Self-management decision-making in spinal cord injury after initial rehabilitation: A thematic narrative analysis

Self-management decision-making in spinal cord injury after initial rehabilitation: A thematic narrative analysis Enxhi Qama a,b,* , Nicola Diviani a,b , Clara H¨ afliger a,b , Xavier Jordan c , Anke Scheel-Sailer d,e , Claudia Zanini a,b , Sara Rubinelli a,b a Swiss Paraplegic Research, Person-centered Healthcare & Health Communication Group, Guido A. Z¨ ach Strasse 4, Nottwil 6207, Switzerland b University of Lucerne, Faculty of Health Sciences and Medicine, Alpenquai 4, Lucerne 6005, Switzerland c Department of Paraplegiology, Clinique Romande de R´ eadaptation, Sion 1950, Switzerland d Schweizer Paraplegiker-Zentrum, Guido A. Z¨ ach Strasse 4, Nottwil 6207, Switzerland e Universit¨ atsspital Bern, Bern 3010, Switzerland ARTICLE INFO Keywords: Decision-making Self-management Patient education Spinal cord injury Health behavior Qualitative research ABSTRACT Objective: This study examines how individuals with spinal cord injury (SCI) make decisions regarding their selfmanagement (SM) in the first six months after initial rehabilitation. Specifically, it explores the decision-making styles and the factors that influence their choices. Methods: We conducted semi-structured interviews with 32 individuals with SCI at threeand six-months postdischarge, resulting in 64 interviews. Data collection spanned from November 2022 to August 2024. We used thematic analysis to identify the decision-making styles and their influencing factors. Results: Our findings reveal that individuals do not rely on a single, stable decision-making style but instead adapt their ways based on the demands of a given situation. Five distinct decision-making styles emerged: 1) Delayed decision-making: postponing action until necessary, often due to emotional barriers or perceived low urgency; 2) collaborative decision-making: seeking input from healthcare professionals, family, or peers to reduce uncertainty; 3) reflexive decision-making: relying on internal cues and body feedback without pre-planning and past experience to guide SM choices; 4) impulsive decision-making: making quick, spontaneous decisions based on immediate emotions or circumstances; and 5) strategic decision-making: planning, testing, and use of external tools to optimize outcomes. Participants shifted between styles based on the context, suggesting that decision-making is not a fixed trait but a dynamic process. Conclusions: Decision-making in SCI varies across situations, influenced by personal, emotional, and external factors. Unlike traditional decision-making models, these findings highlight that individuals adapt their ways rather than relying on a single decision-making style. Practical implications: Understanding how individuals make SM decisions can help healthcare providers tailor interventions. Personalized strategies, such as behavioral activation for delayed decision-makers or decision aids for strategic thinkers, may enhance engagement, adherence, and long-term SM success. Future research should explore longitudinal shifts in decision-making styles and their impact on health outcomes. 1. Background Spinal cord injury (SCI) is a life-altering condition requiring individuals to navigate a complex and ongoing process of selfmanagement (SM) [1–3]. Self-management is broadly defined as "the ability of the individual, in conjunction with family, community, and healthcare professionals, to manage symptoms, treatments, lifestyle changes, and psychosocial, cultural, and spiritual consequences of health conditions" [4]. In SCI, SM has traditionally been framed around performing specific health tasks, such as skin checks, bowel and bladder routines, and exercises [5–10]. Although learning to perform these tasks is crucial, effective SM also requires people to incorporate them into * Corresponding author at: Swiss Paraplegic Research, Person-centered Healthcare & Health Communication Group, Guido A. Z¨ ach Strasse 4, Nottwil 6207, Switzerland. E-mail addresses: [email protected] (E. Qama), [email protected] (N. Diviani), [email protected] (C. H¨ afliger), xavier.jordan@ crr-suva.ch (X. Jordan), [email protected] (A. Scheel-Sailer), [email protected] (C. Zanini), [email protected] (S. Rubinelli). Contents lists available at ScienceDirect Patient Education and Counseling journal homepage: www.journals.elsevier.com/patient-education-and-counseling https://doi.org/10.1016/j.pec.2025.109318 Received 21 August 2025; Accepted 27 August 2025 Patient Education and Counseling 141 (2025) 109318 Available online 28 August 2025 0738-3991/© 2025 The Author(s). Published by Elsevier B.V. This is an open access article under the CC BY license ( http://creativecommons.org/licenses/by/4.0/ ). their daily lives [11–15], while also juggling emotional challenges, lifestyle changes, and social obligations such as work, family, and leisure activities [16–18]. The ability to develop and apply effective SM strategies is thus essential for long-term adaptation and overall well-being [19, 20]. Yet, this is often complicated by the unpredictability of life after discharge from inpatient care, limited access to healthcare support, and the difficulty of translating clinical recommendations into real-world situations [21–23]. Successfully navigating these challenges depends not only on the availability of resources but also on the decisions individuals make in response to evolving circumstances [24]. Many individuals with SCI face difficult trade-offs, such as prioritizing health-related tasks over meaningful activities or adapting their routines to maintain social roles [25–28]. These decisions ultimately shape how they manage complications, maintain independence, and balance health-related responsibilities with personal goals [29–32]. Decision-making is a fundamental component of SM and is explicitly recognized in established frameworks across chronic conditions [33–35]. It influences health behaviors, health engagement, and even mental health outcomes [36–38]. Studies on conditions such as heart failure and chronic pain have shown that individuals’ decision-making styles significantly influence the effectiveness of self-management, symptom recognition, and adherence to treatment recommendations [31, 32, 39]. Recognizing this, recent efforts have focused on personalized decision aids, which have been shown to reduce decisional conflict, enhance certainty, and help patients make more effective choices [40]. Despite these advancements, limited research has explored how decision-making unfolds in individuals with SCI in their daily lives [24, 41]. This gap is particularly significant during the transition from initial rehabilitation to independent living—a period marked by heightened uncertainty and increased risk of secondary complications [42–49]. Building on our previous research on approaches of SM integration in SCI after rehabilitation, this study examines how individuals with SCI make SM decisions in the first six months after initial rehabilitation. Specifically, it explores decision-making styles and factors that influence them. By capturing lived experiences, we will provide insights into how individuals make SM-related decisions, ultimately informing the development of personalized SM support interventions that enhance longterm adaptation and quality of life. 2. Methods 2.1. Study design To explore how individuals with SCI navigate SM-related decisions post-rehabilitation, we employed a qualitative approach [50–52], guided by the Standards for Reporting Qualitative Research (SRQR) (see Supplementary material). [53] RQ1: What are the common decision-making styles of individuals with SCI regarding SM during the first six months post-discharge? RQ2: What are their influencing factors? 2.2. Setting and participants This study is embedded within the Swiss Spinal Cord Injury (SwiSCI) study, a multi-center, longitudinal cohort study investigating functioning, health maintenance, and quality of life in individuals with SCI. SwiSCI includes individuals aged 16 and older living in Switzerland, excluding those with congenital diseases, neurodegenerative illnesses, or under palliative care. This study, part of SwiSCI’s Pathway 3, recruited participants from four Swiss rehabilitation clinics in the Germanand in the French-speaking part of Switzerland following inpatient rehabilitation. Comprehensive information about SwiSCI may be found elsewhere [54]. We interviewed individuals recently diagnosed with SCI three and six months post-discharge from initial inpatient rehabilitation. A research assistant informed potential participants about the study at discharge and provided a flyer as a reminder. Of the 50 participants who expressed interest, 34 provided contact details and received further explanation about the study, including their rights and obligations, from a researcher (CH) via email or phone. We made up to three contact attempts and scheduled the first interviews three months post-discharge, and the second one 6 months post-discharge. After two dropouts, 32 individuals participated in the study (see Fig. 1 for the recruitment flowchart). Recruitment continued until we achieved maximum variation in injury types (complete/incomplete) and levels of paraplegia/ tetraplegia, as well as thematic saturation from the last five analyzed interviews (see Table 1 for participant details). 2.3. Data collection We conducted 64 semi-structured interviews between November 2022 and August 2024. Each of the 32 participants was interviewed twice: at 3 months and 6 months post-discharge. These timepoints were chosen to capture SM experiences during early community reintegration [47]. While the 6-month interview served as the primary lens for understanding ongoing SM demands, the earlier interview helped reduce retrospective bias and improve recall of recent decisions, particularly those involving discrete or routinized actions [55]. The dual interviews also captured emerging SM challenges between timepoints (e.g. returning to work, managing new symptoms, or adjustments), enhancing both recall accuracy and the contextual depth of the data collected. The interview guide was based on the COM-B behavior model [56–58] which emphasizes how capability, opportunity, and motivation shape behavior [59]. This framework aligns with SM in SCI, where tasks like bladder or bowel management require practical skills (capability), access to resources (opportunity), and sustained engagement (motivation) [60, 61]. We also drew on research addressing SM across daily life contexts, including work, leisure, and social roles [14, 62, 63]. In the first interview, we explored participants’ general SM views, experiences during and after rehabilitation, and SM-related decisions within their daily environments. We used probes to examine their decision-making styles (see Table 2 for guides). In the second interview, we revisited decisions from the first round, asking whether and how they had been reassessed. We also explored new SM decisions that had emerged since. This approach broadened the range of situations Fig. 1. Participants’ recruitment flowchart. E. Qama et al. Patient Education and Counseling 141 (2025) 109318 2 captured and revealed how participants applied different decisionmaking styles across both stable and changing circumstances. Trained researchers (CH, CZ), independent of participants’ care, conducted the interviews in the participants’ native language to foster trust. We pilot-tested the guide to ensure clarity. Interviews took place in person, via phone, or Zoom [64, 65], lasting 21–82 min, and were audio recorded and transcribed. We stored audio recordings in a secure internal folder and took field notes during each session. A researcher (EQ) also wrote reflective summaries to support analysis. 2.4. Data analysis We conducted an inductive thematic narrative analysis to describe how individuals approach decision-making in SM [66, 67]. All 64 interviews were analyzed as independent narratives. The two interviews per participant were treated as a combined data source to broaden the range of decision-making situations, rather than to track longitudinal change. Each decision-making episode was examined on its own terms, focusing on the decision made, influencing factors, and how the situation was navigated. Since participants often recalled events without clear timeframes, we avoided coding by timepoint to prevent unfounded assumptions about temporal progression. Shifts in the second interview were interpreted as situational changes (e.g., return to work, new symptoms), not developmental trajectories. We began by familiarizing ourselves with the data, repeatedly listening to recordings and reading transcripts. One researcher (EQ) conducted initial coding using MAXQDA software, applying broad, descriptive codes (open coding) [67]. We focused on identifying moments where participants described difficulties, dilemmas, or doubts in addressing SM challenges in their daily environments. Our analysis centered on three key aspects: 1) perception and interpretation of challenges (how individuals become aware of and recognize SM challenges, including what they notice, how they frame them (e.g., minimizing or normalizing); 2) decision-making style and its characteristics (how individuals act or avoid acting on challenges); 3) factors influencing decision-making (including emotional framing, personal thresholds, and perceived urgency and manageability that shape their decisions). These aspects emerged during open coding and subsequently guided how we identified, selected, and compared decision-making episodes throughout the dataset. EQ and ND then refined and organized the codes through axial coding, identifying meaningful segments related to SM-related decisions (see Fig. 2 for an illustration of code and theme development). To ensure rigor, we cross-referenced these codes with participants’ narratives, reflective summaries and field notes to contextualize the data and validate our interpretations. Finally, EQ, ND, and CH collaboratively built the themes, intertwining the data with their analytical expertise to achieve a nuanced understanding [51, 66, 68]. Trustworthiness was supported through multiple strategies, including double interviews, field notes, reflective summaries, and peer feedback at academic seminars and conferences [69, 70]. 3. Results We identified five distinct decision-making styles used by individuals to navigate SM decisions in the first six months post-discharge: 1) delayed, 2) collaborative, 3) reflexive, 4) impulsive, and 5) strategic. These styles appeared across both interview timepoints, though not always within the same participant, indicating they are not tied to a specific phase but reflect context-sensitive reasoning. Their enactment was shaped by various influencing factors, emotional, social, cognitive, and behavioral (see Tables 3 and 4). Below, we provide narrative descriptions of each style, supported by illustrative quotes (Table 3). 3.1. Decision-making styles 3.1.1. "I can do it next week" – delayed decision-making Participants’ accounts suggest a reactive and avoidant decisionmaking style, where individuals postpone addressing SM-related challenges until external circumstances force a response. In their narratives, Table 1 Socio-demographic of participants (N =32). Characteristic n (%) Age  Range Median 19–78 49 Sex  Female Male 4 (12.5 %) 28 (87.5 %) SCI level  Paraplegia Tetraplegia 17 (53 %) 15 (47 %) Severity of injury  Complete Incomplete 8 (25 %) 24 (75 %) Table 2 Sample questions for the semi-structured interviews. Topic Sample questions first round (3 months post discharge) Sample questions second round (6 months post discharge) Introduction and warm-up •Are there any activities for SM and prevention of complications of your SCI that you perform regularly? If yes – can you name them? •Do you feel that you are keeping up well with these requirements? Why (not)? •How much would you say does SM interfere with your life? Why? How? •Thinking back to your last interview, we talked about different SM tasks you perform [naming the tasks]. Today we will discuss them again and also any other new issues encountered in the last three months. What do you think about those issues now? Has anything changed? How? Return to the community, and integration of SM Now think back to when you first went back to the community (home, etc.) •How was the implementation at home of the routines and SM regimes? •Can you describe a situation regarding SM that was difficult for you to manage? Why? What made it difficult for you to? •Have you made any compromises so far, because of SM activities you have to perform? Were there any situations when you had to decide either to engage in SM or to do other activities? •Did you find a way to integrate these SM activities to your lifestyle? What did you do to take control? How? What did you need? •Thinking back to [a specific task or issue]. Are you still doing the same thing? [reminding the solution] or Have you find a solution yet? How? What helped you? Why? •Looking back from our last interview, has anything changed in terms of the support [naming the support] you have received? Do you still need it the same way? How? Why? •Has there been any new situation when you have experienced challenges in integrating different SM task, with other responsibilities, or leisure activities, or work? Can you tell me more about it? What did you do to take control? How? What did you need? Personal considerations •Is there anything else that is particular to your situation that helps you to better self-manage your condition? •Is there anything else that is particular to your situation that helps you to better self-manage your condition? SCI – Spinal cord injury SM – Self-management E. Qama et al. Patient Education and Counseling 141 (2025) 109318 3 participants described instances where decisions were delayed due to perceived urgency, emotional barriers, or a preference for maintaining a sense of normalcy. For example, some participants mentioned recognizing a health concern but choosing not to act on it immediately. One participant recalled noticing chronic diarrhea but not mentioning it during medical appointments, downplaying its significance despite its daily impact (Q1). Another described enduring heel pain for an extended period, only addressing it once it became intolerable (Q2). These accounts suggest that some individuals may have developed a tendency to tolerate discomfort or defer action until symptoms became too severe to ignore. Beyond physical health, similar patterns were evident in other areas of life. Some participants spoke about avoiding activities they perceived as risky, such as long-distance travel or extended social outings, describing a reluctance to engage in situations that might disrupt their sense of stability (Q4). Others mentioned delaying everyday responsibilities, such as household chores, with the idea that they would eventually get to them, reinforcing an inclination to push back nonurgent decisions (Q5). These accounts highlight how some participants approached decision-making in a reactive manner, navigating SM-related choices in a way that allowed them to postpone dealing with challenges. While this approach seemed to provide short-term relief from decision-making pressure, it often meant that actions were only taken once circumstances demanded it. 3.1.2. "I don’t decide on my own" – collaborative decision-making Some participants described a preference for making SM-related decisions in collaboration with others, actively seeking input from healthcare professionals, family members, or peers before committing to a course of action. Their narratives suggest that this approach was shaped by factors such as trust in external expertise, the complexity of the decision, social support, and the need for reassurance. For example, one participant explained how they incorporated exercises into their routine only after a physiotherapist recommended them, suggesting that professional input played a key role in shaping their choices (Q1). Others described engaging in joint decision-making with doctors, discussing treatment options together before moving forward (Q2). One participant explicitly stated, "I discuss alternatives to medications with the doctor… I don’t decide on my own," reinforcing the idea that some individuals feel more confident in their choices when decisions are shared with a trusted professional (Q4). This style of decision-making extended beyond interactions with healthcare providers. Some participants described turning to family members or peers for support, consulting spouses, siblings, or friends when faced with health-related dilemmas (Q5, Q6). In certain cases, community organizations and peer networks appeared to serve as additional sources of guidance, providing individuals with a space to exchange experiences and gather insights from others who had navigated similar challenges (Q8, Q9). These narratives suggest that for some individuals, decision-making was not a solitary process but rather an interactive and informed one, shaped by external validation and shared knowledge. While this approach appeared to reduce uncertainty and provide reassurance, it also reflected a tendency to rely on others rather than making independent decisions. 3.1.3. "I felt like I didn’t need it anymore" – reflexive decision-making Some participants’ descriptions revealed a decision-making style guided primarily by internal cues, bodily feedback, and intuitive adaptation without structured pre-planning. This reflexive style was grounded in heightened self-awareness, personal experience, and a growing sense of confidence in recognizing what worked for one’s body and circumstances. For instance, one participant recalled noticing an increase in stiffness whenever they skipped exercises for a few days, prompting them to resume their routine without external reminder or planning (Q3). Others spoke about gradually reducing reliance on external advice, as they developed a stronger sense of what worked best for them (Q10). This style also involved day-to-day flexibility and embodied responsiveness. Participants spoke about noticing early signs of fatigue or discomfort and modifying their activities accordingly, for example, accepting the need to rest more on demanding days (Q12), or adapting the pace of work to conserve energy (Q15). These narratives suggested a form of decision-making that was responsive rather than anticipatory, with actions unfolding based on lived experience rather than external frameworks. While reflexive decision-making fostered autonomy and allowed participants to adapt dynamically to fluctuating conditions, it also meant that decisions were made informally—without explicit planning, Fig. 2. Illustration of code and theme development. E. Qama et al. Patient Education and Counseling 141 (2025) 109318 4 Table 3 Themes and contributing quotes for decision-making styles. "I can do it next week" Delayed decision-making −Q1 - "I didn’t bring up the diarrhea during my last check-up, even though it was still an issue." (P16) −Q2 - "I waited until the heel pain became uncomfortable before seeking a solution." (P13) −Q3 - "I could have discussed certain psychological concerns earlier, but I got caught up in routines." (P12) −Q4 - "Traveling by plane or participating in extensive leisure activities feels overwhelming, so I avoid it." (P14) −Q5 - "Shopping or cleaning is cumbersome, and I only do it when absolutely necessary." (P14) −Q6 - "I tend to postpone things (daily tasks), thinking, ‘I can do it next week.’" (P7) −Q7 - "I postponed dealing with mobility issues until I realized it was necessary to adjust my routine." (P13) "I simply trust my doctor" Collaborative decisionmaking −Q1 - "Physiotherapists suggested new exercises, and I integrated them into my program." (P31) −Q2 - "We discussed medication options with my doctor and tried Imodium for bowel management." (P16) −Q3 - "I discuss alternatives to medications with the doctor; I don’t decide on my own." (P2) −Q4 - "I don’t Google or read medication instructions; I simply trust my doctors." (P15) −Q5 - "My brother’s experience and knowledge have been immensely helpful." (P10) −Q6 - "First, I ask my wife if she knows something, and then we formulate questions together." (P11) −Q7 - "I’m still in contact with peer and other colleagues, which helps me stay motivated…. [Home care service] helps me in the morning and evening. They just help me undress and put on pajamas." (P17) −Q8 - "I rely on community resources, like the [paraplegic association], for information and advice." (P14) −Q9 - "What I find helpful is the group we formed during rehab." (P30) −Q10 - "I consulted the pain doctor to distinguish between neuropathic pain and strain-related pain." (P13) "I felt like I didn’t need it anymore" Reflexive decisionmaking −Q1 - "If I can’t manage the garden, I let the weeds grow a bit more." (P27) −Q2 - "Cooking and contributing at home help me feel less dependent on my partner." (P15) −Q3 - "I notice stiffness immediately if I skip exercises for a few days." (P25) −Q4 - "If [Home care service] comes early, I catheterize earlier. I’m flexible with the timing now." (P16) −Q5 - "I tapered off Pregabalin to see if the nerve sensations improved without medication." (P5) −Q6 - "I decided to reduce pregabalin gradually without much consultation." (P4) −Q8 - "Fatigue is constant, but I’ve accepted that the body operates at its limits." (P1) −Q9 - "I paused fitness training in summer but kept exercises for muscle movement." (P25) −Q10 - "I’ve developed a sense of what works best, reducing the need for external support." (P24) −Q12 - "I accept that I may need to do less on busy days and focus on recovery when necessary." (P19) −Q13 - "I notice earlier now when I’m not feeling well…I’ve made progress in being more aware of my body and how it functions." (P20) −Q14 - "I observe it very closely and know what signs to look for, like bladder infections." (P4) −Q15 - "I now know I need to stop early when working in the office to conserve energy for the evening." (BP7) Table 3 (continued) −Q16 - "Accepting compromises, like catheterizing during events, helps me maintain good health." (P14) "I don’t need to overthink… I just go for it" Impulsive decisionmaking −Q1 - "I canceled MTT twice to do something social." (P30) −Q2 - "I catheterize less frequently when I’m out driving. (P28) −Q3 - "Spending time with friends is more rewarding than therapy." (P28) −Q4- "During Easter, I realized it was becoming too much, so I took two days off to recover energy" (P25) −Q5 - "Sometimes, I prioritize other plans over fitness training if something comes up." (P16) −Q6 - "I chose to focus on outings and daily life during my two-week break instead of rigid exercises." (P5) −Q7 - "I packed everything myself and managed it during the trip." (P10) −Q8 - "I don’t need to overthink whether something will work—I can just go for it. I need to plan less. I can do more things spontaneously without overthinking whether something will work or not. I even did an escape room with some friends recently. It was super spontaneous, and we went out afterward for a drink and got home late. That’s something I wouldn’t have been able to do before" (P18) −Q9 - "Cooking fresh meals and doing chores are like therapy for me." (P12) "I test options in advance" Strategic decision-making −Q1 - "I tested several catheter products… chose the one that is the fastest, most practical, and cleanest." (P28) −Q2 - "I started trying to reduce the 300 mg Pregabalin… I already tried going down to 250 mg per day for a week, and it seemed okay." (P16) −Q3 - "I restructured my sleep… aligned the entire catheterization routine with that time." (P16) −Q4 - "I organize my medications weekly because doing it daily is too time-consuming." (P29) −Q5 - "I refined my home program with photos and app-based guidance." (P31) −Q6 - "I structured my day to include sitting for an hour or two to alleviate heel pain." (P13) −Q7 - "I’ve set Mondays and Thursdays for physical therapy, Tuesdays for construction matters, and Wednesdays for my grandchildren." (P10) −Q8 - "I prepare medications in advance using boxes with compartments and a reminder app." (P12) −Q9 - "The hotel says it’s wheelchair accessible, but it’s not really. Now we check with travel agencies and ask for pictures of rooms." (P21) −Q10 - "I test accessibility options before traveling, using SBB apps and customer service for guidance." (P3) −Q11 - "I check my skin morning and evening and sometimes during the day, depending on my activity." (P14) −Q12 - "I bring the discharge report and medication list from [name of hospital and rehabilitation center] to appointments for continuity of care." (P14) −"I opted for 2x physiotherapy per week instead of negotiating for 3x to manage my time better." (P5) −Q13 - "For my pain, I’ve used ChatGPT to summarize books and get information quickly" (P20) −Q14 - "I postponed catheterization over time to sleep longer, then did bowel management in the afternoon." (P21) −Q15 - "I decided to adapt my therapy to include pool exercises for when I’m in [name of another country]." (P11) E. Qama et al. Patient Education and Counseling 141 (2025) 109318 5 external consultation, or the use of structured tools or routines. Nonetheless, it reflects a highly personalized mode of engagement with selfmanagement, rooted in bodily learning and intuitive adjustment. While this approach appeared to foster greater autonomy and adaptability, it also meant that decisions were often made without structured deliberation or systematic planning. 3.1.4. "I don’t need to overthink…I just go for it" – impulsive decisionmaking Several participants described a spontaneous, in-the-moment approach to decision-making, where choices were made quickly, based on immediate emotions, external circumstances, or opportunities as they arose. Their narratives suggest that this approach was driven by a desire for spontaneity and a belief in their ability to handle challenges as they came up. For instance, some individuals described prioritizing social interactions or enjoyable activities over structured health routines, making decisions based on what felt right in the moment. One participant recalled skipping medical therapy to spend time with friends, highlighting a preference for immediate emotional rewards over structured planning (Q1). Another described catheterizing less frequently when out driving, making on-the-spot adjustments rather than adhering to a fixed routine (Q2). This style of decision-making appeared to emphasize living fully and embracing flexibility, even if it meant occasionally deviating from structured SM routines. One participant described taking a break from physiotherapy during a vacation, explaining that they wanted to enjoy their time away without focusing too much on health-related tasks (Q6). Others recalled engaging in spontaneous activities—such as joining an escape room challenge—demonstrating a willingness to step outside their usual routines for the sake of an enriching experience (Q8). While this approach appeared to provide a sense of freedom and enjoyment, it also introduced the risk of inconsistent health behaviors, as decisions were often shaped by immediate desires rather than longterm planning. 3.1.5. "I test options in advance" – strategic decision-making Some participants described a methodical and structured approach to decision-making, where they actively planned, tested, and refined their choices to optimize their SM routines. This approach appeared to reflect a desire for control, a problem-solving orientation, and the use of external tools, routines, or organizational strategies to improve outcomes and reduce uncertainty. For example, some participants spoke about experimenting with different SM strategies to determine the most effective approach. One individual described testing several catheter products to identify the best option, demonstrating a willingness to engage in systematic trial and error (Q1), or tapering medication doses while monitoring their body’s response over time (Q2). Others developed structured weekly plans (e.g., assigning fixed days to therapy or caregiving tasks) or reconfigured their daily schedules to align health routines with other obligations (Q3, Q7, Q11, Q14, Q15). This style also involved the intentional use of tools, schedules, and advance planning. Some participants described aligning their sleep with catheterization times or organizing medications using compartments and reminders to ensure adherence (Q3, Q4, Q8). One participant refined their home exercise program using photos and app-based guidance (Q5), illustrating a planned and externally supported method of optimizing care rather than simply reacting to physical sensations. Others pre-tested accessibility options before travel, contacted customer services, or relied on written documents to coordinate appointments and follow-up care (Q10, Q12). These narratives suggest that some participants approached SM as a problem to be systematically solved, emphasizing planning and preparation to minimize uncertainty and optimize outcomes. 3.2. Integrative analysis of the decision-making styles 3.2.1. Context-dependent nature of decision-making styles Our findings suggest that decision-making styles are not fixed but shift depending on the situation, with individuals appearing to adapt their approach based on the nature of the SM task, their physical and emotional state, and external influences (see Table 3). Rather than consistently relying on a single style, participants described adjusting their decision-making strategies in response to different challenges. The use of two interviews per participant allowed us to observe a wider range of such challenges, as participants reflected on new or evolving situations across both timepoints. For example, P16 postponed Table 4 Conceptualization of decision-making styles. Interpretation of challenges Decision-making style Challenges are interpreted as nonurgent or manageable later Delayed decision-making Participants postpone decisions until circumstances force a response Influencing factors/drivers •Perceived urgency •Emotional barriers •Desire for normalcy Possible outcomes •Short-term comfort Characteristics •Reactive •Avoidant Challenges are interpreted as problems requiring collaboration with professionals, family, or peers Collaborative decision-making Seeking input, sharing decision-making responsibilities, and deferring to trusted sources. Influencing factors/drivers •Trust in external expertise •Complexity of challenges •Social support •Need for confirmation Possible outcomes •Reduced uncertainty Characteristics •Proactive •Rational Changes are interpreted as signals to adjust routines, reduce reliance on external support, or experiment with new strategies Reflexive decision-making Decisions guided by internal cues, bodily feedback, and intuitive adaptation without structured pre-planning. Influencing factors/drivers •High selfawareness •Personal experience •Acceptance of limitations Possible outcomes •Immediate needs are met •Long-term well-being Characteristics •Reactive •Intuitive Challenges are interpreted as opportunities to pursue valuable experience, even if they deviate from planned routines Impulsive decision-making Quick, spontaneous decisions with little or no consideration of consequences. Participants act on urges or emotions in the moment. Influencing factors/drivers •Desire for spontaneity •Confidence in their adaptability Possible outcomes •Short-term relief (instant gratification) •Satisfaction Characteristics •Reactive •Intuitive Challenges are interpreted as problems that require careful planning, testing, and refinement to address effectively Strategic decision-making Structured routines, deliberate testing, external tools, and goal-oriented planning. Influencing factors/drivers •Desire for control •Problemsolving mindset •Use of tools and resources Possible outcomes •Minimized risk •Long-term control Characteristics •Proactive •Rational E. Qama et al. Patient Education and Counseling 141 (2025) 109318 6 discussing health concerns (delayed decision-making) but sought professional advice on medications (collaborative decision-making) and later adjusted dosages independently (strategic decision-making). Similarly, P14 combined peer support (collaborative decision-making) with structured monitoring routines (strategic decision-making), while P5 self-adjusted medication (reflexive decision-making), prioritized social life over structured exercise (impulsive decision-making), and optimized physiotherapy for time management (strategic decisionmaking). Certain contexts seemed to encourage particular styles. Strategic decision-making was more common in structured health tasks, collaborative decision-making emerged when seeking expert input, and reflexive decision-making appeared in adapting daily routines. Impulsive decision-making was often linked to social or leisure activities, while delayed decision-making seemed to occurred when individuals perceived tasks as low-priority or overwhelming. 3.2.2. Contrasting and similar characteristics of decision-making styles Although each style reflects a distinct approach to SM-related decisions, participants’ accounts indicate that some styles share common features. Delayed and impulsive decision-making were both reactive yet seemed to differ in their motivations—avoidance vs. emotional spontaneity. In contrast, collaborative and strategic decision-making were proactive, but varied in reliance on external input vs. self-directed planning. These styles also appeared to align along a spectrum rather than as rigid categories. At one end, delayed decision-making was described as prioritizing short-term comfort over long-term consequences, contrasting with strategic decision-making, which seemed to thrive on control and efficiency. Collaborative decision-making, in the middle, balanced external reassurance with informed action, overlapping with strategic decision-making in its goal-oriented approach. On the instinctive side, reflexive decision-making seemed to be guided by bodily awareness and experience, whereas impulsive decision-making was driven by emotional impulses and immediate opportunities. Finally, impulsive and strategic decision-making stood at opposite extremes—one prioritizing spontaneity, the other deliberate planning. 4. Discussion This study identified five distinct decision-making styles individuals with SCI used to navigate SM challenges in the first six months postdischarge: delayed, collaborative, reflexive, impulsive, and strategic. These styles do not appear to be fixed cognitive dispositions but rather fluid strategies shaped by contextual, personal, and social influences. In contrast to prior models that classify individuals as having stable cognitive styles (e.g., rational vs. intuitive, dependent vs. independent) [29, 32, 71, 72], our findings support a dynamic, situational view of decision-making. Participants often shifted between styles based on urgency, emotional readiness, trust in expertise, or the complexity of a given challenge. This aligns with naturalistic decision-making theories, which emphasize that real-world decisions are shaped by constraints, time pressures, and evolving circumstances [73, 74]. For instance, the same individual might postpone health-related action in one context (delayed) yet display a structured, problem-solving approach in another (strategic). Similar shifts have been observed in other chronic conditions, including HIV/AIDS, MS, and chronic pain, where decision strategies fluctuate with external demands and resource availability [31, 75, 76]. In SCI, however, bodily cues (e.g., reflexive style) and physical limitations play a heightened role, necessitating ongoing adaptation. Our findings resonate with the SCI Adjustment Model (SCIAM), which conceptualizes adjustment as a dynamic process shaped by cognitive, emotional, and contextual feedback loops [20]. The use of different styles across situations reflects this fluid process—less a developmental trajectory than a system of adaptive responses modulated by perceived demands, internal states, and environmental resources. These findings refine existing decision-making models by highlighting previously underexplored dimensions [37]. Collaborative decision-making, often viewed as dependency, emerged as a proactive strategy to reduce uncertainty and build confidence. Reflexive decision-making, while rooted in intuitive reasoning, involved deliberate bodily awareness and experiential learning—more than mere instinct. Importantly, no style was inherently superior; their value depended on situational fit. While avoidant patterns (e.g., delayed) have been associated with poorer outcomes [29, 77], our findings suggest that individuals often compensate with more active styles in other domains, balancing short-term avoidance with longer-term planning. Given this flexibility, interventions should not attempt to override individuals’ natural tendencies but rather enhance decision-making processes within each style. For instance, behavioral activation techniques (e.g., goal setting, reminders) could help those prone to delayed decisions address issues before complications arise [78–82]. Those favoring collaborative decision-making may benefit from structured education to maintain a balance between seeking support and developing autonomy [83–86]. Reflexive decision-makers might be guided through periodic feedback to ensure bodily cues are interpreted appropriately [8, 72, 87–90]. Strategic decision-makers, though typically well-informed, may risk decision fatigue; digital aids or conversational agents could help mitigate overload [91−93]. A key strength of this study lies in its qualitative depth: by conducting two interviews per participant, we captured a wide range of decisions across varied life domains. The diversity of the sample, in SCI severity, age, sex, and SM approach, also enabled us to identify nuanced decision-making patterns not typically visible in quantitative work. Rather than interpreting shifts across interviews as developmental changes, we viewed them as context-specific adaptations. Some limitations must be acknowledged. Participants reported on past decisions, which may have introduced recall bias—especially for impulsive actions not consciously reflected on at the time. The classification of styles involved interpretive judgment, and distinctions between them were sometimes blurred. Still, this analytic ambiguity reflects the reality of SM: decisions are rarely clear-cut, and styles often co-exist or evolve. Our typology should thus be seen as a conceptual scaffold, not a rigid taxonomy. Future research should deepen and expand these insights. First, realtime assessments could provide a more granular understanding of decision processes [94]. Second, longitudinal studies might clarify how style transitions relate to health outcomes, well-being, or risk management. Third, exploring how decision styles vary across SM tasks, based on urgency, stakes, complexity, or time pressure, could further illuminate their adaptive value [38, 77]. Finally, although this study did not examine associations between demographic characteristics and decision-making styles, future research could explore whether age, gender, or other factors influence the adoption or transition between styles across time. For instance, while our male-dominant sample reflects epidemiological trends in SCI [95], gendered differences in decision-making remain an open question, particularly given how societal roles may shape responsibility and autonomy in health management. 5. Conclusions This study explored how individuals with SCI approach decisionmaking in the first six months post-rehabilitation, identifying five distinct styles. Rather than relying on a single, stable decision-making pattern, participants appeared to adapt their approaches based on personal, emotional, and contextual factors. By framing decision-making as fluid and context-dependent rather than a fixed cognitive trait, our findings provide a more nuanced perspective on how individuals manage their health and daily lives. Each decision-making style presents strengths and limitations, underscoring the importance of personalized interventions aligning with individual preferences and challenges. E. Qama et al. Patient Education and Counseling 141 (2025) 109318 7 Future research should continue to explore how decision-making styles evolve over time, particularly in relation to long-term adherence, quality of life, and mental health outcomes. CRediT authorship contribution statement Claudia Zanini: Formal analysis, Investigation, Project administration, Writing – review & editing. Sara Rubinelli: Conceptualization, Funding acquisition, Investigation, Methodology, Validation, Writing – review & editing. Xavier Jordan: Writing – review & editing. Anke Scheel-Sailer: Writing – review & editing. Enxhi Qama: Data curation, Formal analysis, Investigation, Methodology, Project administration, Writing – original draft, Writing – review & editing. Clara H¨ afliger: Formal analysis, Investigation, Project administration, Writing – review & editing. Nicola Diviani: Conceptualization, Data curation, Formal analysis, Funding acquisition, Investigation, Methodology, Project administration, Supervision, Validation, Writing – review & editing. Ethics approval and consent to participate The study obtained ethical approval from the regional committee (ref. EKNZ 2022–00501). Additionally, SwiSCI adheres to national and international research standards, including the Declaration of Helsinki by the World Medical Association (World Medical Association 2008), the "International Ethical Guidelines for Epidemiological Studies 2009" by the Council for International Organizations of Medical Sciences (Council for International Organizations of Medical Sciences 2009), and national guidelines for research integrity (Akademien der Wissenschaften Schweiz 2013). Funding This work was supported by the Swiss National Science Foundation (www.snf.ch; Grant No. 10001C_200520). The funding source had no role in the study’s conceptualization, decision to publish, or preparation of the manuscript. Declaration of Competing Interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Nicola Diviani reports financial support was provided by Swiss National Science Foundation. Sara Rubinelli reports financial support was provided by Swiss National Science Foundation. Given her role as Associate Editor in the Editorial Board of Patient Education and Counseling, Sara Rubinelli had no involvement in the peer review of this article and had no access to information regarding its peer review. Full responsibility for the editorial process for this article was delegated to another journal editor. If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper. 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