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Abstract

This study describes the development and design of the Joint Transition Clinic, a collaborative solution designed to support adolescents with epilepsy (AWE) in their transition from pediatric to adult healthcare. Using a participatory design (PD) approach, the study involved AWEs, parents, nurses, and physicians in an iterative development and co-design process. Through a series of workshops, users suggested three ideas: “The Bridge,” “The Knowledge Giraffe,” and “No rules app.” After considering all three ideas, the research team and participants agreed to proceed with the development of “The Bridge,” integrating elements from “The Knowledge Giraffe.” This process led to the creation of the Joint Transition Clinic, encompassing many of the AWEs’ needs and wishes. The PD approach proved effective in creating an organizational-based intervention that addresses patient needs and supports self-management while ensuring AWEs and their parents had a voice in its development, leading to a solution ready for pilot testing.

Keywords

adolescence epilepsy participatory design patient perspectives transition

Background

The transition of adolescents with epilepsy from pediatric to adult healthcare is more than a relocation; it is a complex transition due to co-occurring neurological, neurodevelopmental, and psychiatric comorbidities experienced by AWEs.¹ Furthermore, it encompasses challenges such as vulnerability in physical and mental health, social relations, and educational achievement^2–5 as epilepsy also impacts mental well-being, social inclusion, quality of life, and care beyond physical symptoms.^5–9 As is the case for adolescents with other chronic illnesses, research highlights the crucial role of close collaboration between adolescents and healthcare professionals (HCPs) from various disciplines in facilitating a successful transition from pediatric to adult healthcare.^10–13 Chu et al. (2015)¹⁴ describe that supporting adolescents’ arrival in adult care was as important as preparing them for the transfer. Others have emphasized the importance of acknowledging the need to properly prepare for the transition and the adolescent’s needs upon arrival in the new care culture.¹⁵ A seamless transition from pediatric to adult healthcare is essential for the long-term health and well-being of AWEs. However, evidence shows that this transition tends to perform poorly due to inadequate preparation, poor service coordination, a lack of resources, and insufficient education and training.^16,17 If the arrival is neglected, HCPs share concerns that the adolescents might feel displaced among the elderly patients in the new environment,¹⁸ or they might disregard checkups with fatal consequences for their health.¹⁹ AWEs lack adequate coping strategies to address specific transitional problems during the development of autonomy and independence.²⁰ From a transition theory perspective, greater self-identity and growing independence characterize the transition.^21,22 This experience is interwoven with developmental, health-illness, organizational, and situational transition issues, emphasizing that transitioning from pediatric to adult healthcare coincides with other significant life-course transitions and needs. Meeting these needs requires changes in clinical practice; however, involving the practice’s stakeholders is essential to finding new ways to meet their needs.²³

A recent study revealed that AWEs seek independence, acceptance, and understanding in managing their epilepsy and transitioning to adult care.²⁴ However, research indicates that most HCPs primarily focus on epilepsy diagnoses, treatment, and side effects when transitioning adolescents from pediatric to adult healthcare.²⁵ Further, transition issues like psychosocial and developmental issues receive limited attention, such as finishing education and finding a suitable job, achieving independence and separation from parents, and building a social network. Additionally, AWEs experience a gap associated with the inflexible standardized transition to adult care, mainly consisting of a transfer in a referral letter instead of an organized and gradual transition process.²⁴ This is despite research establishing that transition and transitional care are recognized as critical components of care, emphasizing continuity, coordination, medication management, symptom recognition, self-management, complete communication of information, patient education, outpatient follow-up, and tailored care based on individual patient needs.^26–28 How AWEs perceive and are involved in the process will likely influence a successful transition. Discussion and understanding of AWEs’ views and preferences about transition could help HCPs and AWEs develop personalized planning for transition as a whole. There is potential to optimize the transition of AWE from pediatric to adult healthcare and to involve the primary stakeholders in finding new ways to organize and deliver healthcare. In this study, we aim to describe the collaborative development and design of the Joint Transition Clinic in clinical practice. We emphasize the co-design process, involving AWEs, their parents, and HCPs through a participatory design approach. The results of an evaluation of the developed solution will be presented in a separate article.

Material and methods

Study design

A participatory design approach guided the development of the transition solution.^23,29,30 PD evolved from action research introduced by Kurt Lewin in the 1940s,^23,31 which focused on collaboration between researchers and participants to solve practical problems, aiming not only to study practice but also to change it,^32,33 allowing stakeholders to define problems, identify causes, and develop solutions. The goal is to describe users’ knowledge to design solutions that empower them,³¹ fostering mutual understanding among stakeholders and enhancing their ability to manage different situations collaboratively. Users and designers engage in continuous mutual learning, with users providing essential insights into their needs and practices.²³ The cornerstone of PD is collaboration, transitioning users from passive data providers to active co-researchers with a voice in the process.²³ We endeavored to give the AWEs a voice at a time when they may have felt excluded. Their perspectives and experiences were essential in developing the intervention. Stakeholder contributions informed each step, ensuring that findings from one stage shaped the next. Through mutual learning, key stakeholders co-created and refined the intervention, resulting in a solution that was developed and endorsed by all participants.^23,29,34

This project involved a three-step iterative process: (1) identification of needs, (2) design and development, and (3) pilot test and evaluation.²⁹ Figure 1 illustrates these phases. The study employed iterative processes for all phases. Phase 1, which describes users’ needs, was reported in two prior studies: a systematic review and meta-synthesis³⁵ and a qualitative exploratory study with field observations and stakeholder interviews.²⁴ This article reports on Phase 2, during which an organizational intervention was co-created through workshops utilizing creative tools and techniques.³⁶

Figure 1.

The three phases in participatory design.

Setting

The study was conducted in an outpatient clinic at a University Hospital, a secondary epilepsy center in Denmark, where adolescents’ routine epilepsy clinic appointments and regular follow-ups were completed as part of the patient pathway. In Denmark, young people with epilepsy are managed at the children’s ward until they reach 18 years of age. Pediatric clinical management involves outpatient treatment, with follow-ups by a doctor and nurse every six months. Adult neurology has one formal scheduled consultation within 6–12 months, followed by predominantly “on-demand” appointments.³⁷ Each year, around 18–20 AWEs are transferred to adult healthcare. The transition occurs by referring AWEs to the adult department following assessment by a senior neurologist.

Participants

Fifteen AWEs from Phase 1 expressed interest in participating in the workshops and provided consent for further contact. Of these, six responded and agreed to participate, along with six parents. However, only two AWEs and three parents attended Workshop 2. Attempts to recruit additional AWEs were unsuccessful. The inclusion criteria encompassed adolescents aged 12 to 22 who speak and understand Danish, have onset of epilepsy in childhood or adolescence, and have relatively normal cognition, as indicated by their ability to attend Danish primary school. In total, six adolescents, six parents, five nurses, two neurologists, one pediatrician, two senior researchers, one master’s student, and one PhD student participated in the workshops. An overview is presented in Table 1. The first author (OAH) collaborated with epilepsy nurse specialists to recruit participants from September 2021 to March 2022. OAH gave participants verbal and written information about the study and asked them to participate in workshops. Participants gave informed consent, allowing OAH to contact them about the workshop. For adolescents under 18 years old, parents and adolescents had to give informed consent.

Table 1.

Overview of participants’ characteristics and participation in workshops and pilot test.

Participants	Age	Sex	Workshop 1	Workshop 2	Workshop 3–7	Intervention pilot test	Interviews post-intervention
AWE 1	19	Male	X
AWE 2	15	Male	X
AWE 3	19	Female	X	X
AWE 4	20	Female	X	X
AWE 5	19	Female	X
AWE 6	16	Male	X
AWE 7	19	Male				X	X
AWE 8	19	Female				X	X
AWE 9	19	Female				X	X
AWE 10	19	Female				X	X
AWE 11	19	Male				X	X
AWE 12	18	Male				X	X
AWE 13	20	Male				X	X
AWE 14	19	Female				X	X
AWE 15	19	Male				X	X
Parent 1	52	Female	X	X
Parent 2	52	Female	X
Parent 3	51	Female	X
Parent 4	47	Female	X	X
Parent 5	49	Female	X	X
Parent 6	56	Male	X
Nurse 1, PD	—	Female		X
Nurse 2, PD	—	Female	X	X	X	X
Nurse 3, ND	—	Female	X	X
Nurse 4, ND	—	Female	X		X	X
Nurse 5, ND	—	Female	X	X
Nurse 6, ND	—	Female			X	X
Physician 1, ND	—	Male	X	X
Physician 2, ND	—	Female	X
Physician 3, PD	—	Female	X	X
Masters student	—	Female	X	X
Researcher 1	—	Female	X	X
Researcher 2	—	Female	X	X
PhD student	—	Male	X	X

PD, pediatric department; ND, neurology department.

The reflective and iterative process during the stages of workshops

Inspired by the PD approach, we applied the iterative cycles of planning, acting, observing, and reflecting, following the methodology of iterative processes in analyzing the data material.³⁸ Each cycle was built upon the previous one, enabling researchers to refine their methods, enhance their understanding, and adapt interventions based on observed outcomes and reflections. This led to continuous improvement and deeper insights. This ongoing stepwise integration of analysis, design, and development facilitated the planning of the next workshop based on the results and experiences of the just-completed workshop. Member checking was conducted in every workshop to verify the findings, enhance data analysis accuracy, and provide transparency and trustworthiness.³⁹ Furthermore, we employed various activities to design and develop a solution, as illustrated in Figure 2.

Figure 2.

Phases 2 and 3 activities summarized. The iterative nature of participatory design involves repeated cycles of plan-act-observation-reflect iterations throughout all phases. Each cycle builds on the previous one, allowing continuous feedback loops, improvement, and deeper insights.

Workshops

Workshops were conducted from April 2023 to April 2024. These workshops were held on the University Hospital. Originally, workshops were derived from creative methods of solving problems group-wise, such as “brainstorming”⁴⁰ and reflecting and learning about a predetermined issue to be addressed.⁴¹ As a research method, workshops aim to generate data regarding future design processes and organizational changes.⁴⁰ Each workshop had a script with a precise aim and activities. The scripts included the workshop’s aim and a description of all user activities following a rhythm of opening, working, and summarizing. The first author illustrated script parts, such as the day’s agenda and participant’s assignments. The first author created visual illustrations for each workshop that summarized the results of the previous workshop (Picture 1). The workshops were planned and facilitated by the first and last authors and included approaches from future workshops.⁴² Each workshop was planned one activity at a time due to the uncertainty of how many iterations would be needed to develop a final solution. Workshops 1 and 2 had working stations facilitated by a researcher who initiated the discussions and participated in the emerging mutual learning process in the groups. All workshops were audio-recorded and documented through field notes, posters, post-its, and photos by the moderator, facilitators, and observer. Throughout the process, the facilitators compiled summaries of the groups’ work.

Picture 1.

Illustrations from the workshops summarizing results.

Workshop 1: Generating ideas toward a solution concept

Workshop one was arranged as a 2-h session aiming to generate innovative strategies and new ideas for enhancing the transition process, ensuring improved consideration of the needs and wishes of AWEs and their parents. The findings from Phase 1 of the PD project^24,35 (Figure 3), informed the initial workshop’s critique and fantasy stages processes. The workshop commenced with visual illustrations of the PD project’s findings derived from Phase 1. During Workshop 1, the participants were encouraged to keep an open mind and embrace a “the sky is the limit!” mindset.

Figure 3.

Needs and preferences emerging from Phase 1.

Workshop 2: Refining and actualizing ideas and solutions

Workshop 2 was arranged as 2-h sessions, aiming to refine and actualize concepts and solutions from the fantasy stage in Workshop 1 and work towards their realization in the transition, ensuring that the needs and wishes of AWEs and their parents are better addressed. The participants were asked to generate ideas limited to those informing a solution concept based on the ideas that received the most votes at the end of Workshop 1.

Workshop 3–7: “Laboratory test” - developing the joint transition clinic with HCPs

Laboratory testing should be viewed as a step in the ongoing development process⁴³ and as part of a learning process.⁴⁴ Workshops 3–7 were arranged as four-hour sessions to develop the organization of the new patient pathway related to the Joint Transition Clinic. The patient perspectives were represented by data from the ethnographic investigations and workshops 1 and 2. The participants brainstormed, shared, and reflected on different points of view and experiences to best meet the users’ needs, as facilitated by the first author. Pictures, posters, and headings on paper, along with participant comments, were used to illustrate and discuss how the solution could support the workflow as the new patient pathway was reviewed step by step. In this study, laboratory testing of the solution in a clinical setting was planned to support its implementation in a real-world context.

Ethics

The Scientific Ethics Committee granted an exemption from full assessment under Danish law, citing minimal risk, low-risk topics, no sensitive data, and the project’s classification as quality development. The study was additionally submitted to the Danish Data Protection Agency (No. 20202000-229), and it was included in Region Southern Denmark’s register of research projects (No. 21/38124). Participants and HCPs were provided written and verbal information about the study, in compliance with relevant ethical standards.⁴⁵

Results

Seven workshops were conducted. Data from each workshop consisting of audio files, photographs, illustrations, and notes written by the participants were collected. The photographs, graphics, and notes were categorized by topic. After each workshop, OAH performed the initial analysis and verified with the research team. Reflectivity in the data analysis was facilitated by the research team’s discussion of their reflections. Below, parts of the content from across the complete dataset are presented, complemented with illustrative pictures.

Participant characteristics

Table 1 shows the characteristics of the participants and their participation. The average age of the AWE participants in the workshops was 18 years.

Workshop 1: Generating ideas to inform a solution

The initial workshop explored the findings from Phase 1,^24,35 (Figure 3), to support the idea of the iterative process of PD. Two groups elaborated on ideas and topics relevant to the final solution. The critique stage identifies frustrations stemming from people’s lived experiences, releasing energy for creative thinking in the fantasy stage, where participants explore utopian ideas for potential solutions. Suspending reality in this stage fosters creative and imaginative thinking by allowing participants to express their hopes and dreams. In the fantasy stage, the participants were asked to build a model using creativity in any way they imagined. At the end of Workshop 1, participants presented three of their numerous ideas in plenary: (1) “The Bridge,” (2) “The Knowledge Giraffe,” and (3) “No Rules App” (Figure 4). The three ideas are presented in Table 2. In collaboration with the participants and based on a vote for the essential areas to continue with, the three creative ideas were chosen to be refined and actualized in Workshop 2: the implementation stage.

Figure 4.

The three creative ideas to work with in Workshop 2 (the Implementation Phase). The image at the top right contains the following Danish text: “No rules; receive a message about what you can and can't do; if you could call the HCP with questions; possibly a personal physician.”

Table 2.

Content of the three creative ideas from Workshop 1, highlighted content incorporated in the final solution.

“The Bridge”	“The Knowledge Giraffe”	“No Rules App”
Move towards one another and bring over the bridge	A knowledge giraffe can represent both the young person and the parents, but it is inquisitive. It needs to get information and knowledge about epilepsy	Super bright app with accessible knowledge
Go over and visit with open arms. A nurse comes over and greets them	Greater availability of knowledge/HCPs for all the questions and everything you were not told, did not get to tell and did not understand when you got home and got to talk. What you have come to think of because it is difficult to contain all that information	Get answers to your questions via the app
The individual person must be considered when transitioning from the children’s to the adult ward	Meeting HCPs who capture what worries, fills one’s mind, or thoughts one carries around	An app that can be customized to suit the individual
Room for diversity in patient the pathway - one way for sofie and another for david	To have a safety net that catches the young person	Easy contact with HCPs
Bridge building where children and adults walk hand in hand	The individual treasure map – what is important to me? Establish fixed agreements in the patient pathway concerning what is essential for the young person and the family in relation to epilepsy	A unified system for the individual and HCPs that consolidates all relevant information
Transition meeting/joint consultation where the children’s and adult departments are both present	A flexible solution based on the prerequisites and needs	Simple for families and AWEs to manage everything and also convenient for HCPs to track
Joint nurse transition ambulatory	Relieve concerns and questions with an app that acts as a help function and supplement, where you can find some answers after the consultation	Video clips where young people share what it's like to live with epilepsy
Community of 1-2 consultations in the children’s or adult departments	To develop knowledge/video, etc., to the app so that every need does not have to be thought of in a consultation	A phone, video, or SMS line integrated with the (health) system allows users to call, talk, get answers, or write
Young people must be happy about the transition, just like when they go from kindergarten to school—they experience becoming a bit of an adult, which is a positive experience	A vote of expectations via an app or a form so everyone has something to prepare by – think about what you want to discuss
Teach the parents to let go along the way	The magic wand symbolizes the hope that epilepsy and its later consequences can be overcome with a spell

Workshop 2: Refining and actualizing ideas and solutions

In the implementation stage, participants apply pragmatic thinking to their visionary, utopian ideas, exploring and planning how to transform them into achievable changes, either fully or partially. Hence, we aimed to clarify our direction, convey a good impression of the content in a prototype, and provide an initial version of a potential solution or intervention. Three groups discussed and elaborated on the ideas “The Bridge,” “The Knowledge Giraffe,” and “No Rules App” (Figure 4 and Table 2). Significant discussions took place during the idea development stage, with one group’s concept, “The Bridge,” serving as the starting point for the final solution. As one from the group elaborated on the drawing (Picture 2).

“It could be bridge-building (transition between pediatric and adult healthcare) where children and adults walk hand in hand. It could be the Great Belt Bridge, which also has a tunnel. Come over and pick the patient up, or come over and visit with open arms. A doctor and perhaps the young person’s parents are in the back of the drawing, running for something that is needed, letting go, standing, waiting, and waving. There are many different roads and bridges to choose from here. Epilepsy is so many different things; you can’t just say this is the best way. What we need is something completely different that others need.” (Mother to AWE)

Picture 2.

“The Bridge” - Illustration of the main idea for further development. The image features two Danish words: Barn (meaning ‘child’) and Voksen (meaning ‘adult’).

“The Bridge” reflects on and incorporates many of the suggestions from “The Knowledge Giraffe,” focusing on how we connect, communicate, and collaborate between pediatric and adult healthcare via “The Bridge.” This is a conceptual bridge and restructured organization for AWEs, where HCPs assist the transition. All three solutions were considered, and given that “The Bridge” could address most needs, the research team and participants agreed to proceed with its development, incorporating aspects of “The Knowledge Giraffe,” Thus, the Joint Transition Clinic concept was proposed, integrating many of the aspirations and ideas from Workshops 1 and 2. The Joint Transition Clinic unites families and nurses from pediatric and adult departments.

Workshop 3–7: “Laboratory test” - developing the joint transition clinic with HCPs

Based on the experiences and findings from the first two workshops, we developed a new concept for the patient transition process: the Joint Transition Clinic. The previous workshops highlighted the need for improved collaboration between the pediatric and adult departments to enhance knowledge sharing, align expectations, and better meet the needs of AWEs earlier. Three nurses, along with the first author, developed the organization of the new patient pathway and workflow related to the intervention. At workshops 3–7, features and their possible content in the Joint Transition Clinic were discussed based on the findings from the first two workshops. The features, including the joint agenda and the person-centered conversation tool “Inspiration list - what can you talk to a nurse about?” (Figure 5), were designed to support the need for information and communication, providing an opportunity to involve the AWE on their terms. The features guided the consultation on expectations, security, independence, and getting to know the young person. The new patient pathway is centered around the patient, aiming to ensure consistency, meet expectations, and provide security and satisfaction. It offers transitional consultations with active user participation, addressing individual needs, aligning expectations, ensuring security, and maintaining continuity. This patient-centric approach is the key to the proposed improvements. The new patient pathway was suitable for clinical practice, as it was developed by those who would use it (Figure 6). Table 3 provides an overview of the features of the joint transition clinic that have been developed, along with their potential impact on identified needs.

Figure 5.

Inspiration list - what can you talk to a nurse about?.

Figure 6.

Schematic representation of the existing and new patient pathways.

Table 3.

The features of the Joint Transition Clinic and its impact on identified needs and wishes.

AWE experiences and needs in the transition process	Features in the Joint Transition Clinic	Potential impact
Navigating epilepsy in everyday life Coping with the daily life restrictions and consequences of epilepsy on the way to adulthood - a matter of addressing the impact on everyday life During consultations and transition, AWEs need to be involved, seen, heard, and understood as individuals rather than as illnesses Communicating age-appropriate and without medical jargon and making room for the adolescent in appointments at the hospital Development of independence and responsibility through involvement and support from HCPs and parents in consultations Seeking knowledge and being familiar with epilepsy The significance of continuity transitioning from pediatric to adult care as AWEs and families feel ill-prepared. The transition from the pediatric to the adult ward is described as a free fall, with the period between the last pediatric consultation and the first adult consultation feeling like a void, marked by a lack of security. Navigating the upcoming transition - Vote of expectations	Person-centered conversation toolA visual representation of different subjects to inspire communication about:- Epilepsy and treatment- Alcohol and Drugs- Strengths- Sleep and fatigue- Dating, relations, and Sexuality- Education, employment and future- Safety and Security- Feelings and thoughts- Friends and free timeJoint consultation – pediatric & adult nursesJoint pick up of the AWE in the pediatric clinic with a tour around the department. Both nurses come over and greet them. Hello to adult nurses, and goodbye to pediatric nursesJoint agenda- Joint care planWelcome letterInformation to prepare the patients before meeting the nurses or as a recap after the consultation	Support for patientsTo provide a presentation for conversation with the young person (and the parents) about illness and self-care to feel safe and have a safety net that catches the AWE. The young person will meet nurses who capture what worries, fills one’s mind, or thoughts one carries aroundTo provide patients with knowledge about epilepsy and facilitate self-management and involvement in treatment and careTo provide patients with close contact with the hospital and make them feel safe and welcomeTo support bridge building and what is important to AWEs, where children and adults walk hand in hand, establish fixed agreements in the patient pathway concerning what is essential for the AWE and the familyTo support a vote of expectations as preparation for differences and alignment of expectations

Discussion

A Joint Transition Clinic and a structured follow-up workflow were developed to address a previously identified gap in clinical practice, meeting the needs of adolescents with epilepsy as they transition from pediatric to adult healthcare. This initiative was undertaken in close collaboration with patients, their families, healthcare professionals, and researchers through a participatory design process. User involvement is the core of PD and was essential to our study. Kanstrup et al.⁴⁶ emphasize the significance of user involvement, finding that, as key actors, patients can provide original designs that combine everyday living with medical solutions in a way that designers could not have achieved by themselves. This was similar to our study. Furthermore, PD provided AWEs and HCPs with a democratic say in the final product and facilitated mutual learning for all involved. The “Joint Transition Clinic” was designed to facilitate a more patient-centered approach, adaptable to clinical practice, that accommodates AWE’s requests to be seen as individuals, not illnesses.

Adding an extra transition consultation in the Joint Transition Clinic (Figure 6) may have significant cost-effectiveness implications. However, economic analyses of various transition-related programs emphasize that the upfront costs associated with implementing these programs are outweighed by long-term benefits.⁴⁷ Structured transition interventions are likely to be cost-effective, leading to improved health outcomes and reduced costs associated with emergency visits and hospital admissions.^48,49 However, future research should explore the economic challenges and benefits, as these factors are crucial for decision-makers when considering implementation and ongoing operations.

Although transition clinics for epilepsy have been developed around the world and are viewed as essential to the effective transfer of care, the implementation remains highly variable.⁵⁰ Research shows that most practical models for organizing transition care, e.g., transition clinics, educational programs, skills training, transition coordinators, and enhanced follow-up,^51–54 have been developed and evaluated, focusing on the effectiveness of health outcomes and the process of passing along appropriate medical information but to a lesser extent tailored to individual needs.^55–57 Transition clinics are available for several chronic conditions such as diabetes,⁵⁸ heart disease,⁵⁹ or juvenile idiopathic arthritis.⁵⁶ The challenges faced by AWEs are similarly identified in this study, including the need for holistic approaches that address both medical and psychosocial aspects of care. However, transition clinics tailored to AWEs’ needs, co-created by them, are lacking. Thus, the co-production of this study provided a unique opportunity to explore, learn, and understand the practice as experienced by users, collaboratively searching for new ways to ensure a smooth transition by involving AWEs, parents, nurses, and physicians. User involvement is central to participatory design and has been crucial to our study. The participants experienced valuable mutual learning throughout the development process. Recognizing that not all needs can be met in collaborative studies, the design process continuously focused on bridging communication between AWEs, parents, and HCPs, supported by an iterative PD approach in a search for the best possible joint solution.²⁹

In a previous study, we identified that AWEs seek understanding, acceptance, and autonomy in managing their epilepsy and transitioning to adult care.²⁴ Their experiences highlight the importance of holistic support and effective communication in healthcare settings. Fostering the recognition of AWEs as individuals with distinct personalities, needs, and capabilities requires a concerted effort from HCPs. The person-centered conversation tool: “Inspiration list - what can you talk to a nurse about?” was designed to support the need for information/communication and provide an opportunity to involve the AWE on their own terms.

Conducting a PD study requires considerable commitment and effort. Involving users consumed a lot of time, both for the participants and the research team. It was difficult to recruit young patients undergoing treatment for a chronic condition, the challenges of living with epilepsy, and busy HCPs. However, the input from users provided valuable knowledge and was crucial for refining the features of the Joint Transition Clinic and the new patient pathway for clinical practice. In addition, involving users from the clinical practice where the Joint Transition Clinic will be based was important. User involvement in the PD process significantly changed participants’ mindsets. The research team and HCPs learned about patients’ resources and motivation to engage in their treatment and care, while patients gained insight into the HCPs’ professional considerations. The research team relied on HCPs to understand clinical practice. The diverse contributions from all participants were crucial in developing a functional solution that met users’ needs and had a potentially significant impact on them.

Strengths and limitations

A strength of this study was the development of an evidence-based and patient-focused practical solution that spanned multiple departments and disciplines. The development process was iterative, incorporating reflexivity and researcher triangulation.⁶⁰ Our study demonstrated how to successfully involve the users in co-designing and developing a solution in the patient pathway.

Limitations include the fact that this single-center study was conducted in a local Danish clinical setting, which raises a note of caution regarding transferability. Furthermore, the relatively low number of participants in the workshops may limit the generalizability to other settings. Limited user participation is a well-known challenge in PD, which can impact the outcomes of workshop-developed designs.³¹ Although this may present a limitation in terms of validity, the rich and nuanced data gathered during phase 1^24,35 was essential in ensuring that all users had a say.

Conclusion

Findings from the seven workshops, informed by the phase 1 needs assessment, guided the design and development of the Joint Transition Clinic, an organizational solution featuring tailored consultations to enhance AWEs’ engagement, preparedness, and sense of acknowledgment. Using a PD approach fostered mutual learning, enabling collaboration with AWEs and key stakeholders to develop a mutually acceptable model for transitioning from pediatric to adult healthcare. Hence, the PD approach effectively created a solution that addresses patient needs while ensuring AWEs and their parents had a voice in its development.

Implications

The pilot test of the Joint Transition Clinic (Phase 3) was conducted from January to May 2024. The experiences of both patients and HCPs will be evaluated through field interviews, video recordings, and focus groups. Based on the evaluation, it must be decided whether the solution should be fully implemented in clinical practice.

Footnotes

Acknowledgments

The authors thank all participating adolescents, parents, and HCPs for their time and insights and for sharing their experiences. The authors confirm that they have read the Journal’s position on issues in ethical publication and affirm that this report is consistent with those guidelines. For English editing, we thank Anthony C. Smith.

ORCID iDs

Ole Abildgaard Hansen

Jane Clemensen

Ethical considerations

The Scientific Ethics Committee assessed the study, which granted an exemption from a thorough assessment based on Danish legislation. The study was additionally submitted to the Danish Data Protection Agency with the reference number 20202000-229, and it was included in Region Southern Denmark’s register of research projects with the identification number 21/38124.

Consent to participate

Written informed consent was obtained from all participants.

Author contributions

Ole Abildgaard Hansen: Writing – review & editing, Writing – original draft, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Malene Kaas Larsen: Writing – review & editing, Writing – original draft, Methodology, Investigation, Formal analysis, Data curation, Conceptualization, Supervision. Christoph P. Beier: Writing – review & editing. Anthony C. Smith: Writing – review & editing. Jane Clemensen: Writing – review & editing, Writing – original draft, Methodology, Investigation, Formal analysis, Data curation, Conceptualization, Supervision.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

Data are available upon reasonable request.*

Appendix

References

Aaberg

Bakken

Lossius

, et al. Comorbidity and childhood epilepsy: a nationwide registry study. Pediatrics 2016; 138: e20160921, 09. Research Support, Non-U.S. Gov’t.

Burke

Kirkham

Arnott

, et al. The transition of adolescents with juvenile idiopathic arthritis or epilepsy from paediatric health-care services to adult health-care services: a scoping review of the literature and a synthesis of the evidence. J Child Health Care 2018; 22: 332–358.

Chew

Carpenter

Haase

. Young people's experiences of epilepsy: a scoping review of qualitative studies. Health Soc Work 2017; 42: 167–176.

Thomson

Fayed

Sedarous

, et al. Life quality and health in adolescents and emerging adults with epilepsy during the years of transition: a scoping review. Dev Med Child Neurol 2014; 56: 421–433.

Jennum

Sabers

Christensen

, et al. Welfare consequences for people with epilepsy and their partners: a matched nationwide study in Denmark. Seizure 2017; 49: 17–24.

Wilson

Baxendale

Barr

, et al. Indications and expectations for neuropsychological assessment in routine epilepsy care: report of the ILAE neuropsychology task force, diagnostic methods commission, 2013–2017. Epilepsia 2015; 56: 674–681.

Jennum

Christensen

Ibsen

, et al. Long-term socioeconomic consequences and health care costs of childhood and adolescent-onset epilepsy. Epilepsia 2016; 57: 1078–1085.

Guerrini

. Epilepsy in children. Lancet 2006; 367: 499–524.

Kerr

Nixon

Angalakuditi

. The impact of epilepsy on children and adult patients’ lives: development of a conceptual model from qualitative literature. Seizure 2011; 20: 764–774.

10.

DeSouza

Paintsil

Brown

, et al. Transfer is not a transition–voices of Jamaican adolescents with HIV and their health care providers. AIDS Care 2019; 31: 293–297.

11.

Fegran

Hall

Uhrenfeldt

, et al. Adolescents’ and young adults’ transition experiences when transferring from paediatric to adult care: a qualitative metasynthesis. Int J Nurs Stud 2014; 51: 123–135.

12.

Kerr

Price

Nicholl

, et al. Transition from children’s to adult services for young adults with life-limiting conditions: a realist review of the literature. Int J Nurs Stud 2017; 76: 1–27.

13.

Sattoe

Hilberink

Van Staa

. How to define successful transition? An exploration of consensus indicators and outcomes in young adults with chronic conditions. Child Care Health Dev 2017; 43: 768–773.

14.

Chu

Maslow

von Isenburg

, et al. Systematic review of the impact of transition interventions for adolescents with chronic illness on transfer from pediatric to adult healthcare. J Pediatr Nurs 2015; 30: e19–e27.

15.

Coyne

Betz

. Nursing initiatives and future directions for transition practice and research. Transition from Pediatric to Adult Healthcare Services for Adolescents and Young Adults with Long-term Conditions: An International Perspective on Nurses’ Roles and Interventions 2020; 319–336.

16.

Stroud

Walker

Davis

, et al. Investing in the health and well-being of young adults. J Adolesc Health 2015; 56: 127–129.

17.

Willis

McDonagh

. Transition from children’s to adults’ services for young people using health or social care services (NICE guideline NG43). Arch Dis Child Educ Pract Ed 2018; 103: 253–256.

18.

Le Roux

Gottot

Aupiais

, et al. Professional’s perspectives on care management of young people with perinatally acquired HIV during transition: a qualitative study in adult care setting. PLoS One 2017; 12: e0169782.

19.

Pinzón-Iregui

Ibanez

Beck-Sagué

, et al. “… like because you are a grownup, you do not need help”: experiences of transition from pediatric to adult care among youth with perinatal HIV infection, their caregivers, and health care providers in the Dominican Republic. J Int Assoc Phys AIDS Care 2017; 16: 579–587.

20.

Reeve

Lincoln

. Coping with the challenge of transition in older adolescents with epilepsy. Seizure 2002; 11: 33–39.

21.

Meleis

. Transitions theory: middle range and situation specific theories in nursing research and practice. Springer Publishing Company, 2010.

22.

Meleis

Sawyer

, et al. Experiencing transitions: an emerging middle-range theory. ANS Adv Nurs Sci 2000; 23: 12–28.

23.

Simonsen

Robertson

. Routledge international handbook of participatory design. Routledge, 2013.

24.

Abildgaard Hansen

Clemensen

Beier

, et al. Being an adolescent with epilepsy during the transition from pediatric to adult hospital care: a qualitative descriptive study. Epilepsy Behav 2024; 155: 109780.

25.

Geerlings

Aldenkamp

de With

, et al. Transition to adult medical care for adolescents with epilepsy. Epilepsy Behav 2015; 44: 127–135.

26.

Lugasi

Achille

Stevenson

. Patients’ perspective on factors that facilitate transition from child-centered to adult-centered health care: a theory integrated metasummary of quantitative and qualitative studies. J Adolesc Health 2011; 48: 429–440.

27.

Cramm

Strating

Nieboer

. The role of team climate in improving the quality of chronic care delivery: a longitudinal study among professionals working with chronically ill adolescents in transitional care programmes. BMJ Open 2014; 4: e005369.

28.

Nieboer

Cramm

Sonneveld

, et al. Reducing bottlenecks: professionals’ and adolescents’ experiences with transitional care delivery. BMC Health Serv Res 2014; 14: 47–48.

29.

Clemensen

Rothmann

Smith

, et al. Participatory design methods in telemedicine research. J Telemed Telecare 2017; 23: 780–785.

30.

Clemensen

Holm

Jakobsen

, et al. Participatory design in telehealth research: practical case examples. J Telemed Telecare 2024; 31: 1193–1200.

31.

Spinuzzi

. The methodology of participatory design. Tech Commun 2005; 52: 163–174.

32.

Duus

. Aktionsforskning: en grundbog. In: Aktionsforskning: en grundbog. Samfundslitteratur, 2012, pp. 113–128.

33.

Williamson

Bellman

Webster

. Action research in nursing and healthcare. Action Research in Nursing and Healthcare 2012; 51–65.

34.

Ravn Jakobsen

Hermann

Søndergaard

, et al. Development of an mHealth application for women newly diagnosed with osteoporosis without preceding fractures: a participatory design approach. Int J Environ Res Publ Health 2018; 15: 330.

35.

Abildgaard Hansen

Clemensen

Beier

, et al. Living with epilepsy in adolescence and young adulthood transitioning from pediatric to adult hospital services: a systematic review and meta-synthesis of qualitative studies. Epilepsy Behav 2024; 158: 109955.

36.

Brandt

Binder

Sanders

EB-N

. Tools and techniques: ways to engage telling, making and enacting. In: Routledge international handbook of participatory design. Routledge, 2012, pp. 145–181.

37.

Hansen

Harboe

Døssing

, et al. Safety and feasibility of an intensive epilepsy nurse-based treatment course. Seizure 2021; 86: 35–40.

38.

Kemmis

. Participatory action research and the public sphere. Educ Action Res 2006; 14: 459–476.

39.

Birt

Scott

Cavers

, et al.

Member checking: a tool to enhance trustworthiness or merely a nod to validation?

Qual Health Res 2016; 26: 1802–1811.

40.

Denecke

von Kaenel

Miletic

, et al. How to design successful participatory design workshops for digital health solutions? Caring is sharing–exploiting the value in data for health and innovation. IOS Press, 2023, pp. 641–645.

41.

Ørngreen

Levinsen

. Workshops as a research methodology. Electron J e Learn 2017; 15: 70–81.

42.

Jungk

Müllert

. Future workshops: how to create desirable futures. Institute for Social Inventions, 1987.

43.

Bødker

Grønbæk

. Design in action: from prototyping by demonstration to cooperative prototyping. In: Design at work. CRC Press, 2020, pp. 197–218.

44.

Bødker

Grønbæk

Kyng

. Cooperative design: techniques and experiences from the Scandinavian scene. In: Readings in human–computer interaction. Elsevier, 1995, pp. 215–224.

45.

Association

. World medical association declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA 2013; 310: 2191–2194.

46.

Kanstrup

Bertelsen

Nøhr

. Patient innovation: an analysis of patients’ designs of digital technology support for everyday living with diabetes. Health Inf Manag J 2015; 44: 12–20.

47.

Berens

Jan

Szalda

, et al.

Young adults with chronic illness: how can we improve transitions to adult care?

Pediatrics 2017; 139: e20170410.

48.

Oppong

Jowett

Nicholls

, et al. Joint protection and hand exercises for hand osteoarthritis: an economic evaluation comparing methods for the analysis of factorial trials. Rheumatology 2014; 54: 876–883.

49.

Brooks

Smith

Cohen

, et al. UK guideline on transition of adolescent and young persons with chronic digestive diseases from paediatric to adult care. Gut 2017; 66: 988–1000.

50.

Carrizosa

Appleton

, et al. Models for transition clinics. Epilepsia 2014; 55: 46–51.

51.

Geerlings

Aldenkamp

Gottmer-Welschen

, et al. Evaluation of a multidisciplinary epilepsy transition clinic for adolescents. Eur J Paediatr Neurol 2016; 20: 385–392.

52.

Disabato

Cook

Hutton

, et al. Transition from pediatric to adult specialty care for adolescents and young adults with refractory epilepsy: a quality improvement approach. J Pediatr Nurs 2015; 30: e37–e45.

53.

Smith

Myson

Gibbon

. A teenager epilepsy clinic: observational study. Eur J Neurol 2002; 9: 373–376.

54.

Campbell

Biggs

Aldiss

, et al. Transition of care for adolescents from paediatric services to adult health services. Cochrane Database Syst Rev 2016; 4: Cd009794.

55.

AaoPCR

AAP

White

Cooley

Transitions Clinical Report Authoring Group; American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians . Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 2019; 143: e20183610.

56.

Shaw

Southwood

McDonagh

, et al. Developing a programme of transitional care for adolescents with juvenile idiopathic arthritis: results of a postal survey. Rheumatology 2004; 43: 211–219.

57.

Crowley

Wolfe

Lock

, et al. Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child 2011; 96: 548–553.

58.

Steinbeck

Shrewsbury

Harvey

, et al. A pilot randomized controlled trial of a post‐discharge program to support emerging adults with type 1 diabetes mellitus transition from pediatric to adult care. Pediatr Diabetes 2015; 16: 634–639.

59.

Mackie

Islam

Magill-Evans

, et al. Healthcare transition for youth with heart disease: a clinical trial. Heart 2014; 100: 1113–1118.

60.

Guba

. Criteria for assessing the trustworthiness of naturalistic inquiries. Ectj 1981; 29: 75–91.

Building a bridge for transition: A user-driven study on developing a transition clinic for adolescents with epilepsy

Abstract

Keywords

Background

Material and methods

Study design

Setting

Participants

The reflective and iterative process during the stages of workshops

Workshops

Workshop 1: Generating ideas toward a solution concept

Workshop 2: Refining and actualizing ideas and solutions

Workshop 3–7: “Laboratory test” - developing the joint transition clinic with HCPs

Ethics

Results

Participant characteristics

Workshop 1: Generating ideas to inform a solution

Workshop 2: Refining and actualizing ideas and solutions

Workshop 3–7: “Laboratory test” - developing the joint transition clinic with HCPs

Discussion

Strengths and limitations

Conclusion

Implications

Footnotes

Acknowledgments

ORCID iDs

Ethical considerations

Consent to participate

Author contributions

Funding

Declaration of conflicting interests

Data Availability Statement

Appendix

References