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Patients' perceptions of early supported discharge for chronic obstructive pulmonary disease: a qualitative study
  1. A Clarke1,
  2. R Sohanpal2,
  3. G Wilson3,
  4. S Taylor2
  1. 1Health Sciences Research Institute, Warwick Medical School, University of Warwick, Coventry, UK
  2. 2Queen Mary University of London, Barts and The London School of Medicine and Dentistry, Centre for Health Science, Institute of Health Science Education, London, UK
  3. 3Hammersmith Hospitals NHS Trust, Charing Cross Hospital, London, UK
  1. Correspondence to Dr Aileen Clarke, Health Sciences Research Institute, Warwick Medical School, University of Warwick, Coventry CV4 7AL, UK; aileen.clarke{at}warwick.ac.uk

Abstract

Objective To explore patients' views of an early supported discharge service for chronic obstructive pulmonary disease (COPD).

Intervention Early supported discharge service (EDS) with discharge at 3.5 days (average length of stay for COPD at the time was 9.5 days). After discharge, patients were visited at home daily for 3 days by a nurse from the early discharge service and then, as required, up to 2 weeks.

Participants Purposive, maximum variation sample of 23 mainly older, retired patients admitted to hospital with an acute exacerbation of COPD in 2005. 14 patients listed as receiving EDS, and 9 listed as refusing EDS.

Design Qualitative analysis of audiotaped, semistructured, face-to-face interviews.

Setting Economically deprived inner-city borough in England.

Results (1) Negotiation and consent. Patients had little recall of being approached to join the scheme. They often felt they had been discharged from hospital before they were ready. They were often unable or unwilling to negotiate timing of discharge with hospital staff. (2) Process of discharge from hospital. Patients experienced difficulties with transport home and supplies of medication. (3) Life at home after a hospital admission. Resuming life at home after an admission for an acute exacerbation for COPD was difficult. Not all patients found the home nursing component of the service helpful.

Conclusions Early supported discharge with domiciliary care is a model that ought to promote a more equal partnership between patient and healthcare, but this did not appear to be the case in practice.

  • Pulmonary Disease, Chronic Obstructive[MeSH]
  • patient discharge [MeSH]
  • hospital at home
  • patient-centred care [MeSH]
  • qualitative
  • length of stay [MeSH]
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Transferring care from the acute sector nearer home is regarded as a mainstay for reducing health service costs. Chronic obstructive pulmonary disease (COPD) is a prime target for moving care out of hospital—the condition is responsible for approximately a million hospital bed days per year in the UK,1 and systematic reviews of trials of hospital at home or early discharge schemes for COPD suggest they are safe and may be cost-effective.2 3 Such schemes are common. In the UK, 44% of respiratory units had an early discharge scheme in 2003.4 5 However, while there is reasonable quantitative evidence about the safety of supported early discharge and hospital at home schemes, little is known about patient views about this model of care in COPD.6 We present the findings of a qualitative study of patients about a respiratory early discharge service (EDS) in a deprived inner-city borough in England.

Methods

Early discharge service

The early discharge service (EDS) was established in 2004 after a 2-year pilot scheme. The service was provided by four nurses with experience in respiratory care, based at a chest clinic attached to the acute care hospital.

All patients admitted to the hospital with an acute exacerbation of COPD and resident in the local borough could be considered for the scheme, which aimed to discharge patients within 3.5 days (compared with the standard length of stay for COPD in this hospital of 9.5 days). After discharge, patients were visited at home daily for 3 days and then, as required, up to 2 weeks. Home visits involved clinical assessment and checking that medication was being taken appropriately. Patients had to give informed consent to receive the service.

Sampling and interviews

After obtaining local research ethics committee approval (East London REC Ref. 04/Q0511/55), we identified all COPD patients offered the EDS between January and June 2005. We pursued purposive sampling—including patients who had declined as well as those who had accepted the service, and men and women of different ages and ethnicities. Patients were approached by letter and invited to attend a face-to-face interview at home or elsewhere, if preferred.

A single researcher, previously unknown to the interviewees, conducted semistructured interviews using a topic guide informed by previous research and previous discussions with hospital staff (see appendix 1). The guide prompted patients to talk about how they were approached to participate in the EDS, their most recent hospital admission(s), their discharge from hospital and their subsequent home care.

After piloting, interviews were conducted with participants in their native language. Interviews lasted 30–60 min and were tape-recorded and transcribed (after translation into English as necessary). Transcripts were checked against original recordings for accuracy. Interviews continued until data saturation was reached.

Analysis

A grounded theory approach was used to analyse data from the interviews. Two investigators read transcripts independently and repeatedly and familiarised themselves with the data. Open coding (with no previous assumptions made about the data)7 was undertaken by analysing each transcript line by line. Two researchers identified concepts and themes independently. The “constant comparative method” was used to refine emerging conceptual categories through comparison and searching for deviant cases.7 8

After coding, a series of thematic codes was agreed. These codes were discussed with research team members and revised as appropriate. Transcripts were imported into QSR NUD*IST N6 software and data were further organised by applying agreed thematic coding to each transcript.

A third investigator independently validated the analysis by studying a random sample of half the transcripts. This process resulted in confirmation of some themes and modifications to others. Finally, the researchers developed a narrative account arising from the themes.

Results

Forty-five people documented as accepting the EDS were approached for interview (14 agreed and were interviewed, 18 did not respond, 4 refused, 7 were too unwell, 2 had died). At interview, 2 of the 14 said they had not received the service.

Thirty-eight people were admitted over the same period who were documented as refusing the EDS (9 agreed to be interviewed, 21 did not respond, 7 were unwell (of whom 2 were back in hospital and 2 had mental health problems), 1 had died). At interview, it transpired that one of the patients documented as refusing the EDS had received it.

Characteristics of the 23 patients interviewed and included in the analysis are given in table 1. Most of the patients were frail and had other chronic conditions. Many described lives that are severely restricted by respiratory disease. Themes arising from the interviews were (1) negotiation and consent (including the invitation to participate in the EDS and timing of hospital discharge), (2) process of discharge from hospital and (3) life at home after a hospital admission (including the experience of EDS nursing care at home).

Table 1

Characteristics of COPD patients interviewed

1. Negotiation and consent

Many patients interviewed lacked a clear recollection of being invited to participate in the EDS. Patients who received the service reported being introduced to the nurses from the EDS in a variety of ways in hospital through referral by their respiratory consultant or by nursing staff.

“I was not very clear about when I would be going home because there were different people saying different things.” (80-year-old woman, accepted EDS)

Int: “Did any of the nurses at this…ask you…if you would leave and go home [early]?”

Patient: “No.” (53-year-old woman, listed as having ‘refused’ the EDS)

However, some patients were more aware of the service:

“They've got, erm, a system in general called, erm, early, early discharge. You can go earlier if you have what they call respiratory nurses at home.” (76-year-old man, accepted EDS)

Timing of hospital discharge

Interviewees described their most recent hospital admission or admissions for COPD; these lasted from 2 to 9 days. Among both those who had accepted and those who had refused the EDS, there were some patients who described being discharged from hospital before they were ready.

“And they kept me in for 3 days and sent me home erm, I was back again in 4 days but I think they sent me off too quick…I picked up an infection so I was back in …” (76-year-old woman, accepted EDS)

“I wasn't ready but I wanted to get out…but you know but, erm, when I come home I thought I was dying a couple of times.” (71-year-old woman, accepted EDS)

Many of the patients, including those accepting and refusing early discharge, felt unable to negotiate, or did not consider negotiating, the timing of their discharge with the hospital team.

“I wanted to stay a little while longer…I wanted them to look after me for at least for another 2–3 days …But I couldn't tell the doctor …. They'll say then ‘Why don’t you want to go home?' Then what would I say?” (71-year-old-man, accepted EDS)

For a few patients, negotiation about the timing of discharge appeared to work mutually acceptably:

“A couple of times they've had to come in and say, um, ‘Would you mind going home, we've got an emergency?’ ‘No I don't mind going home,’ because they've been very, very good to me” (70-year-old woman, accepted EDS)

2. Process of discharge

Hospital discharge was rarely smooth or quick (both for those who had accepted and those who had refused the EDS). For those accepting the EDS, firm arrangements regarding the anticipated role of the respiratory nurses were sometimes lacking. A common theme at this stage was of difficulties both with the hospital transport service and with waiting for medications to be dispensed.

“My son comes and gets me. I never bother with ambulances cos they take all day …. And, erm, I know they're busy, so my son has time off to come…and get me.” (71-year-old woman, accepted EDS)

Int: “How did you get back home?”

Patient: “Well stuck me in a wheelchair chucked me out the front and got a cab with the wife like.” (61-year-old man accepted EDS)

“There is always a four, five hour wait …[for medication]. [Sometimes]… I, I'll come home and whoever brought me home, me son or me daughter they'll go back [to the hospital] and get it.” (70-year-old woman, accepted EDS)

On one occasion, a frail patient described returning to the hospital by bus on the evening of his hospital discharge to collect discharge medications that had not been ready at the time of discharge.

3. Life at home

A common theme emerged of difficulty being at home after a stay in an acute care hospital ward for exacerbation of COPD.

“Might be boredom, just feel tired all the time. I just lay there…now I just can't liven up. I don't make beds properly and I eat easy ready meals. Earlier on I could clean, make beds, cook a bit more…I can't go out alone”. (80-year-old woman who accepted EDS)

“They forget that when you're in hospital you're on oxygen all the time, you don't have to do a thing, you've got your food fetched to the… bed, they help you shower…everything's done.…then suddenly a week later they say ‘Oh you're fine now, your breathing's great.’ Well of course it is, you've done nothing…, And they send you home, and you come home and you've got to start” …erm you gotta see to yourself.” (76-year-old woman who accepted EDS)

Experience of EDS care at home

While patients generally talked at length about their experiences in hospital, often giving elaborate accounts of the facilities and care they received, they had much less to say about home care. There were varied views; patients were divided into those who felt nurse visits were beneficial and those who felt that home care contributed little.

“Just to come in on the first few days like she did… I would prefer that to happen …just for the first week that you're home from hospital… it gives you…more confidence as well.” (76-year-old woman, accepted EDS)

Patient: [Describing previous admission when the EDS team were involved] “I've done that before, I've done that before. The nurses…you know follow me home, yeah, yeah, yeah.”

Int: “And what did you think of that?”

“Well, it was bad…when they come in they don't do nothing, you know what I mean.” (80-year-old woman who had refused the EDS at her most recent admission)

Some patients felt the EDS team was unnecessary because they would be able to care for themselves. This was indicated by a man asked if he would have liked the service:

“I can't see any point because, er, as far what I can say, if I get my medications and if I'm looking after myself properly an that's I,.…maybe a fortnight or once a month if they [respiratory nurses] want to come and see me and give me their advice I don't mind …” (69-year-old man, refused EDS)

In general, patients' comments strongly suggested that they adhered to the “old” view of care as two distinct entities—“care in hospital” or “care at home” rather than as a seamless episode of care spanning home and hospital for a particular episode of illness.

Discussion

Summary of findings

This qualitative study of patients with COPD admitted to hospital after an acute exacerbation illustrates three themes: negotiation and consent around the timing of discharge, the process of discharge from hospital and life at home. Each of these is related to a stage in patients' care and each could be fraught with difficulties. A common theme among patients (both those who were recorded as having “refused” and those who had “accepted” the EDS) was that they did not recall being introduced to the scheme, and although they often felt that they had been discharged from hospital before they were ready, they were generally unable or unwilling to negotiate with hospital staff about the timing of their discharge. In our study, organisational issues around the process of hospital discharge hindered the perception of seamless care between hospital and home. Resuming life at home after an admission for an acute exacerbation for COPD could be difficult. Although some patients found the respiratory nurse visits to their home useful, others did not perceive these visits as beneficial.

Limitations

This is a relatively small study based on recipients of a single EDS in an inner-city acute care hospital in a deprived area. They are however likely to reflect the generality of patients receiving early discharge schemes for COPD.3 4 Many patients interviewed for this study had had a number of previous hospital admissions for COPD and were “experts in their own condition.” Many of the patients we approached were not available for interview (although only a few declined outright). It is possible that patients who felt aggrieved about their care were more likely to respond. However, response patterns were similar among our two groups of patients and the themes we have highlighted remain important, emanating from patients' own views about their care.

The nature of a qualitative study is not to provide quantitative assessments but to map an area—to indicate important concepts and ideas that can later be tested quantitatively and to add richness and depth to quantitative accounts.8 In this study, we are indicating important patient-based themes (derived from a detailed qualitative analysis of interview transcripts) that we believe are currently missing from the positive quantitative assessments of early discharge for COPD care published. The process of deriving themes from patients' accounts of their care is subjective, but we took care to ensure that the well-recognised methods we used were rigorously applied and the three investigators worked independently to validate each other's findings.

It has been found in some cases that hospital performance in satisfaction ratings (as measured by patient perceptions of care) is related to characteristics of local populations. Patients from relatively ethnically diverse local populations where there is high population turnover, deprivation and inequality tend to give lower ratings of care. This finding may also be of relevance in the views expressed by our participants, and it is possible that more positive findings would have been achieved by sampling from wealthier populations.9

Strengths

Most trials have not investigated in detail the acceptability of early discharge schemes to patients. Outcomes investigated have tended to be clinical2 3 10 or organisational.2 3 Early discharge schemes have been pronounced “safe” because no difference has been found in short-term clinical outcomes. Only one other published study has looked in depth at patients' perceptions and experiences of early supported discharge for COPD. Schofield et al11 reported “overwhelming endorsement” for an acute respiratory assessment service. However, only patients registered with the service who responded to a postal survey were interviewed, and it is not clear whether the interviewer was identified with the service. In 1993, Small and Graydon12 reported a qualitative study of patients hospitalised with COPD in Canada, finding they experienced uncertainty around managing home and self-care after discharge.

Conclusions

Accounts by these frail, ill, elderly patients of their inability to negotiate their preferred modes of care with healthcare providers in a deprived area of the UK are important. These schemes aim to provide expert care while allowing patients to “enjoy” the benefits of life in their own home. The spread of these schemes is supported by evidence of a reduction in direct healthcare costs in some cases.2 This, coupled with a supposed increase in patient satisfaction, is thought to result in a “win–win” situation.

However, we suggest that this may not always be a win–win situation. This new model of care has been widely introduced with inadequate attention to patients' views. COPD affects older disadvantaged persons disproportionately and enhanced efforts should therefore be made to ensure that patient voices and choices are respected.

Our study has implications for practice: particular issues were raised about organisational arrangements for transport and for medications.

However, other questions require exploration. Do patients recognise EDSs and their objectives? Are patients able to give informed consent to such services? Are there practical problems with transition of care from hospital to home? Can COPD patients negotiate arrangements that enable them to manage their chronic condition? Early supported discharge is a model that ought to promote equal partnership between patient and healthcare provider; however, in this study, such equal partnerships did not appear to be operating in practice.

Appendix

Outline Interview Topic Guide for COPD Discharge

Involvement of patients with their arrangements for leaving hospital. Reasons for accepting or refusing the option of going home early

  • Q When was the last time you were admitted in hospital? What was the reason for going to hospital?

  • Q Normally how long would you stay in hospital when you have a chest flare-up? How many days did you stay in hospital the last time that you were admitted?

  • Q During your last time at the hospital, when did the nurse tell you that you were going home? What did the nurse tell you about the arrangements for going home from hospital?

  • Q Did the nurse ask you if you would like to go home early? Did you agree or disagree? Why?

  • Q How much were you involved in the arrangements for leaving hospital? Were the arrangements satisfactory?

  • Q If you were offered the chance to go home early the next time you were in hospital, would you accept? Why?

Views and satisfaction with your hospital stay

  • Q Roughly if you can remember, how many times have you visited the hospital in the past year because of your chest?

  • Q What were your views, feelings, experiences about the amount of time you spent in hospital this time and previously?

  • Q What would you prefer—to stay in hospital longer or leave early? Why?

Your views and attitude to care in hospital and at home

  • Q Can you tell me (list) who the staff were who were involved in your care, in hospital and/or in home?

  • Q What information was given to you about your care in hospital and at home by nurses?

  • Q What options or choices were you given about your care?

  • Q Was the information easy to understand?

  • Q What aspects of care did you like or dislike in hospital?

  • Q What were your needs after you left hospital?

  • Q What was your experience of receiving care from the nurse visiting you at home? What did you like or dislike about it?

  • Q At home are you looked after by somebody or do you manage by yourself? Family member? Friend? Carer from the social services?

  • Q Does the person caring for you live at home with you or do they visit? How much time do they spend looking after you?

  • Q What do you like the carer to do for you? Are they able to meet your needs? Are you satisfied with their care?

  • Q What else would you like to be improved in your care that you receive either from the hospital staff or your carer?

  • Q Where would you prefer to receive care in the future, in hospital or at home?

Is there anything else you would like to mention about your hospital care, or the plans, for you to go home from hospital?

Thank you.

References

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Footnotes

  • Funding Funding was obtained in part from the DH NHS R&D NCCRCD Programme (SJCT) and in part from the local NHS through a direct grant from the Strategic Health Authority.

  • Competing interests GW was employed by the NHS in the area during the period of the study.

  • Ethics approval Ethical approval was obtained from the local research ethics committee.

  • Patient consent Obtained.

  • Provenance and peer review Not commissioned; not externally peer reviewed.

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