Article Figures & Data
Figures
- Figure 1. Flowchart: recruitment of participants
Tables
Sample interview questions A . Can you tell me how your family member is doing now? B. How did you experience the period of ICU admittance? C. Can you describe how you have experienced the period directly after ICU discharge? D. Compared to the period before ICU admission, do you feel different about yourself, mood-wise? E. Do you encounter other complaints since the ICU admission? For example, physical complaints. F. How do you encounter previously mentioned topics in daily life? G. Are there any topics we have not discussed yet, but could be relevant? Bodily functions Mental functions and perception Spiritual or existential dimension Quality of life Social and societal participation Daily functioning Medical facts Cognitive functioning Meaning or meaningfulness Quality of life or wellbeing Social and communicative skills Basic ADL Medical observations Emotional state Striving for aims or ideals Experiencing happiness Meaningful relationships Instrumental ADL Physical functioning Esteem or self-respect Future prospects Enjoyment Social contacts Ability to work Complaints and pain Experiencing to be in charge or manageability Acceptance Perceived health Experiencing to be accepted Health literacy Energy Self-management Flourishing Community involvement Resilience, sense of coherence Zest for life Meaningful work Balance Participant Sex (M/F) Age, years Children, n Diagnosis of patient Time since discharge from ICU A F 59 2 Ruptured aortic aneurysm 1 year 3 months B F 30 None OHCA 9 months C F 63 1 Respiratory failure 10 months D M 61 None Respiratory failure 8 months E F 58 2 OHCA 8 months F F 55 2 Respiratory failure 3 months G F 50 3 OHCA 1 year 5 months H M 55 3 Respiratory failure 1 year 7 months I F 56 2 Respiratory failure 10 months J F 47 2 Polytrauma 9 months K F 73 2 Cardial ischaemia 1 year 10 months L M 77 3 Aortic dissection 3 years M F 46 2 Subarachnoid haemorrhage 1 year 5 months OHCA = out of hospital cardiac arrest
Theme Sub-theme Example of found problem Representative quote Physical health Energy Tiredness 'I’m very caring. I like to care. But sometimes it comes at the expense of myself and that expresses itself as tiredness.' (D) Sleep problems 'I don’t sleep instantly. First, I have to be sure he [the patient] is sleeping. Then I dare to take a nap. Usually that’s not until the morning.' (C) Complaints and pain Neck pain 'Stress! Tenderness! It started to accumulate in my neck and shoulders. Therefore I received physiotherapy for, I think, three months. It crept in without me being aware…' (B) Headache 'At some point, I got a sort of headache and neck pain...' (G) Feeling sick more often 'In two months I’ve been sick four times, like a sort of flu, with a terrible headache, nausea and vomiting, which I usually never have. I never have headache. I just didn’t understand, until I realised: maybe it’s a manifestation of…' (A) Chest pain 'One time, I went to the GP because I had chest pain, within the heart region. I thought: It’d be better to have it checked before I collapse as well.' (M) Medical observations Weight changes 'At the moment I weigh 63.8 kilograms. Last year I weighted 76. So that’s 13 kilograms less.' (C) Mental health Cognitive functioning Amnesia 'During the holidays I bought the kids tickets for the theatre. Great show. Very expensive tickets. And I just forgot. With all the hustle … The children were very sad and upset. I felt really bad about it.' (M) Emotional state Difficulty expressing emotions 'When he [the patient] is very sad, it makes me sad as well. Then I want to cry, but I block. That’s because I’m afraid to start crying and won’t be able to stop anymore … Since there’s so much which still needs to be processed.' (I) Stress More stress 'Just restlessness. 24 hours of restlessness.' (E) Depressive feelings More depressive feelings 'Cleaning the house. I don’t feel anything for it anymore. I don’t care anymore. I take one day at a time, or I don’t take any.' (C) Anxiety Fear of recurrence 'If she [the patient] is in the bathroom a little long, I go upstairs to touch base. It just has become automatic. For all we know, she lies there as I experienced before.' (L) Self-esteem and manageability Shame 'I don’t like the way I behave this way [considering the patient’s body as scary]. I don’t blame him, but I blame myself…' (J) Existential dimension and future Spiritual dimension and meaning Changed spirituality 'Occasionally a little prayer and a Hail Mary really supported me.' (H) Acceptance Difficulty accepting the situation 'Accept it the way it is. It made the situation more bearable and easier, I think. Well, it wasn’t easy, but because of that we managed to get through this.' (M) Future prospects Uncertainties in the future 'When comes the quality time we hope to get some day?' (J) Quality of life Impaired freedom 'We lived very relaxed, everything was possible. Which is delightful if everything goes well, but has turned over completely now. However, it’s not necessarily a bad one. Really.' (A) Relationship and social participation Relationship Impaired intimacy 'Well, you don’t actually have any physical contact, not to mention sex.' (J) Social participation Losing friends 'Now you realise who really is close to you. It takes a while to accept, but you don’t actually realise it until now.' (D) Daily life Hobbies and leisure Recreational limitations 'Taking a nice walk. In Berlin we walked about fifteen kilometres a day. Lovely, isn’t it? You’ll see everything. Well, that’s never going to happen anymore.' (A) Family and home More responsibilities at home 'Look, my husband has become sick and I haven’t, but I’m involved just as much.' (I) Work and financial matters Financial uncertainties 'Financially, we don’t dare to spend a lot of money yet. So sports club I don’t dare yet and swimming neither actually. Soon I can swim in the pond over here, that’s free.' (M) [Owing to M’s patient, who is currently depending on benefit]
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Health problems among family caregivers of former intensive care unit (ICU) patients: an interview study
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