Table 4 Quotations to illustrate living with the consequences of frailty and haemodialysis
From: Living with frailty and haemodialysis: a qualitative study
Individual level |
Variability • ‘It definitely is day to day thing; some days are better than others.’ (Participant 3, female, vulnerable, age 40s). Functional limitations • ‘My bedroom is upstairs, so I only come out from my bedroom twice a day when I’m not on dialysis for two minutes in the morning and the evening. And then I go upstairs and then come out next day. I’m having a difficulty for the stairs.’ (Participant 11, male, severely frail, age 60s). • ‘I can’t raise my right hand above shoulder height. I can’t reach out and pick the hand-wash up, the strain on my shoulder, I just start trembling. The left one’s alright, if I need anything out the cupboard, I have to use the left one. Sometimes when I pick my cup of tea up, I have to support my right wrist with my left arm. If I reach for anything it’s always with the left.’ (Participant 16, male, vulnerable, age 60s). Loss and grief • ‘I just want my normal life back. I don’t know what to expect with everything. It’s too much.’ (Participant 18, female, vulnerable, age 60s). |
Interpersonal level |
Family support • “If I want to go anywhere I can manage to go in the car with either daughters…they always take me to the doctors, take me to the hospital, take me shopping. No matter where I want to go, there’d be one of them.’ (Participant 14, female, moderately frail, age 80s). • ‘My husband is a lot stronger than me; he really is… and when I am not feeling too good he is there. Whenever I am ill like this I want him there.’ (Participant 4, female, severely frail, age 60s). Diminished friendship groups • ‘I was just too social, I had plenty of friends….I am at home now, I don't go out at all. If I have to go out, only for the GP appointment. Otherwise, I prefer to stay at home.’ (Participant 11, male, severely frail, age 60s). |
Organisational level |
Navigating the system • ‘I have got a page full of…appointments. There is always something, I have got to go to the hospital on 27th, 28th and 29th. My three appointments are for different things, and the same consultant won’t see you for different things because one is a diabetic specialist, kidney specialist and one is a something else specialist, so they don't see you for all three anyway.’ (Participant 5, male, moderately frail, age 60s). Lack of time, continuity and consistency • ‘[Therapists] did come but they come one day, and they are there for half an hour and then they are ‘oh well we will see you in three weeks’ time.’ To be quite honest it’s no use nor ornament.’ (Participant 12, male, mildly frail, age 70s). • ‘It ends up being locums, there could be a doctor there, but he is never there, but they have plenty of locums. The trouble with locum doctors is sometimes you walk in, and they haven't read anything about you..’ (Participant 5, male, moderately frail, age 60s). Poor communication between services • ‘[Orthopaedics] were reluctant to operate because they didn’t think my heart could take the strain. So, they set the operations up but then [the anaesthetist] would back out or cancel and that went on for a year and a half. The anaesthetist has the option of whether they chose to deal with that patient or not and they considered me really high risk. So, I would have meetings with them and afterwards it would be 'not yet' and 'in a while' and just keeping me in so much pain. I was on pain killers and a bottle of wine a night and then anything that would numb the pain.’ (Participant 16, male, vulnerable, age 60s). |
Community level |
Accessibility-related barriers • ‘We went to a cafe once, my friend [took me in a] wheelchair. We got to this cafe and there was a small step down, it wasn't big, she went in and said have you got a ramp and [the café owner] said yes, they were hoping to fit one but they hadn't got it, it was more like a half step than an actual ramp, but they assured us they were going to get a proper ramp.’(Participant 8, female, moderately frail, age 70s). Social stigma • ‘I don’t feel like going out, because if you are not well, you can’t get dressed up nicely. I used to years ago I would dress up very nicely, saris and all that.’ (Participant 18, female, vulnerable, age 60s). • ‘The Zimmer frame I use that in the house. I use it when it’s around, [my wife] don't like using it, she never uses it when she is out, she is like me, she doesn't like people to think she is ill.’ (Participant 26, male, severely frail, age 80s). Loss of community roles and connections • ‘This Indian dance, this folk dance with the sticks and all. My neighbours they used to call me, and I joined in. [I stopped] because we moved… it wasn’t the same. Leicester they have only in the club, they don’t have it at home like that… now I can’t, I’m older you see now. I can’t manage it; I get very tired’. (Participant 7, female, mildly frail, age 80s). HD community • ‘The nurses here are ever so nice and if I think about it really the only contact I get is when I come in here [HD unit] and yet I hate what they do to me.’ (Participant 26, male, severely frail, age 80s). |
Societal level |
Challenges accessing financial and practical support • ‘All I wanted was a disabled badge so I could park the car and not have to walk for miles. But the council wouldn't give it to me because I wasn't on disability allowance. The doctors gave me a really good…letter to [explain that I am on] long term dialysis, but they still rejected it. So, I even thought if being on disability allowance is going to give me a badge then I will go on it. So, I went to the office got the forms and everything but … so much mail came through I said to my husband “forget it I don't want this”’ (Participant 10, female, vulnerable age 50s). • ‘The people that are making these [disability] assessments are…not qualified to make significant medical judgement. They do it from a set of questions that they’ve been given, and they follow it religiously…so when you say yes I can, tick. They don’t want to know the consequences of doing that action and the fact that you may be in pain, or you have fatigue or, you know, that you have to then rest for three or four hours or even sleep. They don’t consider those kind of problems, it’s yes or no’(Participant 13, male, vulnerable, age 50s). • ‘I lost a lot of money from social security because I didn’t know that you’re supposed to be getting a single person’s disability money. Nobody’s bothered to look at what you’re supposed to be entitled to or how much you should be getting.’(Participant 6, male, vulnerable age 50s). |