Background
Methods
Setting
Study participants
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 |
Job role | Number of participants |
---|---|
Medical and nursing staff | 10 |
Other care team staff | 7 |
Managers and other hospice staff | 0 |
Total participants | 17 |
Data collection
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
|
Data analysis
Research quality
Ethical considerations
Informed consent
Confidentiality and anonymity
Presentation of findings
Participant distress
Results
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 |
Doing palliative care work
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.“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 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’.“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)
Many participants described feelings of distress or disappointment 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 opportunity 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.“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)
All team members performed the cares that parents provided 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’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)
Several participants who had worked in a children’s hospice 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.“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)
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.“The world has changed; the equipment for the children has changed and we have to change with that.” (participant 4)
Looking after a child whose care was unfamiliar was identified as a key stressor. Some participants described a perceived pressure from parents to ensure care was carried out in exactly the same manner as they did it at home.“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)
However, because of the individualised care regimes of some children, there were limited opportunities to embed new learning in practice.“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)
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 insufficient time to provide emotional support and little blurring of the traditional professional patient boundaries.“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)
However, several participants found certain (and different) 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 different aspects of the work.“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)
Team and organisational dynamics
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.“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)
Several participants emphasised the importance of the shared understanding and experience in the team, enabling staff to support each other.“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)
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 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.“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)
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.“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)
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, sometimes 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.“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)
Consulting and including the care team in developments within the organisation and drawing on their expertise was reported to help participants feel valued in their role. If changes that impacted on them happened without consultation, it caused anxieties about the organisation and their own role in it.“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)
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.“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)
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.“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)
Individual resilience
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.“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)
Many participants expressed concerns about the wellbeing of colleagues they thought were at risk of burnout. Identifying one’s own vulnerabilities was perceived as more difficult, and a small number of participants who had experienced distress or burnout themselves had not seen the early signs.“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)
Discussing individual vulnerabilities with colleagues or managers was identified as a challenge. Some participants felt an implicit pressure to be strong, like the families they supported.“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)
The limited support available outside work and the emotional 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 organisation. Many but not all participants identified unmet needs for support. Several participants suggested that more training on work-related stress would help individuals identify their own strengths and vulnerabilities.“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)
Whilst many conveyed passion about their work (describing 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, maintaining 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.“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)
“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)