Опыт и проблемы лиц с множественным склерозом и низкой посещаемостью клинических исследований: качественное исследование.

Introduction

2.8 million people are living with Multiple Sclerosis (MS) worldwide, and Denmark currently has the highest incidence, with around 700 people diagnosed with MS annually [ 1 – 3 ]. MS is a chronic autoimmune disease affecting the central nervous system, where inflammation, demyelination, and axonal loss occur at early stages of the disease. Its cause is unknown, and currently, there is no cure [ 4 , 5 ]. MS manifests in different phenotypes, distinguished by relapsing-remitting, secondary-progressive, and primary-progressive phenotypes [ 4 , 6 ]. MS most often strikes in early adulthood, and the majority living with MS are between 30 and 59 years old [ 2 ]. Twice as many women as men are affected and people with MS have a shorter life expectancy of approximately 8–10 years compared with the general population [ 7 ]. Symptoms vary based on affected central nervous system areas [ 4 , 5 ], but people often deal with challenges in physical, psychological, and social domains [ 8 – 12 ].

The World Health Organization (WHO) recommends self-care interventions across all countries and economic settings as a critical path to reach universal health coverage, promote health, and serve the vulnerable populations [ 13 , 14 ]. Dorothea Orem’s self-care deficit theory emphasizes each individual’s ability to perform self-care [ 15 , 16 ]. It consists of several key components: self-care activities to maintain well-being, self-care agency (the ability to engage in self-care, influenced by basic conditions like physical and cognitive abilities, motivation, and knowledge), and self-care requisites (universal, developmental, and health-related needs) [ 15 ]. A self-care deficit occurs when individuals cannot meet their self-care needs due to limitations in their self-care agency caused by illness, injury, disability, or other factors [ 15 ]. Orem’s emphasizes the individual’s capacity and responsibility to maintain their health and well-being [ 15 ]. It promotes independence and empowerment by enabling individuals to meet their own needs effectively. It highlights the importance of self-care independence, stressing that individuals should be supported in assessing their abilities, receiving education, and accessing necessary interventions when needed [ 15 ]. This enhances individuals’ quality of life by ensuring they can manage their health effectively without undue reliance on others or healthcare systems [ 15 ].

Self-care capacity among people with MS was found to be high, with 82.1% classified as capable [ 17 ]. A significant positive correlation has been identified between the level of adaptation to MS and the level of self-care agency [ 18 ]. As the level of adaptation to the disease increased, people’s self-care agency levels increased as well [ 18 ]. Differences in characteristics exist between groups of low and high levels of self-care, were those with low self-care more often are men, younger age group and lower levels of education, emphasizing the importance of selective efforts with regard to supporting self-care [ 19 ].

As life expectancy for people with MS increases, managing the growing population with greater disability and age-related comorbidities becomes essential [ 20 , 21 ]. In Denmark, MS specialists are recommended to clinically follow the patients according to their individual needs or, for those on disease-modifying therapies, at least once a year [ 22 ]. In contrast, the evidence-based guidelines from United Kingdom, National Institute for Health and Care Excellence (NICE), recommends that people with MS receive a comprehensive care review at least once a year by a specialist [ 1 , 23 ]. This annual review ensures that treatment plans remain aligned with patients’ changing conditions [ 1 , 23 ]. However, many people with MS in Europe face delays in diagnosis, and limited treatment and care access [ 24 ]. Research on the challenges faced by people who do not receive specialized care is limited, leaving a gap in understanding their individual experiences. This affects our knowledge of those who lack comprehensive care, resulting in insufficient insight into their experiences and challenges with MS. This limited representation may lead to an underestimation of the true burden of MS [ 25 ]. Thus, this study aims to explore experiences in people with MS who do not attend clinical follow-up, and their needs in relation to healthcare, with a special focus on Orem’s theory of self-care.

Methods

A qualitative study with individual interviews and thematic analysis inspired by Braun and Clarke was applied [ 26 , 27 ]. This design and analysis approach was chosen due to its suitability for investigating people’s experiences. Several researchers, both female and male, with extensive expertise in research, MS, and the applied research methods contributed to this study. The study adhered to the Consolidated Criteria for Reporting Qualitative Studies (COREQ) checklist [ 28 ].

Participants recruitment

In this study a purposive sampling strategy was used [ 29 , 30 ]. Pre-established inclusion and exclusion criteria were used to minimize selection and sample bias [ 26 , 27 ]. Participants were invited to take part in the study through an invitation prepared by the first author, posted on the Danish Multiple Sclerosis Society’s website, and presented at one of the Danish MS hospitals. The invitation was written in simple Danish language and reviewed by both the authors and an MS specialist. People with MS who attended MS clinics, on average, less than once pr. year or not at all since their MS diagnosis, who had a confirmed MS diagnosis by a Neurologist according to the at that time respective diagnostic criteria for MS [ 31 , 32 ], a minimum of 5 years diseases duration, and were over 18 years of age were included in the study. People with MS who were unable to speak or understand Danish were excluded. Based on national [ 22 ] and international recommendations, people with MS are recommended to receive an annual care review by a specialist [ 1 , 23 ]. Therefore, our inclusion criteria on low attendance are defined as attending less than one scheduled follow-up visit per year in Danish MS clinics since diagnosis on average, or not at all.

Ethical considerations

The principles and guidelines defined by Declaration of Helsinki [ 33 ] and Danish Data Protection Agency [ 34 ] law were followed, as well as the Regulation of the European Parliament and of the Council on the protection of natural persons in relation to processing personal data [ 35 ]. Participants were informed about the nature of the study and provided both oral and written informed consent, in accordance with the “Guidelines for giving oral participant information” by the National Committee on Health Research Ethics [ 36 ]. Participants were informed of their right to withdraw at any time, knowing it would not cause any harm to them or affect them in any way. All participants were capable of ethically and medically consenting for their participation.

Data collection

Fifteen interviews were conducted in this study, which was considered a sufficient sample size to support a rigorous thematic analysis and generate meaningful findings [ 30 ]. Data collection took place in Denmark between September 2022 to February 2024 trough individual semi-structured interviews with open-ended questions. The interview guide was developed for this study consulting Steinar Kvale [ 37 ] method of preparing a qualitative research interview (Supplementary Table 1 ). To improve question flow, structure, and participant comfort, the interview guide was pilot tested on two individuals with chronic illness [ 38 ]. Participants were recruited nationwide and were able to choose the interview conducted at their home, or virtually through a secure connection provided by Zealand University Hospital. To ensure privacy and address the sensitivity of exploring personal aspects of their lives, participants were also giving the choice to hold the interview at the Department of Neurology, Zealand University Hospital. While most of the interviews were conducted individually, two participants opted to have peers present during their interviews for comfort and support.

Sociodemographic information was collected in connection with the interviews. The interviews began with questions like “Would you like to start by telling me a little about yourself and how you are feeling?”, “Can you describe your daily life for me so I can better understand what it’s like to be you?”. If necessary, exploratory questions were used to elaborate on details “When you say… do you mean…?”, “Please can you tell me more about…”, “Please feel free to give an example”. The interviews were audio-recorded and transcribed for analysis. Two participants were excluded during data collection: one declined before the interview, and another did not meet the inclusion criteria regarding attendance, as they were regularly seen in a clinic and mistakenly believed the study was open to all individuals with MS. Each interview lasted for approx. 1 h with variation between 30 and 90 min. Data saturation began to appear after 12 interviews, but data collection continued to confirm no new insights emerged and 15 participants were included.

Data analysis

Thematic Analysis by Braun and Clarks was performed [ 26 , 27 ]. The analysis was driven by an inductive approach that allowed the data to unfold and create narratives about the participants experiences. Codes and themes were identified at the latent level to identify and examine the underlying assumptions and conceptualizations shaping the semantic content of the data. The first author performed the initial open coding using NVivo, which was then followed by axial coding [ 39 , 40 ]. This process aimed to explore the connections between codes and systematically organize and connect the codes into more comprehensive categories and themes. Following that, all authors engaged in discussions of the codes and themes, resulting in a refined definition of the central themes (Fig.  1 ). The first author translated selected quotes that exemplified the themes and subthemes into English, following quality assurance criteria to ensure accuracy and proper medical language usage in translation [ 41 ]. The translated quotes were reviewed and approved by all authors and included in the presentation of findings to provide transparency.

Schematic depiction of the Thematic analysis’s six phases

Theoretical perspectives

Dorothea Orem’s self-care deficit theory allowed us to interpret the data and examine how participants navigate their everyday lives with symptoms, daily routines and the resources they utilize to maintain their wellbeing.

In the initial phase of developing the interview guide for this study, we incorporated Dorothea Orem’s Self-Care Deficit Theory [ 15 ] to ensure that the questions were aligned with the research objectives and connected to the broader theoretical framework. Given the codes and themes identified, the perspectives on self-care by Orem were included in the fifth and sixth phases of the analysis (Fig.  1 ). This approach allowed us to get a deeper understanding of the interplay between self-care practices and symptom management in people with MS who do not attend regular follow-up care.

Results

All participants had seen a neurologist at the time of diagnosis but were not receiving regular follow-up care at MS clinics when included in the study. One exception was a participant who had been attending a clinic regularly for the past two years but had gone 20 years prior without follow-up care. This participant was included to provide insights from that extended period without regular follow-ups.

The study included 15 participants with low-attendance, 73% of whom were female. MS onset occurred between 2000 and 2009 for 40% of the group, and 53% had relapsing remitting MS and 47% had progressive MS. 60% were not receiving medical treatment for MS. Physical challenges were common: 53% used canes or walkers, and 14% used wheelchairs. 67% were married, and 73% had adult children. Most participants had medium level education and were on disability pension. The regional distribution of participants was fairly balanced across Denmark (Table  1 ).

Table 1 Characteristics of people with low attendance to clinical follow-up visits in MS Variable Category Frequency Sex Female 73% Male 27% Age 18–49 years 20% 50–64 40% ≥ 65 40% Year of onset < 2000 33% 2000–2009 40% 2010–2019 27% MS type Relapsing remitting 53% Progressive 47% Medical treatment None 60% Yes, symptomatic treatment 33% Yes, MS and symptomatic treatment 7% Physical challenges None 33% Use of supporting aids (cane, walker) 53% Wheelchair 14% Marital status Single/divorced 33% Married/Registered partnership 67% Children Yes, living home or vacated 7% Yes, vacated 73% No 20% Education a Medium education 60% High education 40% Employment Employed fulltime/part time 20% Disability pension b 60% State pension/early retirement pension/back pay b 20% Region Capital Region of Denmark 27% Region Zealand 27% Region of Southern Denmark 27% Central Denmark Region 7% North Denmark Region 13% Personal care No 80% Yes 20% Personal assistance No 53% Yes 47% Healthcare utilization Use of Physiotherapy 60% Use of specialized rehabilitation 67% Use of Psychologist 7% Frequency values are presented as percentage. a Education level based on ISCED (International Standard Classification of Education). Ref: https://www.uvm.dk/uddannelsessystemet/overblik-over-det-danske-uddannelsessystem/det-ordinaere-uddannelsessystem . b Pension Denmark. Ref: https://lifeindenmark.borger.dk/pension . Personal care = help with personal hygiene, getting dressed, getting out of bed, help with eating etc. Personal assistance = help and support for necessary practical tasks such as, cleaning, laundry and grocery shopping etc. Ref: https://lifeindenmark.borger.dk/healthcare/the-danish-healthcare-system/home-care

Characteristics of people with low attendance to clinical follow-up visits in MS

Frequency values are presented as percentage.

a Education level based on ISCED (International Standard Classification of Education). Ref: https://www.uvm.dk/uddannelsessystemet/overblik-over-det-danske-uddannelsessystem/det-ordinaere-uddannelsessystem .

b Pension Denmark. Ref: https://lifeindenmark.borger.dk/pension .

Personal care = help with personal hygiene, getting dressed, getting out of bed, help with eating etc.

Personal assistance = help and support for necessary practical tasks such as, cleaning, laundry and grocery shopping etc.

Ref: https://lifeindenmark.borger.dk/healthcare/the-danish-healthcare-system/home-care

The qualitative analysis revealed two overarching themes, providing insights into the nuanced experiences of people living with MS who do not attend MS clinics (Fig.  2 ).

Schematic depiction of themes and codes

Cognitive and bodily disruption

The first overall theme highlights how participants experienced a fragmented life due to the cognitive and physical impacts of MS, requiring them to adjust and negotiate their self-care strategies. Negotiating physical limitations, cognitive challenges, and emotional well-being became essential to maintain their health and well-being. This negotiation process underscored the dynamic nature of self-care in the context of living with MS and is reflected in these subthemes: Sorrow of a Fading Mind , Avoiding the truth as a Shield , Restoring Well-Being.

Sorrow of a fading mind

Participants expressed difficulties in remembering appointments, important dates, and daily tasks. Lack of concentration made it challenging to stay engaged in tasks or conversations for extended periods, often forcing them to give up. This made it hard to maintain consistency in social interactions, limiting their participation in society and leading to feelings of detachment and uncertainty about their place within it. It was tied to the life they had envisioned, one filled with social interactions with co-workers and holiday gathering at work during e.g. Christmas time. A participant said:

“ But not being a part of society on equal terms with everyone else , that’s frustrating. It is a constant struggle for me. I still haven’t found my place in it .”(3T).

The participants experienced a notable downsizing of various activities of their daily lives, which meant letting go of certain responsibilities and commitments, leading to a sense of what some called ‘a quiet life’. While necessary for their well-being, this reduction in activities often brought a sense of sorrow. This stemmed from participants’ recognition of their compromised cognitive abilities, the lack of necessary support to improve those abilities, and the need for a quieter, more restricted household to manage their condition. Additionally, family members became key sources of support, helping with daily tasks such as planning, purchasing grocery, and cleaning. A participant described it as:

“I think it’s likely that part of me , the trace of my quiet life , not inactive , but quiet , is where the sorrow resides (…) I notice it on my bad days , when I feel sad and get caught up in something negative. It’s tied to the fact that I don’t feel adequately supported on a cognitive level. Physically , I’ve got things under control.” (10T).

Participants’ experiences of self-care in everyday life were intertwined with the need for assistance in basic tasks and characterized as a constant learning process, reflected in terms like ‘learn’, ‘examine’, and ‘understand’. Participants gave insight into how daily self-care routines required flexibility to adapt to MS unpredictability, leading to a fragmented schedule. They had to constantly adjust, finding alternative ways to accomplish tasks, often relying on supportive systems and assisting devices such as pictograms, apps, IT backpacks, structure plans, and advisor guidance. One participant expressed that developing alternative support systems was experienced as a way of resilience that supported their self-care in a positive way and helped remembering things by, for example, writing them down.

”I always write it down because soon something else comes up , or maybe I’m tired at 1 pm on Friday and then I forget because I’m exhausted. So , I’ve created numerous good support systems to cope with that…“ (10T).

Furthermore, participants described how they tended to avoid stressful events and focus on short-term goals that align with their immediate needs, for example, the need for rest during the day. By prioritizing avoidance and adjustments, they actively strived to create an environment that supported their ability to take care of them selves. Participants associated a so-called ‘good’ day with being able - to be able - which meant that they complete everyday tasks or activities such as go for a walk, go to the grocery store or visit a café on their own.

Avoiding the truth as a shield

Participants described feeling the need to shield themselves, sometimes by avoiding the truth, in order to protect their well-being. An example of this could be telling others they were fine, when they were not. This act of shielding, such as by avoiding the truth, became their version of reality, a way of safeguarding themselves:

” Well , what I was about to say was that I have become good at taking care of myself , but that is probably not entirely true , and I don’t even know how good one has to be at taking care of oneself , it depends on who you are , doesn’t it? But I am good at lying. I am good at saying that I’m fine even when I’m not , when I don’t feel like telling anyone. (…) So , the thing about lying , it’s about , well , it’s probably a shield , a shield against constantly wearing the overcoat called multiple sclerosis , but sometimes just taking it off and saying , “Oh , I couldn’t because of something else , ” just because it makes it somewhat easier .”(1T).

By projecting a facade of wellness and sometimes avoiding the truth about their condition, participant protected themselves from unwanted pity or sympathy, thus preserving their sense of agency and self-respect. This behaviour served as a self-caring strategy, allowing them to navigate their daily lives without constantly dwelling on their challenges. However, it also highlighted the complexity of assessing the participants’ self-care requisites. While participants may appear to be managing well on the surface, beneath this facade, lay a delicate balance of needs shaped by their condition, which impacted their ability to engage in self-care and recognize the daily demands necessary for their well-being.

Restoring well-being

Self-care becomes a delicate balancing act, requiring participants to prioritize their energy accordingly throughout the day. On one hand, they must carefully allocate and conserve their energy by prioritizing tasks, pacing themselves, and sometimes making choices that do not align with their well-being.

” Well , I , I was so tired when I came home in the evening , so I could hardly eat , I was completely exhausted , and if I finally managed to eat , I would just sit there and fall asleep afterwards , I would fall asleep before and after meals. And it was always the easy solutions , like pizzas and sandwiches , and it wasn’t very healthy either. And no self-care at all. So I thought , I have to do something about it .”(12T).

On the other hand, they also grapple with the desire to maintain their independence and not burden others with their condition. This aspect can be compared to a form of energy defragmentation, where participants constantly strive to coordinate their energy use and minimize waste. They often face decisions about which activities to pursue, often declining invitations or adjusting social engagements, including appointments with healthcare professionals. Seeking healthcare can be avoided if the benefits don’t outweigh the energy use. It becomes crucial for some to understand that self-care is not selfish but necessary for managing everyday life with symptoms. One participant described it as a continuous balancing act, often performed while operating with limited resources at a deficit, meaning they were constantly managing with less than what was needed to meet their demands. “One does everything on a deficit. Because one has to stay alive .”(1T).

Participants described how they actively seek experiences that enhance their overall well-being and overcome fragmentation, by integrating experiences that lead to a more quality-focused life like: going out in nature, doing ceramics, yoga and writing.

” But but but that’s one of the goals I also have , that I need to find a way to be able to go out and be outside without getting completely exhausted , fatigued. It adds more quality to life , and makes me happier. Well , that’s what I have to do , I love it , I love going out .”(12T).

By not allowing the illness to define their identity, the participants expressed that it gave them the ability to maintain a positive outlook on activities that bring them joy and fulfilment.

Disruption in care pathways

The second theme highlights how factors such as developmental milestones associated with aging and challenges related to health deviation self-care requisites, specific self-care needs arising from illness, affected participants’ ability to manage their self-care. It illustrates how the presence of multiple healthcare providers, and absence of specialized healthcare professionals and symptom management tools, impacted their ability to meet self-care needs and managing their illness and health. The theme is categorized into three subthemes to provide deeper insight: Fragments of supports , A lone pathway in Healthcare and Feelings of dismissal.

Fragments of supports

Participants described receiving reassurance from healthcare professionals, with statements like “ You can always call us “(1T), indicating support if needed. However, they struggled to determine when to seek help for health concerns. Assessing the severity of their MS and determining when it becomes necessary to reach out was difficult. They hesitate to disturb others, sometimes guided by cultural beliefs, ultimately resulting in no contact being made.

“ And it’s also because I think , well , I don’t know , but I think , am I now sick enough to use their time? You can , you can think like that sometimes. (…) So it lies so deep in one. It does for some of us who were brought up with the idea that you don’t call the doctor unless you’re dying .”(15T).

Participants described how they rely on their own observations to monitor any changes or progression in their MS. “ But I can feel when I walk my dog , you get a kind of measure scale because , well , I was able to do this last year , I can’t do that this year ”(4T). Symptoms such as fatigue, cognitive impairments, and pain were particularly challenging for participants to assess due to their invisible nature. While declining muscle strength, reduced cognitive processing, and physical deterioration are common in MS, they can also result from the natural aging process over time. This left participants uncertain whether their condition had progressed due to their MS or aging. Additionally, a participant described challenges in distinguishing between personal variations in MS symptoms and the general MS knowledge. This complexity arose from the overlap between the participants’ own experience of symptoms, and the broader knowledge of the disease’s typical progression and manifestations. The difficulties in assessing the symptoms could result in them being overlooked or dismissed: “ I think that when we walk around in our own , in our own everyday life , we are probably ignoring the things that should be discovered” (2T).

Participants reported positive collaboration with their general practitioners (GP), but some encountered time constraints when discussing MS related concerns. They also noted that limited GP knowledge of MS, affected referrals to specialized rehabilitation. Moreover, participants expressed that it was disheartening when others failed to acknowledge or validate their symptoms. This lack of recognition increased their insecurity and hindered their ability to apply for assistive devices, ultimately impacting their capacity for self-care. Overall, participants faced challenges in seeking support, leading to a fragmented healthcare system mirroring the already fragmented nature of their lives with MS.

A lone pathway in healthcare

Participants disclosed that being proactive in seeking treatment was essential for effectively managing their health. This included a responsibility for seeking information regarding their condition and actively pursuing referrals for therapies. Participants found the quality of information and communication on their MS and treatment to be inadequate, with little opportunity to express their opinions. Additionally, the scheduling of treatment infusions posed challenges for those still working. For some, this ultimately led to the decision not to pursue treatment, impacting their self-care agency by hindering their ability to adhere to medical measures that could improve their well-being: “ They just kept trying to talk about why it had to be that medicine. Yes. Yes. I , I think yes , I didn’t feel they were responsive. ”(13T).

In coping with their MS symptoms, some participants explained how they would turn to alternative remedies as a form of self-medication. They found that these remedies, such as cannabis, helped managing MS symptoms. A participant explained: “ because I know it inhibits my spasticity and I can relax in my body better when I’ve smoked a joint or 2. ”(8T). Other participants described physiotherapy, exercise and healthy nutrition as significant components of their MS management. However, some participants held reservations about the effectiveness of physiotherapy and exercise, which deterred them from utilizing these resources, despite the availability of specialized rehabilitation programs offered by the MS hospitals. The variety of treatment options, ranging from medical therapies to alternative remedies, left participants navigating their choices independently. They expressed a need for clearer guidance and support from healthcare professionals to make informed decisions about their treatment paths.

Feelings of dismissal

Some participants described that being seen by specialized MS health care professionals and receiving disease modifying therapy (DMT) served multiple purposes for them. It offered a sense of control and reassurance, while the visible aspect allowed participants to show others that they were actively engaged in managing their MS. However, in certain situations, some participants described that they chose to decline DMT or were deemed unsuitable for treatment. When they could not receive DMT, they experienced a sense of exclusion from the healthcare system.

“ Yes , I have experienced that as a lot of focus on medicine , or not medicine. And if you don’t want medicine , or are not entitled to the medicine because there are legal requirements to get medicine and so on , then you will no longer be followed , and then you are just alive. ”(10T).

Participants expressed they felt isolated from specialized MS support, believing this limited their future treatment options. They experience that their ‘worth’ as a patient in the healthcare system was determined to by whether they were prescribed DMT. Some perceived this as a sign that their concerns and needs were not taken seriously, leading to feelings of dismissal. They felt they were merely existing, rather than actively improving their health, making effective self-care difficult.

Participants experienced they had to “fit into the box”, as treatment plans generally have specific guidelines or parameters that they were expected to meet or comply with: “ Yes , I have to be in a box because otherwise we can’t figure out what to do with you. If you don’t fit into this box , then , I don’t know what to do with you. All the time .”(3T). Participants expressed frustration that these rigid categorizations did not accommodate their individual circumstances but rather imposed inflexible limitations. For example, one participant recounted receiving fewer physiotherapy sessions because her condition was not deemed severe enough, “ So , I’ve been granted two times a week to be on a team , and that is then cut down , because now we have to be put in categories. So if you’re not ill enough , you don’t get as much help , physiotherapy. ” (15T). When participants felt compelled to fit into predefined categories, it limited their ability to tailor self-care practices to suit their own MS needs if their approaches to self-care differed from the prescribed norms. This limitation was encountered in their exploration of alternative self-care methods that could better suit their individual needs. As a result, their autonomy in self-care decisions was compromised, potentially leading to ineffective or unsustainable routines that did not adequately address their unique MS-related challenges.

Discussion

Overall, our study reveals that people with MS in Denmark who attend MS clinics infrequently, or not at all, experience physical and cognitive limitations that hinder their ability to perform self-care. They struggle to manage their symptoms effectively and feel marginalized within the healthcare system, further limiting their capacity to manage their own care. Addressing these challenges is crucial to enhance support, improve symptom management, and empower them to better manage their own condition.

Previous studies have shown that people with MS experience symptoms across physical, psychological, and social domains [ 10 – 12 ]. Decreased energy levels and mobility hinder their ability to self-care and fulfil familial responsibilities [ 10 ]. In line with these findings, our analysis confirmed the presence of physical and cognitive limitations, impacting people’s abilities to engage in self-care activities. Our study emphasized the considerable challenges faced by people with MS, prompting them to develop alternative strategies to manage symptoms and self-care. Additionally, our research contributes new insights by shedding light on the common approach of conserving and coordinating energy usage to prevent symptom exacerbation. These strategies are crucial to maintaining daily functioning and improving the quality of life.

Self-care in healthcare policy is supported by empirical evidence suggesting its potential to improve patient outcomes and empower patients [ 42 ]. However, critics argue that self-care places excessive emphasis on people’s autonomy and responsibility, often without adequate support, raising concerns about the feasibility of achieving self-care and the possibility of “care left undone” [ 42 ]. Our findings emphasize the need to prevent any potential care left undone, highlighting the significant responsibility placed on participants for their own treatment and self-care management. While some managed their illness effectively, others struggled with the level of autonomy required for effective self-management. Empirical evidence suggests that self-care can be an effective strategy for managing chronic conditions if implemented within a well-resourced self-management policy, ensuring that necessary care is delivered effectively [ 42 ].

Previous studies have identified health care services as the primary area where many needs of people with MS remain unmet. These studies have revealed that people with MS face numerous challenges accessing various health care services, including difficulties in communication with health care professionals [ 43 – 45 ]. Access to follow-up care for people with MS varies depending on diseases progression and treatment type, with those receiving DMT visiting MS specialists regularly [ 46 ]. Our findings highlight that participants felt their worth was tied to their access to DMT, which hindered their ability to adopt personalized self-care approaches, leading to ineffective or unsustainable self-care routines. The absence of specialist involvement makes it difficult to monitor symptoms, offer necessary support for self-care practices, and access rehabilitation benefits [ 46 ].

Self-care deficit theory by Orem

Orem’s Self-care deficit theory emphasizes the importance of individuals ability to perform self-care, which is essential for maintaining integrity, human functioning, and development [ 15 ]. The disruption experienced by the participants can be understood through the lens of the self-care deficit concept, as cognitive and physical impairments limit their ability to take care of themselves. According to Orem, nursing becomes necessary when individuals are limited in their ability to provide effective self-care [ 15 ]. As described by participants in the current analysis, strategies like avoidance, adjustment, and self-protection, are compensatory efforts for self-care deficits. Orem also highlights that self-care agency, the acquired capabilities to engage in self-care, can be influenced by various factors [ 15 ]. Our analysis revealed factors such as physical and cognitive limitations, developmental milestones associated with aging and healthcare deviation influencing the participants’ self-care agency.

The absence of symptom management tools experienced by participants aligns with Orem’s theory, which highlights the role of nursing in supporting individuals to meet their self-care needs when they are incapable of doing so on their own [ 15 ]. Nursing becomes necessary when there is a misbalance between therapeutic self-care demands and an individual’s self-care agency [ 15 ]. Our findings highlights that the participants’ abilities to fulfil self-care needs are impaired by inadequate support and lack of symptom management tools. This creates a limitation in their self-care agency caused by a misbalance between the therapeutic self-care demands and their self-care agency.

Orem’s theory categorizes nursing systems into wholly compensatory, partly compensatory, and supportive/educative systems [ 15 ], representing different levels of support to meet patients self-care requisites [ 15 ]. Our findings describe how participants rely on strategies in the absence of adequate support, suggesting a need for a supportive and educative system where health care professionals can support and empower self-care. However, given the complex mix of physical and cognitive impairments they face, integrating multidisciplinary teams through multisectoral collaboration could offer more comprehensive care, addressing the diverse challenges and needs of people with MS.

Strength and limitations

Thematic Analysis by Braun and Clarke holds several strengths that make it a valuable method for qualitative research [ 26 , 27 ]. It provides a rigorous framework to explore the research aim, data type, and theoretical framework. The analysis process was conducted systematically and rigorously according to the phases of Thematic Analysis, reinforcing the reliability and validity of the findings. It enabled us to uncover patterns and themes that provide a comprehensive understanding of participants’ experiences and perspectives.

A sample size of 15 was assessed to be appropriate to investigate the experiences and subjective perspectives [ 26 , 27 ]. The sample was diverse in terms of sociodemographic characteristics, representing different geographic regions across Denmark, contributing to the breadth of perspectives in the study. Broad variation among participants in qualitative studies brings unique perspectives, experiences, and context to the research, enriching the depth and breadth of the findings [ 47 ]. Allowing for diversity among participants enhances the richness and complexity of qualitative data, leading to more nuanced and comprehensive insights [ 47 ]. The use of NVivo software in managing and coding the data added transparency during analysis, while integration of Orem’s self-care deficit theory facilitated a deeper understanding of self-care behaviours among the population. Additionally, pilot testing of the interview guide improved the validity, reliability, and overall credibility of the findings by ensuring clear, relevant questions, refining the guide for consistency, and enhancing standardization across interviews [ 38 ].

However, the study also has some limitations. The subjective nature of the analysis raises concerns regarding potential bias introduced by the researcher’s interpretations. Preconceptions and prior knowledge can influence the identification and development of themes, impacting the objectivity of the analysis [ 26 , 27 ], highlighting the potential for other interpretations of the findings based on different analytical perspectives. To mitigate these biases, we involved multiple researchers in the analysis process. A purposive sampling strategy was employed, a non-probability sampling, which may limit the generalizability of the findings beyond our sample. We addressed these limitations by using well considered inclusion and exclusion criteria and ensured that the recruitment efforts were made across different settings and regions to capture a broad range of perspectives. Despite the broad variation in the sample, we had no participants with low or no education, making this group underrepresented in our study. The recruitment of participants through a website and an MS hospital could have been less accessible to individuals with lower education which could have led to this underrepresentation. Excluding participants who could not speak Danish might have constrained the diversity of perspectives, particularly among immigrant or minority groups. While virtual interviews offered flexibility, enabling recruitment from various locations, they may have impacted the quality of non-verbal communication. In a face-to-face setting, body language and facial expressions play an important role in understanding emotions, engagement and reactions. Although only a few of the participants had severe MS requiring wheelchair and personal care, their increased disability levels would be expected to impact their levels of self-care and daily activities, which is represented in our sample and should be considered when interpreting the results.

The study was conducted in Denmark, where economic factors and insurance don’t influence access to treatment, as healthcare is universally available and free of charge. Therefore, the findings may differ in contexts where these factors play a role. Nonetheless, we believe that countries with healthcare systems similar to Denmark will find the findings relevant.

To our knowledge, this is the first study to qualitatively explore self-care abilities of people with MS who do not attend specialized treatment at MS clinics. This knowledge can contribute to more effective ways of supporting people with MS who require supportive and non-pharmacological treatment and care. The findings provide additional evidence to develop and promote support and self-care practices among people MS.

Conclusion

People with MS in Denmark who attend MS clinics infrequently or not at all bear the burden of both physical and cognitive limitations, which impact their self-care abilities. These challenges are common among the MS population. However, the participants’ experiences is characterized by inadequate symptom management tools, feeling undervalued within the healthcare system, and lack of recognition of their symptoms and diseases progression, all of which hinder their ability to effectively manage their health, self-care, and life with MS. They face difficulties in assessing disease progression, evaluating the severity of their symptoms, and determining when to seek necessary help and support. These findings underscore the critical role of healthcare providers in assisting people with MS in managing their condition effectively. The predominant focus on disease care in healthcare, encompassing physical, pathological, and medical aspects, leaves them feeling isolated in their illness experiences. As a result, the responsibility for self-care and managing everyday life with MS becomes individualized, led primarily by people themselves.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Supplementary Material 1

Acknowledgements

We sincerely thank all of the participants for generously sharing their time, experiences and insights. Their invaluable contributions have been essential, and we deeply appreciate their willingness to engage in this study.

Abbreviations

Multiple Sclerosis

World Health Organization

Consolidated Criteria for Reporting Qualitative Studies

Disease modifying therapy

General practitioner

Author contributions

AB contributed to the study’s design and objectives, wrote the protocol, handled participant recruitment, conducted and transcribed the interviews, performed the analysis, and drafted the manuscript. SGR assisted with revising codes, themes, and analysis, and supported the translation of quotes. CS contributed to the revision of codes, themes, and analysis. EML assisted with revising the initial coding and critically reviewed the manuscript. LS contributed to the study design and objectives, participant recruitment, revising the initial coding, and critically reviewed the manuscript. MD participated in revising the initial coding and critically reviewed the manuscript. MB contributed to the design and objectives, revised codes, themes, and analysis, and critically reviewed the manuscript. All authors read and approved the final manuscript.

Funding

Open access funding provided by Copenhagen University.

The study was initiated by the Department of Neurology, Zealand University hospital, Denmark, and supported by grants from the Multiple Sclerosis comprehensive plan by The Danish ministry of Health. The sponsor of the study is a public nonprofit organization and had no role in the study’s design, conduct, or reporting.

Data availability

The dataset generated and analysed during the current study are not publicly available because the interviews contain sensitive information that could compromise participant anonymity. However, the quantitative data and Thematic framework can be obtained from the corresponding author upon reasonable request.

Declarations

Ethics approval and consent to participate

This study is part of a larger research project that was reported to the National Committee on Health Research Ethics. According to Danish regulations, it was determined that no formal approval was required (SJ-971 (anm.nr. 88070) EMN-2022-00118). The study was reported to and approved by the institutional review board at Zealand University Hospital (Data and Development support, Research inventory, REG-160-2021) and conducted in accordance with relevant guidelines and regulations. Informed consent was obtained and signed by all participants prior to the conduct of interviews and data collection.

Consent for publication

Not applicable.

Competing interests

Dr. Dahl has consultancies with Chiesi, Takeda, and Grifols. The other authors declare that they have no competing interest.

Footnotes

Publisher’s note

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References

Associated Data

Supplementary Materials

Supplementary Material 1

Data Availability Statement

The dataset generated and analysed during the current study are not publicly available because the interviews contain sensitive information that could compromise participant anonymity. However, the quantitative data and Thematic framework can be obtained from the corresponding author upon reasonable request.