and most have been 3 months or less with the palliative
care service.
Impact of the care-aide intervention
The care-aide model of care resulted in benefits that can
be grouped under four themes: Easing the burden of
everyday living; supporting well-being; enhancing quality
of life and preserving a sense of dignity; and reducing
loneliness and isolation.
Easing the burden of everyday living
The provision of care-aide support was a significant help
to participants trying to manage their daily household
tasks while living on their own. This practical support
enabled participants to retain some degree of control of
their lives and remain in their familiar surroundings.
This support was described by an independent 80-yearold
participant as reducing the burden of daily living:
She’s [care aide] changed my life quite a lot. She’s taken
away a lot of the burdens you know. There’s certain things
you just can’t do. (P40, in-depth interview)
Care aides provided help with transport enabling
participants to get on with life without having to rely on
neighbours or friends for lifts:
It was good; it gave me an opportunity to get out of the
house. She [care aide] was flexible and sensitive to my
needs. If I am not so well, she gave me empathy. (P35 brief
interview)
…and yes, she’s [care aide] taken me there [Dermatologist],
and it doesn’t take long and on the way back we call in
and do a bit of shopping. So really and truly she’s been a
godsend. (P40, in-depth interview)
Care-aide support also had a positive influence on
participants’ routines, in particular at mealtimes. Participants
felt encouraged to eat because someone had taken
the time to prepare a meal for them and the care aides
provided company during the meal. One female participant
who was unable to chop vegetables herself said:
[Care aide] is marvellous. I would say sixty percent, she’s
helped. She made me a big pot of soup one day. We
bought these vegetables, I asked if she could help chop up
the vegetables, and she said: ‘Sit down and make a cup of
tea for yourself. I’ll make you the soup…’ and she does it
so quickly…Oh, I can’t cut the vegetables, she made me a
big pot of soup and put it in five different containers and
put them in the freezer. (P40, in-depth interview)
Another participant had experienced significant
weight loss during her illness. She explained that having
someone else preparing a meal encouraged her to eat.
This combination of help and company encouraged participants to eat more:
[Care aide] always does the dishes and makes me
lunch…if someone cooks for you, you always eat more you
know. (P51, in-depth interview)
Importantly, in terms of enabling patients to die in
the place of choice, some participants reported how they
considered the care-aide support would assist them to
remain longer at home. A comment that she had ‘‘Hit the
jackpot’’ was made by a participant who had recently
developed severe sciatica when she was randomised to
the care-aide intervention. She later stated in a follow-up
brief interview:
It made it easier at home with the care aides, they were
terrific. (P44, brief interview)
Supporting well-being
The care aides provided attention and care, which
increased feelings of well-being:
… [Foot massage by care aide] it’s nice when you get pampered.
Oh it’s brilliant, that’s the best thing that’s happened
to me you know, you feel like a normal person
again…almost you forget that you’ve got cancer. (P51,
in-depth interview)
Companionship and help from care aides provided a
boost and a range of benefits including enhancing selfworth
and confidence. One participant commented:
The care aide really boosts me up – she’s brilliant! She
makes me feel better…Ooh, a lot of benefits [care aides].
My whole esteem is gone up and I feel like the needs, that
someone cares, you know, not just your family – they care
but they haven’t got the time. And having the carers is
brilliant, you get a bit pampered. (P51, in-depth interview)
Another participant also talked about an increase in
her confidence:
No you wouldn’t believe how much that girl [care aide]
gives me confidence ….nothing is too much trouble… (P40,
in-depth interview)
Enhancing quality of life and preserving a sense of
dignity
The care aides supported the participants in having better
quality of life and a sense of dignity:
The best thing happened is you feel more value of life,
more quality of life…It makes you feel more valued. …and
I’m now in the position where I get the help and it feels
great. (P51, in-depth interview)
Privacy is an important aspect of dignity preservation:
I don’t want to be a burden on anyone, I don’t want to get to the
stagewhere I can’t do anything formyself…I’m a very, very private
person…I don’t like anybody touchingme, you know, like,
showering me. But you never know… [care aide] said if ever
you need showering, I’ll do it in such a way that you will not be
embarrassed. (P40, in-depth interview)
Participants liked not having to ask for help and the
fact that the care aides anticipated their needs was appreciated.
This was an important aspect of care tenor, a key
component of dignity preservation:
…So she says, ‘‘Don’t make the bed, I will make it -,’’ and
she makes the bed for me, you know… You won’t believe
what she does, she thinks about it before you do. She is,
she’s there before you, before I am, yes, you know? She’s a
wonderful lady. (P40, in-depth interview)
Reducing loneliness and isolation
Participants reported feeling less isolated, especially
when dealing with difficult feelings.
I feel everybody’s got my bat, you know? I’m not on my
own. That’s what was worrying me to death before, you
know in case I was on my own. (P40, in-depth interview)
The care aide also helped participants to stay in touch
with friends, thereby enhancing social networks and
feelings of belonging and reducing feelings of isolation.
‘‘She ismy contact with the outside world’’ was stated by P24
in the brief interview. One participant, who was losing
strength and sensation in her hand, was grateful to the
care aide for helping with writing postcards and cards:
She’s [care aide] took a lot of the burdens off me. She’ll
say: Now if you’ve got any cards or postcards you have to
send, get them ready and we’ll do them on the Monday.
She gets it all planned and says ‘don’t worry with your
bad hand (I’m not writing very well), call out the names’…
and she writes them… (P40, in-depth interview)
Some of the participants related how they and the
care aide had enjoyed each other’s company and built a
good relationship. This relationship enhanced wellbeing,
created a sense of someone being there for them
and also provided much needed, ongoing social contact
and friendship. It was also important to the patients that
the care aide did not feel burdened by this relationship:
But she, she just…well we’re good pals, pals together you
know? Good company. It’s not like it’s as it’s, it’s a burden
to her you know? She’s…we enjoy each other’s company.
(P40, in-depth interview)
Oh definitely, definitely…it’s just such a great support. It’s
not physical, it’s mental as well. You know, emotional. It’s,
it’s such a support, especially you get nice people like that.
We’ve got a, a good relationship sort of, you know? (P51,
in-depth interview)
Participants also reported a feeling of security and
peace of mind when they were at home alone.
[Care aide] given me a sort of security that I’ve never had
lately, you know what I mean? Because I was up in the air
for a while, you know, not knowing what was happening
yes… And, now I’m, I’m feeling good. (P40, in-depth
interview)
One participant considered that the care-aide intervention
would have been better at a later time when his
physical capacity decreased; it was perceived as being
provided too early for his physical needs. Another
participant also reflected that it may have been more
successful if there had been a ‘better match’ between
him and his care aide:
Yes, I was kind of dubious about whether I needed it [care
aide] because, I’m fairly independent and I’ve sort of tried
since I got the illness, I’ve tried to keep things as normal as I
could…because I’ve been living on my own for a long
time…I proceeded with it [care aide] …we both decided it
was really only a social visit…maybe, if there had been a better
match with the person, and we’d hit it off, and had more
in common, that may have been an outcome…I may have
wanted to continue with it…(P53, in-depth interview)
Impact of the personal alarm intervention
The personal alarm model of care resulted in benefits
that can be grouped under two themes: Imparting a
sense of security and providing peace of mind; and dealing
with feelings of isolation.
Imparting a sense of security and providing peace of mind
The use of the personal alarm provided participants with
a feeling of security and confidence in performing their
day to day activities. All participants described being
relieved that if they had a fall or something happened,
they could contact the service provider at any time of
day or night for help. It also reduced anxiety about
venturing outside:
Oh its [personal alarm] made a big difference to me. Like,
I’m not so worried about going out with her [the dog].
(P49, in-depth interview)
One man was feeling more reassured since having
the personal alarm to wear:
Yes, no it [personal alarm] feels there’s something there if
you do go down like. Because I mean if you fell down out
there somewhere and you couldn’t get up, what do you
do? (P49, in-depth interview)
The feelings of safety and security enabled participants
to retain their enjoyment in going out and also to
continue with pleasurable activities. The feeling of safety
was more than physical safety; it was supporting people
in maintaining normality. One participant, who had a
strong connection to nature, felt secure in the knowledge
hat
and most have been 3 months or less with the palliativecare service.Impact of the care-aide interventionThe care-aide model of care resulted in benefits that canbe grouped under four themes: Easing the burden ofeveryday living; supporting well-being; enhancing qualityof life and preserving a sense of dignity; and reducingloneliness and isolation.Easing the burden of everyday livingThe provision of care-aide support was a significant helpto participants trying to manage their daily householdtasks while living on their own. This practical supportenabled participants to retain some degree of control oftheir lives and remain in their familiar surroundings.This support was described by an independent 80-yearoldparticipant as reducing the burden of daily living:She’s [care aide] changed my life quite a lot. She’s takenaway a lot of the burdens you know. There’s certain thingsyou just can’t do. (P40, in-depth interview)Care aides provided help with transport enablingparticipants to get on with life without having to rely onneighbours or friends for lifts:It was good; it gave me an opportunity to get out of thehouse. She [care aide] was flexible and sensitive to myneeds. If I am not so well, she gave me empathy. (P35 briefinterview)…and yes, she’s [care aide] taken me there [Dermatologist],and it doesn’t take long and on the way back we call inand do a bit of shopping. So really and truly she’s been agodsend. (P40, in-depth interview)Care-aide support also had a positive influence onparticipants’ routines, in particular at mealtimes. Participantsfelt encouraged to eat because someone had takenthe time to prepare a meal for them and the care aidesprovided company during the meal. One female participantwho was unable to chop vegetables herself said:[Care aide] is marvellous. I would say sixty percent, she’shelped. She made me a big pot of soup one day. Webought these vegetables, I asked if she could help chop upthe vegetables, and she said: ‘Sit down and make a cup oftea for yourself. I’ll make you the soup…’ and she does itso quickly…Oh, I can’t cut the vegetables, she made me abig pot of soup and put it in five different containers andput them in the freezer. (P40, in-depth interview)Another participant had experienced significantweight loss during her illness. She explained that havingsomeone else preparing a meal encouraged her to eat.This combination of help and company encouraged participants to eat more:[Care aide] always does the dishes and makes melunch…if someone cooks for you, you always eat more youknow. (P51, in-depth interview)Importantly, in terms of enabling patients to die inthe place of choice, some participants reported how theyconsidered the care-aide support would assist them toremain longer at home. A comment that she had ‘‘Hit thejackpot’’ was made by a participant who had recentlydeveloped severe sciatica when she was randomised tothe care-aide intervention. She later stated in a follow-upbrief interview:It made it easier at home with the care aides, they wereterrific. (P44, brief interview)Supporting well-beingThe care aides provided attention and care, whichincreased feelings of well-being:… [Foot massage by care aide] it’s nice when you get pampered.Oh it’s brilliant, that’s the best thing that’s happenedto me you know, you feel like a normal personagain…almost you forget that you’ve got cancer. (P51,in-depth interview)Companionship and help from care aides provided aboost and a range of benefits including enhancing selfworthand confidence. One participant commented:The care aide really boosts me up – she’s brilliant! Shemakes me feel better…Ooh, a lot of benefits [care aides].My whole esteem is gone up and I feel like the needs, thatsomeone cares, you know, not just your family – they carebut they haven’t got the time. And having the carers isbrilliant, you get a bit pampered. (P51, in-depth interview)Another participant also talked about an increase inher confidence:No you wouldn’t believe how much that girl [care aide]gives me confidence ….nothing is too much trouble… (P40,in-depth interview)Enhancing quality of life and preserving a sense ofdignityThe care aides supported the participants in having betterquality of life and a sense of dignity:The best thing happened is you feel more value of life,more quality of life…It makes you feel more valued. …andI’m now in the position where I get the help and it feelsgreat. (P51, in-depth interview)Privacy is an important aspect of dignity preservation:I don’t want to be a burden on anyone, I don’t want to get to thestagewhere I can’t do anything formyself…I’m a very, very privateperson…I don’t like anybody touchingme, you know, like,showering me. But you never know… [care aide] said if everyou need showering, I’ll do it in such a way that you will not beembarrassed. (P40, in-depth interview)Participants liked not having to ask for help and thefact that the care aides anticipated their needs was appreciated.This was an important aspect of care tenor, a keycomponent of dignity preservation:…So she says, ‘‘Don’t make the bed, I will make it -,’’ andshe makes the bed for me, you know… You won’t believewhat she does, she thinks about it before you do. She is,she’s there before you, before I am, yes, you know? She’s awonderful lady. (P40, in-depth interview)Reducing loneliness and isolationParticipants reported feeling less isolated, especiallywhen dealing with difficult feelings.I feel everybody’s got my bat, you know? I’m not on myown. That’s what was worrying me to death before, youknow in case I was on my own. (P40, in-depth interview)The care aide also helped participants to stay in touchwith friends, thereby enhancing social networks andfeelings of belonging and reducing feelings of isolation.‘‘She ismy contact with the outside world’’ was stated by P24in the brief interview. One participant, who was losingstrength and sensation in her hand, was grateful to thecare aide for helping with writing postcards and cards:She’s [care aide] took a lot of the burdens off me. She’llsay: Now if you’ve got any cards or postcards you have tosend, get them ready and we’ll do them on the Monday.She gets it all planned and says ‘don’t worry with yourbad hand (I’m not writing very well), call out the names’…and she writes them… (P40, in-depth interview)Some of the participants related how they and thecare aide had enjoyed each other’s company and built agood relationship. This relationship enhanced wellbeing,created a sense of someone being there for themand also provided much needed, ongoing social contactand friendship. It was also important to the patients thatthe care aide did not feel burdened by this relationship:But she, she just…well we’re good pals, pals together youknow? Good company. It’s not like it’s as it’s, it’s a burdento her you know? She’s…we enjoy each other’s company.(P40, in-depth interview)Oh definitely, definitely…it’s just such a great support. It’snot physical, it’s mental as well. You know, emotional. It’s,
it’s such a support, especially you get nice people like that.
We’ve got a, a good relationship sort of, you know? (P51,
in-depth interview)
Participants also reported a feeling of security and
peace of mind when they were at home alone.
[Care aide] given me a sort of security that I’ve never had
lately, you know what I mean? Because I was up in the air
for a while, you know, not knowing what was happening
yes… And, now I’m, I’m feeling good. (P40, in-depth
interview)
One participant considered that the care-aide intervention
would have been better at a later time when his
physical capacity decreased; it was perceived as being
provided too early for his physical needs. Another
participant also reflected that it may have been more
successful if there had been a ‘better match’ between
him and his care aide:
Yes, I was kind of dubious about whether I needed it [care
aide] because, I’m fairly independent and I’ve sort of tried
since I got the illness, I’ve tried to keep things as normal as I
could…because I’ve been living on my own for a long
time…I proceeded with it [care aide] …we both decided it
was really only a social visit…maybe, if there had been a better
match with the person, and we’d hit it off, and had more
in common, that may have been an outcome…I may have
wanted to continue with it…(P53, in-depth interview)
Impact of the personal alarm intervention
The personal alarm model of care resulted in benefits
that can be grouped under two themes: Imparting a
sense of security and providing peace of mind; and dealing
with feelings of isolation.
Imparting a sense of security and providing peace of mind
The use of the personal alarm provided participants with
a feeling of security and confidence in performing their
day to day activities. All participants described being
relieved that if they had a fall or something happened,
they could contact the service provider at any time of
day or night for help. It also reduced anxiety about
venturing outside:
Oh its [personal alarm] made a big difference to me. Like,
I’m not so worried about going out with her [the dog].
(P49, in-depth interview)
One man was feeling more reassured since having
the personal alarm to wear:
Yes, no it [personal alarm] feels there’s something there if
you do go down like. Because I mean if you fell down out
there somewhere and you couldn’t get up, what do you
do? (P49, in-depth interview)
The feelings of safety and security enabled participants
to retain their enjoyment in going out and also to
continue with pleasurable activities. The feeling of safety
was more than physical safety; it was supporting people
in maintaining normality. One participant, who had a
strong connection to nature, felt secure in the knowledge
hat
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