- Pandora Pound, research sociologista,
- Micheal Bury, professor of sociologyb,
- Patrick Gompertz, research fellowa,
- Shah Ebrahim, professor of clinical epidemiologya
- a Department of Public Health, Royal Free Hospital School of Medicine, London NW3 2PF,
- b Department of Social Policy and Social Science, Royal Holloway College, University of London, Egham Hill, Surrey TW20 0EX
- Correspondence to: Ms Pound.
- Accepted 2 June 1995
Objective: To explore which components of care were valued by patients admittedto hospital following a stroke.
Design: Qualitative study using in depth interviews 10 months after the stroke.
Setting: Two adjacent districts in North Thames Regional Health Authority.
Subjects: 82 survivors of stroke taken consecutively from a stroke register, 40of whom agreed to be interviewed.
Results: Patients reported that during the acute stage of the stroke they wanted to put their faith in experienced and trusted experts who would help them make sense of the event, take all the actions necessary to ensure survival, and provide comfort and human warmth during the crisis. In addition to being reassured by the clinical tests and practical nursing help they received, patients valued feeling cared about by the staff. In most cases patients reported that their needs were met; however, the institutional natureof the hospital sometimes obstructed the fulfilment of their needs.
Conclusion: Patients have important psychosocial needs during the acute stage of the stroke, which are often met by hospital admission. Patients gained benefits from their admission over and above those measurable in terms of morbidity or function. They used a combination of criteria to evaluate their care, focusing on the process as well as the outcome of care. Researchers and clinicians should do likewise.
Interviews with stroke patients, 10 months after admission, identified four components of care: being cared about, clinical care, nursing care, and information and advice
Hospital admission meets important psycho- social needs during the crisis stage
Positive aspects of acute care which patients reported should be borne in mind when new services, such as stroke units, are developed
The quality of interaction between stroke patients and health professionals may have an important impact on the recovering person's self esteem
Whether people should be admitted to hospital or cared for at home in the immediate aftermath of stroke has been debated for almost two decades.1 2 3 4 5 6 At first the prevailing belief was that unless it was absolutely necessary, people should be admitted to hospital on medical grounds only, while domiciliary care should be improved so that more patients could remain at home. The arguments in favour of hospital admission focused firmly on the potential clinical benefits, with mortality and levels of disability being the outcomes of interest. Isascs was alone in considering the possibility that less tangible benefits might be gained from hospital admission.7 While it is increasingly recognised that patients have psychosocial needs in the aftermath of stroke, it has recently been argued that these needs may be neglected in hospital.8 Throughout the course of this debate, however, there has been little interest in researching the views of people who have actually experienced treatment for stroke.
An early, qualitative study of stroke patients in a Canadian teaching hospital found that health professionals felt uneasy when dealing with stroke patients because they believed that nothing could be done for them in the acute care setting.9 Hoffman explored the impact of this unease on professionals' interactions with stroke patients and found that communication was often hindered as a result. Indeed, one of the few later studies which explored the attitudes of stroke patients towards hospital admission found that, although patients seemed to respect the technical skills of health professionals, they complained of poor communication, insensitivity, and a lack of empathy.10
More recently, however, a relatively high level of satisfaction with inpatient care has been found, including communication and the personal social skills of staff,11 while a longitudinal survey of patients' and carers' experiences after stroke reported mixed views.12 As part of the latter survey, patients were asked if there was anything about their hospital stay that especially pleased or upset them. About two thirds of the sample reported something positive, most commonly the kindness of the nurses. Under half identified something upsetting, and this again related to nurses, the most common complaint being difficulty in obtaining help with getting to the toilet.
The experience of chronically ill patients within an acute care setting is a relevant area of inquiry, yet it remains relatively neglected.13 This paper reports the findings from a qualitative study of people's experiences in hospital immediately after a stroke. The study attempted to find out which components of care were valued by patients during their acute admission. We considered that a methodology which allowed a free flowing account of patients' experiences, rather than simply their opinions, would yield insights unattainable through the more structured approaches mentioned above.11 12 Qualitative methods are increasingly recognised as an important element in health services research, especially in clarifying the dimensions of care that matter to patients and providing a conceptual framework for analysing them.14
During a period of nine months, survivors' names were taken consecutively from the North East Thames Stroke Outcome Study stroke register when they reached the 10th month after their stroke, and people were invited to take part in an interview. The register contains data on all acute stroke admissions to the four major hospitals in two adjacent health districts in North Thames Regional Health Authority between January 1991 and March 1992 and has been described in more detail elsewhere.15 Those lost to follow up in the study, those who had moved out of the study area, those who were still inpatients at 10 months, and those known to be unable to participate owing to dementia (n=3) or severe speech impairment (n=3) were excluded from the sampling frame. Additionally, because fewer women than men were able to participate, owing to ill health, men were excluded from sampling during the last two months of the sampling period.
For the North East Thames Stroke Outcome Study, patients were followed up at six and 12 months with a range of outcome measures, including the Barthel index,16 the Nottingham extended activities of daily living scale,17 the Nottingham health profile,18 the short form of the geriatric depression score,19 and a patient satisfaction questionnaire.11 Differences in outcome between those who accepted and those who refused the invitation to participate in the in depth interviews were explored using Student's t test, the Mann-Whitney U test, and x2 where appropriate.
For the interviews, people were asked to provide accounts of their experiences, beginning with what happened on the day of the stroke and continuing through to their admission to hospital and their experiences there. Each interview covered the same general areas, but within subject areas the conversation was flexible. Carers were sometimes present during interviews, and their accounts were also included here; since some people had speech impairments, their contributions were helpful and important.
The interviews were conducted an average of 10 months after the stroke. All (except one) were conducted in people's homes and tape recorded. The transcripts of the recordings were then content analysed, which involves reading through the data, identifying recurrent themes, coding them, and organising them into categories. These categories were then systematically compared across the transcripts to refine the classifications or create new typologies.14
Of the 82 people approached, 40 accepted our invitation to participate in the interviews, giving a take up rate of 49%. The sample consisted of 21 men and 19 women. Thirty five were white, three were Bangladeshi, and two were black Caribbean. The mean age at the time of interview was 71 (range 40-87) years. Twenty three people lived in council housingand five in warden supervised accommodation; eight were owner occupiers, two were living in privately rented houses, one person was in bed and breakfast accommodation, and another was staying in her daughter's home at the time of the interview. Thirty nine people identified a main carer, of whom 19 were spouses. Sixteen people lived alone.
Six months after the stroke there were no significant differences between those who accepted the invitation to be interviewed and those who refused, either in terms of disability (using the Barthel and the extended activities of daily living scale) or according to age at time of stroke, age they left full time education, last employment (manual or non-manual), whether they lived alone, housing tenure, sex, or race.20 However, those who accepted were slightly less disabled 12 months after the stroke than those who refused, as the table shows.
COMPONENTS OF CARE
In general, 26 people were positive about their stay in hospital, five were negative, and an additional six were both positive and negative. (Three people were more concerned to discuss their housing problems and their interviews were not used.) Four components of care were identified; being cared about (14 people), clinical care (13), nursing care (10), and information or advice (4). Seven people referred to aspects of care in two categories and two to aspects in three categories.
Being cared about
The feeling of being personally valued and cared about by the staff in the hospital was of great importance to respondents. Such feelings arose from nurses or doctors displaying kindness, warmth, individual attention, encouragement, and other apparently genuine indications that the person had been recognised as an important individual and not “just another patient.” Recovery, then, was atttibuted not only to the clinical skills of health professionals but to the experience of being looked after and attended to at the level of the person as well as the affected body. People were asked if they thought going into hospital after their stroke had been important and if so, why. The following are typical replies:
“Well, I mean people say what they think. I think they made me feel as though I was wanted and I could be looked after. To be--to know that you've got somebody that's caring. You know? Oh I think that goes a long way.”
“Oh the attention they gave me, definitely, and the nurses. Oh definitely.”
“I think the attention you get from the nurses really.”
These interviews suggested that the sense of being respected and valued contributed towards a favourable outcome after their stroke. If this sort of “emotional work” was not in evidence, and particularly if people felt their humanity had been denied, great distress could ensue. One woman felt that the nurses had been so rude to her that, when it laterbecame necessary to be readmitted, she refused despite her family doctor's best efforts to persuade her. Similarly, a husband reported that nurses had been so slow in responding to his wife's calls to go to the toilet that she had to lie in her faeces until the nurses arrived, upon which she was chastised for having soiled the bed. He complained to the consultant, but the flippancy with which he felt the complaint was received only increasedthe couple's sense of humiliation and injustice. Another example of lack of care was in the case of doctors' insensitivity in conveying the diagnosis.
“I had one doctor come over to me and he said, ‘Ah, you've had a stroke.' And he went away. The second doctor came up, he said--he looked at me--he said to me, ‘Lift your arm, lift your leg.' I said, ‘I can't.' He said, ‘You've had a stroke.'… You think, how do they do--and they're so cold at hospitals, you know? ‘Oh, you've had a stroke,' and walk away.”
The people in this sample expected doctors to know exactly what was wrong with them, and in all but three cases their expectations were fulfilled. As one woman said with satisfaction:
“Anyway, she [sister] came over and sent for the doctor, but he was very good. He knew what was wrong with me. He told them exactly what was wrong.”
The acute stage of stroke may be a bewildering and shocking time for a patient, but health professionals have a set response to this crisis. Patients and carers appreciated being able to hand over responsibility to a team of people who could take decisive actions on their behalf. The following two comments illustrate patients' appreciation of the combination of knowledge and expertise that they felt was on hand at hospital and which helped them make sense of the stroke:
“It was the first time I had seen a stroke, I didn't know what a stroke was. And at the hospital they gave me medicine, and exercises, and the doctor was telling me it was a stroke and that slowly it would get better.”
“When you've had that stroke and you need the hospital for their help, the nurses know exactly what to do, the doctors know exactly what to do. The physiotherapist knows what to do.”
Most of those who referred to clinical aspects of care were positive. People generally seemed to have realistic expectations about what acute care after stroke consisted of, with few seeming to foster a belief in a “magic bullet.” For example, one man felt that he would have recovered if he had simply stayed at home after his stroke; nevertheless he appreciated being admitted to hospital because it made him aware that tests were being conducted to find the underlying cause of the stroke and that people were interested in his condition:
“Well I actually think, it does boost you, it does give you that extra boost ‘cause you know people there are trying to help. Whereas if you--presumably, I mean if I'd just stayed at home, hopefully it would have got better of its own accord, but…[PP: How does it boost you?] Well the fact that people are trying to find out sort of why it's happened and, you know, it just gives you that added extra.”
Routine tests seemed to provide reassurance
“They said that she'd had a mild stroke. The scan showed--that it wasn't anything very serious, you know. No, nothing positive shown on all the different scans. And they said that er, hadn't got anything serious and that, should she take it easy, she could overcome it.”
Rehabilitation was generally not discussed in relation to the immediate aftermath of the stroke, but three people were positive about the help they received from physiotherapists at this stage.
With regard to nursing care, some people were thankful because their families were relieved of heavy or unpleasant tasks such as lifting and toileting during the acute stage. The chance to rest and relinquish responsibilities for cooking, cleaning, and shopping was also appreciated. As one person said:
“They did everything for me, just tucked me up in a bed and they used to come and wash me and that, you know, bring me meals up and that….”
Another woman appreciated the fact that she had been washed and cleaned by the nurses, since during the stroke she had become incontinent. The matter of fact way in which the nurses dealt with this lessened her feelings of shame. A few, however, felt that good care was prevented by the inflexibility of the ward regime. Problems could arise if people attempted to introduce their own routines onto the ward. For example, a carer wanted to help feed his wife at mealtimes but was prevented from doing so outside of normal visiting times. Another wanted to help his partner while she was using the commode but was asked by the nurses to leave her alone:
“Because, nobody looked after you more than I did while you were in. I don't need to be asked to leave the bedspace when they put you on the commode. I'd only stepped outside the curtain and--crash--on the floor. It concerns me because although they're rushed around trying to do things and that, it's the care of the patient that worries me….If they couldn't do it themselves, then they should have let me stay there and hold you, not let you fall off the commode.”
These carers felt that their partners were not being cared for adequately in hospital; however, when they attempted to compensate for this lack of care by conducting tasks that they would soon have sole responsibility for at home, they were obstructed by the institutional regulations.
Information and advice
Only four people mentioned information and advice in relation to their acute admission, but of the four who did, three were dissatisfied. One man was trying hard to give up smoking but felt that he was given unhelpful advice:
“I mean I spoke to medical registrars in [the local] hospital, and one of them actually told me to carry around a cut up carrot; she said, ‘Every time you want a cigarette just eat the carrot'! I mean you'd look well walking down [a main road in the east end] with a handful of carrots, wouldn't you?!”
Another felt that he had to “drag” information about his condition out of the nurses and doctors:
“You go to hospital, you've got to ask everything, right, and I'm a worrier. If I don't know what's the matter with me, or don't know what's going on, I like to know the details.”
Finally, one person complained that he did not receive enough advice about his partner's condition; consequently he was not sure whether he was damaging her legs or improving her mobility by encouraging her to walk.
The main reasons stated for non-participation were the effects of ill health, which is not surprising, given the population studied. However, those who accepted were no different 6 months after the stroke from those who refused. At 12 months, those in the interview group were slightly less disabled, yet the level and the range of disability were still fairly high, as the median Barthel and Nottingham extended activities of daily living scores indicate. Given this range of disability and also the age, sex, class, and ethnic mix it is probably safe to assume that a reasonable spread of different viewpoints has been achieved, which in qualitative research is one of the most relevant concerns.14
IMPLICATIONS FOR CARE OF PEOPLE WITH STROKE
In the immediate aftermath of stroke, patients and their families were shocked and frightened. At this point, their expressed needs were to hand over responsibility to experienced and trusted experts, who would help them make sense of the event, take all the actions necessary to ensure survival, and provide warmth and reassurance during the crisis. People appreciated being admitted to hospital because they felt cared about by staff, they gained reassurance from clinical and diagnostic procedures, and they were given support in everyday activities. Patients' needs during the acute stage of stroke will not necessarily be fulfilled only by hospital admission, but if acute care for stroke is attempted within the community, these needs will still have to be met in some way.
Although hospital admission may meet important psychosocial needs during the crisis stage, as time goes on the needs which evolve in the longer term may be neglected in the hospital,8 since it is organised on a model of acute care. As the stroke “career” evolves and the acute stage passes, patients and carers may increasingly desire support relating to rehabilitation, discharge, secondary prevention, prognosis, or domiciliary services. More information is needed about the stages of the stroke career so that care may be tailored to respond sensitively and flexibly to the different stages.
The positive aspects of acute care which patients reported here, such as expertise, support, and reassurance, should be borne in mind when developing new services such as stroke units. However, patients were not uncritical--indeed they highlighted areas where there is considerable room for improvement. Complaints that calls to go to the toilet are ignored, or that spouses are prevented from caring for each other in hospital should be taken seriously. While hospitals may offer hope and shelter in times of distress, they may also be approached with trepidation and it is likely that, for this generation at least, the legacy of large institutions is fairly strong; indeed several people referred to themselves as “inmates” during the interviews.
For some people, stroke leads to drastic changes in mind and body, challenging lifelong perceptions of self and identity.21 As such, the quality of interaction between stroke patients and health professionals may have an important impact on the recovering person's self esteem. Wade suggested22 and Anderson later echoed him,12 that the nurses' input may be crucial: “Nurses are perhaps the most important profession, as they are with the patient throughout the 24 hours of the day. Through their handling of the patient, physically, emotionally and socially, nurses can probably do more good or harm than any other profession.” This was borne out by the findings in this study; most of the “caring about” was done by nurses, yet at the same time several complaints were raised about the quality of nursing care.
IMPLICATIONS FOR RESEARCH
In 1980 Ben-Sira distinguished between two different components of care: the affective, relating to the emotional and personal aspects of care, and the instrumental, encompassing the more tangible, physical caring tasks.23 The affective may be compared with the component we have referred to here as “caring about,” which is borrowed from Parker.24 Previous evidence, which the findings from this study support, suggests that, although the affective and instrumental aspects of care are distinguishable, people seem to draw on both when evaluating their health care.25 Certainly the accounts of these stroke patients suggest that they were reassured by a combination of medical and nursing care and warmth and empathy.
Although patients define care in this wider sense, focusing on the process as well as the results of care, most clinicians and stroke researchers remain concerned only to assess the outcomes of clinical care, using mortality rates and measures of function to do so. McKeown has said that a wide range of responsibilities lie within the remit of clinical medicine, including reassurance, treatment of an acute emergency, cure, care, and comfort.26 This broad spectrum of care coincides closely with the dimensions of care highlighted by patients in this study. If it is agreed that these are important and desirable tasks, then the dimensions of care discussed in this paper should feature more prominently in assessments of outcome after stroke.
We acknowledge funding from the Stroke Association, the Research Unit of the Royal College of Physicians of London, and the North East Thames Regional Health Authority locally organised research scheme and the generosity of all the people we interviewed.