Being an adolescent with epilepsy during the transition from pediatric to adult hospital care: A qualitative descriptive study

Background: The transition from pediatric to adult care is challenging for adolescent patients despite numerous recommendations in recent decades. However, the perspective of the patients is sparsely investigated. Aim: To explore the experiences and needs of adolescents with epilepsy (AWE) during the transition from pediatric to adult hospital care. Methods: We conducted 15 semi-structured interviews with AWEs aged 13 – 20 years and 10 h of field observations of consultations. Interviews were audio-recorded, transcribed, anonymized, and entered into NVivo (version 12, QSR International) with the transcribed field notes. Data were analyzed using systematic text condensation. Results: Three themes were identified: (1) Navigating epilepsy in everyday life; (2) The difficult balance between concealment and openness about epilepsy; and (3) Being seen as an individual and not an illness. AWEs ’ needs in transition are closely associated with their experiences and perceptions of illness, treatment, consultations, and seizures. Notably, AWEs reveal a significant concern about being overlooked beyond their medical condition in appointments. Conclusions: This study highlights the vulnerability and challenges of AWEs transitioning to adult care. Overall, AWEs seek understanding, acceptance, and autonomy in managing their epilepsy and transitioning to adult care. Their experiences underscore the importance of holistic support and communication in healthcare settings. A concerted effort from healthcare professionals (HCP) is necessary to foster the recognition of AWEs as individuals with distinct personalities, needs, and capabilities.


Introduction
This study focuses on adolescents with epilepsy experiences and expressed needs during the transition from pediatric to adult hospital care.Worldwide, epilepsy is the most common neurological condition in adolescence, with an estimated prevalence rate of five per 1,000 population and an incidence of approximately five to seven cases per 10,000 children [1,2].Living with epilepsy in adolescence is more than dealing with recurrent, involuntary, and unpredictable seizures.The condition also has implications beyond physical effects, including emotional wellbeing, social inclusion, quality of life, and care [3][4][5][6][7].Epilepsy in adolescence can be associated with various difficulties and symptoms, including anxiety, depression, low self-esteem, comorbidities, learning difficulties, executive dysfunction, and behavioral problems [8][9][10].
Several systematic reviews on the experiences of AWEs living with epilepsy disclose that epilepsy affects many aspects of an adolescent's life, including physical and mental health, social relations, and educational achievement [11][12][13][14][15][16][17].The affected issues are restrictions versus opportunities, stigma and discrimination, alcohol, detachment from parents, autonomy, peers, driver's licenses, relationships, intimacy, loneliness, social isolation, compliance, and self-esteem [18][19][20][21][22][23].Further, the literature shows that epilepsy compels the AWEs to relinquish their sense of privacy, their bodily control, their normalcy, their freedom, and their confidence to engage in school and social activities [24][25][26][27].The daily uncertainties brought on by the unpredictable timing and potential harm from seizures, the side effects of ongoing therapy, and the uncertainty of remission overwhelm AWEs and affect the quality of life [28][29][30].
Despite numerous recommendations in recent decades, the transition from pediatric to adult care remains challenging for adolescent patients [31][32][33].From a transition theory perspective [34,35], Meleis (2010) reports that the development of greater self-identity and growing independence characterize the transition.The transition experience is interwoven into a pattern of developmental (adolescents becoming young adults), health-illness (role changes, self-management of chronic disease), and situational (discharge from pediatric care and starting a new adult health care) transition issues [35].Research has established that transition and transition care is recognized as a critical component of care and has become increasingly important as more adolescents dealing with chronic illnesses are living into adulthood [36].However, the transition to adult care often consists of single handling by a referral letter (transfer) instead of an organized and gradual process (transition) [37].
Moreover, most practical models for organizing transition care, e.g., transition clinics, educational programs, skills training, transition coordinators, and enhanced follow-up [38][39][40][41], have been developed and evaluated, focusing on the effectiveness of health outcomes or through quantitative analysis [42][43][44][45].It is essential to complement this research with AWE's firsthand experiences.In general, AWE's experiences and needs in transitioning from pediatric to adult care are sparsely investigated, and less is known about the holistic perspective [44].Obtaining insights into AWEs' understanding of their condition, their experiences negotiating care, and their role in their care can offer insights into the practical implications for AWEs managing their disease.It can lead to a deeper understanding of how epilepsy shapes AWEs's lives [46].Therefore, this study aims to explore the experiences and expressed needs of AWEs in epilepsy care during the transition from pediatric to adult hospital care.The term transition addresses the preparation period to and experiences after the transfer from pediatric to adult health care [35].We define adolescence as the phase of life between childhood and adulthood, from 12 to 22 years, consisting of specific physical, psychological, and social development [47].

Design
This study is a qualitative explorative study.The approach applied is phenomenological-hermeneutic, inspired by Giorgi's thoughts on the lived experiences of phenomena rather than individual stories [48].Giorgi argues that the goal is to gradually expose common perspectives on how participants experience a phenomenon rather than sharing narratives of single individual stories.A deeper understanding of a text will arise by combining a phenomenological comprehension and descriptive character with a hermeneutic explanation and interpretation [49].A qualitative narrative methodology is utilized, using participant observation [50] and semi-structured interviews [49].

Setting
The study was conducted in an outpatient clinic at the Odense University Hospital, a secondary epilepsy center in Denmark, where the adolescent's routine epilepsy clinic appointments and regular followups were completed in the patient pathway.In Denmark, young people with epilepsy are followed at the children's ward until they are 18 years of age.Clinical management in the pediatric department consists of outpatient treatment and follow-up with a doctor and nurse every six months.In adult neurology, scheduled appointments are primarily replaced by "on-demand" contacts, as described in Hansen et al. [51].In this university hospital's outpatient clinic, approximately 18-20 AWEs meet the inclusion criteria and transition to adult care each year.The transition is accomplished by referring AWEs to the adult department, which takes over clinical management after assessment by a senior neurologist.The pediatric and adult departments can be contacted by AWE and their families via telephone at all times in case of any issues or difficulties that may develop between scheduled consultations.

Recruitment and participants
The first author (OAH) recruited participants between September 2021 and March 2022 in cooperation with the epilepsy nurse specialists.The inclusion criteria for participants were adolescents between 12 and 22 years old, understanding and speaking Danish, having the onset of epilepsy in childhood or adolescence, and having relatively normal cognition defined by the ability to attend Danish primary school.Participants received oral and written information about the study and were invited by OAH to participate in semi-structured interviews.They provided signed informed consent, allowing OAH to contact them to schedule the interview.For adolescents under 18 years old, both parents and adolescents signed the informed consent.Two patients did not respond, and one declined to participate due to a lack of time.

Data collection
Fifteen interviews and 10 h of participant observations were carried out by the first author (OAH), an experienced neuroscience nurse, from September 2021 to May 2022.Interviews were conducted in the location preferred by the patients: either in the patient's home (nine), at the hospital in an undisturbed room (four), or by telephone (two).Parents were present in ten out of fifteen interviews at the request of the AWE.The interview guide was developed based on the existing scientific knowledge of the research topic, the study aims, and the preliminary findings derived from the participant observations.Each interview started with open-ended questions about the participant's everyday life experiences with epilepsy to acknowledge their history and individual perspectives.The interview continued to be more structured, focusing on the following topics: experiences with the impact of epilepsy, experiences of being AWE in the process from pediatric to adult ward, and experiences of needs in everyday life with epilepsy.The interviews lasted between 30 and 127 min and were audio-recorded and transcribed.
Observations were performed at the Pediatrics and Neurology Department during consultations.An observational guide was developed based on Spradley's nine dimensions [50].The aim was to gain insight into the interaction, communication, and issues discussed during consultations and to grasp a sense of the participants' lived experiences.Field notes, including direct quotations, were written during and after the observations, including informal interviews with patients and HCPs, and subsequently transcribed.The preliminary findings from participant observations were used in the individual interview to ask clarifying questions based on a contextual understanding of the field.Observations lasted between 21 and 65 min.

Data analysis and interpretation
The software NVivo (version 12, QSR International) was used to structure data and facilitate further analysis.The transcribed interview data and field notes were analyzed as one coherent text inspired by Kirsti Malterud [52].According to and inspired by Malterud, the systematic text condensation was carried out in four steps.All transcripts and notes were read in the first step to gain a total impression and to transition from chaos to temporary themes.In the second step, the data was re-read to identify and extract units of meaning.Units of meaning refer to quotations that illuminate meanings, represent the data, and imply a movement from temporary themes to codes.The identified codes were condensed into categories and subcategories in the third step.Finally, the findings were reconceptualized in the fourth step, meaning that the analysis went from condensation to descriptions [52,53].Table 1 provides examples of the first three steps of the systematic text condensation analysis.The results were then analyzed and compared to relevant theories and research.This critical analysis aimed to enhance our understanding of the emerging themes.

Ethics
The Scientific Ethics Committee evaluated the study, which granted dispensation from a detailed assessment according to Danish legislation.Further, the study was reported to the Danish Data Protection Agency (20202000-229) and added to Region Southern Denmark's register of research projects (21/38124).We assure that the study followed the ethical standards outlined in the 1964 Declaration of Helsinki and its subsequent amendments or comparable ethical standards [54].The participants and HCPs received both written and oral information about the study.Before each participant's observation, an HCP informed and asked the participants if they were interested in OAH's presence in the consultation.The data presentation ensured anonymity, and both the recordings and transcriptions were processed and stored with strict confidentiality measures.All personal attributes included in this article were intentionally obscured to guarantee participant anonymity.

Researcher reflexivity and trustworthiness
OAH conducted the interviews under the supervision of co-author JC, an experienced interviewer and researcher in qualitative research.Phenomenology and hermeneutics both seek to uncover the life world or the lived experiences of individuals [55].In this study, the phenomenological approach involved the search for descriptions of experiences and expressed needs of AWEs transitioning from pediatric to adult hospital care.The hermeneutic approach was applied to create meaning and achieve an understanding of these experiences.The first author performed steps 1 and 2 of the analysis.The first and last author (MKL) performed steps 3 and 4 through reflections and discussion to ensure transparency, agreement, and the perspective of the research objective.
MKL is an experienced researcher in the qualitative field.To ensure a comprehensive and consistent understanding of the categories, subcategories, and synthesis, the authors (OAH, MKL) continuously reviewed and revised them.To do so, an interpretation is required.In qualitative research, the researcher's presence during data collection and influencing the research is inevitable.Thus, reflexive practice was performed, including the assessment of subjectivity, throughout the entire study.Following every participant observation and interview session, reflexive thoughts were written down and discussed within the research group to create awareness of preconceptions.The first author was employed at the institution where the data were gathered.However, this author was not involved in caring for patients with epilepsy and was able to attend the participant observation open-mindedly.The study's trustworthiness was strengthened by using direct quotations to illustrate the details of AWE descriptions in the analysis and by providing an example of the systematic text condensation analysis in Table 1.Moreover, in the reporting of this study, the consolidated criteria for reporting qualitative research was used [56].

Participants characteristics
In total, 21 AWEs participated in the study.Table 2 shows the characteristics of the participants.The average age of the participants was 16.5 years, and the mean time since diagnosis was 5.1 years.
The systematic text condensation analysis revealed that AWE needs in transition are closely associated with their experiences and perception of the illness, treatment, consultations, and seizures.Accordingly, they described seizures' intrusive role in everyday life as a struggle to fit in and keep up with their peers and the challenging balance of disclosure.
The systematic text condensation analysis identified the following three themes: 1) Navigating epilepsy in everyday life; 2) The difficult balance between concealment and openness about epilepsy; and 3) Being seen as an individual and not an illness.Table 3 shows an overview of themes and the content of themes.In the following section, we delve into these themes with greater intricacy.
Theme 1. Navigating epilepsy in everyday life AWEs find it challenging to navigate in everyday life due to the unpredictability and fear of seizures.In addition, everyday life with a chronic disease demands something special from AWEs.The needs of AWEs vary concerning the transition from child to adult care but also arise from the structure of the family, the school and education system, and the quality and quantity of social interactions with peers.For AWEs, the notion of possible seizures and the feeling of having epilepsy are always at the forefront of everyday life.
"The worst part is probably being able to remember my seizures and always having that in the back of my mind, that I have [epilepsy] or how it felt to have it.But otherwise, the thing about taking care not to have seizures anymore and stuff, that's just become part of everyday life.[…] The worst part is just the thought of the seizures."P9 (16-year-old female) The AWE lives with constant alertness, focusing on what is happening in their bodies.They experience something that controls their everyday lives, so they constantly have to reflect on, "Can I do it?""How does it affect me?."However, several of the AWEs move from being afraid of having seizures to the fact that it is part of everyday life that they learn to live with for the rest of their lives.Despite experiencing it as tedious and annoying, they have come to terms with the fact that managing everyday life with epilepsy requires them to consider risk factors like alcohol, sleep, and stress.Still, AWEs experience epilepsy as impacting their daily lives, e.g., driving licenses, alcohol, parties, jobs, and education, at times leaving them feeling less liberated compared to their friends who enjoy broader opportunities.

Table 1
Example of the systematic process in the systematic text condensation.
Step 1: Temporary theme Step 2: Meaningful unit Quotation

Code
Step Not being able to get a driver's license along with their friends becomes an indicator of the limitations and challenges that AWEs face at the threshold of adulthood.It illustrates their differences, represents a loss of freedom compared to their friends, and is a practical barrier to many ordinary activities.
AWEs express that the presence and satisfaction of meaningful friendships are significant in their daily lives, contributing to selfconfidence and the sense of not feeling different.
"When you finally get some friends who help you get started and motivate you, you become very happy, much happier, and much more satisfied with who you are.Not what you are.You're a girl, you're a good, healthy, beautiful person inside and out in your very own way."P3 (17-year-old female) Good interactions and positive impact with friends mean they can be motivated and gain more self-confidence.They actually feel healthy and beautiful, and there is some recognition from their peers.However, some AWEs describe having few or no friends, which they experience as a profound separation and isolation.Very few have any contact with other people with epilepsy.However, when they have contact, it is perceived as a deeper kind of attention and understanding because it points to the importance of sharing experiences.
"So I've also been chatting with someone else who had epilepsy.[.].It's cool that there's another understanding of it rather than just the usual: "We sympathize with you."But the care that comes from someone else who experiences it daily, there's obviously a different level of understanding."P11 (17-year-old female) For AWE, who have relations or chat with others with epilepsy, it is a tremendous benefit.They describe the connection as delightful because they can relate to each other, have a deeper comprehension of living with epilepsy caused by their own experiences, and realize they are not alone in dealing with the challenging issues of adolescence and epilepsy.For most adolescents, teenage life is about increasing independence and emancipation from parents.For AWEs, however, it looks different.Due to the unique challenges associated with epilepsy -in particular, precautions due to the risk of seizures and medication, the AWEs report increased awareness and control from parents, as shown in the following: "But the monitoring didn't help me because I just became more upset and frustrated that I couldn't just have my way.I mean, like, I'll definitely text when I arrive or if that's needed.It's that constant surveillance.That, I found really tough.It was, you know.There have been many conflicts around the fact that I have not been allowed in the same way to join in… Always having to… they [parents] had to know every single thing I was doing."P19 (18-year-old female) Some AWEs express frustrations and anger due to their perception of excessive parental monitoring, which implies a loss of autonomy and privacy.In addition, AWE experiences a change in the relationship with the parents from liberation to control.Restrictions and limitations imposed by parents to participate in daily life activities are a significant distress point for many AWEs.However, the effect is often the opposite of what is intended and causes conflicts in the family.AWEs move in the opposite direction instead of cooperating, and few move in direct opposition.Further, some AWEs feel that over-protection can lead to insecurity and non-independence, as shown in this example:

Table 3
Overview of themes and their content.

Navigating epilepsy in everyday life
The difficult balance between concealment and openness about epilepsy

Being seen as an individual and not an illness
Constant alertness as a state of mind

A point of undesirable attention
The need to be involved, seen, heard, and understood during consultations and transition From being afraid to a part of everyday life Some AWEs develop feelings of insecurity due to the parents' vigilant carefulness and struggle to become independent in their future lives.The constant attention from the parents has an impact, causing AWEs to become overly self-conscious and adopt their parents' anxieties.On the other hand, some AWEs experience good relationships and family support as necessary to provide opportunities and challenges when adapting and coping with living with epilepsy and restrictions and adjustments.
"I'm just so grateful for my good parents who have supported me all the way through, but maybe they're a bit mother hen."P6 (13-yearold male) Several AWEs acknowledge their parents' support and maintain good relationships with them.They are aware of the overprotection but accept it as love and care for them -however, a few conflict with their parents about risk-taking.Alcohol becomes a concerning problem for many AWEs as they begin to experiment with it as early as primary and secondary school.AWEs find themselves in a dilemma because refusing alcohol can lead to social exclusion while accepting it increases the risk of experiencing seizures.Sometimes, they give up on social activities, but many participants find a middle way in their everyday life.Some AWEs consider taking risks by stopping medication for a while to see what will happen, while other AWEs deal with the consequences and responsibility themselves.Many follow the advice from HCPs and their parents.The potential risk of having a seizure from drinking alcohol is downplayed by some, considering that there are always things to be cautious about despite parental warnings.Furthermore, the desire to pursue one's wishes and learn from those experiences is significant.Several AWEs express difficulties managing their school engagements and social activities due to intermittent fatigue, low concentration, and memory problems.In addition, they express that their unmet needs or challenges and general concerns about epilepsy are not taken into account in school, which affects academic performance and self-esteem.
"Yeah, often, if I've had a seizure in the evening, I've had to sleep extra, and then I couldn't go to school.Or if it happened just before school, I also couldn't go because I was simply too tired.If it happened at school, I had to go home as well.So it [epilepsy] has really affected school a lot.I've been home a lot because of it."P15 (18-year-old female) AWE expresses that they have problems with absence from the school and education system due to epilepsy and the adverse effects of medication.The need for sleep that accompanies their seizures can last hours or a whole day.This means that AWEs either miss school or drop out of school.Frequent school absences pose a challenge in maintaining academic progress, and for some AWEs, it can jeopardize their chances of completing their education later in life.These absences also risk isolating AWEs from their social circles within the classroom.For others, the tiredness is experienced only during a seizure and might last for a short period; thus, they can return to regular classroom activities.However, the experience of losing education for shorter or longer periods results in limited participation in school and other physical and social pursuits.

Theme 2. The difficult balance between concealment and openness about epilepsy
Whether or not to disclose epilepsy to peers, friends, and surroundings is experienced by many AWEs as a significant issue of great concern.It can be difficult to tell about epilepsy across school, work, and other contexts.Choosing disclosure poses various considerations for AWEs, and considerations encompass aspects such as the desire for normalcy, the potential reactions of others, the personal and societal attitudes toward epilepsy, the particular challenge posed by the hidden nature of their condition, difficulties with peer relationships, and restrictions being places on them.Finding a balance between the abovementioned considerations is perceived as difficult but essential.If they do not tell, they can appear to be equal and thus be with friends without feeling different.At the same time, AWEs want to be treated like any other adolescent and to be part of the herd without being looked at as different.Conversely, talking about epilepsy can make it a point of attention that takes all the attention instead of an AWE as a person.
"Well, sometimes I find it difficult to say because suddenly I feel like that's the only thing people think about when they're with me or when we're doing something.AWEs try openness by talking about epilepsy but end up achieving unwanted attention, which is experienced as annoying and exhausting.Excessive displays of concern from others are unwanted reminders of their illness and can sometimes magnify the notion that AWEs are different.For some AWEs, the extent to which they prefer closure or openness is influenced by a wish to appear normal and their apprehension of social stigma.Uncertainty about friends/new friends will continue to take account of the AWE.
"[.] it's tough socially to think that you stand out from the others when you just want to be normal."P21 (14-year-old male) AWEs wish to be normal, to fit in, and to be accepted by their peers, but they are aware of their otherness and of being different.Some AWEs feel labeled stigmatized and are reluctant to disclose their epilepsy because they consider possible consequences in everyday life, such as being isolated socially and viewed by others as different.In addition, they experience an inability by peers and others to understand epilepsy, resulting in judgmental behavior and prejudice.In some cases, the AWEs experience peers taking a distance from them when told about the epilepsy.Consequently, AWEs have a fear of being alone and feel stigmatized, which is one of the negative consequences experienced by talking about epilepsy.Conversely, it can be risky if the peers do not know how to deal with a possible seizure or understand the visible characteristics of epilepsy.
"Yes, everyone around me who I talk to knows about it because it also makes it more reassuring for them if it happens.So they know that's what it is, although it's really tough for them to witness it happen.Some of my friends have seen it many times, but they still get shocked every time because it's intense to witness.You just can't do anything."P18 (18-year-old female) AWEs experience that it can be challenging to find out where, when, and how they best talk about epilepsy.They often need the help of the outside world to share their knowledge and thus also to stand back strengthened because their friends understand AWEs better and can help with seizures.got help from my teacher to tell the other classmates, and then they had some questions, which I answered, but I don't really think they remember it much."P11 (17-year-old female) Several AWEs believe that openness, particularly at school, is crucial.They appreciate the teacher's support and assistance in this regard.AWEs hope this openness will enhance understanding but observe that the class fail to recall the information over the long term.To tell the outside world about their epilepsy, different strategies are described, i. e., selectively disclosing their illness and waiting for a suitable time.However, some AWEs do not find a balance between openness and closure and unwillingly wander off to the outer poles: "It's just not something I want to talk about in any way.It affects me so much psychologically.I've kept most of it to myself because I don't like talking about it, no matter who it is, even close people."P8 (18-year-old female) Some AWEs experience that epilepsy has such a profound effect on their mental well-being that they ultimately refuse to discuss their condition with anyone, believing it to be the best course of action.Expressing their epilepsy is challenging, resulting in these AWEs inadvertently isolating themselves from receiving help, understanding, and companionship.This leads to a sense of loneliness intertwined with their condition, leaving them vulnerable due to their inability to connect when interacting with others.While not all participants feel this intensely, there are several who express different levels of inclination toward concealing their epilepsy.However, for some AWEs, talking about epilepsy is no longer a challenge since they have found themselves right with it.Openness about the disease develops as they become accustomed to having a chronic disease.

Theme 3. Being seen as an individual and not an illness
During consultations, AWEs often experience they are subjected to the doctor's agenda and secondary to the treatment of their epilepsy, although they strive to be seen as individuals in consultations.In addition, AWEs report negative experiences when HCPs use medical language or mostly talk to their parents.Initially, the doctor directs questions toward the AWEs, attempting to engage them, but swiftly shifts focus to the parents with questions and explanations.As a result, they often become somewhat invisible as individuals.Several experience being seen solely for their epileptic disease and not at all concerning the challenges and needs in everyday life associated with epilepsy.

"[.]
Yes, how far one has progressed in the process, whether one can taper off some pills or combine some small pills into one, and getting measured and weighed.That's basically it.[.] Try to think a little outside the box and ask 'how are you feeling?' Instead of saying, 'How is the epilepsy, and how are the pills doing?' P13 (17-year-old female) AWEs emphasize the need to be seen, heard, understood, and more involved during consultations and stress the importance of not being seen only as a case of illness.The discussions about illness, medication, and weight are perceived as a form of detachment or objectification rather than the personal and emotionally deep conversation that is desired.There is a longing for the doctor to engage on a more profound emotional level.For example, AWEs often want to talk about their feelings instead of epilepsy and pills.Several AWEs describe how they usually have thoughts over topics to ask before and during the consultation but are overwhelmed by the doctor's language and focus on their agenda.
"They say all sorts of things I don't understand, so I don't grasp half of what she (the doctor) says.It could be better if there wasn't so much medical jargon.Well, sometimes I've thought about something (to ask), but it's only when I've left the hospital that I'm like, 'I might as well just ask my mom."P15 (18-year-old female) The experience of not being able to follow the conversation or understand what was being said due to medical jargon is present for the AWEs.In some cases, the AWE refrains from asking questions and waits until they are alone with their parents afterward.As a result, AWEs disengage with HCPs when age-appropriate knowledge is not revealed because they need to feel valued and acknowledged.Many AWEs feel they are passive participants in the consultations; some even give up participating and become somewhat indifferent to the consultation.Many AWEs also describe the feeling of not being listened to and included as a person and how difficult it is to say something.
"At the beginning, it was mostly my parents who had the communication, and I was just there [.].I didn't really feel that I was fully included.Even though you might have been 12-13 years old, you still want to feel like you're a part of [the conversation]; you're still in the room, after all.They're talking about you.So it's been like this, when we've left, I've said to my mom, why wasn't this said, because I don't really feel like I could have said anything.So it all comes a bit later, and then it's like my mom has written or called [the doctor] and said, "Just listen, this and this has happened."So, it sort of goes over one's head, I think, and then I believe one withdraws a bit or refrains from saying something, but then it all comes to you later."P19 (18-year-old female) AWEs wish to be more involved in the appointments.They understand their role in the clinical appointment as being involved and asking questions but end up powerlessly with a feeling of alienation.The presence of a parent in consultations can have positive and negative impacts on conversation, knowledge exchange, and involvement.Primarily, the parents are experienced as valuable in providing safety.However, AWE also experiences a limitation if the HCPs are unaware of listening and involving AWE and only talk to the parents.As a result, AWE perceives parents and HCPs as reducing their interaction and contribution to appointments because they dominate the discussion.However, they desire to be equally valued and acknowledged as their parents and participate in discussions age-appropriately.
Experiences of not being taken seriously, absence of direct communication, and feeling disregarded in consultations can significantly influence AWEs' future perception of importance in conversations in subsequent consultations.For example, they wish to be addressed in an age-appropriate manner.Otherwise, it affects AWE's commitment to the long-term patient process and can inhibit engagement in consultations.Some AWEs notice a signal that they are not heard, irrespective of their maturity, and perceive that as a signal of lack of autonomy, leading them to withdraw from active participation.
"But it also took a long time again before there was actually someone who listened because I hadn't been involved.They should have engaged in that dialogue, I mean, they need to be better at meeting the patient at eye level and speaking to them, giving space."P8 (18year-old female) Several AWEs feel overlooked and not included in the consultation and do not feel that they can be asked about very much.It is a form of pseudo-involvement, but no space is given to AWEs.However, the prospect of taking responsibility for your own life when the epilepsy is active is, for some AWEs, experienced as overwhelming, challenging, and unsafe with the loss of parental collaboration.
"That [responsibility] is something I'm a bit afraid of, too, because I find it difficult.[.].Yeah, when everything is a bit downhill, I also find it hard to think that in two years, I'll have to manage most things on my own, and it's just hard to think about that when I'm feeling so bad right now." P2 (15-year-old female) During the interviews, the AWEs express concerns about transitioning from pediatric to adult ward and assuming responsibility for their life and illness.AWEs feel overwhelmed while going through difficult phases where epilepsy dominates.AWEs know that their parents often assist significantly in their day-to-day activities and need preparation for the adult ward transition, e.g., responsibility and expectations.
When asked about their experiences with transition, the AWEs respond by indicating that they have not been engaged in discussions regarding the transition to the adult ward and expressing a desire to be informed about this process."I've been missing clearer answers about what's going to happen, especially with this transition.What exactly is going to happen, we had to ask about it more.I don't feel like we've really been given any answers as such."P13 (17-year-old female) The following field note shows that the AWEs and their family occasionally inquire about the transition to the adult ward, mainly concerning responsibility and expectations.The patient's sister asks the pediatrician, "What's going to happen now?" regarding the transfer to the adult department.The doctor briefly responds that a referral will be sent to the adult department, the patient will be digitally summoned, and if any issues arise, the patient should continue calling the pediatric department.The doctor explains that it will likely proceed similarly to the pediatric department, with periodic summons.The patient asks when she can expect to be transferred to the adult department, and the doctor replies that it's not up to her, but maybe in about six months."If things go well, meaning you tolerate the medication and have no seizures, there won't be many check-ups."Then the doctor continues, saying, "Well, do you want to be weighed today?You must be asked since you're an adult now," and proceeds with the consultation.(Field note Pediatric Department, P8) Patients and relatives strive to navigate the upcoming transition.Nevertheless, the responses provided by the doctors are frequently characterized by formality, practicality, and conciseness, lacking substantial information regarding the expectations, identity, capabilities, and timelines associated with the adult department.Furthermore, the observations reveal that while doctors effectively attend to the physical challenges of epilepsy, they less frequently address the emotional strain.Often, there is silence regarding how patients cope with their psychosocial needs in everyday life transitioning to adult care.Observations reveal that HCPs elude the issue of transitioning to the adult ward unless prompted by inquiries from parents or AWEs.It often results in the patients and their families being caught off guard or experiencing a sense of surprise when the topic is ultimately touched during the concluding consultation in the pediatric ward.To avoid AWEs experiencing taken aback or disappointed when transferring to the adult department, AWEs request a vote of expectations.
"And also, it's a really good idea that at the last check-up at the pediatric department, they might bring someone from the adult department over and vice versa.When one leaves from there, there's still someone there, so the first time you go over, you actually feel safely handed over without suddenly feeling done and getting an appointment for the next time there [at the adult department]."P11 (17-year-old female) When AWEs express their wishes regarding the necessary preparations for their transition to the adult ward to feel secure, their ideas include the need for a warm reception, guidance during the transfer process to the adult department, the opportunity to establish familiarity and potentially initiate a partnership for care prior to the initial consultation.Simultaneously, the AWEs also desire to bid a formal farewell to the pediatric department.Regrettably, many AWEs encounter a lack of discussion regarding the transition during the most recent consultation at the pediatric department, resulting in a disheartening and unsettling transition.

Discussion
This study's findings indicate a palpable sense of vulnerability among AWE, who express the need for their everyday life challenges to be acknowledged and addressed in healthcare settings.Further, our findings reveal that the dichotomy between personal identity and being perceived as defined by epilepsy significantly impacts psychological well-being.AWE might grapple with feelings of frustration, isolation, or inadequacy as their efforts to establish a unique identity are overshadowed by societal labels associated with their condition.Seizures play an intrusive role in everyday life as a struggle to fit in and keep up with peers and the challenging balance of disclosure.The transition from adolescence to adulthood adds another layer of complexity.It acts as a source of considerable psychosocial distress with negative impacts on the quality of life as AWEs undergo the crucial process of identity and autonomy formation.
The main findings are discussed and interpreted with Judith Spiers's Vulnerability theory [57], Afaf Meleis's Transition theory perspective [35], and relevant research results within the field.Hence, this discussion leverages the Vulnerability framework, combining emic and etic approaches proposed by Spiers [57], to comprehensively understand the vulnerabilities faced by AWE transitioning from pediatric to adult hospital care.Spiers distinguishes between vulnerability as understood by the individual (the emic perspective) and vulnerability perceived by others outside the experience (the etic perspective).The emic perspective provides an insider's view, allowing us to understand the subjective experiences and perceptions of AWEs during healthcare consultations and emphasizes the emotional burden of feeling isolated and alone.AWEs reveal a significant concern about being overlooked beyond their medical condition in appointments.The desire to be heard and understood as individuals rather than solely defined by their epileptic disease is a recurring theme.During consultations at the hospital, AWEs express the need to focus more on their everyday life challenges and be more involved, emphasizing the importance of not being seen only as a case of illness.This is similar to other studies showing that AWEs experience a feeling of not being heard or meaningfully involved in clinical appointments and that psychosocial care is underprioritized [58][59][60].
Additionally, the emic lens highlights the vulnerability experienced transitioning from the pediatric to the adult ward.We find that there often is a lack of alignment between the concerns of the AWEs and the HCP's agenda, supported by Lewis et al. [15], who find that HCPs tend to follow a routine pattern to gather information mostly of interest to HCPs.The failure to address AWE's concerns during consultations jeopardizes their ability to assume responsibility for their healthcare transition.Consequently, this could result in negative consequences such as increased risk of vulnerability and being lonely with their illness because HCPs fail to talk about epilepsy from an everyday perspective.Moreover, the AWEs also report worrying about facing the unknown, communicating with HCPs, self-management, and assuming responsibility for their healthcare management.These findings are consistent with research from diverse pediatric chronic illnesses, including cystic fibrosis [61], congenital heart disease [62], and cancer [63], pointing at the importance of the adolescent's ability to communicate wishes and needs freely with confidence and self-esteem and highlighting their psychosocial and practical needs.Other studies also find that AWEs desire more significant involvement in the transition process, and some perceive a lack of recognition of the importance of their role [64,65].
The etic perspective provides an outsider's analysis, offering insight into the broader sociocultural and medical context surrounding the experiences of AWE in healthcare consultations.AWEs feel subjected to the doctor's agenda and secondary to the treatment of their epilepsy, although they strive to be seen as individuals in consultations.Further, several experience being seen solely for their epileptic disease and not being seen at all concerning the challenges and needs in everyday life associated with epilepsy.This is similar to a study by Patterson & Cam O. Abildgaard Hansen et al. [66] showing that AWE wants to see HCPs who will listen to them.Sometimes, the problem is amplified when HCPs mostly talk to their parents as questions are quickly addressed directly and explained to the parents.As a result, the AWEs often become unintentionally undermined by HCPs and somewhat invisible as individuals.This is consistent with findings by Beresford et al. [59], showing that some HCPs exclude adolescents from the consultation by focusing their attention and information-giving on the parents, resulting in the adolescents' passive involvement.In our study, numerous AWEs encounter challenges in keeping up with conversations or comprehending the content because of medical terminology.Occasionally, this leads to their hesitation in seeking clarification through questions.This is similar to a study by Wilson et al. [67] showing that AWEs report negative experiences when HCPs use medical language that prevents them from asking questions about their epilepsy.Fegran et al. [68] describe the importance of creating supportive environments that emphasize an adolescent's individuality beyond their medical condition.From an etic standpoint, our findings reveal a discrepancy between AWE's concerns and the priorities of HCPs.The distinct agendas create a power dynamic that further amplifies the vulnerability experienced by AWEs.According to Coyne et al. [69] and Stroud et al. [70], the role of HCPs is pivotal in supporting AWEs to a seamless transition and critical for their long-term health and well-being, which the findings from our study support.
We understand transition as a concept, a process over time, constituting different natures, conditions, and response patterns, and not a single state that modifies an individual's self-perception and confronts their identity due to multiple concurrent changes [34].According to Meleis (2010) [35], adolescence is a pivotal developmental transition period focusing on shaping a personality marked by a progressive development of self-identity and growing independence.Hence, AWE's needs, expectations, and abilities can create a period of vulnerability [34].The developmental transition interacts with the health-illness transition, e.g., self-management and role changes, and situational transition, which includes geographical changes, such as changes in where a young person lives when they move away from home or by relocation from pediatric care culture to another different adult care culture [35].The analysis reveals that AWE has a fear of social isolation due to epilepsy, coupled with potential stigma, causing an impact on AWE's self-esteem and mental health.
Moreover, navigating relationships and social interactions may become challenging, creating feelings of alienation or loneliness.This is consistent with international research, which emphasizes epilepsy's impact on both health and overall well-being, impeding the progression of independence, social functionality, peer relationships, and selfesteem [71][72][73][74].Concerns about autonomy and managing the condition autonomously become focal points during this phase [75].In our study, the AWEs express how transitioning from pediatric to adult care can be challenging and an emotional process creating fear and uncertainty about the future, consistent with previous research [76,77].Sezgin et al. find that AWEs sometimes report needing assistance and feeling overwhelmed as more tasks shift to them [78].A point that can be made from our findings is that navigating epilepsy in everyday life presents a multifaceted challenge in coping with day-to-day aspects (for example, how to manage at school, deal with peers, cope with negative emotions, and maintain a positive approach to life).AWEs are reported to have insufficient coping strategies to deal with specific transitional problems during the development of autonomy and independence [79,80], consistent with our study's findings.Practical barriers arise in everyday activities like sleep schedules or restrictions on certain activities due to safety concerns, such as driving, participating in sports, alcohol, or going out alone.The barriers can limit an individual's sense of independence and normalcy.Other studies also find that AWEs are annoyed to be under surveillance, express a need for privacy, and sometimes struggle for independence [60,76,78].However, the findings imply that some AWEs have self-imposed restrictions and precautions, which can indicate that the AWE put on a kind of straitjacket of caution in the form of having the risk of seizures in the back of their minds equivalent to a mental straitjacket in their everyday life.
In the context of transitions theory, the findings of our study constitute essential knowledge, improving our understanding of the nuances and crucial aspects of this transition.From Meleis' transition theory perspective [35], "knowledge is empowering to those who develop it, those who use it, and those who benefit from it," which highlights the importance of HCP's focusing on therapeutics (e.g., interventions and strategies) to prevent ill-being and to enhance the wellbeing of AWEs undergoing transition, promoting successful adaptation to new roles and everyday life situations.

Strengths and limitations
A strength of this study was the engagement with a large sample of AWEs, who are known to be highly challenging to recruit for research studies at this age and stage of their lives.Few qualitative studies with this group of AWEs directly explore experiences and needs transitioning from pediatric to adult care.Our population age range was broad in recognizing transition as an extended process encompassing different developmental stages.Another strength is that the initial observations from participant engagement informed the individual interview process, enabling the posing of clarifying questions grounded in a contextual comprehension of the field.An additional strength lies in integrating both interviews and participant observations in the study design.
Limitations include the small number of post-transfer patients and the prevalence of females in the study compared to males, with the majority falling within the age range of 16 to 18 years, preventing insights into broader patient experience.Another limitation of this study lies in the uniform collection of data across the same outpatient clinics with similar ethnic backgrounds, potentially affecting the transferability of the findings.An additional limitation is that parents attended ten out of fifteen interviews.This may have constrained the extent to which the AWEs could respond freely; however, their involvement was predominantly passive, allowing ample space for the AWEs to express themselves.

Future implications for practice
In light of our findings, HCPs need to increase the focus on the psychosocial aspects of the condition and facilitate open and honest communication, aiming at holistic care that encompasses emotional support, educational guidance, and peer connections.Developing preparation interventions and improving the handover between the different healthcare settings is essential to reducing AWEs' difficulties during the transition period.A multidisciplinary approach involving HCPs, family support, education systems, and societal understanding is crucial to empower AWEs to live fulfilling lives despite these challenges.Understanding the AWE's perspectives and needs on transition is instrumental in developing effective interventions that will be perceived as relevant and informative.Thus, longitudinal studies with repeated assessments of AWE transition experiences that explore the long-term impacts of transition experiences on AWEs are needed.This research can provide insights into the factors influencing successful transitions, identify challenges faced over time, and inform the development of targeted interventions.

Conclusion
AWEs are in a vulnerable position as they struggle to navigate epilepsy in everyday life, as it encompasses a myriad of challenges that extend beyond medical management.It involves a delicate balance between medical adherence, managing social and emotional impacts, navigating educational settings, adjusting lifestyles, finding effective coping mechanisms, and transitioning into adulthood.The challenges of transitioning to adult care are experienced with concerns about growing O. Abildgaard Hansen et al. independence, increased self-identity, managing social and emotional impacts, navigating school settings, and adjusting to day-to-day living.Empowering AWEs to be seen as individuals with unique personalities, needs, and capabilities requires a concerted effort from HCPs.By fostering a culture of understanding, acceptance, and inclusivity, we can create environments that celebrate the AWE's individuality, offering them the support and encouragement needed to thrive beyond the constraints of their illness.We advocate for a new approach where we create coherence from pediatric to adult hospital care in the transition phase, enhancing our efforts to prepare AWEs for a smoother transition.The focus during consultations should be on involving the AWE in decision-making, focusing more on their everyday life needs, and trying to see the person before the illness.HCPs need a systematic approach with holistic care that acknowledges AWEs' personal goals, interests, and aspirations alongside medical needs, as it can foster a sense of agency and empower AWEs to navigate their identity confidently.These strategies will improve the overall care experience and prepare AWEs for adult-care transition.

"
[.]  well, I kind of do what I want.I mean, they [parents] say I can drink but preferably not too much, and it can trigger it.But, you know, there's always a risk of [having seizures], and then I have to face the consequences.And they have said, 'You shouldn't drink so much,' and I was sort of indifferent, but I don't think they took it too hard."P20 (20-year-old female) "[.]  Of course, one should be open about it because I am at my current school because it's important that people know.If, for example, I seem quiet one day, it's because I have a headache or I'm exhausted.But it was also difficult, but I did it in a way that I actually O. AbildgaardHansen et al.

3: Condensation Fear of seizures as a limiting factor
"I withdraw from things and think, […] so I'll just stay home today.The fact that I can't really exercise in the same way [as before epilepsy], I keep hitting myself over the head with that.[…]I don't feel like I can exercise if I have a seizure."P19(19 yearold-female)"If my friends have started getting their driver's licenses and say, "I just got my driver's license and stuff," […], it doesn't affect me a ton, but still, it's a bit annoying that they can get into a car and drive while I can't.Yeah, I mean, it's probably those opportunities others have that I don't."P20 (20-year-old female)

Table 2
Characteristics of the participants.
I feel that sometimes I'm afraid to do things on my own because I've been influenced by: 'You can't do that.Now, be careful.'So now I'm quite scared to do things by myself.But sometimes, I just feel it was too much.So, I'm a bit afraid that in the future, I won't dare to do things on my own because I feel that I've been frightened by everything everyone has said."P11 (17-year-old female) " They're like, 'Have you remembered this, and what if you have a seizure?'And constantly asking, 'Are you okay?' It suddenly becomes more of what they're thinking about."P8 (18-year-old female)