Six main themes were generated following thematic analysis of the transcripts: ‘adjustment’, ‘transitions’, “the golden opportunity”, “when you can’t eat”, ‘communication’ and “in the hands of the nurses and doctors”. The last of these main themes had three sub-themes; “This is it…and you’ll have to accept it”, ‘staff contact’ and ‘personal kindness’. Each of the themes will be detailed in turn with supporting quotations from participants who were given a pseudonym to allow anonymised reporting.
Theme 1: Adjustment
Participants reported having to make a significant adjustment to their injury and physical limitations. The theme of adjustment encompassed survival in the acute stages, through longer-term physical changes and psychological adjustment, and support for this by family, friends and external organisations.
For many of the participants, early memories post-injury were blurred due to the need for sedation during this period. Family members were able to memories with their narratives about the time immediately following injury. Survival was a key goal in the early adjustment to a traumatic injury. Ryan’s parents feared the worst as they travelled to the hospital after his accident and waited while he was in surgery. Knowing that death was a possible outcome helped to come to terms with the alternative reality of living with a spinal cord injury:
“When he got to hospital, everybody was ready. Apparently, I’ve heard since that he had pretty much the best team available and everybody was available. He was in surgery for a very long time. Nobody thought he was going to survive…They were taking it hour by hour.” (Ryan’s mother)
Paula could not remember what happened after her injury but reported being told about the events of her accident by her friends and family, and her account shows she understood how serious and life-threatening it had been:
“They told me that a policeman saw me, gave me mouth-to-mouth...The ambulance came, they resuscitated me. I think I was breathing until I got to the hospital, then I stopped…they gave me oxygen…I don’t remember waking up…I couldn’t move anything apart from my eyes…That’s how I was communicating, I think I would blink for yes, look up for no. That was for a few days…My family told me they said I wouldn’t survive.” (Paula)
For some, the relief of surviving was overshadowed by difficulties adjusting to a huge life change, such as the need for ventilation, as Margaret explained:
“I didn’t understand anything about ventilators, and I couldn’t really come to grips with all that at all. In the early stages I didn’t really ask questions, and then afterwards I did, and began to understand all about it and what sort of ventilation and all the rest of it, but I didn’t at the beginning…I realised I was lucky to be alive, and just stayed like that, keep still and nothing else awful might happen.” (Margaret)
The early post-injury time emerged as an intense experience for participants and their family members, as they had to quickly come to terms with a life-threatening injury that would have life-changing consequences.
Theme 2: Transitions
The theme of transitions relates to the experience of changes to care settings, which sometimes occurred multiple times during participants’ hospital journey. The first location of care was a trauma centre with intensive care staff focusing on survival. Post-acute care was expected to take place in a rehabilitation or specialised spinal unit. The transition to different environments meant that participants and their families had to develop an understanding of new processes, systems and staff through observation and questioning. This caused distress especially in unfamiliar hospital environments:
“[Hospital 1] was the most awful place on this earth. Dreadful. Everybody was in green scrubs, so you didn’t know who was who…There just seemed to be all these masses of people. They didn’t take any particular interest in you. You know, in green. Nobody could answer any questions.” (Keith)
When transfer to a specialised unit was delayed due to limited bed availability, participants would instead be transferred to a non-specialised unit to wait until a SIU bed could be arranged. Participants and their families had no control over or understanding of the processes involved but were aware that their high-level need for respiratory support restricted access to a SIU:
“It was okay in [Hospital 1] they were not equipped to deal with spinal injuries. The plan was to transfer me to [Hospital 2], so, six months went by with no progress. They then decided to transfer me to [Hospital 2] ITU. There was no procedure to get to a specialist spinal unit…they didn’t have a ventilated bed…the goalposts changed, with the spinal units being divided in deciding various criteria to do with breathing and capacity (Roger)
After waiting for a bed at a specialised unit for many weeks, some participants were suddenly transferred at short notice without preparation. Despite anticipating the transfer, the process of transition was no less challenging for participants’ and family members:
Coming to [the spinal unit], George was not prepared for it. You were never explained about your spinal injury…you weren’t prepared for the shock of actually seeing patients in wheelchairs or told that there is a possibility you might need a wheelchair either permanently or temporary, whatever the outcome would be. (George’s wife)
Participants felt there was a lack of information provided to them by staff, which would have helped them to prepare for the transition into a new setting.
Might have been nice to have had a team because then they could have explained to me the ethos a little bit more, to just explain how it all worked…then I wouldn’t have found the adjustment as difficult. I think that's something they could do here. Because they must realise the way it's done at the beginning is slightly strange. It's probably not like many other hospitals, and when you're ill anyway, that sort of thing can be very odd. (Margaret)
Many participants and families expected staff levels of skills and knowledge to be similar across hospitals. When they became aware of variations in different units, this generated anxiety about the care being delivered. Some family members took charge by increasing their own knowledge of care needs required to ensure safety:
I mean, the spinal side, they had no idea…it was a poor handover between [Hospital 1] and [Hospital 2]. They tried to change your ventilation as soon as you got there. I had a feeling that… the nurse who actually took the handover didn’t really…listen, because the first thing, when I went in, he was up quite high in bed…and I said, “Excuse me, can I ask what angle he’s at?” So she told me “we keep all our ventilated patients…” I said, “Sorry, but George is not a ventilated patient, George is a spinal patient”. So she then was flicking through all the pages, and the bed went down. (George’s wife)
In summary, participants reported experiencing several transitions from trauma units to non-specialised facilities, then to specialised spinal rehabilitation units with little or no information to prepare them. They attempted to increase their own knowledge to protect from further distress.
Theme 3: “The golden opportunity”
Participants and their families described losing out on specialist rehabilitation that could have improved outcomes following SCI. Specialist input was needed to help the recovery of those with speech and swallowing difficulties. Simon had waited over a year and remained without speech whilst cared for in three different units. Together with his wife they were still hopeful that he would get into at a spinal unit to access specialist rehabilitation to help progress his communication skills:
“He was always…second on the list...Absolutely had to go to a spinal unit, because he wasn’t talking and I just knew he could. I don't know why I knew he could. I just knew he could speak. I also knew he needed the chance. He needed the opportunity, and he needed to go to a specialist centre that would do that. He was promised the spinal unit, and I just thought, ‘You keep to them [promises]. You put us on a list.’ He needs to have specialist treatment from people who know what they’re talking about with spinal injury and I’m not giving up until he’s had that…there was a golden opportunity, absolute golden opportunity, and it appeared to be slipping away out of our hands. Again, it all comes down to the desire for Simon to be able to speak.” (Simon’s wife)
After 4 weeks of rehabilitation in the spinal unit, both Simon and his wife reported dramatic improvements in his speech, confirming her belief in the value of specialist rehabilitation to regain these functions to help him make his own decisions:
They poked and prodded and did all sorts of stuff to you in the first 24 hours. Now you’re speaking, aren’t you? You’re off the ventilator 12-14 hours a day, cuff down, speaking. You’re much more in-charge of your own destiny. [Simon’s wife]
Ryan transferred to a spinal unit 3 months after his injury, having previously been in two non-specialised units. He quickly noticed the difference between settings in terms of staff knowledge and rehabilitation input, which made him realise this had been lacking previously:
“Very more intense and busy (sic). The physios…are more knowledgeable, and they’ll timetable. Never had a timetable before. So even if it’s not just physio, I’m busy doing other things on my timetable, every single moment. They keep me very busy.” (Ryan)
Arthur was the only participant who was not admitted to a specialised unit and instead was transferred directly to a residential home after 8 months in hospital. Both he and his wife describe the consequences of not having had specialist rehabilitation on his upper limb function:
My hands. Well, they didn’t do nothing in [Hospital 3]. When I got here [residential unit], every day they were putting my splints on, but they didn’t do no good. (Arthur)
His wife added:
They were hot on chest care [at Hospital 3]. They were the best you could ask for. And his hands just went by the by. Because he couldn’t move his arms either, I think they were thinking, well, why bother with them? I mean, he knows he isn’t going to walk, but that does upset him that he can’t use his hands. (Arthur’s wife)
In summary, participants recognised the value of specialist spinal rehabilitation input to achieving improved function. However, their experiences highlight their concerns that delayed access might have reduced their only chance of improvement and recovery.
Theme 4: “when you can’t eat”
All the participants in the study were nil by mouth for a period of time after their injury due to a diagnosis of oropharyngeal dysphagia. Many had reported that they did not understand the reason for their swallowing problems and were distressed when told that they may never be able to eat again. They reported how staff used different methods to evaluate swallowing ability, and this caused confusion about how the prognosis was decided. Keith’s wife recalled him failing multiple swallow tests, adding to their frustration:
“…they had tried giving you the swallow test with that blue dye, hadn’t they, several times at [Hospital 1] and it had come through…going down into your lungs…They just did so many tests, and they said, “Well we’ll see if you are strong enough to swallow now and things,” and they’d say, “Oh no.” And each time we got our hopes up, didn’t we, and then they’d say, “Sorry, nil by mouth still,”.” (Keith’s wife)
Arthur’s wife felt these tests were not refined enough to be the basis of life changing decisions, and challenged their findings:
“The swallow nurse come round and they done the water test. Well, they had a bit of water and a bit of orange squash…but he’d got a chest infection at the time, so when he got it and he coughed…I mean, I still say we don’t know whether he was coughing because he was swallowing, or coughing because he…got a cough. But then they decided that was it, he was never going to eat again or drink again.” (Arthur’s wife)
After being told they were nil by mouth, participants struggled to consider a life without the pleasures of food and drink. Many reported little or no rehabilitation for their swallowing in the early stages, making them feel hopeless, especially as the routine of mealtimes provided structure to their day:
“There was a time when you just passed the days but when you can’t eat, it isn't the same. You know, although eating is not maybe the most important thing to…it's fairly important, even if it's only a sandwich at lunchtime…when that's taken away, it's quite difficult.” (Margaret)
Family members felt equally devastated to consider that one of the last remaining normal pleasures in life was now not possible:
“…but when we asked the consultant, and I said, “But how long will this be before Keith can have anything to eat or drink, or will his swallow improve?” he said, “Not ever”…and that was my blackest day, because Keith loves his food, don’t you? It was really grim. He said, “The swallow is very difficult to come back if that’s where the injury is.” He said, “I don’t think it will.” Which was awful, I thought. You know, everything else had been taken from him. Now just the thought of food and drink has been taken as well, whatever is life going to be like?” (Keith’s wife)
Despite the possibility of recovery being dismissed in a non-specialist setting, some participants had their swallowing ability re-assessed at a specialised unit, many months later, and were provided with specialist rehabilitation to achieve recovery. Simon remained nil by mouth for 14 months before swallowing therapy allowed him to start eating again, whilst Margaret spent 6 months being nil by mouth, wondering if the long wait had been necessary:
“The swallow test I had here [at spinal unit] was lots of different foods and then a big X-ray screen, and so this was the first food I'd had in 6 months, and all these tiny morsels of biscuits and oranges and all sorts of things. And they told me immediately, it was absolutely fine, you know, and I got the feeling that the doctor who was there nearly said to me, “I don’t know why you've been off food for so long.” The way he asked me questions and things, I felt it was all rather a waste of time, but I can’t be sure of that…I do wonder a bit; I think 6 months was far too long. I think there maybe was a time when I needed to be off food, but not as long as that.” (Margaret)
The process of swallow recovery was gradual, with small trials of one texture before adding other textures and increasing amounts that helped to build a sense of pleasure and normality, as Paula describes:
“They [SLT at hospital 3] came more than three times a week. So first they gave me something like three scoops then soft food, porridge, mashed potato, stuff like that. But I soon moved onto normal food. I called my mum to buy me Nandos.” (Paula)
In summary, swallowing problems were an unexpected and distressing side effect of CSCI for participants, as this was their last remaining pleasure linked to normal life. There was confusion about the prognosis when participants had no clear reasoning for the problem, and many expressed huge relief when swallowing problems recovered after receiving specialist therapy.
Theme 5: Communication
This theme included reported attempts to interact with people in the environment, as well as reflections on not being able to talk. Communication with family and staff was a challenge for all participants whilst they could not use their own voice due to the need for tracheostomy and ventilation. Many participants relied on mouthing to communicate, which they reported as effortful and often unsuccessful:
“If you can’t make a noise, you’ve lost the battle before you start…People thought I was getting cross with them, but I wasn’t. I was getting cross with myself because I couldn’t get the message across.” (Keith)
“It was difficult before because I couldn’t make a sound at all. So I had to mouth for ages. Some people can understand better than others but before it was a nightmare”. (Paula)
“I remember not being able to talk. And it was frustrating because I tried to talk, but nothing would come out. I got very frustrated that you [mum] couldn’t understand me.” (Ryan)
Participants reported little early support to facilitate communication attempts, which increased their frustration and families recognised that this made them withdraw from interactions:
“He got really, really annoyed. If I couldn’t understand him after two or three goes, it was, “Forget it, forget it.” I think he tended to sleep a lot when people were there because he couldn’t communicate.” (Arthur’s wife)
Accessing alternative means of communication, such as writing, pointing or keyboard, was challenging for participants due to limited upper limb function. All communication was reliant on mouthing or eye-pointing with success dependent on support and problem solving by the communication partner:
“Just a simple letter board with the alphabet. My dad made us just a piece of cardboard with the letters on and I’d write it down for him.” (Arthur’s wife)
Simon relied on alternative communication for over a year after being unsuccessful at achieving speech because of his ventilation needs, and the low technology aid he was provided with limited him to conveying short pieces of information:
“We were given the E-tran board [low technology aid]. Fairly early on you were taught with whoever it was how to use it, and then she taught that to us, how to use it… That worked very well. Very short answers, and if we did go with anything longer we started learning we’ve got to write it down.” (Simon’s wife)
As he developed good eye pointing, he was provided with a high technology eye-gaze communication aid which allowed greater communication options and opportunities for interaction:
“We then moved on to the TOBI computer for the special effect, and you were brilliant at the computer but you did get tired with using just the eyes, and stuff.” (Simon’s wife)
In summary, communication in the hospital environment was a challenge for participants and family members, especially in the early stages when situated in a non-specialised unit. Participants used mouthing and low technology aids with reliance on a communication partner to enable them to generate a message. Communication options improved once participants were able to have their tracheostomy removed or adjusted and use their own voice. This usually took place with staff in the specialised spinal unit, although three participants still experienced ongoing communication difficulties.
Theme 6: “in the hands of the doctors and the nurses”
The final theme captures participants’ experiences of being dependent on healthcare staff for information, care and support during their hospital stays. For many this was their first experience of inpatient care, and as their admission lasted many months their experiences changed over time. Consequently, three sub-themes were identified from the data: “This is it…and you’ll have to accept it”, staff contact, and personal kindness.
- “This is it…and you’ll have to accept it”
Coming to terms with a life-changing prognosis of permanent disability following CSCI was often recalled as a negative experience, with compassion from staff not guaranteed. Participants and family members vividly recalled specific events and the strong emotions these prompted. Arthur’s wife commented:
“The doctor turned round and said, “Of course you are not going to walk again. If you were going to walk again we’d have known that after 6 weeks.” and he walked out. And I hate that doctor for the way he said it. I mean, Arthur was upset anyway. And I’d got it in my head he wouldn’t by then. But to be told like that.” (Arthur’s wife)
Keith remembered when a doctor told him very directly there was no hope for recovery:
“They said to me, “This is it” he said, “no eating, immobile or anything else. This is it.” He said, “And you’ll have to accept it”. (Keith)
He further recalled the discomfort of being nil by mouth, with some staff providing relief for his dry mouth while others enforced a no-water policy, not trusting him to spit out any residue:
“You [were] very fortunate if you had any mouth care…Well, I used to plead for some water, but they wouldn’t give it to me…I was saying, “Let me have a mouthful of water, I’ll swill it round my mouth and I’ll either spit it out or suction it out.” And some would agree to it, some of them wouldn’t. And one night, this was the crux point for me, they came in and I said, “Could I have some water, my mouth is dry?” The nurse who’d come on for the night shift said, “It says nil by mouth, and that’s what it’s going to be”.” (Keith)
- Staff contact
Participants relied on healthcare staff to deliver care and provide them with information on their progress. Some participants reported having complete trust in their teams and did not feel they could challenge or question their actions:
“I just put my hands in the hands of the nurses and doctors…because when you are in a hospital you just basically rely on what they do…I knew nothing and was just in their hands and hoping that they knew what they were doing. Trusting them.” (George)
Both positive and negative experiences were reported, especially linked to the lack of consistency in staffing, which affected continuity of decisions and clinical progress:
“There was one doctor who was really good and explained in normal words. Whereas sometimes you know what doctors are like and they explain in doctor words, it was like…but then a nurse would come up and say, “Well what they meant is…”.” (Arthur’s wife)
“Every so often somebody would appear who was obviously a consultant, who would say, “Next week you’ll do this, you’ll do that.” Next week came and went, nothing happened. Because they were on this rota system, and a different consultant would be in charge every week…So you only saw the consultant every fourth or fifth week, by which time I’d forgotten what they’d said to me in the first place.” (Keith)
- Personal kindness
Many participants recalled positive experiences with staff who showed kindness. This sub-theme highlights the relationships that evolved over time, creating a personal approach to care. Personal kindness had a lasting and positive impact on participants as they tried to navigate an alternative existence over many weeks and months. Keith’s wife felt she was acknowledged as having her own needs after spending every day in the hospital:
They were super. It was such a contrast…because if the tea trolley came round, they would give me a cup of tea…one of the staff nurses said, “There’s always things left over. To save you going home and then cooking a meal, would you like to have what the patients are having?” So I said, “Well that would be lovely, but am I allowed to do this?” and she said, “Well it’s only going to be thrown away.” (Keith’s wife)
Ryan and his mum experienced caring that went beyond his physical needs, creating an unexpected friendship:
He made such good friends…they kept popping back and then they’d see him. In fact, one of the nurses took his trache out…She was on a course, I think, that day and it was due to start at 9 o’clock. She said, “No, that’s the first thing I want to do.” So she came in at 8 especially to do it. She took his trache out and then she said she went away and just called everybody and said, “A brilliant thing, I’ve got rid of the trache.” (Ryan’s mum)
In summary, the behaviour of staff made a significant impact on participants’ experiences of prolonged post-acute care. Communication and contact from staff often set the tone for the overall hospital experience. Kindness was usually attributed to a specific individual and was unexpected. It was a contrast to the daily challenges faced and significantly enhanced the experience of care.