Living with epilepsy in adolescence and young adulthood transitioning from pediatric to adult hospital services: A systematic review and meta-synthesis of qualitative studies

Background: Transition is characterized by developing greater self-identity and growing independence, but adolescents dealing with chronic illnesses encounter health-related and


Introduction
Epilepsy is the most prevalent neurological illness among adolescents and young adults (hereafter adolescents) globally, with an estimated rate of five cases per 1,000 people and an incidence of around five to seven cases per 10,000 children [1,2].Living with epilepsy during adolescence is more than just managing recurring, uncontrollable, and unexpected seizures.The illness also impacts mental well-being, social inclusion, quality of life, and care beyond physical symptoms [3][4][5][6][7].During adolescence, epilepsy can be linked to a range of challenges and symptoms, such as anxiety, sadness, low self-esteem, comorbidities, learning difficulties, executive dysfunction, and behavioral issues [8][9][10].
As noted by Meleis (2010) [11], a transition is characterized by the development of greater self-identity and growing independence.However, adolescents dealing with chronic illnesses may also encounter health-related and situational changes during this period [11].The developmental transition is influenced by the health-illness transition and situational transition, which involves changes in location, such as moving away from home or transitioning from pediatric to adult care.
Despite the many suggestions made in recent years, the shift from pediatric to adult care continues to pose difficulties in many chronic diseases [12][13][14].During the transition, adolescents living with a chronic disease have concerns about becoming independent and assuming responsibility for their healthcare management, such as managing their medications and treatments, building relationships with new healthcare professionals (HCPs), leaving the familiar pediatric setting, and losing the support and care they have grown accustomed to, and variations in pediatric and adult ward cultures, e.g., differing practices, attitudes, and support systems [15][16][17].In addition, the method and timing of transfer may trigger a range of emotions, including anxiety, fear, and uncertainty [18][19][20][21].Betz et al. [18] highlight the complexity of the transition process and the desire to tailor it to individual needs because adolescents need to learn how to advocate for themselves and make decisions about their healthcare, which can be a daunting task for young people still developing independence.
Although transition and transition care are recognized as critical, most practical models and transitional programs for organizing transition care have been developed and evaluated through quantitative analysis or focusing on the effectiveness of health outcomes [22][23][24][25][26][27].It is essential to complement this research with qualitative evidence of firsthand experiences of AWEs to reflect the holistic perspective.For AWEs, thus far, three previous reviews with a synthesis of the qualitative research have focused on AWE's experiences with epilepsy [28][29][30].Bai et al. [28] referred to the different strategies AWEs develop to manage epilepsy and associated problems.Chong et al. [29] described strategies to improve patient outcomes and QOL.Harden et al. [30] focused on the family's personal experiences with epilepsy.In addition, other reviews have addressed specific issues of living with epilepsy, such as information needs [31], quality of life [32], self-management [33,34], stigma [35], disclosure [36], or family communication [37].However, the age range is broad in all reviews, ranging from children aged four to adults aged thirty-six, and parent's experiences are included.None of the above reviews provide a deep and comprehensive overview of adolescents' experiences and needs between the ages of 12 and 22.
To the best of our understanding, no existing or ongoing systematic reviews explore and aggregate the body of qualitative evidence about the subject area.Therefore, we conducted a systematic review and metasynthesis to synthesize the qualitative evidence related to AWEs' experiences and needs transitioning from pediatric to adult hospital care to understand and capture a more profound understanding of adolescents' challenges and needs and guide clinical practice.
Transition refers to the preparation period before and the experiences after transferring from pediatric to adult healthcare.We interpret the concept of transition as a time-based process involving diverse natures, conditions, and response patterns rather than a singular state [11].

Design
The systematic review and meta-synthesis were performed following the JBI methodology for conducting systematic reviews of qualitative evidence [38], employing the meta-aggregation approach [39], and according to an a priori-published protocol registered in PROSPERO (the International Prospective Register of Systematic Reviews) (record ID: CRD42022352486).

Search strategy
The systematic literature search using all identified keywords and index terms was undertaken on August 19, 2022, with no imposed start date or specific period across all included electronic bibliographic databases: PubMed (Medline), CINAHL (EBSCO), Scopus, Embase (Ovid), PsycINFO (Ovid), and ProQuest Dissertations & Theses Global.The search was updated on April 10, 2024.We conducted additional manual searching through backchaining of the reference lists of the studies selected for critical appraisal.A detailed list of search strategies for individual databases is provided in Additional file 1.

Eligibility criteria
This review considered studies encompassing the following criteria: (i) studies utilizing qualitative research methods, encompassing several design approaches such as phenomenology, grounded theory, ethnography, action research, case studies, and feminist research.(ii) qualitative data from qualitative descriptive or mixed studies.(iii) adolescent diagnosed with epilepsy in any context or healthcare setting.(iv) studies published in Danish, English, German, Norwegian, and Swedish languages.(v) studies that explored AWEs' experiences, views, expectations, and needs in the transition from pediatric to adult hospital care.For this review, we characterize adolescence and young adulthood (hereafter adolescence) as the life phase spanning from 12 to 22 years, encompassing distinct physical, psychological, and social development [40].Studies that addressed adolescents with other chronic diseases and where AWEs could not be differentiated were excluded.

Study selection
The selection process adhered to the PRISMA and meta-analysis guidelines [41].After conducting the search, all detected citations were collated and uploaded into EndNote vX9 (Clarivate Analytics, PA, USA), and any duplicate citations were eliminated.The remaining citations were imported into Covidence (Veritas Health Innovation, Melbourne, Australia), where two independent reviewers (OAH, JBP) then screened titles and abstracts for assessment against the inclusion criteria for the review and reviewed the full text of eligible studies.Full-text studies that did not meet the inclusion criteria were excluded, and the reasons for their exclusion can be found in Additional File 2. Any reviewer disagreements were resolved through discussion or arbitrated with a third reviewer.

Quality appraisal
Two independent reviewers with master's degrees, who were proficient in English with experience in systematic reviews (OAH, JBP), critically assessed eligible studies for their methodological quality using the standard JBI critical appraisal checklist for qualitative research (JBI-QARI) [38].The ten questions in the critical appraisal tool were answered for each of the studies with a "yes," "no," or "unclear" response.Any reviewer disagreements were effectively addressed by deliberation or involving a third reviewer, JC or ML.

Data extraction
Two independent reviewers (OAH, ML) extracted data from the included studies using the standardized data extraction tool adapted from JBI SUMARI [38] (Additional file 3).The retrieved data included specific details concerning phenomena of interest, populations, study methods, and outcomes of significance to the review aim [38].From all 21 studies, if possible, a corresponding illustration related to each finding was extracted to illustrate the participants' voices.The findings were rated according to JBI levels of credibility as unequivocal, credible, or not supported.

Data synthesis
The characteristics of the included studies were succinctly summarized and described descriptively, employing the three-step meta-aggregation approach [38,39].The process entailed synthesizing or aggregating research findings through the consensus of two reviewers, resulting in a compilation of statements expressing this synthesis by compiling and categorizing the findings based on their similarity in meaning.The categories of experiences and needs were next submitted to a synthesis process, resulting in a unified and comprehensive set of synthesized findings.These findings serve as a foundation for evidence-based practice.The reviewers (OAH, ML) continually moved forward and backward between findings, categories, and synthesis to ensure an overall understanding and similarity in meaning.

Study selection and quality appraisal
The PRISMA flow diagram in Fig. 1 presents an overview of the search results, study selection, and inclusion process [42].A comprehensive database search of the literature identified 3,985 potentially relevant studies, of which 1,110 duplicates were removed.Manual searching through backchaining of the references of articles resulted in seven additional studies.A total of 2,882 studies were screened by title and abstract against the inclusion criteria; 43 studies were retrieved for full-text assessment for eligibility.Twenty-one studies [43][44][45][46][47][48][49][50][51][52][53][54][55][56][57][58][59][60][61][62] were finally included in this review.Table 1 presents the quality assessment of the 21 studies.Except for three studies, all studies fulfilled the ethical criteria.Hence, the included studies provide suitable and credible findings based on relevant and transparent methodology.However, thirteen studies did not state the researchers' cultural or theoretical position.Eight studies addressed the researchers' influence on the research and vice versa.

Study characteristics
A description of the characteristics of the selected studies is presented in Table 2.The 21 studies included in the present review were conducted between 1996 and 2022 and included 515 participants.All studies were written in English and reported findings from Israel [43], Ireland [44], United Kingdom [45,51,53,55,56,60,61,63], Singapore [46,47], Sweden [48], Canada [49,50,59], Finland [52], United States of America [54,57,58], and Malaysia [62] representing predominantly Caucasians, and very few were Asian.The sample size varied from four to 63, and the age ranged from six to 30 years.The participants' sex was mentioned in all but one study [53], and the male-to-female ratio was  All included studies used the qualitative methodology.Twelve studies [43,44,46,47,52,54,56,57,[60][61][62][63] were based on semistructured interviews, three were based on both individual and focus group interviews [45,53,58], four were based on semi-structured interviews with an open-ended questionnaire [48][49][50]59], one was based on semi-structured interviews and field observations [51], and one study [55] was based on focus group interviews.Research settings consisted of pediatric epilepsy clinics, outpatient clinics, neurology clinics, and both pediatric and neurology hospitals.Two studies [53,63] were undertaken in a program where a transition clinic was established.

Results of synthesis
The meta-synthesis of included studies for this review generated five synthesized findings developed from 14 categories and 70 findings extracted from the 21 included studies.The five synthesized findings are: "Feeling different from others striving to address the impact of epilepsy in everyday life"; "The transition from pediatric to adult care − a problematic intersection point"; "The family's role − support or parental overprotectiveness"; "Seeking knowledge and being familiar with epilepsy supported by healthcare professionals and technologies"; "Development of independence and responsibility through involvement and support from healthcare professionals and parents."The number of findings, categories, and synthesized findings are presented in Table 3. Fig. 2 shows the process of meta-aggregation, including the relationship of the findings, categories, and synthesized findings.See Additional file 4 for a list of all study findings and illustrations.Below, the five synthesized findings and accompanying subcategories are presented.

Synthesis 1: Feeling different from others striving to address the impact of epilepsy in everyday life
AWEs experience a heightened sense of difference, both socially and physically, due to the environment's exaggerated concerns and unwanted reminders of their illness.Moreover, they perceive that a lack of knowledge of epilepsy and its unpredictable nature causes prejudice and rejection by society and peers, which contributes to a reluctance to talk about their illness.At the same time, they understand themselves as being normal and wish and strive to be treated like any other adolescent.

3.3.1.1.
Wanting to be normal but feeling different.AWEs want to be normal but are aware of their otherness and of being different.Excessive displays of concern from others act as unwanted reminders of their illness and magnify the notion that they are different [44,[46][47][48]60,63].

"… don't keep asking me how I am … [it's] reminding me that I have a medical problem
… asking is a way of showing concern, but also a reminder … Asking in a normal tone is ok, but if it's over-concern, or overworried tone, then it's like there is something wrong with me." [47] (p. 246)"So I have epilepsy, other people may have other things.Everyone will have their strengths and weaknesses.So, it's like we are different, but also same."[46] (p. 341)3.3.1.2.Feeling stigmatized -Viewed by others as different, weird, and contagious, causing reluctance to disclose.Due to their epilepsy, the adolescents feel labeled and stigmatized.As a result, some AWEs are isolated and socially viewed by others as different, weird, and contagious.Thus, they are reluctant to disclose their epilepsy to peers and others because they experience an inability by peers and others to understand epilepsy, resulting in judgemental behavior and prejudice [44,49,51,[53][54][55]62].
"Someone came up to me the other day and they said, do you remember that time when you had a fit and I said 'no' 'well, we call it a funky Y=yes, N=No, U=Unclear.Q1 = Is there congruity between the stated philosophical perspective and the research methodology?Q2 = Is there congruity between the research methodology and the research question or objectives?Q3 = Is there congruity between the research methodology and the methods used to collect data?Q4 = Is there congruity between the research methodology and the representation and analysis of data?Q5 = Is there congruity between the research methodology and the interpretation of results?Q6 = Is there a statement locating the researcher culturally or theoretically?Q7 = Is the influence of the researcher on the research, and vice-versa, addressed?Q8 = Are participants and their voices adequately represented?Q9 = Is the research ethical according to current criteria or, for recent studies, and is there evidence of ethical approval by an appropriate body?Q10 = Do the conclusions drawn in the research report flow from the analysis or interpretation of the data?The nuclear family was defined as the family unit comprising the child's parent(s)/guardian (s) and sibling(s).
Findings from the study demonstrate that CWEs face challenges when disclosing their epilepsy diagnosis to those external to the nuclear family.Disclosure decisions present a range of concerns for CWE as they grapple with issues such as normalcy, the reactions of others, their perceptions as well as other's perceptions of epilepsy, and the unique challenge that the invisibility of their condition denotes.CWE also encounters difficulties in understanding and explaining their complex neurological condition.Concurrently, their peers contend with similar challenges surrounding comprehension of the condition.These components serve as barriers to disclosure for some CWEs and promote the adoption of concealment or selective disclosure management strategies.
To address some of the challenges surrounding disclosure, there is a need for (i) the adoption of a more holistic approach in attempts to resolve epilepsy-related stigma and misconceptions that encircle the condition and increase public knowledge and the visibility of epilepsy within a public forum; and (ii) the provision of child-directed healthcare services and meaningful engagements with healthcare providers to enhance CWE's ability to represent their condition to others verbally.Five conditions: juvenile chronic arthritis (17), cystic fibrosis (11), diabetes (12), epilepsy (10), and Duchenne muscular dystrophy (13).
The severity of intellectual disability is not defined hinder or facilitate their use of healthcare professionals as an information source.
in addressing these needs.Participants perceived the following aspects of an adolescent-doctor consultation as important to engendering effective communication.First, they wanted a choice about who was present during the consultation (for example, parents and medical students) and whether or not the doctor was male or female.Second, a sense of equality in terms of power relations between individuals present was needed.To construct a vivid description of the everyday experiences of adolescent girls with epilepsy and to determine whether or not elements of stigma were present in narratives in day-today living.
The young women in this study did not feel they were fundamentally different from their peers, except for having seizures.They viewed the seizure activity as a minor difference from peers, similar to having another type of illness or being labeled a "jock," a "nerd," or a musician.However, elements of stigma were present in their day-today life, e.g., affected how they used disclosure management techniques to disclose their illness, and most were having academic difficulty.Like most young women, they were renegotiating relationships with their parents to gain trust and assume more responsibility for their safety and well-being.This transition seemed to be occurring smoothly for all the young women in the study.

3.3.1.4.
Coping with the consequences of epilepsy -A matter of addressing the impact on everyday life.Due to fatigue and memory loss, AWEs are obstructed from participating in academic endeavors and fully participating in age-related physical and social activities.AWE uses coping strategies, like finding support, feelings of control, or experimenting, i. e., not taking their medication or following the pieces of advice from HCP for testing and learning their limits [45,[48][49][50]."I wish to finish it quickly.I'm waiting for the moment when I'll speak about epilepsy as history."[43] (p. 1181)

Synthesis 2: The transition from pediatric to adult care -A problematic intersection point
AWEs feel ill-prepared for the transition to adult care because they feel they will lose the familiarity of being known and have to start all over again by talking about their epilepsy and challenges.Some see the detachment of the parents as an advantage and grow to care for the consultation themselves.Others think it is challenging and unsafe with the loss of parental collaboration.

3.3.2.1.
The significance of continuity transitioning from pediatric to adult care.AWEs find the transition from pediatric to adult care challenging due to their limited familiarity with HCPs in adult services, unnecessary repetition, and the change in their responsibilities.Furthermore, AWEs express diverse perspectives on the anticipated loss of parental involvement [45,59,61,63].
"It would be better just to have one doctor so we could move on to different parts of epilepsy instead of getting the same questions again and again."[45] (p. 175)"I think it will be much harder because my mum and my family know what they are doing.So transferring I think it will be a bit different for me because I'll have to make my own way to hospital and book appointments and stuff like that."[61] (p. 7)

Feeling ill-prepared for the transition.
AWEs express that they are ill-prepared for the transition and the sudden exclusion of parents [59,61,63].
"I'd just seen him say no" to my mum, and that was quite upsetting to see that your mum's not part of it…" [61] (p. 7)

Synthesis 3: The family's role -Support or parental overprotectiveness
AWEs experience distress relating to daily life restrictions and constant surveillance by their parents and use different strategies, e.g., bargaining, reasoning, and persuading to avoid overprotection and parental control.On the other hand, AWEs experience positive relationships and family support as necessary to provide opportunities and challenges while adapting to and mastering life with epilepsy, as well as restrictions and adjustments.

The importance of support from the family in mastering living with
epilepsy.The family's support influences AWEs to master and control epilepsy.The willingness to compromise allows parents and AWEs to manage their worries [46,47,63].[46] (p. 344)

Handling restrictions placed by parents.
Restrictions and constraints placed by parents on participation in everyday life activities cause major distress for many AWEs, and in some cases, they discontinue social activities.Some AWEs express anger over such parental control that implies a loss of autonomy and privacy [46,47,49,53].
"I wanted to go out [with my friends] more often, and then initially they kept saying no… And worse, all these places have water.I told my parents I won't be swimming, but they still said no.Then I was angry."[46] (p. 344)"I am not allowed to be left alone at home by myself … I have no privacy at all … if I am left alone [and] one [seizure] hits … I am sick and tired of it … I want some freedom, I want to be able to go out with my teenager Table 3 Synthesized findings: Meta-aggregation of qualitative research findings.

Categories
Synthesized finding 9 Wanting to be normal but feeling different

Feeling different from others, and striving to address the impact of epilepsy in everyday life 10
Feeling stigmatized − viewed by others as different, weird, and contagious, causing reluctance to disclose 7 The unpredictability of seizures and side effects from medication the cause of fear and distress in everyday life 6 Coping with the consequences of epilepsy − a matter of addressing the impact on everyday life 4 Hoping the epilepsy will disappear 4 The significance of continuity transitioning from pediatric to adult care

The transition from pediatric to adult care − a problematic intersection point 3
Feeling ill-prepared for the transition 3 The importance of support from the family in mastering living with epilepsy

Synthesis 4: Seeking knowledge and being familiar with epilepsy supported by healthcare professionals and technologies
AWEs seek knowledge and want to communicate with HCPs by using technologies, giving them opportunities to be more anonymous and able to discuss what they find in order to understand it.AWEs are comforted and feel more at ease when communicating with HCPs who avoid using medical jargon and give thorough knowledge about their epilepsy.

3.3.4.1.
Seeking and sharing knowledge of epilepsy.AWEs use the internet to seek knowledge and find this medium easier than face-to-face contact, but it can be hard to understand [52,58,62,63].
"… the most important support network is the chat rooms.I hang on there a lot.Nobody knows me, I can share freely my feeling and opinions … I do not need to be afraid that I lose my face….…I can chat any time, just when I need it."[52] (p. 291)"…is awesome because you can find anything.Like you will definitely not feel alone on Reddit.You'll find someone that's thinking the same things, and I'm not just talking about epilepsy."[58] (p.e31)

Conscious of how healthcare professionals give information.
When AWEs experience medical jargon, they are prevented from getting knowledge of their illness.On the other hand, accurate information gives AWEs peace of mind [48,53,63].
"l have changed doctors now.We didn't get on very well, I told my mother.My mother is a nurse, and he only talked to her and used hospital language, and l sat there and didn't understand a thing."[48] (p. 46)

Synthesis 5: Development of independence and responsibility through involvement and support from healthcare professionals and parents
AWEs are aware of the importance of feeling valued in consultations through involvement and support from HCPs and parents, thereby developing confidence, independence, and responsibility in participating in discussions surrounding their epilepsy.

3.3.5.1.
Reasons for engaging or disengaging with healthcare services.Ageinappropriate communication can inhibit AWE's engagement in consultations; they must feel valued and acknowledged.The younger age band can feel inferior to the doctor and the parents in discussions.Over time, AWEs develop the confidence to participate in discussions concerning their epilepsy [45,51,53,60,61].
"That was the initial shock when you moved over, and I think when he did just talk directly to me, it was overwhelming.I didn't quite know what to say." [61] (p. 5) "Well, I never actually got the word out because I was waiting for when it stopped, for when people had stopped talking for a minute, but then, of course, others were starting again.I didn't want to interrupt."[51] (p. 6)

Making room for the adolescent in appointments at the hospital.
AWEs experience that parents and HCPs dominate appointments, leading to a decreased sense of involvement and contribution.Consequently, AWEs express a desire for increased participation in these appointments [45,51].
"I go to see him, but not sure why 'cos mum talks about things."[45] (p.

Parents and healthcare professionals' roles in consultations.
Synthesized finding #1 1. Wanting to be normal but feeling different AWEs want to be normal but are aware of their otherness and of being different.Excessive displays of concern from others act as unwanted reminders of their illness and magnify the notion that they are different.

Feeling stigmatized -viewed by others as different, weird, and contagious, causing reluctance to disclose
Due to their epilepsy, the AWEs feel labeled and stigmatized.As a result, some AWEs are isolated and socially viewed by others as different, weird, and contagious.Thus, they are reluctant to disclose their epilepsy to peers and others because they experience an inability by peers and others to understand epilepsy, resulting in judgemental behavior and prejudice.

The unpredictability of seizures and side effects from medication -the cause of fear and distress in everyday life
Epilepsy gives rise to a lack of control due to the unpredictability of seizures and causes fear and distress in everyday life.Furthermore, AWEs experience side effects from the medication, such as tiredness, sleeping disorder, concentration difficulties, and memory impairment.

Coping with the consequences of epilepsy -a matter of addressing the impact on everyday life
Due to fatigue and memory loss, AWEs are obstructed from participating in academic endeavors and fully participating in age-related physical and social activities.AWE use coping strategies, like finding support, feelings of control, or experimenting, i.e., not taking their medication or following the pieces of advice from HCP for testing and learning their limits.

Hoping the epilepsy will disappear
AWEs have a strong wish for epilepsy to disappear and anticipate they will grow out of their epilepsy.
Synthesized finding #2 1.The significance of continuity transitioning from pediatric to adult care AWEs experience the transition from pediatric to adult care as hard due to a lack of familiarity with healthcare professionals in adult care and the shift in responsibilities.Furthermore, AWEs express diverse perspectives on the anticipated loss of parental involvement.

Feeling ill-prepared for the transition
AWEs express that they are ill-prepared for the transition and the sudden exclusion of parents.

Synthesized finding #3 1. The importance of support from the family in mastering living with epilepsy
The family's support influences AWEs to master and control epilepsy.The willingness to compromise allows parents and AWEs to manage their worries.

Handling restrictions placed by parents
Restrictions and limitations imposed by parents to participate in daily life activities are a significant distress point for many AWEs, and in some instances, they give up on social activities.Some AWEs express anger over such parental control that implies a loss of autonomy and privacy.Synthesized finding #4 1. Seeking and sharing knowledge of epilepsy AWEs use the internet to seek knowledge and find this medium easier than face-to-face contact, but it can be hard to understand.

Conscious of how health professionals give information
When AWEs experience medical jargon, they are prevented from getting knowledge of their illness.On the other hand, accurate information gives AWEs peace of mind.

Synthesized finding #5 1. Reasons for engaging or disengaging with healthcare services
Age-inappropriate communication can inhibit AWEs engagement in consultations; they need to feel valued and acknowledged.The younger age band can feel inferior to the doctor and the parents in discussions.Over time, AWEs develop the confidence to participate in discussions concerning their epilepsy.

Making room for the young person in appointments at the hospital
AWEs perceive parents and HCPs as reducing their interaction and contribution to appointments because they dominate appointments.AWEs wish to be more involved in the appointments.

Parents and healthcare professionals' roles in consultations
The possibility of having a parent present in the consultation is experienced by AWEs as valuable to provide safeness but, in contrast, can also be experienced as a limitation for conversation if the HCPs are not aware of listening and involving AWEs and only talks to the parent.AWEs experience the possibility of having a parent present in the consultation as valuable to provide safety but, in contrast, can also be experienced as a limitation for conversation if the HCPs are unaware of listening and involving AWEs and only talk to the parents [45,53,63].

Discussion
In a transition theory perspective [64,65], the meta-synthesis reveals that the transition experience of AWE is more than a change from one clinic to another and is interwoven into a pattern of developmental, health-illness, situational, and organizational transition issues.
The first synthesized finding underscores the broad-reaching effects of epilepsy on many facets of AWE's lives, encompassing physical and mental well-being, social interactions, and academic accomplishments.Specifically, AWEs feel physically and socially differently and strive to live a normal life like their healthy peers.The second synthesized finding illuminates the troublesome intersection of transition because AWEs have concerns about transitioning and assuming responsibility for their life and illnesses without parental collaboration.The third synthesized finding demonstrates the importance of a delicate balance between support and overprotectiveness from the family.The fourth synthesized finding illustrates that insufficient communication and medical jargon can prevent AWEs from obtaining knowledge about their disease and its treatment.Notably, the fifth synthesized finding emphasizes the importance of developing an environment of understanding, acceptance, and inclusivity through involvement to support AWEs in navigating the transition to adult care.
In the following, we will address issues related to AWE's experiences with epilepsy, needs for support, and transition dynamics (during consultations) between AWEs, parents, and HCPs.
The consciousness of feeling physically and socially different found in this study is also seen by Harden et al., who describe that peer acceptance and social connectivity are important issues for all adolescents, and those with epilepsy are no different [30].Normalization may involve maintaining a normal lifestyle by attempting to maintain previous everyday routines in the face of change brought on by their illness or by keeping pace with peers, which aligns with other studies [7,30,33].The wish to keep up a normal lifestyle is a well-known issue in other adolescents with chronic illnesses who also experience a loss of normality and control over their bodies due to lifestyle restraints and changes connected to living with chronic disease [66][67][68][69][70].However, what may be unique in epilepsy is that adolescents are conscious about the visibility of their condition, mainly because of seizures, and feel they suffer consequent discrimination [66,[71][72][73].
The meta-synthesis reveals that dynamics among AWEs, parents, and HCPs are essential in transitioning into adult care.The interdependent dynamic among AWEs, parents, and the pediatrician they have become familiar with during years of healthcare is one of the most common barriers to the transition [19].Van Staa et al. describe adolescents' experience of increased responsibility for their disease management as challenging and describe this phase as confusing and frightening and a demanding and complex manoeuvre [74].Lack of preparedness makes the AWE feel redundant and unwanted, and this review reveals a need for improved preparation and continuity, similar to other findings [29].Fegran et al. [19] found in their review that young people with chronic diseases experience a loss of familiar surroundings and relationships, combined with insecurity and feeling unprepared for what is ahead.Furthermore, the transition can be a time of discord because of parental reluctance to let go of their responsibility and allow the AWEs to take over [75,76], which supports the findings in this meta-synthesis.
Our review reveals the importance of understanding and support provided by the AWE's parents, which aligns with other research [29,30].Chong et al. [29] underscore that it helps to reinforce coping strategies to adapt, master, and control their epilepsy.This aligns with a recent study that finds that parental support is AWE's most crucial factor in health-related QOL [77].Several studies identify factors and ways (e. g., access to medical support, the quality of medical support, and support from close friends, family, and others) that moderate or reduce the impact of epilepsy for adolescents [7,73,[78][79][80][81][82].However, relational and parenting problems or social isolation are more common among families of an AWE compared to other chronic illnesses [83][84][85].As AWE grows older, they rely in various amounts on their parents to develop their independence [31,86].AWE might occasionally voluntarily place limitations upon themselves to safeguard their well-being.By contrast, Asato et al. (2009) describe that by reducing authority and restrictions on AWEs, parents can protect their children from stigma and consequential psychosocial problems [87].Our findings elaborate on those of Kerr et al. (2011), who have emphasized the significance of social support from various sources, including family, friends, and HCPs, as a helpful mechanism for coping and a crucial factor in the perception of resilience when dealing with chronic illness [7].
In accordance with previous studies [66,88], this review finds that AWEs are comforted and feel more at ease when communicating with HCPs who avoid the use of medical jargon and share relevant and detailed knowledge about their condition.It can improve AWE's confidence in managing their disease, coping with stigma, and living independently [30,31].According to Patterson & Cam [89], AWEs want to see HCPs who will listen to them and involve them in consultations.Further, AWEs appreciate HCPs who provide emotional support by actively addressing social aspects of their disease, including stigma and depression, and sharing the experiences of other adolescents with chronic disease [29,90].Similar to the current meta-synthesis, AWEs feel empowered to suggest topics that are overlooked at home and to participate in self-management actively.On the other hand, AWEs withdraw from HCPs when they perceive a lack of age-appropriate information, absence of direct communication, and a sense of being ignored.Research shows that having inadequate knowledge about epilepsy is linked to higher rates of depression, lower levels of self-esteem, and increased social anxiety [91].Based on the present findings, the significance of epilepsy knowledge seems to be critical for psychosocial adjustment.
Research shows that when HCPs facilitate discussion at their level, AWEs have the confidence to express themselves [91], consistent with our study's findings.Hence, HCPs must possess knowledge of AWE's developmental stages and be responsive to their requirements.However, it is difficult as the consultations often adhere to a standardized procedure focusing on acquiring data that is primarily relevant to HCPs.According to Lewis et al. [31], the information required by AWE is multifaceted and differs based on their age.Issues and concerns that appear pertinent and significant to them at various developmental phases also change over time.Excluding AWEs from conversations regarding their needs can hinder their progression toward independence.Our findings underscore the significance of fostering an environment characterized by understanding, acceptance, and inclusivity to aid in support of AWEs.These findings are consistent with other studies regarding diverse pediatric chronic illnesses, displaying that AWEs appreciate being involved in decision-making and influencing the situation [89,[92][93][94][95]. Hence, there is a need for further research into the dynamic of consultations in empowering AWEs to be seen as individuals with unique personalities, capabilities, and needs.
Since transition is a gradual process, transferring an adolescent from pediatric to adult care can take many years instead of a one-time handing over.Goselink et al. [96] point to AWE's distinct difficulties with transitional care from pediatric to adult healthcare and suggest that a planned transition process likely enhances medical and psychosocial outcomes.HCPs should empower AWEs to express their desires freely and needs with confidence and self-assurance, addressing their psychosocial and practical needs.This approach aligns with existing studies on chronic diseases, including cancer [97], cystic fibrosis [98], and congenital heart disease [99].

Strengths and limitations
This review provides the first comprehensive overview of AWE's experiences and needs in a meta-analysis between the ages of 12 and 22 years transitioning from pediatric to adult hospital care.A strength of this study was the employment of a transparent, rigorous, and systematic procedure for a systematic review using the PRISMA guidelines [41].The studies included were selected and critically assessed according to JBI-QARI [38].Secondly, at least two authors performed study screening, selection, and meta-analysis with the first author, leading to a more rigorous assessment of the findings.The study is strengthened by the detailed visualization of the meta-aggregation process structured in Fig. 2. A strength of this meta-synthesis is that we conducted a comprehensive search strategy of six databases, which limits the risk of missing published studies in the target field.The extensive search approach yields a high number of studies to be collated for screening, and it ensures the search is broad enough to include essentially all relevant published studies.
The study group may not be representative of the entire epilepsy population, as a low number of participants had cognitive and psychiatric disorders, which may limit its generalizability to these two groups.Further, the prevalence of females in the study was higher than males.The decision not to exclude studies with limited discussion on the philosophical underpinnings of analytical methods and the potential influence of researchers on the original studies could introduce analytical bias.It may warrant further investigation in future research.However, the fact that data are relatively equally distributed across the synthesis' strengthens the validity of the findings regardless of the methodological quality.Adolescents in the included 21 studies were mainly Caucasian from Western countries.This may impact generalisability, considering that interventions related to epilepsy management may differ in other countries.

Recommendations for clinical practice and research
HCPs can facilitate the transition period (age 12-22 years) by assessing needs, preparedness, resources, relationships, and responsibilities as part of individual transfer plans.Such actions would facilitate the adolescent's experience of feeling important and as valuable contributors to their healthcare.Treatment and supervision should address the psychosocial needs of AWE regarding present lifestyle limitations, stigma, future concerns, and disclosure.As the transition process occurs over an extended period, the transfer of AWE from pediatric to adult care may necessitate several years rather than a one-time transfer.Therefore, HCPs must be equipped to identify issues as they emerge and intervene early through involvement and support with effective and meaningful individually tailored interventions.
In light of our findings, work is required at the environment's social level through a partnership between HCPs, schools, epilepsy support organizations, and families to increase awareness and knowledge about epilepsy and reduce the associated stigma.The AWE and the HCPs should be ready to invest the necessary time and support to prepare adolescents to take responsibility for their situation and health.We advocate for creating an environment characterized by understanding, acceptance, and inclusivity where AWE can thrive beyond the limitations of their illness.This environment can support AWEs in facilitating the development of responsibility, independence, and confidence as they navigate the transition to adult care.
The knowledge gap in examining AWEs' transition experiences emphasizes the urgency for research on this topic, particularly for AWEs who face additional challenges such as intellectual disability, ADHD, and other neurodevelopmental challenges.Utilizing inclusive recruitment strategies and adaptive data collection protocols, such as plain language, visual aids, and assistive technologies, can better accommodate these populations' specific needs and communication styles, thereby enhancing participation and data quality.Further, longitudinal studies with repeated assessments of AWE transition experiences are needed to inform future healthcare and interventions.These studies will provide valuable insights into AWEs' perspectives on coping with their needs and the role of social support during the transition to adulthood.New research on this topic could enhance our understanding of the difficulties faced by this population, identify gaps in existing support systems, and inform interventions to best support the transition to adultbased services.

Conclusion
The findings of this meta-synthesis support previous research, indicating that transitioning from pediatric to adult care is a problematic intersection point with high complexity.AWEs experience a loss of familiarity, increased responsibility for managing their disease, loss of familiar support, and a lack of preparedness.Moreover, AWEs emphasize the importance of being heard and involved in consultations and decision-making.Highlighting the AWE's experiences and needs during transition can expand our understanding of how HCPs engage and support them during the complex transition.
Our synthesized findings provide new insights into the experiences and needs of AWEs, emphasizing the importance of supporting them during the transition with an environment marked by understanding, acceptance, and inclusivity, fostering their growth beyond the constraints of their condition.By making the experiences and needs of AWEs more evident, our findings describe the importance of acknowledging and supporting AWEs in the transition process through involvement and the development of responsibility and independence in managing their epilepsy.

Declaration of competing interest
The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

22 Fig. 1 .
Fig. 1.Search results and study selection and inclusion process in PRISMA FLOWCHART.

O
. Abildgaard Hansen et al. 1:1.4.None of the studies defined the severity of intellectual or behavioral disability of the participants.

Table 1
Critical appraisal of included qualitative studies (n = 21).

Table 2
Characteristics of included studies.

Table 2
(continued ) (continued on next page) O. Abildgaard Hansen et al.

Table 2
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Table 2
(continued ) [56]49,51,54,56]I'd be like, just forget about it."[44](p.88).1.3.The unpredictability of seizures and side effects from medication -The cause of fear and distress in everyday life.Epilepsy gives rise to a lack of control due to the unpredictability of seizures and causes fear and distress in everyday life.Furthermore, AWEs experience side effects from the medication, such as tiredness, sleeping disorder, concentration difficulties, and memory impairment[48,49,51,54,56].one,soI'vebeenokay.Well I've had one in the bath before, when I was on my own, but I have to leave the lock undone, just in case, and luckily my boyfriend heard me he knew something was wrong he come in and got me, so that was okay[laughs]."[56](p.218)

Table 2
(continued ) [53] wanted to listen to what I said (healthcare professional), how I felt, it was very good…I was able to ask questions and get answers to them, was able to bring my mum because I felt she needed to be there so she can understand exactly what needed to be known as well."[53](p. 18)