Table 3 Data synthesis by extracting and abstracting findings in common categories and themes

Being shaken following the ICU discharge

Experiencing negative feelings

Astonishment at unexpected news

‘Bad, really bad, no life expectancy... I remember these words, as if they were imprinted with fire’ [R1]

Despair for what has happened

‘The situation is challenging. As relatives, we all suffer with him, every day’ [R1]

Anger regarding conflicting information

‘In ICU I was told that the tracheostomy was going to be removed. In the ward, however, I was told that she would never swallow or eat again’ [R14]

Fear of complications arising

‘I just hope the lung infection doesn’t come back again…he wouldn’t survive another illness’ [R9]

Experiencing positive feelings

Trust in healthcare professionals

‘I have to fully rely on doctors and nurses, also because I’m not an expert and so I have to trust them’ [R1]

Gratitude for the care provided

‘In my opinion he has always been well looked after. I have nothing to say about the care they gave him, I’m just grateful’ [R2]

Returning to our life that is no longer the same

Realising that nothing can be as before

Awareness of the limitations

“I haven't seen him for two months; I can only bring him his clothes once a week and leave them outside the ward” [R9]

“He doesn't walk, he doesn't move by himself, he can't even sign. We're doing the paperwork for the disability pension” [R2]

“For her to eat, everything has to be blended now, there is little to do, that's it” [R14]

“An example: she is no longer able to cook pasta” [R4]

Rearrange the home environment

“I got a stationary bike to allow him to do some exercise. He cannot still climb the stairs” [R9]

Searching for support in providing care

Benefit from community-based services

“At home, we are followed by home care, a nurse visits us. If there are any critical issues, we ask her” [R13]

Enlist privately hired professionals

“As to rehabilitation, I opted for a private service. I called a physiotherapist who is now helping us” [R13]

“We’ve arranged a physiotherapist and a caregiver” [R3]

“A private nurse comes twice a day” [R13]

Changing my life

Change my routine

“At first I ate what she ate, so as not to give her cravings” [R14]

‘When we got home, I used to sleep in the living room so as not to stay too close and bring bacteria or viruses near her’ [R8]

Balance caring with other activities

‘I had to take time off work to assist her’ [R10]

‘I also have to get someone to do grocery shopping so that I don’t leave her alone’ [R11]

Feeling powerless due to the COVID-19 pandemic

Altering the clinical pathway

Early discharge from rehabilitation structure

‘It was a hard blow for her when she was discharged from the rehabilitation hospital – she needed one more month’ [R3]

Access denied to long-term care

‘She is still hospitalized due to COVID-19, she is not accepted in any other facility. I applied but we are still on hold’ [R4]

‘The rehabilitation facility has fewer beds now ... neurorehabilitation, which she would need, is now occupied by COVID-19 patients’ [R7]

Regular check-ups cancelled

‘The first visit with the doctor was put off due to COVID-19. In January, the neurological check was cancelled as well’” [R10]

Restricting family and friends visiting

Patients’ loneliness

‘If she had any friends, someone who could stimulate her…’ [R7]

‘Some colleagues and friends of hers came to the house, but only to the door, no further than that’ [R8]

Missed carer training programme

‘We relatives should have had some training, but it was limited’ [R13]

Thinking about the future

Make important choices

‘Where to place him is going to be a problem because he used to live on the second floor ... a more equipped facility is needed ... I think I will opt for a nursing home’ [R2]

‘I thought that a facility was going to be the right option for her ... she would be looked after by people who are not just company but competent’ [R4]