obtaining respite care at short notice. Where
respite is provided is also an issue. The ideal
location is one that the family chooses, but in
reality this may not be easy to achieve. Optimum
care provision requires negotiation between
services so that the child’s and family’s needs are
met appropriately.
Conclusion
The number of children and young people who
require ongoing medical and technical
interventions is likely to increase (DH 1997).
Nurses need to be aware of the physical
requirements of children with complex and
continuing healthcare needs, as well as
psychosocial and developmental needs and the
needs of the family as whole. Ethical and
management issues that affect care also need to
be considered.
Nurses in a variety of fields will be engaged
in caring for children with complex needs and
their families, and should be aware of the range
of issues involved in planning and delivering
care. This includes planning to facilitate
long-term care in the most appropriate setting,
multi-disciplinary liaison, liaison between
primary care and acute hospital settings,
negotiation of roles and responsibilities, and
sharing knowledge and skills with parents.
Caring for children of ‘expert parents’ can
be daunting, and the skills needed to develop a
good working relationship with parents
include communication skills and confidence.
It is important to promote meaningful debate
and informed discussions on the options for
care so that all those involved can contribute.
Caring for children with complex and
continuing health needs is an area of nursing
care that requires a unique and specific mix of
medical and technical skills and knowledge,
organisational, interpersonal and negotiation
skills and the ability to care for children and
their families in diverse circumstances NS

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