Nursing Staff Facilitate Patient Participation in Spinal Cord Injury Rehabilitation PDF

Received: 28 January 2022 | Revised: 28 June 2022 | Accepted: 20 July 2022 DOI: 10.1111/hex.13574 ORIGINAL ARTICLE Nursing staff facilitate patient participation by championing the patient's perspective: An action research study in spinal cord injury rehabilitation Randi Steensgaard Ph...

Received: 28 January 2022 | Revised: 28 June 2022 | Accepted: 20 July 2022 DOI: 10.1111/hex.13574 ORIGINAL ARTICLE Nursing staff facilitate patient participation by championing the patient's perspective: An action research study in spinal cord injury rehabilitation Randi Steensgaard PhD, Head of Nursing Research1,2 | 2,3 Raymond Kolbaek PhD, Associate Professor | Sanne Angel PhD, Associate Professor4 1 Department of Neurology, Spinal Cord Injury Centre of Western Denmark, Central Region Abstract Hospital, Viborg, Denmark Introduction: Persons with spinal cord injury have experienced a life‐changing event, 2 Centre for Research in Clinical Nursing, Central Region Hospital, Viborg, Denmark and they need to engage in the rehabilitation process to adjust to their current 3 Department of Nursing, Campus Viborg—VIA situation and future living conditions. Due to the highly contextual and varying University College, Viborg, Denmark psychological and physical ability to participate from patient to patient during 4 Research Unit for Nursing and Healthcare, rehabilitation, this is difficult for the injured person and for health professionals to Institute of Public Health, Aarhus University, Aarhus, Denmark 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, Correspondence disclose methods to support participation. Randi Steensgaard, PhD, Head of Nursing Research, Department of Neurology, Spinal Methods: The processes conducted were based on an action research approach, Cord Injury Centre of Western Denmark, from problem identification to the development, test and evaluation of four new Central Region Hospital, Soendersoeparken 11, 8800 Viborg, Denmark. nursing initiatives. The initiatives were developed by eight nursing staff members Email: [email protected] who participated actively as co‐researchers in a 2‐year study conducted at a Spinal Funding information Cord Injury Centre in Denmark from 2016 to 2018. Data evolved from workshops, Novo Nordisk Fonden, Grant/Award Number: transcriptions of meetings and written evaluations and was further analysed using NNF15OC0017510 Ricoeur's phenomenological‐hermeneutic approach. Results: Action research processes facilitated the development of four communica- tive 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 This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. © 2022 The Authors. Health Expectations published by John Wiley & Sons Ltd. Health Expectations. 2022;25:2525–2533. wileyonlinelibrary.com/journal/hex | 2525 2526 | STEENSGAARD ET AL. 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. KEYWORDS action research, care, nurse–patient relationship, nursing, patient participation, rehabilitation 1 | INTRODUCTION Several studies argue that involving health professionals is a promising way of dealing with the barrier of implementation and Patient participation is recognized worldwide as a prerequisite for the changing health care practice.28,32,34 A possible methodological 1–4 quality of care, treatment and rehabilitation. Benefits like patient approach to overcome this challenge can be found in action research. safety, lower costs and higher quality of healthcare have political It differs from traditional research by combining the act of changing attention and have motivated health services to enhance patient practice with research while involving participants actively in 5–8 participation. the study.34–37 In spinal cord injury (SCI) rehabilitation, patient participation is Therefore, the aim of the study was to develop and facilitate patient highlighted as a key to successful rehabilitation.9–11 This is due to the participation by engaging nursing staff and from this engagement in the patient's struggle to cope with the far‐reaching consequences of an process, disclose methods to support participation. SCI on physical, psychological, social and existential levels.12–15 The, often sudden, disruption of an individual's life has wide‐ ranging consequences, and his or her work life, family life and social 2 | M A T E R I A L S AN D M E T H O D S life may change forever, which may lead to a lower quality of life16 and/or severe psychiatric conditions.17–19 What previously counted Based on its capacity to identify the issue and establish changes in as core elements of the lived life may need to be redefined to achieve practice,38–40 an action research design was applied to structure the 12,20 a sense of continuity and meaning in life. approach of this study. The methodology of action research was Therefore, the patient's sensemaking of the connections inspired by Dewey's pragmatic philosophy.39,41,42 Hence, new between past, present and future life is central to rehabilitation, insights, knowledge and skills were developed through a dynamic where the focus is to ‘…enable persons with disabilities to attain and movement between experience, reflection and critical awareness maintain their maximum independence, full physical, mental, social of habits. and vocational ability, and full inclusion and participation in all In four phases, nursing staff explored their existing and 5 aspects of life’. The importance of the patient's participation is also common traits. Accordingly, new awareness led to change central in the International Classification of Functioning, Disability through (1) identification of the local problem with patient and Health's (ICF) biopsychosocial approach to rehabilitation.8 This participation, (2) development of four communicative nursing recognized approach includes the component ‘participation’ focusing initiatives to support patient participation, (3) test and finally, (4) on ‘the lived experience in the actual context in which people live’.21 evaluation of the initiatives. Despite the growing body of literature on patient participation, Iterative processes43–45 were supported by reflective writing in research shows it is difficult to achieve individualised patient participation log‐books, reflective dialogues in workshops and meetings and action due to highly contextual and varying psychological and physical ability to in practice (illustrated in Table 1). participate from patient to patient during rehabilitation.1,22–26 Attempts have been made to strengthen patient participation by using goal setting27 and shared decision making.28 Even so, the 2.1 | Setting and participants patient's everyday life and emotional issues lack attention.27 It has been suggested that the attitudes and approach of the The study was conducted at a Spinal Cord Injury Centre in Denmark, interdisciplinary health professionals play a decisive role in the which is one of two national rehabilitation centres in Denmark efforts of involving patients in healthcare and rehabilitation, where patients who have sustained SCIs are admitted for periods of which, in turn, affect implementation efforts. 10,23,29,30 This may 3–9 months. They are offered care, treatment and rehabilitation by be one of the reasons why health professionals struggle to an interdisciplinary team of health professionals, including physicians, implement the results from other studies into their own physiotherapists and occupational therapists, psychologists, social settings,31–33 urging the need for a different methodological workers and nursing assistants with 3 years of education and approach to support the patient's participation. registered nurses. STEENSGAARD ET AL. | 2527 TABLE 1 Four phases, aims, participants and methods Phase Aim Participants Methods 1: Constructing To identify the shared meanings and Patients A. Case studies (interviews with patients, challenges related to the issues of co‐researcher log‐books, observations by Co‐researchers patient participation the principal investigator) Supervisors B. Workshop Principal investigator C. Consecutive meetings 2: Planning To collaborate on planning actions to Co‐researchers B. Workshop address the identified issues. C. Consecutive meetings Supervisors Principal investigator 3: Acting To intervene and act upon identified Patients B. Workshop issues while learning from the C. Consecutive meetings Co‐researchers consequences. D. Testing of four initiatives Supervisors Principal investigator 4: Evaluating To evaluate the actions and discuss how Co‐researchers B. Workshop they solved the issues of patient C. Consecutive meetings Supervisors participation. E. Prototype evaluations Principal investigator An open invitation was accepted by eight nursing staff (four 2.2 | Data collection registered nurses and four nursing assistants) from a group of 55 nursing staff. Their experience in rehabilitation varied from 3 months Data were collected from 2016 to 2018 and consisted of co‐ to 19 years. They were all women and they all participated on equal researchers' log‐book notes and the first author's observations from terms. Being an explorative study with the methodological approach of 19 days and 11 interviews with patients, four 1‐day workshops and action research, the co‐researchers were informed of their active role. nineteen 1‐h meetings held on a regular basis throughout the The topic of patient participation was provided in advance, but the processes (Table 1). All interviews, meetings and workshops were content, actions and knowledge evolved during the collaborative audio‐recorded and transcribed verbatim. Finally, data were included processes. The nursing staff members functioned as co‐researchers in from the co‐researchers' evaluations of the four communicative all four phases of the study. Their participation was organised so they nursing initiatives based qualitative on open‐ended questionnaires. 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 2.3 | Data analysis would have been discharged during the study because the study period was longer than the patients' hospitalization. Nevertheless, 11 Artistic, creative activities within the workshops sparked externaliza- patients were observed and interviewed by the first author in the first tion of and reflection on tacit basic assumptions and habits. This phase to identify challenges to patient participation as perceived by facilitated access to experiences on both personal and group them. The interviews were analysed by the researchers using Ricoeur's levels46–51 and led to the deployment of four communicative nursing text analysis. The findings from the interviews were part of the initiatives. workshops with the co‐researchers. Patients also participated in To achieve a surplus of meaning and to obtain a deeper testing the initiatives during Phase 3, the action phase. understanding of what was immediately perceived in the action The study had an organizational anchoring with an advisory research processes, all transcriptions were analysed within the board representing the co‐researchers, a former patient, the hermeneutic‐phenomenological tradition guided by Ricoeur's supervisors and the interprofessional managers as well as a approach to text analysis.52,53 The empirical material consisted of representation from the head of the department. The aim of the different sources as described in the section on data collection. To board was the coordination of the project in accordance with the systematically and transparently bring out central findings from this day‐to‐day administration of the centre. Furthermore, the board diverse material, the same analytical approach was used regardless of supported the co‐researchers' work and the implementation of the the source. According to Ricoeur,52 all social phenomena of a findings of the project. While not being directly involved, the semiotic nature can be analysed by using the text model. Therefore, interdisciplinary team members were continually informed through- the recorded interviews and dialogues from the workshops and out the entire project. meetings were transcribed into text and gathered with the rest of the 2528 | STEENSGAARD ET AL. data into one document. The analysis had three interrelated steps 3 | FIN D IN GS and the process moved back and forth to refine and strengthen the analysis. During the first step, the naïve reading, we read to obtain an Through the action research processes, the nursing staff realised how immediate sense and impression of the text, leading to an overall knowledge about the patients' perspectives increased their ability to interpretation of what the text said about patient participation. The support patient participation. They developed and tested four nursing next step, the structural analytical reading, was conducted as a line‐ initiatives and found them effective as a method to facilitate patient by‐line reading, where we moved our focus from what the text said participation. to the meaning of the text in a broader sense and identified central A common feature of all the four communicative nursing themes. Finally, during the third step, critical analysis, we conducted initiatives (Figure 1) was that they provided structure and support an interpretation of what was the most probable understanding of to conversations between the patient and the nursing staff. They what the text said about how the nursing staff supported patient highlighted the perspective of the patient and promoted the patient's participation.52 The analysis was performed by the first author under agenda over that of the nursing staff. Therefore, all the guides start the support and supervision of the coauthors. It was also discussed with ‘My…’. The initiatives work independently but are linked and with the co‐researchers. The quotations illustrate the findings of the comprise the full rehabilitation process with variations in content and analysis. The names are pseudonyms to keep anonymity as suggested focus. All initiatives are described in guidelines, which include by Eldh et al.54 instructions for the nursing staff. From the analysis of all materials, there are signs of a changed approach and attitude to patient participation in SCI rehabilitation. 2.4 | Ethical considerations The nursing staff included the patient's perspective and experienced how this improved the planning of and patient engagement in the The study was approved by the Danish Data Protection Agency rehabilitation process. By being caring and attentive with an engaged (Journal no. 1‐16‐02‐503‐15). approach, the nursing staff found themselves as participants in the The Danish Ethical Committee does not require approval for patient's rehabilitation. The insights on how to support the patient's qualitative studies. Nevertheless, the Helsinki II Declaration and Ethical participation are elaborated on below in three interrelated themes: Guidelines for Nursing Research in the Nordic Countries were observed. The study was approved by the rehabilitation centre and the Department of Neurology. 3.1 | Awareness of the patient's perspective Participation in the study was voluntary for all participants and facilitates a caring, attentive and engaged approach the patients and co‐researchers gave oral and written consent after receiving information and having the opportunity to ask questions When the nursing staff learned about their patients' perspectives, about the study and its implications. An agreement was made with a they felt compelled to form a closer relationship as a basis for psychologist whom the participants were able to consult if they felt providing care. Getting to know their patients as people, the nursing psychological discomfort or harm during their participation. staff became sensitive to their patients' situations and felt engaged FIGURE 1 The aim and setting of the four communicative nursing initiatives developed by the co‐researchers. STEENSGAARD ET AL. | 2529 on a more personal level. This consolidated a person‐centred care what was worth looking forward to, their progress and approach as the basis for rehabilitation nursing. Recognizing the core not least the hopes they had. value and original vocation as a caregiver, a co‐researcher expressed: Rikke, co‐researcher, evaluation of the four initiatives We need to get back to our core job as nurses and When the nursing staff became attentive to the patient's perspec- certified healthcare workers. That is forming relationships tive, they realized its absence from the planning of the SCI rehabilitation and caring for our patients; once we have got that right, pathway as well as in the activities conducted during the process. we can assist with bowel management (…). Therefore, the nursing staff grasped the necessity of making time and Lise, co‐researcher, Meeting 17 space for the patients to share their previous routines and habits. In addition, the nursing staff experienced the importance of encouraging A person‐centred care provision became the new overarching patients to share personal perspectives related to their situation and foundation for rehabilitation nursing. Listening attentively to the possible consequences for their lives in relation to family, work and social patient's perspective created space for thoughts, concerns and a new activities. When the patients shared their perspectives on their current form of collaboration. The nursing staff experienced how this situation in relation to their wishes for the future, their requirements for improved the patients' wellbeing: care and rehabilitation became clearer. As a co‐researcher puts it: She said that it felt good getting the chance to tell her We have had a deeper understanding since our story; it was such a relief that somebody had the time to conversation, as the background and his personality listen to her. This was also why she embarked on a started to become clear. I can use that going forward psychological journey, because she had to think about when we are organising activities and more specifically and verbalise how she was feeling (…) this was the first how I guide, encourage and motivate the individual time that she felt anyone had time for her and showed patient to get as far as possible in the rehabilitation that they cared. process and to translate that into the bigger perspective, Ann, co‐researcher, Meeting 6 learning to live with a spinal cord injury. Hanne, co‐researcher, evaluation of nursing initiative The patient's description of relief was linked to the opportunity to share her experiences. This helped her make sense of her situation. This quote illustrates how the nursing staff acknowledged the pivotal Furthermore, the nursing staff's genuine interest in their pa- position of the patient's prior life, views, values and wishes. Thus, it tients' lives and wellbeing was experienced as caring. This made became clear that getting access to patients' narratives and views of their the nursing staff feel valued and raised their spirits. situation was crucial to plan, adjust, clarify and negotiate a more individual and personalized rehabilitation process. Accordingly, the patient's perspective became a necessary component in planning rehabilitation. 3.2 | Attentiveness to the patient's perspective and pre‐SCI life guide the rehabilitation pathway 3.3 | Developing a collaborative process: In addition to facilitating care, the nursing staff's engagement seemed The nursing staff as participants in the patient's to support the patients' reflection on their situation. The patients had rehabilitation the opportunity to explain who they were, how they were feeling and what they felt about their current and future situations. This fixed When the nursing staff were noticing the importance of providing point in the current process was important for the patients, as it more personal care, the issue of ‘who participates in what’ arose. represented the point from which their rehabilitation became Accordingly, the nursing staff expanded their view on patient meaningful to them. The nursing staff, as listeners and companions, participation in rehabilitation, from solely focusing on how the helped to identify valuable elements from the patients' pre‐SCI lives. patient should participate to also include his/her own participation in They helped their patients to understand what had happened and the patient's process. One of the co‐researchers described this as how to connect to their pre‐SCI lives and their lives to come. A co‐ taking part in the patient's journey: researcher describes how the conversations broadened the patient's perspective and how the patient gained a deeper self‐understanding, ‘Our collaboration is characterised by the knowledge that which aided the rehabilitation process: we have together but also the difficult journey that we have been through. During conversations with patients, I often experienced Annett, co‐researcher, evaluation of nursing initiative how at first the patient focused on what had happened or what was difficult, but I also observed how patients This co‐researcher felt as if she was walking alongside the ‘got through to the other side’ and were able to verbalise patient, not leading but accompanying the patient in a supportive and 2530 | STEENSGAARD ET AL. caring manner. The feeling of a shared task promoted engagement centred care, as it has been reported so far, primarily focuses on goal‐ and a relationship built around enhancing the patient's ability to move setting and shared decision‐making. This can be problematic because forward. patients with SCI can have a reduced ability to participate in shared Getting to know the patient's perspective, the nursing staff decision‐making in the early phase of rehabilitation, which implies a became aware that they needed to participate differently in the need to balance autonomy and support.10 Combined with the need to patient's rehabilitation process. Their participation was welcomed by secure respect and dignity11 the balance is difficult and challenges the patients who in return opened up even more and shared their the person‐centred approach. Goal setting is still widely used27,55 and thoughts and feelings about their situation. This led to more profound considered to be good for making person‐centred rehabilitation.59 engagement and the care provided by the nursing staff became much Our findings are not in opposition to goal setting. In fact, the more attentive. consecutive communicative initiatives can spark the patients' reflec- Another co‐researcher explained how the new approach brought tions about their situation and ultimately, they can be transformed out the patient's personality, giving him the opportunity to voice his into individualised goals. Further, the nursing initiatives may become needs and the motivation to move on. The co‐researcher described one of the nursing staff's methods to assist the patient in articulating this as an opportunity to decipher the code for individualized their own wishes and needs when setting goals together with the rehabilitation or—to use a common metaphor—to help find the pieces interdisciplinary team. of the puzzle for a coherent life: The present study shows that being present and listening to the patient's wishes and needs provided the nursing staff with specific This is where the code for the patient's drive, his and individual knowledge about the patient as a person. Ultimately, motivation, energy, problems, doubts and frustrations the nursing staff got a clearer understanding of how the patients may come to the surface. Here the pieces of the puzzle could participate in processes linked to his or her life. This confirms are inspected to see what will fit, and maybe a few of the the importance of the patient's perspective, which was also found in pieces are positioned, but that is not the aim. The aim one of few studies in SCI rehabilitation addressing the patients; per- must be to find the pieces and start the puzzle. spective on patient participation and linked patient participation Hanne, co‐researcher, evaluation of initiatives closely to person‐centred care.11 In this study, we present results of a changed understanding of the importance of the patient's perspec- The metaphor of a puzzle illustrates how the nursing staff tive and we show signs of a changed approach where nursing staff perceived the new ‘picture’ that led to a new approach. A puzzle is participate in the patient's process. According to Martinsen,60 nursing complete when all the pieces are in place. However, in the case of staff must have an understanding and insight of the patient as a rehabilitation, it is not up to the nursing staff to do the puzzle. It is not person, rather than merely as a patient to ‘participate in the world of even to provide the pieces. Instead, it is to bring the patient's own the other’. According to Martinsen,61 this can occur when nurses are pieces into play and do the puzzle together with the patient. The ‘sensing’ and ‘being’ with the person rather than focusing on nursing staff's participation in completing the puzzle helped the producing and solving tasks. This new position in the relationship patients to discover their own pieces. focused on the nursing staff's attention to the patient's perspective and facilitated a positive cycle that enhanced caring and provided a mutual engagement. This change of approach shows similarities to 4 | DISC US SION the concept of person‐centred practice, which according to Yun and Choi58 is an essential component for the quality of care in The present study revealed that new communicative initiatives rehabilitation. Core values of person‐centred practice are described helped nursing staff to facilitate patient participation in rehabilitation. in the theory of McCormack et al.62 as respect for personhood, At the core of these initiatives was an openness to include the sharing autonomy, being authentic, being therapeutically caring, patient's perspective in the rehabilitation process. This implied that promoting healthfulness, showing respect for and actively engaging the nursing staff learned about the patient's life situation and with the person's preferences, abilities, goals and lifestyle. understood how they could support the patients in their hopes and The collaborative process, also emphasized by Negrini et al.,56 wishes regarding their rehabilitation and their future. was facilitated by communicative initiatives in the present study. The According to Wade55 rehabilitation is a person‐centred process initiatives were developed by the nursing staff and therefore adjust tailored to the individual patient's needs just as personalised to SCI rehabilitation in a specific context. This showed promising monitoring of changes is associated with interventions tailored to results because the nurses were not told what would be effective. the needs, goals and wishes of the individual patient. The importance They experienced it. of a person‐centred approach to succeed in patient participation is Hence, the methodology of this study involved the nursing staff 9,27,55,56 widely recognized by health care professionals in general and and they developed a caring, attentive engagement. This helped them nurses in particular.2–4,57 However, in a systematic review, Yun and back to the cores of nursing and sparked their engagement. This attention Choi58 find that person‐centred care has not yet been implemented to creating space for nursing staff to develop their nursing and perform and fully adopted in rehabilitation settings. Furthermore, person‐ nursing and care may result in a healthful culture, which is described as an STEENSGAARD ET AL. | 2531 important factor in successful person‐centred healthcare.62 Further, it Furthermore, the time frame of the present study prevents the may help nursing staff to find their position and contribution to the presentation of long‐term possibilities and consequences of the interprofessional team in rehabilitation, which is documented to be nursing initiatives and the approach adopted by the participating difficult.63–68 Accordingly, McCormack et al.69 show how this essential, nurses, and we recommend further research on these aspects. 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 5 | CONCLUSION organization of the centre, the nursing staff were able to change their approach, learn about the patient's perspective and increase patient When nursing staff spend time engaging in the patient perspective, participation. This highlights the way in which we organized our study: they are able to participate in a collaborative process tailoring We developed an environment for dialogue and reflection and cared for rehabilitation to the individual patient's perspective, using his the well‐being of the nursing staff. We provided space for their narrative, values and needs as the new focal point for personalised perspectives to evolve. care. Accordingly, their commitment to understanding the patient's In that sense, we took it a bit further than just acknowledging the situation unfolds on a person‐to‐person level, which helps the need to listen. The nursing staff took the role of participants in an nursing staff to engage with the patient and support him in his efforts aspect of the patient's life and personal wishes and needs. to build a coherent life post‐SCI. This study shows how the The findings of our study show a detailed picture of the power of caregivers' approach changes as a consequence of their first‐hand lived experience and how this proved to increase the personal experiences. Including nursing staff directly in developing a person‐ engagement of the nursing staff in their patients' pathways in a caring centred practice with the purpose of enhancing patient participation way. Therefore, involving nursing staff in developing and testing new may lead to a changed approach where the attentiveness and procedures may be powerful and ultimately change their approach, awareness of the patient's perspective becomes a natural part of attitude and way of working in a more person‐centred direction. rehabilitation planning. ACKNOWL EDGEM ENTS 4.1 | Strengths and limitations For the profound participation in this study, the authors sincerely thank Lotte Schenk, Randi Bjerring Michelsen, Stine Bonne, The social complexity of action research limits the opportunity to Maj Damgaard, Maria Bjerring, Helle Bach, Anne Krabbe and create solutions and results that can be transferred directly to other Kathrine Madsen. The authors also thank the patients who contexts.39,70 Therefore, transparency is crucial for others to be able participated, the advisory board and the Spinal Cord Injury Centre 71 to evaluate how to apply the results of this type of research. of Western Denmark, Department of Neurology for supporting With large materials and many processes, this is difficult. the study. Supplementing the findings of the action research processes with the application of Ricoeur's52 text model provided an opportunity to CONFLIC T OF INTEREST achieve further insight in addition to local development of knowledge The authors declare no conflict of interest. and solutions hoping to increase the travelling capacity concerning how the local knowledge can attain value and rigour to be DATA AVAILABILITY STATEMENT recognizable and usable in other settings and communities.72 The data that support the findings of this study are available on Working with the local staff's attitudes and approaches to request from the corresponding author. facilitate patient participation led to their renewed understanding and knowledge. However, we only had the opportunity to involve 8 out ORC I D of 50 nursing staff members at the centre in the processes, which Randi Steensgaard http://orcid.org/0000-0003-1119-7315 limited the personal involvement to a section of the entire group. The participating nursing staff actively applied for participation and they RE F ER EN CES chose to participate out of interest with the risk of not being 1. Eldh AC. Facilitating patient participation by embracing patients' representative of the larger group. preferences—a discussion. J Eval Clin Pract. 2019;25:1070‐1073. doi:10.1111/jep.13126 Even though rehabilitation is an interdisciplinary task,55 we chose 2. Kitson A, Marshall A, Bassett K, Zeitz K. What are the core elements only to include nursing staff in this study. Therefore, the findings only of patient‐centred care? A narrative review and synthesis of the reflect the nursing contribution to rehabilitation. literature from health policy, medicine and nursing. J Adv Nurs. In rehabilitation, the use of ICF as a reference system is central.73 2013;69(1):4‐15. doi:10.1111/j.1365-2648.2012.06064.x 3. McCormack B, Dulmen AM van, Eide H, Skovdahl K, Eide T, eds. The ICF was not an explicit frame, but by listening to the patient Person‐Centred Healthcare Research. Wiley‐Blackwell; 2017. thoughts and needs, different biopsychosocial elements were 4. Sahlsten MJM, Larsson IE, Sjöström B, Plos KAE. An analysis of the automatically touched. Nevertheless, this could be more interesting concept of patient participation. Nurs Forum. 2008;43(1):2‐11. to explore further. doi:10.1111/j.1744-6198.2008.00090.x 2532 | STEENSGAARD ET AL. 5. World Health Organization. World Report on Disability. (Officer A, 25. Angel S. The fight for a meaningful life. Sygeplejersken Danish J Nurs. Posarac A, eds). World Health Organization (WHO); 2011. 2009;109(17):48‐53. 6. Coulter A, Ellins J. Patient‐focused interventions a review of the 26. Angel S. Patientdeltagelse under rehabilitering efter en rygmarvss- evidence. 2006. Accessed August 30, 2019. www.health.org.uk/ kade. Journal Tidskrift for Sygeplejeforskning. 2010;26(1):20‐25. QQUIP 27. Maribo T, Jensen CM, Madsen LS, Handberg C. Experiences with 7. Weingart SN, Zhu J, Chiappetta L, et al. Hospitalized patients' and perspectives on goal setting in spinal cord injury rehabilitation: a participation and its impact on quality of care and patient safety. Int systematic review of qualitative studies. Spinal Cord. 2020;58(9): J Qual Health Care. 2011;23(3):269‐277. doi:10.1093/intqhc/mzr002 949‐958. doi:10.1038/s41393-020-0485-8 8. World Health Organization. International Classification of Function- 28. King E, Taylor J, Williams R, Vanson T. The Magic Programme: ing, Disability and Health; 2001. Evaluation. The Health Foundation. 2013. 9. Melin J, Persson LO, Taft C, Kreuter M. Patient participation from 29. Goodridge D, Mcdonald M, New L, et al. Building patient capacity to the perspective of staff members working in spinal cord injury participate in care during hospitalisation: a scoping review. BMJ rehabilitation. Spinal Cord. 2018;56(6):614‐620. doi:10.1038/ Open. 2019;9(7):026551. doi:10.1136/bmjopen-2018-026551 s41393-018-0061-7 30. Longtin Y, Sax H, Leape LL, Sheridan SE, Donaldson L, Pittet D. Patient 10. Scheel‐Sailer A, Post MW, Michel F, Weidmann‐Hügle T, participation: current knowledge and applicability to patient safety. Mayo Baumann Hölzle R. Patients' views on their decision making during Clin Proc. 2010;85(1):53‐62. doi:10.4065/mcp.2009.0248 inpatient rehabilitation after newly acquired spinal cord injury—a 31. Légaré F, Adekpedjou R, Stacey D, et al. Interventions for increasing qualitative interview‐based study. Health Expect. 2017;20(5): the use of shared decision making by healthcare professionals. 1133‐1142. doi:10.1111/hex.12559 Cochrane Database Syst Rev. 2018;7:006732. doi:10.1002/ 11. Lindberg J, Kreuter M, Taft C, Person LO. Patient participation in 14651858.CD006732.pub4 care and rehabilitation from the perspective of patients with spinal 32. Jangland E, Gunningberg L. Improving patient participation in a cord injury. Spinal Cord. 2013;51(11):834‐837. doi:10.1038/sc. challenging context: a 2‐year evaluation study of an implementation 2013.97 project. J Nurs Manag. 2017;25(4):266‐275. doi:10.1111/jonm.12459 12. Angel S, Kirkevold M, Pedersen BD. Getting on with life following a 33. Elwyn G, Frosch DL, Kobrin S. Implementing shared decision‐ spinal cord injury: regaining meaning through six phases. Int J Qual making: consider all the consequences. Implement Sci. 2016;11:114. Stud Health Well‐Being. 2009;4(1):39‐50. doi:10.3402/qhw.v4i1.4999 doi:10.1186/s13012-016-0480-9 13. Chen H, Boore J. Considering the physiological and psychological 34. Gustavsson SM, Andersson T. Patient involvement 2.0: experience‐ consequences of spinal cord injury. Br J Neurosci Nurs. 2005;1(5): based co‐design supported by action research. Action Res. 2019; 225‐232. 17(4):469‐491. doi:10.1177/1476750317723965 14. Dickson R, Allan A, O'Carroll D. Biographical disruption and the 35. Meyer J. Qualitative research in health care: using qualitative experience of loss following a spinal cord injury: an interpretative methods in health related action research. BMJ 2000;320: phenomenological analysis. Psychol Health. 2008;23(4):407‐425. 178‐181. 15. Geisler FH, Coleman WP, Benzel E, et al. Spinal cord injury. Lancet. 36. Waterman H, Marshall M, Noble J, et al. The role of action research 2002;359:417‐425. in the investigation and diffusion of innovations in health care: the 16. Middleton J, Tran Y, Craig A. Relationship between quality of life and PRIDE Project. Qual Health Res. 2007;17(3):373‐381. self‐efficacy in persons with spinal cord injuries. Arch Phys Med 37. Montgomery A, Doulougeri K, Panagopoulou E. Implementing action Rehabil. 2007;88(12):1643‐1648. doi:10.1016/j.apmr.2007.09.001 research in hospital settings: a systematic review. J Health Organ Manag. 17. Savic G, DeVivo MJ, Frankel HL, Jamous MA, Soni BM, Charlifue S. 2015;29(6):729‐749. doi:10.1108/JHOM-09-2013-0203 Suicide and traumatic spinal cord injury—a cohort study. Spinal Cord. 38. Bradbury H. Introduction: how to situate and define action research. 2018;56(1):2‐6. doi:10.1038/sc.2017.98 In: Bradbury H, ed. The SAGE Handbook of Action Research. SAGE 18. Le J, Dorstyn D. Anxiety prevalence following spinal cord injury: a Publication; 2015:1‐13. meta‐analysis. Spinal Cord. 2016;54(8):570‐578. doi:10.1038/sc. 39. Greenwood D, Levin M. Introduction to Action Research Social 2016.15 Research for Social Change. 2nd ed. SAGE Publication Inc.; 2007. 19. Williams R, Murray A. Prevalence of depression after spinal cord 40. Nielsen KA, Nielsen SB. Methodologies in action research. In: injury: a meta‐analysis. Arch Phys Med Rehabil. 2015;96(1):133‐140. Nielsen KA, Svensson L, eds. Action and Interpretive Research. Shaker doi:10.1016/j.apmr.2014.08.016 Publishing; 2006:63‐88. 20. Gendreau A, de la Sablonnière R. The cognitive process of identity 41. Dewey J. Democracy and Education. Sheba Blake Publishing; 2015. reconstruction after the onset of a neurological disability. Disabil 42. Dewey J. Construction and criticism. In: Boydston JA, ed. John Rehabil. 2014;36(19):1608‐1617. doi:10.3109/09638288.2013. Dewey—The Later Work 1925‐1953. Southern Illinois University; 859749 1988:125‐145. 21. van de Velde D, Coussens M, de Baets S, et al. Application of 43. Coghlan D. Doing Action Research in your own Organization. 5th ed. participation in clinical practice: key issues. J Rehabil Med. SAGE Publications Ltd.; 2019. 2018;50(8):679‐695. doi:10.2340/16501977‐2363 44. Lewin K. Action research and minority problems. J Soc Issues. 22. van de Velde D, Bracke P, van Hove G, Josephsson S, 1946;2(4):34‐46. Vanderstraeten G. Perceived participation, experiences from per- 45. Bargal D. Personal and intellectual influences leading to Lewin's sons with spinal cord injury in their transition period from hospital to paradigm of action research. Action Res. 2006;4(4):367‐388. doi:10. home. Int J Rehab Res. 2010;33(4):346‐355. doi:10.1097/MRR. 1177/1476750306070101 0b013e32833cdf2a 46. Borup Jensen J. Musik, kunst og æstetisk læring [Music, art 23. Angel S, Frederiksen KN. Challenges in achieving patient participa- andaesthetic learning]. In: Duus G, Kildedal K, Laursen E, tion: a review of how patient participation is addressed in empirical Tofteng D, eds. Aktionsforskning—En Grundbog [Action research—A studies. Int J Nurs Stud. 2015;52(9):1525‐1538. doi:10.1016/j. textbook]. Samfundslitteratur; 2014:159‐170. ijnurstu.2015.04.008 47. Cole AL, Knowles JG. Arts‐informed research. In: Knowles JG, 24. Angel S, Kirkevold M, Pedersen BD. Rehabilitation after spinal cord Cole AL, eds. Handbook of the Arts in Qualitative Research. Sage injury and the influence of the professional's support (or lack Publications Inc.; 2008:55‐70. thereof). J Clin Nurs. 2011;20(11‐12):1713‐1722. 48. McNiff S. Art‐Based Research. Jessica Kingsley Publishers; 1998. STEENSGAARD ET AL. | 2533 49. Titchen A, McCormack B. A methodological walk in the forest: 64. Kirkevold M. The role of nursing in the rehabilitation of stroke critical creativity and human flourishing. In: Manley K, survivors. ANS Adv Nurs Sci. 2010;33(1):E27‐E40. doi:10.1097/ANS. McCormack B, Wilson V, eds. International Practice Development in 0b013e3181cd837f Nursing and Healthcare. Blackwell Publishing Ltd.; 2009. 65. Loft MI, Poulsen I, Esbensen BA, Iversen HK, Mathiesen LL, 50. McCormack B, Dewing J. Action research: working with transforma- Martinsen B. Nurses' and nurse assistants' beliefs, attitudes and tional intent. Klinisk Sygepleje. 2012;26(3):4‐14. actions related to role and function in an inpatient stroke 51. McCormack B, Henderson E, Boomer C, Collin I, Robinson D. rehabilitation unit‐A qualitative study. J Clin Nurs. 2017;26(23‐24): Participating in a collaborative action learning set (CAL): beginning 4905‐4914. doi:10.1111/jocn.13972 the journey. Action Learn Res Pract. 2008;5(1):5‐19. 66. Loft MI, Poulsen I, Martinsen B, Mathiesen LL, Iversen HK, 52. Ricœur P. Interpretation Theory: Discourse and the Surplus of Meaning. Esbensen BA. Strengthening nursing role and functions in stroke Texas Christian University Press; 1976. rehabilitation 24/7: a mixed‐methods study assessing the feasibility 53. Ricoeur P. The hermeneutical function of distanciation. Philos Today. and acceptability of an educational intervention programme. Nurs 1973;17(2):129‐141. doi:10.5840/philtoday197317233 Open. 2019;6(1):162‐174. doi:10.1002/nop2.202 54. Eldh AC, Årestedt L, Berterö C. Quotations in qualitative studies: 67. Pellatt G. Perceptions of the nursing role in spinal cord injury reflections on constituents, custom, and purpose. Int J Qual rehabilitation. Br J Nurs. 2003;12(5):292‐299. Methods. 2020;19:160940692096926. doi:10.1177/160940692 68. Portillo MC, Cowley S. Working the way up in neurological rehabilitation: 0969268 the holistic approach of nursing care. J Clin Nurs. 2011;20(11‐12): 55. Wade DT. What is rehabilitation? An empirical investigation leading 1731‐1743. doi:10.1111/j.1365-2702.2010.03379.x to an evidence‐based description. Clin Rehabil. 2020;34(5):571‐583. 69. McCormack B, McCance T, Donna B, Cathy B, Ailsa M, Martin S. The doi:10.1177/0269215520905112 future of person‐centred practice—a call to action!. In: 56. Negrini S, Selb M, Kiekens C, et al. Rehabilitation definition for McCormack B, McCance T, Bulley C, Brown D, McMillan A, research purposes. A global stakeholders' initiative by cochrane Martin S, eds. Fundamentals of Person‐Centred Healthcare Practice. rehabilitation. Eur J Phys Rehabil Med. 2022;58:333‐341. doi:10. Wiley‐Blackwell; 2021:350. 23736/S1973-9087.22.07509-8 70. Duus G. Validitet [Validity]. In: Duus G, Husted M, Kildedal K, 57. Kitson AL, Athlin MT. Anything but basic: nursing's challenge in Laursen E, Tofteng D, eds. Aktionsforskning—En Grundbog [Action meeting patients' fundamental care needs. J Nurs Scholarsh. research—A textbook]. Samfundslitteratur; 2012:113‐129. 2014;46:331‐339. 71. Reason P. Choice and quality in action research practice. J Manag Inq. 58. Yun D, Choi J. Person‐centered rehabilitation care and outcomes: a 2006;15(2):187‐203. doi:10.1177/1056492606288074 systematic literature review. Int J Nurs Stud. 2019;93:74‐83. doi:10. 72. Hummelvoll JK, Eriksson BG, Cutcliffe JR. Local experience—central 1016/J.IJNURSTU.2019.02.012 knowledge? Methodological and practical implications for knowl- 59. Levack WM, Weatherall M, Hay‐Smith JC, Dean SG, edge development in local mental health care settings. Nordic Nurs McPherson K, Siegert RJ. Goal setting and strategies to enhance Res. 2015;5(03):283‐295. goal pursuit in adult rehabilitation: summary of a Cochrane 73. Zampolini M, Stucki G, Giustini A, Negrini S. The individual systematic review and meta‐analysis. Eur J Phys Rehabil Med. rehabilitation project: a model to strengthen clinical rehabilitation 2016;52(3):400‐416. in health systems worldwide. Eur J Phys Rehabil Med. 2020;56(1):1‐4. 60. Martinsen K. Care and vulnerability. Akribe; 2006. doi:10.23736/S1973-9087.19.06110-0 61. Martinsen K. Emotionally Affected: the Holy Grail of the Healthcare Service [Bevegelig Berørt: Det Hellige i Helsevesenet]. Fagbokforla- get; 2018. 62. McCormack B, McCance T, Martin S. What is person‐centredness. How to cite this article: Steensgaard R, Kolbaek R, Angel S. In: McCormack B, McCance T, Bulley C, Brown D, McMillan A, Nursing staff facilitate patient participation by championing Martin S, eds. Fundamentals of Person‐Centred Healthcare Practice. the patient's perspective: an action research study in spinal Wiley‐Blackwell; 2021:350. cord injury rehabilitation. Health Expect. 2022;25:2525‐2533. 63. Christiansen B, Feiring M. Challenges in the nurse's role in rehabilitation contexts. J Clin Nurs. 2017;26(19‐20):3239‐3247. doi:10.1111/hex.13574 doi:10.1111/jocn.13674