The findings are presented according to our workshop objectives: 1) how to appropriately inform and engage patients in our patient safety research; and 2) sensitising researchers to patient experiences and exploring topics that will be further investigated through research in Phase 2 of the project.
Informing and engaging patient participants
Two main issues were highlighted in terms of how to inform patients about the research. The first was simplifying the patient information provided, and the second was the potential for raising concerns among patients about errors or poor care.
Feedback on phase 1 flyer: simplifying patient information
The information flyer for Phase 1 had been reviewed internally within the project team, and approved by an NHS Research Ethics Committee. However, participants expressed concerns about both the length of the flyer, and the language used to convey information about the study and taking part. They emphasised the need to reduce the burden on participants, recognising that they may be very unwell when receiving this information.
Patients drew our attention to particular words and phrases that could be simplified. For example, most patients agreed that the term ‘drip’ would be better than ‘intravenous medication’, and that asking patients about ‘using’ the pump would be more easily understood than ‘interacting’ with it. The information sheet also specified that patient names and hospital numbers would be ‘disposed of’ following data collection, which they thought was a poor choice of phrasing.
Patients wanted a shorter and simpler flyer; however, one patient who had Research Ethics Committee experience recognised that the longer format is what would be expected. The group also questioned the necessity of the legal note: “NHS Indemnity does not offer no-fault compensation i.e. for non-negligent harm, and NHS bodies are unable to agree in advance to pay compensation for non-negligent harm.” This was described as ‘gobbledygook’, but again the group agreed that this probably needed to be included if this was a standard phrase.
Feedback on phase 2 information sheets: concerns about safety and compromising care
To generate discussion about how to appropriately engage with patients in Phase 2 we provided patients with two potential versions of an information sheet. Sheet A was framed around ECLIPSE’s focus on “understanding and reducing the prevalence of medication error,” and sheet B was framed around “developing strategies to improve safety.” Sheet A was quickly dismissed as unworkable as there was broad agreement that mentioning the term ‘error’ could alarm patients. Sheet B was preferred; however, some patients were also concerned about use of the term ‘safety’:
Patient 1: “…immediately you flag up the word safety and you’ve got people worrying.”
Further discussion suggested that safety terms could be used, but they needed to be used with care. Patient 8 said they would be comforted to know that this work was going on and that safety was being checked. However, there was some recognition that while this might suit some patients, it might not be comforting to others. In summary, workshop participants were broadly supportive of the approach used in sheet B with an emphasis on quality improvement and improving safety rather than reducing error.
In addition, participants suggested that ‘poor’ should be deleted in the phrase “action will be taken if researchers have concerns about poor practice” which was initially intended to reassure patients but they thought it could raise concerns. They also did not think the phrase ‘action will be taken’ was informative and friendly. This resonates with existing research as patient do not want to engage in activities that can be seen to be ‘checking up’ because they have relationships to manage between themselves and their healthcare providers (e.g. ). To reassure patients who did not want to take part, the draft information sheets stated, “This would not affect the standard of your care.” However, there was some concern about how this statement could be interpreted and participants suggested improvements:
Patient 6: “The other thing that I would worry about, to a degree, is the sentence, this would not affect the standard of care you receive. […] I wouldn’t be sure whether that was a threat.
Patient 1: You have to say that, though, don’t you?
Patient 4: You could word it to say you’ll get the same care you always would.
Patient 5: Yes, it’s about reassuring people that if they drop out, they’re not – there’s not going to be any penalties for it, essentially, but it’s a horrible way of putting it. […] It’s one of those things that raises more questions than it answers.”
Some also raised concern about observers ‘checking’ their prescription as this could imply that there may be something wrong. Further, participants were keen to convey that this was a broader study across the whole ward and the hospital so patients did not feel their particular care was being singled out for any reason.
Informing research topics and sensitising researchers to patients’ experiences
Issues that emerged from patients sharing their experience of intravenous infusions have allowed us to draft a list of questions to consider for the patient interviews in Phase 2, which are broader in scope than our initial ideas and grounded in patient experiences:
What diversity is there in the way infusions are administered and what factors influence the patient’s perception of the quality of their care?
To what extent do infusion practices instil patients with confidence? Do they get the level and type of information they want? Do they understand enough about their intravenous treatment?
What issues do patients have with their intravenous medication administration and infusion pumps?
What does patient participation look like in the context of intravenous medication administration? What factors affect patient willingness to participate in safety behaviours related to their infusions? How interested are patients in their pumps? Do patients interact with their own pumps, and under what circumstances?
What information about intravenous infusions do patients think would be useful to provide other patients? What would be the best way to share this information, e.g. a leaflet?
How could intravenous infusion practice be improved from a patient’s perspective?
To demonstrate how these questions emerged from the workshop we highlight some of the topics discussed using direct quotations to preserve the patient’s voice.
Participants reported a wide diversity in the way infusions were administered and what influenced the quality of their care. For example, one patient complained about the lack of information received from some staff in the emergency department, despite asking:
Patient 7: “I kind of found it quite impersonal, to be honest with you, the approach of the nurses. […] It wasn’t really explained. […] when I asked what was going on and why it was being flushed with water, the answer that was given was kind of grudgingly given, as if to say, well, what’s it to do with you, you know. We’re in charge here.”
In contrast another patient felt that her care team involved her in her care, and kept her as happy and engaged as they could, which was critical to her recovery due to the extent of her illness and her extended isolation:
Patient 2: “In fact, during my 10 months seeing only healthcare professionals was actually really interesting because we cracked a lot of jokes, [and] some people might think they were theatrical, they were kind of trivial, not important, but in fact, they’re very, very important to keep the patient in focus, especially when the patient is very ill, to keep the patient as involved as possible.”
A different patient highlighted that the attitude of staff could reveal itself and impact their perception of care through indirect means; e.g., throwaway comments and discussions between staff, when they think patients cannot hear, can have a big impact on their confidence in their care:
Patient 6: “There was a nurse […] post-surgery, I was in the ICU for 48 h or something and then shipped up to the ward for, I can’t remember the phrase now, but specialised nursing. And so there was two nurses there for something like 48 h constantly […]. You know, lots of drips and infusions and pain relief. And one of them, obviously, was really annoyed that, as far as she was concerned, that she had to sit in a special wing. I mean, I was fairly well conscious by this time, but still, you know, morphine going in, so you’re sort of… so a bit cloudy and a bit vague […] and you can hear all these comments. And she’s teaching another nurse and she was saying, you know, we shouldn’t be doing this. We should be somewhere else in another ward, in a main ward, not in a side room like this. This is special treatment.”
Patients empathised with staff who often had to deal with difficult jobs in difficult circumstances, and who may be having a bad day, but they also recognised the need to be professional and thought that some staff just did not have the right attitude for the job. Patients also reported good experiences and were full of admiration for staff who contributed to their care and went out of their way to make them feel comfortable:
Patient 1: “If you think they know what they’re doing and they really want to help you, you feel much more relaxed and much happier about them attaching things to you and pumping things into you and pumping them out. And the really good ones do explain things. [One positive experience involved a member of staff waiting with me for my chemotherapy to finish long beyond the end of his shift.] And he didn’t moan at all. We had a long chat about holidays and where he came from [and] he just made me feel that I wasn’t being a nuisance. […] And when you’re so anxious about the whole thing, it makes such a difference.”
The provision of information can affect patient understanding. In one case a patient given a patient-controlled analgesia pump for pain relief did not know how often she could press the button and whether she could overdose. Patients also remarked on not knowing if air in the line is a problem for them to worry about.
Patient 1: “I was going to say, you don’t know whether you should be panicking about air in the line, do you, because as a patient, people say, you can get air in and you’ll be dead, so that’s the modern view of it – that’s the modern myth. I don’t know to what extent it’s true but that’s the perception people have […]”
Patients also did not know why pump alarms were going off.
Patient 3: “It’s that understanding of what and why and [Patient 5] very rightly corrected me. I said pumps go off for no reason and they go off for a reason because something’s wrong. I think [there is a] difference [between] the repetitive alarms when they’ve just been silenced [and] actual error alarms. I think that’s the patient safety issue. It’s not knowing whether [staff silence the alarms because they don’t have time to attend to actual error alarms or whether the alarm is for some sort of repetitive alert.]”
Patient 1: “if you’re a patient, you don’t speak pump beep, beep.”
Some patients would not dream of touching their pumps whereas others, particularly those in hospital for a long time, learnt how to use theirs to some degree.
Some participants expressed concern about their intravenous treatment being set up properly but felt it was hard to question processes they did not understand fully and in some cases were concerned about undermining the healthcare professional by asking questions.
Participants suggested developing a leaflet or poster or similar to improve understanding around intravenous infusions and pumps, to make people less frightened and empower patients to ask questions. Participants also raised the challenge of adapting information to the different needs of patients and their different reactions to it.
Participants were aware that the quality of staff, equipment and staffing levels would affect their care. The maintenance and availability of equipment was raised as a specific issue. Patients were aware of broken equipment being put aside, and shortages of equipment that needed to be borrowed from adjacent wards, which did not instil confidence in the equipment that they were relying on.
Patient 2 commented on how some staff treat the equipment “what I found with the equipment is that in the case of some nurses, not all, but some nurses, they don’t care. They have no attention to detail, they don’t care about the equipment and so the equipment isn’t working very well.”
The quality of equipment was brought up as a different issue as one participant felt that kinks in giving sets could be more prevalent or problematic with cheaper products.