Nursing staff facilitate patient participation by championing the patient's perspective: An action research study in spinal cord injury rehabilitation

Abstract Introduction Persons with spinal cord injury have experienced a life‐changing event, and they need to engage in the rehabilitation process to adjust to their current situation and future living conditions. Due to the highly contextual and varying psychological and physical ability to participate from patient to patient during rehabilitation, this is difficult for the injured person and for health professionals to support. Therefore, the aim of the study was to develop and facilitate patient participation by engaging nursing staff and from this engagement in the process, disclose methods to support participation. Methods The processes conducted were based on an action research approach, from problem identification to the development, test and evaluation of four new nursing initiatives. The initiatives were developed by eight nursing staff members who participated actively as co‐researchers in a 2‐year study conducted at a Spinal Cord Injury Centre in Denmark from 2016 to 2018. Data evolved from workshops, transcriptions of meetings and written evaluations and was further analysed using Ricoeur's phenomenological‐hermeneutic approach. Results Action research processes facilitated the development of four communicative initiatives and a shift in the nursing staff's support of the patient. In a collaborative process, the nursing staff acted as participants in the patient's rehabilitation. Awareness of the patient's perspective facilitated a caring, attentive and engaged approach from the nursing staff, which promoted rehabilitation tailored to the individual. Conclusion Patient participation was enhanced when nursing staff actively participated in the development of initiatives and a culture supporting a person‐to‐person approach involving the patient and themselves as equal participants in the collaborative rehabilitation process. Patient or Public Contribution Eight nursing staff members from the rehabilitation centre participated throughout the study as co‐researchers. Patients participated in observations and as informants in interviews during the first phase to identify challenges to patient participation. Patients also participated in testing the nursing initiatives during the action phase (Phase 3). Furthermore, a former patient was a member of the advisory board.

observations and as informants in interviews during the first phase to identify challenges to patient participation. Patients also participated in testing the nursing initiatives during the action phase (Phase 3). Furthermore, a former patient was a member of the advisory board.
action research, care, nurse-patient relationship, nursing, patient participation, rehabilitation

| INTRODUCTION
Patient participation is recognized worldwide as a prerequisite for the quality of care, treatment and rehabilitation. [1][2][3][4] Benefits like patient safety, lower costs and higher quality of healthcare have political attention and have motivated health services to enhance patient participation. [5][6][7][8] In spinal cord injury (SCI) rehabilitation, patient participation is highlighted as a key to successful rehabilitation. [9][10][11] This is due to the patient's struggle to cope with the far-reaching consequences of an SCI on physical, psychological, social and existential levels. [12][13][14][15] The, often sudden, disruption of an individual's life has wideranging consequences, and his or her work life, family life and social life may change forever, which may lead to a lower quality of life 16 and/or severe psychiatric conditions. [17][18][19] What previously counted as core elements of the lived life may need to be redefined to achieve a sense of continuity and meaning in life. 12,20 Therefore, the patient's sensemaking of the connections between past, present and future life is central to rehabilitation, where the focus is to '…enable persons with disabilities to attain and maintain their maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life'. 5 The importance of the patient's participation is also central in the International Classification of Functioning, Disability and Health's (ICF) biopsychosocial approach to rehabilitation. 8 This recognized approach includes the component 'participation' focusing on 'the lived experience in the actual context in which people live'. 21 Despite the growing body of literature on patient participation, research shows it is difficult to achieve individualised patient participation due to highly contextual and varying psychological and physical ability to participate from patient to patient during rehabilitation. 1,[22][23][24][25][26] Attempts have been made to strengthen patient participation by using goal setting 27 and shared decision making. 28 Even so, the patient's everyday life and emotional issues lack attention. 27 It has been suggested that the attitudes and approach of the interdisciplinary health professionals play a decisive role in the efforts of involving patients in healthcare and rehabilitation, which, in turn, affect implementation efforts. 10,23,29,30 This may be one of the reasons why health professionals struggle to implement the results from other studies into their own settings, 31-33 urging the need for a different methodological approach to support the patient's participation.
Several studies argue that involving health professionals is a promising way of dealing with the barrier of implementation and changing health care practice. 28,32,34 A possible methodological approach to overcome this challenge can be found in action research.
It differs from traditional research by combining the act of changing practice with research while involving participants actively in the study. [34][35][36][37] Therefore, the aim of the study was to develop and facilitate patient participation by engaging nursing staff and from this engagement in the process, disclose methods to support participation.

| MATERIALS AND METHODS
Based on its capacity to identify the issue and establish changes in practice, [38][39][40] an action research design was applied to structure the approach of this study. The methodology of action research was inspired by Dewey's pragmatic philosophy. 39,41,42 Hence, new insights, knowledge and skills were developed through a dynamic movement between experience, reflection and critical awareness of habits.
In four phases, nursing staff explored their existing and common traits. Accordingly, new awareness led to change through (1) identification of the local problem with patient participation, (2) development of four communicative nursing initiatives to support patient participation, (3) test and finally, (4) evaluation of the initiatives.
Iterative processes [43][44][45] were supported by reflective writing in log-books, reflective dialogues in workshops and meetings and action in practice (illustrated in Table 1).

| Setting and participants
The study was conducted at a Spinal Cord Injury Centre in Denmark, which is one of two national rehabilitation centres in Denmark where patients who have sustained SCIs are admitted for periods of 3-9 months. They are offered care, treatment and rehabilitation by an interdisciplinary team of health professionals, including physicians, physiotherapists and occupational therapists, psychologists, social workers and nursing assistants with 3 years of education and registered nurses.
An open invitation was accepted by eight nursing staff (four registered nurses and four nursing assistants) from a group of 55 nursing staff. Their experience in rehabilitation varied from 3 months to 19 years. They were all women and they all participated on equal terms. Being an explorative study with the methodological approach of action research, the co-researchers were informed of their active role.
The topic of patient participation was provided in advance, but the content, actions and knowledge evolved during the collaborative processes. The nursing staff members functioned as co-researchers in all four phases of the study. Their participation was organised so they could act as co-researchers as part of their normal working hours.
Patients were not enroled as co-researchers because the nursing staff members should be able to speak freely. Furthermore, the patients would have been discharged during the study because the study period was longer than the patients' hospitalization. Nevertheless, 11 patients were observed and interviewed by the first author in the first phase to identify challenges to patient participation as perceived by them. The interviews were analysed by the researchers using Ricoeur's text analysis. The findings from the interviews were part of the workshops with the co-researchers. Patients also participated in testing the initiatives during Phase 3, the action phase.
The study had an organizational anchoring with an advisory board representing the co-researchers, a former patient, the supervisors and the interprofessional managers as well as a representation from the head of the department. The aim of the board was the coordination of the project in accordance with the day-to-day administration of the centre. Furthermore, the board supported the co-researchers' work and the implementation of the findings of the project. While not being directly involved, the interdisciplinary team members were continually informed throughout the entire project.

| Data collection
Data were collected from 2016 to 2018 and consisted of coresearchers' log-book notes and the first author's observations from 19 days and 11 interviews with patients, four 1-day workshops and nineteen 1-h meetings held on a regular basis throughout the processes ( Table 1). All interviews, meetings and workshops were audio-recorded and transcribed verbatim. Finally, data were included from the co-researchers' evaluations of the four communicative nursing initiatives based qualitative on open-ended questionnaires.

| FINDINGS
Through the action research processes, the nursing staff realised how knowledge about the patients' perspectives increased their ability to support patient participation. They developed and tested four nursing initiatives and found them effective as a method to facilitate patient participation.
A common feature of all the four communicative nursing initiatives ( Figure 1) was that they provided structure and support to conversations between the patient and the nursing staff. They

Rikke, co-researcher, evaluation of the four initiatives
When the nursing staff became attentive to the patient's perspective, they realized its absence from the planning of the SCI rehabilitation pathway as well as in the activities conducted during the process.
Therefore, the nursing staff grasped the necessity of making time and space for the patients to share their previous routines and habits. In

| DISCUSSION
The present study revealed that new communicative initiatives helped nursing staff to facilitate patient participation in rehabilitation.
At the core of these initiatives was an openness to include the patient's perspective in the rehabilitation process. This implied that the nursing staff learned about the patient's life situation and understood how they could support the patients in their hopes and wishes regarding their rehabilitation and their future.
According to Wade 55 rehabilitation is a person-centred process tailored to the individual patient's needs just as personalised monitoring of changes is associated with interventions tailored to the needs, goals and wishes of the individual patient. The importance of a person-centred approach to succeed in patient participation is widely recognized by health care professionals in general 9,27,55,56 and nurses in particular. [2][3][4]57 However, in a systematic review, Yun and Choi 58 find that person-centred care has not yet been implemented and fully adopted in rehabilitation settings. Furthermore, person-centred care, as it has been reported so far, primarily focuses on goalsetting and shared decision-making. This can be problematic because patients with SCI can have a reduced ability to participate in shared decision-making in the early phase of rehabilitation, which implies a need to balance autonomy and support. 10 Combined with the need to secure respect and dignity 11 the balance is difficult and challenges the person-centred approach. Goal setting is still widely used 27,55 and considered to be good for making person-centred rehabilitation. 59 Our findings are not in opposition to goal setting. In fact, the The collaborative process, also emphasized by Negrini et al.,56 was facilitated by communicative initiatives in the present study. The initiatives were developed by the nursing staff and therefore adjust to SCI rehabilitation in a specific context. This showed promising results because the nurses were not told what would be effective.
They experienced it.
Hence, the methodology of this study involved the nursing staff and they developed a caring, attentive engagement. This helped them back to the cores of nursing and sparked their engagement. This attention to creating space for nursing staff to develop their nursing and perform nursing and care may result in a healthful culture, which is described as an important factor in successful person-centred healthcare. 62 Further, it may help nursing staff to find their position and contribution to the interprofessional team in rehabilitation, which is documented to be difficult. [63][64][65][66][67][68] Accordingly, McCormack et al. 69 show how this essential, yet overlooked and deprioritized aspect of person-centred care may improve the implementation of the approach. Interestingly, our findings show that even within the existing, fixed time logic and overall organization of the centre, the nursing staff were able to change their approach, learn about the patient's perspective and increase patient participation. This highlights the way in which we organized our study: We developed an environment for dialogue and reflection and cared for the well-being of the nursing staff. We provided space for their perspectives to evolve.
In that sense, we took it a bit further than just acknowledging the

| Strengths and limitations
The social complexity of action research limits the opportunity to create solutions and results that can be transferred directly to other contexts. 39,70 Therefore, transparency is crucial for others to be able to evaluate how to apply the results of this type of research. 71 With large materials and many processes, this is difficult.
Supplementing the findings of the action research processes with the application of Ricoeur's 52 text model provided an opportunity to achieve further insight in addition to local development of knowledge and solutions hoping to increase the travelling capacity concerning how the local knowledge can attain value and rigour to be recognizable and usable in other settings and communities. 72 Working with the local staff's attitudes and approaches to facilitate patient participation led to their renewed understanding and knowledge. However, we only had the opportunity to involve 8 out of 50 nursing staff members at the centre in the processes, which limited the personal involvement to a section of the entire group. The participating nursing staff actively applied for participation and they chose to participate out of interest with the risk of not being representative of the larger group.
Even though rehabilitation is an interdisciplinary task, 55 we chose only to include nursing staff in this study. Therefore, the findings only reflect the nursing contribution to rehabilitation.
In rehabilitation, the use of ICF as a reference system is central. 73 The ICF was not an explicit frame, but by listening to the patient thoughts and needs, different biopsychosocial elements were automatically touched. Nevertheless, this could be more interesting to explore further. Furthermore, the time frame of the present study prevents the presentation of long-term possibilities and consequences of the nursing initiatives and the approach adopted by the participating nurses, and we recommend further research on these aspects.

| CONCLUSION
When nursing staff spend time engaging in the patient perspective,