Perceptions of recovery and rehabilitation in people with brain injury in Spain. A qualitative study

Abstract Introduction Acquired brain injury (ABI) is a condition that severely impairs the personal, family, social and professional lives of the individuals who experience it. The aim of this study was to gain insight into ABI patients' perceptions of their condition and rehabilitation process so that physiotherapists can approach their treatment in a more comprehensive, satisfactory manner. Methods A qualitative study was carried out with individual interviews, and focus group sessions (semi‐structured interviews) were held with 33 individuals from various associations. Results Four themes emerged in this study: physiotherapy treatment, changes in lifestyle, patients' feelings about their condition and aspirations for the future. The participants reported that their condition had led to multiple changes in their personal and family lives that were not always positive. Conclusions These findings may be useful for identifying ways to increase acceptance of their condition and design a comprehensive rehabilitation programme for these patients and their families. The psychosocial needs of ABI patients could be optimized by providing good physical care through effective communication within the rehabilitation environment where communication between professionals and patients prevails, to meet their real needs and expectations. Patient or Public Contribution This study was conducted based on interviews with adult ABI patients regarding their experiences concerning their rehabilitation process and daily life.

The second most frequent cause is traumatic brain injury (TBI). It is estimated that there are between 50,000 and 75,000 individuals living in these circumstances in Spain and another 2500 in vegetative or minimally conscious states. 4 The most severe cases are found in very young, male patients (under 30 years of age) with a mean life expectancy of around 35 years. Almost all of them are of working age or about to finish higher education.
The large number of cases and the ongoing progress in medicine and technology have led to increased survival rates among individuals with severe brain injury. Increased survival rates have led to an increase in the number of sequelae affecting not only individuals with ABI but also their families and their social and work environments, considerably impacting their quality of life. 3 Most survivors experience sequelae affecting sensorimotor, cognitive, emotional and/or behavioural aspects with a direct impact on their performance of activities of daily living (ADLs). 5,6 Their participation in ADLs is often disrupted to the point of abandoning these activities or becoming completely dependent on others to perform them. For this reason, one of the primary goals of rehabilitation is to achieve as much independence and functionality as possible. 7 Another key objective is to maximize patients' social engagement to improve their well-being and minimize the burden and distress for their families. 8 Rehabilitation professionals should be aware of the different aspects related to the evolution of those with ABI and their recovery process when developing proposals for joint action between different professionals involved, adapting to the individual, family, work and social needs of patients.
Despite the growing number of trials and systematic reviews assessing the effectiveness of rehabilitation, [9][10][11][12]  The aim of this study was to gain insight into ABI patients' perceptions of their condition and rehabilitation process so that physiotherapists can approach their treatment in a more comprehensive, satisfactory manner. In addition, awareness of the neurological rehabilitation treatments that patients have received, the changes that have taken place in their lives, their feelings about the disease and their aspirations for the future is necessary to implement comprehensive treatments that help them to achieve the maximum possible functional status and quality of life.

| Design
This qualitative study (hermeneutical phenomenological method) adopted an interpretative approach to data collection and analysis. 15 Data were collected in a rigorous manner using a combination of individual interviews and focus group sessions. This method seeks to further understand people's perceptions (motivations, meanings and their world), their interactions and the culture of social groups through a comprehensive process.
When participants were unable to attend their focus group session, they were offered the possibility of an individual interview. 16 In-depth interviews were conducted to gain a better understanding of participants and increase their confidence, improving the quality of their contributions and opinions. Where possible, focus group sessions were held to obtain a wider range of perspectives through dynamic group interactions. The consolidated criteria for reporting qualitative research (COREQ) checklist were used to design and report this study. 17

| Sample/participants
Participants were ABI patients, that is, patients with TBI, haemorrhagic stroke, arteriovenous malformation or brain tumours, and were members of ABI patient associations.
The inclusion criteria were as follows: chronic patients with a long clinical course (greater than or equal to 4 years) who have experienced some type of ABI; who have required physiotherapy treatment for their functional recovery; who have actively participated in their recovery process; who can speak and understand Spanish; and who signed the informed consent form.
The exclusion criteria were as follows: long-term patients who have experienced some form of ABI, but whose state of consciousness, cognition and/or speech precludes verbal communication.
A snowball sampling technique was used to recruit participants.  Participants were informed about the study objectives and characteristics by the researcher and had to sign an informed consent form to be able to participate. With the permission of the participants, an audio-recording system was used so that both the interviewer and an external person could take notes on the group discussion, participants' body language and group dynamics. 18

| Data analysis
The audio recordings of the interviews and focus groups were transcribed verbatim and personal data were anonymized.
All recordings and transcripts were double-checked for accuracy.
Audio recordings were analysed using the framework method, also known as qualitative content analysis, which produced descriptive or explanatory conclusions grouped around a variety of themes. Before establishing a thematic structure, the reviewers familiarized themselves with the interviews by listening to the recordings and examining the notes taken during the sessions. The interviews were listened to randomly, and a coding system and set of codes were created for application to the study. The process of creating, reviewing and defining the themes was carried out by the lead author (S. P. C.). The final themes and subthemes were discussed and agreed upon by the lead author and various external parties via videoconference.
All participant interviews were coded using ATLAS.ti 7.1 software. The codes were grouped into themes. The code groupings were then defined, and the data were analysed. The lead author met twice with the statistician to discuss the characteristics and differences between the different data.

| RESULTS
Four themes emerged from the data analysis, which are shown in Table 1 and Figure 1, alongside the questions, the structure of subthemes and units of meaning (or codes).

| Theme 1: Physiotherapy treatment
This type of neurological patient requires physiotherapy treatment to recover and/or maintain as much functional status as possible after experiencing neurological damage. The neurological physiotherapy treatments provided differed between patients, due in part to the health services available in each location and the patients' family circumstances.
Two subthemes emerged: treatment options and family involvement.

| Treatment options
The treatment options reported suggest that the neurological treatments received by each patient differed from one another. Some of the patients had only sought treatment from public health services. Several patients had also sought treatment from private services in different cities in Spain, many of them on a temporary basis, and had subsequently discontinued treatment. It is important to note that the patients themselves displayed differences when living in urban areas (they had better access to specialized health services) compared to those living in rural areas.
I was in X for 4 months, then I was in Y and Z doing rehabilitation, and I was getting somewhat better.
I returned from Z to X, but I can't remember how long I was there. I was also working with several private   It's also a small village, so we all know each other.
They're familiar with my situation, so it's not embarrassing for me. (P-7, P-11)

| Financial changes
Financial changes include any financial changes occurring during the course of the condition. The following were identified: losing jobs, losing career opportunities and losing money.

| Theme 3: Feelings about their condition
Patients experience a range of feelings and emotions relating to their ABI and the way they feel within society. These feelings are often negative and relate to how they feel about themselves and how others make them feel. Two subthemes emerged: intrinsic feelings and extrinsic feelings.

| DISCUSSION
The aim of this study was to gain insight into ABI patients' perceptions of their condition and rehabilitation process so that physiotherapists (and other related rehabilitation professionals) can approach their treatment in a more comprehensive, satisfactory manner.
Physiotherapy is of utmost importance for patients with ABI. 19 Some of the studies consulted resports that ABI patients receive physiotherapy treatment at their referral hospitals. Despite this, many patients prefer to seek additional, specific physiotherapy treatment (and other therapies that are complementary to their rehabilitation process) at private facilities, due to the long waiting lists at public facilities. 20 There is a window of enhanced neuroplasticity early after stroke, during which the brain's dynamic response to injury is heightened and rehabilitation might be particularly effective. 21 Exercise training should be incorporated into the development of neurorehabilitative treatments for long-term brain injury survivors, and improvements are necessary in all areas of impairment and activity limitations. 21,22 The Swedish Agency for Health Technology Assessment and Assessment of Social Services has assessed quantitative and qualitative studies on rehabilitation for individuals with TBI through systematic reviews. 23 As few high-quality studies were identified, it was not possible to assess the effects of early rehabilitation, rehabilitation for chronic patients, rehabilitation in supported living or specialized rehabilitation for individuals with moderate to severe TBI.
What was clear from these studies is that individuals with TBI experienced limited access to rehabilitation services and perceived the interventions that they received as insufficiently coordinated.
Regarding the family sphere, participants were unanimous in highlighting the significance of the family nucleus in their recovery and subsequent return to their ADLs as the only people offering support and understanding of their condition. Other studies report that families require further training to be able to assist in the treatment of their relatives [24][25][26] and seek treatment options, for which they fully rely on physiotherapists. 27 Families are key in helping to move the recovery process forward. Sometimes, physiotherapists work as if they were the only people able to help patients, downplaying the importance of the family's involvement in their recovery despite requests from these families to become more involved. The family can improve outcomes over time due to increased and more efficient home practice between sessions.
Another relevant consideration is the perceived changes that ABI has brought about in patients' lives. Several authors corroborate the physical changes identified in our study and characterize them as sequelae resulting from ABI. [28][29][30][31][32][33][34] Although it is taken for granted that ABI patients may experience significant financial and personal changes, it is sometimes difficult for professionals to understand this process and for patients to accept it. 32 These changes affect not only the physical and psychological spheres but also the family and financial spheres, and can lead to many material and personal losses resulting in a reduced desire for improvement and recovery. Patients' feelings also change in the face of the illness. Lee 30

| CONCLUSION
In conclusion, the course of ABI and the process of recovery lead to multiple changes in the lives of patients and their families. In addition, the feelings caused by the condition and/or the society surrounding these patients are not always positive. ABI patients have a series of aspirations that are thwarted by the sequelae of the condition itself and, although a wide range of treatments are available to these patients, it is never enough for them as they seek to return to 'the way they were before'.
It is also crucial to be able to work with families to help with the treatment and search for solutions, and they are key to the recovery process.