Three factors emerged as barriers to carer identification:
The gradual process into caring, and the transition to, and identification with, the term ‘carer’.
The all-encompassing nature of caring for someone with advanced illness often resulted in carers prioritising the needs of the ill person at the expense of their own.
The legitimacy of carer needs and ambiguity of the role of primary care teams in meeting them.
Caring as a gradual process
Identifying with the term ‘carer’?
The 3 sources of data highlighted that those with a caring role did not necessarily identify with the term ‘carer’, preferring to think of themselves as relatives or friends who were sharing the journey with the ill person. Researchers at the workshop reported that they sometimes avoided using the term ‘carer’ when recruiting carers to research studies.
The literature revealed that the transition into caring was often a gradual one and was associated with a wide range of responsibilities [24, 25]. Small duties accumulated until carers recognised that they were undertaking a significant supportive role – particularly if they had to give up work at that point . Many carers saw the caring role as intrinsic to their relationship as wife, husband, son, daughter, sibling etc. [26–32]. Over time, some carers did identify with the term carer, yet others rejected it completely . Some caregivers preferred to be self-sufficient, feeling that they did not yet need help , or that support from external paid carers was a potential intrusion [27, 33]. Furthermore, acknowledging the caregiving role meant recognising that the ill person needed to be cared for . In some circumstances neither the carer, nor the cared-for person may be ready to face this reality.
The focus group participants discussed when they felt they became carers. Faye felt she became her mother’s carer when her mother lost confidence in her activities of daily living, and subsequently her independence. Faye described the reversal of roles that took place as the caring role evolved.
“Where I feel the carer became what was the daughter, the carer part became more relevant, was when she lost that confidence.” (Faye, caring for her mother).
For some, it was only when the caring role was acknowledged by others that they realised they were ‘carers’ . For example, Alison’s GP told her that she was a carer and therefore could be on the carer register.
“Alison: it was the GP, my GP, who said “you are a carer and I need to put you on the register” and this…
Researcher: Ah, interesting, OK.
Alison: And I was going “oh!” And so it was news to me, you know, I just assumed I was the daughter” (Alison, cared for her father).
The focus group participants highlighted that acknowledgement and recognition of their caring role often occurred when there was a crisis, e.g. if the illness of the cared-for person deteriorated markedly, and the extent of their caregiving role came to light. However, recognition could be positive. For example, being identified as a carer meant Alison was entitled to particular benefits through her employer. Workshop researchers reflected that following a crisis, it was sometimes a relief for carers to be offered a package of paid care e.g. when the cared-for person returned home from hospital.
However, for others, being termed a carer could be seen as detrimental or offensive.
“She [carer] loved him [patient] dearly, they loved each other dearly, and she’d been providing such an amount of care. She was getting him up, helping him with the shower, you know, he couldn’t go to the toilet without her, she was there all the time, she was in a carer role. And when I met them and I was asking about benefits and I said something and remarked that she was a carer. And she sat up really straight and she said, and she got really flustered and said “oh, am I a carer now?” Because he’d been living with these strokes and she’d been doing this, you know, the disability from the strokes for so long, suddenly he’s got lung cancer and he gets referred to us [specialist palliative care]. And I said “carer” and she was really shocked by that! And that made me think “oh, crumbs!” you know, the word ‘carer’ has such a big weight” (Health professional, community specialist palliative care nurse).
The caring situation is complicated and what is right for one family may not be right for another. Some carers may welcome paid care and others may find it an intrusion, making a private place, public. If carers do not recognise themselves as such, they are less likely to seek out support which suits their needs.
Changing relationships in the context of caring
How existing relationships could be challenged by the caring situation was highlighted in all 3 data sources – particularly by focus group participants who were caring for a parent. For example, Pamela was the main carer for her mother who suffered from dementia. Pamela’s mother did not accept her need for care and still wanted to be independent, so it was difficult for Pamela to ask for help and explore the services available to her and her mother. This increased Pamela’s feelings of isolation and concern. Pamela also highlighted the challenge of managing existing relationships with family and friends. Pamela’s feelings were echoed by other dementia carers in the study.
“But I do feel that relationships slide, both with your children, with your husband or your partner, I just think it all just… And I think that, you know, your children and your partner or your husband maybe understand initially but when it’s for some years, you know, it begins to bite.” (Pamela, caring for her mother).
Relationships were further compromised if carers were experiencing stress, anxiety and tiredness. Researchers at the workshop highlighted that the relationship between the patient and the carer may be challenged if the carer thinks they are caring, but the patient does not think they are being cared for. This could be another reason why carers remain unidentified and potentially unsupported. Joan described her frustration as her husband was a perfectionist by nature, but she saw that compromises had to be made in light of his deteriorating condition.
“Like yesterday morning, I sort of had like been sort of, getting annoyed about things because he’s a perfectionist and I said things just can’t be perfect now” (Joan, caring for her husband).
The relationship between the carer and the cared-for person could affect the carer’s willingness to present themselves as someone in need of support – particularly if the cared-for person is resistant to, or does not think that help is needed .
Engulfed by the caring role
Findings of the literature review and focus groups suggest that caring, particularly towards the end of life, can be all encompassing [24, 27, 35, 36]. Carers may be engulfed by the process and unable to access support because they do not have sufficient time, or are fearful of leaving the cared-for person [33, 37]. Carers may also be concerned about diverting resources to themselves at the expense of the cared-for person . As the patient’s illness progresses the carer may struggle to find the time to access support for themselves or visit the GP with their own medical concerns.
Carers in the focus groups discussed how their social world often contracted, particularly as they became fearful of leaving the cared-for person,
“My husband would say to me “oh yes, you must go into town and meet [friend]” – my friend who… I was just a bundle of nerves, if the bus was held up coming back” (Joyce, cared for her husband).
Many carers in the focus groups commented on how isolating the caring role was,
“I feel very isolated, there is only me. She [mother] won’t have any kind of help of any description and my siblings don’t really want to know. So very much on my own” (Pamela, caring for her mother).
This feeling of isolation compromised the carers’ own identity and sense of self.
“I’d always had fairly wide interests, I found that I was losing interest in anything in sport or politics or whatever.” (Michael, caring for his wife).
“You do have to really work at maintaining your own sense of self, you know, and that you have a value outside of your role towards this other person” (Jane, cared for her husband).
Managing competing demands
The focus group participants highlighted that the all-encompassing nature of caregiving at the end of life also complicates the delicate balance of competing demands that the carers experience in all four domains; physical, psychological, social and spiritual. They highlighted the challenges of managing their caring role and friends, family and work. Researchers described how it became more of an issue as the cared-for person’s condition deteriorated.
Alison struggled with the demands of work, family and the caring role for her father, yet at the same time she wanted to spend more time with him before his death.
“And so it made me… you know, when you were thinking, maybe I shouldn’t be at work, maybe I should leave, and the GP – his GP – you know, was saying “oh, you must keep your work, you can’t…” you know, and so they were stressing it and I’d think well, that’s fair enough but how do I do this as well?” (Alison, cared for her father).
Joan described how she gave up her demanding job as the caring role gradually increased. As a result, she had no time to herself and decided to do voluntary work to create distance between herself and the caring situation.
“I’d gave my work up to look after my husband and I felt I wasn’t doing anything for myself” (Joan, caring for her husband).
Researchers at the workshop commented that offspring who were caring for a parent found managing demands on them more challenging. However, a spouse in the focus group described how she did not want to burden her children, who themselves had young families with her concerns about the caring role.
The all-encompassing nature of caregiving is a potential barrier to identification. There is evidence in this section to suggest that as carers struggle with demands on their time, they may be unable to recognise their own needs as legitimate and seek support.
The role of primary care in legitimising need
All 3 data sources suggested that primary care professionals’ lack of knowledge about existing services for carers was a barrier to providing support. Also, in the literature review and in the focus groups, GPs were thought to be reactive, rather than proactive in their approach to supporting carers [39, 40]. Moreover carers did not know what, if anything, to look for and were dependant on a thoughtful and knowledgeable response from professionals . Professionals were not seen to legitimise carer needs. One carer described how she thought there was nothing for her, and another, that not knowing where to go for help was the problem,
“I just don’t feel there’s… for me, I don’t feel there’s anything” (Pamela, caring for her mother).
“And it’s not knowing where to look for help that is the problem” (Jane, cared for her husband).
The availability and provision of services was complicated by ambiguity about the role of primary care professionals in identifying and supporting carers, both from the point of view of the GP and the carer [39, 42]. The GPs and district nurses in the focus groups thought that identifying and supporting carers was their role, however the carer themselves may not.
“Well, certainly as a GP, I would certainly see it as a very important part of my role to help someone who is a carer with that issue, but I think they would struggle to see it as the GP’s role” (Health professional, GP).
Researchers described the mixed views that carers had about support from external care. For example, some of those caring for someone with COPD found that external carers could be intrusive and impersonal. If patients or carers are reluctant to have external care provision in the home they may not identify, preferring instead to be self-sufficient. Although, health professionals in the focus groups acknowledged a responsibility to identify and support carers, the literature suggests that the challenges of doing so include issues of confidentiality, differing information needs between patients and carers and when the carer is registered with a different general practice . It was also noted that health professionals tend to see the carer in relation to the patient [31, 39], meaning the individual needs of the carer may be overlooked. One GP in the focus group thought that as caring was not, in itself a medical problem, the carer may not see their needs as legitimate for the GP and therefore not self-identify.
“But I’m aware that, the same with people when they come to the GP, they think they have to do it with some kind of medical problem, or they at least have to be officially depressed or something” (Health professional, GP).
Limited resources were cited as a common barrier to identifying and supporting carers in the literature, where practitioners were concerned about opening ‘Pandora’s box’ and being overwhelmed by demand for services that may not be available , or that they lacked time . This was echoed by professionals in the focus groups. In contrast, carers’ perceived needs are often relatively modest ; rather carers often want acknowledgement of their role, to be listened to and to gain access to other sources of support [35, 44], as opposed to major service provision.
Workshop discussions highlighted how researchers were often confronted with a complex network of people involved in a caring situation, making it difficult to establish whom, if anyone had the main caring role. This may also apply in the general practice context, although such a network of carers might support each other and therefore have less need for formal support.
Most professionals acknowledged that finding time to speak with the carer was difficult, and those who worked in the community highlighted the importance of the door-step conversation.
“You kind of can put paranoia to the patient then because they feel ‘what are they talking about?’ and…And I’ve had that with patients before is, you know “what were you talking about? You know how long I’ve got left” and “you know more than you’re letting on” and stuff.” (Health professional, community specialist palliative care nurse).
Ambiguity about whose role it is to identify carers in the community, from the perspective of carers themselves and professionals is a barrier to identification. This is complicated by lack of time, resources and knowledge of available services.