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Intensive care: Patients' experiences

Sources of support

Many people who had been in the intensive care unit, either because of an emergency or after planned surgery, talked about the support they received while they were in hospital and then at home recovering. People received support from various sources, including family, friends, colleagues, health professionals and from their faith.

Support from family and friends
Many people described the support from family as wonderful, fantastic and overwhelming, and were grateful for the many ways relatives had shown their support: through love, taking time off work, looking after other relatives, providing support to children, reassurance, encouragement and hope. Most people said that it was the love and encouragement from relatives that pulled them through, especially when they felt tired, weak and didn't know whether they would ever get better. Others said their recovery would have taken much longer if they hadn't had a hundred percent commitment from their families through such difficult times. One woman noted how there was always someone from her family sitting by her bedside throughout her stay in hospital and said, 'Whenever I opened my eyes, there was somebody there.' Some said their relatives ensured that they didn't have too many visitors so that they could get all the rest they needed.

 

Her family were her 'rock' during a difficult time in hospital.

Her family were her 'rock' during a difficult time in hospital.

Age at interview: 44
Sex: Female
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My family is what kept me going, you know. Without them I don't know what I would have done. 

You know, like I say, there was times when I was in Intensive Care to start with, I thought, "I can't do this." I can remember lying there and thinking, "Why me?', you know. Why, when there's older people, why has it got me?" I kept thinking, "Why?" like I say, "Why me?" And I did, there were times I thought, "I can't do this." You know, I cried with frustration. You know, I'd lie there and look at that clock going round and round.  

And the days, well, the days and nights just became one, you know. You know, even when the nurses were in and out all the time, it's not the same. It's, you know, they became friends, yes, well, I say friends, but, yes, I suppose they were. But then they'd say to me sometimes, "If you're tired, [name], you must tell your family not to come in." And I used to say, "I can't, because they are my rock." Without them, unless I see them because then I think, "You've got to keep going, you've got to keep going" you know. 

Partners or spouses were particularly important to most people and were said to be the key element in their recovery at home - helping them with showering, cooking, cleaning and any other normal daily activities they couldn't manage themselves when they first came out of hospital. Young people usually got a lot of help and support from parents, particularly their mothers, and found it was best for them to move back to their parents' home, temporarily at least. One woman said that her mother helped look after her, her husband and their new baby when she first came out of hospital. She also praised the support she got from friends. Others noted how friends and neighbours had phoned, sent cards and flowers, and how they particularly valued help with household chores or looking after children if they needed to attend a hospital appointment during their recovery at home.

 

Her mother and her friends helped with cooking, cleaning and looking after her baby, so that she...

Her mother and her friends helped with cooking, cleaning and looking after her baby, so that she...

Age at interview: 35
Sex: Female
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The Sunday she [mother] came round again, she cooked and she cleaned, for the whole week she basically was just in and out of here as well as what, my Dad had travelled actually so he wasn't at home. And so she came in every day and bathed him [new baby] and she actually missed a day. The day that she did miss my friend phoned me and I said to her, well my mum can't come round today because she had to go to some meeting. So she asked if there's anything she could do, so I said, "Well come round and you can bath him for me." Because although if I had to, I could bath him, I really wasn't strong enough and I didn't want to bath him yet. 

So she came round and she bathed him and she fed him and he, you know, he is a good baby in the sense that, as long as you bathed him, you fed him, you cleaned him, he would sleep. And that's what he did. Right up til now, that's what he does, when you know you feed him, you bath him, he just sleeps so he wasn't much of a trouble.

So for the first two weeks my mother was helping me. I had some friends who came round and helped me with him. I had friends cook and my husband would go pick it up and bring it home, so the family had something to eat when my mum couldn't do anything. I had, you know, major support. 

And so I slept as well when they did things like in the day, I would sleep in the day and look after him at night. 

Support from health professionals
Some people recalled the support they received from physiotherapists, psychologists, nurses and other medical staff while they were in hospital. Several said they'd never forget what health professionals had done to help them recover from critical illness. Those people who had no relatives or close family nearby wanted to draw attention to the important role health professionals, especially nurses, had played in their recovery and how much they valued their support. One woman said her physiotherapist had 'become a friend' over the months they'd worked together while she was in hospital and as an out-patient when she was back home.

 

He valued the care he received from nurses while he was ill, and wants to help others who have no...

He valued the care he received from nurses while he was ill, and wants to help others who have no...

Age at interview: 66
Sex: Male
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But then carers are the nurses, the nurses are your carers, and people keep saying to me and in Intensive Care literature information for patients is patients/relatives. Well what do you do if you've no relatives? So yes carers are very, very important and I think that the follow up has got to be for patients and carers. And this vision I have of Intensive Care is that if the patient representative is involved from the beginning, the patient representative can get to know the relatives, and friends, and carers, and supporters, whilst the patient is too ill to do anything and offer them help and say, "Well look I've been in that very bed, that bed there was my bed, your husband's in the next bed". Or in my bed". And you can help them get through and you can tell them what you needed, what you longed for.  

Support from spiritual beliefs
For some people, their faith and spirituality were great sources of support, comfort and 'inner strength' while they were ill in hospital and recovering at home. One man said his faith had 'sustained' him throughout his illness and recovery, another that he believed his survival and recovery was 'a miracle from God'. Others said they'd particularly relied on their spiritual beliefs during times of uncertainty, such as before surgery, and when they couldn't communicate or move in ICU. Some also said their experiences of being ill had strengthened their faith in God or in their spiritual beliefs.

 

He got through his illness with the help of family, friends and the power of prayer.

He got through his illness with the help of family, friends and the power of prayer.

Age at interview: 72
Sex: Male
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And I understand that I knocked on the pearly gates a total of four times but I'm still here. And apart from the care and attention of my wife and my family and prayers from the church and friends in different bowling clubs from as far away as Australia quite frankly, I think that this has helped me get over the trauma of the operation, not that it worried me. I had a problem. The doctors were seeing to it and I just have to go along with it.  

Most certainly the power of prayer. I'm not advocating that every patient sort of goes and clings to a church group or something like that but we've always been churchgoers anyway. I've been associated with church choirs ever since I was about fourteen years of age. But I would certainly suggest that family support is a major priority and when I say support I don't mean the financial side or the crying side. It's basically the loving side of the family and here again I don't want anyone to consider that because someone is ill and just come out of hospital that everything has got to be done for them. Give them a, give the patient a chance to do things for himself. But certainly I think we've both found the power of prayer, not only in our own instance but in instances of some of our friends. It's a weird and wonderful thing. 

Support groups
Some people had found it helpful being part of various support groups associated with their particular illness, such as for heart or spinal conditions, and to talk to others who'd been through something similar. Others noted that they got a lot of useful information at the support group meetings and particularly valued being kept up-to-date about the latest treatments and medication. However other people said they hadn't felt the need to attend any of the meetings but were glad to know that a support group existed for their illnesses. 

As they were recovering at home, some said it would have been helpful if they could have talked to others who'd had similar experiences in ICU, but that they hadn't been able to find any relevant information about support groups specific to ICU. At present, very few support groups exist specifically for people who want to share their experiences of intensive care. Some said that they would have been interested in attending such a support group, even if only for one or two meetings. Not everyone who has been in ICU for an extended stay will want to join an ICU support group but one woman said she would have liked to talk to someone outside the family, though hers had been extremely supportive. She was now planning to meet someone through a friend who'd also been in intensive care.

 

She was looking forward to meeting a friend of a friend so they could talk about their...

She was looking forward to meeting a friend of a friend so they could talk about their...

Age at interview: 47
Sex: Female
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I think it would be nice to have a support group of people who have had the same experience. Because much as friends and relatives have been supportive, they haven't had that experience and don't know. And I have met a young woman recently through a mutual friend, who's been through the same thing. And we haven't got together yet but we have made a date to get together to have a chat. She actually had her experience five years ago, and what she was saying to me is that she's looked since then for someone else who's been through that experience to talk to. But she would really love a support group. And she's still under a psychiatrist after five years because she's found it so psychologically traumatic. I think it will be helpful for us to get together and to talk through our experiences. And I'm looking forward to that, and I know she is. And it would be nice to find other people. I'm sure there must be lots of them. But this other woman said to me that she's looked on websites and things, and the only person she found in five years was someone in America that she's corresponded with. And I actually only live a few streets away from her. So it was just one of those bizarre coincidences that we met. But I'm looking forward to seeing her and I think it will be helpful to both of us.  

One man said his ICU experiences had led him to want to help others who'd experienced something similar, and he was keen to set up an ICU support group in his area.

For more information about ICU support groups see our resources section.

Last reviewed August 2018.

Last updated November 2012.

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