Approaches to self-management integration and influencing factors in everyday life after spinal cord injury: A qualitative narrative analysis

Approaches to self-management integration and influencing factors in everyday life after spinal cord injury: A qualitative narrative analysis Enxhi Qama a,b,1 , Nicola Diviani a,b,* , Clara H¨ afliger a,b , Xavier Jordan c , Anke Scheel-Sailer a,d,e , Claudia Zanini a,b , Sara Rubinelli a,b a Swiss Paraplegic Research, Guido A. Z¨ ach Strasse 4, Nottwil 6207, Switzerland b Faculty of Health Sciences and Medicine, University of Lucerne, Alpenquai 4, Luzern 6005, Switzerland c Department of Paraplegiology, Clinique Romande de R´ eadaptation, Av. du Grand-Champsec 90, Sion 1950, Switzerland d Schweizer Paraplegiker-Zentrum, Guido A. Z¨ ach Strasse 1, Nottwil 6207, Switzerland e Universit¨ atsspital Bern, Freiburgstrasse 20, Bern 3010, Switzerland ARTICLE INFO Keywords: Self-management Chronic conditions Self-care Spinal cord injury Patient education Health literacy Health communication ABSTRACT Objective: This study explores how individuals with spinal cord injury (SCI) integrate self-management (SM) into their everyday lives post-discharge from initial rehabilitation. It focuses on identifying the approaches they employ in balancing health tasks with personal and societal roles and the influencing factors. Methods: We conducted semi-structured interviews with 32 participants, recruited from four rehabilitation centers across Switzerland, three months post-rehabilitation. Data collection spanned from November 2022 to May 2024. We used thematic analysis to identify the challenges and strategies associated with SM integration. Results: Three factors were found to influence SM integration: mind and body dynamics, encompassing physical and emotional aspects; environmental and informational dynamics, including external support, accessible facilities, and availability of information; and society and perception dynamics, including social stigma and misconceptions. These factors shaped the different approaches individuals adopted to integrate SM: The compartmentalizing approach, where individuals focused on one aspect at a time; The mixing approach, where both health and other tasks were prioritized but adjusted; and The embedding approach, where there was equal prioritization with no adjustment on either side. Conclusions: This study contributes to a more nuanced understanding of how to balance both medical and role management in SCI post-discharge. Self-management integration is achieved through different approaches and influenced by a wide range of factors, internal and external ones. Further research should longitudinally explore whether the approach one individual employs changes with the time and what aspects reinforce one or the other. Practical implications: Our findings highlight the need for flexible, personalized SM interventions that are contextually grounded but also adaptive and resilient. Rehabilitation settings should assess different SM integration approaches, using feedback to guide individuals in refining their strategies. Communication guidelines and tailored education sessions are recommended to help align SM practices with patients’ evolving goals, including family, social, and leisure priorities. 1. Introduction Spinal cord injury (SCI) affects between 250,000 and 500,000 people worldwide each year, impacting physical health, emotional well-being, social engagement, and personal relationships [1]. Effective self-management (SM) is essential for sustaining health and quality of life in complex chronic conditions like SCI [2,3]. Self-management is 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]. Self-management interventions for SCI typically address medical * Correspondence to: Swiss Paraplegic Research, Person-Centered Healthcare & Health Communication Group, Guido A. Z¨ ach Strasse 4, Nottwi 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). 1 ORCID: https://orcid.org/0000-0002-9466-3379. 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.2025.108763 Received 12 November 2024; Received in revised form 17 February 2025; Accepted 20 March 2025 Patient Education and Counseling 136 (2025) 108763 Available online 28 March 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/ ). practices such as catheterization, bowel care [5,6], skin checks [7,8], mobility, physical activity [9,10], and medication management [11,12]. These interventions have demonstrated benefits in reducing pressure ulcers [9], urinary infections [10], as well as improving self-efficacy [11] and functional independence [12]. Despite these benefits, two key limitations remain. First, most SM programs are designed for individuals who have been living with SCI for years and are primarily implemented in community settings [13]. In contrast, fewer interventions specifically target the critical transition from rehabilitation to community life [14], market by a high prevalence of secondary complications and rehospitalization [15–20]. In this period individuals experience fatigue, dependency on others, and mismatches between rehabilitation training and real-life demands [21]. For instance, many face barriers to social reintegration and structural limitations that further impact their ability to sustain effective SM practices [22–24]. An influence in this difficulty is the shift from a structured, supervised rehabilitation environment—where healthcare professionals guide SM routines—to an independent, self-directed environment post-discharge [23,24]. In rehabilitation, individuals receive continuous support, ensuring that SM tasks are monitored and reinforced [25,26]. However, post-discharge life requires them to implement these practices independently, often without immediate access to professional guidance and with fewer resources to address unexpected challenges [22,25,26]. Second, many interventions focus primarily on the medical aspects, overlooking the evidence that SM extends beyond symptom management [27,28] and is intertwined with individuals’ life contexts. Managing a chronic condition like SCI does not occur in isolation; rather, it requires individuals to integrate health tasks into their daily routines, balancing them alongside personal, social, and professional responsibilities—challenges that may not have been fully addressed during rehabilitation [30,31]. Successful SM depends on the ability to navigate competing demands, such as family responsibilities, social participation, and employment, which continue to evolve over time [6,7,29–35]. When this balance results in failure, research indicates that it can lead to two major challenges. First, poor adherence and low sustainability of health management practices can lead to health long-term health complications and diminished well-being [36–39]. Second, dissatisfaction and low participation in leisure activities, domestic life, and relationships, can persist even years after community reintegration, negatively affecting quality of life [24,33,34]. Therefore, it is particularly important to understand the transition period from rehabilitation to everyday life [14], the role it plays in building the skills people need to start managing their disability [17–19,40], and how they apply and adapt the SM information they receive [41–43]. Consider the management of pressure relief [44] or the execution of catheterization procedures during travel [31]. These gaps highlight the need for interventions that explicitly support this transition, ensuring that individuals are not only informed about SM practices but also equipped to integrate them effectively into their everyday lives [45]. To address these gaps, this study aims to explore how individuals with SCI integrate SM into their lives after discharge from initial rehabilitation. Specifically, it focuses on the approaches to SM integration they follow and the influencing factors. Understanding these aspects could inform the development of targeted SM interventions that consider the lived experiences of individuals. Ultimately, this will help improve the long-term sustainability of SM for those affected by SCI. 2. Methodology 2.1. Study design We chose a qualitative approach in order to have a deep understanding of how individuals experience the phenomenon of SM [46,47]. Specifically, we applied an experiential orientation since we want to understand the lived experiences and personal meaning-making of SM [48]. This study addresses two research questions: RQ1. What factors influence the integration of SM practices into individuals’ everyday lives following discharge from initial rehabilitation? RQ2. What approaches do individuals follow in integrating SM practices into their everyday lives? We used the Standards of Reporting Qualitative Research (SRQR) checklist to report our study [49] (see Appendix A). 2.2. Setting and participants This study was conducted within the Swiss Spinal Cord Injury study (SwiSCI), a multi-center, longitudinal cohort study that examines functioning, health maintenance, and quality of life in individuals with SCI from rehabilitation to community life. SwiSCI includes individuals aged 16 or older with traumatic or non-traumatic SCI, excluding congenital conditions, neurodegenerative disorders, or new SCI in palliative care. This study is embedded in Pathway 3, which follows individuals with newly acquired SCI. Further details on SwiSCI are available elsewhere [50]. We recruited participants from four Swiss rehabilitation centers in Switzerland after completing their rehabilitation program under an interprofessional team. We interviewed individuals recently diagnosed with a SCI three months after discharge. A Swiss research assistant introduced the study at discharge and provided a flyer. The participants (n =50) who expressed interest provided their contact details (email address or phone number), and within a month, a researcher (CH) contacted them via email or phone to provide a detailed explanation of the study, including their rights and obligations. We stopped further outreach if the first three contact attempts proved unsuccessful. We scheduled interviews three months post-discharge and obtained informed consent from participants (n =32) who maintained interest (see Fig. 1 for the recruitment flowchart). We continued with recruitment until there was the most variety in the types of injuries (complete/incomplete) and levels of paraplegia/ tetraplegia, as well as thematic saturation from the last five interviews that were analyzed (see Table 1 for details on the participants). 2.3. Data collection We conducted semi-structured interviews from November 2022 to May 2024. Our interview guide broadly covered various facets of SM by incorporating our understandings from the COM-B behavior model [51–53]. This model, which explains how capability, opportunity, and motivation shape behavior [54], is particularly significant in the context of SM. Successful SM, such as managing bladder or bowel issues for individuals with SCI, requires a synergy of capability (knowledge and skills), opportunity (access to health services and support), and motivation (will and commitment) from the individuals’ side [55,56]. The interview guide was informed also by previous research in diverse daily life settings where SM is contextualized and naturalized, including work, leisure, and social participation [45,57]. Trained research professionals (CH, CZ) conducted the interviews in the participants’ native language and pilot tested the guide. To ensure clarity, we started the interviews by introducing the concept of SM as encompassing not only medical management but also broader lifestyle, emotional, and role-related aspects. We then continued with general thoughts on SM activities, starting with medical aspects before transitioning into discussions about how SM fit into their daily lives. Pilot testing indicated that this structure facilitated engagement by anchoring discussions in familiar topics before expanding to broader aspects of SM. Probes encouraged participants to reflect on how they integrated SM into their social roles, responsibilities, and routines (refer to Appendix B for the interview grid). Interviews were conducted in person (at the participant’s chosen location), via phone, or Zoom [58,59], with durations ranging from 21 to 82 min. The research E. Qama et al. Patient Education and Counseling 136 (2025) 108763 2 team only had access to an internal folder containing audio recordings of all interviews. We took field notes during each session (CH, CZ), and a researcher (EQ) wrote reflective summaries to aid in the data analysis. 2.4. Data analysis We employed thematic analysis, involving a deep reflection on the data and engagement with participants’ stories [60,61]. We began with familiarization, including repeated listening to recordings and transcript readings. We cross-referenced the initial notes with the preliminary impressions formed during the readings. One researcher (EQ) conducted the initial coding using MAXQDA software, applying broad, descriptive codes (open coding) [61]. EQ and ND then collaborated to axial coding, refining themes related to SM integration (see Fig. 2 for theme development). Approaches were defined as how individuals experience SM integration, shaped by their circumstances, capacities, and readiness. Influencing factors were defined as elements that either hinder or facilitate individuals’ ability to integrate SM practices into their everyday lives. In the final stage, four researchers (EQ, ND, CH and CZ) collaborated on theme generation that reflected a process of intertwining the data themselves and the researchers’ analytical expertise seeking consensus about meaning, aiming for a nuanced understanding of the data [47,60, 62]. To enhance trustworthiness, we employed strategies like field notes and reflective summaries [63]. Additionally, the interviewer, a native speaker with no healthcare involvement, fostered open dialogue with participants. The research team had qualitative expertise, with backgrounds in health disciplines such as speech therapy and pharmacy. Trustworthiness of the analysis was further ensured through discussions at university seminars and international conferences [64]. 2.5. Ethical considerations The study obtained ethical approval from the regional committee (ref. EKNZ 2022-00501). SwiSCI adheres to national and international Fig. 1. Participants’ recruitment flowchart. Table 1 Socio-demographics of participants. Characteristic (N =32) Value or n (%) Age  Range Median 19–78 years 49 years 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 %) E. Qama et al. Patient Education and Counseling 136 (2025) 108763 3 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). 3. Results The study findings are structured into two overarching themes: Factors influencing SM integration and Approaches to SM integration. Factors influencing SM integration highlight the broader personal, social, and structural elements that shape individuals’ SM integration strategies, whereas the approaches to SM integration describe the specific ways in which individuals incorporate SM tasks into their daily routines. Some participants described SM as a rigid, structured activity separated from other life aspects, whereas others framed it as an adaptive, integrated practice within their daily responsibilities. These variations highlight the fluid and context-dependent nature of SM, where personal agency interacts with external facilitators and barriers. 3.1. Factors influencing SM integration This study identified three themes regarding factors influencing SM integration: Mind and body dynamics, Environmental and informational dynamics, and Society and perception dynamics. We provide a detailed description below, and Tables 2–4offer an extensive list of quotes for each factor. 3.1.1. Mind and body dynamics influence SM integration The physical and emotional demands shape how individuals approach SM integration, influencing both their capacity and strategy for managing health. Physical demands, particularly energy management, affect SM integration for individuals with SCI. Medication side effects and daily activities often diminish energy reserves, requiring Fig. 2. Schematic example of code and theme development. Table 2 Illustrative quotes for theme “mind and body dynamics”. Q (1) "Because medications make me tired. Depending on what I do during the day, they make me tired to varying degrees. And I’m still figuring out how much energy I need for various things… if I have absolutely no energy left, then I need to sleep. It could even be at 6 PM…I now know, for example, that when I go to the office, I need to stop early, go home, so that I can still do something at home in the evening. Because I need energy for that, so that I’m not completely drained by then." (P7) Q (2–3) "I would have done the same exercises there [at home], but I didn’t manage, as I mentioned earlier, with the other things that kept me busy, everything that was new and different… it takes so much…Brain power. That’s also the reason why I couldn’t concentrate anymore or why I forgot everything." (P3) "Yes, I would say that what I find most challenging is this small mental, psychological aspect. Because somehow, you need time to navigate between what I can do, what is possible, what I want, and what I don’t want." (P13) E. Qama et al. Patient Education and Counseling 136 (2025) 108763 4 participants to carefully plan their day to avoid complete exhaustion. This may involve adjusting work hours and scheduling downtime to maintain functionality for later tasks (Table 2, Q (1)). Emotional and cognitive factors also play a key role in integrating SM into daily routines. Participants noted the substantial "brain power" needed to manage new routines, especially when adapting to major life changes. This mental load impacted their ability to stay focused on SM tasks, resulting in lapses in practice. Additionally, psychological challenges, such as motivation and navigating personal limits, added complexity to decision-making around SM, requiring individuals to continuously assess and balance what was feasible and desirable within their day-to-day lives (Table 2, Q (2–3)). 3.1.2. Environmental and informational dynamics influence SM integration This group of factors encompasses external elements that play a role in shaping SM integration. Practical aspects, such as living arrangements and support availability, impact the ease of managing health tasks. For instance, living alone often necessitates handling all tasks independently, adding to the complexity of SM routines (e.g., household chores and managing health apart). Conversely, some participants benefit from specific home modifications that facilitate mobility and routine tasks, such as wider showers and accessible kitchens. However, reliance on Table 3 Illustrative quotes for theme “environmental and informational dynamics”. Q (1–8) "It’s a bit of everything. I live alone and do everything myself. So, whatever needs to be done at home, I have to do. So, it really affects me throughout." (P7) "But the best part was that I wasn’t alone during the first few days of getting used to being back home. I believe it would have been much more challenging for my mental state if I had gone from being in the protected environment of the [rehabilitation center] and being part of a large, cool group to suddenly living alone. It would have been like going from 100 to 0 overnight". (P19) "They also check if the bowel is empty, so it takes two days until it comes again. If there’s something in there, it’s more difficult. I can clean, but I can’t see what I’m cleaning. That’s annoying… The problem is always that I need help. That’s my problem. They come at 6…It’s always a bit stressful." (P2) "So, you have to be a bit self-reliant. Spitex is also an option, of course. You can call them, and they will organize and provide everything. You don’t have to do much…Because with Spitex, they even come to wash the person themselves, administer medications, and so on. I only needed household help, and that too, at most twice a week. That’s what we agreed upon." (P12) "Can we stop home care service? That’s the main hurdle. In the evening, with home care service, you’re less free than in the morning. That’s quite significant. But in the evening, you always have to be at home on time. You don’t know when home care service will come. They come between 7 and 10 in the evening. That’s uncomfortable." (P16) "The sessions [therapy] are in the middle of the afternoon, which is a bit annoying because you can’t do anything else. You can’t say, "I’ll go out in the early afternoon, and at 3 pm, I’ll be there." Then, after 3 pm, you have almost two hours at home, and by 5 pm, it’s dark…the afternoon is dead… It’s the same with the nurse. She comes at 3 pm. So, it’s a bit annoying." (P32) "Then the renovation came up. I was lucky about that. I’ve been living in the same house for over 40 years…It’s 150 m2 on one level. It’s like an apartment where everything is on the same level…The doors are flat at the bottom. We didn’t need to modify the toilet. We had to modify the shower. There was a bathtub there. Now I have a 120 cm wide shower. (P8) "They also looked at the shower, how I get in here. They wanted to remodel the kitchen…I set up a table and made sure I can maneuver around it. I prepare and cook here. I have a hot plate there. I have a Thermomix, which is great, of course. Genius. Then I can do my things here on the table. I don’t have to… If I have to wash something by hand, I wash it. It’s always a bit tedious to empty it, but it works." (P2) Q (9–12) "At some point, I realized that, for example, I couldn’t sweat in the gym. I could strain and do whatever I wanted, but I wouldn’t sweat…I wasn’t prepared on how to handle myself in the summer. You have to make sure there’s shade. If there’s something I need to do more it’s sun rest… the preparation for the sun…I never really got fully prepared for it." (P16) "One thing that comes to mind is sexuality. It’s all about sexuality… But sexuality always involves two people. It can’t be that my wife is a sparring partner for my sexuality…It’s not that simple. I believe that apart from the question of whether there is sexuality, whether there is an erection, it’s always preceded by the assumption that a partner is completely available. That’s not the case. That’s one of the aspects I have to mention. In urology, they may be more open…But it’s actually a taboo…That sexuality is, at least, a partnership where someone doesn’t just come into a seminar…this workshop came relatively early for me. It’s a must. That was okay. But my wife didn’t attend because she finds it repulsive." (P17) "What I find helpful is that a group formed during rehab. We still have contact. Very different physical conditions. But that’s something I appreciate extremely…I found the peer exchange moderately helpful. At first, I had someone who was a tetraplegic. I canceled it….That was a bit difficult. It’s not bad to learn from the peers. That’s not bad. I find it very useful. But the individual peer sessions didn’t bring me much. The one-to-ones. With those I met, it was different. From the physical conditions, everyone is different. Now you’ve started working again. I find that useful. I don’t know if that can be organized. Or if it’s something that runs self-organized. I find it useful. You meet with people you get along well with." (P30) "Yes, we have a WhatsApp group where someone writes to us. Then I share with you a video that you can experience…That’s something that benefits me. The real possible possibilities. If I had had the accident 20 years ago, I wouldn’t have survived because I can’t see it. And secondly, you can be in contact with the phone, with WhatsApp, with other people" (P20) Table 4 Illustrative quotes for theme “society and perception dynamics”. Q (1–2) "I’m about to start working a bit again…when I go to the toilet, it won’t be done in 5 min. It takes about fifteen minutes or so. So no one should be surprised if I disappear for 20 min. That’s just how it is." (P29) "Yes. Work is basically not a problem. I’ve told the boss, if things get too much for me, I might just retreat to the car, lean back and relax for a bit. They also said it wouldn’t be a problem…I feel like you could take a break, if needed. Because of the flexible working hours and the guided working hours, I can manage very well… If something’s wrong, I have to say quickly, then I’ll pull back or go home earlier. I want to relax." (P25) Q (3–6) "When someone asks if I had an accident, I say, well, not exactly, no. I actually had a herniated disc, had surgery, woke up with paralysis, and had to go to rehabilitation to learn to walk again. And then they’re like, oh, now you’re standing, now you’re walking (when I do the exercises and movements)… now you’re fixed, you should be able to walk, so why do you still need a wheelchair? And deep down, I feel like I shouldn’t care what others think, but at the same time, it’s not always easy to ignore their opinions…I feel like people might think I’m faking or taking advantage of the help." (P13) "People are extremely surprised when you come on a bike. I get off or on almost elegantly. Then I take the crutches. Then I wobble. From the bike to the store. You don’t see that often. I think it needs more awareness in society. There is not just black and white, but also a lot in between…I don’t know if it needs more awareness. The family doctor said it’s a rarity… But that being in a wheelchair doesn’t mean always being in a wheelchair, that’s noticeable to me. If someone is in a wheelchair, their biggest problem usually isn’t that they can’t walk, but that bladder and bowel management is a huge issue. People don’t always get that. I sometimes ask, if you can walk, why are you in a wheelchair? The wheelchair has such a stigma that many people can’t imagine being in it voluntarily…The way you walk isn’t any healthier. But it’s so stigmatized, that’s true." (P30) "Because there are many things from the outside, they don’t see that. They don’t see that you need a catheter. I remember here, colleagues visited me. And we sat together, drank cola and so on. And then I had to go to the toilet. Then I said, it takes a little longer. And afterward, they asked why it took so long. Then I showed them the catheter. They almost fled." (P29) "When I had incontinence, we made an arrangement. I had to say, maybe not today. I had colleagues who understood. They said, we’ll cook at your place." (P21) E. Qama et al. Patient Education and Counseling 136 (2025) 108763 5 home care services sometimes introduces challenges, as services often operate on fixed schedules that restrict personal freedom and spontaneity, disrupting participants’ routines such as waiting for home care visits in the evenings (Table 3, Q (1–8)). Informational and social support also proved essential in SM integration. Many participants find value in peer networks and ongoing connections with rehabilitation groups, offering both emotional support and practical advice on managing SCI and day-to-day challenges (e.g., sharing tips in WhatsApp groups, or keeping up with peer discussions even after rehabilitation). Additionally, some expressed the need for guidance and information on topics often overlooked in medical settings, such as managing body temperature during seasonal changes (e.g., sweating in summertime) and maintaining intimate relationships (e.g., getting the partner to attend workshops). (Table 3, Q (9–12)). 3.1.3. Society and perception dynamics influence SM integration This group of factors encompasses societal perceptions and misconceptions around SCI, shaping how individuals approach and experience SM integration. In work-related settings, accommodating SCIspecific needs (e.g., extended restroom breaks or rest periods) is sometimes met with understanding but can still underscore the challenges of balancing health management with work responsibilities. Although some workplaces offer flexibility, individuals may feel the need to manage perceptions around their unique needs, affecting their comfort and confidence in these settings (Table 4, Q (1–2)). Social interactions around SCI also reveal gaps in societal understanding. Individuals are questioned about their need for mobility aids if they show any physical ability (e.g., going from a wheelchair to crutches), or they may feel hesitant to explain the realities of managing SCI needs like catheterization (e.g., friends or colleagues showing reluctance to the conversation). Such interactions can create barriers to open social engagement, making individuals feel as though they must constantly justify their routines or downplay certain SM practices to fit societal expectations (Table 4, Q (3–6)). 3.2. Approaches to SM integration This study identified three distinct themes as approaches to SM integration: The compartmentalizing approach, The mixing approach, and The embedding approach. We provide a detailed description below, and Tables 5–7offer an extensive list of quotes for each approach. 3.2.1. The compartmentalizing approach to SM integration This approach reflects participants’ commitment to addressing either health-related SM tasks or other life activities as separate priorities, depending on the situation. For instance, some participants view bowel and bladder management as essential to prevent complications, which motivates them to dedicate significant time to hygiene practices and prioritize health over social or leisure activities (Table 5, Q (1–2)). The same applies for physical recovery (Table 5, Q (3–4)). However, personal responsibilities, such as parenting, sometimes necessitate a delay or set aside of SM activities to attend to family needs (Table 5, Q5). Some participants feel that social outings or vacations justified a shift in focus, canceling therapies to engage in these events fully (Table 5, Q (6–7)). 3.2.2. The mixing approach to SM integration The mixing approach is characterized by a flexible and adaptive attitude toward SM integration. Here, the focus is on both SM tasks and other life activities, with participants adjusting them based on the circumstances, available time, and type of activity. They often modify the frequency to fit their daily lives, such as by experimenting with the timing of catheterization (e.g., starting at 6 a.m. or 2 a.m.) or adjusting exercise routines (e.g., daily or twice a week) to meet their physical needs (Table 6, Q (1–2)). Participants also adapt techniques to make SM tasks more manageable such as simplifying decubitus prevention steps, depending on the home environment or adjusting food preparation (e.g., preparing simpler meals) to save time and reduce effort (Table 6, Q (3–4)). Schedules are often rearranged to balance SM with other aspects of life, postponing therapy sessions or delaying pressure relief when social engagements or other activities take priority (Table 6, Q (5–7)). In some cases, participants could even decide to skip SM activities entirely for rest or personal time, recognizing the need to take occasional breaks from the heavy demands of therapy (Table 6, Q (8)). 3.2.3. The embedding approach to SM integration Participants in this SM integration approach maintain both health tasks and daily life activities without adjusting or compromising on either. Multitasking is a common strategy here, such as studying while doing electrostimulation, watching TV while exercising, or catheterizing during car journeys to avoid restroom stops (Table 7, Q (1–3)). Preparation also helps participants to maintain control over their health without having to sacrifice their regular routines. They organize tasks to avoid disrupting their daily routines, such as using medication organizers, batch-cooking meals for the week, and carrying items like pads or urine bags for outings (Table 7, Q (4–8)). Participants also use enjoyable or essential daily activities, like hobbies or household chores, as opportunities to keep up with SM exercises (e.g., engaging in a hobby that involves movement or using chores as physical activity) (Table 7, Q (10–12)). Finally, when tasks are too challenging or time-consuming, participants rely on family or professional help to ensure SM and daily responsibilities are managed (e.g., having partners prepare meals or support services organize medications (Table 7, Q (13–15)). 4. Discussion This study aimed to explore the personal experiences of SM integration in individuals with SCI by uncovering both their approaches and influencing factors. Table 5 Illustrative quotes for “the compartmentalizing approach”. Q (1–2) "The essential thing is bowel management, emptying, etc…that’s very uncertain. So, I took the risk. I would take the risk that I would be dealing with bowel management all day, and nothing else. That’s of course bad… And I notice that this is something that affects my mood the most." (P26) "Of course, there are many things I used to enjoy doing. But that’s not a topic for me anymore…You can easily imagine that. When you watch motocross, in [name of a city], for example, there comes a point where you have to catheterize or use the portable toilets…That’s why it was more important for me to maintain good hygiene… then risking a potential bladder infection." (P14) Q (2–4) "But the focus was on rebuilding physically. The other aspect is secondary" (P15) "That’s right. My health is my top priority. I didn’t find it difficult to give up such plans. We have friends who come over, but I never go out. How could I? It’s impossible…" (B11) Q (5–7) "…at 6 p.m. [at rehabilitation] it’s time to relax. I could lie down, watch TV. That didn’t work at home. I can’t tell my little one, "I’m going now." (P6) "I’ve canceled MTT twice because I wanted to do something social. Which gives a different kind of pressure, it’s not just one thing, it’s also the social aspect. And most people can do it in the evening, not during the day. Prioritizing MTT, but if it doesn’t work out otherwise, then it gets shortened." (P30) "I: Did you have to cancel any therapies during that time? Or were there no therapies scheduled? P: No, I canceled them for a week. It was only for a week…Mr. [name of doctor] said that during that week, you will learn more than we could teach you in a few weeks" (P10) E. Qama et al. Patient Education and Counseling 136 (2025) 108763 6 Regarding the approaches, the analysis revealed three different ways of SM integration, with three distinct focuses. In the compartmentalizing approach to integration, individuals concentrateon one priotity at a time; in the mixing approach, they focus on both priorities with modifications; and in the embedding approach, they concentrate on both priorities without any adjustments. Research in SCI and other chronic conditions [65] has similarly explored the balancing act between managing a chronic disease and living a meaningful life [27–30]. Zanini et al., for instance, describe the flexibility in prevention of pressure ulcers, showing the different styles that people apply, sometimes by delegating and sometimes by being selective with their priorities [8]. Our study, however, provides novel insights by examining SM as a multifaceted process that goes beyond isolated medical tasks. We emphasize SM as the integration of health management as well as personal (e.g., parental roles, household tasks), social (e.g., vacations, outings), and professional responsibilities. Regarding the influencing factors, we identified distinct categories ranging from personal to external elements, including resources, social perceptions, and structural constraints, which align with previous research [66–69]. Our study extends these findings by showing that understanding one’s body is crucial not just for specific health-related tasks but for all aspects of daily life activities. For instance, bodily limitations or energy levels, such as fatigue or emotional fluctuations, can interfere with the decision of choosing health or daily activities. Informational resources are crucial, particularly when it comes to intimacy and sexuality, yet existing SCI interventions often overlook this SM Table 6 Illustrative quotes for “the mixing approach”. Q (1–2) "I started catheterizing at 6 a.m. and 2 a.m… You have to experiment. You have to move things around… If it works for you, you can do it that way." (P16) "They showed me enough exercises, in great detail. Ultimately, it’s up to the individual how much you actually do them at home. If you do them daily or just twice a week, I sometimes catch myself thinking, "I’ve done enough today, and I don’t feel like lying on the mat for another half hour doing exercises," (P19) Q (3–4) "So, they gave me a basic package or a basic set of instructions that covered everything I needed to know. And then I tried it out. At first, I tried it out exactly as they said. But I thought that it wouldn’t work for me at home the same way. So, I tried to figure out how I could make it easier for myself. So, I think they did well in that aspect. I got all the information I needed there. They also mentioned multiple times and quite intensively that decubitus prevention was something I really had to pay attention to." (P7) "Yes, the main thing that has changed significantly for me lately, especially compared to before, is cooking… I’m trying to keep things simpler and make meals that are less elaborate or require less chopping. So, I aim for something that’s not too time-consuming or complicated, rather than just stirring things in a pan." (P19) Q (5–7) "Occasionally doing something with colleagues. And there, I feel like I have to decide what to do…for example, MTT…The advantage is that I don’t have fixed MTT times…That’s a big advantage. Then you can easily reschedule without any problems." (P6) "Yes, it can be stressful. If I realize I’ve been in my wheelchair for two hours without shifting, because I’m out with people and haven’t relieved pressure yet, I should have relieved pressure by now. I should have relieved it when I had the chance. But sometimes, when you’re out and about, you don’t have the opportunity, even though you know you should. It’s like, "I can’t do it right now." But if it’s possible when I’m home, I’ll tell myself to lie down for a moment, to shift my position. It’s essential because later, if I want to go for lunch and then have physiotherapy, I won’t have the time." (P7) "I: Were there situations where you decided against self-management? P: No, not really. That I delayed it, that happened. We learned to catheterize every four hours and at 7:00 the first time. Over time, I postponed it more and more. If I wanted to sleep longer, I did bowel management in the afternoon." (P21) Q (8) "You have to find a daily routine and it can’t just be 100 % therapy, otherwise you might as well stay in the rehab facility…I would say the biggest risk I’ve seen so far is perhaps the balancing act between how much I do, because, you know, the physiotherapist also says that I need to push these muscles a bit to the maximum so that they get triggered and make progress. Physiologically, I’m aware of that. But at the same time, being able to say, you know, no, now I’ll take half a day off." (P13) MTT-medical training therapy. Table 7 Illustrative quotes for “The embedding approach”. Q (1–3) "I usually do electrostimulation right after school. I don’t waste much time because I can read a book or study while the muscles do it by themselves." (P18) "Yes, when you just do them at home, with two balls, mainly for the hands, which I do. That’s actually mostly what I do at home. And I do it in front of the TV as well." (P15) "We came home from [name of a city] yesterday. I drove myself and can drive myself. It went quite well…I can do it while catheterized. Then it doesn’t bother anyone. It’s much easier for me, and I feel freer. I don’t have to wait to find a clean restroom" (P17) Q (4–8) "I only do that once a week. I have a supply box, I prepare it, that’s more on the side. When I finish everything, a good hour is gone. But that’s a day I can use for something else. Because if I sit down every morning to organize the medications, I don’t have the time for that, because I still have to go to training and so on. Besides, it’s annoying. It’s really better to sit down once and get it done." (P29) "I actually enjoy cooking and usually do it on weekends when I have time. I make large portions so that I can eat them throughout the week." (P12) "I drink a little less now because there isn’t always a toilet nearby. If I have a long car journey, I make sure not to drink too much beforehand." (P23) "I just have to make sure I have certain things with me. Like the citric acid or an absorbent pad when I notice that… Well, I have a completely spastic bladder, and it can suddenly contract, rendering everything useless. It just tightens up. So, two or three drops. But without a pad, it would be wet underneath and uncomfortable. Things like that… Or maybe I’d pack a urine bag if I go to the cinema or make one myself from Bavaria. If I’m going to a three-hour movie, I do that. But otherwise… It’s mostly about planning ahead and dealing with bladder-related issues." (P4) Q (10–12) "I’m part of a wagon-building group…Ultimately, I see the whole wagon-building process, when it starts again, as an exercise, as training. Because these are all movements I might not make in my normal daily life" (P19) "Yes, household chores also come into play. That’s like therapy too. Vacuuming. And yes, there are also tasks that I don’t particularly enjoy, like dusting and dishwashing." (P12) "The doctor told me, I could do physiotherapy…I have a lot of fun at home. I ride at home or go out with friends. I always do transfers. For me, it’s more fulfilling than going to a fitness center…" (P28) Q (13–15) "Yes, that’s right. I’m fortunate to have that support. My wife works, and I’m often alone for lunch. But things are already prepared, and we discuss beforehand what I can eat. That’s actually quite helpful." (P3) "My partner takes care of the entire household when it comes to household chores. She handles that. Well, I cook now too. But she does a lot more… We’ve decided to have groceries delivered, almost everything. So, we don’t have to go out ourselves." (P5) "Spitex prepares my medications, and I have a pill organizer at home, and they fill it once a week. Then they come and do that. My husband helps me prepare it in the evening and morning, so he does the majority of it. Without him, I’d be in a tough spot, I have to say. He’s a big help. " (P9) Spitex-home service. E. Qama et al. Patient Education and Counseling 136 (2025) 108763 7 aspect [70]. Lastly, the stigma associated with invisible disabilities, such as incomplete SCI, or SM tasks like bladder and bowel care, creates barriers to SM integration. These aspects are often overlooked in intervention design and are not explicitly considered as factors that could impact SM integration, resulting in their exclusion from SM interventions [13]. Our study has some important strengths. First, it presents a novel perspective on SM, extending beyond isolated medical tasks [6] to explore how SM is embedded in daily life [65], balancing personal, social, and professional responsibilities. Second, this is the first study, to our knowledge, to explore SCI patients’ experiences with SM integration post-discharge from initial rehabilitation. Third, the qualitative approach allowed for an in-depth exploration of individuals’ lived experience, offering rich, nuanced insights. Our use of maximum variation sampling ensured that the findings reflect a diverse range of experiences across different injury levels and demographics, enhancing the transferability of the results. Finally, our study adhered to the Standards of Reporting Qualitative Research (SRQR), ensuring transparency and replicability. By thoroughly documenting our data collection and analysis procedures, we offer a robust and reliable framework that can guide future research in this area. Several limitations must be acknowledged. First, generalizability may be limited as this study was conducted with participants living in Switzerland, where healthcare policies, insurance structures, and rehabilitation services [71] may differ from other countries [72]. However, we included participants from four rehabilitation centers across Switzerland, which already provided some diversity in terms of cultural and environmental factors, even within the same country. Second, the language restriction in our recruitment criteria may have excluded non-Swiss (German, French, or Italian) or English speakers. This means that we may have missed valuable perspectives from non-Swiss speakers, such as immigrants and expatriates, who could have contributed valuable perspectives on SM integration, particularly regarding language barriers and navigating a foreign healthcare system. Third, we do not have knowledge of the health behaviors and lifestyles the participants had before their SCI and whether they influenced their approach to SM integration post-injury. Our study highlights several areas for further exploration. Firstly, SM approaches cannot be definitively assigned to individuals, as they may vary based on the nature of the activity (e.g., delegable or time-critical task) and personal circumstances or readiness [73]. Although the embedding approach appears ideal, longitudinal research is needed to assess whether individuals shift between approaches over time and what factors facilitate the most effective approach for each person. Second, further research on problem-solving and decision-making skills [11, 74]—particularly as individuals encounter evolving circumstances and external factors—could offer insights into the mechanisms that drive SM integration [75]. Additionally, studies should examine whether subgroups of individuals with SCI (e.g., based on injury level, social background, or cultural factors) experience SM integration differently. Identifying patterns among different groups could help tailor interventions to better meet the diverse needs of individuals with SCI. 5. Conclusion The integration of SM practices post-discharge is shaped by personal and contextual factors, including environmental, social, and psychological influences, as well as the diverse approaches individuals take in their SM journey. The findings contribute to a more nuanced understanding of how to balance both medical and role management in SCI post-discharge. Supporting individuals in this process requires interventions that are contextually grounded but also adaptive and resilient—continuously evaluated and appraised over time. Additionally, this study highlights the importance of longitudinal research to track and understand the evolving nature of an individual’s SM journey after rehabilitation, offering insights for future investigations. 5.1. Practice implications By emphasizing the importance of adaptation and situating health tasks within the broader context of daily life, our findings call for more flexible and personalized SM interventions that go beyond traditional informational modules [76]. As literature on transition phase underscores, the ability to adapt SM strategies in real-world settings is influenced by the contextual and structural barriers individuals face post-discharge [21,22,24]. This suggests that interventions should not only provide technical knowledge but also support individuals in developing the necessary skills and confidence needed to integrate SM into their evolving lifestyles [75]. Adherence to these interventions is not solely a matter of following instructions but rather of accommodating the diverse and dynamic realities individuals face [77–79]. Rehabilitation settings, which are critical for long-term adjustment to SCI [80–82], should consider assessing the specific approaches individuals take toward SM integration, as these approaches can vary depending on personal circumstances and contextual influences. Since individuals may develop different strategies for integrating SM into their daily routines, rehabilitation centers could implement assessments (e.g. follow-up visits, evaluation interviews, or dedicated assessment tools) to gain a clearer understanding of the SM approaches each individual tends to follow [83,84]. This assessment would serve as a foundation for providing ongoing support, ensuring that SM education remains relevant in guiding individuals SM needs post-discharge [85–87]. Effective communication between health professionals and patients is crucial for promoting successful SM integration [88,89]. Beyond treatment plans [79,84], professionals should provide tailored guidance and discharge education to ensure SM tasks fit into daily life. SM should align with patients’ priorities, which extend beyond functional independence to include education, family, and leisure activities [90,91]. As priorities may shift over time, particularly in the first years post-injury [57] communication strategies and education sessions on SM integration can help make health tasks more manageable and relevant. Funding sources 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. CRediT authorship contribution statement Diviani Nicola: Writing – review & editing, Validation, Supervision, Project administration, Methodology, Funding acquisition, Formal analysis, Conceptualization. H¨ afliger Clara: Writing – review & editing, Project administration, Investigation, Formal analysis, Data curation. Jordan Xavier: Writing – review & editing. Scheel-Sailer Anke: Writing – review & editing. Zanini Claudia: Writing – review & editing, Investigation, Formal analysis. Rubinelli Sara: Writing – review & editing, Validation, Supervision, Methodology, Funding acquisition, Conceptualization. Qama Enxhi: Writing – review & editing, Writing – original draft, Project administration, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper. E. Qama et al. Patient Education and Counseling 136 (2025) 108763 8 Appendix A. SRQR_Checklist Standards for Reporting Qualitative Research (SRQR)* http://www.equator-network.org/reporting-guidelines/srqr/    Page/line no(s). Title and abstract  Title - Concise description of the nature and topic of the study Identifying the study as qualitative or indicating the approach (e.g., ethnography, grounded theory) or data collection methods (e.g., interview, focus group) is recommended Title page Abstract - Summary of key elements of the study using the abstract format of the intended publication; typically includes background, purpose, methods, results, and conclusions 1 Introduction  Problem formulation - Description and significance of the problem/phenomenon studied; review of relevant theory and empirical work; problem statement 2–3 Purpose or research question - Purpose of the study and specific objectives or questions 3 Methods  Qualitative approach and research paradigm - Qualitative approach (e.g., ethnography, grounded theory, case study, phenomenology, narrative research) and guiding theory if appropriate; identifying the research paradigm (e.g., postpositivist, constructivist/ interpretivist) is also recommended; rationale** 3 Researcher characteristics and reflexivity - Researchers’ characteristics that may influence the research, including personal attributes, qualifications/experience, relationship with participants, assumptions, and/or presuppositions; potential or actual interaction between researchers’ characteristics and the research questions, approach, methods, results, and/or transferability 5–6 Context - Setting/site and salient contextual factors; rationale** 4 Sampling strategy - How and why research participants, documents, or events were selected; criteria for deciding when no further sampling was necessary (e.g., sampling saturation); rationale** 4–5 Ethical issues pertaining to human subjects - Documentation of approval by an appropriate ethics review board and participant consent, or explanation for lack thereof; other confidentiality and data security issues 7 Data collection methods - Types of data collected; details of data collection procedures including (as appropriate) start and stop dates of data collection and analysis, iterative process, triangulation of sources/methods, and modification of procedures in response to evolving study findings; rationale** 5 Data collection instruments and technologies - Description of instruments (e.g., interview guides, questionnaires) and devices (e.g., audio recorders) used for data collection; if/how the instrument(s) changed over the course of the study 5 Units of study - Number and relevant characteristics of participants, documents, or events included in the study; level of participation (could be reported in results) Appendix B Data processing - Methods for processing data prior to and during analysis, including transcription, data entry, data management and security, verification of data integrity, data coding, and anonymization/de-identification of excerpts 5–6 Data analysis - Process by which inferences, themes, etc., were identified and developed, including the researchers involved in data analysis; usually references a specific paradigm or approach; rationale** 6, and Fig. 2 Techniques to enhance trustworthiness - Techniques to enhance trustworthiness and credibility of data analysis (e.g., member checking, audit trail, triangulation); rationale** 6 Results/findings  Synthesis and interpretation - Main findings (e.g., interpretations, inferences, and themes); might include development of a theory or model, or integration with prior research or theory 7–11 Links to empirical data - Evidence (e.g., quotes, field notes, text excerpts, photographs) to substantiate analytic findings 7–11 Discussion  Integration with prior work, implications, transferability, and contribution(s) to the field - Short summary of main findings; explanation of how findings and conclusions connect to, support, elaborate on, or challenge conclusions of earlier scholarship; discussion of scope of application/generalizability; identification of unique contribution(s) to scholarship in a discipline or field 11–12 Limitations - Trustworthiness and limitations of findings 13 Other  Conflicts of interest - Potential sources of influence or perceived influence on study conduct and conclusions; how these were managed Declaration of competing interests Funding - Sources of funding and other support; role of funders in data collection, interpretation, and reporting 15 Reference:  O’Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: a synthesis of recommendations. Academic Medicine, Vol. 89, No. 9 / Sept 2014 DOI: 10.1097/ACM.0000000000000388  * The authors created the SRQR by searching the literature to identify guidelines, reporting standards, and critical appraisal criteria for qualitative research; reviewing the reference lists of retrieved sources; and contacting experts to gain feedback. The SRQR aims to improve the transparency of all aspects of qualitative research by providing clear standards for reporting qualitative research. ** The rationale should briefly discuss the justification for choosing that theory, approach, method, or technique rather than other options available, the assumptions and limitations implicit in those choices, and how those choices influence study conclusions and transferability. As appropriate, the rationale for several items might be discussed together. Appendix B. Sample questions for the semi-structured interview Topic Sample questions Introduction and warm-up •Are there any activities for self-management 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? Initial rehabilitation Thinking back to the time you were in first rehabilitation and more specifically, to when you were taught about SM activities. •How was it for you learning the new behaviors of taking care of yourself? •What was particularly useful and what, instead, was not? •Is there anything you think you should have been taught in first rehab but was missing? (continued on next page) E. Qama et al. Patient Education and Counseling 136 (2025) 108763 9