Involving users in the development of effective critical care discharge information: a

focus group study with patients, relatives and health care staff

Introduction

This paper details a focus group study investigating the provision of effective adult critical

care discharge information. Effective and timely information delivery has been identified

as a key factor affecting psycho-social well being,1 a view supported by recent Department

of Health publications from the United Kingdom.2,3 Despite this, limited publications

discuss the development of written materials specifically designed to support adults during,

and immediately after discharge from critical care to a ward, 4,5,6 and few studies have

attempted to evaluate their effectiveness from the perspective of patients,6,7 relatives 6,8,9,10,11

or health care staff, 6,12 producing little evidence to guide current practice. Inaccurate,

untimely or inadequate information can increase patients’ and relatives’ anxiety,13 increase

levels of dissatisfaction with post discharge care14 and may impact on a patient’s ability to

cope during critical illness rehabilitation.15 A search for publicly available materials

identified booklets produced by organisations such as the Intensive care society (ICS),16

Society of Critical Care Medicine (SCCM),17and charities, such as ICUsteps.18 Commonly,

however, hospitals develop their own local materials, which are utilised variably across

departments, staff and organisations. Studies to date suggest, however, that, in conjunction

with other strategies used at the point of critical care discharge, well-designed written

information booklets have the potential to improve psycho-social well-being. 6,7,8,9,10

Information giving inevitably requires a complex intervention with many component parts

which can influence effectiveness.19 Coulter and Ellis argue that effective health

information should be based on patients’ needs, and users should be involved in the

development process.20 British guidelines for the acutely ill patient in hospital further

1

recommend that “patients should be…encouraged to actively participate in decisions

related to their recovery…” (page 16)2. There is, however, little evidence in the

International literature of user involvement in the design of information for this patient

population.

Method

This qualitative focus group study conducted in two hospitals in England (one utilising a

booklet produced by ICUsteps18 and the other providing ad-hoc verbal information alone)

sought the views of patients, relatives and health care staff with the purpose of obtaining

user insight into the context and mechanisms influencing successful information provision

at the point of discharge from critical care to the ward.21

Focus groups are group interviews on a specific topic which seek to generate qualitative

data, by capitalising on group interaction.22 Unlike individual interviews, focus groups offer

opportunity for debate and discussion allowing participants to influence and be influenced

by other group members, and the environment.23 Specific objectives were to ascertain

views on:

1. Methods for delivering adult critical care discharge information

2. The required information content

3. The benefits and limitations of existing information

4. Potential resource implications

Selection and description of participants

Patients and relatives were recruited in 3 ways:

Using a critical care unit database

Identification at a critical care follow up clinic run in two hospitals

2

Using a critical care website: www.icusteps.com

Eligible participants were adults (>18 years) with recent experience (in the last three years)

of being a patient in an Intensive Care Unit (ICU) or High Dependency Care Unit (HDU),

or a close family member or carer. Prior to recruitment, General Practitioner advice was

sought to establish any medical reason (such as death since hospital discharge) why a

potential participant should not be contacted. Those discharged within a month were

excluded as it was deemed likely that they might still be physically or emotionally

vulnerable. Those unable to speak or understand English were also excluded as the research

team had no expertise in facilitating discussions for non-English speakers.

In addition, nurses, physicians and Allied Heath care Professionals (AHPs) from both

critical care and the ward, with current experience of caring for patients during or

immediately after critical illness were recruited from one central London NHS hospital,

following information distribution and a hospital wide email calling for volunteers.

Data collection

Following best practice guidance from Krueger and Morgan, 23,24 8 audio-recorded focus

group interviews lasting 1.5 hours were held at two sites (Table 1).

Insert Table 1 here

Eleven patients (7 male and 4 female) and 8 relatives (1 male and 7 female) were recruited

(Table 2). All patients, except one had experienced ICU or a combined ICU and HDU.

Most patients (n=9) had spent more than 3 days in a critical care unit, and at the time of

data collection, at least 12 months since the critical illness had passed for the majority

(n=7). Except for one mother and one daughter, all relatives were spouses of the recruited

patients. All recruited patients and relatives were white British.

3

Insert Table 2 here

Twenty three health care professionals (9 males and 14 females), from a range of ethnic

backgrounds were recruited. The sample included 11 nurses, 4 AHPs and 8 medical staff

(Table 3).

Insert Table 3 here

Two researchers conducted the focus groups. One researcher moderated all discussions,

using a semi-structured interview schedule. Written notes detailing non verbal information

related to group interaction and the strength of any emotional responses were taken by the

second researcher.24 Examples of currently available information booklets 16,17,18 were also

used to stimulate discussion. A brief discussion between researchers at the end of each

focus group interview offered the opportunity to identify any potential threats to validity,

such as the use of leading questions.22 Notes pertaining to these aspects were added to the

written notes.

Ethical issues

Ethical (08/H0711/110) and research and development approval (KCH636 and SB062909)

were gained. Written informed consent was obtained, and all participants received a copy

of the signed consent form. During focus group research it cannot be guaranteed that all

group participants will adhere to confidentiality,23 participants were, however, strongly

encouraged not to discuss issues outside of the interview. Confidentiality from the research

team with regard to all data collected was further assured.

Data analysis

4

Analysis was undertaken from the broad perspective of critical realism,25 with an aim to

seek informed insights regarding contextual factors and the mechanisms underpinning both

successful and unsuccessful information giving.

At the end of each focus group interview, researchers made brief notes of emerging themes,

enabling some insight into whether data saturation had been reached.26 This information

was also used to justify minor changes to the interview schedule used in subsequent focus

groups. Analysis was based on full transcripts, which Krueger identifies as the most

rigorous approach.27 Interactions between participants and any potential effects imposed on

the data by the researcher,28 were incorporated into the transcripts in italics. This enabled

all data to be amalgamated into one primary data source.29

Content analysis, including the steps of coding, categorising and identifying themes30 was

undertaken with the aid of the computer software programme NVIVO7. During this

process, Barbour highlights the importance of paying attention to exceptions in the data,

and revising any emerging explanations in the light of contradictory cases.31 Patient and

relative data were analysed first to ensure that the service user perspective remained

predominant. Evidence to support or contradict preliminary themes was then sought during

analysis of data from other focus groups. Minor amendments to the original themes were

made following this process.

The return of data to the original participants for verification is problematic with focus

group research as it requires groups to be reconvened, and group dynamics may be

altered.31 Rather, samples of the transcripts were considered against the final categories by

a second researcher and three of the focus group participants (patient, relative and nurse),

all of whom verified them as reasonable interpretations.

5

Results

Three key themes were identified from the data. The categories underpinning these, and

their links to the research questions can be seen in Table 4.

Insert Table 4 here

Considerations related to effective information provision

Patients and relatives described critical illness as an enormous emotional and physical

experience, and spoke about the need to consider this when making decisions about both

the content and method of information delivery. Discussions further reflected the

importance of relatives as information givers:

Relative B: “…it’s a huge trauma, and, you know, for everyone involved, and the

information strategy has to kind of reflect that…

Relative C: …it’s not just the patient…As I say, we’re trying to impart information to

our relatives because they can’t, they simply can’t remember. They’re too

ill when they come out of intensive care.

Relative D: …you (talking to husband) have the easy job, you were lying in bed asleep…

Patient A: … I’m just thinking of my husband…he had a breakdown a couple of months

afterwards because of the pressure and the upset and all that he’d suffered.

And so there’s, there’s almost a duty of care to the relatives and their

psychological support as well as all the patients require”

Focus group 3

Patient A “… I think maybe not tell the patient as much like, but maybe inform the

relative and they could sort of tell them in an easier way”

Focus group 2

6

Feelings of abandonment and vulnerability, described by patients and relatives, were

related to the loss of close relationships developed in critical care. Where available,

outreach/follow up services were highly valued. The support and sense of familiarity they

offered had enabled patients and their families to feel more able to cope, thus facilitating an

environment conducive to successful information provision.

Limited concentration spans and difficulties absorbing information were frequently

identified as inhibitors of information, regardless of its content or delivery method. This

appeared to be made worse by communication difficulties associated with the presence of

tracheostomy tubes, and poor communication between health care professionals and with

patients/relatives.

Delayed and rushed discharges were further identified by health care staff as interfering

with the provision of effective discharge information. In addition, both critical care and

ward staff were described as being too busy to provide information. Some were also felt to

have inadequate knowledge and skill in this area. A lack of equipment and technical

support related to providing information were also evident.

The goals of critical care discharge information

Specific information required at this time included details about the actual transfer, as well

information about what to expect, including common physical and emotional problems.

Many of the patients wanted an opportunity to ask questions and gain answers and

expressed a strong desire to know what had happened to them:

Patient A: “Oh yes. I needed to know what had happened…from going home after

being out that evening, until I woke up on a general ward, I’ve lost all that.

7

Patient B: I couldn’t understand why I was in ...

Relative B: …Why you weren’t getting any better.

Patient B: Why I wasn’t getting any better. That was, that seemed to be, that was

important to me, that every day things were not happening and I’d be just

lying there and not being able to…”

Focus group 4

However, not everyone wanted to know reflecting the individual variation in information

needs:

Nurse B: “… But he didn’t really want to know, because I said, you know, I said,

‘Do you know how sick you’ve been?’ And he said, ‘No, not really.’ And

I said, ‘Do you want to know?’ And he said, ‘No.’ So I knew then that I’d

asked him and he didn’t want to know”

Focus group 5

Recognising that they were ready for discharge to the ward was seen as important and

participants from all focus groups suggested a range of different information strategies that

could assist in this area, including the use of discharge summaries:

Relative B: “I think it’s important just to have almost just a record of what happened…

there were sort of constant questions of what happened then, what happened

then, after this what happened”

Focus group 3

Patient A: “Maybe if there was something else maybe explaining why you were

actually in there in the first place, I think I know I would have liked that, I

8

don’t know about anyone else, but I definitely would have liked to know why

I was in there and how long I had been in there, and things similar to that”

Focus group 2

AHP B: “Often they haven’t been able to see how they’ve progressed …So they don’t

perceive that they’ve …Maybe some form of, you know, access to a medical

summary of their progress …for them to know about their medical progress

(enthusiastic)”

Focus group 6

Many participants spoke of the use of previous experience to support critical care

discharge. Images in the form of photographs, pictures and mirrors were seen as useful

information sources to help acknowledge what had happened, recognise the progress made

and to help prepare for what it would be like on the ward. There were, however, some

concerns expressed by the health care professionals that these could also have negative

connotations.

Despite the considerable physical challenges described, participants accepted the

requirement for more independence on the ward, but strongly emphasized the need for

assistance from health care staff during this process. Providing information about what to

expect and the patients’ and relatives’ role was seen as important to enable realistic targets

to be set, as illustrated by the following discussion:

Patient A: “…Yes, and, you know, nobody actually spoke to you about that, did they?

Relative A: No, nobody, no – how to be prepared and what I’d have to do

9

Patient C: … so a need to have been warned about the different levels of care, because

I had no idea, no idea whatsoever

Patient B: …Yes I think you know what to expect…you’ve got something to, you’ve got

some kind of – to work from.

Patient A: Yes, something like it, to take you through the process.

Patient C: And what to expect.

Patient A: Or your, yes, or your family”

Focus group 1

Participants also highlighted the importance of feeling safe, and discussed how this was

compromised if staff were unable to provide information. Effective information, in

contrast, was seen as able to alter perceptions of neglect:

Nurse D: “… they might not feel ready to go. (all nod)

Nurse B: … I do agree with you, it is about letting them know that they’re doing

well….

Nurse G: …And it’s more like a change in care…if we gave them information that

actually tried not to see it like that and say, ‘These are the things that you

can try now to do for yourself…so rather than putting emphasis on it being

like your care has been reduced, it’s more like your independence is being

increased”

Focus group 7

Methods for providing information to ward staff that would make patients and relatives feel

safer were also discussed. These included effective handover information and processes for

identifying the specific needs of the patient recovering from critical illness.

10

There was consensus that people had different information needs, and a clear view that

although some generic information was useful, the specific needs of patients and relatives

also needed addressing. Individualised information provided at different time points, and

the importance of making the right decisions about who should give and receive

information, and when and how much to give was discussed at length. The complexity and

multi-dimensional nature of the problem and the importance placed on appropriately

tailored information and choice is illustrated by the interchange in Box 1.

Insert Box 1 here

Resources

Many participants felt that inadequate information had been given about discharge to the

ward, and differences in the type and amount of information provided in critical care and

the ward were discussed at length. Some participants also discussed how inappropriate

information had increased levels of anxiety, and others pointed out that information could

never be effective unless the problems with the rest of the discharge process were

addressed:

Doctor I: “…It won’t work because here we don’t follow the patients up. And people

might interpret that as a failure of your information imparting processes,

where actually it’s not that. And that would function very well if the proper

discharge process was occurring. And I just don’t think you can divorce the

two”

Focus group 8

11

Most commonly, verbal and written information were discussed, although the availability

of discharge information books was variable. Positive views regarding the value of written

material were evident, but they were not seen as suitable for everyone:

Patient B: “… I mean I couldn’t use my hands properly. So me concentration wasn’t

exactly brilliant by any means. So probably reading through that (booklet)

at that point wouldn’t have been…”

Focus group 4

Doctor I: “My concern with this (booklet) is, is that a lot of our patients aren’t going

to be up to reading it”

Focus group 8

High importance was placed on ensuring that written materials were combined with the

provision of effective verbal information:

Patient A: “it would have felt a bit more sort of secure if maybe one of the nurses

talked like me through what it says in it (discharge booklet)…I probably

didn’t understand some of it”

Focus group 2

AHP A: “I think, for me, my main concern really is they give that (discharge

booklet) in lieu of speaking to the patient and I think it’s really, really

important that they have that dialogue and you make sure that, that you

know what’s been understood and what’s, you know, what things you might

need to revisit and make sure that the information does actually get across

12

rather than just going, ‘Oh that’s your leaflet, read that when you get to the

ward…

AHP C: …Yes, because they then have to be able to talk about what they’ve seen,

what they’ve heard, whether it’s actually related to them”

Focus group 6

Other information resources (for example audiovisual, internet) were also discussed,

although there were mixed views on their value, illustrated by a lively discussion that took

place between ward and critical care nurses (Box 2). In contrast, patients who had been

provided with a diary felt these could be useful ways of obtaining information during the

transition period.

Insert Box 2 here

Discussion

From the perspective of critical realism, this study sought to identify the context and

mechanisms associated with effective information provision21 based on user views and

experiences. In common with other research, findings highlight the enormous emotional

and physical impact of critical illness,32,33,34,35,36,37 which affects information delivery at this

time.

Content and delivery of information

Study findings illuminated different ways of providing information, but verbal and written

information were most common. Where available, information booklets had provided

general discharge information, but commonly failed to address individual needs. Many of

the booklets currently available16,17,18 include information on common physical and

emotional problems, but the Department of Health in England supports findings from this

13

study that detailed information on physical problems and recovery may not be appropriate

for patients at this point.3 Some important additions to current discharge booklets may also

be necessary. In particular, the inclusion of a ‘lay’ critical care discharge summary, to assist

patients to make sense of their experience and recognise the progress that they have made.

The positive view of patient diaries supports other work citing their value.38,39 Use of these

was commonly stopped upon discharge, yet they have a potentially important ongoing role

in facilitating understanding by providing opportunity for reflection. The value of others’

experiences and the use of images, for example mirrors to assist patients’ understanding of

their illness, were also discussed during the focus groups. Such findings warrant further

investigation as they have the potential to further prepare patients for their discharge and

recovery.

Findings reinforce those of McKinley et al, that effective information provision can reduce

the vulnerability experienced during critical illness and enhance feelings of security.40 It

must, however, be tailored to individual circumstances.2 The National Institute for Health

and Clinical Excellence (NICE) recommend that critical care patients should play an active

part in decision making related to their recovery.2 With assistance, some patients in this

study had both the desire and capability to be active participants in obtaining information,

yet many current information resources fail to address these considerations. Other research

work provides further evidence that increased participation can address individual

need,4,5,8,9,10 and findings from this study support ongoing investigation into this possibility.

Findings from this study support the views of Holden et al that the family must be

considered as part of the patient, affected by the patients’ critical illness.41 Previous

research has highlighted the increased anxiety relatives have upon critical care

discharge,10,43,32,42 and recommends the delivery of information specific to their needs.

14

Evidence from this study strongly supports such conclusions. The use of relatives as

information providers was clearly encouraged by participants in this study. Caution is

advised, however, as this responsibility could add to their already large emotional burden.

Resource implications

In this study, effective support from health care staff was found to be a critical component

of information delivery. Some authors note, however, that ward staff may not have the

time, experience or knowledge to meet the informational needs of this group of patients.44,45

Adequate attention to their preparation as information givers is therefore vital. Indeed, both

Huber and McClelland46 and Currie and Watterson15 support the view that this skill is a key

factor in facilitating improved patient outcomes. In this study, outreach/follow up nurses

enhanced perceptions of safety and coping, by enabling effective information delivery.

These findings are consistent with previous research that suggests that such roles can

improve both critical care discharge related outcomes and user experience.47,48

This study highlights that information provision cannot be considered in isolation and

attention to the continued improvement of all aspects of the discharge process is

paramount. This supports the view of Funnell that appropriately designed information, in

conjunction with other strategies, can empower critical care patients to gain mastery over

their condition.49

Findings from this study suggest that attention to the following elements could lead to the

provision of more effective critical care discharge information:

‘Lay’ patient discharge summaries

Separate core information for patients and relatives

Prompts for patients/families to identify individual needs and related questions

15

Provision of a diary

Input from critical care and ward staff trained in information delivery

Strengths and limitations

This study presents a set of rich and insightful data reflecting users’ views of critical care

discharge information. The recruitment of patients and their relatives from ICU and HDU

enables conclusions to be drawn about a range of critical care patients. Some caution needs

to be maintained, however, as all participants self selected, and all participating patients

and relatives were white British and able to communicate in English. Those working in

critical care also dominated focus groups with health care staff. The views of ward staff

may, therefore, not be fully reflected. Future studies would benefit from a focus on the

population groups not represented within this study. Additionally, further International

studies are encouraged to verify the results of this small English study.

Conclusion

This focus group study provides unique user insight into what influences successful and

unsuccessful information giving. Based on real experiences, it adds to the limited

International body of current evidence. Findings will be of value in designing future critical

care discharge information, and identifying the related resource implications.

Word count (excluding title, tables, acknowledgements and references) 3826

Summary of key points

Effective and timely information provided during the early post critical care

recovery period could improve psychological well-being for patients and their

families.

16

This study provides unique user insight into what influences the provision of

successful information when a patient is discharged from critical care to a ward

Findings suggest effective critical care discharge information should incorporate the

following elements:

-A ‘lay’ patient discharge summary

-Separate sections for core patient and relative information

-Prompts for patients/families to identify individual needs and related questions

-Provision of a diary

-Input from critical care and ward staff trained in information delivery

Acknowledgements

The study was part funded by the British Association of Critical Care Nurses (BACCN)

southern region and the Florence Nightingale School of Nursing and Midwifery, King’s

College, London. Thanks are extended to both NHS hospitals and all patients, relatives and

health care staff who took part in this study, and who provided assistance with recruitment

of participants and organisation of focus group meetings.

17

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