Study design and participants

A qualitative descriptive design using mini focus groups (FGs) was chosen for this study [16]. A purposive sample of SCI survivors hospitalised and rehabilitated at the “Città della Salute e della Scienza” Hospital of Turin was selected from the hospital’s database to consider individuals who followed the same educational programme. To be eligible, patients had to: (i) have a diagnosis of SCI according to the international standard for neurological and functional classification (ASIA), (ii) be 18 years or older, (iii) have been discharged from the rehabilitation centre from 6 months to 5 years before the beginning of the study, and (iv) speak and understand Italian. Nursing home inpatients and people with cognitive impairments were excluded. Ethical approval from the Ethics Committee of the Città della Salute e della Scienza di Torino, Mauriziano Hospital, ASL TO 1, Turin, Italy (Resolution n° 105785/2016—#CS2/28), was obtained.

Thirty-one eligible patients were identified and contacted by phone, invited to participate, and asked to report their level of independence in ADL. In order to create groups based on similar individual experiences [17], patients were assigned to FGs according to their self-reported level of independence: totally dependent (FG 1), partially dependent (FG 2), fully independent (FG 3), and ambulatory and fully independent (FG 4). Although all 31 patients agreed to participate in the study, nine were unable to take part for personal reasons. A final sample of 22 participants (Table 1) attended the FGs and were included in the analysis: 15 men and six women, mainly with paraplegia (n = 14; 64%), with a mean age of 49 years (±15.4) and an average of 4.5 years (±1.7) since discharge from the rehabilitation centre. The majority of the sample was in a relationship (n = 14; 64%) and had a high school education (n = 16; 73%). Eight participants had an active social role (37%), while the majority of the remaining were unemployed (n = 6; 27%) or retired (n = 8; 37%). All participants were voluntary and informed about the study procedure. They provided a written informed consent before the start of each FG.

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Table 1. Sample characteristics.

https://doi.org/10.1371/journal.pone.0240600.t001

Procedures

FGs took place over 4 weeks (one FG per week) in September 2016 in a dedicated room at the “Città della Salute e della Scienza” Hospital. To avoid any influence on participants’ discussion, a separate area of the hospital was set up to host caregivers during the FGs. All FGs were performed once and followed the same procedure: a short trigger movie was shown at the beginning to encourage discussion and a FG guide was used to lead the subsequent discussion (Table 2). Participants were free to interact using their own names if they chose to. To maintain anonymity and confidentiality during data analysis and reporting, a sequential number was assigned to each participant. An experienced moderator (AR) facilitated each FG. Two research assistants, with a background in SCI rehabilitation, were involved as silent observers to take detailed field notes [18]. All the research team did not have previous relationship with participants or were part of the hospital staff. Each FG lasted approximately 80 minutes and was audio-recorded and transcribed verbatim. Debriefings were conducted after every FG to synthesise observations and capture initial thoughts about the topics discussed.

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Table 2. Interview guide.

https://doi.org/10.1371/journal.pone.0240600.t002

Analysis

A thematic analysis approach [19] was applied consistently with the following phases: familiarisation with the data, generation of initial codes, searching for themes, reviewing themes, defining and naming themes, and producing the report [19]. AR, AC, and SM analysed inductively the whole set of data through an iterative process. Verbatim transcriptions of FGs were read individually, thoroughly, and repeatedly to allow the researchers to familiarise themselves with data; coding was developed to create categories and abstractions. After this first step, the researchers met to compare obtained codes and arrange final categories, which were then condensed into themes through discussion. Data collection and analysis tended to be simultaneous, to inform subsequent FGs [20]. The analysis involved two other independent auditors (SC, AB), who further reviewed categories, abstractions, and themes. Data saturation, defined as information redundancy or the point at which no new themes or codes emerge from data, can be hypothetically achieved after three FGs [21]. For this reason, four FGs were conducted in this study. Credibility and dependability were ensured through the use of an audit trail, verbatim transcriptions, and member checking with a subsample of participants [22]. The whole analysis was conducted on verbatim transcriptions and meaningful quotations were translated into English. The study was carried out and reported according to the Consolidated Criteria for Reporting Qualitative Research [23].

Readiness to education

Hospitalisation was the first, unavoidable step on the chronological path described above, and it characterises the acute phase following the triggering event. Participants portrayed this as a phase of utter confusion and distress, when they were overwhelmed by their circumstances and unprepared to receive, let alone understand, information about their condition, regardless of how relevant this information might have been. Participants confirmed that throughout early rehabilitation, they received valuable information, but they were not able to perceive its value at the time. During the acute phase, they dealt with severe emotional distress and lack of willpower, which were amplified by the presence of pain and the lack of physical strength.

I remember that at the beginning, in my catatonic state, I felt really stuck, I couldn’t do anything. Then I learned some mechanisms [of self-management], I tested different strategies [of self-management], and I came to understand that what matters is that I still have a brain and I can still think.

(p#12–FG3)

The achievement of a psychological balance has been described as a fundamental prerequisite to engage in any educational programme, and participants could not arrive at this balance without accepting that SCI introduced a permanent change in their life. A life that, as they expressed, needed to be completely redefined. Indeed, participants recalled how their realisation and acceptance that they would not achieve total body recovery was slow and progressive, although necessary to move to the next phase of a new self-awareness and body recognition.

The problem with people who remain in the wheelchair is that they go on with their life thinking that they can’t do anything anymore. In the beginning, it happened to all of us; then we managed to get up [from the wheelchair] and we saw some light at the end of the tunnel again, but …in the beginning, if you can’t get up and you’re depressed and in a wheelchair, you don’t know if recovery is possible, because the doctors can’t tell you (…) Then, you have to decide to learn how to use the wheelchair.

(p#21–FG4)

Beyond the awareness of their new, difficult situation, participants reported feeling continuous pressure to learn numerous information and skills, in addition to following a wide array of all-important recommendations. This pressure negatively impacted their already low energy reserves which represented a further barrier to education and their ability to understand their doctors’ advice and priorities. Participants agreed that clear goal-planning during rehabilitation is as a resource to help deal with the effort required to prioritise and apply the information acquired. Moreover, they agreed that the information they were provided with during rehabilitation could be fully understood only after they had spent time at home.

You can’t expect that after a year of rehabilitation you will leave [the rehabilitation centre] knowing everything. You may leave knowing a lot of things, but you still won’t have attained all the goals you set for yourself. I have been back home for 3 years, and I still discover new things, some movements; in my opinion, our body is made to recover in its own time.

(p#19–FG4)

Participants often described their learning process as extremely slow and emotionally burdensome due to the absence of any near-term points of reference. Every single day, they faced uncertainty, never knowing what actions might represent progress and relying on trial-and-error to accomplish given goals. Moreover, the fear of failing in self-management or harming themselves led some participants to abstain from specific behaviours, relying entirely on others for the fulfilment of basic personal needs. Several participants expressed guilt for not being independent and having to rely on someone else.

It really destabilises you, (…) you are afraid that you are becoming a child again and starting from scratch, at an age that, at least in my case, is already quite advanced, isn’t it?!"

(p#14–FG3)

Individual characteristics influencing education

Participants said that education was essential to achieve progress in the rehabilitation process. Participants’ experiences converged in the description of education as essential both in the acute phase and at home after discharge, and individual characteristics played an essential role in education. In particular, having strong motivation emerged as a crucial factor in following all provided recommendations. Participants placed great emphasis on the importance of having a personal commitment to overcoming their new condition, and to reinvent themselves in different contexts, in which working, being independent, and being useful were depicted as primary goals.

I went back to my place of work …to the city surveyor’s office, and I stayed on there, working at my drafting table until I retired. Nobody at the spinal unit could believe it. [They] came to see where I worked, what I did, how I handled it.

(p#1–FGI1)

Participants also often used the reinforcing effect of gratification to acquire the knowledge and specific skills they needed to manage their condition, which sometimes led to a tendency to put themselves above all else. At the same time, it was not easy for individuals with SCI to understand how much they could achieve using the self-learning approach, and when and to whom they could refer to get additional help when needed.

I’ve always taken poor care of myself in general. I’ve always been, I shouldn’t say it myself, but generous I am enough towards others and neglected myself a lot. (…) after the accident, I understood I had to put myself first and everything else had to come afterwards.

(p#17–FG3)

Environmental and social characteristics influencing education

Environmental and social characteristics also appeared to have an effect on education during rehabilitation. In particular, the time needed to learn self-management skills was perceived to be excessively long in relation to the complexity of the situation, and participants agreed that they needed more time to be able to adhere to healthcare professionals’ requests. Participants expressed a general complaint towards healthcare professionals who were inflexible and presented information too quickly. They felt that professionals’ time management was mainly based on organisational needs and bureaucracy, rather than patients’ needs, creating additional distress and disorientation. Participants suggested that a possible solution for professionals should be explaining the priority given to certain activities or educational elements during rehabilitation.

They told me to take driving lessons, but I didn’t care about driving anymore, it was the last thing on my mind. I protested, because I preferred to first be independent in washing my face, dressing, not driving.

(p#11–FG2)

After discharge from hospital, participants reported that they were overwhelmed with doubts about how to apply the skills they learned during the rehabilitation process in their real lives, and they wondered if they had really acquired all the necessary information. They reported a lack of continuity between the rehabilitation centre and the community care centres and general practitioners, which were both perceived as less useful. Indeed, participants believed these institutions lacked adequate knowledge on SCI and that the rehabilitation centre was the only place they could to turn to in case of need.

When I have to come here [to the rehabilitation centre], I feel like I’m going to heaven (…) I still come here for physiotherapy, I come to use the pool, and it’s a good thing for me, it’s a fabulous thing to come here.

(p#21–FG4)

Family and loved ones were often depicted as personal resources that participants could count on to overcome the difficulties in their rehabilitation path and as the bridge that connected them with the real world, even when the price was intrusiveness. In the absence of a supporting family, participants reported that it was challenging to have complex needs fulfilled, and they described taking specific self-management information from the Internet or other alternative channels.

Fortunately, my family has kept me busy since the beginning. Really, I did not have time to think, and, in the end, it was a positive thing.

(p#9–FG2)

Participants reported that peers were another important resource in overcoming struggles and avoiding recurring negative thoughts. During the FGs, participants mentioned that sharing practical insights and facing difficulties with peers represented an important opportunity. They expressed their desire to be involved in more group activities or sports, even in early rehabilitation, when their schedule was managed by the healthcare professionals. Participants identified therapeutic trips, leisure activities, and home visits with healthcare professionals and peers as the most effective educational tools they had during early rehabilitation, as those moments were similar to their discharge experience.

Outside is different. Because reality is outside, during rehabilitation you have home visits …I got to have my first one after 4 months (…). I spent the night in my own home for the first time in October. I think that home visits are really necessary, because they make you do the things you need to do …take the car, go outside, so you can see how you can manage yourself at home.

(p#2–FG1)

Limitations

The results of this study should be interpreted within its limitations, including the relatively limited sample size and the sampling procedures. Participants were chosen from the leading rehabilitation centre in the north of Italy, which has long-standing expertise in the diagnosis and treatment of SCI. The inclusion of 31 participants divided into four FGs should have guaranteed sufficient coverage of the set of concerns under investigation [21]. The main reason for refusal to participate was logistical difficulties not directly connected to the study purposes; therefore, sampling bias should have minimal effects on the study results. Even if our participants were from a specific geographical context, our findings were consistent with available studies conducted in different settings. Lastly, although researchers were external to the hospital staff, the location of the FGs could have represented a further bias, as participants may not have felt they could freely express their thoughts and still protect the professionals they dealt with during rehabilitation. This study followed a qualitative design that was valuable in describing the experiences of the participants, although it did not allow the evaluation of the influence of their clinical or socio-economic characteristics on perceived education. Effects of variables such as gender, age, injury severity, and financial status or access to services on education need to be enriched through quantitative studies that might corroborate our findings. Furthermore, as we did not have any data that could link the education provided with hospital re-admissions, our ability to determine the real effect of the educational programme on this outcome was limited.