Patients’ POV - challenges of returning home following TSCI: Pre-discharge interviews and follow-up interviews at 1 month and 1 year after discharge from hospital rehabilitation

Overall aim
Explore patients´
expectations, wishes and worries before discharge
experiences one month and one year after discharge from hospital rehabilitation.
Describe characteristics of positive versus negative life situations 1 year after discharge.

Methods
Qualitative Interview study
Participants; Eight persons with TSCI aged 25-75 years (2 women 6 men), admitted for initial rehabilitation at the Spinal Cord Injury Center of Western Denmark.
Three interviews with each participant (before discharge, one month and one year after discharge).
Each interview (1 hour) were guided by a semi-structured interview-guide
The transcribed interviews were analyzed according to inductive content analysis.
Categories were identified in order to describe the main elements of the patients´ expectations and experiences.
The transversal analyses condensed the categories identified into an overall theme.
Before Discharge Interviews
Aim: explores patients´ expectations, wishes and worries before discharge.
Findings:
Categories of barriers and problems identified:
"Facing uncertainty when leaving the rehabilitation center and peers”
“How will it be to return home, when I´ve got used to the safety at the center, it (the center) is kind of a “school” , everything is organized and scheduled …returning home it not the same, there is nobody to take you by the hand"

“Hoping to get back to work and safe economy”
“I really need that there is a safety net, when I return home, that I have a trusting relationship with the municipal system, and that I can reach out if I need it… So it must just be in place before I come home… I really need them to understand what is going on… I have much space and love in our home and for my children; this is not the problem; the problem is just that I need time for myself, too…; time to become better, and they must help me with that”.

“Needing understanding from the community”
“Strange, but I accepted it immediately… as a new situation; of course, it is shit, but now one must get on from here…. I hope she (wife) will stand it...It is a very big change for my wife …It will be a hard time for my wife, it will”.

“Relying on resilience of significant others”.
”I would also like to go home, but at the same time I know that as soon as I’m home, then there are some expectations; so, people will say: hey, you are looking good; it’s great that you are completely well again…, but I have some hassles ..."

The overall theme was “Close Relations” (to partner, children, parents, family in general and close friends).

Conclusion:
The findings indicate that professionals need to diligently address patients´ close relations and to initiate dialog with patients and their families on how SCI may impact close relations in order to promote a good life on new terms.
One Month after Discharge Interviews

Aim: explores patients´ first-hand experiences of returning home.
Findings:
Categories of patients´ experiences:
“The body as a fatiguing time-consumer causing dependence”
"Well, my partner don’t really understand it either… there was one morning when I was running a little late, my partner had actually almost finished eating breakfast and I had even skipped showers that morning because I thought that today I would have my morning coffee together with my partner and then I couldn’t do both, well… But then my partner hinted that things really took long … I feel that I am always lacking behind… and I don’t like that; I never used to be like that”.

“The need for timely cooperation and collaboration”.
”I had hoped that I could start before… because I felt that going from training a whole lot to being responsible for my own training … that was really difficult… and I very quickly tightened up. And I had so hoped that I could start training, but… that was not possible… and then it took … three weeks; I felt as if everything was coming to a stop”.


The overall theme highlighting the experiences of returning home was “Timing” .

Conclusion:
Patients´ early post-discharge period is complicated by lack of timing in establishing training possibilities and providing equipment needed. The individuals experience setbacks, which impose a burden on the patient, and relations and threaten hope for progress.
Patients´ early post-discharge situation harbours an inherent conflict because the municipal healthcare service seems to prefer to adapt its service provision to a needs level where optimal progress has already taken place; yet, patients´progress may hinge on the availability of training facilities, housing modifications and aids provision to support such progress. The present study strongly suggests that careful timing is necessary in the transition process.