Characteristics of study participants
Meaning saturation of themes was reached with 22 interviews. Participants’ characteristics are summarised in Table 1; the mean was age 85 years (range 71 to 98) and frailty ranged from mild to very severe (CFS 5 to 8). Most participants (n=19) were interviewed alone, and three quarters (n=17) used English as their first language. One quarter (n=5) were living with dementia. Interviews lasted 18 to 74 minutes.
Table 1: summary characteristics of study participants
Variables
|
Participants
(Total: 22)
|
Age group (years)
|
|
65-74
|
3
|
75-84
|
7
|
85-94
|
10
|
95+
|
2
|
Clinical frailty score
|
|
5
|
3
|
6
|
12
|
7
|
6
|
8
|
1
|
Cognitive impairment
|
|
Living with dementia
|
5
|
Sex
|
|
Female
|
15
|
Male
|
7
|
Ethnic group
|
|
Asian
|
5
|
Black
|
1
|
White
|
16
|
Having limited or no English
Using English as additional language
|
2
3
|
Living arrangement
|
|
Living in own home
|
21
|
Of those living in own home:
Living alone
Living with partner
Living with other generations
Receiving social care
|
11
8
2
12
|
Living in residential care
|
1
|
Interview location
|
|
Own home
|
3
|
Telephone
|
1
|
Hospital
|
18
|
Interview participants
|
|
Alone
|
19
|
Accompanied by relative
|
3
|
Main results
Most participants were able to express specific outcome goals, having attended the ED with these in mind. Core categories of Autonomy and Functioning were subcategorised respectively as ‘information, control, and security’ and ‘physical, psychosocial, and relief’ (Figure 1). A substantive proportion of the dataset is presented to illustrate all higher-level domains and most sub-themes; in the interests of brevity, not all data is presented. Many topics were closely related and therefore the margins between categories were indistinct. One theme suggested by a lay research partner (feeling safe from harm by others) lacked interview evidence but was included with unanimous support from the PPI Forum.
Autonomy
Information
Receiving the desired information
Participants had substantial life experience and were very familiar with their diagnoses, having adjusted to living with multiple problems. They needed to feel heard and understood, and to have their life and health experience acknowledged. They expected clear communication with active listening and wanted to be the focus of professionals’ attention rather than their notes or computers. Participants were frustrated when their information goals were unmet, but often tolerated this perhaps through empathy with busy staff:
It seems that questions are left unanswered. They're so overworked though you could understand it. Not being able to spend as much time with you as you like but there you go.
(Participant 6, CFS 6)
Understanding problem severity
People wanted to know what problem was causing their symptoms and wanted to leave the department with a clear plan for its rectification. They were concerned about their symptoms, and sought reassurance through understanding their problem’s potential trajectory:
I knew things weren’t right, but I didn’t know what was wrong. I have had sepsis and they thought they were going to lose me, and since then I’ve always been a bit frightened when I haven’t been well. I just wanted somebody to reassure me that everything would be all right.
(Participant 18, CFS 6)
Security
Feeling safe with health problems and Feeling safe in living place
Nine participants were living without professional care support, and were afraid of becoming unable to manage their daily routine. They feared accidents around the house attributed to ‘clumsiness’ or ‘forgetfulness’. Participants sought to feel safe at home, through help from others or through adaptations to their routines:
My fear is that I can’t get there quick enough when things go wrong, because I can’t move, and that frightens me. I fry my bacon now, I don’t grill it – because, well I don’t want to set that on fire again. Fire frightens me more than anything else.
(Participant 1, CFS 6)
Participants frequently had firm insight into their frailty, knowing themselves to be vulnerable to further health problems. They were aware of their deteriorating health and increasing dependence on others and were afraid of sudden illness following previous experience affecting themselves or loved ones. Those with more advanced age or greater degree of frailty shared existential concerns:
She does worry about what’s going to happen because she always thinks that she’s going to die soon. What’s going to happen to me? How is that going to happen? Will I be in pain? Will God take me to a good place or a bad place?
(Participant 21, CFS D7, relative translating)
Being able to stay at home
Despite concerns around physical safety, participants generally regarded their home environment as sanctuary, and hoped to stay at home rather than be admitted to hospital. Nearly all participants had been reluctant to attend the hospital, and some had consciously opted to tolerate symptoms and delay seeking help. Some participants had tried to ‘sleep off’ their problem in the hope that symptoms would resolve, fearing the unfamiliar processes and places at hospital or the potential diagnoses they might receive:
It felt as if I were going to pass out and collapse. I thought I were going to fall. I thought oh, I shall perhaps be all right in the morning. I thought I might sleep it off and feel a bit better. But I didn’t. I wasn’t all right.
(Participant 7, CFS 5)
Feeling safe from harm by others
This theme was included based on lay partner advice that affected people may not feel able or safe to discuss topics relating to abuse with researchers or healthcare professionals. Phrasing aimed to have resonance for those who may fear harm from both familiar and unfamiliar people.
My concerns are mostly for people who are not in such a supportive home, who live alone or who are overwhelmed by their situation: I can think of many reasons why someone would not answer freely.
(PPI review round 7, emailed comments)
Control
Making decisions as desired
Many participants’ information requirements related to their need to participate in decisions about the diagnosis and management of their problem. Most wished to take an active role in their healthcare and to be involved in decision-making or choices about transfer or treatment options.
I knew I would have the basic examination. And I thought I might want a brain scan and then talk about the official diagnosis.
(Participant 3, CFS 6)
Some participants preferred important decisions to be made by their clinical team or their relatives, but still wanted to be kept informed about decision outcomes and what would happen next. This was perhaps due to them feeling pressured to make choices or concerned not to make mistakes. Participants were often cognisant of the risks and potential complications associated with healthcare treatments:
They said ‘how do you feel about going to the hospital?’ So I said, ‘I’m no good as I am at home’. I was a bit apprehensive to come in here because of the Covid business but thought well, if I don’t, I’ve got to wait till tomorrow to ring the doctor’s and then it could happen again.
(Participant 7, CFS 5)
Some participants were frustrated when they felt professionals were withholding information, whereas others did not wish to know the full clinical details. They observed the importance of tailoring the consultation around individual preferences:
You’ll only have confidence in professionals if they are honest with you. Lying by omission is just as bad as telling a straightforward lie, you know. The option for blunt information should be there … I don’t think everybody is of a mind that can accept it, but I think the option should be given.
(Participant 13, CFS 6)
Relatives being involved as desired
Many participants received support from friends, neighbours, or relatives. Some felt it important that these ‘important others’ were kept updated in all aspects of healthcare and may have deferred decision-making to their partners or children. Others did not want their important others ‘bothered’ unless there was crucial information, and some did not want them contacted at all. Involving important others in consultations often helped to overcome communication barriers:
Of course it is important to contact your relatives. You are worried you will lose control. I wish people spoke the language I speak. I find it hard to tell people what’s going on.
(Participant 20, CFS 7, relative translating)
Records and medications being correct
Participants reported feeling insecure when their routines were changed to conform with system constraints, perceived as ‘rules’. Medications were a frequent source of worry, particularly when participants did not understand the rationale for alterations. They were frustrated when information gathering was duplicated. There was an assumption that computer systems enabled seamless information transfer between clinicians, and annoyance when communication proved inefficient:
The nurse who spoke to me from the ambulance service had said I needed to go to hospital, so I’d got my bag and tablets ready by the time they got here. But I had to repeat the whole story of what had happened and everything, and they said no we won’t take you.
(Participant 18, CFS 6)
Functioning
Physical
Being able to care for oneself
Many interview participants were living alone in their own homes and had learnt to adapt to deficits in function. Hospital attendances were often triggered by sudden and sometimes small changes in health, living environment, or routine. Participants needed to maintain their independence:
Even though I walked slowly, at least I was able to do things for myself. Whatever little that is, at least it gives me a little bit of independence. Now I cannot stand up or do anything for myself. Not been able to shower, not been able to go to the loo. So, I want to get back on my feet. I want that to return to normal at least.
(Participant 20, CFS 7, relative translating)
Being able to get around
Independence goals persisted even once participants’ frailty had progressed to them developing dependency on relatives or carers. They were aware of the effects of relatively minor problems contributing to poor global function, and used these insights to form specific outcome goals:
I need a frame to be able to get out of the hospital. I have got to be able to walk.
(Participant 2, CFS 5)
Having enough ongoing support
The discharge preparation phase posed a significant worry for many participants, who felt unsure of timeframes towards discharge or whether they felt safe to go home. Many participants had increased care needs due to gradual or sudden inability to manage their daily routines. They expected information to be passed to their primary care professionals, and wanted follow-up appointments and visits to be arranged:
Obviously they’ve passed it on – I’m going to see the physio tomorrow at the community hospital, to assess me, and see what they can do to help me. Whether I’ll need exercise or manipulation or whatever.
(Participant 2, CFS 5)
Psychosocial
Being able to care for loved ones and Not being a burden on others
Participants were concerned about the effect of their situation on other people. Those living with lesser burdens of frailty (CFS 5-6) were often concerned to maintain independence and ability to care for others whether for their partner or pet. Their loved ones often depended on them, with their welfare presenting a barrier to participants seeking emergency care themselves.
If they say to me that you’re staying overnight, the wife’s going to be struggling tonight. She can’t lift the kettle to pour a cup of tea, you know. I mean she’s in the kitchen and I’m sat in the lounge and she’ll call me to pour her a cup of tea because she can’t do it.
(Participant 7, CFS 5)
Those with more severe frailty (CFS 7-8) were often concerned about burdening their loved ones:
I still prefer it at home, but what’s the point of going home in this state when I’m a headache to myself and everyone else? Everyone is so worried about me; I’d rather get better than go home.
(Participant 20, CFS 7, relative translating)
Relief
Having relief from illness or injury and Feeling better in general
Many participants believed that their chronic illness or disability would not improve. As well as often having severe pain, participants experienced symptoms which were different to characterise and describe, causing them to feel ‘generally unwell’. Some were unsure what was happening to them or what treatments might be possible. They attended wanting ‘to feel better’:
I don’t know what’s causing it. I don’t know what they can do now, to be honest. I feel as if I need something to take it away. Whether it’s some medication or something, I don’t know.
(Participant 7, CFS 5)
Having relief from low mood or worry
Some participants suffered with mental health symptoms which affected their wellbeing and interactions with others. Others were worried about their general health or the potential outcomes from their acute problem:
[Translator] I know that I am going to die eventually. I am getting to that age. But I still worry about it. Some days it can make me feel a bit down. Then it can affect my sleep as well, and that can affect my eating as well.
(Participant 21, CFS D7)