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RESEARCH

JCHC
Caring for children with complex Journal of Child Health Care
Copyright © 2005
needs: staff education and SAGE Publications
London, Thousand Oaks, CA
and New Delhi
training Vol 9(1) 72–86
DOI: 10.1177/1367493505050506

JAQUI HEWITT-TAYLOR, PhD, BA(Hons), RGN

RSCN
Institute of Health and Community Studies, Bournemouth University, UK

Abstract
Children who live with medical conditions that were previously considered
incompatible with long term survival are often highly dependent on inter-
ventions and equipment which would traditionally have required hospital-
ization. However, it is generally accepted that their social, psychological,
emotional and developmental needs are best met at home. One of the
many factors that can impede these children from being discharged from
hospital is the lack of availability of staff who can provide care and support
for them and their families. Increasing the number of staff who are able to
provide such support might, therefore, assist in providing for their care
needs. This article reports on a study of the perceived education and training
needs of staff who care for children with complex needs and their
families.
Keywords children with complex needs community care education
● ●

and training

Introduction
Developments in the fields of medicine and technology mean that infants
and young children are now able to survive with increasingly complex medical
problems. Jardine et al. (1999) identified 141 children in England who required
long term ventilation, and it is likely that the number of children who survive by
long term dependence on medical interventions and technology will continue to
rise. The National Health Service Executive (1997), the National Service Frame-
work for Paediatric Intensive Care (Department of Health, 1998) and the

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National Service Framework for Children, Young People and Maternity Services
(Department of Health, 2004) have identified the importance of meeting the
needs of this population.
Wherever possible, children should be cared for within their family unit in
the community (National Health Service Executive, 1997). However, for chil-
dren who require ongoing medical related interventions, such as assisted ventila-
tion, tracheostomy care, oxygen administration, enteral and parenteral feeding,
the availability of suitable home care is often a major obstacle to their discharge
from hospital (National Health Service Executive, 1997). Education and training
which increases the number of staff who are able to meet this client groups’ care
needs could, therefore, assist in achieving the aim of providing appropriate home
care for such children.
This article reports on a survey regarding education and training for staff
who care for children with complex needs outside the hospital environment.

Study background
There are an increasing number of children whose lives can be meaningfully
sustained by dependence on medical interventions and related technology.
This includes children with tracheostomies, those who require long term assisted
ventilation, oxygen therapy, assisted enteral or parenteral feeding, and the
administration of intravenous drugs. The type of care that these children need
would once have been considered to necessitate hospital-based care and, in many
cases, in an intensive care unit (Dougherty et al., 1995; Kirk and Glendinning,
2002; Lumeng et al., 1999). However, the primary focus of intensive care environ-
ments is interventions aimed at preserving life and stabilizing children during
acute illnesses. Children who require long term ventilation but are otherwise
medically stable are often exposed to inappropriate types and levels of stimulation
in intensive care units and do not have the opportunity for normal developmental
experiences (Boosfeld and O’Toole, 2000). Even outside the intensive care envi-
ronment, the acute hospital setting is an inappropriate environment for children
to grow up in educationally, psychologically and socially (Neufeld et al., 2001).
The increase in the number of children requiring complex technological or
medical interventions has been accompanied by a recognition that, wherever
possible, children should be cared for at home, because their psychological,
developmental and social needs are generally better met in this environment
(National Health Service Executive, 1997). Balling and McCubbin (2001) and
Neufeld et al. (2001) clarify that this includes chronically ill children and their
families. Appierto et al. (2002) suggest that when children who are dependent on
medical technology are cared for at home their clinical as well as psychosocial
and developmental outcomes are improved.
As well as children with complex needs having improved outcomes when

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JOURNAL OF CHILD HEALTH CARE 9(1)

they are cared for at home, it has been suggested that caring for them in an acute
hospital setting is an inappropriate use of resources (Boosfeld and O’Toole,
2000). This includes paediatric high dependency or intensive care beds
(Glendinning and Kirk, 2000) and the overall financial cost of hospital-based
care. However, equipment, consumables and nursing support in the child’s
home have high initial set up and ongoing maintenance costs (Boosfeld and
O’Toole, 2000; Glendinning and Kirk, 2000).
There are an increasing number of children whose need for long term care
involves medical and technological interventions that ideally could be provided
in the community (Department of Health, 2004; Dougherty et al., 1995; Kirk and
Glendinning, 2002). However, despite the advantages of home care for such
children, Noyes (2002) found that almost all young people who require long
term assisted ventilation spend significant periods of time in hospital even when
they no longer want or have a medical need to be there. A variety of factors
mitigate against children with complex needs being discharged from hospital.
These include the attitudes of professionals, management issues within the health
service, lack of collaboration between services (Noyes, 2002), social issues for
individual families (Jardine et al., 1999; Noyes, 2002) staffing and funding issues
(Jardine et al., 1999). The availability of healthcare staff who can provide care for
these children and their families has not kept pace with the developing popula-
tion, and is a factor that makes discharging them from hospital problematic
(Jardine et al., 1999).
Given these issues, it is not surprising that when children requiring ongoing
medical or technological interventions are cared for in their home environment,
their parents generally provide the type of care that would usually be the domain
of professionals. Kirk (2001) records that a lack of viable alternatives often means
that parents feel they have no option but to take on such roles. In these circum-
stances, parents not only have to learn medical and technological aspects of care
but also to make many difficult and profound adjustments to their everyday life
(Aday and Wegener, 1998; Department of Health, 2004). This includes managing
daily life with technology, having to cope with a high level of unpredictability and
maintaining other family functions within these constraints (O’Brien, 2001).
Although care at home is the most cost effective option for the NHS (Appierto et
al., 2002), it might shift the financial burden to the family unit (O’Brien and
Wegener, 2002).
Supporting families who care for children with complex medical needs is not
straightforward. One option is the provision of full time or sessional nursing care
in the family’s home. Whereas this has advantages, it also intrudes on a family
whose lifestyle is already disrupted (Aday and Wegener, 1998; Baumgardner and
Burtea, 1998; Valkinier et al., 2002). In such situations, negotiation between
healthcare providers and the family is a key element of providing support (Graves
and Hayes, 1996). This includes negotiation of roles and responsibilities related to
medical procedures and also non-medical aspects of care, such as child rearing

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expectations, and relationships between carers and the family (O’Brien and
Wegener, 2002). The need for parents and healthcare professionals to negotiate
roles is not peculiar to caring for children with complex needs, but is an integral
part of family centred care in hospital environments (Darbyshire, 1995).
However, in the home environment and in situations where parents have become
expert carers, the nature of the relationships and negotiations is very different
from those encountered in acute hospital settings (Balling and McCubbin, 2001).
In hospital, the power relationship is tipped in favour of healthcare staff, whereas
the child’s parents are visitors in an unfamiliar environment. This situation is
reversed where the healthcare worker is the visitor in the family home (Taylor,
2000). The power equation in relation to knowledge is also frequently reversed.
Parents of children with complex needs are often far more knowledgeable about
the underlying disease process and the practicalities of their child’s care, including
technical and medical procedures, than healthcare professionals and, in many
cases, teach professionals about these (Glendinning and Kirk, 2000).
Despite parents being experts in their own child’s care, the provision of
24-hour care for children with complex needs is demanding and, in addition to
finding ways to provide day-to-day support, respite care is an important resource
for families (Department of Health, 2004; Neufeld et al., 2001; Olsen and Maslin-
Prothero, 2001). However, Neufeld et al. (2001) and Robinson et al. (2001) iden-
tified that finding suitable respite care services is problematic for many families.
Organizing respite care is often time consuming and might take months to bring
into effect (Olsen and Maslin-Prothero, 2001). Jardine et al. (1999) found that
only 17 percent of families providing care for a child requiring assisted ventila-
tion had respite care in place.
It is clear that children with complex needs can be unnecessarily detained in
hospital because of a lack of community support staff and difficult accesses to
adequate respite care services. Increasing the number of staff who can assist in
providing care for such families is only one part of meeting their needs. However,
this could assist in improving their situation. Formal education and training for
healthcare staff that provide for the needs of children who require complex care
has not kept pace with the developing population. Prewlett (2000) suggests
that education and training for registered nurses and other support staff in this
situation is a positive step. Nonetheless, it is important to identify the need,
as well as the initial and long term viability, of the provision of education and
training programmes before investing in course development.
As an initial move towards developing education and training provision for
such staff, a pilot study was carried out which sought to identify:
● whether education and training for those providing care for children with
complex needs and their families is seen as worthwhile;
● the likely purchasers of such education and training; and
● the subjects which it would be useful to include.

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The goal of the study was to begin the process of developing education and
training for staff engaged in caring for children with complex needs. The process
of course design included considering the methods or modes of course delivery,
but generating information on purchasers’ views of teaching and learning
methods was not a part of this study. However, this was something which
merited consideration in developing the responses into a course proposal and
will therefore be considered in the discussion of the findings.

The study
Design
A quantitative survey was conducted as this study was an initial fact-finding
mission from which ongoing enquiry would develop (Malim and Birch, 1997;
Wellington, 1996). There is relatively little existing information on this subject
and the design was descriptive as no manipulation of variables was involved and
no attempt was being made to establish a cause for the responses (Burns and
Grove, 1993; Le May, 2001). The study aimed to provide a broad description of
the perceived education and training needs of those who care for children with
complex needs outside the hospital setting. Quantitative methods of data collec-
tion and analysis were selected as the aim was to use numerical measures to
determine the relative importance of each subject area (Wellington, 1996).

Population
The survey aimed to gain an overview of service providers’ views on staff educa-
tion needs. The heads of care from the following areas were surveyed:
● All children’s hospices in the UK as many hospices provide care for children
with life-limiting conditions and often provide respite care for those who are
dependant on technology (Robinson and Jackson, 1999).
● Organizations on the national list of those providing respite care.
● Children’s community nursing teams within the local primary care trusts.
(Although national variations might exist in the views of community
children’s nursing teams, local purchasing of education meant that it was
deemed inappropriate to seek the views outside the immediate confedera-
tion trusts.)

Data collection methods

A questionnaire was selected as the data collection method. These are commonly
used in survey research to gather basic or baseline data across a wide geographi-
cal region (Le May, 2001). Questionnaires are also economically viable, although

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they have the problems of potentially low response rate and inaccurate responses
(Le May, 2001). However, this was the most appropriate method in this instance.
The questionnaire was designed to gain information about:
● the organizations which provide care and support for children with complex
needs;
● which staff provide this care; and
● the subjects which could usefully be addressed in education and training
programmes.
The survey included the needs of registered nurses and care staff who are not
registered nurses, because Robinson and Jackson (1999) identified that this is the
mix who provide care for these children and their families outside the hospital
environment. Managers were asked to identify whether or not their organiza-
tions provided for children with complex care needs such as assisted ventilation,
oxygen therapy, assisted enteral or parenteral feeding, and the administration of
intravenous drugs and which staff provided care for this client group.
The questionnaire was intended to identify what subjects would be useful
for inclusion in staff education and training programmes. It provided a list of
suggested subjects on which respondents were invited to comment. The list was
intended to be a baseline from which ideas and suggestions could be developed.
The diseases or disorders and interventions included were derived from the
literature (Appierto et al., 2002; Holden, 2001; Jardine et al., 1999; Sasaki et al.,
2001). Other suggested subject areas arose from the literature review and discus-
sions with relevant parties. The questionnaire was piloted and 35 questionnaires
subsequently distributed, with an envelope with return postage provided. Data
were coded with numbers rather than names of organizations to ensure con-
fidentiality and anonymity and were analysed using percentage measures. No
further statistical analysis was attempted as the study aimed to give an initial
overview rather than to seek statistical significance.

Results
Of the 35 questionnaires 21 were returned (60%). All those returning question-
naires indicated that they provided care for children with complex medical
or technological needs. This included oxygen therapy, care of children with
tracheostomies, Continuous Positive Airway Pressure (CPAP), Bilevel Positive
Airway Pressure (BiPAP), assisted ventilation using positive and negative pres-
sure devices, intravenous drug administration including the use of central lines,
administration of total parenteral nutrition, care of gastrostomies, nasogastric
tubes, chemotherapy and dialysis. Most indicated that, whereas the precise
care needs of the children and their families at any one time varied, the potential
existed for all these aspects of care to be required at one time or another.

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Table 1: Managers’ views on subject areas for inclusion in education/

training programmes for registered nurses

Number of respondents who

Subject considered subject relevant (n = 21)

Basic life support 21 (100%)

Communicating 21 (100%)
CPAP and BiPAP 21 (100%)
Effects of chronic illness on the child
and family 21 (100%)
Feeding 21 (100%)
Legal and ethical issues 21 (100%)
Negotiating care 21 (100%)
Oxygen administration 21 (100%)
Pain management 21 (100%)
Principles of assisted ventilation 21 (100%)
Tracheostomy care 21 (100%)
Chronic respiratory disorders 20 (95.2%)
Care of the child with limited mobility 20 (95.2%)
Nutrition 20 (95.2%)
Pharmacology 20 (95.2%)
Assessing children with complex needs 19 (90.5%)
Chronic neurological disorders 19 (90.5%)
Educational needs 19 (90.5%)
Fluid and electrolyte balance 19 (90.4%)
Monitoring 19 (90.5%)
Congenital heart disease 18 (85.7%)
Negative pressure ventilation 18 (85.7%)
Homeostasis 17 (81%)

All the respondents indicated that children with complex needs and their
families were cared for by a combination of registered nurses and staff who were
not registered nurses. One manager commented that staff other than registered
nurses would inevitably be used to provide care for these children as it was
her experience that not enough registered nurses want to do this type of work
long term.
The managers who returned the questionnaire indicated which subjects they
considered appropriate for inclusion in staff education and training programmes
for:

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Table 2: Subject areas for inclusion in education/training programmes for

staff who are not registered nurses

Number of respondents who

Subject considered subject relevant (n = 21)

Care of the child with limited mobility 21 (100%)

Communicating 21 (100%)
Basic life support 20 (95.2%)
Chronic respiratory disorders 20 (95.2%)
Educational needs 20 (95.2%)
Chronic neurological disorders 19 (90.5%)
Effects of chronic illness on the child and family 19 (90.5%)
Feeding 19 (90.5%)
Legal and ethical issues 19 (90.5%)
Nutrition 19 (90.5%)
Tracheostomy care 19 (90.5%)
Oxygen administration 18 (85.7%)
Principles of assisted ventilation 17 (81%)
Monitoring 16 (76.2%)
Congenital heart disease 15 (71.4%)
CPAP and BiPAP 15 (71.4%)
Pain management 14 (66.7%)
Assessing children with complex needs 12 (57.1%)
Fluid and electrolyte balance 12 (57.1%)
Negotiating care 12 (57.1%)
Homeostasis 9 (42.9%)
Negative pressure ventilation 9 (42.9%)
Pharmacology 6 (28.6%)

● registered nurses;
● staff who provide care but are not registered nurses; and
● neither staff group.
The total number of managers who considered each topic suitable for
registered nurses and staff who are not registered nurses was calculated as seen in
Tables 1 and 2.
Additional areas for inclusion were identified by 20 of the 21 managers who
returned the questionnaires, all of which pertained to what could be broadly
termed psychosocial or organizational rather than technical or medical aspects of
care. These generally fell within the broad themes which had been listed, but

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Table 3: Additional areas suggested for inclusion in education/training

programmes

Medical/technical aspects of care Accountability (n = 2)

should not overshadow psychosocial
Caring for adolescents with life-
elements of care (n = 18)
limiting conditions (n = 2)
Boundaries for professionals and
Equal opportunities, and social
families (n = 6)
inclusion (n = 2)
Family centred care including family
Spiritual care, cultural and religious
dynamics and stressors and the
diversity (n = 2)
reality of everyday life with a child
with complex needs (n = 6) Alternative therapies (n = 1)

Death, loss and bereavement care Child protection (n = 1)

(n = 5)
Needs of the siblings (n = 5)
Staff support and caring for carers
(n = 5)
Community involvement and other
service provision (n = 4)
Normalisation and holistic care (n = 4)
Play (n = 4)
Working within the multidisciplinary
team (n = 4)
Palliative care (n = 3)
Accessing appropriate resources,
forming bids for funding (for trained
staff) (n = 2)
Consent (n = 1)
Health promotion (n = 1)
Listening skills (n = 1)
Managing/preventing challenging
behaviour (n = 1)
Moving and handling (n = 1)
Osteoporosis prevention and
management (n = 1)
Psychosocial problems (n = 1)
(emphasizing problems, as opposed to
psychosocial issues being given more
emphasis)
Sexuality (n = 1)
Statutory obligations (n = 1)

indicated that many managers felt that more specific or in-depth input on the
issues was necessary. These areas are listed in Table 3. In addition, 18 out of
the 21 managers (85.7%) made comments that stated or implied that medical or
technical elements of care should not be allowed to dominate any education
provision. For example, one commented that, although the technological aspects
of care can seem overwhelming, once these are mastered the day-to-day psycho-
social issues involved in provision of care and support are more problematic and
taxing for staff and families.

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Discussion
The overall response rate to the questionnaire was 60 percent. It is difficult to
gauge whether this is because of a lack of interest in the subject, problems with
the questionnaire, the perception that such education and training is unneces-
sary, or whether it reflects the difficulty in accurately accessing the population
who provide such care (Wellington, 1996). It is possible that a number of those
to whom the questionnaire was sent do not provide care for children in the
identified client group. Although the questionnaire gave the option to indicate
that this group of children were not cared for it is less likely that this would have
resulted in questionnaire return.
The response rate could also have been affected by the fact that heads of care,
rather than those directly providing the majority of care, were surveyed. Heads of
care were selected as they are those most likely to purchase education and the
most accessible for an initial survey. However, this may have had an effect on the
response rate and the extent to which the suggestions reflect the needs of those
who provide direct care.
Three broad areas of practice were included in the survey (children’s
hospices, organizations on the national list of those providing respite care, and
children’s community nursing teams within the local primary care trusts). No
significant difference was identified between these areas in relation to the subjects
which were seen as most relevant. This might have been because of the small
numbers involved in the study, because these broad categories are not homoge-
nous, because a variety of organizations provide for children and families with
similar care needs, or because the questionnaire was not sufficiently sophisticated
to detect this. This is something which might become clearer in follow-up
enquiry and evaluations.
No questions were posed regarding method of course delivery; however, five
managers added that consideration would have to be given to the need to provide
this type of education and training across wide geographical areas. Another
manager suggested that the provision of adequate support for staff who would be
undertaking education or training would need to be considered. The relatively
small number of staff involved in caring for children with this type of need
in each geographical region reflects the problems encountered in paediatric
intensive care education in relation to provision of courses for small numbers of
students (Department of Health, 1997). Distance learning might, therefore, be a
useful method of providing course materials for this group (Hewitt-Taylor,
1998). However, as highlighted by this manager’s concerns, if this is the chosen
medium, adequate support from peers and tutors must also be available (Hewitt-
Taylor, 2003). This study did not specifically seek the views of managers on using
particular teaching and learning methods, but this merits further investigation
and ongoing evaluation.

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Subjects for inclusion

Caring for children with complex needs includes meeting their biological,
psychological, developmental and social needs and thus any preparation for their
care should involve all these aspects (Balling and McCubbin, 2001; Neufeld et al.,
2001). The questionnaire included more questions that focused on medical or
technical aspects of care, but the comments added by the managers indicated that
while these aspects were important, they should not be allowed to dominate. All
the aspects of care listed which might be broadly termed psychosocial care were
recommended for inclusion by 100 percent of managers, whereas some aspects of
medical or technical care were given relatively low weighting. This can be likened
to Glendinning and Kirk’s (2000) recognition of the tendency to emphasize
technical skills when preparing parents for discharge, and their suggestion that
parents found that the psychological aspects of caring for their children were
overlooked.
As a part of the effects of caring for a child with complex needs, three
managers emphasized the importance of enabling staff to appreciate something
of the reality of everyday life with a child who is technology dependent. Four
others felt that the needs of the siblings of such children should be specifically
addressed. There was a suggestion that staff should be helped to see the child’s
care holistically and to normalize their environment. These additional sugges-
tions reflect Aday and Wegener’s (1998) and O’Brien’s (2001) view that the prac-
ticalities of everyday life with a child who is dependent on technology is difficult
to manage and impacts on all family members. Some respondents made
additional comments on the need to include negotiation of role boundaries. This
reflects the identified need for staff to be able to negotiate the care of such
children with their families (Balling and McCubbin, 2001; Graves and Hayes,
1996; O’Brien and Wegener, 2002). As this was identified as necessary for
registered nurses as well as staff who are not registered nurses, the needs of
families in this situation are clearly seen as specific and distinct from the more
general negotiation of care which is an intrinsic part of paediatric nursing, in
terms of the amount of negotiation, the basis for negotiation with parents who
are expert carers, and the nature of negotiation in the home rather than hospital
environment (Balling and McCubbin, 2001; Kirk and Glendinning, 2002). From
a course design perspective, this sort of problem-based learning, case study or
scenario-based learning might be useful to encourage course participants to view
the child and family as a whole and to consider how their varied and complex
needs interface with each other (Matheson, 2003).
Although many of those returning the questionnaire stated the need to
ensure that technical and medical aspects of care do not overshadow the
psychosocial elements, these are also clearly important (Watson et al., 2002).
Responses indicated that education and training in underpinning the disease
processes, which lead to complex care needs and interventions, were generally

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seen as relevant, although some were more universally identified as important

(see Tables 1 and 2). No additional aspects of medical or technical care were
added. However, this is likely to be because the survey itself covered these com-
prehensively.

Who should be taught?

Many of the subjects suggested were seen as suitable for both trained and
untrained staff, with the proviso that the level and application would need to be
specific to each group. The subjects are listed in rank order in Tables 1 and 2.

Limitations of the study

This study was an initial survey, which aimed to identify broad categories in
which education and training might be valuable. As such, it has limitations and
provides significant scope for further enquiry.
The questionnaire had a medical/technical bias. A follow-up study including
all the areas identified by managers would illuminate the extent to which more
detail of the psychosocial aspects of care should be included. However, it could
be more useful to adopt a less reductionist approach, which allows more in-
depth exploration of the specific issues involved. In many respects technical/
medical aspects of care are easy to identify and quantify for this type of survey.
Although a quantitative survey was a useful approach to identify a range of ideas
nationally, it might be more appropriate to explore the perceived needs of staff in
relation to psychosocial input using qualitative enquiry, so that precise concerns
and nuances in meaning which are not necessarily so easy to neatly define can be
explored.
There is also the potential for the target group (care managers) to have given
a focus which is not that of those directly involved in care activities.
A follow-up enquiry is planned to address these issues.

Conclusion
The survey confirmed that children with complex medical and technical care
needs are cared for by a variety of individuals and organizations including
hospices, home care organizations, and community children’s nursing teams.
This care is provided by a combination of registered nurses and staff who are not
registered nurses.
This survey has provided an insight for course design, from which proposed
content can be developed, discussed and evaluated in more depth, allowing a
combination of these two limitations to be addressed. It has clarified the princi-
pal areas that nurse managers consider useful for inclusion in a course for those
caring for children with complex needs and their families and that care should be

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taken to prevent an unequal balance between medical/technical and psychosocial

aspects of care. Given the overall number of respondents and nature of the study
the findings are not generalizable to a complete picture of the needs of staff.
However, what emerged were broad areas in which registered nurses and other
care staff might benefit from input. There were many subject areas which were
seen as relevant for registered nurses and staff without nursing qualifications.
However, the focus and application needs to be different in many cases.
Whereas adequate support is needed for those accessing such education, the
numbers within each geographical region is likely to be small and distance
learning is, therefore, an option which merits consideration (Hewitt-Taylor,
1998). However, as identified by Hewitt-Taylor (2003), there is a need for any
distance-learning materials to be accompanied by appropriate levels of equip-
ment, student support and facilitation. In addition, given the need to promote
holistic care and normalization, there is a possibility that problem-based or
scenario-based learning will be useful approach (Matheson, 2003). The methods
which are most useful for delivering such education and training did not form a
part of this study, but merit ongoing consideration and evaluation.

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JAQUI HEWITT-TAYLOR is a Practice Development Fellow for Children with

Complex and Continuing Health Needs at Bournemouth University. Current
interests and research include education provision for staff that care for children
with complex needs and the development and evaluation of distance-learning
materials for post-registration education.

Correspondence to:
Jaqui Hewitt-Taylor, Institute of Health and Community Studies,
Bournemouth University, Royal London House, Christchurch Road,
Bournemouth, Dorset, BH1 3LT.
[email: jcdeht@yahoo.co.uk]

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