Finding your way to normal life: experiences of young and middle-aged adults with multimorbidity and complex chronic conditions – a qualitative study

Abstract

Objectives

This study aimed to explore how young and middle-aged adults (aged 18–65 years) with multimorbidity and complex chronic conditions experience hospitalisation and the transition home.

Design

In this qualitative study, semi-structured interviews were conducted. Data from the interviews were analysed using reflexive thematic analysis following Braun and Clarke (2022).

Setting

Two university hospitals in Switzerland (March to July 2024).

Participants

16 young and middle-aged adults with multimorbidity and complex chronic conditions from two university hospitals in Switzerland were selected as interview participants to gain an understanding of the experience of young and middle-aged adults with multimorbidity and complex chronic conditions within the hospital and on transition home.

Results

Analysis of the interviews revealed four main themes that describe the experiences of younger and middle-aged adults with multimorbidity and complex chronic conditions during and after hospitalisation: experiences on a (1) physical, (2) emotional and psychological, as well as on a (3) social level and (4) the constant tension within the lived experience of illness; this constant tension in turn influenced the experiences of this patient group on a physical, emotional, psychological and social level. Conversely, these three levels influenced both the positive and negative experience of illness and the positive and negative anticipation surrounding it.

Conclusions

The study’s findings confirm that this patient group requires integrated care, a care model that goes beyond the disease-centred comorbidity perspective of previous care models that supports coordinated proactive care by an interprofessional core team and a central coordinator and that operates within and between the different health sectors. Advanced practice nurses are particularly well-suited for a leading role within integrated care models due to their advanced nursing skills and knowledge. These results could serve as an important basis for this specific role design. The results of this study also confirm that this patient group requires a complex, holistic and person-centred approach to care to have the opportunity to return to a normal life despite massive limitations. Mental health plays a central role, as it is an important influencing factor that should be given special attention during treatment. It is essential for healthcare systems and medical professionals to understand the burden of diseases in the context of physical, financial, family and social circumstances. Further research into the experiences of young and middle-aged adults with multimorbidity and complex chronic conditions is recommended.

STRENGTHS AND LIMITATIONS OF THIS STUDY.

• The qualitative approach has been shown to be a highly effective method of capturing the experiences and perspectives of those directly affected by the phenomena under study, while considering the participants’ subjective experiences in reasonable depth.

• The study was conducted in Switzerland and therefore reflects the context of the Swiss healthcare system, which may affect the transferability of the results to other healthcare systems.

• The participants in this study predominantly have cardiological and neurological diseases, which may limit the generalisability of the results to patients with other chronic diseases and thus underlines the need for further research in this area.

Introduction

Multimorbidity and complex chronic conditions pose significant and growing challenges for Europe’s healthcare systems, currently affecting approximately 50 million individuals.¹ While traditionally associated with older adults, multimorbidity also impacts a substantial number of young and middle-aged individuals.^2–5 International research suggests that up to 50% of adults in these age groups already experience multimorbidity and complex chronic conditions,^2–7 which is why health services should increasingly focus on the treatment and care needs of younger and middle-aged adults.⁷ According to the Swiss Health Observatory, 22% of the Swiss population over the age of 50 years is affected by multimorbidity.⁸ More than 40% of the Swiss population over the age of 55 years suffers from two or more chronic diseases, including cardiovascular diseases, rheumatic diseases, Chronic Obstructive Pulmonary Disease and asthma, metabolic diseases such as diabetes mellitus, cancer and Parkinson’s disease.^{9 10} These diseases are currently among the most resource- and cost-intensive diseases in the Swiss healthcare system.¹¹ The number of people with multimorbidity and complex chronic diseases is expected to increase significantly in the coming decades.^{11 12}

Adults of all ages with multimorbidity and complex conditions place a significantly greater burden on healthcare systems¹³ and face a substantially higher risk of adverse health outcomes compared with those with one or no chronic conditions.¹⁴ These adverse outcomes include increased hospital readmissions, longer hospital stays,^{4 15–17} greater healthcare utilisation^{13 18} and more frequent physician visits and outpatient appointments.^{15 17} Additionally, multimorbidity is associated with reduced life expectancy,¹⁹ lower health-related quality of life,^19–22 heightened psychological distress,²¹ mental health disorders,^{2 23 24} impaired functional abilities,²⁴ premature mortality²⁵ and difficulty managing the treatment burdens of multiple conditions.^{13 26–28} Furthermore, individuals with multimorbidity often experience fragmented care,²⁹ insufficiently tailored clinical guidelines,³⁰ poor care coordination¹⁹ and conflicting treatment recommendations.^{2 30–32}

The complex care needs of patients with multimorbidity require them to navigate and manage multiple transitions across diverse healthcare settings, alongside coordinating fragmented specialist appointments.³³ Simultaneously, they must balance these demands with everyday life priorities and individual resources.^{34 35} The management of chronic conditions in daily life underscores the necessity of patient-centred care that is both comprehensive and responsive to the heterogeneous needs of this population. Furthermore, incorporating a psychological component into the care of individuals with multimorbidity is strongly recommended as part of a collaborative interprofessional approach.³⁶ The management of multimorbidity often entails polypharmacy, which presents a significant burden for patients who must adhere to intricate medication regimens while striving for optimal therapeutic outcomes.³⁷ In addition to the complexities of medication adherence, patients must also contend with the adverse effects and risks associated with drug–drug and drug–disease interactions.^{5 19 38 39} Moreover, they face lower employment rates and diminished work productivity, further exacerbating the socioeconomic challenges associated with their health conditions.⁴⁰

The care needs of younger and middle-aged adults (aged 18–65 years)⁴¹ with multimorbidity differ significantly from those of older adults due to their more complex life circumstances. They often juggle professional responsibilities, career advancement and caregiving duties for minor children or ageing parents.^{42 43} Beyond their medical needs, these individuals experience a significant burden of care that often disrupts their professional lives, family responsibilities and leisure time.^44–46 Managing multimorbidity requires effective self-management, which involves proactively adopting behaviours to maintain health while navigating the physical, psychological and social effects of multiple chronic conditions.⁴⁷ Although multimorbidity also affects young and middle-aged adults, research on their experiences remains limited.^2–7 Duguay et al²¹ identified key challenges for individuals with multimorbidity, including perceptions of premature ageing, difficulties with self-care management and barriers to accessing healthcare, all of which contribute to the complexity of their condition. Despite these obstacles, many patients actively strive to regain control and adapt to daily life.²¹ A systematic review by González-González et al found that middle-aged adults with multimorbidity experience greater impairments in overall, physical and psychosocial functioning, along with lower employment rates and reduced work productivity compared with those without multimorbidity.⁴⁰ Research increasingly highlights that existing care models fail to meet the needs of both patients and healthcare providers in managing multimorbidity and complex chronic conditions among younger adults.^48–51 Particularly after an acute hospital stay, care coordination must extend beyond hospital discharge, ensuring continuity of care through outpatient services.⁵²

The Swiss healthcare system is also primarily geared towards acute care and not towards the care of people with chronic illnesses. These traditionally disease-specific approaches in current healthcare lead to inadequate and fragmented care for multimorbid and complex chronically ill patients.⁵³ To address the challenges, new integrated care models are essential that are oriented towards patient benefit and adapted to the needs of patients, so that follow-up care for patients after a hospital stay is made possible.^{33 54} These models should support self-management and take a holistic, person-centred approach, tailored to individuals’ needs, abilities and preferences.⁵⁴

Currently, there is no integrated care model in Switzerland for the hospital setting to treat young and middle-aged adults with multimorbidity and complex chronic diseases. To develop an appropriate integrated care model for this patient group in Switzerland, this study aimed to capture the perspectives of the affected patients. This article presents the findings of a qualitative study examining the experiences of young and middle-aged adults with multimorbidity and complex chronic conditions in hospital settings in Switzerland, with a particular focus on the transition from hospital to home. The research question guiding this study was: ‘What is the experience of inpatient stays in hospitals and on transition to home by adults of young and middle age with multimorbidity and complex chronic conditions?’

Methods

Design

To gain insight into the experiences of young and middle-aged adults with multimorbidity and complex chronic conditions, a qualitative research design was chosen. Qualitative methodologies are particularly well-suited for exploring individuals’ experiences.^{55 56} Therefore, semi-structured interviews were conducted with young and middle-aged adults living with multimorbidity and complex chronic conditions. The interviews were digitally recorded, transcribed verbatim, and analysed using reflexive thematic analysis. The reporting of this study is guided by the Standards for Reporting Qualitative Research (SRQR).⁵⁷

Participants

The study was conducted in Switzerland among young and middle-aged adults living with multimorbidity and complex chronic conditions. Participants were identified through purposive sampling, and individuals meeting the following inclusion criteria were invited to participate in the study: men and women aged between 18 and 64 years with multimorbidity (more than two chronic illnesses) and complex chronic conditions. Individuals ≥65 years and older and those with moderate-to-severe cognitive impairment, decompensated psychiatric disorders, or those unable to communicate were excluded from the study. To recruit participants, we collaborated with two university hospitals.

Data collection

Participant recruitment was conducted as follows. At one university hospital, recruitment was conducted through an advanced practice nurse (APN) who served as the initial point of contact. Patients meeting the inclusion and exclusion criteria were approached by the APN and, if they expressed interest, were referred to the study’s first author. The nature of the qualitative study was then explained, and written informed consent was subsequently obtained by the first author. At the other university hospital, patients who met the inclusion and exclusion criteria were approached and recruited directly by the first author of the study. The nature of the qualitative study was explained, and both the provision of participant information and the process of obtaining written informed consent were likewise carried out by the first author. Study participants were selected based on the following inclusion criteria: men and women aged 18 to 64 years with multimorbidity (more than two chronic illnesses) and complex chronic illnesses. Individuals aged 65 and older, as well as those with moderate to severe cognitive impairment, decompensated psychiatric disorders, or communication difficulties, were excluded. Preparation for an interview and sufficient German language skills were prerequisites for study participation. Participants did not receive any financial compensation or other form of remuneration for their participation in the study.

Data collection occurred from March to July 2024. The interviews were structured around open-ended questions, beginning with the following inquiry: ‘Could you tell me how you’ve been feeling since leaving the hospital?’ Questions concerned their experience of the care delivered within the hospital, at discharge and at home. ‘What does it mean for you to live with your condition?’, ‘What feelings do you experience when you have to live with multiple illnesses simultaneously?’, ‘What kind of limitations arise from your chronic conditions and what do these limitations mean for you?’, ‘How did you experience the medical and nursing care in the hospital?’, ‘How did you perceive the medical and nursing care regarding the planning of your discharge home?’, ‘What fears and concerns did you have regarding your discharge?’, ‘What do you think could be improved after your discharge home?’. The interviews were digitally recorded and transcribed verbatim. A standardised questionnaire was used to collect sociodemographic information, such as age, nationality, reason for admission and diagnoses. The duration of the interviews ranged from 20 to 45 min. During data collection, an open and exploratory approach was prioritised; consequently, open-ended questions were employed to elicit participants’ narratives of their lived experiences. Data collection was conducted until code saturation was reached, defined as the point at which no new codes were identified. Additionally, meaning saturation was assessed, indicating that no new nuances of meaning emerged within the existing topics. After the fourteenth interview, no new codes were generated; nevertheless, two additional interviews were conducted to further confirm the robustness of the findings. Data collection was completed after a total of 16 interviews.

Data analysis

Interviews were analysed employing reflexive thematic analysis as outlined by Braun and Clarke.⁵⁸ The process adhered to the six-step framework,⁵⁸ implemented in accordance with the qualitative analysis procedure: (1) The transcripts were meticulously reviewed multiple times to ensure thorough familiarisation with the dataset. (2) The interviews were systematically coded, with key phrases and sentences being highlighted line by line. At the conclusion of this phase, corresponding codes were consolidated, leading to the generation of initial codes. The resulting codes were subsequently compared, and any discrepancies were deliberated and resolved. (3) The compiled list of codes was structured into potential themes and patterns, which were subsequently visualised through a mind map. (4) A research team comprising six members—two authors (GB and HM) and scientists who were not involved in the process of data collection and analysis—engaged in an extensive discussion to refine and validate the emerging themes and patterns derived from the mind map. (5) These themes were systematically reorganised and critically assessed by revisiting the original quotations. Thereafter, the themes were distinctly defined and labelled. (6) A final comprehensive analysis of the data MAXQDA 24 was used to organise the data. In the data analysis, an inductive approach was adopted—codes and categories were derived directly from the data rather than being deduced from a theoretical framework. The evaluation process was deeply reflective, with the first author actively engaging in the research discourse through peer debriefing. This process was particularly valuable during data analysis, enabling careful reflection on the first author’s positionality. To enhance the credibility and trustworthiness of our data analysis, we conducted peer debriefing.⁵⁹ This included regular meetings, discussions and critical reflections with researchers who were not directly involved in the study. It is also important to note that this article forms part of a broader doctoral dissertation project, within which multiple perspectives are being systematically triangulated.

Rigour

This study adhered to key quality criteria for qualitative research, namely credibility, dependability, transferability and confirmability.⁶⁰ Credibility and dependability were ensured by leveraging the researchers’ personal experiences in both academic research and professional practice, as well as by consulting individuals external to the study to identify any overlooked themes. Additionally, all 16 transcripts were independently coded by two researchers to enhance credibility. To ensure transferability, a detailed account of the participants, research setting and recruitment process was provided. Confirmability was reinforced through the use of verbatim transcripts and the involvement of individuals who were not directly engaged in the study. Overall, rigour and trustworthiness were ensured through this careful and ongoing process of peer debriefing.

Patient and public involvement

None.

Results

A total of 16 participants (8 women and 8 men) aged between 34 and 64 (mean age 49) took part in the study. The reasons for hospitalisation among the main participants were neurological problems such as stroke, cerebral haemorrhage, multiple sclerosis, epilepsy and early-onset Parkinson’s disease; cardiological problems such as acute heart failure and high blood pressure; and surgeries such as thyroid surgery and heart transplants. The medical diagnoses and chronic conditions included cardiological, neurological, metabolic, oncological, musculoskeletal, congenital and general medical diagnoses in all participants, as well as psychosocial components in 14 of the 16 participants. At the time of the interview, one participant was on sick leave, one participant was working, although in a different job, two participants were in the process of reintegrating into their previous job, with one of the participants working reduced hours, four participants were not working and seven participants received officially an invalidity pension. Further patient characteristics are shown in table 1.

Table 1. Participant characteristics.

	Participants (N=16)
Age (years)
Mean	49
Range	34–64
Sex
Female	8
Male	8
Reason for admission to hospital
Cardiology	2
Neurology	13
Surgery	1
Medical diagnosis and chronic conditions
Cardiology	11
Neurology	13
Metabolic	7
Oncology	2
Medical in general	3
Congenital	1
Musculoskeletal	2
Psychosocial components
Diagnosis of depression/medications/psychotherapy	14

The data showed that the experience of younger and middle-aged adults with multimorbidity and complex chronic conditions during and after hospitalisation can be represented in three dimensions: experiences on a physical level, experiences on an emotional and psychological level and experiences on a social level. The four main themes and subthemes are presented in table 2.

Table 2. Themes and subthemes.

Themes	Subthemes
Experiences on a physical level	Physical limitations Impaired concentration and memory deficits Reduced performance capacity Exhaustion and tiredness Pain Sleep disorders
Experiences on an emotional and psychological level	Fears Worries Helplessness, despair and worthlessness Overwhelm Uncertainty Depressive symptoms
Experiences on a social level	Changes in family situation Changes in professional situation Realignment of priorities and needs Loss of autonomy and independence Loneliness and being alone Withdrawal from social life Lack of support
Constant field of tension within lived experience	Positive experience of illness Stable clinical picture Progress and improvement Regaining independence Positive anticipation Optimism Hope and confidence Integration of illness and fear into life Willpower Resilience Setting and achieving goals Being combative Beliefs and spirituality Negative experience of illness Unstable clinical picture Confrontation with a new illness Stagnation of the recovery process Negative anticipation Displacement Self-pity and loss of perspectives Assignment of blame

These dimensions of experience are intertwined. Furthermore, those affected generally live in a constant state of tension within the lived experience of illness between positive experience of illness and positive anticipation and negative experience of illness and negative anticipation. These have an influence on the experience of this patient group on the physical, emotional and psychological level and on the social level and, conversely, these three levels have an influence on the positive or negative experience of illness as well as the positive and negative anticipation of the experience of illness. An illustration of the dynamic is shown in figure 1.

Figure 1. Constant field of tension of the experience of illness.

Experiences on a physical level

Physical limitations

The participants’ experiences on a physical level were marked by physical limitations that varied in type and severity: these included loss of control over the extremities, hemiparesis and restricted movement to the point of immobility, spasticity, tremors, imbalance disorders, sensory impairments in the extremities, visual and speech disorders as well as loss of fitness and physical weakness. Depending on their clinical condition, these physical limitations were particularly pronounced in the acute phase and even led to complete dependence on care: “In the beginning, I couldn’t walk. I couldn’t hold anything, I couldn’t eat” (P 10). These physical limitations persisted in most participants even after they were discharged home. These manifested themselves in limited mobility due to existing hemiparesis and spasticity, as well as signs of heart failure. Pain, loss of sensation and a lack of control in and over the extremities were also cited by participants as reasons for their physical limitations. For the majority of participants, physical limitations improved during the postacute phase at home: “As far as my body is concerned, a lot has improved, it’s still not what it used to be, but I can walk again, I can use my eyes again, I’m also a bit limited, but my speech is completely back” (P 16). There were also participants who, more than a year after the acute event, continued to complain of severe limitations in their ability to walk and were only able to walk very short distances with walking sticks. One participant showed a deterioration in mobility due to a diagnosis of multiple sclerosis. The majority of participants reported limitations in activities of daily living, ranging in severity from mild to severe. Limitations were reported in personal hygiene and dressing. The participants also reported limitations in preparing meals. Food had to be organised and prepared by family or friends or ordered from supermarkets or restaurants because physical limitations prevented these activities and were considered too strenuous. Coping with everyday life was described as exhausting and difficult. One participant described that she had the will to cope with everyday life, but that her body would not cooperate. The limitations in everyday life were described by the majority of participants as varying, as good and bad days that were not the same every day: “I have good days and I have slightly worse days. On the good day I don’t actually notice very much (…) I live on the 4th floor without an elevator, for example, and I notice things like that especially on the perhaps less good days, even if it is a restriction that remains” (P 1). Only one participant was still able to engage in sporting activities, although at a significantly lower level of performance. For the majority of participants, this meant that, due to their physical limitations, they would never be able to return to their sporting activities and would no longer be able to engage in sports such as soccer, martial arts or jogging for miles. Some participants also reported physical limitations due to visual impairments caused by double vision and visual field restrictions, which lead to limitations in everyday life and make everyday life a challenge. These participants had to be particularly careful on public transport, but also when moving around and carrying out everyday activities.

Impaired concentration and memory deficits

Several of the participants continue to suffer from concentration and attention disorders after the acute incident, which last for weeks or months and are described by those affected as follows: “I just notice that I can’t concentrate (…) The problem is simply concentration. I can’t concentrate on anything for long, for example, I can’t even read a book, I can’t take it in anymore. What did I just read? I have to read it two or three times” (P 3). The participants also reported memory problems, disorientation and word-finding difficulties months after the acute event. When it comes to memory problems, the participants affected mention short-term memory as the area affected. This memory deficit is perceived as a personal change: “When people ask me what has changed, I can say that my short-term memory is problematic” (P 12). One of the participants described that he had word-finding difficulties and that, although rarely, he could not orientate himself: “I have problems with words, I need time to find them (…) it takes time to find the word I want to say (…) and a few times (…) I didn’t know where I am” (P 6).

Reduced performance capacity

The majority of participants also reported a decline in performance that manifested itself in everyday life: “I prepare everything myself and slowly, but it’s not the same pace as before” (P 5). This decline in performance capacity was described by the participants as unsatisfactory and, like this participant, something that bothered them: “The work that I used to do in addition to my job now takes me a whole day, and I have to take breaks again and again. This situation really bothers me, and I am very impatient with myself, a very impatient person, and unfortunately, I am extremely affected by the fact that I am simply no longer able to perform” (Interview 16, pos. 17). This reduction in performance capacity was perceived as psychologically burdensome by the participants: “You simply notice that the body can no longer perform what it has always performed before, and that is of course also a psychological shock (…) that certainly brings with it enormous burdens, that’s for sure” (P 1).

Exhaustion and tiredness

A quarter of participants also described exhaustion and tiredness in everyday life as a physical experience: “It’s very strenuous for me; I’m just quite exhausted” (P 13). Participants described feeling drained and tired throughout the day and regarded these symptoms as burdensome: “I get tired so quickly, and that goes against my nature. And that makes it extremely difficult for me” (P 16). This exhaustion causes one of the participants to feel uncertain as to whether the reason for her exhaustion is due to the thyroid surgery or whether the reason is renewed cardiac decompensation: “I’ve been struggling quite a bit since the surgery just under a month ago, on March 14. I’m so exhausted. I also notice that sometimes I don’t know where it’s coming from” (P 2).

Pain

Some participants reported chronic pain that they experienced as a burden. One participant reported neurological pain on the side affected by hemiparesis, in the hand and knee, which was one of his main problems, especially after he was discharged home: “I had to cope with the pain, that was me, I couldn’t do it, there were moments when I said I couldn’t take it anymore” (P 10). Headaches were also reported in connection with concentration by participants: “I just notice that when I concentrate, I get a lot of headaches” (P 3). The statement by this participant, who was inadequately treated with painkillers as a precautionary measure even though this problem was already known before the operation, showed that pain can also be a significant problem in complex chronic conditions: “Before the operation was planned, I discussed this with my doctor. I was told I didn’t need to worry about the pain, but then the time came and I had to suffer anyway. So basically, I always have to go through something before they give me pain medication. They’re afraid I’ll become addicted” (P 2).

Sleep disorders

More than half of the participants reported sleep disturbances during their acute hospital stay: “I hardly slept at all during my hospital stay, or at least very little” (P 16). These disturbances persisted for most even after their discharge home: “I thought that when I went home, I would be able to sleep peacefully, but that didn’t have a positive effect. It remained the same. It wasn’t the hospital’s fault; it didn’t get any better at home” (P 6). The main reasons given for the sleep disturbances were worries and fears. Worries about recovery, when the body would return to normal functioning, but also sleep disturbances due to financial worries and fears about the future. Those affected also cited brooding at night about what had led to the acute event as a reason for their sleep disturbances: “I can’t sleep at night (…) what happened and what will happen next (…) and then there are worries about when my body will be completely normal again (…) and other worries too” (P 6).

Experiences on an emotional and psychological level

Fears

The participants’ experiences are characterised by a high degree of psychosocial burden, and emotional and psychological stress. They report experiencing pronounced and varied fears during their hospital stay, but also after being discharged home. The experience of the sudden onset of the disease, the acute event in the hospital, is described as dramatic and as an extreme situation, a kind of shock event that pulls the rug out from under one’s feet: “Am I going to die now? What happened to me? I wasn’t like this before. What happened? God, I want to get well. I don’t want to die” (P 11). Five of the sixteen participants experienced these extreme situations several times, triggered by cardiac decompensation, the recurrence of malignant tumours, and rheumatic disease. The acute experience of the event was also described as dramatic, as in the case of this participant, who was only willing to talk about it after several months: “I was fully conscious the whole time (…) I think I would have felt 100 times better if I had been away (…) I was in the garden (…) screwing together the parts of a small piece of furniture when suddenly the screws fell out of my hand. That’s when I realised I couldn’t get up anymore. And then I realised that I couldn’t speak anymore, that saliva was running down my face (…) Yes, I can talk about it now, but that’s also thanks to the medication, otherwise I wouldn’t have wanted to” (P 16). A quarter of the participants reported amnesia during the acute phase in the hospital and that they could not remember anything. This experience was also characterised by existential fears—professionally, financially, but also privately, due to the change in the patient’s life situation, as they are usually confronted with this in hospital: “I mean, a piece of ground has been broken away, that’s clear. What’s going to happen with the professional situation, financial situation and so on, this thing for sure, right” (P 1). Participants reported fears about the future triggered by the acute event, but also by new illnesses and uncertainty about the diagnosis that may arise in the course of their lives in both phases—the acute phase and the post-acute phase—participants describe the fear of a new, recurring event, especially in the acute phase, as omnipresent, something they have already experienced. Even after being discharged, these fears caused some participants to feel extremely uncertain when symptoms arose and to try to interpret them. The fear of leaving the hospital and going home was mentioned by the majority of participants, the fear of coping alone in everyday life, but also the fear of pain and physical limitations. The fear of being home alone was also mentioned by participants who lived alone or were home alone during the day. Two of the participants expressed fears about ageing, which they also described as an emotional experience, particularly when they were cared for together in institutions or groups for older people. Fears of losing autonomy, becoming dependent on care, and losing independence and self-determination were also mentioned by a large number of participants. One participant also mentioned her fear of having to leave her child behind and dying, which would result in her daughter suffering the same fate as her, was cited as a major emotional burden.

Worries

During their hospital stay, but especially after discharge, the participants mainly reported family concerns, particularly regarding the care and provision for their children, how this could be arranged, and concerns about how the child would cope with their illness and the associated physical changes in their father or mother. One of the participants reported that his young son had witnessed the acute event directly and that this had been a traumatic experience for the child, triggering fears and loss of speech: “My son is anxious. No wonder. (…) It happened at home. (…). He spoke his first word again after 6–7 months, his first word” (P 4). One mother’s concern and care for her child went so far that caring for her child took priority over her own recovery. She wanted to enable her daughter to go to school and have as normal a life as possible. Concerns about the children were also evident in the fact that the participants affected, such as this mother, saw themselves as a burden on their two daughters and felt guilty because their daughters were missing out at school due to their illnesses: “The situation was terrible for me and, of course, I was afraid for my two daughters (…) they were at school, so they missed a lot again, and that was also the guilty conscience I had” (P 9). Almost half of the participants report professional concerns, fearing that, due to their physical limitations and existing partial disability, they will not be able to find a new employer who will hire them in their previous profession: “Every employer I’ve been in touch with (…) asks about your health and then says to the employer (…) I can’t take that risk (…) because it’s way too risky to hire a 50-year-old guy who can work 50% of the time but has an illness that’s hard to predict how it’ll develop over the next few years” (P 1). Some participants mentioned concerns about their physical condition and how their recovery would progress. One-third of participants reported financial worries due to job loss, lack of information about support services, and lack of financial support. Participants who were self-employed were particularly affected by the loss of their self-employment, which in some cases led to financial hardship and the need to apply for social assistance.

Helplessness, despair and worthlessness

The participants’ experiences are marked by helplessness and despair, both during the acute event and in everyday life: “Well, it was a feeling, very, very terrible, this helplessness” (P 16). This helplessness, despair and lack of understanding are also evident among the participants at home: “Oh, despair, also lack of understanding, you feel that others don’t understand you or that no one can put themselves in your shoes. Sometimes the partner you live with every day feels that medication or certain treatments, operations, and so on are a solution to everything and that you can then function again, which is partly what you think and hope, or in the case of a heart transplant. Many people say, yes, it’s a second life, but it’s not 100% like that” (P 2). For a few participants, this hopelessness and despair went so far that there were moments in their lives when they were on the verge of giving up. A few participants also mentioned feeling worthless in society due to their lack of productivity: “Yes, I think our system no longer needs me” (P 10).

Overwhelm

Half of the participants reported feeling overwhelmed by the acute event, by everyday life after returning home, and also by events in the hospital that are part of a standard hospital stay. One participant reported feeling severely overwhelmed during the acute phase in the hospital, where she was confronted with applying for disability benefits: “I was in this stroke ward (…) for four or five days, in a state of complete immobility (…) I was confronted with the urgent need to apply for disability benefits. And things like that had an additional impact on me, they were like a real blow” (P 16). The participants reported that they felt overwhelmed in everyday life, coping with everyday events, but also due to persistent pain: “It was really exhausting. I had to cope with the pain, that was me, I couldn’t do it, there were moments when I said I couldn’t take it anymore” (P 10). This feeling of being overwhelmed was still noticeable among the participants 1 year after the acute event: “It’s just very exhausting for me, I’m pretty exhausted (…) Everyday life is simply a challenge. Takes a lot of energy” (P 13).

Uncertainty

Uncertainty associated with the disease regarding how it will progress and what participants can expect in the future, as well as uncertainty and ambiguity about the diagnosis, were cited as additional emotional and psychological burdens. One participant felt particularly burdened by the uncertainty about how the newly diagnosed rheumatic disease would progress, but uncertainty due to a lack of knowledge and ignorance about the truth about the disease was also mentioned by participants as an emotional burden. The participants also mentioned feeling uncertain due to their fluctuating and unstable physical condition, which changes within days: “If I compare how, it was two days ago and how it is now, then I can tell you that I feel pretty bad today because it’s really not a stable condition, it comes in waves. It’s like dancing tango, two steps forward, one step back, and then the other way around” (P 5). A third of the participants also mentioned experiencing uncertainty due to a lack of ability to assess and classify physical symptoms, as in the case of this participant: “I’m so exhausted (…) I don’t know what’s causing it (…) when so many things are affected. Now I’m wondering if my heart has deteriorated again. Or what’s wrong with my body?” (P 2). Uncertainty regarding memory function was mentioned by participants as another issue, as in the case of this participant: “When it comes to memory, I have to say that I am sometimes a little uncertain. And yes, uncertainty. But that happens too. When I talk to them, I feel that I’m actually quite normal, but I’m not spoken to enough, not even at home” (P 9).

Depressive symptoms

During the interview, a large number of participants reported symptoms of depression, and extreme mood swings as emotional experiences. Six of the participants stated that they were taking antidepressants, and fourteen of the sixteen participants were undergoing psychotherapy at the time of the interviews. The medication treatment and psychotherapy began during their acute stay in hospital and was then continued on an outpatient basis, as in the case of this participant, who exhibited depressive symptoms during her acute stay: “She asked about my daughter (…) at that moment I couldn’t answer (…) I couldn’t think of what job she had (…) and then I was done, I cried so loudly and then she asked me if I needed medication. I said no, I didn’t want any, but later I realised (…) that I also have medication for depression (…), I got it in the hospital” (P 15). Since the psychological stress on the participants was high due to the acute event, they needed support from psychological services in order to process and accept their current situation. One of the participants mentioned that due to the severe psychosocial stress she had experienced over a long period of time, she would need antidepressant therapy for a long time, if not for the rest of her life: “Yes, I’m taking some now, and I’ll probably always need it (…) I have an antidepressant. Yes, and before that, nothing really” (P 16). One of the participants, that also reported depressive symptoms that made inpatient follow-up treatment necessary: “I had inpatient rehab because of my psyche” (P 3).

Experiences on a social level

The social experience of all participants was characterised by a change in life circumstances—a change in the family situation, the professional situation—but also in some cases a reorientation of priorities and needs, a loss of autonomy and independence such as the experience of loneliness and being alone, a withdrawal from social life and a lack of support. All participants reported that a radical change had taken place in their lives due to the acute event and the associated severe functional limitations or the progression of the illness.

Changes in family situation

For most of the participants, changes in family situation were characterised by the fact that a great deal of support from family—spouse, parents, children, siblings—but also friends was necessary. Within the family, support was provided in the sense that they took over the household, sometimes helped with personal hygiene, as a driving service or also took her to hospital appointments or medical appointments together. Participants also reported receiving support with financial and administrative matters. However, these changes in the participants’ life situations also led to strain on the family situation and to an overburdening of relatives, which in turn led to tensions and problems within the family. A change in the family situation was also evident in the fears of the children, who had to cope with the situation and their support went so far that the participants felt overprotected and monitored: “It was still difficult because I was (…) so protected by my sons that I didn’t even know what it was like to be alone (…) I then had to put the brakes on with my children and my environment (…) I don’t need hourly surveillance, because that was really what was demanded on the phone. Well, my youngest son would like to have the whole house fitted with video cameras somehow” (P 6). However, some of the participants also emphasise, as in this example, that there is a desire for independence: “My family helps me a lot, but I also want to become independent again” (P 15). The majority of participants spoke out in favour of consideration for the resilience of relatives, as in the case of this single participant with her two adult daughters, who are both studying and who had lost out on schooling due to their mother’s illnesses and hospital stays. Or this participant, who argued against his girlfriend having to run his household at the same time as hers during the acute phase of his heart failure: “The (health insurance company) said that my wife could still do it at home, but that wasn’t possible for my wife, otherwise she would have collapsed under the pressure” (P 14). The family situation for one of the participants also changed in that shared sporting activities, such as playing soccer, were no longer possible. Strength to fight their way back into life because of the children was mentioned as a result of these changes in family situation. Two of the participants stated that their children gave them the strength to fight their way back into life, also ultimately because of the responsibility for the children, not having to leave them behind.

Changes in professional situation

Participants mentioned changes in their professional situation as a central aspect of their social experience, triggered by the physical restrictions and limitations in performance due to multimorbidity and complex chronic conditions. At the time of the interviews, two of the participants were in a reintegration phase back into working life and only worked a few hours a week. Two other participants had the opportunity to retrain within their company, with one of the participants still at the beginning of these retraining measures. One participant was on sick leave at the time of the interviews, and one of the participants was not working; all other participants were no longer practising their profession due to disability, although the degree of disability varied. All of these participants saw the chances of returning to work as critical, partly due to the prevailing physical limitations and symptoms: “Nobody takes me in my situation. Even when I speak, I tremble” (P 11), but also because of the risks for employers: “Hiring a fifty-year-old man who has 50% work capacity but an illness where it is not foreseeable how it will develop in the next few years” (P 1). The professional situation was particularly difficult for participants who had previously been self-employed, as they were no longer able to pursue their self-employed activity and therefore had no monthly income. One of the participants who ran a restaurant said that he and his wife had swapped roles. His wife now runs the restaurant and he looks after their young son: “I used to want her to look after the little one, didn’t I? And now it’s the other way around” (P 4). Two other previously self-employed interview participants had to close their businesses, with one of them having to apply for social assistance due to their financial situation.

Realignment of priorities and needs

Some of the participants indicated a realignment of priorities and a change in needs and goals. Work was no longer the main focus and priority, but health instead: “I have my priorities and my goals, and all that has changed (…) I have completely different needs (…) before work was the first priority, now it’s not, now it’s health (…). When they are healthy, they don’t usually think about health, they think about it when it’s already too late” (P 10). This being thrown back in life, to what really counts and is important, was also reflected in this participant in that he now wanted to concentrate primarily on himself and his own recovery: “I want to concentrate on me now, just me” (P 10). The reorientation of priorities was characterised by a reduced concern for many aspects of life, as participants described a shift in what they considered meaningful and important: “The stroke has made me much more relaxed. I don’t care about a lot of things” (P 13). Some of these participants also set themselves the goal of adopting a different lifestyle in order to be able to live with the illness.

Loss of autonomy and independence

The majority of participants reported a loss of autonomy and independence, particularly during the acute phase in hospital due to the severe physical limitations, where participants reported that they were completely dependent as a result: “At the beginning, I couldn’t walk. I couldn’t hold anything, I couldn’t eat” (P 10). Participants perceived job loss and disability as reasons for their loss of autonomy and independence: “I used to work, but now I can no longer work because no one will hire me for a job due to my situation” (P 11). Participants also described the inability to use public transportation or operate their own vehicles as a loss of autonomy and independence resulting from their physical and mental limitations: “I can’t drive right now (…) I can’t travel unaccompanied on public transportation, on streetcars, on trains” (P 12).

Loneliness and being alone

Due to physical and mental limitations, disability and unemployment, some of the participants reported experiencing loneliness and being alone that developed after the acute event occurred, as with this participant: “I used to live in Zurich and then I always commuted (…) I had lots of friends there, when I couldn’t do that anymore (…) I moved to Basel (…) (there) I no longer have any regular friends, they’re all away at the weekend, either hiking or in a vacation home. Yes, I’m mostly alone at the weekend (P 9). This feeling of loneliness arises even when there is a good environment, as this participant reports: “That’s very important, yes, because otherwise I realise that I have a super good environment, a social environment, but I still feel, I have the feeling that I’m getting lonely” (P 16). Participants also reported feelings of loneliness and spending much of their time alone, as their family members were often away due to work and school commitments. With their spouses employed and their daughters attending high school, they frequently spent most of the day at home by themselves: “My daughter was in high school and my wife is still a physiotherapist (…) My wife went to work more or less every day” (P 12).

Withdrawal from social life

Some participants also described a withdrawal from social life and isolation due to physical and psychological limitations. They reported withdrawing from social life by no longer participating in social events: “I used to go to tastings. I can’t do any of that anymore” (P 12). For this participant, sensory overload triggered by large crowds and a reluctance to burden others contributed to social withdrawal: “We ordered and when the food came, it was suddenly full and it became so lukewarm (…) and then everything in my body rippled and it was actually like a scream, get out of there now, I really couldn’t finish eating (…) But then that stops you from doing it with dear friends because you don’t want to be the spoilsport and that’s also the case with every invitation, where I’m then rather very careful and actually say no (…) I’ve also canceled all the concerts where I still had tickets” (P 16). This young participant describes pretending in society in order to avoid revealing inner emotional problems as a form of social withdrawal: “I often have to pretend in society (…) when you look at someone, you don’t think that they have so many problems inside” (P 2).

Lack of support

The participants mentioned in various ways that they did not feel sufficiently supported, both in terms of the provision of important information and direct support for participants. Almost all participants mentioned that no education about diseases took place. In a few cases, psychological support was not offered or was only offered after hospitalisation. Participants reported that despite severe physical limitations and caring for a minor child, they were not offered any support after hospitalisation. The couple had had no support, the husband worked and after work looked after his wife and did the housework: “No, no one is there. It’s my husband, sometimes I clean, then my husband cleans, nobody, just my husband and my daughter” (P 11). One of the participants mentions the lack of administrative support for obtaining a pension: “65 years is the normal retirement date. Do I have to present anything special for this? (…), but I don’t have anyone to support me” (P 12). Outpatient support was offered after the hospital stay in the context of a heart transplant, but as these costs had to be largely borne by the participant himself the previous time after the hospital stay, he refused it: “At the beginning I would have needed outpatient care again. I didn’t take it after the transplant, because yes, I would have had to pay for it myself again, because I didn’t want to make this negative calculation again (…). Neither the IV (disability pension), nor the hospital, nor the health insurance company wanted to pay for it” (P 14).

Constant field of tension within lived experience of illness

The lived experiences of young and middle-aged adults with multimorbid and complex chronic conditions are shaped by a constant tension between positive experience of illness and positive anticipation, and negative experience of illness and negative anticipation. These have an influence on the experience of this patient group on the physical, emotional and psychological level and on the social level and, conversely, these three levels have an influence on the positive or negative experience of illness as well as the positive and negative anticipation of the experience of illness. An illustration of the constant field of tension in the experience of illness can be found in figure 1.

Positive experience of illness and positive anticipation

A positive experience of illness was shown by the participants through a stable clinical picture, progress and improvements, and regaining independence. Positive anticipation was demonstrated by the participants through optimism, hope and confidence, integration of illness and fear into life, willpower, resilience, setting and achieving goals, being combative and beliefs and spirituality.

Stable clinical picture

Participants describe a stable clinical picture as a positive experience of the disease: “I actually feel very good. That means that the follow-up treatment, ie, the adjustment of medication after the disease, went very, very well (…) and actually, have a very stable clinical picture” (P 1). Similarly, this participant described a stable clinical condition following a heart transplant as a positive aspect of living with their illness: “I had a transplant a little over two years ago. So, I no longer have the problems with heart failure and I’m doing well” (P 14). Due to her stable clinical condition, this participant was able to commence a therapeutic work trial: “I started working the week before last, with the therapeutic work trial of two 2-hour sessions” (P 3).

Progress and improvement

Participants mentioned progress and improvements in physical functions over the course of the disease as another positive aspect of their experience with the disease. For some participants, these improvements and progress were already noticeable during their hospital stay: “Now I go home alone, I leave alone, and I come back alone. I prepare everything myself and calmly. It’s not as quick as it used to be, but it is” (P 5). For other participants, these improvements only became apparent weeks or months after discharge from the hospital: “Physically, things have improved a lot. It’s not quite like it used to be, but I can walk again, I can use my eyes again, and although I’m still a bit limited, my speech has returned completely” (P 16). An improvement was also observed with regard to sleep quality. Participants who suffered from sleep disturbances during their inpatient stay reported a decrease in symptoms after returning to their home environment: “When I was in the hospital, I didn’t sleep a single night, or very little (…) and that has completely changed since I came home, I sleep much better” (P 16).

Regaining independence

The participants described regaining their independence as a positive experience of the illness and as a primary goal in order to avoid being dependent on outside help for the rest of their lives: “Yes, I don’t want to be dependent on help all my life (…) my family helps a lot, but I want to become independent again” (P 15). The regaining of independence as a positive experience was demonstrated by the participants through the reinstatement of their driving licences: “I am glad that I have my independence back (…) Since the beginning of April, I have been able to drive again and also do extended shopping trips” (P 7). Participants also considered the ability to resume everyday activities, such as walking alone in a park, as evidence of regained independence “I thought about how I could do this alone now (…) I had to try (…) and then it went really well” (P 5).

Optimism

A few participants showed a positive attitude towards their illnesses and the associated limitations in their daily lives. This was also linked to an optimistic attitude that things are fine as they are at present and that they will return to how they were before the acute event: “Things will be the same as they were before (…) My everyday life is always a little closer to the goal. At home, I can do everything except load the dishwasher” (P 4).

One participant demonstrated optimism through an active approach to managing the chronic condition. The participant did not focus exclusively on the limitations of the illness but emphasised the importance of adhering to treatment recommendations, actively seeking information about the condition, and adapting their lifestyle to support their health: “What can I improve in my daily life? (…) I used to smoke (…) I don’t smoke anymore (…). From the time that happened to me, I simply changed my diet (…) I can do it myself (…) and I still motivate myself” (P 5).

Another participant demonstrated optimism by focusing on what was already functioning well and what had improved over the course of the illness: “I feel good, I’m doing better. (…) I couldn’t walk well, but now it’s getting better. I can take the bus home by myself. I can shower by myself; before, I couldn’t even dress myself” (P 11).

Hope and confidence

Hope and confidence were cited by participants as key aspects of positive anticipation. Making the best of the situation and looking ahead was one of these aspects: “I’m making the best of the situation now (…) I have no other choice or opportunity (…) I have to keep looking ahead (P 10). Confidence and hope for improvement in physical limitations were mentioned by the participants as another aspect: “That’s not the case yet, but they always say it can still happen, it can still change” (P 10). Confidence that everyday life will function despite illness was also mentioned and interpreted as positive anticipation: “I just went home with an open mind and said to myself: Now let’s wait and see what happens” (P 1).

Integration of illness and fear into life

The integration of the illness and the integration of fear into life was mentioned as a positive anticipation by almost a third of the participants. Integrating the illness involved accepting the illness: “So, and then at some point you get up and think, that (the illness) is just part of it now, you have to accept it” (P 8). According to the participants’, confronting reality was also an important aspect of illness integration: “Because somehow there was a point when I simply had to accept reality as it is” (P 5). Similarly, integrating the fear triggered by the symptoms of the illness was mentioned as a positive anticipation that has to be integrated into life in order to have normality in life again: “That you have to integrate your fear into your life, that you have normality in your life” (P 11).

Willpower

Willpower was named by the participants as one of the most important criteria for positive expectations: “Thank God I have a strong will” (P 10). This strong willpower enables the participants to cope with illnesses and limitations as well as the challenges of everyday life: “The head (is) stronger, and then you have to pull yourself together and say: Hey, I’m the head, you’re the body, you do what I say” (P 2). This willpower also enabled the participants, like this participant, to have positive experiences despite heart failure: “I went home on my own two feet and then did everything again under my own steam” (P 1).

Resilience

Resilience and confidence in oneself, that someone takes things into their own hands and know how to help themselves was mentioned as another positive anticipation, as in the case of this participant: “I’m single (…) and I’m actually always on my own (…) Of course I have parents and a social environment, but at the end of the day I’m home alone and have to deal with life’s challenges on my own and that has always worked very, very well so far. So, I wasn’t thrown in at the deep end (…) in the end I knew what to do. How I can help myself” (P 1). Resilience may be reflected in the return to daily routines. Participants reported being able to resume everyday tasks and responsibilities, such as assisting in a restaurant, caring for their son, or performing household activities. The resumption of these activities suggests that the individuals increasingly developed trust in their own abilities and regained confidence in their capacity to manage everyday demands: “Yes, I work at the restaurant part-time, except for Thursdays I’m pretty much always there (…) I can’t help much, but at least I can clear the tables (…). At home I clean, look after my son and feed the cat and the dog” (P 4). This participant reported resuming social activities and contacts, as well as an increasing future orientation despite ongoing health-related burdens. In addition, she expressed the wish to engage in sports again and to actively seek contact with an organisation such as the Swiss Cancer League: “I used to run ten kilometres, I can’t do that anymore, but I want to get back into better shape, and that’s the most important thing for me (…) the Swiss Cancer League always offered two hours of yoga, and I used to do that (…) and I want to get back in touch with that” (P 9).

Setting and achieving goals

Setting and achieving goals, which seemed important to the participants, was also mentioned as a key aspect of positive anticipation. These goals included regaining independence and autonomy, returning to normal everyday life, returning to work, regaining the ability to drive: “Yes, my goal is (…) to get my driver’s license back later” (P 9). Being able to play sports again, feeling like part of society again and being recognised as a contributor to society were mentioned as further goals from participants: “I don’t just need my life back (…) Integrating myself into normal life, that’s not bad, but it’s not enough for me (P 10). Focusing on a goal prevented this participant from mentally falling into a hole: “With self-care, I asked myself why I hadn’t somehow fallen into a hole? But when you have the goal of regaining your independence, you don’t have time for that” (P 7).

Being combative

Being combative and not giving up was mentioned as another aspect of positive anticipation. For example, one participant emphasised her determination not to remain in her current state: “But I have to fight it because I don’t want it either. I don’t want to stay in this state; I have to help myself for the future. But I’m getting better (…) It’s not really easy for me. It’s a challenge. Like I said, I have to help myself because I’m the one who’s in this situation (…) But now I have this challenge. But I can’t. I can’t walk away. What’s there is there. But I have to fight it. It’s not really easy for me to fight it, even with the help of the current medicine, the tablets, the medication” (P 11). While another participant expressed a strong desire to return to a normal life: “I need to find my way back to my old life (…) to be able to lead a normal life” (P 10). This combative attitude and refusal to give up were also reflected in participants’ persistence in seeking information about their illness. For example, one participant actively pursued further information and ultimately decided to change physicians due to insufficient information and communication regarding the condition: “I watched a lot of things on the internet (…) I watched videos (…) and now I have received a book, and I will read it (…) and I will find myself a different doctor” (P 15).

Beliefs and spirituality

Spirituality was mentioned as another positive anticipation of a participant, the attitude of positive thinking, that belief in oneself can move mountains and that the principle of resonance has a great effect: “Energy has a great effect (…) Good energy brings good energy” (P 10). Faith in God and his support was mentioned by one participant as another positive anticipation: “Now, by the grace of God, I am better than before (…) God, I want to get better. I don’t want that. I have a little girl. I don’t want to leave my daughter alone” (P 11).

Negative experience of illness and negative anticipation

A negative experience of illness was described by the participants through an unstable clinical picture, confrontation with a new illness and stagnation of the recovery process. Negative anticipation was demonstrated by the participants through displacement, self-pity and loss of perspective and assignment of blame.

Unstable clinical picture

As a negative experience of illness, more than half of the participants mentioned that the experience of illness is not a stable, steadily increasing state of improvement, but a constant up and down, and is perceived as challenging, like being on a roller coaster: “Now sometimes up, sometimes down. It’s pretty turbulent at the moment” (P 8). Participants described their unstable clinical picture as consisting of days when they felt stable and other days when nothing seemed to work: “Yes, there are certain days, I call them power days, so you feel good (…) and then there are days when nothing works” (P 2). Some of the participants found it difficult to compare the clinical picture in terms of better or worse, as an unstable condition prevailed, two steps forward, one step back and vice versa and coming in waves: “When I see it two weeks ago (…) and now, I can tell you that I’m far worse today, quite bad, because it’s really not a stable condition, it goes with waves. It’s like a tango 2 steps forward, one step back and then vice versa” (P 5).

Confrontation with a new illness

Another aspect of negative illness experiences mentioned by a third of the participants was the confrontation with new serious illnesses: “Yes, I had a second inpatient stay (…) another oncological intermezzo (…) and then emergency masses in the university hospital. And then I had testicular cancer” (P 13). Further the confrontation with a new, additional illness led to a renewed strong emotional burden for this participant: “I now have a new diagnosis. I’ve known for about two weeks. It’s a serious illness and I’m struggling with it. I’m not doing so well because it’s not curable and there’s no special medication, it’s a kind of rheumatism (…) I have limited systemic scoliosis (…) So that’s why I’m not doing well morally, I have to say” (P 15). Even if standard surgical procedures were necessary, as in the case of this participant, this intervention meant that she needed intensive support during and after her stay in hospital: “But patients who have so many other problems, illnesses, chronic illnesses, then it’s just an operation (surgery) that takes you off track, so to speak” (P 2).

Stagnation of the recovery process

The stagnation of the recovery process and thus the lack of improvement in the clinical picture were mentioned by the participants as a further aspect of the negative experience of illness. This stagnation in the recovery process is reflected in this participant in the absence of any improvement in vision following the stroke: “So I don’t see any improvement” (P 11). The stagnation of the recovery process, not seeing any improvement in the recovery process, was perceived by the participant as very stressful: “At the moment, however, it is very stagnant here (…) At the moment it’s just not going on at the same pace (…) and unfortunately I’m extremely affected by it at the moment (…) and this condition is really bothering me. So, I haven’t been able to come to terms with it yet” (P 16). This stagnation in the recovery process is also seen as an obstacle to further professional development: “I hope that this happens as quickly as possible (…) as I get better at working faster, otherwise it will not be possible to get anything” (P 6).

Displacement

The displacement of multimorbidity and complex chronic illnesses and the state of illness is reflected in participants’ negative anticipation for various reasons, as in the case of this participant, which results in her not wanting any further information about her illnesses: “No, I don’t actually feel that I have any chronic illnesses now (…) but I think I can speak well and. Yes, and I’m maybe a bit unsteady in my movements (…) In 2020 I had the (tumour) operation (on my head). In 2021 it all started with the epilepsy (P 9). Another reason given by another participant for repression is that she simply wants life to go on as before: “I don’t want to say that I’m ill, that I can’t go on, I just want to get on with my life. I know that it’s not easy, like it used to be when I didn’t have this illness” (P 5). Displacement and the desire not to think about the illness were described as indicators that this pattern of thinking, in the context of the participant’s psychological instability, contributes to the instability of the clinical condition: “So, I don’t want to think so much about this, because then I get anxious and (…) then I’m sure even more unstable (…) I don’t want to think about it” (P 13)

Self-pity and loss of perspectives

Self-pity and a lack of perspective are mentioned by individual participants as further negative anticipations of the experience of illness: “I think you feel pretty sorry for yourself, then the question of why me and not the others, yes, haven’t I paid enough and so on” (P 8). For this participant, the progression of the illnesses leads her to realise in the course of her life that she can no longer fulfil her wishes for the future and a certain lack of perspective sets in the further the illnesses progress: “It’s not even about why me (…) you would have so many dreams now in my situation, so to be a child again and you think or hope that you have a future, but the older you get, the more your dreams are taken away from you and (…) you realise that you can’t do certain things or achieve certain things” (P 2). Participants also reported that feelings of self-pity and a lack of future prospects sometimes led them to give up on themselves. “There have been seconds in this life when I’ve said, that’s it, I’m done” (P 10).

Assignment of blame

Blaming oneself, but also others, is mentioned as another negative anticipation of a negative illness experience for a few, such as this participant, who suffered a cerebral haemorrhage due to untreated hypertension: “The blood pressure was not treated, but it was not only my fault that it was not treated, because I have been to the doctor a thousand times and the doctor has said a thousand times, we will monitor it (…) That was also my fault, I have often changed health insurance (. …) the new doctor doesn’t know me, he hears 160, ah, that’s still okay” (P 10). Participants blamed others for not adequately considering their individual situation, which was associated with negative anticipation of the illness experience: “So, I was personally very unwell (…) I was hardly able to think clearly (…) but I wasn’t cared for at all in the hospital (…) They didn’t make any effort to help me (…) it was a truly terrible situation for me” (P 9). Repeated statements regarding a physical problem without any response were described as another form of attribution of blame: “I saw on the X-ray sheet (…) that something was wrong (…) I have been saying for the last 4 years, could someone please look, something is wrong, but they don’t have time, that’s the thing, they only react when it is almost too late (p 8).

Discussion

This study was conducted to inform the development of an integrated care model in Switzerland by capturing the perspectives of multimorbid and complex chronically ill young and middle-aged adults in the hospital setting, thereby providing insights relevant for its further development. Their experiences are conceptualised along three dynamically interrelated dimensions. Participants’ experiences encompassed physical, emotional and psychological, and social dimensions. Physical challenges included physical limitations, impaired concentration and memory deficits, exhaustion and tiredness, reduced performance capacity, pain and sleep disorders. Emotional and psychological experiences were characterised by fears, worries, helplessness, despair and worthlessness, uncertainty, overwhelm and depressive symptoms. Socially, participants reported changes in family and professional situations, realignment of priorities and needs, loss of autonomy and independance, loneliness and beeing alone, withdrawal from social life and lack of support. These experiences were embedded in a constant field of tension between positive experiences of illness and positive anticipation on the one hand and negative experiences of illness and negative anticipation on the other. Positive experiences included stable clinical picture, progress and improvements and regained independence. Positive anticipation was characterised by optimism, hope and confidence, integration of illness and fear into life, willpower, resilience, setting and achieving goals, being combative and beliefs and spirituality. Negative experiences involved an unstable clinical picture, stagnation in recovery process and confrontation with a new illness. Negative anticipation was characterised as displacement, self-pity and loss of perspective and assignment of blame. This constant tension, in turn, influenced the experiences of this patient group on a physical, emotional, psychological and social level. Conversely, these levels influenced both the positive and negative experience of illness and the positive and negative anticipation surrounding it.

These findings indicate that multimorbidity and complex chronic conditions affect young and middle-aged adults’ physical and psychosocial functioning. These findings are consistent with findings from other studies,^{21 40 61 62} including reduced mobility, physical limitations, pain and fatigue in this patient group. In addition, these physical experiences also affect patients’ emotional and psychological well-being. The studies further show that middle-aged adults with multimorbidity may respond psychologically to the resulting impairments with depression, anxiety, as well as feelings of anger, irritability, resentment and loneliness.^61–63 The relationship between multimorbidity and depression is described in the literature as bidirectional, meaning that depression increases the risk of developing multimorbidity, while multimorbidity likewise increases the risk of depression.^64–66 Multimorbidity and complex chronic conditions also affect the emotional and psychological experiences of young and middle-aged adults.⁶⁷ Furthermore, studies show that depression and anxiety are associated with greater impairments in behavioural indicators of social functioning, such as the size of one’s social network, social activities and perceived social support, as well as affective indicators, including loneliness, sense of belonging and perceived social impairment.^{68 69}

These findings also indicate that multimorbidity and complex chronic conditions have numerous effects on individuals’ social lives. These findings are in line with previous research highlighting the social consequences of multimorbidity and complex chronic conditions. Work performance was impaired, often leading to job changes or early retirement.⁶¹ In addition, lower employment rates and reduced work productivity have been reported,⁴⁰ along with lower overall employment levels.^{35 62 63 70–75} Some studies also describe reduced average income, in some cases below the poverty line,⁷⁶ as well as increased dependence on social assistance.⁷⁰ In addition, multimorbidity also affects family life and leisure activities.⁴⁰ Middle-aged adults with multimorbidity and their families often report restricting social contacts in order to manage treatment-related demands and family responsibilities.^{35 75} Many participants indicated that their conditions limited their ability to engage in or enjoy leisure and social activities. Others reported strained family relationships, with some cases describing deterioration or breakdown of marital relationships.^61–63 Although treatment burden was not explicitly addressed by participants, it can be assumed that managing medical appointments, implementing lifestyle changes and adhering to medication regimens constitute a substantial burden. This is supported by existing literature on treatment burden, which demonstrates how burdensome medical treatment is for adults of any age and the influence of their social network.^{77 78}

An important finding of this study is that participants’ experiences are characterised by a constant field of tension between positive illness experiences and positive anticipation, and negative illness experiences and negative anticipation. To our knowledge, this dynamic has not been explicitly described in previous research. The findings suggest that participants’ experiences are shaped by a constant field of tension between illness experiences and anticipation. As this tension influences experiences on physical, emotional, psychological and social levels, and vice versa, interventions targeting these dimensions may be beneficial. In addition, fostering positive anticipation towards behavioural change and resilience may contribute to a more positive experience of living with multimorbidity and complex chronic conditions. A few studies suggest that this influence may be achieved through the targeted use of cognitive strategies—such as re-evaluation, prioritisation and adaptation of beliefs—to help young and middle-aged adults with multimorbidity and complex chronic illnesses to better manage their multiple chronic conditions on their own. In addition, it is important to support patients in prioritising treatments, reducing their workload, and coordinating and mobilising existing resources. In this way, affected individuals may reduce their treatment burden, establish routines, and sustainably integrate their treatment into their daily lives.⁷⁹ Coping mechanisms such as maintaining a sense of humour, taking action, and taking personal responsibility for care, as well as social support, promote resilience in this patient group despite feelings of being overwhelmed and hopeless.⁸⁰

These findings emphasise that multimorbid and complexly chronically ill younger and middle-aged adults require integrated care delivered by a coordinated and proactive interprofessional core team, supported by a designated care coordinator who facilitates communication and collaboration within and across healthcare sectors. This integrated care model should encompass holistic, person-centred care, continuity of care and transitional care, as well as additional key elements such as collaboration, guidance and coaching, and psychosocial support. These findings are consistent with the existing literature, which underscores the need for holistic, person-centred and coordinated care models that ensure continuity across healthcare settings, particularly during transitions from hospital to home.^81–84 In addition to medical care, a comprehensive needs assessment is required at hospital admission to capture the individual complexity of each patient. The complex experiences of this patient group require the development and implementation of a complex and holistic care throughout the entire treatment process, including inpatient care, transitional care, and care at home, tailored to their specific needs and requirements. Furthermore, the findings suggest that physical, emotional, psychological, and social factors must be taken into account.⁸⁵ Care for this patient group should be person-centred and based on a holistic view of patients, their illnesses and medical needs, as well as their individual needs, problems and challenges. This person-centred view of multimorbidity differs significantly from the disease-centred comorbidity perspective of previous care models^{86 87} and underlines a paradigm shift from a disease-specific biomedical approach to a holistic, biopsychosocial understanding of health and care for multimorbid and complexly chronically ill younger and middle-aged people.⁸⁸ Patients with multiple chronic conditions and limitations have an individual and unique experience that transcends the sum of their individual diagnoses.⁸⁹ The resulting complexity of treatment and health burdens necessitates a holistic, comprehensive and person-centred approach that systematically considers and integrates the actual and individual needs, personal experiences, and values of this patient group, extending far beyond disease-specific care strategies.⁹⁰

The continuity of care for this patient group during the transition from hospital to home and within the home environment is crucial. This requires comprehensive, individualised, and continuous care that meets the needs of this patient group and counteracts the inadequate and fragmented care in the current Swiss healthcare system. Since the participants’ experiences were characterised by anxiety about hospital discharge, partly due to their fluctuating and unstable health condition, continuity of care between hospital and home seems to be essential to prevent deterioration and promote a more stable state of health.^{91 92} The findings of this study also indicate that participants did not feel adequately supported, that essential information about their illnesses was lacking, and that no education or training was provided either in hospital or at home. This underscores the need for transitional care to ensure continuity of care, prevent deterioration in this at-risk group, and support a timely and safe transfer between hospital and home environment.^{93 94}

A finding of this study is that collaboration with patients plays a crucial role in supporting them and helping them achieve their individual goals. Given the complexity of care needs in this patient group, effective collaboration among healthcare professionals within the hospital and with community-based healthcare services is equally important to achieve the best possible outcomes for patients. These findings are in line with previous research highlighting the importance of patient involvement and interprofessional collaboration in the care of individuals with multimorbidity and complex chronic conditions.^{92 95} Another finding of this study emphasises that this patient group requires guidance, coaching, and education in the hospital and at home—complex self-management and symptom management, health-promoting and preventive behaviours, which require comprehensive measures and behaviours to protect and promote health and the ageing process, as well as to cope with the physical and psychosocial impacts of multiple chronic conditions. These findings are consistent with previous studies that consider counselling, coaching, and education for complex self-management and symptom management, health-promoting and preventive behaviours, and comprehensive measures and behaviours to be essential.^{75 96 97} This study demonstrates that these can be more effectively integrated into the lives of young and middle-aged adults with multiple conditions.⁴³ Young and middle-aged adults with multiple chronic conditions must cope not only with the burden of these conditions but also with the burden of self-care. These burdens can negatively impact self-management of multimorbidity and the complexity of the conditions, thus affecting health outcomes. Therefore, supporting complex self-management is crucial.^{98 99} This patient group, particularly those with mental and physical multimorbidity, has difficulty organising the necessary tasks to bring a sense of normalcy to their daily lives and also requires complex support to reduce negative feelings, especially those caused by job loss due to their multiple illnesses.¹⁰⁰

These findings underscore the importance of psychosocial support in addressing the emotional, psychological, and social challenges associated with multimorbidity and complex chronic conditions. Participants described a substantial psychosocial burden, including anxiety, worry, depressive symptoms, strained family relationships, changes in employment, and social withdrawal resulting in reduced social contacts. These findings suggest that psychosocial support should be integrated into the care of individuals with multimorbidity as part of a collaborative and interprofessional approach. This interpretation is consistent with previous studies highlighting the considerable psychosocial impact of multimorbidity and the need for comprehensive support that extends beyond the management of physical symptoms.^{21 35 36} Furthermore, the literature emphasises the importance of considering patients’ individual priorities, preferences and available resources, as these play a key role in balancing healthcare demands with everyday life and in managing treatment-related challenges. This suggests that care and treatment should be tailored to the individual circumstances of this patient group in order to support them in resolving and managing conflicts between daily activities and healthcare requirements.^{21 35} Furthermore, the findings highlight the need for healthcare systems and healthcare professionals to develop a deeper understanding of the experiences of younger and middle-aged adults living with multimorbidity and complex chronic conditions. Such an understanding is essential for the development of holistic, person-centred care and adaptive healthcare plans that address patients’ needs and strengthen the skills and resources required to manage daily life and long-term health challenges.⁴⁰

Limitations

This study provided valuable insights into the lived experiences of younger and middle-aged adults with multimorbidity and complex chronic conditions, encompassing a wide range of life circumstances. However, several limitations should be acknowledged.

A potential limitation of this study is the absence of participant validation (member checking). Given the vulnerability of the participant group and the sensitive nature of some of the topics discussed during the interviews, re-contacting participants for feedback on the findings could have imposed an additional emotional burden. For ethical reasons, priority was therefore given to safeguarding participants’ well-being and minimising potential distress. Nevertheless, it should be acknowledged that the lack of participant validation limited the opportunity to confirm whether the researchers’ interpretations fully reflected the participants’ intended meanings.

Another limitation of this study is that the sample consisted primarily of younger and middle-aged adults with neurological and cardiovascular conditions. Future research should therefore investigate the generalisability of these findings to individuals with other multimorbid conditions and across different age groups.

This study provides preliminary insights based on an initial sample that was relatively homogeneous in terms of clinical presentation but heterogeneous with respect to age, ranging from 18 to 64 years. As a result, a further limitation is that the wide age range of participants does not allow for generalisable conclusions to be drawn for the target population, as age-related differences are likely to exist. Future research should therefore investigate whether and to what extent younger and middle-aged adults differ in their experiences and needs.

Conducted in Switzerland and reflecting the context of the Swiss healthcare system, this study may have limited transferability to other healthcare systems. As the first study of its kind in Switzerland focusing on the experiences of younger and middle-aged adults with multimorbidity and complex chronic conditions, further research is warranted to explore these experiences in greater depth.

Finally, this study represents an initial step toward a theoretical understanding. However, the development of a more robust theoretical framework, such as a middle-range theory, would require a theory-driven sampling strategy, which was beyond the scope of this study.

Conclusions

This is the first study in Switzerland to examine the experiences of young and middle-aged adults with multimorbidity and complex chronic illnesses during and after a hospital stay. Overall, this study highlights that younger and middle-aged adults with multimorbidity and complex chronic conditions experience multidimensional care needs that extend beyond purely medical management. Participants’ experiences exist within a constant tension between positive experiences and anticipations of illness on the one hand, and negative experiences and anticipations on the other. These, in turn, influence the experience of this patient group on a physical, emotional, psychological and social level. Conversely, these three levels affect both the positive and negative experience of illness as well as the positive and negative anticipation of the illness experience. In the context of these findings, this section presents key conclusions, recommendations and implications.

These findings indicate that young and middle-aged adults with multimorbidity and complex chronic conditions have very specific needs within the Swiss healthcare system and require a tailored approach to receive appropriate care that addresses their actual needs. This underscores the need for holistic, person-centred and coordinated care models that ensure continuity across healthcare settings and during transitions between hospital and home, that goes beyond the disease-centred comorbidity perspective of previous care models.

A key element of such models is a coordinated proactive care by an interprofessional core team and a central coordinator, that operates within and between the different health sectors. This role of a central care coordinator requires advanced clinical practice, strong coordination skills and the ability to mobilise available resources to ensure safe and high-quality patient outcomes.^{83 84 101} In particular, this healthcare professional must be able to facilitate collaboration and knowledge exchange across disciplines and organisations in order to ensure continuity of care, shared understanding of complex patient needs and improved care quality.¹⁰² APNs are particularly well suited for such leading roles within integrated care models due to their advanced clinical competencies and holistic and person-centred care perspective. They are also well positioned to support self-management and health literacy in this patient group.^103–105 The findings of this study therefore provide an important basis for future role development.

In addition, the findings suggest the need for a stronger person-centred perspective in multimorbidity and complex chronic care, as this patient group experience illness in highly individual ways that go beyond the sum of single diagnoses. This calls for a paradigm shift from a disease-oriented biomedical approach towards a biopsychosocial and holistic understanding of health and care for this patient group. The complexity of treatment burden further requires care approaches that systematically integrate patients’ actual needs, personal experiences and values into care planning.

Furthermore, guidance, coaching, education and psychosocial support emerge as essential components for addressing self-management demands and reducing treatment burden. Strengthening collaboration with patients as well as among healthcare professionals, alongside ensuring continuity of care, may further improve outcomes for this patient group.

From a practice perspective, the Swiss healthcare system should more closely align care delivery with individual priorities, preferences and available resources of young and middle-aged adults with multimorbidity and complex chronic illnesses in order to better integrate treatment demands into everyday life and support sustainable self-management. In particular, mental health should receive greater attention, as it plays a central role in shaping patients’ ability to cope with multimorbidity in the context of their physical, financial, familial and social circumstances. Supporting patients in maintaining a sense of normalcy in daily life is therefore an important aspect of care.

Future research should focus on how such integrated care models—integrating holistic, person-centred and coordinated care—that can be effectively implemented in routine clinical practice and how their impact on patient-reported outcomes, treatment burden and quality of life can be evaluated.

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.