The research suggests that there are some common “storylines” that might help to understand engagement difficulties.
(i) Protecting social status
We heard that some older people appeared to have more difficulty accepting care due to an assumed loss of status or social standing. This was most apparent when receiving care from younger staff. A little exploration into someone’s history can help to understand this.
One older person, in her working life, worked in a high status occupation, and she would normally have younger staff working in more junior positions. It seems that this person was perceiving the tables to have turned: young staff now telling her what to do. This was challenging to her, and seemed to clash with her status as a senior executive.
Some culturally-specific factors were also identified. The choice of words conveyed a sense of respect and seniority in some languages and cultures, and where care workers would use over-familiar titles and terms, this may easily cause offence and make assumptions about status.
They were happy with [a care service] but then when the person turned up, he didn’t want to go out with them ‘cause they were too young. He felt like that he was just taking a kid out, sort of thing. He didn’t see how they could help him, sort of thing. He felt that he was going to be helping them. So that did break down a little…well, it did break down. It ended up that he didn’t have any care at all. (Specialist support worker)
Others considered that younger care workers would not have shared life experience in order for them to relate to each other, or that the older person would see them as of an age more akin to grandchildren, so may be reluctant to allow them to help.
Other stated that service users were often quite private people, combined with always having being independent;
In terms of the care the situation was my parents were both in their mid-90s, and both of them had health conditions. My mum was in a situation where her mental health was deteriorating, and that was over a period of months, but they were both very independently minded. And so they were quite resistant to help, so that was an issue throughout really that sometimes we managed to get help for them and they managed to reject it all and go back to how they were before. Because for a long time they attempted to cope on their own. (Carer)
(iii) Duty to care
For carers, having a feeling of ‘duty’ towards the service user was also evident. However, this was often driven by the care on offer not being acceptable for various reasons, such as: a lack of flexibility in provision (e.g. in terms of not fitting into the service users routine), or poor engagement of the service user in meaningful activities. Such as the example below:
One of the carers that came in, they would write down what they’d done, they would…it was made very clear that if you asked dad what would you like to eat, he would say I’m alright, I’ve just had something, and he hadn’t had something. So then they would just walk away, and he wouldn’t have anything to eat. (Carer)
Other factors that contributed to a sense of duty, and dissatisfaction with service delivery such as the lack of culturally appropriate care available. Examples included care workers discussing topics that were not culturally appropriate with the service user, such as: eating beef, methods of contraception, and not addressing the older person in a way that is culturally appropriate:
So cultural awareness, and how you address someone, she’s never asked in six years, how would you like to be addressed. Now, strictly speaking, my sister’s first Gujarati name is [female name] ben, B-E-N means sister, B-H-A-I, bhai means brother, so somebody younger than me would say [male name] bhai means brother [male name], whereas [female name] is her first Gujarati name, [inaudible 08:35] means sister so it means sister [female name] ben. So she should really say [female name] ben, but in six and a half, six years, she’s always said, Mrs [initial], Mrs [initial]. Now, somebody else could object to that, find that quite offensive, why is she calling me Mrs [initial], sister’s surname is Mrs [surname], but she doesn’t even make an attempt to say, Mrs [surname], she says, Mrs [initial]. (Carer)
There was also often an expectation that care would be delivered through family members:
she [service users sister] did do her shopping for her because she knew she wouldn’t go out and get anything herself. She did go and get her pension, she did make sure that her bills were paid and all those sort of things that she couldn’t do herself without…but she never…the lady in question never ever thought that that was…she never considered that or didn’t appear to me to consider that as help, it was almost like it was expected because she’s my sister so she will do it. It’s not like somebody coming in and doing it for you, it’s just a case well, you know, if I can’t do it, then she has to do it sort of thing. (Support worker)
(iv) Anxieties about repercussions
A state of tension was felt by informal carers, linked to a fear of feeding back to care services about bad experiences in case of repercussions. There were others who were fearful of repercussions where feedback was not actively encouraged and where carers were inexperienced in feeding back in a constructive way.
The regular lady who comes who we are fond of, we do like her coming in preference to others – there is that dilemma. On the one hand, she’s punctual, she’s reliable, there’s the issue of familiarity, she knows sister, she knows what needs to be…she knows the house, she knows our preferences and the way we want things doing. If we make a complaint about her, the fact that she cuts corners, she’s always in a rush and she leaves way beyond the time we pay for, we get somebody else, we get another care worker (Carer)
(v) Fearful of the future
Both carers and service users were often found to be fearful of the future and therefore did not plan well for it. Research by Durand et al (2009) found being fearful of the future to be one of the main reasons for resisting care along with older adults being fearful of allowing new people into their home, and being fearful of being put into a home or of losing their independence. Additionally, a lack of willingness to use respite services was found to be associated with the ability of the service to personalise care as well as the quality of care. If carers felt their family member / friend was not able to engage in meaningful activity (allowing them to maintain their interests and / or hobbies) during their stay they were reluctant to relinquish control over their loved ones’ care (Gilmore, 2019).
This is demonstrated in below, with the need to take a tailored and sensitive approach being emphasised:
Yes. It’s been very much where we’ve had to say you know dad, to start off with, it’s just until you can get independent again. We knew that it wouldn’t… If anything, his care needs are going to go up, but we’ve got him to a point now where he accepts his carer going in, and quite looks forward to seeing her. So it’s been…I think that that acceptance…people think that, you know, because they turn away services, they think oh well they don’t need it. It’s not that they don’t need it, it’s just that they need that preparation to accept services. And it’s just got to be done in a very sensitive way. And now, you know, dad’s very grateful for the support, you know, when [female name], his carer, goes in, he says ee I love you, thank you ever so much, and, you know. And she says he’s an absolute pleasure to look after. Whereas before he would get sort of angry and not like physically aggressive, but would be a bit rude to the carers, which isn’t dad, but I think it was just the way that he was approached. (Carer)
(vi) Poor continuity of care
A lack of continuity of care affected also both informal carers and service users, as did support workers not staying for the designated amount of time when visiting. This primarily appeared to be due to the difficulties it creates when trying to build a trusting relationship
I have a lady who I worked for for round about three years and initially when I went in she did have a care package and she did used to let one certain carer give her a shower, but as I got involved the care package broke down due to lots of reasons, one being inconsistent with the carers. She would say, well, it’s a different face every time someone comes in. How can I build relationships with people if I don’t know who they are, she would say? She used to be really on the ball and understandable, she’s letting these strangers into her house (Support worker)