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Exploring the rewards and challenges of
paediatric palliative care work –a
qualitative study of a multi-disciplinary
children’s hospice care team
Johanna Taylor
1*
and Jan Aldridge
2
Abstract
Background: Children’s hospices are a key provider of palliative care for children and young people with life-limiting
and life-threatening conditions. However, despite recent policy attention to the provision of paediatric palliative care,
little is known about the role of children’s hospice staff and the factors that may impact on their wellbeing at work.
This study explored the rewards and challenges of working in a children’s hospice with an aim to identify staff support
and development needs.
Methods: We conducted an exploratory, qualitative study involving thematic analysis of semi-structured interviews with
34 staff and three focus groups with 17 staff working in a multi-disciplinary care team in a UK children’shospice.
Results: Participants identified rewards and challenges related to the direct work of caring for children and their families;
team dynamics and organisational structures; and individual resilience and job motivation. Participants described the work
as emotionally intensive and multi-faceted; ‘getting it right’for children was identified as a strong motivator and reward,
but also a potential stressor as staff strived to maintain high standards of personalised and emotional care. Other factors
were identified as both a reward and stressor, including team functioning, the allocation of work, meeting parent
expectations, and the hospice environment. Many participants identified training needs for different aspects of the role to
help them feel more confident and competent. Participants also expressed concerns about work-related stress, both for
themselves and for colleagues, but felt unable to discuss this at work. Informal support from colleagues and group clinical
reflection were identified as primary resources to reflect on and learn from work and for emotional support. However,
opportunities for this were limited.
Conclusions: Providing regular, structured, and dedicated clinical reflection provides a mechanism through which
children’s hospice staff can come together for support and learning, and demonstrates an organisational commitment
to staff wellbeing and development. Being aware of children’s hospice specific rewards and challenges can help to
ensure that staff feel supported and competent in their role. Breaking down barriers to discussing work-related stress
and enhancing awareness about early signs of burnout is also important.
Keywords: Paediatric palliative care, End of life, Children’s hospice, Work-related stress, Burnout, Staff support, Qualitative
research, Clinical reflection, Clinical supervision
* Correspondence: jo.taylor@york.ac.uk
1
Department of Health Sciences, University of York, Heslington, York YO10
5DD, UK
Full list of author information is available at the end of the article
© The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0
International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and
reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to
the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver
(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
Taylor and Aldridge BMC Palliative Care (2017) 16:73
DOI 10.1186/s12904-017-0254-4
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Background
Children’s hospices are identified as a key provider of
paediatric palliative care, which is defined as “the active
total care of the child’s body, mind and spirit”[1] and
supports children and young people with life-limiting
and life-threatening conditions from diagnosis through
end of life and their families in bereavement [2, 3]. In
the UK, children’s hospices support more than 7000
children and young people each year [4], which repre-
sents around 15% of those diagnosed with a life-limiting
condition [5]. A similar proportion of children and
young people in the US receive hospice care, although
due to the smaller number of children’s hospices in the
US, this is predominantly provided by children’s hospi-
tals and adult hospices [6].
Paediatric palliative care is now recognised as a distinct
specialty which involves multi-disciplinary teams working
across numerous organisations including hospitals,
community settings, and children’s hospices [2, 3]. The
important role of the staff working in this specialty has
been acknowledged in numerous reviews and guidelines
internationally [7–10], and educational standards and staff
competencies are now being developed [11]. However,
relatively little consideration has been paid to the specific
challenges of the work, [11] and studies highlight the
limited organisational and emotional support available for
staff [12, 13].
Paediatric palliative care has distinct differences from
adult palliative care which generally supports the end of
life phase of care [14], and from paediatric oncology
which although similarly supports children and their
families sometimes for many years including during end
of life [15], has a pathway that is focused primarily on
remission and cure [16]. In paediatric palliative care the
key focus is on palliation, including medical, physical,
emotional, spiritual and social care, as well as providing
continuous care at the end of life and help in bereave-
ment [17]. For staff this can mean re-negotiating
traditional professional boundaries to provide individua-
lised care that aims to enhance quality of life for
children and their families [18].
Children’s positioning within the family system also
has implications for the work, with the family being the
unit of care [19]. For children with life-limiting
conditions, parents are often experts in their child’s care
and assume responsibility for carrying out a range of
health-care procedures [20]. As well as working in
partnership with parents and supporting siblings, the
staff must respect the evolving role of children in
decision-making about their treatment and care [21].
This can involve assessing the benefits and drawbacks of
complex medical interventions and life-sustaining
technologies, and anticipating the clinical implications of
these treatments on the developing child [22].
A recent systematic review exploring staff’s experience
in providing end-of-life care across a range of settings
found that the work is both rewarding and challenging
[13]. The review identified the close relationships with
families and the importance of the work of supporting
children as key rewards. Maintaining appropriate bound-
aries and experiencing grief over the loss of a child were
identified as key challenges associated with this; other
challenges included time constraints caused by demand-
ing caseloads and staff shortages; communication
difficulties with parents, colleagues and management;
and barriers to co-ordinating care with other agencies.
End-of-life decision making and symptom management
were the most commonly cited challenges, although the
review observed that those with expertise or experience
in palliative care were more comfortable in providing
end-of-life care.
The review described the children’s hospice setting as
the most optimal work environment when compared to
hospital and community settings, referring to the
informal and home-like setting, and the priority and
time afforded to social, emotional and spiritual aspects
of care [13]. However, only two of the 16 studies focused
on children’s hospice work [18, 23] even though they are
a primary provider of palliative care [7], and the review
authors highlight the paucity of evidence exploring staff
experiences in this setting.
This paper aims to address this gap, reporting the
findings of a qualitative study exploring work-related
challenges and rewards, and support and development
needs in a multi-disciplinary care team in one children’s
hospice.
Methods
A qualitative exploratory design was used, adopting
an interpretive lens that focuses on the multiple-
perspective stories of individuals working in a
children’s hospice [24]. Methods included thematic
analysis of data from semi-structured interviews and
focus groups with care staff.
Setting
The multi-disciplinary care team of a large and well
established children’s hospice in England, providing
respite and end-of-life care for children and young
adults and their families.
Study participants
To explore multiple perspectives on the children’s
hospice role, all care team members not on maternity
leave or long-term absence were invited to take part in
an interview. A purposive sampling strategy was
employed during recruitment to ensure individuals with
different roles, backgrounds and time in post took part.
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In total, 34 care team members agreed to take part and
participated in an interview (see Table 1 for interview
participant roles).
Focus groups were then used to further explore work-
related rewards and challenges distinct to the children’s
hospice environment, using the shared identity and
experience of the group to generate discussions that may
not have occurred during individual interviews [25, 26].
A convenience sampling strategy ensured groups could
be convened, although efforts were made to include staff
with different professional backgrounds in each group to
encourage debate and diverse viewpoints (staff cover
was arranged to facilitate attendance). Three focus
groups were planned, each containing around six partici-
pants; this would allow for individual contribution as
well as group discussion, and enable differences between
groups to be explored [26]. In total, 17 care team
members took part (three participants also took part in
an interview), with group sizes ranging from four
to seven (see Table 2 for focus group participant roles).
As well as varying in occupational background and
professional training, the 48 participants had worked at
the hospice for different durations, ranging from
10 months to more than 20 years. Eight males and 40
females took part in the study. A total of 10 participants
had experience of supporting children and young people
with life-limiting or life-threatening conditions prior to
working at the hospice. Only a few participants had
received any training in paediatric palliative care
(exact number not provided to protect the anonymity
of participants).
Data collection
An interview topic guide was used to explore the
rewards and challenges of work and staff support and
development needs. The topic guide was based on mate-
rials developed for stage one of a study conducted by
Mukherjee et al. [27], which interviewed staff to identify
work-related demands and rewards specific to paediatric
oncology. In Mukherjee et al.’s study, the definitions in
Table 3 were presented to interviewees, and used as a
basis to explore sources of stress, reward and
satisfaction. As well as successfully capturing the range
of demands and rewards encountered by participants,
this approach yielded rich qualitative data on the experi-
ence of working in paediatric oncology, including sup-
porting children and young people during the end of life
phase. The same approach was therefore used in the
study reported here, with topic guides adapted to reflect
the children’s hospice setting and palliative care focus.
All interviews were conducted face-to-face by JT,
either in a private room at the hospice or in participants’
homes. Interviews were audio recorded and transcribed
(intelligent verbatim) with participants’consent and
destroyed after data analysis. They ranged from 33 to
76 min (median duration 47 min).
The focus groups were run by JT, with JA assisting in
facilitation and note taking. An hour was allocated for
each focus group due to staff cover arrangements. First,
in small groups, participants discussed and wrote down
the demands and rewards associated with their work,
again using the definitions in Table 3. The whole group
then discussed these together to explore similarities and
differences between participants, and understand more
about why certain factors relating to work were identi-
fied as demands or rewards. These lists and detailed field
notes taken by JT and JA (during and following each
focus group) were used as data; we did not audio record
the focus groups due to concerns about participant
confidentiality and anonymity.
All data were collected between December 2010 and
May 2011.
Data analysis
Interview and focus group data were analysed themat-
ically to explore work-related challenges and rewards
and to examine other themes within the data that
pertained to work-related stress or staff support and
development. Field notes and participant lists from
each focus group formed a unit of analysis, and were
analysed alongside interview transcripts rather than
conducting separate analyses. This approach was
adopted in part due to concerns about anonymity
(see section on Ethical considerations) but also be-
cause we were interested in exploring the range of re-
wards and challenges experienced by children’s
hospice staff rather than the differences expressed by
Table 1 Interview participant roles
Job role Number of
participants
Medical and nursing staff (doctors,
registered general and specialist nurses)
10
Other care team staff (allied health professionals,
nursery nurses, therapists, and care staff with other
qualifications and skills)
20
Managers and other hospice staff 4
Total participants 34
Table 2 Focus group participant roles
Job role Number of participants
Medical and nursing staff 10
Other care team staff 7
Managers and other hospice staff 0
Total participants 17
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individuals versus groups, and each data source con-
tributed to this understanding.
Using principles of the Framework method, data
analysis involved a process of familiarisation (through
reading and re-reading of data); identification and organ-
isation of challenges, rewards, support and development
needs, and other themes in the data (through making
notes on transcripts and focus group data, highlighting
key words and concepts, listing and grouping themes
together to create a coding framework); coding of data
segments (defined as extracts of meaning relating to
themes and subthemes); and comparison across and
within cases to explore further the patterns of themes
identified and develop higher order explanatory
themes [28].
Three researchers analysed and interpreted the data
(JT, BW, JA). On-going reflection between JT and JA to
refine themes and identify relationships between themes
in the data formed part of the analytic process.
Research quality
Study quality was assured against several criteria, includ-
ing dependability, credibility and authenticity [29]. The
use of topic guides for interviews and focus groups
provided a standardized approach to data collection and
a detailed audit of processes was kept to create depend-
ability. A good sampling strategy, including assessment
of data saturation during data collection to determine
the final sample size for interviews, helped assure
credibility. To assure authenticity, two meetings were
held with care team members following the study to
discuss emerging findings; this led to good respondent
validation and feedback. The findings have also been
discussed with other hospices and presented at national
conferences; feedback confirms that the key findings
resonate with the experience in other settings.
Ethical considerations
For this study, specific consideration was given to the
process of informed consent, confidentiality and anonym-
ity, the presentation of findings, and participant distress.
Informed consent
The children’s hospice involved gave overall permission
for the research team to conduct the study, and in doing
so, access to its staff. Therefore, to ensure that staff did
not feel pressured to take part they were invited in writ-
ing by the research team rather than the organisation,
and provided with comprehensive information about the
study, why it was being carried out, and how their infor-
mation would be used.
Confidentiality and anonymity
Members of staff who were interested in taking part in
an interview were asked to contact the research team
directly either by phone or email, or by completing a
response form and returning it to the researcher. This
was to ensure their participation remained confidential.
As this was not possible for focus groups because of
their timing and location, the decision was taken to use
field notes rather than audio recordings. This also
informed the decision to combine interview and focus
group data during analysis.
Care was taken to ensure that participants could not
be identified in presentations or reports, particularly as
it was likely that the children’s hospice was identifiable.
While it was important that participant characteristics
were provided to aid the reader, this was censored by
the need to ensure that the anonymity of participants
was maintained.
Presentation of findings
Participants and others involved in providing feedback
on the study were keen that we present our findings in
full to show the overlapping and sometimes conflicting
nature of work-related challenges and rewards, and the
negative as well as positive aspects of working in a
children’s hospice. This informed our decision to
provide sufficient detail when reporting the findings
and to include reference to the data for each main
analytical theme.
Participant distress
Because of the study topic and exploratory design, it was
possible that some participants might become distressed
during interview, or identify themselves as being at risk
of, or experiencing, work-related stress or burnout. To
ensure that participants were able to follow this up
should they wish to, they were directed to the organisa-
tion’s clinical psychologist.
Table 3 Definition of work-related demands and rewards
Work-related ‘DEMANDS’Work-related ‘REWARDS’
‘Things which you have found, or are finding, difficult, upsetting,
annoying, challenging and / or a hassle’
Demands can be:
One-off / Occasional / Regular / Everyday
Things that are demanding at certain times and not others
‘Events or situations which you experience, or things which you do or have
done, which have been, or are, rewarding’
Rewards can be:
One-off / Occasional / Regular / Everyday
Adapted from Mukherjee et al. [27]
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Results
Seven main themes identified work-related challenges
and rewards; making a difference and getting it right; a
multi-faceted role; complexity of children’s care; team
functioning; being valued; individual coping; and job
motivation. These themes fed into three over-arching
categories impacting on wellbeing at work: doing pallia-
tive care work; team and organisational dynamics; and
individual resilience (see Table 4).
Doing palliative care work
Participants portrayed a ‘multi-faceted role’that required
a combination of different skills, traits and knowledge. It
was a generic role across the team, and participants
explained that all care team members were expected to
meet the holistic needs (physical, emotional, social and
spiritual) of the children and families they supported.
Many participants talked about ‘making a difference’in
their role to help enhance families’quality of life, being
aware of the challenges families face in everyday life.
This insight motivated participants to provide high
standards of holistic care, beyond meeting physical and
medical needs. It was important and rewarding to
participants that they were ‘getting it right’and that the
families received a good service.
Many participants explained that an emotional invest-
ment was necessary to achieve this, which they believed
could place them at risk of distress as they formed close
relationships with children and their families.
“This job is physical, mental and psychological. You’re
giving [your] whole. It’s like no other job I’ve ever
done.”(participant 31)
Some participants explained that the commitment to get
it right and the informal relationships formed with
families could make it difficult to say no to requests
from families (e.g. trips out or activities for siblings).
This was reported to place additional pressures on the
team, especially during busy times or when staff
numbers were low.
“I think sometimes we try to please too many people
most of the time and then we have shifts where it all
goes wrong …you might have ten families and really
we have barely enough staff to give them the kind of
care that we are promoting.”(participant 26)
Some participants explained that they were reluctant to
ask for help during these times, and described the efforts
to maintain a positive front for families and to put
themselves under additional pressure to ‘get it right’.
“There are times when there are some very poorly kids
and if there is only (a few) of you on [shift] it is very
physical and it is very demanding …but I think
sometimes we just carry on coping and it is like, we
aren’t very good at asking for help.”(participant 35)
Many participants described feelings of distress or disap-
pointment when they were not able to meet families’
needs. Having an opportunity to debrief (formally or
informally) after particularly challenging events or shifts
played an important supportive function, although many
participants explained that these opportunities were
limited. Participants identified group clinical reflection
(facilitated groups in which colleagues have an opportun-
ity to explore and discuss their experiences and reflect
critically and systematically on particular issues or matters
raised by the work) as useful to reflect on difficult or
distressing aspects of the work as a team.
“It’s just looking at things in a bit more depth and
interesting to hear different people’s attitudes…making
the understanding a bit more clear, or giving you a
different perspective on something, or feeling that if
you’re in that situation again you might be able to
deal with it a bit more competently.”(participant 5)
All team members performed the cares that parents pro-
vided at home. The ‘complexity of children’s care’varied,
with some children requiring very little clinical care and
others requiring very complex and individualised care.
Some participants noted that the time required for this
aspect of the work could impact negatively on the wider
role of meeting social and emotional needs.
“It is like intensive care sometimes …and there is all
this new equipment and there is like more and more
expected of us …we are not spending quality time
with them [children].”(participant 35)
Several participants who had worked in a children’shospice
for a number of years believed that the proportion of
children with complex care regimes and life-sustaining
technologies had increased, reflecting advances in medical
technology. This, they explained, had increased needs for
training and support.
Table 4 Themes identifying work-related challenges and rewards
Overarching categories Main analytical themes
Doing palliative care work Making a difference and getting it right
A multi-faceted role
Complexity of children’s care
Team and organisational
dynamics
Team functioning
Being valued
Individual resilience Individual coping
Job motivation
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“The world has changed; the equipment for the
children has changed and we have to change with
that.”(participant 4)
The skills required to carry out certain nursing tasks and
manage the range of life sustaining technologies was
reported to place both nursing and other staff outside
their comfort zone.
“One minute you are having to deal with let’s say …
TPN [total parenteral nutrition], and we have had
quite a lot of input about that …then the next minute
you have got the child on a ventilator and then
another time you have got tracheotomies …that is
where the anxiety comes.”(participant 17)
Looking after a child whose care was unfamiliar was
identified as a key stressor. Some participants de-
scribed a perceived pressure from parents to ensure
care was carried out in exactly the same manner as
they did it at home.
“When parents are such experts and they are watching
you do everything, some people find that difficult or
maybe the parents do it slightly different and might
pick up on that and then people get a little bit
worried.”(participant 4)
However, because of the individualised care regimes of
some children, there were limited opportunities to
embed new learning in practice.
“We don’t often get children with dialysis …it is
almost like you need re-training each time …whereas
if you are on intensive care or a dialysis ward it is just
second nature isn’t it.”(participant 35)
In general, participants valued the diversity of the
children’s hospice role and welcomed the opportunity to
provide holistic care and be involved with a range of tasks.
Participants who had previously worked in NHS settings
compared the two roles; the former being mainly focused
on providing and documenting clinical care, with insuffi-
cient time to provide emotional support and little blurring
of the traditional professional patient boundaries.
“You have just got time, the quality time to spend with
the patients and their families whereas in the hospital
you have literally got ten minutes to see a patient
regardless of whether they are upset or crying.”
(participant 30)
However, several participants found certain (and differ-
ent) aspects of the role more challenging than others.
All participants wanted to feel confident and competent,
but the multiple and varied duties expected of them and
the individualised and complex care needs of some of
the children meant this was not always the case. Many
participants identified on-going needs for training,
mentoring and support to increase confidence in differ-
ent aspects of the work.
Team and organisational dynamics
The team was identified as the core unit of delivery and
the contrast between a ‘team functioning’well and one
not was a central theme in the data. When asked, some
participants were not able to explain what helped the
team function well; others identified numerous factors
that they believed could change how well individuals
worked together as a team.
“The team are very supportive of each other, but it can
change depending on what’s going on …because the
children might have changed, the team might have
changed, sickness …sometimes the issues are very
hard to get to the bottom of.”(participant 4)
A poor functioning team was described as a key stressor.
Conversely, when the team functioned well there was a
calmer and happier atmosphere, harmony between
colleagues and a sharing of efforts. Participants reported
feeling more positive about work, found it easier to
‘switch off’at the end of a shift and felt valued by
colleagues, who were identified as the key source of
informal support for the majority of participants.
“For me, by far the biggest source of support is the
informal support that comes from the other team
members…just kind of in and amongst everything
else.”(participant 15)
Several participants emphasised the importance of the
shared understanding and experience in the team,
enabling staff to support each other.
“Informally, I think the staff support we get is better
than anywhere else I’ve worked because we are all
doing something very similar and then we have got an
understanding. If you have been dealing with a dying
child other people have been there who are around
you.”(participant 10)
However, informal support was not always available.
Working continuously alongside families restricted
opportunities and some participants felt isolated from
colleagues, particularly when they were providing
intensive one to one care during a shift. Handover was
identified as having some potential, but many participants
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observed that due to the amount of information to be
transferred this rarely occurred. Handover was also, for
some participants, a source of stress because the allocation
of work, which occurred during handover, could lead to
conflict between colleagues. This was linked to some
participants not feeling confident in all aspects of the role,
and worrying about being asked to take responsibility for
certain tasks that they believed others in the team were
more suited for.
Team conflict, which was identified as a key stressor by
nearly all participants, was reported to impact negatively
on team functioning and further isolate colleagues from
each other. There were few opportunities to address con-
flict within the team and a perceived pressure to make
sure families were not exposed to this. Some partici-
pants believed that being able to reflect constructively
on work as a team helped to reduce conflict.
“People feel bound together as a team because they are
able to talk through things with each other, so it
strengthens the team and they are able to work
through and actually think of new approaches to a
problem or issue or understand it better or maybe just
learn from each other or how people tackle things.”
(participant 7)
For some participants, the organisation’s commitment to
providing regular clinical reflection and other forms of
support and training was seen as a way their own
commitment to supporting children and families was
acknowledged by the organisation. However although
the organisation provided cover for staff to attend,
many participants, including those working part-time
or night shifts, were not able to attend as often as
they would like.
Some participants who had in previous roles re-
ceived clinical supervision, (a formal process of pro-
fessional support and learning for individuals which
enables them to develop knowledge and competence
and help sustain wellbeing and quality work), were
surprised this was not standard practice in the hos-
pice and believed that the lack of clinical supervision
contributed to a feeling of not being valued by the
organisation.
‘Being valued’at work was important to participants
and they welcomed feedback that their contribution
was ‘making a difference’. This might come from the
work itself, from families, or from their colleagues
and the organisation.
“We need to know that we are appreciated and it is
all too easy not to say those things ... occasionally you
know you will get a thank you …somebody would say
‘oh thanks it has been a really good shift’and you
would go out and you would feel nine foot tall you
know.”(participant 35)
Many participants welcomed the fact that whatever their
background, they were treated as an equal member of the
team because of the shared duties of care. However, some-
times this led to individual skills and experience being
under-utilised. There was a feeling that the hospice could
make greater use of the range of experience available.
“There are so many people on the team who have
got skills who could bring so much benefit to the
team with regards to training, advice, education …
but they don’t encourage people to use these skills.”
(participant 30)
Consulting and including the care team in develop-
ments within the organisation and drawing on their
expertise was reported to help participants feel valued
in their role. If changes that impacted on them hap-
pened without consultation, it caused anxieties about
the organisation and their own role in it.
“There are ways to implement changes and let people
talk it out and see what there is, but you’re told to do
it and that’s it you know, and it’s not always for the
best…I just think if management listened more to
staff. Because on the whole the staff here they’re damn
good staff really.”(participant 22)
Not being valued by the organisation was identified as a
key stressor and one that could lead to feelings of
resentment and a feeling of ‘us’and ‘them’between the
team and senior management.
“Sometimes we do get a pat on the back, but it’s not
enough and I have said it before and I will say it
openly again that the most important commodity…is
the staff and that’s not what comes across.”
(participant 2)
The hospice itself, which was described as a peaceful and
spacious setting with excellent facilities and equipment,
was identified by many participants as an enabling factor
and a rewarding aspect of work. Being able to park at
work and enjoy home cooked food were also valued.
Participants who had worked in NHS settings reported
that the facilities and equipment were far superior in the
hospice. However, some participants acknowledged that
this could quickly be taken for granted.
Individual resilience
All participants explained that factors outside of work
could impact on their ability to cope with work-related
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challenges and experience the rewarding aspects of their
work. Several participants described negative events in
their own lives that had impacted on their resilience at
work, and their capacity to provide emotional support to
families and colleagues during these times.
“When I had my own problems I struggled, well I
struggled to come into work at all …I felt like I had
lost confidence really and felt like very vulnerable with
all the new machinery but that was partly my
problem, what was going on in my life as well.”
(participant 35)
Participants described ‘individual coping’strategies they
used to help minimise the impact of work-related
stressors on their lives, and the importance of creating
some separation between work and home life. These
included discussing particular events with a colleague at
the end of a shift, using the drive home to reflect on
work, or associating other practices with the ending of
work, such as taking the dog for a walk or changing out
of work clothes.
Only a small number of participants identified ei-
ther formal or informal sources of support outside of
work (e.g. external clinical supervision or close friends
who worked in a similar role). The majority identified
barriers to obtaining informal support outside work.
These included patient confidentiality, the ‘taboo’sur-
rounding the work and not wanting to burden others
who lacked the shared understanding of colleagues.
“You would talk more with your colleagues about work
related things but I would never go telling my friends
…I just don’t think people understand what goes on in
the hospice. I think it needs to stay at work.”
(participant 30)
Many participants expressed concerns about the wellbeing
of colleagues they thought were at risk of burnout. Identi-
fying one’s own vulnerabilities was perceived as more diffi-
cult, and a small number of participants who had
experienced distress or burnout themselves had not seen
the early signs.
“You don’t always see clearly what your needs might
be even if you’ve got the experience to draw on, like
you know, I always find it easy to talk to people and
share experiences; why wasn’t I doing it, you know?”
(participant 25)
Discussing individual vulnerabilities with colleagues or
managers was identified as a challenge. Some partici-
pants felt an implicit pressure to be strong, like the
families they supported.
“If you are the type of person who you feel you should
be coping, you won’t go and seek help because that
means that you’re not, do you know what I mean? …
You know I work at [children’s hospice], I work with
death all the time so I should be able to manage it.”
(participant 9)
The limited support available outside work and the emo-
tional intensity of the role, which many participants felt
that only those working in this area would understand,
created a greater need for formal provision from the or-
ganisation. Many but not all participants identified un-
met needs for support. Several participants suggested
that more training on work-related stress would help in-
dividuals identify their own strengths and vulnerabilities.
“In caring situations lots of us are here because we
need to be needed. I am a person who needs to be
needed. I can’t help that. That is part of me but I
know that and so I am aware of it …But some people
don’t recognise it. That is the hard thing I think.”
(participant 1)
Whilst many conveyed passion about their work (describ-
ing what would traditionally have been called a vocational
motivation), ‘job motivation’varied across the sample and
some participants believed that their needs as an employee
(e.g., for professional development and training, maintain-
ing a work-life balance) were sometimes overlooked
because of the pressing priority of the children and their
families. At the same time, participants valued the needs of
children and their families being paramount. This conflict
was evident in many accounts; wanting to get it right and
make a difference, but at the same time wanting their own
needs to be addressed.
“It is about emotional investment, it is about
commitment, it is about going the extra mile, and
being alongside parents. But it’s sometimes more than
that, that job can be done far, far better and far more
effectively if there are systems in place in which people
develop and grow.”(participant 3)
Discussion
In this study, three main, interlinking areas were found
to impact on wellbeing at work: doing palliative care
work; team dynamics and organisational factors; and in-
dividual resilience. Seven specific themes, contributing
to these three main areas, identified work-related chal-
lenges and rewards, with the potential to both enhance
and impede wellbeing at work. The study also sheds
light on the interactive and synergistic relationship be-
tween these factors, and the impact that organisational
structures and values, including the provision of support
Taylor and Aldridge BMC Palliative Care (2017) 16:73 Page 8 of 11
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
and development opportunities and the ethos of provid-
ing holistic care, can have on staff’s experience of work-
ing with children and their families in a hospice setting.
In line with other studies [13], the commitment of
staff to deliver consistently high standards of clinical and
holistic care in keeping with the children’s hospice phil-
osophy was identified as a challenge, a reward and a mo-
tivator for the work. This might help to explain why
individuals have high expectations of themselves, the
team and the organisation, or conversely, how feelings of
negativity and disappointment arise when they them-
selves, the team or organisational factors make this diffi-
cult to achieve, or when it is felt that the organisation
does not value their commitment to providing quality
care. The present study found that while the diversity in
the hospice role was rewarding for staff, it could also
cause anxieties when aspects of care were unfamiliar or
at the limits of their own knowledge and skills. Providing
regular training and support for the work is important
to help staff feel confident and competent in what is in-
creasingly recognised to be a multi-faceted and specialist
role [11, 30].
The emotional investment in the work was ac-
knowledged as rewarding and contributing to job sat-
isfaction, but also sometimes placing individuals at
risk of distress and potential burnout. McConnell et
al., identified this as one of the key stressors for staff
providing end-of-life care to children and young
people [13]. Supporting work life balance, and ensur-
ing regular opportunities to reflect on emotional and
distressing aspects of work, is therefore not surpris-
ingly, important to the staff. Enabling the team to
function well was also important, helping individuals
to ‘get it right’and experience the rewards associated
with this. Enabling individuals to support each other
by addressing interpersonal conflict has been found to
impact on quality of care and the rewards of work
[23, 31].
The importance of individual factors and resilience
emerged as significant in the present study, which
revealed differences between participants in relation to
their motivation to work in a children’s hospice, their
relationship with the organisation itself, and their
perceived risk of work-related stress and burnout. A
‘vocational motivation’can contribute to resilience [32],
as can recognition by the organisation for the work [33],
including the provision of such mechanisms as training
and appropriate clinical supervision [12]. Although there
is some evidence that individuals can increase awareness
of their own protective and vulnerability factors and so
increase their own resilience [34], participants in the
present study reported that it can be more difficult to
recognise signs of stress and burnout in oneself than
in others.
Support from colleagues and the organisation, with
opportunities to discuss work in clinical reflection, were
identified in this study as the primary resources for
emotional support and learning. Other research also
identifies these as important strategies [13, 31], partly
because of the shared understanding among the staff
about working with children and young people with life-
limiting conditions, but also because of the need to
explore and learn from events as a team. In this study,
few participants reported being able to regularly and
consistently attend structured group provision and some
individuals expressed a need for more individualised
clinical supervision. Traditionally, this has not been
routinely provided to staff in palliative care settings [12],
which is perhaps surprising considering the important
role of clinical supervision for medical and nursing staff
more generally [35].
Scales that measure work-related stressors and
rewards have the potential to identify important
factors affecting individuals [36], which could then be
addressed through interventions like clinical supervision.
However, while appropriate support and development
opportunities are important, some of the stressors identi-
fied might be addressed through improved organisational
practices, perhaps challenging existing notions that
hospice environments do not suffer from the organisa-
tional difficulties present in other settings [13]. This was
also highlighted in a recently published framework to sup-
port the wider hospice workforce [12], which found that
“the quality of the work environment has a significant
impact on stress levels, and most situations could be
improved by effective leadership, a participatory culture
and good line management of staff and volunteers”(p.5).
The report recommends that organisations take the lead
on developing and nurturing staff engagement. The
present study suggests that in addition to providing appro-
priate support and training, involving staff in decision-
making and change within the organisation and utilising
the diversity of skills and expertise across the staff team
can contribute to staff feeling more engaged.
Conclusions
The specific challenges and rewards identified in the
present study highlight some of the support and
development that may be required for children’s
hospice staff to feel competent and confident in what
is a multi-faceted and emotionally demanding role.
Limiting exposure to potential stressors and enhan-
cing rewards through better support and development
is a potentially useful strategy to help prevent work-
related stress and burnout, which for participants in
this study was perceived as a risk associated with the
work of supporting children with life-limiting condi-
tions and their families.
Taylor and Aldridge BMC Palliative Care (2017) 16:73 Page 9 of 11
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Organisational structures play a key role in ensuring
that the emotional investment individuals make in
delivering quality palliative care is valued, and that
appropriate support, development and training for their
role in supporting children and their families and their
own wellbeing is available. Providing regular, structured
and dedicated opportunities for staff to engage in clinical
reflection or individualised supervision can provide a
mechanism through which children’s hospice staff can be
supported, and demonstrates an organisational commit-
ment to staff wellbeing and development. Reducing
barriers to discussing work-related stress and enhancing
awareness about early signs of burnout are also important.
Acknowledgements
This article was undertaken as part of the Martin House Research Centre which
is supported by Martin House Hospice Care for Children and Young People and
the University of York.
This research would not have been possible without the generous support of
the staff who took part in this study. Their willingness to share their views and
own experiences of work-related stress and burnout with the researcher was
invaluable.
We would also like to acknowledge the input of Professor Bryony Beresford and
Dr. Suzanne Mukherjee in the Social Policy Research Unit at the University of York,
and the contribution of Dr. Beth Watts who assisted with the analysis of data.
Funding
This research was funded by the Department of Health (UK) £30 million
funding for children’s palliative care (grant reference CPC30/R2/338).
Availability of data and materials
The data that support the findings of this study are available on request
from the corresponding author [JT]. The data are not publicly available as
they contain information that could compromise research participant
privacy/consent.
Authors’contributions
JT and JA conceived of the study and contributed to the analysis and
interpretation of data. JT conducted all participant interviews. JT and JA
facilitated all focus groups. JT and JA drafted the manuscript. Both authors
read and approved the final manuscript.
Ethics approval and consent to participate
The English National Research Ethics Service defined this study as an
evaluation of staff support and development needs; therefore, it was not
eligible for ethical review by a statutory body. The research team adhered to
the Economic and Social Research Framework for Ethics [37]. All participants
provided written informed consent to participate in the study.
Consent for publication
All participants provided written informed consent for future publication of
their anonymised data.
Competing interests
The authors declare that they have no competing interests.
Publisher’sNote
Springer Nature remains neutral with regard to jurisdictional claims in
published maps and institutional affiliations.
Author details
1
Department of Health Sciences, University of York, Heslington, York YO10
5DD, UK.
2
Martin House Hospice Care for Children and Young People, Grove
Road, Boston Spa, West Yorkshire LS23 6TX, UK.
Received: 3 January 2017 Accepted: 30 November 2017
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