Understanding what affects psychological morbidity in informal carers when providing care at home for patients at the end of life: a systematic qualitative evidence synthesis

1.1.1 Patient physical decline

Witnessing a decline in the patient’s condition appeared to contribute to poor mental health in carers. Carers reported that seeing the patient suffer was distressing and caused a feeling of powerlessness and ‘a level of anxiety that never really goes away’ (McDonald et al., 2018,45 p. 73):

It’s exhausting ….. It’s heartbreaking to know, you’re, like sitting on your hands. There’s nothing I can do for my mom … . Watching her suffer I suppose is the hardest part … .

(Ferrell et al., 2018,37 p. 289)

And it was very hard on her but also hard to watch. Well, you couldn’t do anything to, so to speak, take away what is hurting, you stand totally helpless and alone.

(Pusa et al., 2012,54 p. 36)

The decline that the patient experienced when they had an infection was cited as one of the most anxiety-provoking events for the carers:

My wife had it twice, the infection, and it’s a lot of pain. When you see them going through it, it bothers you extremely bad.

(Williams et al., 2017,63 p. 240)

1.1.2 Patient cognitive decline

In addition to the physical decline, carers reported the impact of the patients’ cognitive decline on their own mental health. This included the patient’s mood swings, fear about death and depression. For example:

As soon as I see him struggling or … being depressed, everything in my world, my own quality of life, comes to a screeching halt.

(McDonald et al., 2018,45 p. 72)

Other carers described how the patient’s disorientation and the loss of control was distressing. They grieved the loss of how the patient used to be:

So, and what is naturally the worst (…) there was a disorientation and absent-mindedness which now has become extremely bad. So, and now I have someone in front of me, who’s got nothing to do with the person I was with 2 months ago [crying].

(Wasner et al., 2013,61 p. 84)

Some patients also experienced personality changes as their condition progressed. Carers reported the change in a family member’s behaviour as overwhelming. They experienced a sense of loss that negatively affected their quality of life:

The worst is, that sometimes he’s so aggressive, so much changed from the feeling and sensitive person he used to be. Sometimes I think I don’t matter to him any more (…) he’s just so totally changed. Actually, I’m afraid [that] I’m going to collapse and have a breakdown.

(Wasner et al., 2013,61 pp. 81–82)

1.1.3 Fear of future decline

Carers experienced fear and anxiety around patients’ future decline. They worried about the effects on their own health and how they would cope if the patient’s condition deteriorated, especially when the carer was older. 48 The uncertainty around how much time they had left and the variability of the prognosis was anxiety-provoking, with some describing it as ‘terrifying’:45,62

I still feel a little bit like my fate is cast to the wind a bit, because we don’t know what happens next. I’m very afraid of, very afraid of the time, which will come, when [patient] is increasingly incapacitated. I’m very frightened about that.

(McDonald et al., 2018,45 p. 74)

The fact that the patient was never going to get better and that they faced a decline left some carers feeling depressed and helpless:

But the reality that this isn’t going to get better, there’s no light at the end of the tunnel on this one and those things all weigh heavy on a caregiver.

(Parker Oliver et al., 2017,50 p. 652)

1.2.1 Exhaustion

The amount of time dedicated to caring responsibilities and the nature of these tasks had a physical and mental toll on carers. This, in addition to the daily routine and unexpected stress, threatened their ability to cope:

You’re tired all the time … exhausted.

(Parker Oliver et al., 2017,51 p. 651).

Carers also described how caring is a 24/7 role where their sleep can be frequently disrupted or they are constantly watching the patient, waiting for something to happen. 47 Carers frequently reported being present to offer support when they lacked the energy to do so. 37,38 This inability to gain adequate rest could have a negative impact on the carers’ mental health:

I don’t think I slept through the night for the last year and I don’t think one realizes that you’re at a point of total exhaustion (…) you can’t even really take in what’s happening.

(Kutner et al., 2009,43 p. 1102)

Some carers reported that the stress of their situation had led to insomnia. However, they were unable to take medication to promote sleep as they needed to be available for the patient at night:

I don’t sleep a lot. And I think about going to the doctor and getting sleeping pills and then I think, no, that would not work because if I go into too deep of a sleep and he got into distress, I wouldn’t be able to hear him so it is important that I am aware …

(Ward-Griffin et al., 2012,60 p. 499)

Carers also described the impact of exhaustion on their health, with depression, hopelessness, anxiety and panic attacks being widely reported:

Tired of it! Yes, you get fed up … it’s going on a long time and … yes. I think we do feel that the pressure is getting to us really. It has been hard …

Yeah … I’d say now, a wee bit depressed, eh, wearing you down, kind of thing, you know? Oooh!

(Murray et al., 2010,50 both p. 3)

Every night I woke at 1 am or 2 am and cried and cried and can’t stop … I scared all the time and my neck’s swollen … and I couldn’t breathe (rapid huh huh huh-anxiety attacks)…. The doctor gave me Sinequan to make me slow down, make [me] not stressed too much …

(Heidenreich et al., 2014,40 p. 281)

1.2.2 No time for respite or self-care

Carers reported the relentlessness of caregiving, with restricted freedom and constraints associated with patient dependency. 39 Carers often felt unable to leave the patient alone, prioritising their caring responsibilities and restricting their normal activities. 39,41,50 Unexpected complications and the unpredictability of symptoms also meant that carers’ plans sometimes had to be cancelled:45

If you wanted to go out somewhere and she doesn’t feel well that day, then that’s it. It impacts on your life. […] It affects, the illness affects everybody.

(McDonald et al., 2018,45 p. 73)

This lack of control and respite was overwhelming and had an impact on carers’ mental health and quality of life as they suppressed their own needs and felt they were neglecting themselves:37,45,54,63

[caring is] playing a toll on me because it was to the point where I felt like I didn’t have a life.

(Participant 05)

Sometimes you get to that point of that you just want to scream.

(Participant 03) (Williams et al., 2017,63 p. 239)

Even though they felt exhausted and overwhelmed, some carers did not allow family or friends to care for the patient as they considered that only they had the experience and knowledge needed for the role. 40,41 If they did leave the patient, they felt anxious, guilty and pressured to return:38,54

You can’t give that job [caregiving] to somebody else (…) you can’t give it to a hospice nurse … You can’t give it to one of your kids … that’s a big load to carry and it’s exhausting. It wears you out because you can’t give it away … you don’t want to give it away.

(Kutner et al., 2009,43 p. 1102)

1.2.3 Loneliness and isolation

Carers described the loneliness and isolation that can occur when they are afraid to leave the patient who is at the end of their life. 41 It was reported that the carers’ social circle often became smaller, with the patient becoming the centre of their world. Without work or a social life, they grieved these previous relationships and social worlds and the variety they brought to their life:

It’s the shrinking of your world that I find the hardest (…) The social aspect of it is the hardest because most people get a lot of their social life at work or from doing other things. And with MS there’s no talking to her over dinner, ‘How did your day go honey?,’ because we both had the same day…. It’s hard, the isolation is hard …

(McCurry, 2013,44 p. 57)

As some patients neared the EOL they withdrew from family and friends. This meant that the carers’ relationships with family and friends also suffered as they became more isolated with the patient:

[H]e just didn’t want … he just kind of walled himself away. His personality really changed. His attitude and … he just wanted to be by himself. I can understand that in many ways, but it’s just difficult for the rest of us around here.

(McDonald et al., 2018,45 p. 74)

The requirements of the caring role also meant that carers may have no energy to socialise or do activities that they enjoyed, and individuals may become withdrawn, isolated and depressed:

I knew I was depressed. I didn’t want anybody around me. I didn’t want to talk to anybody or anything like that because I’m a very social person.

(Williams et al., 2017,63 p. 239)

As the patient neared the EOL, there was also a fear of losing the patient which compounded these feelings of isolation:61

What’s to happen? … Oh, no! I can’t think about being alone. I just pray every day ‘Just God help me’. Sometimes I tell the god ‘God if you like him, and you love me give him a little bit more time’.

(Heidenreich et al., 2014,40 p. 281)

Some carers also lost their faith in God during this time, which made them feel alone:

It kind of makes you a bit angry. You think, ‘is there a God?’ Sometimes you think, ‘how can He do that?’ I don’t know, I’m kind of mixed up about all that.

(Murray et al., 2010,50 p. 4)

1.2.4 Conflicting responsibilities

The caring role can also present conflicting responsibilities when an individual needs to care for multiple people. For example, carers reported the pressures of caring while also looking after young children:

Got a new baby, trying to take care of my child. Then, I’m trying take care of her, and all of this was coming on me and trying to work at the same time. It was a lot. It had me extremely tired.

(Williams et al., 2017,63 p. 239)

When carers could not fulfil other responsibilities, such as seeing their children, this led to stress and resentment towards the patient:

For about a year I felt like I needed to visit my son who is overseas. I was trying to get help from the family to place her somewhere while I was visiting. (…) The tension was increasing to the point that I knew that I was walking a fine line between giving care and also, you know, I didn’t want abuse (…) but I knew I was reaching the edge.

(McCurry, 2013,44 p. 55)

Caring responsibilities could also extend beyond the patient to supporting other family members who may be struggling with the patient’s condition and may even require more support than the patient:

… my mother, she feels the need to still be in control, she has violent outbursts at me … There’s been a shift in the caring role and that’s changed the dynamics of the family, he [patient] is not the problem at all; I’m worried I’m going to have to look after my mother and will have no life.

(Galvin et al., 2016,39 p. 6)

Caring for multiple family members adds to the workload of their caring role and can therefore have a negative impact on levels of anxiety and depression.

1.3.1 Change in roles

The patient’s condition could lead to changes in existing roles such as children assuming the role of carer for their parent,37 or the relationship of husband and wife being replaced with nurse and patient. 33,54 There was a feeling of grief surrounding the loss of the previous relationship which preceded the patient’s illness, resulting in anxiety, distress or uncertainty:33,36,39,61

I believe I also am doing some grieving because we’re not the same couple. He’s not the same person and our life is not the same.

(McDonald et al., 2018,45 p. 73)

Carers may also need to take on additional roles or responsibilities that would have been previously done by the patient. This adds to their workload and can feel overwhelming:

I had to assume his (responsibilities). He used to pay the bills … he used to know when to call the oil man (…) Not only my things, I have his things.

(McCurry, 2013,44 p 56)

1.3.2 Quality of the carer–patient relationship

The quality of the existing relationship between the carer and patient played a significant role in how they perceived their experience and the level of stress they reported. 63 When relationships were not strong, or a carer had taken on the role out of necessity rather than love, the losses associated with having to provide care led to anger and resentment towards the patient and a diminished sense of responsibility:

It was stressful when (…) I was taking care of her at home. We would get into it like you wouldn’t believe. We’d bicker back and forth.

(Waldrop and Meeker, 2011,58 p. 120)

As some patients neared the EOL, the increased workload for the carer meant there was less time to share memories or build new experiences. Changes in the patient’s mood and increased emotional needs also meant that carers could not share their own emotions or experiences from their day within the dyad, which may lead to the carer feeling distant from the patient and experiencing a loss of intimacy. 37

A lack of understanding or gratitude from the patient about the efforts made when caring also impacted on the quality of the relationship, as carers stated this could be frustrating, hurtful and add to the emotional impact of the role:

the pressure that my mam [patient] puts me under, her expectations …

(Galvin et al., 2016,39 p. 5)

1.3.3 Patient ‘non-compliance’

When patients did not go along with their treatment plan, carers reported being upset that their feelings had not been considered and that they were not listened to. This level of discord could be frustrating for the carer, resulting in increased stress, anxiety and distress:42

He just would not listen to me or the doctors, it was very hard on me watching him do what he did, he missed out on so much … the grandkids. I am mad at him for how poorly he cared for himself and the hard time he gave me for trying to do it.

(Kitko et al., 2015,42 p. 393)

If the patient would not take their medication, carers worried that the illness would progress and that they would not be able to cope. Carers could also feel pressure to conceal that the patient was not following their treatment at hospital appointments42 and feel unable to discuss their concerns with the patient as they did not want to cause distress when they were unwell:

I will say to (patient’s name) do you know what the outcome is going to be if you don’t take your insulin … you are going to lose your leg or something else (…) I said I’m not going to be able to care for you (…) He does not want to talk about it and I don’t want him to get upset with his heart being weak.

(Kitko et al., 2015,42 p. 394)

Carers also reported occasionally going against the patient’s wishes regarding their care, which could cause tension. Feelings of loyalty in relation to the patient’s integrity and autonomy resulted in conflicting feelings and distress. There can be a conflict between the patient’s right to decide for themselves versus questions around their capacity to know what was best for them:54

I knew he was getting short of breath and needed to be seen but he refused to let me call the office. It got to the point where I called 911 … I am worried (patient’s name) will be upset with me when he realizes what I did.

(Kitko et al., 2015,42 p. 393)

1.4.1 Current finances

Carers could experience financial challenges that could cause enormous emotional stress. 37,51 Costs of caring for someone at the end of their life can include medical expenses, equipment, home renovations and travel costs. When the patient was the main or only earner in a household, carers struggled to cope with the loss of income when they were no longer able to work:

My husband was the only earning member in the family. Now he is suffering with cancer and admitted to the hospital (…) I stress about finance.

(Shanmugasundaram, 2015,55 p. 540)

Delays in professional care or in receiving equipment also meant that some carers were forced to pay privately for trained or private carers, adding to the financial burden of caring. 47

1.4.2 Work and benefits

Balancing work and caring became increasingly difficult as the patient neared the EOL. Carers reported health-care workers or private carers not showing up, so they were required to provide last-minute care themselves. The unpredictability of the patient’s illness was also a source of distress, especially if the carer’s workplace did not offer flexible arrangements. Many employers were not able to support the carer to take frequent periods of leave:

People want you to work every day. They don’t want you to have to call in sick 2 or 3 days in a row. I was working for a little while when he first took ill but I was in constant worry about whether he had remembered to take his medication, hoping he didn’t go too far …

(Ward-Griffin et al., 2012,60 p. 504)

As a result, some carers had to reduce their hours or stop working all together to provide care. Carers expressed financial concerns due to these changes, which impacted on their mental health:32

Because my husband is sick, I have to give up my job and take care of him … lots of financial problems. Sometimes it gives me so much stress and frustration with the cost … I was very depressed, and I went to a psychiatrist for treatment.

(Shanmugasundaram, 2015,55 p. 540)

Some carers also found it difficult to access information about benefits. Most were not aware what help was available, what they were entitled to, or who to contact and were unsure how to complete the necessary forms, viewing the process as very time-consuming. This resulted in some not claiming for financial support and others only finding out by chance what was available. Some requests were also rejected, which caused further upset and frustration:

Benefits! (we) knew nothing about that at all. We lost 4 years of benefits and I just happened to find out about the way about them.

(McLaughlin et al., 2011,47 p. 180)

1.4.3 Distress over future financial situation

Without a job some carers experienced stress and anxiety around how they would support themselves financially after the patient died:

That was the worst for me, losing my job because of my husband’s illness plus the whole financial situation. When he’s gone, I’ll desperately need a job, otherwise I won’t even be able to pay the rent.

(Wasner et al., 2013,61 p. 87)

I get worried about … how I’m going to live after [patient] dies (…) I do live with some fear of not wanting to be … wanting to have enough money to take care of my needs …

(Parker Oliver et al., 2017,51 p. 651)

Even those who were currently financially stable were anxious about future costs such as nursing homes. This was especially the case in countries that required health-care insurance such as the USA:37

Umm [I am feeling the financial pressure], so then I start to think if he goes into a nursing home and I will not get the carer’s pension and I don’t go to work what are we going to do as income and finance?(…) then surviving is a problem for us.

(Heidenreich et al., 2014,39 p. 281)

1.5.1 Loss of self-determination and autonomy

The loss of self-determination and autonomy had a negative impact on mental health. The feeling of not being in control was a common theme:33

there’s something that has come into your life that is both robbing you and robbing your wife … and it’s not going to get any better.

(McLaughlin et al., 2011,47 p. 180)

Carers’ lives were often determined by the patient’s illness and they described the difficulty of living in the patient’s world rather than their own. 45 Some carers felt so consumed by their role that they struggled to separate their sense of self from the patient.

I as a person do not exist any more.

(Wasner et al., 2013,61 p. 85)

I need to separate myself, but I also need to feel like we’re one. How do I detach, knowing I have a life too? That was hard, working out what to do with myself.

(Ugalde et al., 2012,56 p. 1178)

you become insignificant as a person yourself, you lose your sense of identity, you’re defined as patient’s wife and MND. You nearly don’t know how to behave any more.

(Galvin et al., 2016,39 p. 5)

Others felt angry about their role and there was also a feeling that the suffering that the disease had inflicted on the family was unfair:54

you’re putting your life on hold for someone and its ok to be mad about that … your brain is going through something horrific … the stress of it will do horrible, irrational things to you.

(Parker Oliver et al., 2017,51 p. 652)

1.5.2 Lack of confidence in the caring role

A combination of huge responsibility as a carer and limited experience in their role led to a lack of confidence that was distressing for many. Carers report being uncertain about their own capabilities, with anxiety around whether the care provided is adequate or sufficient:39

It’s actually quite frightening, that you’re in charge of somebody so sick and you don’t know what to do for them and yet you know they need serious medical help.

(Fitzsimons et al., 2019,38 p. 16)

Carers found it difficult to carry out a variety of medical and nursing tasks for patients, especially responding to side effects of medications and changes in symptoms. For example, carers reported how they often made decisions about administering medications alone and felt uncomfortable administering narcotic medication where the patient becomes ‘too incoherent to talk’ (Chi et al., 2018,32 p. 6). The anxiety and uncertainty associated with this increased when the decision was made for the convenience or quality of life of the caregiver. 44 The responsibility of deciding when to start emergency medication could be a major concern for carers:

we never quite know […] … it’s like a balancing act whether to start the steroids or … I know they say leave it 24 hours, but you’re still a bit unsure … you know?

(Farquhar et al., 2017,36 p. 10)

So, I was second-guessing how bad he was. It was a very, very stressful time. It was stressful because I felt completely, completely, alone. I felt completely responsible.

(Fitzsimons et al., 2019,38 p. 15)

1.5.3 Transitions, crisis and pre-loss grief

Transitions often triggered additional stress and anxiety for carers. This included the diagnosis, grieving a previous life, becoming a carer and pre-loss grief. When faced with the diagnosis, carers described how the news was sudden and overwhelming, and it made them feel suffocated, confused and depressed:

You know this suffocating feeling when the air is sucked out of the room, that’s how it felt when the doctor said, ‘We cannot do anything any more’.… We just sank into depression.

(Penman, 2018,52 p. 247)

In the final weeks of life, carers described a pre-loss grief where they feel unprepared for the loss:

… you think right I’m ready, you know, I’m gonna cope and all but then like X does get really, really sick and I think God I’m not ready at all, do you know.

(Hynes et al., 2012,41 p. 1072)

In addition to transitions, carers could also experience a caregiving crisis at any point in their journey. This is when the needs of the dying person and caregiver outweigh available resources. It often combines a rapid decline, more frequent and difficult care, and patient resistance. 58 The crisis period is characterised by heightened anxiety and exhaustion.

1.6.1 Inadequate information

Carers stated that the quality and quantity of information they received were not adequate and failed to facilitate their understanding of the patients’ diagnosis, symptoms, treatment options and support needs. The uncertainty around how the illness will progress was described as ‘exhausting’ and ‘heartbreaking’ (Ferrell et al., 2018,37 p. 289). As a result, carers felt ignored and ill-equipped to deal with the demands of the situation in which they were placed:36

You’re just sent home to deal with it on your own, find your own solutions.

(Farquhar et al., 2017,36 p. 6)

If I’d have had a session with me and someone at the beginning, face to face, to say ‘right your mum has been diagnosed; this is what you need to expect’. But in a very gentle kind of (…) That would’ve been brilliant … being ignorant isn’t going to save you in the long term …

(Moore et al., 2017,49 p. 8)

Parker Oliver et al. 51 found carers were not always told about treatment consequences or details of care options, negating the possibility of shared decision-making for patients and their carers. 38 Carers felt that they had to be demanding in order to receive appropriate care, which they found stressful and frustrating:

The surgeon never warned her of the consequences of doing radiation in the surgical area. As a result she has a hole in her shoulder … that will never heal. So that’s part of my job is to replace the dressings on that everyday.

(Parker Oliver et al., 2017,51 p. 652)

You did not know what was going to happen the next day, what examination he would have or anything.

(Pusa et al., 2012,54 p. 37)

Other carers did not understand the acronyms used by health-care professionals with implications for disease labelling/recognition, trajectory and management. Carers noted that educational interventions are focused on the patient, with limited information for themselves. 36 This made them feel vulnerable and unprepared, causing unnecessary stress as they worried about the significance of new symptoms:

I looked it up and then to be honest just lately I am just wondering how much of it actually is emphysema and because again, it wasn’t really explained.

(Hynes et al., 2012,41 p. 1071)

Information on mental health services could also be lacking, with some carers reporting that they needed support but did not know how to access this:

So, I don’t really know whether I really need to talk to psychiatrist […] I don’t know what they … would it be psychologist or whoever they provide just to help people get through it. I don’t know what I’d say to them (…) Sometimes you’re just sort of reaching for something, but you don’t know what.

(McDonald, 2018 et al.,45 p. 75)

In cases where information was provided about the patient’s condition, it could be given in a condescending manner or directly to the patient who may not be able to understand or retain the information. 61 Time pressure and lack of resources meant that health-care providers were short of time and could also lack sensitivity when delivering information which could be distressing for the carer:

The neurologist here said to me, ‘Be happy, (if) you don’t know what’s going on, then you won’t have to get upset’. I raged when I heard this; then I already knew through the Internet that it could be a Glio IV and it was pretty clear to me what the consequences would be. It was totally idiotic to say to me, ‘Don’t worry’. That was the worst, this information block.

(Wasner et al., 2013,61 p. 85)

Suddenly, during a 5-minute talk with my mother in the corridor, she was told that a new tumor had been discovered and that she has to be prepared that dad has 4 months to live. I just can’t understand that.

(Wasner et al., 2013,61 p. 87)

Carers wanted honesty from health-care professionals to enable them to face the reality of the prognosis, know what to expect, support the patient and allow them to prepare both practically and emotionally for their patient’s death:

Nobody said, ‘Your mother has progressive heart failure and is going to die’. I think consultants need to be honest, stop being afraid, if your loved one is dying, then say it.

(McIlfatrick et al., 2018,46 p. 886)

Cultural barriers, such as when the carer did not speak the same language as the health-care provider, can also be problematic. Participants’ resistance to using an interpreter may further hinder support. 40

1.6.2 Lack of collaboration between health professionals and carers

Whitehead et al. 62 describe how health-care professionals may not collaborate with patients and carers when planning patients’ care. For example, one bereaved carer described her distress around the complete disregard of her husband’s wishes by health professionals when he was admitted to the local hospital in an emergency:

… I showed him the part where it says in the event of serious collapse, the patient does not want to resuscitated, but the A and E doctor said ‘well it’s not worth the paper it’s written on, what are you talking about?’

(Whitehead et al., 2012,62 p. 372)

Other carers spoke of the knowledge they had built up over time in providing care at home but which was not acknowledged by health-care professionals. Carers felt they were not seen as an essential component of the EOL care team. 60 This made them feel disempowered and frustrated that they were not being listened to:

It’s so frustrating when she goes into the hospital and the nurses and the doctors say it’s her condition, you know. I’m like I’m with her twenty-four hours a day, I know how breathless she is without infection and I know how breathless she is with an infection and there’s a major difference.

(Hynes et al., 2012,41 pp. 1072–3)

1.6.3 Inadequate professional support

Carers reported that they did not receive adequate nursing care for patients at the EOL, which left them exhausted and overwhelmed:

It just got very difficult as far as the amount of help that we could get (…) The restrictions on the hours that we would get a month when you’re dealing with somebody that has cancer of the brain and you know you’re dealing with behavioural and mobility problems …

(Brazil et al., 2010,31 p. 113)

Inadequate pain management was also an issue, with carers feeling dissatisfied and angry with how the patient was treated and distressed by their unnecessary suffering:

My wife was in pain for a long time. No one turned up.

(Shanmugasundaram, 2015,55 p. 540)

Carers also experienced anxiety when patients came home from hospital with no support or instruction on how to care for them:38

When he comes home ‘No’, there’s nothing in place. Now I lost it when he came home, I just exploded. Burst out into tears and really got very upset.

(Fitzsimons et al., 2019,38 p 16)

When carers did receive support from health-care professionals, this was often described as poor quality, with carers reporting feelings of disappointment and anxiety, sometimes sensing that professionals saw patients as a burden and that their compassion was not genuine. 54 For example, carers reported that professionals lacked empathy or were rude, while private carers were often unskilled in palliative care. 62 Some carers also felt that more education and training were needed for health and social care professionals:47

one of these ladies would come and stop through the night so I could get a night’s sleep … but it didn’t work really, … she got me up anyway […], I don’t know if it was more than she expected …, but it didn’t go according to plan.

(Whitehead et al., 2012,62 p. 373)

Practical support was also described as being too late. Nursing care is often offered in the very final stages of the illness, which can mean that staff struggle to become accustomed to the patient’s needs and the carer can find it difficult to adjust:

he got it but he didn’t live long enough to get anything from it, really it should have been brought out six months before, probably more care at an earlier stage and for longer than that, … the continuing care came in too late.

(Whitehead et al., 2012,62 p. 373)

When carers were experiencing poor mental health, the health-care service did not provide adequate psychological support. This meant that the carers were more distressed and less likely to cope with their role:

I was left alone. There was no one to be concerned about me. I did not receive any mental support as a husband. I was really very upset about this.

(Shanmugasundaram, 2015,55 p. 541)

Negative experiences with the health-care system also meant that carers sometimes refused support from health-care providers when it was offered:

at the end, and the doctor said ‘shall we get him into hospital? And I said ‘no’ (…) I couldn’t let him go into hospital, knowing how much he hated it and how he was poorly cared for.

(Whitehead et al., 2012,62 p. 373)

1.6.4 Disjointed care

Carers reported confusion about the number of different health-care professionals they interact with and the lack of coordination. Most patients had comorbidities and were receiving specialist care from multiple disciplines, making caring for them at home more complex. Carers felt passed around different health-care providers who often gave conflicting advice. Delayed or irregular medial reviews with specialists were also reported, resulting in poor symptom management which caused further stress for the carer. 47 Villalobos et al. 57 also describe how lung-cancer patients and carers were sent to numerous physicians, without receiving clear answers or open communication, leaving them feeling left alone, often with a sense of ‘shock’ and ‘disbelief’ (Villalobos et al., 2018,57 p. 3).

In addition, appropriate communication with and access to other professionals, e.g. social workers or occupational therapists, may be missing or delivered ad hoc, which meant carers may be unaware of accessible services until there is a crisis. 47 Carers felt frustrated and wanted a more coordinated approach to their interactions:

I think sometimes one hand doesn’t know what the other hand is doing … because I mean I have phoned up about things and its pass-the-buck sort of thing.

(McLaughlin et al., 2011,47 p. 179)

1.6.5 Lack of informal support

Poor mental health can arise when a carer lacks family who can provide practical and emotional support. This lack of support can cause conflict and feelings of resentment towards those who did not help:39,40,43

Sometimes I tell my husband’s brothers and sisters, but they don’t help me. Sometimes they get cranky to me … So I keep it inside my heart you know. I can’t talk with someone.

(Heidenreich et al., 2014,40 p. 281)

Other carers reported that family are too busy to offer support or live too far away. 55 For example, Chinese carers living in Australia expressed how isolated they felt as they missed their family care-related culture where children often remained in the family home and were therefore able to provide support:

She [my mother-in-law] got two other daughters, but they all working and they’ve got kids at school so they can’t come to care for mother and help me

I am having a big depression and loss, because you have to care single-handedly (…) having to shoulder all these responsibilities the pressure is becoming heavier and heavier …

(Heidenreich et al., 2014,40 p. 279)

Some carers described how friends started to visit less as they were unsure what to say, felt uncomfortable or wanted to remember the patient as they were. 31 Conflict and stress could arise when friends did not ask about the carers’ well-being, offer assistance, or invite them to join activities outside of caregiving. 60 The carers’ sense of loss increased as their social network became smaller:50

I don’t find my friends calling me (…) I would be dishonest if I didn’t say I’m starting to get a little pissed off. Yeah, I know that I am not supposed to feel that way (…) I am just feeling down and depressed … I have never ever expected anything from anybody, but a telephone call would be nice.

(Ward-Griffin et al. , 2012,60 p. 503)

2.1.1 Time for respite and treats

Carers reported techniques for managing negative emotions that were often self-directed or a result of their own internal processes. For example, taking time for respite played an important role in reducing anxiety, depression and exhaustion. It was important that this time was spent building adaptive coping strategies, finding activities that the carer found rewarding or reviving, including work, meditation, reading, exercise or the ‘opportunity for solitude’ (McDonald et al., 2018,45 p. 75).

Meditating a lot helped me to take apart the negatives and see the positives in it (…) First thing, I was like I want to go get a salad, and I wanted to go running.

(Williams et al., 2017,63 p. 240)

In addition to respite, some carers recognised the need to take care of themselves, so they could continue to take care of their patients, for instance, making sure they exercised, attended doctors’ appointments and had checkups. 37

Treats played a role in maintaining good mental health and ‘lifting spirits’ (Walshe et al., 2017,59 p. 12). For some, this took the form of increasing the frequency of activities that would usually be regarded as luxuries such as a ‘going out for a nice lunch’ (Walshe et al., 2017,59 p. 11). For others it was behaviours that demonstrated thoughtfulness, or giving gifts to the patient, which they reported increased their own feelings of well-being. Carers developed strategies to include low and non-cost ‘treats’ even where material resources were very limited:59

I think I’ve tried to be a bit more attentive, caring … but you know, yes attentive I think is the word, just holding hands and just yes.

(Walshe et al., 2017,59 p. 11)

Another action to reduce stress included understanding personal limits and choosing to reduce the quality of care provided. Carers reported that when they were giving 100%, all other areas of their life suffered. Also, when having a bad day, carers stated the importance of being gentle with yourself:

Because it’s there, I must remind myself that, it’s like you might not manage as much …one day … but you have to tell yourself to try to take it easy, and that this day is like an upside-down day; that it doesn’t feels so good. So it is.

(Pusa et al., 2012,54 p. 38)

2.1.2 Positive self-talk

Positive self-talk, motivational audio recordings37 and thinking about what you still have33 were found to reduce anxiety and depression:

Do we, you know, wallow in our pity and have what time we’ve got together, you know, we are not going to enjoy him, we don’t want to remember it because it’s that down? Or do we make the best of everything and carry on as much as you possibly can, deal with it, being normal as normal as it is to get us through it?

(Walshe et al., 2017,59 p. 9)

2.1.3 Spirituality

Negative emotions associated with the lack of control that EOL care can involve were also mediated by spirituality. This belief in something greater than themselves helped carers to accept the lack of control:

‘I just want peace of mind, nothing else. The rest is whatever God decides.’ I said, ‘So be it. No problem. We’ll do it.’

(McDonald et al., 2018,45 pp. 74–75)

2.1.4 Ignoring own emotions and needs

Carers described ignoring their own needs or denying the situation existed as a strategy to manage their emotions. 63 For example, carers reported being so focused on helping the patient that they had not spent time thinking or processing their own feelings about the diagnosis. 56 Others had to deny their own feelings in order to support the patient and endure the circumstances:

I’m not focused on myself, I haven’t had a think about everything. I don’t allow myself the luxury of doing that.

(Ugalde et al., 2012,56 p. 1179)

Others stated that they had a deep sense of responsibility and although they were struggling with their mental health they had to suppress these feelings in order to care for the patient. Some carers also engaged in excessive exercise or withdrawal from those around them. 63 Although these forms of strategies may help in the short term, this may be an unhealthy way of dealing with stress longer term:

was … on auto pilot… . I was just in motion physically doing what had to be done … trips to the emergency room and keeping my emotions under control and I felt like I wanted just to … break down but I felt like … for my son I needed to keep myself under control.

(Kutner et al., 2009,43 p. 1102)

2.2.1 Professional support

Good-quality professional support had a positive impact on the carer’s mental health. For example, a consistent and accessible GP was a key factor in reducing stress. 62 This increased the carers’ sense of well-being, providing feelings of safety and confidence:

having a good doctor is, is very important. I would have been lost without [name]. He made house calls when [the patient] could no longer get down to his office. And he was here every week. He said I could call him anytime.

(Brazil et al., 2010,31 p. 114)

Carers needed the patient to receive adequate medical treatment and satisfactory care. They felt satisfied and safe when their sick relatives received proper symptom relief and were met respectfully by care professionals. 54 Although very few carers reported receiving a palliative care referral,46 when they did have access to experts in palliative care, they described this as invaluable:

we realized that the palliative care nurse was so different than a registered nurse … had extra training and that was very evident every time they came to our house … it gave us a sense of being looked after.

(Duggleby et al., 2010,33 p. 4)

In addition to practical support, these experts were able to provide emotional support for the carers, offering a reassuring and positive approach which created mutual trust and reduced anxiety. Key elements that were linked to positive experiences included practitioners listening and responding to their needs:37

they had time to talk a few minutes with me also, so I felt I got out a bit out of my frustration. And then it felt easier after they had gone. So, it takes so little in order to give so much, I think.

(Pusa et al., 2012,54 p. 37)

Palliative care nurses were also able to offer a sense of calm and comfort when carers were most vulnerable. They were good communicators and worked with sensitivity, sincerity and compassion:31

Our palliative nurse tries to do her best. Her encouragement is fantastic. She is such a nice lady to us so we are happy. Whenever she comes we are happy.

(Epiphaniou et al., 2012,35 p 543)

He was almost reassured. I don’t know what she said to him (…) she spoke to us all and she was a great source of comfort for all of us.

(McIlfatrick et al., 2018,46 p. 887)

Home care services were also said to be invaluable in maintaining carers’ mental health, allowing time for respite or work. This was even more beneficial when there was consistency in who provided the care. However, some carers were not aware of this support, suggesting that statutory services needed to link with voluntary groups to help inform patients and carers of what is available:47

I have to work, and I thank God that two hospice volunteers from the CHV [home hospice care team] come by while I’m working so that he’s not alone for more than 2 hours at a time (…) it’s always the same helper which is good because he doesn’t like it when new people come, it’s difficult for him.

(Wasner et al., 2013,61 p. 88)

Private carers were another source of support for carers which allowed for time to manage stress:

I have (private caregiver) … I feel like there’s a plan in place if something goes wrong and I’m not as likely to do something wrong that could cause him harm. I realize I’m living with less stress … less adrenaline … I’m getting a chance to slowly decompress.

(Parker Oliver et al., 2017,51 p. 651)

However, carers often waited until they were desperate or experiencing poor mental health before they hired these private carers:

At some point in time I’m going to need some supplemental help and it’s not going to be friends this time I’m going to have to hire some professional help.

(Parker Oliver et al., 2017,51 p. 652)

Mental health professionals were able to offer support to carers when they were experiencing stress, anxiety, depression and insomnia. Telephone counselling services were also valuable, where carers could vent anger and other emotions anonymously and without judgement. This reduced loneliness and also provided answers to any questions they had. The telephone calls also meant this service was accessible to carers who found it difficult to travel or spend time away from the patient:43

there’s things we can’t say to our neighbors, or our family, our kids, our grandkids or sisters or brothers or even parents if they’re still alive? I mean for me there is.

(Kutner et al., 2009,43 p. 1103)

Resources carers also felt would be helpful were easy 24-hour access to health-care professionals for help with acute situations, training in emergency care, occupational therapy visits to help carers adapt to patients’ changing needs, and a list of all resources available in their particular location:44

they (family) should also be given contact numbers of every resource that is available to them, occupational therapy is a big one, for the wee practical things!

(Fitzsimons et al., 2019,38 p. 15)

2.2.2 Accessing information

Accessing information about the patient’s illness was seen as a way of coping and taking control of their situation. If carers were informed and regularly updated, they were more satisfied and less likely to feel overwhelmed. Carers also stated that information needs to be clear and timely in order to reduce anxiety:

I was quite fortunate that my GP helped me a lot and gave me information but without that help I would not know what to do …

(Epiphaniou et al., 2012,35 p. 544)

Support groups were praised by carers as a valuable source of information, and a place to talk with other people who had faced similar situations and realise they were not alone in the way they were feeling:37

Some of your reactions are very normal, and it’s OK to have them.

(Ferrell et al., 2018,37 p 291)

While some carers wanted to know everything about the patient’s condition, others did not want to know too much information in case they could not cope and become depressed. Therefore, information should be tailored to the needs of the patient and carer. 47

2.2.3 Informal support

Carers reported the importance of informal support in maintaining their mental health. This included friends, extended family, co-workers and neighbours. Support could include information, assisting in activities of daily living, household tasks or transportation, and providing opportunities for respite. Carers described how building a trusted informal support team could lessen the strain of caring:42,45,59

… she offered to come over a couple of days just to sit over there with me, you know to catch up on things and she would listen to me on the phone, you know cry a number of times and she was just there to really listen.

(Brazil et al., 2010,31 p. 114)

Friends were described as encouraging when things were difficult, and helped remind the carers of happier times. Accessing this emotional support felt necessary for the carers in order to endure their situation. 54 Some carers were unable to express how they were feeling to the patient, therefore friends were a comfort and someone they could share their feelings with:

Friends distract you for a while, we talk, then cry, then talk some more. We draw on happy memories and imagine a time when there will be no more death and sickness.

(Penman, 2018,52 p. 249)

Some carers reported that being in small or rural communities offered more support when compared to living in a city:

One thing I’ll say about it all, like being in a small community, it was help in a sense to know that we had neighbors who we could call if we were in trouble.

(Duggleby et al., 2010,33 p. 4)

Being thanked by others was also encouraging and protective against poor mental health:

When she thanks me for what I’m doing and appreciates what I’m doing for her. And calls me her rock. That’s enough

(Ugalde et al., 2012,56 p. 1179)

2.2.4 Religious community

Spirituality was another aspect that had the potential to protect carers from psychological morbidity. Spiritual beliefs helped carers to cope and feel less isolated:52

I think my biggest help comes from the Lord though.

or

I work through it – through the power of God.

(Williams et al., 2017,63 p. 240)

Carers also described the support that they received from the church community37 and how this protected them from the stressors and challenges of caregiving:

We had church fellowship, prayers and communion. We get this love and support from family and friends. We prayed…. There was no time or reason to be depressed.

(Penman, 2018,52 p. 248)