Development of BreeZe: a self-management support intervention for burn survivors informed by evidence, theory, and stakeholder co-creation

Abstract

Background

Following a severe burn injury, individuals embark on a lifelong process of managing and integrating the physical, psychological, and social consequences, including functional limitations, fatigue, altered body image, and psychological trauma. To aid in this process, healthcare professionals can provide self-management support. To date, however, no self-management support intervention has been developed to meet the unique needs and preferences of burn survivors within the context of burn aftercare. In this article, we describe the process of developing a self-management support intervention for burn aftercare and present the resulting intervention.

Methods

A structured, multi-stage process was followed from May 2021 to December 2023 to develop the intervention, guided by established frameworks for the development and adaptation of complex interventions. The process included evidence review, stakeholder consultation, and participatory observations to identify needs, inform design decisions, and ensure contextual fit. A hybrid approach to intervention development was adopted, combining adaptation of an existing intervention with augmentation through five co-creative workshops involving burn survivors, healthcare professionals, researchers, and burn care decision-makers. The final prototype was refined through expert reviews and real-world pilot-testing to assess its feasibility and acceptability.

Results

The structured, multistage process resulted in a self-management support intervention addressing the physical, psychological, and social needs of burn survivors. The intervention was named BreeZe (Brandwonden en Zelfmanagement/Burns and self-management). Intervention Core components of the intervention include a holistic care approach, goal setting and action planning, solution-focused brief therapy, motivational interviewing, case management, and the acknowledgment and involvement of informal caregivers. BreeZe is supported by materials like the Self-Management Web, a patient booklet, training for healthcare professonials, and a comprehensive manual. BreeZe is delivered by trained healthcare professionals and is structured into five phases, focusing on holistic needs assessment, goal setting, progress monitoring, and ongoing motivational support.

Conclusions

The structured, multi-stage development process was thorough and carefully considered, balancing diverse stakeholder perspectives with scientific evidence and theory. BreeZe offers an evidence-based model tailored to the Dutch context that can be integrated into routine practice that shows the potential to enhance the effectiveness of care and support a more collaborative, patient-centred approach.

Trial registration

Not applicable.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12913-025-13849-5.

Background

Over the past 30 years, rapid advancements in healthcare have significantly reduced burn-related mortality rates in high- and middle-income countries [1]. As a result, the number of patients with major burns who survived increased, and these individuals face a lifelong process of managing and integrating the physical, psychological, and social consequences of their injuries [2]. Examples of such consequences include functional limitations, itching, pain, aesthetic concerns, fatigue, and psychological trauma.

Burn survivors, much like individuals with other chronic conditions, must learn to manage and integrate the consequences of their injuries as part of daily life [3]. Self-management can be defined as “the ability of the individual in conjunction with family, community, and healthcare professionals to manage symptoms, treatments, lifestyle changes, and psychosocial, cultural, and spiritual consequences of health conditions” [4, 5]. For burn survivors, self-management encompasses activities such as wound and scar care, maintaining mobility through exercising, accepting changes in body image, and finding ways to reintegrate socially and professionally [3]. However, due to the sudden onset of a burn injury and the overwhelming burden of its consequences, effective self-management may not be self-evident after discharge from a burn centre.

To aid burn survivors, healthcare professionals can provide self-management support after discharge from a burn centre, which can be defined as “the systematic provision of education and supportive interventions to improve burn survivors’ skills and confidence in managing their health problems, including regular assessment of progress and problems, goal setting, and problem-solving support” [6, 7]. Self-management support represents a shift from merely managing a chronic condition – focused on symptom and disease control – to helping individuals manage well with their chronic condition, which encompasses broader goals of health, wellbeing, and overall quality of life [8]. Previous research has demonstrated that self-management support interventions can lead to significant improvements in quality of life and reductions in healthcare service utilization, with the strongest evidence in diabetes, respiratory disorders, cardiovascular disorders, and mental health [9, 10]. In addition, growing pressure on healthcare systems – due to workforce shortages, an ageing population, and declining interest in care professions – makes empowering patients through self-management not just beneficial, but increasingly essential for sustainable care delivery [9, 11–13]. For burn survivors, however, self-management support interventions are lacking. A growing number of studies in burn care do pay attention to self-management, self-management support, or incorporate elements thereof [3, 14–19]. However, not all of these can be characterised as intervention studies, and the intervention studies that do exist tend to focus on specific outcomes (e.g., chronic pain) or domains (e.g., medical management). A comprehensive, evidence-based and theory-informed self-management support approach tailored to the burn aftercare phase and focusing on the ability of the individual in conjunction with family, community, and healthcare professionals to manage symptoms, treatments, lifestyle changes, and psychosocial, cultural, and spiritual consequences of burns remains absent.

In this paper, we report on the development of a new self-management support intervention specifically designed for burn survivors after discharge from a burn centre and present the resulting intervention. We do this by outlining each stage of the development, sharing lessons learned, and presenting the final version of the intervention.

Methods

Study design

A self-management support intervention should be considered a complex intervention [20], as it must be tailored to individual needs and address multiple life domains such as medical management, emotional well-being, and social roles [21, 22]. It involves interacting components, requires sensitivity to context, and often entails a transformative learning process for healthcare professionals, as well as flexibility across care settings [23]. This complexity calls for a dynamic and iterative development process that includes stakeholder co-creation, integration of up-to-date research, use of relevant theoretical frameworks, articulation of a program theory, comprehensive data collection, and a deep contextual understanding [24]. We developed a self-management support program addressing the physical, psychological, and social needs of burn survivors, named BreeZe (Brandwonden en Zelfmanagement/Burns and self-management) in line with such a process. It was informed by frameworks and guidance from Hawkins and colleagues [25], as well as by the more recent guidance for developing new complex interventions [24], the guidance for adapting existing interventions to new contexts [26], and the Co-creation Impact Compass [27]. Based on these, the process was structured in five stages executed between May 2021 and December 2023 (Fig. 1): 1) Preparation; 2) Evidence review, stakeholder consultation, and participatory observations; 3) Choosing the pathway for intervention development and adaptation; 4) Adapt and augment an existing intervention to Dutch burn aftercare; 5) Prototyping. The objectives of the methods used, the topics explored, and the key lessons derived from each stage are summarized in Table 1.

Fig. 1.

The process for developing a new self-management support intervention for burn survivors

Table 1.

Key results from stage 1 to 5

Objective	Activity	Results
Stage 1. Preparation
Identify stakeholders	Stakeholder mapping	Identified stakeholders in Dutch burn care
Discuss stakeholders’ roles	Participation game	Stakeholders’ involvement at different stages were mapped (see Additional File 5)
Establish consensus on the key steps of development	Process mapping	Key development steps were outlined (see Fig. 1)
Stage 2. Evidence review, stakeholder consultation, and participatory observations
Develop a comprehensive understanding of existing evidence on self-management and self-management support	Evidence map	Key findings from our pragmatic literature search:
		• Self-management support is shaped by interdependent factors [28]
		• Self-management support integration requires a mind-set shift, not just training [23]
		• Burn survivors self-manage similarly to individuals with chronic conditions [3]
		• Face-to-face, multicomponent, skill-enhancing interventions improve outcomes [29]
		• Key core functions of self-management support interventions are: adapt to readiness to change, include goal setting and action planning [29]
		• The intrinsic processes motivation and self-efficacy are crucial for success [30]
		• Patients expect healthcare professionals to play an active role in self-management [21]
		• Patients’ attitudes, needs, and preferences for self-management support vary [31]
		• No studies found on the perspectives of healthcare professionals working in burn aftercare
Identify whether effective interventions exist for burn survivors, what their components are, and what impact they report.	Systematic review	• Only one eligible study identified [14]; with low methodological quality
		• This study suggests that a face-to-face educational intervention during hospitalization and surrounding surgical intervention may reduce anxiety and increase comfort
		• The intervention is single-component (only education) and takes place during hospitalization
Identify the needs and preferences for self-management support after burn centre discharge among burn survivors	Interviews with burn survivors	• The moment of discharge appeared to be a critical touchpoint with lasting impact on survivors’ ability to integrate the consequences of their burns into daily life
		• A strong, ongoing partnership with a trusted healthcare professional was deemed essential for self-management.
Gain a deeper understanding of their experiences and the challenges informal caregivers face in supporting burn survivors	Interviews with informal caregivers	• Informal caregivers needed recognition and support from both their social and professional networks to sustain their role.
		• Informal caregivers often struggled to balance caregiving with their own wellbeing.
Explore how healthcare professionals already provide self-management support to burn survivors	Interviews with healthcare professionals [32]	• Healthcare professionals varied in how they provide self-management support
		• These variations reflected differences in role interpretation
		• Support could be improved through training and tools to identify burn survivor needs
		• Healthcare professionals needed guidance in managing role boundaries and responsibilities
		• Clear team roles, shared priorities, and time for providing support were also deemed essential
Explore how burn care decision-makers view the topics “self-management” and “self-management support” and gain insight into routine burn aftercare	Unstructured consultations with burn care decision-makers and conducting participatory observations	• Divergence in what constitutes aftercare, with continuous nursing support in two burn centres and start of care after wound closure in another.
		• Differences in how burn aftercare was structured across three Dutch burn centres.
		• Varying discipline roles and responsibilities after discharge – burn nurse practitioners, burn aftercare nurses, and burn nurses handling transmural care.
		• Significant variation in the time allocated for aftercare across the centres.
Stage 3. Defining the pathway for intervention development and adaptation
Identify candidate interventions	Explore the (grey) literature	• The ZENN (ZElfmanagement Na Niertransplantatie) intervention [33] emerged as the most suitable candidate for adaptation.
Critical assessment of each candidate intervention’s suitability for adaptation	Organize two workshops	• A hybrid “adapt and augment” approach [26] to translating the ZENN intervention to burn aftercare was determined to be necessary.
Stage 4. Adapt and augment the intervention to Dutch burn aftercare
Adapt and augment the intervention, including its core functions and materials, for Dutch burn aftercare, while developing a corresponding program theory	Organize multiple workshops; Regular meetings with healthcare professionals and burn care decision-makers	• The results of stage 4 and 5 concerned adjustments to the ZENN intervention as shown in Table 3.
Stage 5. Prototyping
Identify issues around feasibility and acceptability	Expert review by original developers	• The results of stage 4 and 5 concerned adjustments to the ZENN intervention as shown in Table 3.
	Healthcare professional and stakeholder review	• The results of stage 4 and 5 concerned adjustments to the ZENN intervention as shown in Table 3.
	Preliminary testing at a burn outpatient clinic	• The results of stage 4 and 5 concerned adjustments to the ZENN intervention as shown in Table 3.
Formal approval of the new self-management support intervention	Presentation for the the steering committee of the Alliance of Dutch Burn Care.	• The adapted and augmented intervention, including all core functions, materials, and theory of change, was formally approved at the three Dutch burn centres. The intervention is called BreeZe (Brandwonden en Zelfmanagement).

The intervention development has been reported following the GUIDance for the rEporting of intervention Development checklist (GUIDED) [34] (see Additional File 1).

Context and setting

The Netherlands has three dedicated burn centres located at the Maasstad Hospital in Rotterdam, the Martini Hospital in Groningen, and the Red Cross Hospital in Beverwijk. These facilities collaborate with specialized trauma centres and other hospitals to form an integrated burn care network.

Each year, these centres treat approximately 1000 burn survivors [Dutch Burn Rository (DBR R3), the Netherlands]. Upon admission to a burn centre, patients undergo an assessment to determine the severity of their injuries, followed by a tailored treatment plan. Of the admitted burn patients, 11.3% require intensive care during their stay [DBR R3, the Netherlands]. The average hospitalization lasts 9.9 days, with a median stay of 4 days (based on data from 2020 to 2023; DBR R3, the Netherlands]. After discharge, aftercare typically includes outpatient visits, home nursing, physical therapy, scar therapy, or, in cases requiring more intensive rehabilitation, a temporary admission to a rehabilitation centre.

Each burn centre is staffed by a multidisciplinary team specializing in both burn emergency treatment and aftercare for both children and adults. These teams include surgeons (both general surgeons, plastic surgeons, and specialized burn physicians), intensivists, pediatricians, burn nurse practitioners, ICU and burn nurses, social workers, physiotherapists, occupational therapists, dietitians, and psychologists. Aftercare is coordinated by burn physicians, burn nurse practitioners, or dedicated burn aftercare nurses, who serve as key contacts for burn survivors throughout their recovery.

Development stage 1: preparation

The first stage of the development aimed to identify relevant stakeholders and define their roles in the development process. We began by identifying stakeholders using the co-creative tool stakeholder mapping [35]. Through brainstorming and listing all relevant individuals, we identified key stakeholders, including professionals from the multidisciplinary burn aftercare teams of the three Dutch burn centres, burn survivors, burn centre team leaders, burn centre department heads, and the Dutch Burns Foundation. To better understand the relationships among these stakeholders and determine the appropriate level of involvement, we created a power versus interest grid [35] in combination with the participation game [36]. The power versus interest grid is a two-by-two matrix that visually maps stakeholders based on their political interest in the new intervention (y-axis) and their organizational power or control over the burn care system (x-axis). This tool helped us prioritize the stakeholders because it was neither feasible nor necessary to engage all with the same level of intensity. We then engaged with the identified stakeholders to explore their desired roles throughout the process. To actively discuss and shape their involvement, we employed the participation game – a serious game designed as an interactive and safe platform for discussion. This game is grounded in the participation ladder model [37], which defines levels of participation ranging from passive information sharing to active decision-making. Stakeholders with a more central role in the process participated in group sessions using the game, while those with a more peripheral role were engaged in individual conversations guided by the same principles. Stakeholder roles and tasks developed iteratively over time and were continuously refined as the project progressed. An overview of the final roles and levels of engagement is provided in Additional File 2.

This first stage also involved process mapping [38] during three face-to-face workshops to build consensus on the development process. The research team (including a patient expert, two burn nurse practitioners, a burn physician, one junior researcher, and three senior researchers) reviewed relevant examples and guidance documents and engaged in structured discussions to define key principles, essential actions, and their intended sequence. At this point, the process could only be mapped up to Stage 3, as two potential pathways – developing a new complex intervention or adapting an existing one – remained under consideration. From Stage 1 onwards, the process map was continuously refined during bi-monthly team meetings to align with emerging insights and evolving needs. The final version is shown in Fig. 1.

Development stage 2: evidence review, stakeholder consultation, and participatory observations

The second stage aimed to review the literature on self-management support, gather multiple perspectives about self-management support in burn care, and get insight into current practices in routine burn aftercare.

Literature review

To develop a comprehensive understanding of existing evidence on self-management and self-management support, we conducted a pragmatic literature search to create an evidence map [39]. This involved a search across a broad field to identify knowledge gaps and present the findings in a user-friendly, searchable database. The search focused on keywords such as “self-management” and “self-management support”, with a focus on publications from the past ten years (2012–2022) and was conducted at MEDLINE (through PubMed) (see Additional File 3). Snowballing was used to track down additional relevant studies. We identified evidence on nurses’ perspectives, showing that providing self-management support in patients with chronic conditions is influenced by multiple interdependent factors [28]. Importantly, integrating self-management support is not an automatic outcome of training but requires a transformative learning process to trigger the necessary shift in mindset [23]. We found no studies on healthcare professionals’ views on self-management support in burn aftercare. Only one study examined self-management in burn survivors, showing that they self-manage similarly to individuals with other chronic conditions [3]. We also identified evidence on effective self-management support interventions, demonstrating that face-to-face, multicomponent interventions tailored to enhance patients’ self-management skills can improve outcomes in patients with chronic conditions [29]. These interventions should be adapted to burn survivors’ readiness to change, incorporate action planning, and focus on goal setting. Another study emphasized that successful interventions in patients with chronic conditions should also target intrinsic processes, such as motivation and self-efficacy [30]. Patient with chronic conditions’ perspectives on self-management highlighted that they do not manage on their own but expect healthcare professionals to play a comprehensive role [21]. We also found evidence suggesting that patient with chronic conditions’ attitudes, needs, and preferences for self-management support vary [31].

In addition, we conducted a systematic review to examine the effects of self-management support interventions on health-related patient-reported outcomes in burn survivors. The review aimed to identify whether effective interventions exist for this population, what their components are, and what impact they report. We searched five major databases (MEDLINE, CINAHL, Cochrane, EMBASE, and PsycINFO) for studies published between 2010 and 2024, using search terms including “self-management support”, “burns”, and “intervention” (see Additional File 3). The review yielded at the time only one eligible study [14], which was of low methodological quality. This study [14] suggested that a face-to-face single-component educational intervention, provided during hospitalization and around the time of a surgical procedure (skin grafting), may help reduce anxiety and increase comfort levels.

Interviews with burn survivors

Given the limited evidence on burn survivors’ specific needs and preferences for self-management support in burn aftercare – beyond indications that they seem to self-manage in ways comparable to individuals with chronic conditions [3] – we conducted semi-structured interviews with 17 burn survivors who had been admitted to one of the three Dutch burn centres within the past five years and had been discharged at least four weeks previously (topic guide: Additional File 4). Using maximum variation sampling strategy [40], we ensured diversity in age, sex, burn severity, time since discharge, and treatment location. Interviews were analysed using a Directed Content Analysis approach [41], supported by the Self-Management Support Needs model [21]. In light of the aim of the development process, the interviews highlighted two particularly important insights. First, the moment of discharge emerged as a critical touchpoint with lasting impact on burn survivors’ ability to integrate the consequences of their burns into daily life. This period was described as one in which additional, targeted support is often needed. Second, a strong, ongoing partnership with a trusted healthcare professional was seen as essential. Burn survivors valued being truly seen and understood, and emphasized the importance of having a consistent point of contact who could provide both emotional and practical support. A full account of the interview study is provided in a separate manuscript, currently under review.

Interviews with informal caregivers

During the interviews with burn survivors, it became apparent that most relied on informal caregivers – individuals from their immediate environment who played a key role in helping them manage and integrate the consequences of their burns after discharge, for example partners. This aligns with the view that condition management is often a shared, family-based process [42]. To gain deeper insight into their experience, we conducted semi-structured interviews with 12 informal caregivers, recruited via the interviewed survivors and the Dutch Association of Burn Survivors (topic guide: Additional File 4). Interviews were analysed using Interpretative Phenomenological Analysis [43], a qualitative method suited to exploring complex, ambiguous, emotionally charged experiences that have not been described before. Several themes emerged, some of which are particularly relevant to the development of self-management support interventions. Informal caregivers emphasized that the sustainability of their caregiving role largely depended on being acknowledged – not only by their social network, but also by hospital staff and home care services. Another key finding was the tension caregivers experienced between continuing their caregiving responsibilities and maintaining their own wellbeing. Many reported a tendency to prioritize the burn survivor’s needs at the expense of their own, often neglecting their own physical and emotional health. A full account of the interview study is provided in a separate manuscript, currently under review.

Interviews with healthcare professionals

Given the absence of studies on healthcare professionals’ views on self-management support in burn aftercare, we conducted semi-structured interviews to explore their perspectives. We defined self-management support as enabling individuals to manage and integrate the consequences of their burns in order to “live well”, and we posited that all burn care professionals are, consciously or not, already engaged in supporting self-management to some degree in aftercare. Using an inductive, interpretative qualitative approach, we interviewed a theoretical sample [44] of six burn physicians, three burn nurse practitioners, three burn aftercare nurses, two occupational therapists, and two medical psychologists working in the three participating Dutch burn centres (topic guide: Additional File 4). Data were analysed using a constant comparative approach described by Charmaz [45]. The interviews showed considerable variation in the self-management support strategies – such as providing information, instilling confidence in burn survivors, and shifting the focus to patient-centred needs – reflecting how professionals interpret their own role, that of the patient, and other disciplines within the team. This variation was rooted in three core tensions: (1) difficulty recognizing burn survivors’ support needs after discharge, (2) navigating the boundaries of one’s own professional responsibility, and (3) unclear team roles, conflicting priorities, and time constraints. The findings suggest the need for targeted training in communication skills and a holistic needs assessment tools. Additionally, clarifying roles within each team may enhance collaboration and effectiveness. Finally, prioritizing burn survivors’ values and needs, and allocating more time for personalized self-management support, may need to be considered. A full account of the interview study is provided in a separate manuscript, currently under review, and a preprint is available [32].

Consultations with burn care decision-makers and participatory observations

In addition to the interviews and literature reviews, we conducted unstructured consultations with burn care decision-makers (i.e., burn centre team leaders, burn centre department heads, members of the steering committee of the Alliance of Dutch Burn Care) to gather broader contextual insights. We also carried out eight participatory observations during outpatient aftercare consultations at the three Dutch burn centres, using qualitative shadowing techniques [46]. Shadowing allowed us to observe real-time care practices and organizational dynamics. Data from both activities were recorded as field notes and thematically analysed [47]. Findings showed considerable variation between centres in how burn aftercare is organized – particularly regarding who (which discipline) takes on responsibilities in burn aftercare. In addition to the role of the burn physician, one centre relies on burn nurse practitioners (Nursing Practitioner, NP), another employs burn aftercare nurses (Registered Nurse, RN), and a third includes burn aftercare nurses (Registered Nurse, RN) with dedicated tasks for transmural care. As a result, roles, responsibilities, and available time for nurses differed considerably across the centres. The concept of what constitutes “aftercare” also varied: two centres providing continuous nursing support throughout the entire continuum post-discharge, while one began aftercare only after wound closure. In addition, there were also nuanced variations in how and when allied healthcare professionals became involved throughout the patient journey, influencing the type and timing of support burn survivors received.

Development stage 3: defining the pathway for intervention development and adaptation

Stage 3 focused on deciding whether to develop a new self-management support intervention or adapt an existing one for burn aftercare. Based on the findings of stage 1 and 2, we formed an Intervention Development Group (IDG) comprising four researchers, two patient experts, a burn physician, and two burn nurse practitioners. A systematic consensus-building process was facilitated by the lead researcher, following the tentative roadmap on consensus-building processes described by Leising and colleagues [48], with a strong emphasis on partnership-based collaboration [37].

The IDG set out to identify self-management support interventions that could potentially be adapted for burn aftercare. Therefore, the IDG expanded the search scope both within the scientific literature – beyond the burn survivor population – and grey literature [49], thereby including unpublished interventions currently being studied or implemented in other patient populations. The IDG critically assessed identified interventions for adaptation suitability using six criteria [24, 26]: (1) the intervention-context fit; (2) the availability of detailed information about the intervention; (3) similarities between the original and the new context; (4) the robustness of the effectiveness claims; (5) usability in terms of intellectual property; and (6) required costs and resources for usage. To operationalize the first criterion – intervention-context fit – the IDG developed specific fit indicators grounded in the findings from stage 2 (see Table 2).

Table 2.

The criteria a self-management support intervention in burn aftercare should adhere to

Source:	Fit indicators. A self-management intervention in Dutch burn aftercare should:
Literature review	1. Emphasize a structured yet flexible approach tailored to the individual needs of burn survivors;
Literature review	2. Include face-to-face guidance;
Literature review	3. Be multicomponent;
Literature review	4. Allow adaptations based on the burn survivor’s readiness to change;
Literature review	5. Incorporate action planning and goal-setting as intervention strategies;
Interviews with burn survivors	6. Create opportunities to initiate self-management support around the time of discharge;
Interviews with burn survivors	7. Encourage a continuous, trusting relationship between burn survivors and a consistent healthcare professional;
Interviews with informal caregivers	8. Acknowledge informal caregivers as partners in care;
Interviews with informal caregivers	9. Create space to involve informal caregivers in self-management support;
Interviews with professionals	10. Clarify which healthcare professional is responsible for delivering self-management support and at what stages;
Interviews with professionals	11. Provide training and tools to help healthcare professionals identify burn survivors’ self-management needs and align with their intrinsic self-management processes;
Interviews with professionals	12. Avoid adding extra workload for healthcare professionals;
Consultations with burn care decision-makers and participatory observations	13. Accommodate the differences across the three Dutch burn centres;
Consultations with burn care decision-makers and participatory observations	14. Accommodate the differences across the three Dutch burn centres in what constitutes “aftercare”.

In total, 22 self-management interventions were reviewed across two workshops. Twenty-one were deemed unsuitable due to poor documentation (including a lack of available materials), an overly biomedical focus, or complex and costly implementation requirements (e.g., requiring an app). The ZENN (ZElfmanagement Na Niertransplantatie, self-management after kidney transplantation) intervention [33] was the only intervention deemed suitable for adaptation to burn care. The ZENN intervention aims to enhance patients’ self-management skills in order to integrate their treatment- and life goals, thereby improving quality of life and health-related outcomes [33]. It includes four key elements: [1] a general structure with room for individual tailoring, [2] a holistic approach, [3] shared-decision making between nurse practitioner (NP) and patient, and [4] patient empowerment. Grounded in Self-regulation Theory [50], the intervention incorporates techniques from Motivational Interviewing [51] and Solution-Focused Brief Therapy (SFBT) [52]. The ZENN intervention is structured over four sessions. In the first session, a Self-Management Web [33] is used to holistically assess self-management challenges across 14 life areas, such as emotional well-being, mobility, and work. Based on this assessment, the nurse practitioner and patient use solution-focused techniques to set SMART goals and create action plans. Subsequent sessions focus on tracking progress, addressing new challenges, and reinforcing goal attainment. Follow-up sessions include a combination of in-person and telephone consultations, and double appointments with NPs ensure sufficient time to address patient concerns. The intervention emphasizes setback prevention and the generalization of skills to other areas of life.

The ZENN intervention was considered well-suited for adaptation, sufficiently meeting all six eligibility criteria. First, it showed a strong intervention-context fit, aligning sufficiently with the established fit criteria for burn care (Table 2). Second, comprehensive documentation from the original developer (EKM) – including matrices of change objectives, delivery strategies, and materials such as e-learning modules, patient workbooks, and resources for healthcare professionals – provided the IDG with a clear understanding of its structure and working mechanisms. Third, despite being developed for kidney transplant patients, the IDG noted that both contexts share similar challenges in self-management, with certain differences that were deemed manageable. Importantly, the IDG determined that the underlying change objectives did not need to be adjusted when applied in burn aftercare. Fourth, evidence of effectiveness was promising: a pilot study [53] reported improvements in patient-centred care and quality of life, particularly in the physical role domain. Furthermore, psychosocial topics were addressed more comprehensively in the intervention group, demonstrating effectiveness in meeting patients’ needs. At the time, a multicentre, stepped-wedge randomized controlled trial [54] was ongoing to evaluate its broader impact. Fifth, intellectual property rights posed no barriers, as the original developer (EKM) had made the intervention available for adaptation. Finally, the costs associated with adaptation for and implementation in burn aftercare were considered low, supporting its feasibility for burn aftercare.

Despite its strengths, a direct adaptation of ZENN was deemed unsuitable, as the intervention’s procedures, activities, sequence, delivery, and materials as they were, were incompatible with the context of Dutch burn care. This was due to several key differences across the three Dutch burn centres, including variations in how aftercare is organized, the acute and traumatic nature of burn injuries from the patient’s perspective, and the diverse roles and responsibilities of healthcare professionals following discharge from the burn centre. In light of these differences, the IDG opted for a hybrid approach – an “adapt and augment” strategy [26] – in which ZENN would be tailored to the burn aftercare context.

Development stage 4: adapting and augmenting the intervention for the context of Dutch burn aftercare

In stage 4, the IDG held five workshops to iteratively adapt and augment the selected intervention to the context of Dutch burn aftercare. These workshops involved discussing the content, providing feedback, refining ideas, and incorporating further feedback as the process progressed.

During these workshops, the IDG engaged in several key activities [24, 26]: (1) articulating the program theory; (2) identifying and responding to barriers and facilitators that may influence effectiveness and implementation; (3) adapting and augmenting the intervention, including its core functions and materials; (4) considering potential unintended consequences that could arise from implementation in the new context; and (5) evaluating the costs and resources required for implementation in Dutch burn aftercare. Healthcare professionals, burn care decision-makers and one of the developers of the original ZENN intervention (EKM) provided feedback on draft versions of the intervention, including its core functions, delivery strategies, and materials.

To support the articulation of the program theory, the IDG drew on the matrices of change objectives established by the original development team of the ZENN intervention and remained aligned with the principles of the Intervention Mapping (IM) approach [55]. To guide decision-making about whether and how to adapt and augment the intervention, the IDG applied the Model for Adaptation Design and Impact (MADI) [56] prospectively during the workshops. In line with this model, potential adaptations were assessed against core functions, goals, and expected impacts to minimize risks of negative outcomes, supported by the comprehensive documentation provided by the original developer (EKM). This structured approach helped the IDG weigh trade-offs, anticipate unintended consequences, and refine the intervention to enhance contextual fit.

The iterative process continued until full consensus was reached among all members of the IDG to proceed with prototyping.

Development stage 5: prototyping

To gain preliminary feedback on the acceptability and feasibility of the intervention, the draft version underwent real-world testing, review by the original developer (EKM), and stakeholder review. Feedback from these sources was systematically processed by the IDG over three workshops.

First, five burn survivors currently receiving care, along with two burn nurse practitioners and a burn physician, tested various intervention materials at the burn outpatient clinic. They provided feedback, particularly focusing on improving the readability, design, and language of patient materials, such as the burn survivors’ workbook, to make it more accessible and engaging. Simultaneously, the core intervention functions, delivery strategies, manual, and supporting materials were sent to the original ZENN developer (EKM) for expert review, focusing on conceptual alignment, appropriateness, and suggested refinements. In parallel, all healthcare professionals and decision-makers from the three Dutch burn centres were invited to review the draft manual which covered all aspects of the intervention, assessing its acceptability and feasibility in routine practice, and considering how it could be integrated into existing workflows.

To guide how input from these sources was incorporated, the IDG continued to apply the MADI [56]. All changes made during stages 4 and 5 were also documented using the MADI [56] (Table 3). The final intervention, including its core components, delivery strategies, materials, and theory of change, was approved by the steering committee of the Alliance of Dutch Burn Care at the end of stage 5.

Table 3.

Summary of adaptations and augmentations – based on the model for adaptation design and impact (MADI)^a [56]

What is modified?	Nature of A/A?	Who participated in A/A decision-making?	For whom/what is the A/A made?	Is the adaptation consistent with core functions, or does it constitute an augmentation that introduces a new core function?	Goal and rationale for A/A	Was the A/A made with consideration of its impact on outcomes and processes?	Was the A/A prompted by an anticipated barrier?	Which outcomes are expected to be affected by this A/A? b,c
Intervention title
Changed the name of the “ZENN” intervention to the “BreeZe” intervention	Contextual tailoring	IDG	All stakeholders in burn care	Consistent with core functions	To align the intervention framing with the perspectives of all stakeholders in burn care	Yes	Yes, overcoming the “not-invented-here syndrome” and clarifying that the intervention is an adapted version	Adoption (+)
								Acceptability (+)
								Appropriateness (+)
								Feasibility
								Fidelity
								Cost
								Penetration
								Sustainability (+)
								Patient outcomes
								Service outcomes
Intervention goal
N/A
Intervention core functions
Added case management as an intervention core function	Adding an element	IDG	Burn survivors and healthcare professionals	Augmentation introducing a new core function	To accommodate the differences across the three Dutch burn centres in professionals working in burn aftercare, to encourage a continuous, trusting relationship between burn survivors and a consistent healthcare professional, and to clarify which healthcare professional is responsible for delivering self-management support and at what stages	Yes	Yes, ambiguity in roles and responsibilities in multidisciplinary burn aftercare teams and potential lack of effectiveness	Adoption (+)
								Acceptability (+)
								Appropriateness (+)
								Feasibility (-)
								Fidelity
								Costs
								Penetration
								Sustainability
								Patient outcomes (+)
								Service outcomes (+)
Structurally integrated the acknowledgement and involvement of informal caregivers across all phases of the intervention	Adding an element	IDG	Informal caregivers, burn survivors, and healthcare professionals	Augmentation introducing a new core function	To acknowledge informal caregivers as partners in care and to create space for informal caregiver’s involvement	Yes	Yes, informal caregivers’ limited capacity to support burn survivors	Adoption
								Acceptability
								Appropriateness (+)
								Feasibility (-)
								Fidelity
								Costs
								Penetration
								Sustainability
								Patient outcomes (+)
								Service outcomes (+)
Intervention materials
Translated the Self-Management Web to English, German, Polish and Arabic	Linguistic tailoring	IDG, healthcare professionals; professional language agency	Burn survivors and healthcare professionals	Consistent with core functions	In response to healthcare professionals’ experiences of frequent contact with patients from diverse cultural backgrounds; languages were selected based on the most prevalent non-Dutch language groups in burn care.	Yes	Yes, linguistic inaccessibility for burn survivors whose primary language is neither Dutch nor English.	Adoption
								Acceptability
								Appropriateness (+)
								Feasibility
								Fidelity
								Costs
								Penetration (+)
								Sustainability
								Patient outcomes
								Service outcomes
Adapted the comprehensive manual for healthcare professionals to the context of Dutch burn aftercare	Format and usability redesign	IDG, healthcare professionals; burn care decision-makers; original intervention developers	Burn survivors, healthcare professionals, and burn care decision-makers	Consistent with core functions	To align the content and format of the manual with Dutch burn aftercare practices and needs, to facilitate consensus-building during its development, and to clarify who does what, and when in burn aftercare	Yes	Yes, limited applicability of the original manual’s content to the specific workflows and terminology in burn aftercare	Adoption (+)
								Acceptability (+)
								Appropriateness (+)
								Feasibility
								Fidelity (+)
								Costs
								Penetration
								Sustainability
								Patient outcomes (+)
								Service outcomes (+)
Developed a visual communication tool “praatplaat” to supplement the manual	Addition of a visual communication tool	IDG, healthcare professionals, burn care decision-makers, original intervention developers, professional designers	Healthcare professionals, and burn care decision-makers	Consistent with core functions	To enhance clarity, accessibility, and usability of the manual by visually summarizing key information, and to support healthcare professionals in understanding who does what, and when in burn aftercare	Yes	Yes, healthcare professionals expressed a need for more accessible and actionable guidance on roles and responsibilities	Adoption (+)
								Acceptability (+)
								Appropriateness (+)
								Feasibility
								Fidelity (+)
								Costs
								Penetration
								Sustainability
								Patient outcomes (+)
								Service outcomes (+)
Reformatted the patient diary into a structured, paper patient booklet	Reformatting and expansion	Patient experts; IDG; healthcare professionals; a professional designer	Burn survivors and healthcare professionals	Consistent with core functions	In response to healthcare professionals’ request to make the intervention more tangible and aligned with their perspectives on self-management roles and responsibilities. Patient experts also emphasized the importance of developing an accessible tool to track progress and document experiences.	Yes	Yes, perceived over-emphasis on the role of healthcare professionals in burn survivor’s self-management behaviour and the inability of burn survivors to keep track of the BreeZe process	Adoption (+)
								Acceptability (+)
								Appropriateness (+)
								Feasibility
								Fidelity
								Costs (-)
								Penetration (+)
								Sustainability
								Patient outcomes (+)
								Service outcomes (+)
Adapted the integrated training program (e-learning + in-person session) to the context of Dutch burn care professionals.	Contextual tailoring	IDG; original intervention developers; the company behind the e-learning; professional actor	Healthcare professionals	Consistent with core functions	To align the integrated training program with the perspectives of healthcare professionals working in Dutch burn aftercare	Yes	Yes, a potential perceived misfit between the training and the clinical practice healthcare professionals have to apply the knowledge	Adoption (+)
								Acceptability (+)
								Appropriateness (+)
								Feasibility
								Fidelity
								Costs
								Penetration
								Sustainability
								Patient outcomes
								Service outcomes
Reformatted the Visual Analogue Scales into a stand-alone, visually accessible tools	Reformatting	IDG; healthcare professionals	Healthcare professionals	Consistent with core functions	To enhance usability and integration into routine burn aftercare	Yes	Yes, to address the potential barrier that the Visual Analogue Scales embedded in the patient booklet alone may not be used	Adoption (+)
								Acceptability
								Appropriateness
								Feasibility
								Fidelity (+)
								Costs
								Penetration
								Sustainability
								Patient outcomes
								Service outcomes
Developed a documentation guide for healthcare professionals to help healthcare professionals	Adding an element	IDG; healthcare professionals	Healthcare professionals	Consistent with core functions	To encourage a continuous, trusting relationship between burn survivors and a consistent healthcare professional, and to provide tools that support intrinsic self-management process alignment	Yes	Yes, to address the potential lack of continuity in goal setting and action planning	Adoption (+)
								Acceptability
								Appropriateness
								Feasibility
								Fidelity (+)
								Costs
								Penetration
								Sustainability
								Patient outcomes
								Service outcomes
Intervention procedures, activities, sequence, and/or processes
Reframed the intervention structure from discrete sessions [53] to overarching phases [54], and embedded it within routine outpatient consultations without extending appointment times	Reframing of procedural structure in line with recent changes made by the original developers	IDG; healthcare professionals; burn care decision-makers	Burn survivors; healthcare professionals	Consistent with core functions	To align with updated ZENN intervention conceptualization, avoid adding extra workload for healthcare professionals in the BreeZe intervention, and accommodate the differences across the three Dutch burn centres in what constitutes “aftercare”	Yes	Yes, lack of sustained funding and impracticality of scheduling separate or prolonged sessions in routine outpatient care	Adoption (-)
								Acceptability (-)
								Appropriateness
								Feasibility (-)
								Fidelity (-)
								Costs
								Penetration
								Sustainability (+)
								Patient outcomes
								Service outcomes (+)
Adapted the patient selection criteria and timing of intervention initiation to fit diverse patient trajectories in burn care (with or without admission)	Adjustment of eligibility criteria and timing of delivery	IDG; healthcare professionals	Burn survivors; healthcare professionals	Consistent with core functions	To allow adaptations based on the burn survivor’s readiness to change, emphasize a structured yet flexible approach tailored to individual needs of burn survivors, and accommodate the differences across the three Dutch burn centres in what constitutes “aftercare”	Yes	Yes, the variability in patient trajectories within burn care made the original timing and selection criteria impractical	Adoption (+)
								Acceptability (+)
								Appropriateness (+)
								Feasibility
								Fidelity (+)
								Costs
								Penetration (+)
								Sustainability (+)
								Patient outcomes
								Service outcomes (+)
Introduction of Phase 0 for burn survivors who have been admitted, focusing on initial engagement and transition from inpatient care to home	Adding an element	IDG; healthcare professionals; patient experts	Burn survivors who have been admitted to a burn centre	Augmentation in line with the new core function (case-management)	To create opportunities to initiate self-management support around the time of discharge	Yes	Yes, the barrier was that without this early phase, there may be insufficient foundation for a strong collaborative relationship.	Adoption
								Acceptability
								Appropriateness (+)
								Feasibility (-)
								Fidelity
								Costs
								Penetration (+)
								Sustainability
								Patient outcomes (+)
								Service outcomes
Intervention delivery
The intervention delivery, which was originally designed to be provided by nurse practitioners, was adapted to include burn aftercare nurses, burn nurse practitioners, and burn physicians.	Contextual tailoring	IDG; healthcare professionals	Healthcare professionals	Augmentation broadening the scope of healthcare professionals	To ensure the intervention can be implemented consistently across different burn centres, where healthcare roles and responsibilities vary. By widening the scope, the intervention is able to accommodate the differences across the three Dutch burn centres in professionals working in burn aftercare	Yes	Yes, the barrier was that some burn centres do not have nurse practitioners.	Adoption (+)
								Acceptability (+)
								Appropriateness (+)
								Feasibility (+)
								Fidelity (+)
								Costs
								Penetration
								Sustainability (+)
								Patient outcomes
								Service outcomes (+)

A/A = adaptation/augmentation; IDG = intervention development group consisting of four members from the burn care research team with diverse expertise, two patient experts, a burn physician, and two burn nurse practitioners; ^a = the MADI also includes the construct “When did the adaptation occur?” which was left out of the table as all adaptations and augmentations described here have occurred during phase 4 and 5; ^b = the outcomes described here are described in detail by Proctor et al. Adm Policy Ment Health. 2011 Mar;38(2): 65–76. doi: 10.1007/s10488-010-0319-7; ^c = for each outcome the expected intended and unintended impact has been considered in terms of (+) positive, and (-) negative.

Results

The result of our structured, multistage development process is a self-management support program for burn survivors, named BreeZe (Brandwonden en Zelfmanagement/Burns and self-management). The reporting of the intervention below is structured according to the Template for Intervention Description and Replication (TIDieR) checklist [57]. Additionally, the program theory underlying the BreeZe intervention is presented in Additional File 5.

Intervention goal

The BreeZe self-management support intervention takes a holistic, patient-centred approach, addressing the medical, emotional, and social aspects of self-management. It aims to strengthen burn survivors’ self-efficacy and intrinsic motivation by helping them identify challenges after discharge from the burn centre, explore solutions, and develop personalized action plans. The intervention aligns with the full range of fit indicators presented in Table 2. BreeZe is a comprehensive, multicomponent intervention that offers a structured yet flexible approach, includes face-to-face guidance, and can be adapted according to the burn survivor’s readiness to change. It incorporates goal-setting and action planning, emphasizes fostering continuous, trusting relationships between burn survivors and healthcare professionals, and actively promotes motivation and self-efficacy as well as the involvement of informal caregivers.

Intervention core functions

The following core functions are drawn directly from the BreeZe intervention outlined above: Holistic Care Approach [58], Goal Setting and Action Planning [59], Solution-Focused Brief Therapy [52], Motivational Interviewing [51], Case Management [60], and acknowledging and involving informal caregivers.

Intervention delivery (who, how, where, when, and how much)

The BreeZe intervention is designed primarily for burn survivors whose wound healing time exceeds at least 14 days, as the IDG assumed these burn survivors experience more significant long-term consequences of the burn injury. BreeZe is delivered by trained healthcare professionals who are already positioned as key contacts for burn survivors throughout their recovery, including dedicated burn aftercare nurses, burn nurse practitioners, and burn physicians when no nurse or nurse practitioners are available. To ensure effective delivery, healthcare professionals offering BreeZe must complete an integrated training program. For each burn survivor, one of these healthcare professionals will act as a “case manager”. A case manager coordinates the post-discharge aftercare process and serves as the primary point of contact, guiding the burn survivor and his/her caregiver(s) through the various phases of recovery. The BreeZe intervention is implemented within the (outpatient) clinical treatment trajectory, either starting during the burn survivor’s hospitalization (Phase 0) or shortly after discharge (Phase 1). For burn survivors starting in an outpatient trajectory, Phase 1 starts 7 to 14 days after their injury or discharge.

Intervention materials

Various intervention materials have been developed to support the goals of the BreeZe self-management support intervention. For burn survivors, these include:

• Self-Management Web [33] – A visual communication tool designed to help burn survivors and healthcare professionals assess and discuss various life domains in a structured way. It provides a standardized overview of 14 key areas, supporting a holistic approach to self-management while promoting intrinsic motivation by allowing burn survivors to prioritize their focus. This tool facilitates shared decision-making and ensures that support aligns with individual needs. This tool is available in Dutch, English, German, Polish, and Arabic.

• Patient booklet – A structured booklet that guides burn survivors through the different phases of self-management: identifying challenges and needs, exploring solutions, and developing personalized action plans. Designed by burn survivors, it serves as a reflective tool to track progress, document experiences, and support ongoing self-management efforts.

• Visual analogue scales (VAS) scales – These VAS scales are tools used to assess key aspects of self-management, including intrinsic motivation and goal progression. The scales allow burn survivors to visually track their progress over time, providing both the healthcare professionals and the burn survivors with a clear representation of changes in key areas. This makes it easier to identify challenges and facilitates motivational interviewing and positive reinforcement.

For healthcare professionals these include

• Integrated Training Program – This training, originally developed for the ZENN Intervention [54] and later adapted to the burn care context, consists of two complementary components. Burn care professionals first complete an e-learning module covering the theoretical background, key concepts, and intervention steps. This is followed by an in-person session, led by one of the original developers (EKM) together with a professional training actor (MvB), where participants practice communication skills in realistic scenarios. Additionally, a booster session is organized approximately 4–8 weeks after the in-person training to address questions from clinical experience and to further practice skills. The training follows the CRe-DEPTH criteria [61] and is detailed in Additional File 6.

• Comprehensive manual for healthcare professionals – A manual that covers all aspects of the BreeZe intervention, including the intervention goal, underlying rationale, intervention core functions, and its alignment with other developments in burn care. It also provides practical suggestions for engaging in everyday conversations with burn survivors, offering guidance on how to effectively support them throughout their self-management journey.

• Visual communication tool (“praatplaat”/”poster that elicits talking”) – A visually designed summary that complements the comprehensive manual by presenting key information and intervention phases in an accessible and engaging format. The tool clarifies the roles and responsibilities of healthcare professionals within the BreeZe intervention, supporting implementation in practice by helping teams quickly grasp what needs to happen, when, and by whom. See Additional File 7.

• Documentation Guide for Healthcare Professionals – A structured framework for documenting patients’ self-management support progression throughout the outpatient journey in the Electronic Health Record system.

Intervention procedures, activities, sequence, and/or processes

The BreeZe intervention consists of five flexible phases that support burn survivors in building self-management skills after discharge. Each phase is adapted to individual needs and progress (for a visual presentation, see Additional File 7):

• ➢Intervention phase 0: Introduction and Transition to Home (for hospitalized burn survivors only)

  Prepares burn survivors for discharge by building rapport, addressing immediate concerns, and introduces the concept of goal pursuit and setting.

• ➢Intervention phase 1: Assessment (7-14 days post-discharge or post-injury)

  Focuses on understanding the burn survivor’s priorities, challenges, and goals. Key tools like the Self-Management Web and VAS scales are used to gauge desired outcome and current status, intrinsic motivation, and self-efficacy.

• ➢Intervention phase 2: Solidify (around 3 months post-discharge)

  Revisits and refines goals, develops action plans or adjusts if needed, assesses progress, and focuses on reinforcing intrinsic motivation. The healthcare professional ensures that the burn survivor is on track and offers additional guidance to overcome barriers.

• ➢Intervention phase 3: Continuation (around 6 months post-discharge)

  Ongoing review of progress and implementation of action plans. Motivation and self-efficacy are reassessed using VAS scales to support long-term engagement.

• ➢Intervention phase 4: Monitor (around 12 months post-discharge)

  Focuses on maintaining and expanding self-management skills, addressing setback prevention, planning for long-term independence, and generalising self-management skills to other situations.

Each phase of the intervention is integrated into routine care and takes approximately 15 to 30 minutes, depending on the type of routine care consultation. Phases may be spread over multiple sessions, depending on the burn survivor’s recovery and coping process. A minimum of two weeks between phases is recommended to allow time for implementing action plans. During each phase, professionals are also prompted to ask about the presence of an informal caregiver, and whether they should be involved in the BreeZe process.

Discussion

This report outlines the development of a self-management support intervention for burn survivors following discharge from burn centres. The primary aim was to develop a self-management support intervention for burn survivors while ensuring transparency in the developmental process to facilitate future replication, scaling, learning, and broader implementation. The developmental process incorporated a collaborative, multi-stakeholder approach, integrating scientific evidence, theory, and expert feedback. This process resulted in BreeZe – a comprehensive, evidence-based, and theoretically grounded intervention designed to meet the unique needs of burn survivors and tailored to the context of Dutch burn aftercare. BreeZe includes key core functions such as a Holistic Care Approach [58], Goal Setting and Action Planning [59], Solution-Focused Brief Therapy [52], Motivational Interviewing [51], and Case Management [60], supported by materials like the Self-Management Web [33], a patient booklet, an integrated training program, and a comprehensive manual for healthcare professionals. The developmental process, spanning 32 months, was thorough and carefully considered, requiring us to balance the diverse perspectives of stakeholders with scientific evidence and theory, ultimately resulting in an intervention that holds promise for improving burn care and increasing the likelihood of successful adoption and implementation.

Use of theories, models and frameworks

The development of the BreeZe intervention was informed by several complementary frameworks [24–27] that can be categorized as “process models” – a term used by Nilsen [62] to describe theoretical approaches that support the translation of research into practice through clearly defined, phased steps. These helped structure and guide our process, offering clarity and flexibility – essential in balancing scientific evidence, theory, and diverse stakeholder perspectives throughout a complex and lengthy development process requiring iteration, participation, and responsiveness to contextual factors. However, while these models were valuable in guiding how to develop and adapt the intervention, they paid less attention to why it might work—the mechanisms of change. To address this, we drew on a wide range of behavioural theories [50, 63–68] inherited from the original ZENN intervention [54]. These theories informed both the original and adapted matrices of change objectives and helped articulate a preliminary program theory for BreeZe (Additional File 5) that provides a plausible explanation about how BreeZe is supposed to function and achieve its objectives.

Looking back, our layered approach – combining structured process guidance with theoretical depth – proved both valuable and demanding. While the use of multiple theories, models and frameworks contributed to methodological rigour, it also required continuous reflection on when and how each of them was applicable, and how they related to one another. This appeared to be particularly complex in a participatory context. Working collaboratively using participatory methodologies meant investing in the capacity and capability of co-creators to engage meaningfully with theoretical concepts, which requires upskilling efforts. Moreover, translating abstract theories into practical, actionable steps demanded sustained effort from the project lead, who had to mediate between academic expectations and real-world constraints. A clear example of these dynamics was our consideration of more closely adhering to the Intervention Mapping (IM) approach [55], which had underpinned the development of the original ZENN intervention. While IM is a well-established, systematic approach to planning and developing health promotion interventions, its focus on new intervention development overlapped with other process models already guiding our approach [24–27], offering limited added value to the adaptation-focused BreeZe process. Importantly, the decision not to shift to an IM-based approach was made collectively. To assess whether IM was relevant and valuable in our specific phase, context, and goals, all co-creators had to engage with the underlying methodological assumptions and compare them to the demands of the adaptation process. This required grappling with complex concepts such as intervention logic models, and the distinction between adaptation and de novo development. The process underscored the importance of upskilling, as highlighted in previous research, to enable meaningful and informed participation [69].

Use of co-creation

The co-creative approach played a central role in the development of the BreeZe intervention and brought several key benefits. By actively involving burn survivors, their informal caregivers, burn care professionals, and burn care decision-makers, we were able to develop an intervention that we expect to be closely aligned with their perspectives and well-fitted to the context in which it will be implemented. We expect that, as suggested by Hawkins and colleagues [25], this inclusive approach has fostered a sense of ownership and buy-in across the three burn centres. Involving a broad range of stakeholders also facilitated the integration of experiential and scientific knowledge – an important function of co-creation highlighted by Leask and colleagues [69]. For example, input from patient experts and burn care professionals was essential in determining the optimal timing of key elements of the BreeZe intervention, such as when to introduce goal setting and when to move to action planning within the patient journey. Moreover, our co-creative process enabled stakeholders to influence the changes the intervention aims to bring about, to prepare for those changes, and to ensure that the intervention aligned with what they themselves found valuable - three conditions identified by Nilsen and colleagues [70] as critical for successful organizational change.

Despite its many benefits, the co-creative development process also posed several challenges. One key difficulty was balancing the diverse priorities, routines, and cultural values of the three burn centres and their staff, which sometimes led to tension between local practices. Another challenge lay in managing the breadth of participation. While stage 1 tools such as stakeholder mapping and the power-interest grid helped identify relevant stakeholders, ensuring the right level of involvement throughout the development process proved complex. Roles and tasks evolved iteratively and required continuous alignment as the project progressed. To manage this, we adopted a layered engagement strategy: a core group of stakeholders (the IDG) participated intensively in consensus-building workshops, while others were regularly informed, consulted, or asked for advice – reflecting the three levels of participation (Information, Consultation, and Advice). However, navigating competing agendas, time constraints, and occasional ambiguity around decision-making authority, required ongoing effort. In hindsight, integrating a tool like the Value Proposition Canvas might have further streamlined this process [27]. By clarifying the distinct value that each stakeholder group places on the new intervention early on, we could have facilitated more focused and efficient collaboration. These challenges resonate with those found in other studies [25, 71], and underline the reality that while co-creation enhances contextual fit and alignment with stakeholder perspectives, it also demands sustained coordination, reflexivity, and flexibility throughout the process.

Future activities

As noted by Skivingston and colleagues [20], developing a complex intervention does not end once the content has been agreed upon. Instead, refinement continues as insights accumulate, based on early implementation experiences and how the intervention interacts with different real-world contexts. We expect this to also be true for the BreeZe intervention. While its core components have now been defined, we anticipate that further tailoring together with our stakeholders, may be needed as we move into the evaluation phase, especially given the diversity in how burn aftercare is organized and delivered across centres and in burn survivors’ patient journeys. This may include, for example, implementation strategies to better support local adoption in practice.

As we move forward, the program theory of BreeZe will require further elaboration [20]. While we have established the change objectives, determinants, and performance objectives that underpin the intervention, the precise outcome measures remain under development. This includes determining how self-management support and behavior will be defined and measured, establishing appropriate timeframes for measurement, and identifying the patient and service outcomes that should be linked to these processes. Additionally, it is crucial to define the implementation outcomes that underlie the adaptations highlighted in Table 3. Unlike the approach of Maindal and colleagues [71], who developed a detailed core outcome set early in their intervention development, we have opted to defer this step to the next phase wherein we will conduct a systematic evaluation of its effectiveness after implementation.

In addition to continuous refinement of the intervention and program theory, economic considerations will also be essential in the next phase [20]. As outlined in our program theory (Additional File 5) and introduction paragraph, assessing the intervention’s effect on burn care service utilization and sustainability will be critical to determine its value from a broader point of view [72, 73]. Engagement with economic experts will ensure that these considerations are integrated, allowing us to evaluate the intervention’s cost-effectiveness after implementation.

Conclusion

The development of the BreeZe intervention has been a rigorous, multi-faceted process, integrating scientific evidence, theoretical frameworks, and input from a diverse group of stakeholders, including burn survivors, healthcare professionals, and burn care decision-makers. By addressing the complex physical, psychological, and social needs of individuals recovering from burns, BreeZe offers a holistic, person-centred approach to self-management support after discharge from burn centres. Its core components – such as goal setting, action planning, and case management – are designed to foster sustainable self-management behaviours and contribute to more effective, collaborative burn care. As the intervention moves into the implementation and evaluation phase, continued refinement will be crucial to ensure it remains responsive to evolving needs and changing real-world contexts. This systematic development process not only lays the groundwork for successful adoption, scaling, and replication of this particular intervention, but also contributes to the broader evidence base on developing and adapting complex interventions beyond the field of burn care.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Abbreviations

BreeZe

Brandwonden en Zelfmanagement (burns and self-management)

CRe-DEPTH criteria

Criteria for Reporting Education, Development, and Provider Evaluation

DBR R3

Dutch Burn Registry

GUIDED

GUIDance for the rEporting of intervention

IDG

Intervention Development Group

IM

Intervention Mapping

MADI

Model for Adaptation Design and Impact

MRC

Medical Research Council

SFBT

Solution-Focused Brief Therapy

TIDieR

Template for Intervention Development and Replication

VAS

Visual Analogue Scales

ZENN

ZElfmanagement Na Niertransplantatie (self-management after kidney transplantation)

Author contributions

MKN and SMHJSJ conceived the overall study concept. SJGG led the coordination of the project and maintained oversight, supported by SLB. The design of the various stages of the development process was a collaborative effort by SJGG, SLB, ASN, IV, SMHJSJ, and MKN. Contributions to the creation of the BreeZe intervention – were made by SJGG, SLB, ASN, GB, IV, RB, CKvdS, DvU, RV, ABvdB, SMHJSJ, and MKN. EKM contributed to the project as the original developer of the ZENN intervention. SJGG drafted the initial version of the manuscript, with substantial input from SLB, ASN, CKvdS, EB, SMHJSJ, and MKN. All authors reviewed the manuscript, provided critical feedback, and approved the final version for publication.

Funding

This work was supported by the Netherlands Organization for Health Research and Development (ZonMW) (10070022010003). ZonMW did not play a role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review or approval of the manuscript; and decision to submit the manuscript for publication.

Data availability

The data generated and analysed during the current study are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

All study procedures were conducted in accordance with relevant guidelines and regulations including the Declaration of Helsinki. Ethical approval was obtained where required (e.g., interview studies), with approval granted by the Ethics Committee of the Martini Hospital [2022–092; 2022–093; 2023–008] and re-approved locally at the Maasstad Hospital and Red Cross Hospital. Participants involved in relevant stages of the study provided written informed consent prior to participation.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.