From observation at baseline, we characterised care delivery on both wards as competent, caring and broadly responsive to people’s expressed needs, although time to respond was slower during busy periods (early to mid-morning and during mealtimes). There were staff who were particularly sensitive to the emotional needs of people with dementia, and used their knowledge of the person to anticipate and respond to those who were unable to communicate verbally. Openness to, and engagement with, families was distributed among all staff, from HCAs to ward managers, a collaborative, negotiated response to relatives and caregivers being an expectation of everyone. These features of care delivery contributed to a positive experience of care from patient case studies on both wards (six at baseline and five over the course of PIE implementation).
Experience of care
Without exception, patients and relatives at baseline described their experience of care in positive terms: staff were kind and responsive when patients needed assistance; and relatives indicated that staff made themselves available to discuss their concerns, kept them informed about what was happening and involved them in decisions about the future. In the detail, we get a more nuanced picture of both experiences in context of what was viewed as‘good’and variability in responding to preferences and needs.
Warmth and responsiveness
The characterisation of care delivery on both Seaford wards as‘warm, sensitive and task focused’was mirrored in the case studies. From observations and‘conversations in the moment’, patients conveyed that staff were responsive to their requests for assistance but that they had also learned how to get a response, for example by‘seizing the right moment’:
Well, I wait till I think they’re not busy. If they’re rushing, rushing backward and forward, I keep quiet. But if they’re just wandering, I’ll say,‘nurse’, like that and they come over. But if I see them running then I wouldn’t because I think, well they’re off to do something important.
Rose, Poplar Ward
Lily, moved from a bay to one of the single rooms, similarly expressed the sense of being patient and seeking acknowledgement that she looked for help only when it was‘important’:
I press my buzzer and if they don’t come there and then, I wait a bit longer and I have another press. Because I must realise they’ve got work elsewhere. So you just sit and wait until they can get to you. But it’s really . . . important you keep your finger on the buzzer; but I wouldn’t do that if it wasn’t important. Lily, Poplar Ward
Iris had also moved from a bay to a single room–not of her choosing–and she had developed a meticillin-resistantStaphylococcus aureus(MRSA) type infection. Her daughter said that Iris had been very upset and agitated about the move but had settled after a while. Now she considered her mother to be content on the ward:
She was very frightened about coming in to hospital. It’s her one dread–being in hospital. I know it’s a terrible thing to say but this has actually done her good because it’s taken away her fear of hospitals now.
Iris’s daughter, Poplar Ward
John’s daughter-in-law talked about the lack of staff time spent directly sitting with patients. As a HCA in a residential care home, she acknowledged the importance of spending time with people but viewed this as requiring more staff on the ward as the nurses were so busy:‘they’re always darting about quite a bit’,
although they‘always they do go out of their way to make sure that the patients are comfortable’and
‘they come and make sure that we’re OK [relatives]’.
Other patients: source of disturbance, friendliness and reciprocal help
Being on a ward meant that proximity to other patients was a source of convivialityanddisturbance. Women interviewed considered that‘friendliness’was important. They distinguished between liking to sit and talk with people,‘being sociable’and being‘best friends’:‘you get friendly . . . it’s not a good thing to try to make friends because it doesn’t last’. Daisy described her relationship with other patients as
‘vaguely to talk to’, but she had become good friends with Bessie. Conveyed in her account is a level of understanding and acceptance of others’disorientation:
Bessie and I are quite good friends now . . . but I still haven’t found her husband though [Daisy laughs] . . . She does get in a muddle sometimes looking for Fred. She says:‘where’s Fred?’
Daisy, Crane Ward
The conversation with Daisy was punctuated with her interjections to Bessie:‘are you all right, Bessie’;
‘Careful Bessie . . . she doesn’t look safe’[to the researcher].
Rose liked to sit with people and talk,‘getting on’but not being‘close friends’. She was sanguine about other patients calling out:
You can look around at everything and think,‘oh I wish they wouldn’t do that’. I don’t like the way they do that . . . but that’s only your personal opinion. I can’t judge what all these people think . . . There’s a lady, she does a lot of shouting . . . I think she’s a very disturbed person . . . but if you pull the clothes over your head and don’t listen, it’s OK . . . when they moan and groan there’s a reason for it . . . they’re unhappy . . . with myself I’m perfectly happy as things are [Rose laughs good-humouredly].
Rose, Poplar Ward
Lily had been moved to a single room from a bay because of disturbance from other patients, who she described as‘rowdy and grumbly’. She felt better on her own:‘it’s a rest’[being in bed].
Men interviewed appeared less interested in the potential for conviviality and social interchange. John was moved to a single room: he was unable to sleep because another patient was shouting out during the night. His daughter-in-law would have preferred that he stayed in the bay for the company but understood that he preferred to be on his own. He found enjoyment in looking at the birds through the window; enjoyment in nature replicated how he spent time at home. Robert was happy to sit with people in the bay and found comfort in the routine:‘I was in the medical corps in the war . . . it’s got to be run as a routine’.
Going home
Everyone wanted to resume life as before. Apart from Rose, who was to return to her care home, patients’ destinations were uncertain. It was not always clear from patients how much involvement they had with the decision about planning for discharge. In part this reflected memory difficulties. Rose hoped to return to her care home but indicated that she did not know when this would happen; her daughter reminded her that she was being discharged within a couple of days. There was a sense from patients’talk that there had been discussion but that, ultimately, the decision was not in their hands; it rested elsewhere, not only with professionals but with close relatives. Thus, although Robert hoped to go back home, his relatives had talked to him of going into care:
I know they’ve been thinking of me going into another place where I could talk to other people and that . . . but . . . in some ways I would and others I wouldn’t.
Robert, Crane Ward OUTCOMES OF PERSON, INTERACTIONS AND ENVIRONMENT
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Lily was not sure how much longer she would be in hospital except that the doctor had said that she would be ready when she could walk a little way, adding,‘they know better than me’.
Relatives, on the other hand, described how they were very much involved in the decision about discharge, a process perceived as emotional and conflicting in reconciling their relative’s wish to resume life as before with their deteriorating health.
Did Person, Interactions and Environment make a difference to patient experience?
The five patient case studies following PIE implementation were purposively selected to include those who were frailer as critical exemplars of patients perceived to be more challenging and therefore particularly testing of progress made. All had limited ability to communicate verbally, although this varied depending on the time of day, and they deteriorated over time.
Experience of care
Similar to baseline, relatives assessed care as very good: staff were described as kind and responsive, and available to discuss the carer’s problems and concerns. Emily’s daughter visited her mother daily:‘If I only mention something to the nurses, it’s dealt with’. Acknowledged, too, was the significance of staff caring for her mother:‘she doesn’t take much in. I don’t think they could do much more for her’.
Observation and conversation with patients revealed a deteriorating trajectory of inter-related physical and cognitive impairment. Frail when first encountered, these people alternately conveyed frustration at others not responding to them in relation to their conception of reality, and derived pleasure in the moment from encounters with others, including the researcher.
It was in respect of these patients that understanding of, and emotional engagement with, them‘in their world’was not consistent across staff on either ward, even though they generally acted with warmth and kindness in carrying out day-to-day tasks.
Dorette was French in origin but had lived in England for decades; she was often distressed, wanting to get to the train station, and had reverted to her first language. She called out frequently to be taken to‘Gare St Lazare’, expressing anger and frustration in the absence of a response. Although some staff would talk with her about her life, others would ignore her. She evinced pleasure when staff spoke to her in French, smiling, apparently at their faltering efforts (including the site researcher’s) with the language. At other times she became angry when asked to do a task (e.g. changing her clothes when wet) as it would make her late for the train. Annie often shouted out in protest during routine observations or personal care work but was comforted by touch–holding her hand and stroking her hair–when distressed. Connie often expressed her desire to go home, get off the ward and catch a bus back home. When a staff member sat with her, she talked animatedly about the place where she grew up and had spent all her life and to where she talked of returning; she never spoke of the care home she had lived in for some time.
From observation, staff at follow-up appeared more responsive to patients’embodied action as meaningful, and sought to address care needs. Thus, Emily, exemplifying the‘unco-operative’patient, repeatedly tried to pull out the intravenous line (for hydration), scratched staff when angry and was reluctant to eat and drink when assisted. Staff would sit with her, and discovered that fortified drinks and dessert were the only things that she would touch. As she transitioned to being unresponsive and sleeping most of the time, the work of‘care’, including that relating to nutrition, hydration and elimination, became increasingly challenging to carry out; comfort through touch seemed all-important. For these patients, responding cognitively and emotionally to them‘in their world’also enabled care tasks to be completed.
These patients, with the exception of Connie, did not take part in mealtimes as‘social events’; either they were too ill and in bed (Emily) or they did not want to do so. Connie was the exception, and she also enjoyed being taken to the dementia café. She was joyous at the music, joined in the singing and conveyed how much she loved being around the children who had come along from the local primary
school. Returning to the ward, she became preoccupied again with getting the bus home and being taken to the bus stop.
These illustrative accounts attest to the challenge of working with patients whose hold on a‘shared reality’ diminished,112even while moments of pleasure and joy were experienced, facilitated through sensory and
emotional engagement with others.
Declining trajectory: physical and cognitive
Cognitive deterioration among these patients was interlinked with physical decline. Within a week of her operation, Dorette was being assisted to walk with a walking frame and described as‘medically fit’for discharge on the ward round. Ten days subsequently, she was‘poorly’, receiving blood transfusions, indicated that she was very tired and wanted to sleep all the time. In conversation with the researcher, she expressed a wish that she‘had wings’to take her home. Unable to stand, even with assistance, she lay in bed or was helped to sit on the chair by the bed. Repeated attempts by therapists to get her up and moving failed, further contributing to physical deterioration. This pattern in different forms applied to other patient case studies. Activities initiated through PIE, such as communal mealtimes, and opportunities for patient–patient and staff–patient interaction, occurred around them and they were too ill to take part. Emily and Annie died in hospital; Dorette and Beatrice were newly admitted to long-term care following 50 and 73 days’hospital stay, respectively. Connie and Beatrice were still on the ward at the conclusion of fieldwork. It was planned that Beatrice would go to a nursing home when a suitable place was found; a different care home placement was being sought for Connie, as she was perceived as too dependent to return to her previous care home.
In summary, at each time point, patients (and close relatives) perceived staff as warm, caring and responsive. Patients were‘forgiving’of staff not always being available when needed, and spoke of choosing an opportune moment to ask for assistance. Ethnographic observation suggested that, apart from busy periods, patients were responded to quickly on both wards when they expressed a need, unlike on some other study wards. For relatives, that staff made themselves available, heard their concerns and addressed them inculcated trust in the care provided to their relative.
Observation indicated two aspects of practice that changed as a result of PIE with a positive impact on patient experience: enhanced sociability and sense of well-being from communal mealtimes; and pleasure and shared memories evoked by listening together at music sessions. For staff, these activities provided opportunities to acquire personally meaningful knowledge of the person to make sense of their behaviour and action and provide appropriate emotional support, realising the meaning of a‘person-centred’ approach in their practice. For people with severe dementia, this‘person-focused’practice was more inconsistent within staff teams. Although all staff engaged with such patients with warmth and care, responding to the emotional needs of those whose sense of a shared reality had diminished required a level of knowledge and skill not shared by everyone–as well as time.