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International Journal of Palliative Nursing 2013, Vol 19, No 11 541
Abstract
The anticipated death of a child or young person is a relatively rare
occurrence in the Western world. Many families receive support from
childrens health-care services until the late stages of palliation, with
adult community nurses being involved in just an occasional end-of-life
care episode in the home during their entire career. This creates
challenges in nurses experiential reflection, development of
knowledge and skills, and building of nursefamily relationships.
Individual semi-structured interviews were conducted with 10 adult
community nurses from a rural part of Scotland to explore their
experiences of providing palliative care to children. The material was
analysed using a qualitative phenomenological thematic approach. Four
key themes emerged: emotional preparedness, navigating the
professional road, becoming part of the family, and its everybodys
business. Significant issues were highlighted in relation to nurses
coping, with implications for practice. Recommendations are made for
further research into rural contextual dilemmas.
Key words: Children l Young people l Palliative care l Qualitative
research l Community l Adult nurses
T
he death of a child or young person
(CYP) is a relatively rare occurrence in
the Western world, and so there is often a
need to rationalise the highly emotional and
subjective experiences of these events (Maunder,
2006). Nurses caring for a CYP at the end of
their life may have exaggerated feelings of lack
of competence, helplessness, and fear, and may
undertake a personal search for spirituality
(Papadatou et al, 2002).
Palliative care for CYP is increasingly
recognised as requiring specialist input (ACT,
2009). Simply transferring adult models of care
does not take into account the differing and
complex developmental, environmental, and
psychological characteristics that inform each
situation (Swinney et al, 2007). Nurses with
considerable knowledge, skills, and experience
in CYP palliative care are often few in number,
with gaps between service development and
educational provision (Price and McNeilly,
2006). This is important because feelings of
inadequacy, emotional distancing, and burnout
have been reported as being more prevalent
among professionals who are insuffciently pre-
pared, educated, or supported to carry out their
role (Contro et al, 2004).
Nurses have frequent, poignant, and intimate
relationships with families during the delivery of
end-of-life care (EoLC) for a CYP (Maunder,
2006). Many families will have received support
from childrens health-care services until the later
stages of palliation, at which point the intensive
nursing input required in the home often cannot
be provided by the widely dispersed CYP nursing
teams. Adult community nurses are likely to be
involved in providing just a few episodes of palli-
ative care to this age group during their working
lifetimes. This creates challenges in their experi-
ential reflection of nursing dying CYP, their
development of relevant knowledge and skills,
their building of nursefamily relationships, and
in the amount and type of support they require
(Neilson et al, 2011).
In the past, research relating to this specialised
area of nursing has focused on childrens teams
working in acute or community environments
(Papadatou et al, 2002; Rashotte, 2005;
McCloskey and Taggart, 2010) or on the strategic
development of childrens palliative care services
(Beringer et al, 2007; Bradford et al, 2012).
Literature from Canada and Australia identifed
challenges in delivering care to adult populations
in very rural contexts (Wilkes and Beale, 2001;
Kenny et al, 2007; Pesut et al, 2012). However,
there appears to be a dearth of material that
acknowledges the practical, emotional, and spirit-
ual experiences of adult-registered nurses called on
to deliver EoLC to CYP in their homes.
Aim
Through the narration of lived experiences, this
research aimed to highlight some of the
challenges perceived by rural adult community
nurses when delivering palliative care to CYP
Research
Lived experiences of adult community
nurses delivering palliative care to
children and young people in rural areas
Fiona Cathryn Reid
Fiona Cathryn Reid is
Paediatric Oncology/
Haematology Nurse
Specialist for NHS
Highland, Scotland
Email:
fona.reid7@nhs.net
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and their families in the home. It was hoped that
some changes to practice might be identifed that
could enable these nurses to cope more
confidently with these stressful and unique
events, ultimately enhancing service delivery.
Methodology
A qualitative phenomenological design was
thought most appropriate to explore these indi-
vidual, diverse, and subjective lived experiences.
This method is valuable in leading to deeper
understanding of a poorly understood area,
particularly where complex, interactive feelings
and practices are involved (Barbour, 2000).

Setting
The study was set in an area covering 41% of the
land mass of Scotland (approximately the size of
Belgium), including around 35 inhabited islands.
The population of this area is around 310 000
(5.9% of Scotlands total), of which 40 000 are
aged 015 years, giving a population density of
around 8.7/km
2
(UK average is 258.9/km
2
). There
are less than 20 miles of dual carriageway, with
families travelling 27 hours in a single journey
to access the nearest childrens hospital.
Sample
The managers of adult community nursing teams
from one health-care provider in the region were
requested to invite all of their nursing staff to
participate in the study, allowing non-probabilistic
recruitment. Six district nurses (DNs) and four
adult community palliative care clinical nurse
specialists (CNSs) took part. The nurses had been
qualified for between 15 and 42 years (mean
29.5 years). Eight of the ten had community quali-
fcations, four had palliative care qualifcations,
and just two (DNs 2 and 3) had childrens
nursing qualifcations. Three reported on their
involvement with two CYP and the remaining
seven on the care of a single CYP each. The
participants median distances from the district
general hospital employing specialist childrens
nurses was around 65 miles, illustrating the
rurality of the practising locations.
Ethical considerations
Ethical approval for the study was given by the
North of Scotland NHS Research Ethics
Committee, NHS Highland Research and
Development, and the University of Dundee Ethics
Committee. Informed consent was obtained from
participants and confdentiality was assured.
Data collection
Individual, digitally recorded interviews were
conducted by the author. These were semi-
structured, with open-ended core questions
providing a fexible agenda.
Data analysis
Latent, inductive content analysis was used,
whereby the transcribed and anonymised data was
annotated to record participants audible cues,
such as sighs, tears, or changes in tone, adding
weight to the analytical process. Significant
statements were extrapolated and meanings
formulated through coding and cross-coding of
the data generated. These were distilled into
related and recurrent emerging topics, resulting
in a thematic approach (Elo and Kyngs, 2008).
Findings
Four interrelated and overlapping themes
emerged from the analysis, illustrating the
complexity of delivering palliative care to CYP.
Emotional preparedness
Most of the nurses described being under-
prepared to deal with the emotional impact of
the death of a CYP. Rather than the younger
participants or those with least experience, it
appeared to be those without a child nursing qual-
ification who struggled to reconcile themselves
with the concept of child death.
young people affect you mightily more than
somebody who has lived a full life it was just
the unjustness of why somebody could be
plucked away. (DN4)
I did find it hard going because she was
younger I kept thinking that a young girl
should [not] have to go its not fair, and I did
struggle. (DN6)
Box 1. Themes and subthemes
Emotional preparedness
l Emotional burden
l Attitude to child death
l Personal beliefs
l Self-effcacy
l Knowledge and experience
l Qualifcations
Navigating the professional road
l Referral and discharge planning
l Timing of introduction to family
l Roles
l Interfacing with childrens health-care
structures
Becoming part of the family
l Extended family members
l Parental behaviours
l Talking with children
l Rewards
Its everybodys business
l Delivering a 24-hour service
l Isolation and rurality
l Community expectations
l Personal support
l Confdentiality and anonymity
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The nurses clearly, and sometimes tearfully,
articulated the personal impact of the episode.
whole emotional rollercoaster that the
parents were on you were riding that your-
self ... [it was] emotionally wearying. (CNS4)
We were bewildered and emotionally upset
[It caused me to] question my faith ... is there
really a God up there? (DN5)
You yourself are quite overwhelmed by it, its
got a lot of impact, there was such a lump in
my throat. (DN4)
what do you say to a parent whose child is
dying? Its very diffcult if youre all choked up
yourself. (CNS2)
None of the nurses reported any palliative care
education being part of their pre-registration
programmes, 1639 years prior to the interview,
or of any subsequent training. Perceptions of
professional expertise and self-confdence clearly
differed between those who were registered as
childrens nurses and those who were not.
I felt I was foundering ... youre fying by the
seat of your pants ... the main hindering factor
was the lack of knowledge. (CNS4)
... I think there is a gap in knowledge, it was a
very steep learning curve. (DN4)
Navigating the professional road
Many of the nurses were clear in their comments
relating to discharge planning, with over two-
thirds feeling it did not exist or that it occurred
far too late, was too rapid, and was ill-planned.
The meeting when one child was discharged
from hospital was fne, but then to fnd that the
helicopter had already landed ... it felt like ... its
over to you, theyve done all their high-falluting
stuff, and youre left high and dry. (DN2)
Over three-quarters of the DNs criticised their
late introduction to the families, stressing the
importance of gaining trust and respect from the
family. Comprehending family dynamics was
recognised as important to individually tailoring
care for each CYP.
We could have been of more use earlier on
[instead of] coming in late in the day pad-
dling fast to build a relationship at a critical
stage. (DN3)
All of the CYP had input from large numbers
of teams and professionals from both the district
general hospital and tertiary hospitals.
Understanding this structure of childrens services
created issues for the participants, with identify-
ing colleagues and setting up communication
pathways a challenge for the majority.
This chap belonged to everybody ... the diabetic
department oncology rheumatology
the ownership was huge I couldnt get one
direct answer I had to get in touch with all
these different people. (DN4)
The input of specialist childrens nurses and
paediatricians appeared to confuse the nurses
perceptions of their roles, boundaries, and
responsibilities. As a local team, they would
normally have orchestrated and coordinated the
care for adult patients.
Becoming part of the family
Over half of the participants found working in
balance with the extended family, parents, and
the CYP unusual. All described some challenges
in maintaining professional boundaries, with some
portraying themselves as a pseudo-member of
the family.
a lot of relatives involved in the families
all looking to you for an answer it is more
stressful. (CNS1)
They were coming from diverse ends of the
spectrum both parents looked at it from a
different perspective totally. (DN2)
The nurses all identified the importance of
skilled and sensitive communication with the
family. They reported feeling anxious that the
CYP or their siblings might not be able to cope
with the information and feeling neglectful in not
always directing the conversation to the patient.
I felt maybe perhaps was I missing something
in not trying to engage the actual child
themselves (CNS1)
Over a quarter of the participants acknowledged
the apparent resilience of children.
Theyve got a hunger for knowledge kids
will ask that obvious question that nobody
wants to answer they know a lot more than
we give them credit [for]. (DN1)
The nurses with child nursing qualifications
Nurses with
considerable
knowledge,
skills, and
experience in
children and
young peoples
palliative care
are often few
in number ...
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appeared to demonstrate greater confdence in
adapting their communication styles to the age
and maturity of the CYP.
the child needs to be heard unintentionally,
a lot of practitioners address the carers. (DN3)
Despite these fears, all of the nurses felt it was
rewarding to deliver this care at such a private,
personal, and devastating time.
It was a very privileged place to be. (CNS4)
The absolute uniqueness of each individual
you dont see it so clearly in adults. (DN4)
It was a positive experience, it was teamwork
I feel personally enriched by having dealt
with the situation. (CNS4)
Its everybodys business
Resources for providing 24-hour EoLC, with the
ability to rest and relinquish practical and
emotional responsibilities, were limited as very
small local teams and caseloads were spread over
wide geographical areas.
feeling unable to give the support that you
wanted it went on and on and on I felt, I
dont know if I can keep this momentum up
(CNS4)
they [DNs] didnt really have anybody else
they could have drawn on I could see these
nurses getting really tired. (CNS2)
Working in tightly-knit rural communities
often meant the nurses had prior relationships
with families, with just under half being related
to, friends with, or having children in the same
school as the family concerned. They highlighted
the risks of prejudging the family, potential
breaches of confidentiality, lack of nursing
anonymity, and the pressure of being a supportive
pillar for the entire community.
Its not just the one family thats involved
my kids would come home from school telling
me about [the ill child]. (DN1)
Everybody knew what was going on theyd
see us going in and out everybody knows
everybodys business. (DN6)
The whole village reverberated every single
person is affected by that young person.
(DN4)
Both groups remarked on the restricted
opportunities for face-to-face support from others
as a consequence of these rural issues and the
geographical isolation.
My other colleague lived near [place 50 miles
away] the only way we could do this was to
talk on the phone thats difficult when
someones crying. (CNS2)
Discussion
Irrespective of context or the participants level
of experience, the death of a CYP elicited feelings
of grief, fear, and emotional confict. Some of the
nurses still appeared to be trying to come to
terms with their emotions in relation to the
childs death at the interview. Attitudes to the event
seemed to directly correlate with the supposed
degree of unjustness of the death, the age of the
child, whether EoLC was more protracted, and
whether the nurse held a prior relationship with
the family. These personal beliefs also appeared
to be heavily infuenced by whether the partici-
pant had a child nursing qualification. These
findings of stress, suffering, and paying an
emotional price were also reported by Rashotte
(2005) and McCloskey and Taggart (2010),
although the impact on nurses emotional well-
being, exaggerated though working in close and
familiar communities, is under-recorded.
Western society is generally unprepared for the
death of a child (Maunder, 2006), with a lack of
discussion around this topic in the UK and other
countries. Mourning losses is a natural activity,
and the needs of nurses are no different to those
of the general population. Displays of emotions
and attitudes to death are linked to background,
experience, culture, faith, and socio-cultural
standards (Papadatou et al, 2002; Liben et al,
2008). Institutional and vocational norms may
also demand that nurses behave in a manner
commensurate with their role (Maunder, 2006),
with exhibition of sentiment being perceived as a
s i gn of emot i onal over- i nvol vement .
Reconciliation with the concept of child death
may be enhanced through the use of comparative
stories about several care episodes (Schreiner
et al, 2009). This was not an option available to
those adult nurses interviewed, who had only
been involved in an occasional event. Team
debriefing using storytelling with childrens
nurses could encourage validation of subjective
emotions, and should be supported with the use
of reflective frameworks (Quinn and Bailey,
2011) in clinical supervision sessions.
Despite being expert generalists who highlighted
their ability to translate most practical skills,
Adult
community
nurses are
likely to be
involved in
providing just
a few episodes
of palliative
care to this age
group during
their working
lifetimes.
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these nurses also reported a pressure to rapidly
learn new skills, often using any knowledge gained
retrospectively. This resulted in sentiments of power-
lessness and an increased onus on responsibility,
accountability, and culpability. Education in
palliative care is said to influence belief in
personal skills, self-effcacy, and advocacy behav-
iours (Thacker, 2008). It seems that any sense
of failure to deliver quality care adds to the
impotence and occupational and moral distress
for nurses, exacerbating their grief.
Clinicians delivering EoLC to CYP need
endorsement, guidance, and a level of expert
knowledge to meet the unique needs of children
and families, but many are ill-prepared for this
type of role (Davies et al, 2008; Liben et al,
2008). The costs and practicalities of delivering
childrens palliative care training to very rural
nurses, who may only be involved in a single
episode of care, are challenging and as-yet
unresolved. However, the principles of palliative
care are now mandatory to nurses core educa-
tion (Nursing and Midwifery Council, 2010).
The introduction of key issues specifcally related
to children into postgraduate adult palliative care
programmes, and provision of substantial and
sustained support from specialist childrens
nurses, could enhance the skills of adult nurses
participating in this type of care.
CYP with complex health-care needs require
input from large numbers of professionals from
multiple agencies and care sites (Carter et al,
2007). In this study, understanding the organisa-
tional systems and interfacing with childrens
services proved challenging for the participants.
They described the centrality of their role, viewing
themselves as normally being the pivotal fgure in
community EoLC. With their usual partners in
adult health-care provision absent, they reported
confusion in role, responsibilities, and boundaries,
and in gaining information and support from
those with greater expertise in childrens services.
A clear, cohesive approach, with consistent imple-
mentation of care plans, is known to reduce both
anxiety and feelings of abandonment for families
and professionals alike (Sourkes et al, 2005;
OLeary et al, 2006; Quinn and Bailey, 2011).
The nurses reported being introduced to the
families in the late stages of the disease trajectory,
often with poor communication. They had
usually been bypassed during earlier periods of
care as a result of the existence of childrens
community nurses. These findings have been
briefy reported in previous literature (Spencer
and Battye, 2001; Bradford et al, 2012) and may
in part refect territorial attitudes from childrens
teams. Participants also criticised incidences of
untimely discharge planning from hospital. This
affected the development of professional commu-
nication pathways and opportunities to build
new skills. These issues are consistent with other
rural studies (Neilson et al, 2011; Wilkes and
Beale, 2001). This is disappointing because facili-
tating a seamless service has long been a goal for
health service provision. With early engagement
being a prerequisite for quality care (Gunther
and Thomas, 2006), there are real opportunities
for keyworker childrens nurses to facilitate local
nurses to familiarise themselves and develop a
rapport with particularly vulnerable families. This,
in turn, would enable EoLC to be exclusively
shaped for each CYP.
In paediatrics the term family-centred care
encompasses the concept of the client being the
patient and their family (MacKean et al, 2005),
and inclusion of their wider social and welfare
concerns. In the present study it appeared that
using an engrained holistic approach with
extended family members was more unusual for
participants without a child nursing registration.
Becoming so heavily involved with the family
and incorporating the needs of each individual
raised their levels of anxiety, especially with
potentially discordant perspectives leading to
increased strain in family relationships.
Nurses need to be sensitive to the level of
support and empowerment required by each family
member at any one time. This is not limited to,
but is amplified in, paediatric palliative care.
Families can be tired, angry, and indecisive,
particularly at the very late stages of palliative
care, so that pressures created through managing
this balancing act in the home setting may be
underestimated. This merits further study.
McCl oskey and Taggart (2010) bri efl y
commented on the risks for childrens nurses of
exposure to family anticipatory grief behaviours.
Inclusion of and interaction with the CYP and
their siblings raised more anxieties for the partic-
ipants without a child-nursing registration, even
though they acknowledged that openness was
preferable and that children were resilient. There
is a professional mandate for veracity and
communication with CYP and their families.
Nurses with an understanding of the emotional,
cognitive, and behavioural stages of development
of CYP are in an ideal position to help them
express their preferences, make sense of events,
and feel more in control (Dunlop, 2008). The
pressure to guide conversations sensitively and
diplomatically, with awareness that statements
cannot be retracted, may have led less-experienced
nurses to avoid this essential communication.
These fndings may therefore refect the levels of
Most of
the nurses
described
being
underprepared
to deal with
the emotional
impact of the
death of a
child or
young person.
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knowledge, communication skills, and confdence
required to deliver this type of care.
Although distressing, taking part in this
exclusive, intimate, and painful experience
resulted in a sense of achievement for some of the
nurses and in humbling gratification for the
majority. These testimonies of being enriched by
the creation of trusting relationships, emotional
connectedness, and positive bonds with the
childs family at a time of extreme vulnerability
are well substantiated (Papadatou et al, 2002;
Maunder, 2006), although other studies have
generally focused on observations in acute settings.
The patient demography, geographically
isolated locations, and inequitable cover from
specialist childrens nurses created significant
issues. These fndings are supported by many other
international rural studies (Beringer et al, 2007;
Nelson et al, 2007; Neilson et al, 2011; Bradford
et al, 2012), which also report issues in relation to
compromised quality of care and an increased
sense of isolation for nurses. Participants demon-
strated exhausting personal accountability and a
strong sense of ownership, going well beyond
their contractual responsibility to ensure rural
families needs were met. Pesut et als (2012) rural
Canadian study into adult nursing reported
similar fndings, although it did not consider the
emphasised pressures of caring for children.
Participants questioned their preconceptions in
an attempt to be non-judgemental, while simultane-
ously preserving lay and professional boundaries.
The rural community culture of sharing and
giving of opinions also resulted in a confict of
interests for these nurses. The challenges of main-
taining confdentiality, anonymity, and a good
reputation while interacting with the family and
community en bloc in both professional and
personal situations is well documented when
caring for dying adults (Wilkes and Beale, 2001;
Kenny et al, 2007; Nelson et al, 2007). The rarity
of child death appeared to exaggerate the
complexity of this dual relationship and is under-
reported in the paediatric literature. Feeling
burdened into being a pillar of support for the
entire local populace, where more personal
relationships are demanded, seemed to shape
advocacy roles and expectations for care, with
personal ramifications of the death through
community bereavement felt for years to come.
The nurses attempts to manage their personal
grief beyond their natural social networks
appeared to have been compromised by the
sparse professional support available. These
factors have been observed in adult nursing in
other rural settings (Wilkes and Beale, 2001) and
will be hightened by the additional complications
reported here. Denial of support mechanisms can
result in nurses being disenfranchised. National
investment in more sophisticated and readily
available telemedicine, linking specialist teams
directly to rural practices and the families at
home, could help to increase the available
support, improve communication, and enhance
knowledge and confdence.
Limitations
The participants were a homogeneous group,
analogous in culture, ethnicity, and gender and
all trained in the UK, and the families they cared
for were all from similar backgrounds. Although
this is in some senses a strength, it also poses
limitations on the transferability of the results
to other international rural contexts, where
demographic diversity, health-care structures and
priorities may differ.
Recommendations for practice
Emotional stress in nurses should be recognised by
managers and health-care commissioners, and
debriefng and refective practice should be made
available. Key issues related to CYP palliative care
should be introduced on adult palliative care
training programmes. Childrens nurses should be
identified as keyworkers to provide practical,
educational, and psychological support to adult col-
leagues. More sophisticated and available telemedi-
cine could link family homes and rural practices.
Further research
Additional research is needed into the emotional
impact of delivering care to CYP in the home as
opposed to hospital settings. The complexity of
the dual personalprofessional relationship expe-
rienced by rural nurses when caring for dying
CYP should be explored. Similar studies could
investigate the impact of this type of care on GPs
and allied health professionals.
Conclusion
The dearth of international literature relating to
the lived experiences of adult community nurses
caring for dying CYP in their homes suggests that
this is an underdeveloped feld of research. It is
evident that, regardless of their experience, the
nurses were affected by the deaths of the children
at both professional and personal levels, leaving a
legacy of unforgettable memories. The nurses
interviewed were highly experienced yet had
minimal exposure to this type of care in their
nursing careers. The data suggested that levels of
self-effcacy were directly related to type of train-
ing, with a child-nursing registration appearing
to be a positive influence in nurses coping
Resources for
providing
24-hour
end-of-life care
... were limited
as very small
local teams
and caseloads
were spread
over wide
geographical
areas.
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effectively with the unique pressures experienced.
There is a need for early interprofessional work-
ing, collaboration, and role clarity, affording
nurses the opportunity to build knowledge, skills,
and relationships. Specialist childrens nurses
should be expected and resourced, with the
assistance of technology, to act as keyworkers for
families. They should also provide direction,
education, and support to adult community
nurses involved in this type of care on an individ-
ual and timely basis. Ethical issues and dilemmas
around rural health-care were highlighted that
require more in-depth research, including into the
views of other health professionals. The fndings
illustrate the need for health-care commissioners
to comprehend these issues when planning
recruitment, resources, educational opportunities,
and staff support for this nursing group.
The international rise in the profile of CYP
palliative care, along with the publication of
guidance frameworks (Scottish Government,
2012), should give families the confdence to opt
for home as the place for quality EoLC for their
CYP. With this change in focus from a hospital
location it is likely that rural adult community
nurses will be increasingly involved in this care.
Protecting the wellbeing of this staff group will
help to ensure the quality and effcacy of care,
which may in turn signifcantly infuence both
family and professional bereavement.

Acknowledgments
The author wishes to acknowledge Irene McTaggart
(Senior Lecturer in Nursing, Professional Regulation,
College Lead Interprofessional Learning, University of
Dundee) for her academic supervision of the authors MSc
dissertation and for her support and encouragement in
disseminating the fndings.
Declaration of interests
This study had no external sources of funding. The authors
have no conficts of interest to declare.
ACT (2009) A Guide to the Development of Childrens
Palliative Care Services. Third edition. ACT publications,
Bristol
Barbour RS (2000) The role of qualitative research in
broadening the evidence base for clinical practice. J Eval
Clin Pract 6(2): 15563
Beringer AJ, Eaton NM, Jones GL (2007) Providing a
childrens palliative care service in the community
through fxed-term grants: the staff perspective. Child
Care Health Dev 33(5): 61924
Bradford N, Bensink M, Irving H et al (2012) Paediatric
palliative care services in Queensland: an exploration of
the barriers, gaps and plans for service development. Neo
Paed Child Health Nurs 15(1): 27
Carter B, Cummings J, Cooper L (2007) An exploration of
best practice in multi-agency working and the experiences
of families of children with complex health needs. What
works well and what needs to be done to improve
practice for the future? J Clin Nurs 16(3): 52739
Contro NA, Larson J, Scofeld S, Sourkes B, Cohen HJ
(2004) Hospital staff and family perspectives regarding
quality of pediatric palliative care. Pediatrics 114(5):
124852
Davies B, Sehring SA, Partridge JC et al (2008) Barriers to
palliative care for children: perceptions of pediatric
health care providers. Pediatrics 121(2): 2828
Dunlop S (2008) The dying child: should we tell the truth?
Paediatr Nurs 20(6): 2831
Elo S, Kyngs H (2008) The qualitative content analysis
process. J Adv Nurs 62(1): 10715
Gunther M, Thomas SP (2006) Nurses narratives of
unforgettable patient care events. J Nurs Scholarsh 38(4):
3706
Kenny A, Endacott R, Botti M, Watts R (2007) Emotional
toil: psychosocial care in rural settings for patients with
cancer. J Adv Nurs 60(6): 66372
Liben S, Papadatou D, Wolfe J (2008) Paediatric palliative
care: challenges and emerging ideas. Lancet 371(9615):
85264
MacKean G, Thurston WE, Scott CM (2005) Bridging the
divide between families and health professionals perspec-
tives on family-centred care. Health Expect 8(1): 7485
Maunder EZ (2006) Emotion work in the palliative nursing
care of children and young people. Int J Palliat Nurs
12(1): 2733
McCloskey S, Taggart L (2010) How much compassion
have I left? An exploration of occupational stress among
childrens palliative care nurses. Int J Palliat Nurs 16(5):
23340
Neilson SJ, Kai J, Macarthur C, Greenfeld SM (2011)
Caring for children dying from cancer at home: a qualita-
tive study of the experience of primary care practitioners.
Fam Pract 28(5): 54553
Nelson W, Pomerantz A, Howard K, Bushy A (2007) A
proposed rural healthcare ethics agenda. J Med Ethics
33(3): 1369
Nursing and Midwifery Council (2010) Standards for
Pre-Registration Nursing Education. NMC, London
OLeary N, Flynn J, MacCallion A, Walsh E, McQuillan R
(2006) Paediatric palliative care delivered by an adult
palliative care service. Palliat Med 20(4): 4337
Papadatou D, Bellali T, Papazoglou I, Petraki D (2002)
Greek nurse and physician grief as a result of caring for
children dying of cancer. Pediatr Nurs 28(4): 34553
Pesut B, McLeod B, Hole R, Dalhuisen M (2012) Rural
nursing and quality end-of-life care: palliative care ... pal-
liative approach ... or somewhere in-between? Adv Nurs
Sci 35(4): 288304
Price J, McNeilly P (2006) Developing an educational
programme in paediatric palliative care. Int J Palliat Nurs
12(11): 53641
Quinn C, Bailey M (2011) Caring for children and families
in the community: experiences of Irish palliative care
clinical nurse specialists. Int J Palliat Nurs 17(11): 5617
Rashotte J (2005) Dwelling with stories that haunt us:
building a meaningful nursing practice. Nurs Inq 12(1):
3442
Schreiner LS, Pimple C, Wolf Bordonaro GP (2009) Pallia-
tive care for children: preparing undergraduate nursing
students. Nurs Educ 34(4): 1625
Scottish Government (2012) A Framework for the Delivery
of Palliative Care for Children and Young People in Scot-
land. Scottish Government, Edinburgh
Sourkes B, Frankel L, Brown M et al (2005) Food, toys, and
love: pediatric palliative care. Curr Probl Pediatr Adolesc
Health Care 35(9): 35086
Spencer L, Battye L (2001) Palliative care in the community
for children with cancer in South East England. Eur J
Oncol Nurs 5(3): 1907
Swinney R, Yin L, Lee A, Rubin D, Anderson C (2007) The
role of support staff in pediatric palliative care: their per-
ceptions, training, and available resources. J Palliat Care
23(1): 4450
Thacker K (2008) Nurses advocacy behaviours in end-of-
life nursing care. Nurs Ethics 15(2): 17485
Wilkes LM, Beale B (2001) Palliative care at home: stress for
nurses in urban and rural New South Wales, Australia. Int
J Nurs Pract 7(5): 30613

IJPN
Protecting the
wellbeing of
this staff group
will help to
ensure the
quality and
effcacy of
care, which
may in turn
signifcantly
infuence both
family and
professional
bereavement.