Patients’ experiences with goal setting during initial rehabilitation after newly acquired spinal cord injury: A pilot qualitative interview study

Abstract

Objective

To explore patients’ experiences with goal setting during initial rehabilitation after newly acquired spinal cord injury/disorder (SCI/D).

Design

Qualitative design with semi-structured interviews and purposively sampled participants. Interviews were transcribed verbatim. Transcripts were analyzed for qualitative content analysis using the Mayring method.

Setting

Specialized acute care and rehabilitation center for SCI/D-patients.

Participants

Patients in initial rehabilitation after a newly acquired SCI/D.

Interventions

n.a.

Outcome measures

n.a.

Results

Ten participants were interviewed in the post-acute phase after a newly acquired SCI/D. Participants described individual patient characteristics as well as organizational elements influencing their experience with goal setting. Organizational elements comprised structural elements (e.g. ward rounds, rehabilitation meetings, etc.) and interaction with and among the interprofessional teams. Perspectives from various health care professionals (HCPs) were perceived as increasing adequate goal setting and motivation. Furthermore, the participants described their own involvement and motivation as crucial for goal achievement. The main point of the critique was the standardization of the goal setting process. Interviewees would have preferred individualized goal setting embedded in a clearly foreseeable rehabilitation plan.

Conclusion

Organization and collaboration with and among the HCPs should be geared towards identifying specific patient needs during the course of rehabilitation and deriving individually tailored goals from them. Communication plays an important role in the individual goal setting.

Introduction

Spinal cord injury and spinal cord disorder (SCI/D) belong to a complex health condition that influences a person’s functioning on all levels described in the biopsychosocial model of the International Classification of Functioning, Disability and Health (ICF).¹ Therefore, a holistic ICF-based rehabilitation concept is recommended² to optimize functioning and a person's ability to participate in his/her environment.³ In order to fully individualize the biopsychosocial approach of rehabilitation, patient involvement must be ascertained. Patient-centered communication is a key competency to allow shared decision making and to tailor the rehabilitation process to the individual patient. A recent review article revealed that patient-centered self-management education programs can help establish a partnership with patients and relatives by paying attention to the narrative of each patient.⁴ The study showed that in this way, rehabilitation goals that matched the individual patient’s perspective were reached more frequently.^5,6 Even though a multi-dimensional description of the functioning after a newly acquired SCI/D is increasingly established and implemented into the clinical management,⁷ patients’ engagement in the rehabilitation process remains challenging. Additionally, Redley et al. described three types of patient participation in acute inpatient medical ward rounds: active control, shared-control and low control preferences that indicate new supporting strategies promoting patient-tailored participation.⁸

The Rehab-Cycle© is a conceptional framework integrating the different repetitively performed components of rehabilitation. These components include problem analyses, assessments, intervention planning and goal setting by involving the patient's preferences and needs.⁹ To determine a patient's resources and problems, he or she must undergo a baseline assessment of their health status. This ICF-based assessment allows health care professionals (HCPs) to define goals and determine the next steps jointly. Usually, this includes a definition of problem areas and appropriate interventions. In a next step, interventions are mapped to specific competencies of HCPs (e.g. nursing, speech therapy, physiotherapy, medical therapy). After interventions have been executed, their efficacy is evaluated, progress or remaining functional deficits are described, and the whole cycle starts again.¹⁰

Collaborative goal setting between patients and interprofessional teams (IPTs) is a crucial part of rehabilitation.^5,11 Goal setting is a multifaceted and rather complex process with numerous influencing factors.¹² As not every patient is initially able to take responsibility for the course of rehabilitation, one over-arching goal is patient empowerment in order to improve self-efficacy¹³ and increase their share in decision making.¹⁴ A well-known technique of goal setting is called SMART (specific, measurable, achievable, relevant, time bound), having its roots in management theories¹⁵ and being applied in some rehabilitation settings.¹⁶ The technique is used to formulate clear goals that provide direction, motivation and focus and is, therefore, a prerequisite for measurable success. However, there is no current agreement on the best approach for everyday practice in rehabilitation clinics. In addition, it remains unclear how competent patients with complex limitations in biopsychosocial functioning, such as SCI/D, can really get and whether goal setting skills can be developed during the course of initial rehabilitation.^17,18

The aim of this study was to explore patients’ experiences of goal setting in the rehabilitation process after newly acquired SCI/D. Ultimately, the findings may inform tailored training programs for HCPs.

Materials and methods

Study design and setting

A qualitative semi-structured interview study was conducted at a specialized acute care and rehabilitation center for SCI/D-patients.

In the center, IPTs consisted of doctors, nurses, physiotherapists, occupational therapists, psychologists and social workers. The teams followed the Rehab-Cycle© described above and used the ICF classification. Goal setting took place in bi-weekly “goal setting visits” on the ward; the meeting consisted of a discussion among HCPs without patient participation and a visit of the IPT with the patient. HCPs discussed their views on the patient's clinical status with input from every specialty involved in rehabilitation (e.g. success of blood pressure control, bowel and bladder management, lung function, transfer ability, wheelchair handling). This resulted in the definition of goals for the next two weeks from a medical perspective (e.g. blood pressure control should be optimized, spasticity reduced, transfer performed safely and independently). After having elaborated rehabilitation goals for the next two weeks from a medical perspective, the IPT entered the patient’s room and started by asking them what their rehabilitation goals are. Then, healthcare providers presented the achieved goals of the last two weeks as well as the new goals for the next two weeks. In the end, a common main goal for the IPT and the patient was formulated. In order to support teams in their ability to elicit the patients’ perspective, mandatory communication training was implemented in 2014 based on the Basel communication concept¹⁹ and in line with the national communication guideline.²⁰ The Basel communication concept comprises an interprofessional communication skills training. It uses the didactic element “critical incident report” as the starting point for the application of communication elements.

Sampling and recruitment of participants

To recruit patients, purposive sampling was applied, whereby a balance between age groups, sex and SCI/D was sought. Inclusion criteria were: (1) Paraplegic or tetraplegic patients being treated at the clinic during initial rehabilitation, (2) above 16 years of age, (3) competent to understand the study goals and to decide independently, (4) being able to communicate in German or English, and (5) at least 3 months after newly acquired SCI/D and a minimum of 4 weeks before discharge. Patients with acute medical problems (e.g. severe infections), patients in a palliative care setting or with a progressive disease were excluded from the study. Patients were approached face-to-face to ask about participation and to inform them about the study. All patients who were approached wanted to participate and gave written consent. The study followed the good clinical practice guidelines and the COnsolidated criteria for REporting Qualitative research.²¹

Data generation

Interviews were conducted by a trained researcher (FH) with a communication background without clinical responsibility between October and December 2019. He used a semi-structured interview guide, which was created in collaboration with a physician experienced in rehabilitation and an expert in communication (AS, SR) (see Appendix). The interview guide was pre-tested and adapted with the help of an HCP with a paraplegia. Interviews were conducted individually, except in one case, where the participant’s spouse was additionally present. The interviews took place during the ongoing rehabilitation process, mainly on weekends and after the daily scheduled rehabilitation program. They were audio-recorded and transcribed verbatim following a transcription and coding guide. In case of uncertainties the wording was double checked by AS. Transcripts were not returned to participants because they had been discharged and contact information had not been gathered. Interviews nine and ten were used for saturation proof and no new aspects came up.

Data analysis

Transcripts were analyzed by two researchers independently (FH, PL) according to the structured inductive content analysis of Mayring.^22,23 In a first step, we (FH, PL) decided to use the structure of the developed interview guide as the starting point and reference level for category formation. Secondly, we worked through the text a second time to detect new categories and subsumptions, while re-organizing the coding structure. Then, the coding structure was discussed among the two researchers (FH, PL) and the senior experts (AS, WL, SR) in order to detect overarching themes and topics. The coding was performed with the MAXQDA program (Version MAXQDA Analytics Pro 2020, release version 20.0.7). Additional quantitative data consisted of age, sex, lesion level and American Spinal Injury Association Impairment Scale (AIS)-score, which were extracted from the hospital-internal database MedFolio (Nexus, Switzerland).

Results

The final sample comprised 10 participants, six males and four females, with a mean age of 58 years; none dropped out. The interviews lasted between 22 and 63 min (see Table 1).

Table 1.

Patient characteristics.

Participant ID	Sex	Age group	Lesion type and classificationa	Trauma (yes/no)
ST01	m	50–65	Complete paraplegia (AIS A)	Yes
ST02	f	66+	Incomplete tetraplegia (AIS C)	No
ST03	m	50–65	Incomplete paraplegia (AIS B)	No
ST04	f	50–65	Complete paraplegia (AIS A)	Yes
ST05	m	16–49	Complete paraplegia (AIS A)	Yes
ST06	f	66+	Incomplete paraplegia (AIS C)	No
ST07	m	66+	Complete paraplegia (AIS A)	No
ST08	f	16–49	Complete paraplegia (AIS A)	Yes
ST09	m	66+	Incomplete tetraplegia (AIS C)	Yes
ST10	m	16–49	Complete tetraplegia (AIS A)	Yes

^aAIS Classification: AIS Grade A: Complete – No motor or sensory function is preserved in the sacral segments S4-S5; AIS Grade B: Incomplete – Sensory but not motor function is preserved below the NLI and includes the sacral segments S4-S5; AIS Grade C: Incomplete – Motor function is preserved below the NLI, and more than half of key muscles below the NLI have a muscle grade less than 3; AIS Grade D: Incomplete – Motor function is preserved below the NLI, and at least half of key muscles below the NLI have a muscle grade of 3 or more; AIS Grade E: Normal – Motor and sensory function is normal

Overall, participants identified different aspects of the ICF-based rehabilitation and described two main factors influencing their goal setting experience: organizational aspects and personal characteristics. Organizational aspects consisted of structural elements of the clinic, as well as elements concerning the patient's perspectives of the IPT. Personal characteristics comprised patient-related characteristics that influenced the goal setting process (see Fig. 1).

Figure 1.

Overview of patient's goal setting experience

Organizational aspects

Structural elements

Participants mentioned structural elements, e.g. the organization of ward rounds, activity visits, goal setting visits and other settings within the clinic in which patients’ contributions are invited, like the “patient board” in the patients’ room where individual rehabilitation goals and progress are documented. Even though all participants mentioned various structural elements, their personal experience varied largely according to how helpful an element was felt (Q1-Q2). A common theme, however, was a lack of orientation and general overview (Q3). While the value of structural elements was discussed inconsistently, all interviewees agreed that goal setting itself should be tailored to the needs of every single person (Q4) and not follow a standard procedure (Q5) (see Table 2).

Table 2.

Quotes about structural elements.

Q1	In theory, I find that [goal setting visit] unnecessary. You always see everyone anyway, just individually instead of all together. It's not that important for me, I must honestly say. (ST01)
Q2	I think that [patient board] is a positive thing. (ST02)
Q3	I can't remember the conversation at all. It becomes a bit blurred, with the physician's visit, goal setting visit, admission conversation. Somehow everything is a bit the same. At the beginning, you have no idea, you're trapped in the room, you have zero idea how much there is around you […]. (ST05)
Q4	Rehabilitation can only take place on a personal basis and not in such a factory-like procedure. Outwardly these may be always the same steps, but not really to get the motivation out […] that can only be done in a personal conversation, that can only be done in personal care. (ST06)
Q5	It is more just my own goal, which is quite far away from the goals of the therapists. There I experience it that many unwind a standardized process. […] But the individual goals are selected from a catalog of established goals. I am not super satisfied with this process, which in a way – like text modules, which are inserted into the boxes. (ST05)

Patient's perspectives of interprofessional teams

Participants described the goal setting process as a result of their interaction with the IPT. Three main topics had a positive impact on the collaborative process of goal setting.

Interprofessional collaboration. Participants explained that their rehabilitation progress depended on the input from different professional groups. They claimed that the setting of treatment goals had to result from their interaction with an IPT (Q6). The inclusion of different perspectives and long-standing experience with SCI/D were mentioned as helpful in setting adequate goals (Q7-Q8). These factors were associated with trust and a feeling of security (Q9). However, especially when the whole IPT was present during goal setting visits/ ward rounds, some patients felt overwhelmed and looked down upon (Q10). One participant stated that the hierarchy among members of the IPT, especially doctors being more influential than nurses, influenced the amount of patient-centeredness negatively (Q11). A few participants suggested that one person from the IPT should be in charge to coordinate the rehabilitation process and help prioritize goals (Q12) (see Table 3).

Table 3.

Quotes about patients’ perspectives of interprofessional teams – Interprofessional collaboration.

Q6	Yes, these are all those who are responsible for the care here. Occupational therapists and physiotherapists and the social services and the doctors. So, they all help with goal setting. (ST03)
Q7	If you have different physio people, everyone does it a little bit differently. And that helps you a lot. For example, turning in bed. Like me, you can do it only with your hands/arms. A small detail, which is explained differently, suddenly it works. (ST01)
Q8	And to like the rehabilitation to continue, because you see, that, there are people who give tips, or there is someone who gives tips, who has worked here for many years […]. (ST06)
Q9	But ehm, yes, that the people [IPT] are here, that already gives trust that everybody in the clinic is working together, that you're getting better. (ST05)
Q10	Oh totally. I mean now it’s not overwhelming, I still don’t like it because I don’t like people talking down to me. But definitely overwhelming in the beginning. Definitely. (ST04)
Q11	I notice at the goal setting visit saying I want to do this and that … . That it doesn't come through that way. Maybe also because there are too many other white coats [physicians] standing there and they are like controlling each other. (ST05)
Q12	And I even understand it. Because not every patient is willing, able, or even keen on being personally attended to. But I would have had that claim. (ST06)

Motivation of the patient. Being motivated and determined were deemed crucial for a successful goal setting process (Q13). One participant highlighted the importance of wanting to be engaged (Q14) and another participant explained that successful experiences increased the motivation (positive reinforcement cycle) (Q15). Treatment by different HCPs was considered a potential factor for success. Interviewees stated that HCP's different tips and tricks helped to achieve a task that initially seemed impossible (Q16). Furthermore, it was interesting to see that some interviewees mentioned other people as important for their motivation: two participants said that taking part in physiotherapy motivated them a lot, either due to quite frequent therapy sessions (almost daily) or a good personal relationship with the therapists (Q17). Another interviewee found that goal setting itself e.g. the pressure of reaching the goal, was helpful to move forward and overcome a lack of motivation (Q18) (see Table 4).

Table 4.

Quotes about patients’ perspectives of interprofessional teams – Motivation of the patient.

Q13	It also depends on the will you have to get as far as possible. (ST09)
Q14	Without will, you can't do anything. You can't go about it half-heartedly. That's all I know now. You have to be present, you have to want it. Yes. (ST01)
Q15	And then different aspects of functioning came back and I was lucky now that these aspects of functioning came back step by step that that was motivation for me to speed up this process again […]. (ST09)
Q16	There is someone who doesn't know me at all, who is here for half a day, who helps out, and gives you such a wonderful tip. […] “Yes, do that” and it works. It's wonderful, and then you have hope again. (ST06)
Q17	I don’t know, I think I have a very good, ehm, relationship with my therapist and my team, so say, the nurse here, who would be setting the goals for nursing, the doctors. I think relationships is probably very important. So, for me that, ehm, having that relationship and being in sync with them, ehm, every day I think that that really helps you for your goal setting process […]. (ST04)
Q18	If I didn't have any more goals, then the motivation wouldn't be there at all. Otherwise, you give up right away. And so, you still see, people work with you, they don't just give up on you. (ST02)

Framing of goal setting. All participants underlined goal setting to be an important aspect of life in general and in the rehabilitation process specifically (Q19) and thought that their own involvement in goal setting was of great importance (Q20). Participants even described that their engagement in the goal setting process improved the success of their goal achievement (Q21). However, participants acknowledged that they differed largely as to their individual approaches to rehabilitation and their preferences of involvement, some preferring a more passive stance. One participant did not trust her ability to make prudent choices: she wanted experienced HCPs to take over responsibility and did not question any of their suggestions (Q22). Other participants were keen to be part of the rehabilitation process, felt that they were taken seriously and were satisfied with the IPT (23). Nevertheless, some participants were unhappy with the degree of patient-centeredness and expressed a desire for a more pronounced participation and shared decision making. They felt left out and reacted by criticizing, shutting down and formulating their own goals independently (Q24), while others continued demanding “more of everything” (additional methods and therapeutic interventions that are not part of the rehabilitation setting at the clinic) (Q25).

During the course of rehabilitation, goals should be realistic, regularly adjusted and evaluated before new goals are considered (Q26). Setting goals too high or vague goals that are not easily operationalized was described as upsetting for some participants and as a result the whole process of goal setting was perceived as unnecessary (Q27-Q28). However, participants also mentioned that their goal setting skills improved significantly during the rehabilitation process; they learned to break down the “big goal” into manageable steps (Q29).

Some participants did not find that the HCPs took the goal setting process seriously enough. They assumed that some goals were quickly ticked off when time was running short or true interest was lacking (Q30). As a consequence, it was requested of HCPs to adapt to each individual patient and help contribute to the goal setting process in a committed and authentic way (Q31).

Another topic mentioned by half of the interviewees was their not knowing their long-term goals, what the expected outcome was and what this meant for the whole rehabilitation process. Participants wanted more SCI/D specific information on additional therapies (e.g. functional electro-stimulation, robotic support, swimming with specific aids, etc.) more prognostic information and, in general, more time spent talking about the future (Q32-Q33). Additionally, two participants criticized HCP's not giving them the whole picture about their health status. They assumed that HCPs did not want to give discouraging information and did not want them to lose hope. Two participants stated that the full truth would have been beneficial for their commitment to the goal setting and rehabilitation processes (Q34-Q35) (see Table 5).

Table 5.

Quotes about patients’ perspectives of interprofessional teams – Framing of goal setting.

Q19	In life, whether you are healthy or disabled, goal setting is always the most important thing. Without goals, you get lost. And if you have a goal, then you have a line. From my point of view, this is an incredibly important step. And without setting goals, you don't get anywhere in life. (ST02)
Q20	No, I think it is important to get yourself involved because sometimes you don't exactly have the same roadmap in mind as doctors or therapists. (ST10)
Q21	Yes, if I didn't get involved, I would just get it over with. What I put in feels different, if I am involved in the goal-setting process myself, then I certainly handle the execution differently as well. (ST03)
Q22	That I get to the big goal, the sequence of the small goals, that's not up to me, they have to give that to me here. What do I start with, do I start with putting on clothes or do I start with the transfer or do I start with, what do I know. It's about them showing me what the goals are. (ST01)
Q23	Ah, I feel well involved there. There are somehow ten people in the room and they all say something and I have to say at the end whether it is good or not. (ST03)
Q24	No, I think I'm doing very well. I choose my own goals now. I say what I want to learn. Although sometimes they say “yes, you should do that” and I say no. I know better what I want, what goals are more important for me and what I want to do. I'm sure about that. I see clearly what I need to do, what I need to learn. I see it all clearly. (ST08)
Q25	So, and I think for Nottwil and this center, they do a really good job on rehabilitation as far as the goal is an individual being able to function as independently as they’re capable of, once they leave the facility. I mean I think everybody has the same end goal. And I think they do really good at that. If you want extra, you want to do something even slightly outside of what is considered rehabilitation, that is not something that you’ll get here. I mean there’s not, I don’t know what that extra is, but maybe something that’s a little bit more experimental or, I don’t know, I think they have a very conservative approach in treating all patients equally, or all types of different groups of patients equally based on what type of injury they have. (ST04)
Q26	Ehm, whereby it is important that one checks this, because it could perhaps, also if one sees, how the progress is, one would have to reduce the goals perhaps or also say, maybe there is more possible. (ST07)
Q27	I think that's always the risk when the goals are formulated too openly. Or they are too big. You know that you won't achieve it in two weeks anyway, so you just write the same thing again in two weeks. And depending on that, not necessarily done much. (ST10)
Q28	If these are good therapists, then the goals are actually small steps, which are associated with effort, but are achievable. And then there are also therapists who set the goal or requirements too high, where you then fall on your face. That has happened to me twice now. (ST09)
Q29	Yes, I have learned to set very small goals. Not such a big goal that I'll never reach. But rather very small steps. To break the goal down into small pieces, so to speak, and to build it up in such a way that I can see progress. That's what I was missing at the beginning. (ST06)
Q30	There are areas of improvement. Ehm. I think it needs to be something more, if the therapist or the doctors just checking the box, okay I just did my goal, check, got that completed, you know they need to be an active part of the process. And you know, take it seriously as well. (ST04)
Q31	That's what I meant, you have to listen to the patient. He feels that. […] And if you miss that, the trust gradually disappears. Afterwards you become stubborn, then you say I'll only do what's good for me, done, that's it. (ST06)
Q32	And what might also be helpful is to think about what goals could be set in two or three months, so that you have a bit larger, higher-level goals from which you can derive smaller goals. (ST10)
Q33	I would find it important. If I could also see the big end goal or the range from the possible goal better, then I would find it important. Not such a … Right now, the way things are going, […] it's not that important. (ST05)
Q34	It is always just the next … But this is generally my criticism here, if you talk with any therapist, nobody wants to commit to anything concerning a prognosis, only to formulate the next goal behind it. Nobody wants to do that in front of the patient or in front of other white coats [physicians]. […] This is extremely frustrating. (ST05)
Q35	And, in rehabilitation, it's really important, there, real, that someone sits and says, I'm sorry, this is a little bit too much for your situation. But nobody says that. Nobody dares to do that. You don't want to depress people into giving up prematurely. I can see the motivation behind this, why you go easy on them, but that's wrong in my eyes. (ST06)

Personal characteristics

The interviewees mentioned several personal characteristics influencing the goal setting process. The severity of SCI/D, the current state of health and the psychological aspect were mentioned in almost every interview (Q36-Q38). Secondly, HCPs and other team members with a non-medical background (cleaning personnel, hotel assistants, transport facilities, etc.) as well as family members, friends and peers were perceived as a major support (Q39-Q41). Lastly, socioeconomic factors such as financial status, experience with complicated situations (e.g. in the job or the degree of one's personal life) played a major role in the goal setting process (Q42-Q43) (see Table 6).

Table 6.

Quotes about personal characteristics.

Q36	This is simply the state of health or the degree of paralysis. Because that all influences together. How high am I paralyzed, for a tetraplegic the goals are completely different than for a paraplegic. (ST03)
Q37	Yes, certainly the state of health. I've been in bed for three weeks now, or three weeks in November. Then you have very different goals, compared to when you're healthy and you can move forward with rehabilitation. (ST10)
Q38	I think psychologically and emotionally where people are, the state of mind is also a very big factor. (ST04)
Q39	Motivation of the family. I think that's important. They see how you were 5–6 months ago, when you were still struggling with your life. Now you can do practically everything on your own. That is a thank you to the family you have at home. They support you, too, of course. And also, in your difficult moments, which you still have in between. (ST01)
Q40	My circle of friends, sure. Not necessarily actively, but kind of (laughs). Ehm. Interacting with them helps me set goals, sure. And then afterwards, some fellow patients or veterans. They're the most likely to help me set goals. Positive examples of initial rehabilitation patients that I've seen, or others doing re-rehabilitation or something. (ST05)
Q41	So, the great people who are here help me. And they treat me so well. The treatment of them, the appearance in the morning, how they wake me up. […] It's simple, they are all dear people. It doesn't matter who comes. Whether it's a room attendant, a handyman who has to do something. (ST02)
Q42	Ehm, I believe so. But even if I – I think so. I mean I’m super familiar with the process since my job is a professional and you know, and I lead a very big team, so yeah, I mean goal setting is a very big, you know, when you’re, as a manager/leader it’s very important that people know what they’re working on, they know what their goals are, you know so I understand what that process is. (ST04)
Q43	The financial conditions that one has also play a big role in my eyes. Otherwise I wouldn't be in Nottwil now, for example, as a [foreigner]. (ST07)

Discussion

This study aimed to explore patients’ experiences with goal setting after a newly acquired SCI/D in an ICF-based rehabilitation setting with working IPTs. The interviewees recognized the implemented structures and identified the intended goal setting process. They described many process-related factors regarding collaboration with and among the IPT. Additionally, they reflected on the influence of their personal characteristics. Patients underlined that there was no standardized best practice in goal setting and that individually tailored goal setting was important to increase motivation and engagement. Furthermore, patients reported that communication competency and a positive attitude of staff members were crucial for good goal setting practice.

Organization of structural elements and collaboration of individuals within

As described in the international classification for service organization in rehabilitation, structures (e.g. goal setting visits/ ward rounds) and services (e.g. standardized procedures) are recommended and contribute to the quality of rehabilitation.²⁴ In our study, participants perceived these structural elements, which are in line with established certification programs,²⁵ as specific for the rehabilitation management and generally found them beneficiary.

Besides structural elements, collaboration among HCPs and interaction with individuals were also found to be important for goal setting. A majority of interviewees perceived IPT-coordinated treatment as an important aspect in the quality of rehabilitation, thus corroborating findings from previous literature.²⁶ Two participants stated that treatment by different people helped them build up motivation, stressing the importance of a multi-person approach in rehabilitation. The setting at the clinic was perceived as beneficial. Therefore, we recommend that IPT's consist of all professional groups involved in the rehabilitation process and have shared leadership. They should meet regularly to discuss the process with and without patients.²⁷

Patient's characteristics as a starting point for the goal setting process

Furthermore, the interviewees reflected on their personal characteristics and the potential influence they had on their goal setting process. From a patient perspective and in the ICF model, various aspects of biopsychosocial functioning are integrated in the rehabilitation and the goal setting process.²⁸

In line with Redley et al.,⁸ we identified different participation preferences in our interviewees. While some wanted to be led through the process by the IPT, some wanted to be immediately involved in relevant decisions concerning their goal setting. If the patient's participation style is not explicitly named in rehabilitation management, frictions can occur. A different perception of a patient's participatory style by the IPT may mean that the IPT includes the patient as active and engaged although the patient would rather like to be guided. Goal setting visits are embedded in the clinical setting. This structured rehabilitation management approach serves as a basis to recognize preference style and to respond to it accordingly. This is in line with reported effects of communication training to increase patient-centeredness.²⁹ Early detection of individual preferences might help to reduce misunderstandings, save time and thus, improve the goal setting process.³⁰

Shared-control should be aimed for as in general patients are more satisfied when they feel involved in decision-making.³¹ Therefore, persons with low control preference must be encouraged to participate more in the decision-making process and individuals with active control preference need to be shown the limits of their own expertise and to be invited to participate in the collaborative process. The IPT could stimulate these developments by e.g. education about a patient's role in rehabilitation.³²

Additionally, the individual trajectory of every patient in the course of rehabilitation should be respected. The majority of participants stated that especially at the beginning of rehabilitation it was difficult to have an overview of potential goals and potential progress. Goals set solely by the IPT could be a relief in this early phase, whereas, along the way patients should be empowered and take over responsibility.^13,14 Fortunately, some patients stated that goal setting became easier over time. Therefore, HCP can adopt their rehabilitation management and leading style according to the patients’ needs during the course of rehabilitation using an open paternalism (HCP decides), informed decision (patients know what they are doing), agreement/disagreement (patients can say no), steering towards the right decision and active participation (patients choose the course of action).³³

Another aspect is knowing how to set goals. SMART is a frequently discussed goal setting technique that is also used in rehabilitation.¹⁶ Patients indicated that clear and verifiable goals are desired (specific, achievable), but sometimes vague goals were set and a time frame was too challenging. This implies that SMART strategies were not always applicable but helpful when possible.

Enabling patients through communication to take an active role

Overall patients underlined the importance of being informed and being taken seriously. Therefore, the interviewees identified communication as a central element in the goal setting process. Specific communication skills (e.g. argumentation and negotiation) can help to align the understanding of the current health status and, therefore, find personalized solutions in treatment and interventions. This increases patient's participation and self-management.³⁴ Interviewees did not comment on specific communication skills; they rather identified a specific attitude of the HCP as one of the most important aspects in goal setting. Attitudes of both HCPs and patients are determinants of communication behavior and impact success of goal setting. For example, if patients do not believe in their competence in shared-decision making or HCPs have goals in mind that do not match those of patients. It remains unclear which specific communication skills would be helpful in goal setting; most likely techniques aiming at a patient-centered communication are the most important ones.³⁵ Training HCP’s in the use of patient-centered communication is feasible also in a large-scale intervention as two recent papers have shown.^36,37

Limitations

As this is a single center study with purposive sampling of patients, a selection bias cannot be excluded. This makes representativeness and generalizability of the results questionable. Nevertheless, we included participants representing different patient groups, according to a clearly defined selection strategy. Additionally, the time point of the interviews suggests that patients had already learned a great deal concerning their rehabilitation and the integrated goal setting process in this specific setting. Interviews at the very beginning or in another setting could lead to different results. However, the time point was during post-acute inpatient rehabilitation and, therefore, at an early point in the process of adapting to SCI/D. Lastly, our results describe patient's subjective perceptions of the goal setting process and do not necessarily reflect reality. Therefore, the focus is more on perceived conceptional aspects.

Conclusion

This qualitative study described individualized feedback and showed what can be achieved in an ICF-based rehabilitation, where goal setting was interprofessional and patient-centered. Organization and collaboration among the IPTs, a patient’s personal characteristics and enabling patients through good communication proved to be relevant for patient-tailored goal setting. The HCPs should be able to identify and address the specific and individual needs over the course of rehabilitation. As a next step, the perspective of other individuals involved in a patient's initial rehabilitation process (e.g. HCP, family, etc.) as well as observation of the goal setting meeting in the clinical setting should be investigated in conjunction.

List of abbreviations

AIS	American Spinal Injury Association Impairment Scale
HCP	Health Care Professional
ICF	International Classification of Functioning Disability and Health
IPT	Interprofessional Team
SCI/D	Spinal Cord Injury/Disorder
SMART	Specific, Measurable, Achievable, Relevant, Time bound

Appendix. Interview guide.

Topic	Questions
General, introduction	You are here for initial rehabilitation after newly acquired spinal cord injury here at the SPC.
	• How do you recognize rehabilitation? What does rehabilitation mean to you and how would you explain it to your family or your neighbor?
	• How are you experiencing rehabilitation? What do you think is important or special in rehabilitation? (incl. emotional, personal, subjective)
Personal goal setting	• Now, we're talking mainly about goals and the goal setting process during your rehabilitation. What goals are you working on at the moment? Would you like to elaborate, for a quick overview?
	• How and where are goals set in your rehabilitation?• (if patient mentions goal setting visit:) Tell me about your first goal setting visit. How did you feel at the time?
	• And the patient board (printed out in the room); how do you experience that?
	• How did you experience goal setting during the rehabilitation conversation?
	• And the admission conversation?
Perception of goal setting (incl. shared decision making)	• How are you experiencing goal setting?
	• Did you get an introduction on the topic of goal setting?
	• How confident do you feel, setting your own goals?
	• How important is goal setting in your rehabilitation? Is it important to set goals?
	• How much are you involved in the process of goal setting?
	• Are you able to get involved in your own goal setting during the physician's visit or are the goals set mainly by the health professionals?
	• Do you think it's important to include your own goals?
Influencing, hindering and supporting factors for goal setting and goal achievement	• What factors influence goal setting in your point of view?
	• Who or what supports you in setting your goals?
	• What do you think would help you to set your goals even better?
	• Who or what is restraining you in setting your goals?
Closing questions	• What would you like to tell a newly admitted patient concerning the topic of goal setting?
	• Is there anything else that you would like to say concerning this topic?
Additional question (if not documented in the clinic information system)	As a concluding question, I would like to ask you about your education.
	• What schools and apprenticeships have you started or finished?

Disclaimer statements

Contributors Patricia Lampart: Conceptualization, Formal analysis, Validation, Writing – Original draft, Visualization Florin Häusler: Conceptualization, Investigation, Formal analysis, Data curation Wolf Langewitz: Conceptualization, Formal analysis, Writing – Review & Editing Sara Rubinelli: Conceptualization, Formal analysis, Supervision Diana Sigrist-Nix: Conceptualization, Formal analysis, Resources, Funding acquisition Anke Scheel-Sailer: Conceptualization, Methodology, Formal analysis, Supervision, Project administration.

Funding None.

Competing interests The authors report that there are no competing interests to declare.

Ethics approval and consent to participate The study was approved by the institutional research board and the responsible ethical committee (Ethikkommission Nordwest – und Zentralschweiz, EKNZ 2019-01842). The authors confirm all patient/personal identifiers have been removed or disguised so that the patient/person(s) described are not identifiable and cannot be identified through the details of the story.

Availability of data and material Original data is stored at the corresponding author.