The Role of Social Work in Supporting Individuals with Epidermolysis Bullosa and Their Families: Community Social Services as the Coordinating Hub

Abstract

Epidermolysis Bullosa is a group of rare genodermatoses characterized by extreme mucocutaneous fragility, significantly affecting the quality of life of those who live with the condition and their families, thereby making integrated and coordinated social work intervention with other health and social care professionals essential. This qualitative descriptive study examines social work practice with individuals with Epidermolysis Bullosa through online open-ended surveys administered to twenty professionals, analyzed using a reflexive thematic approach. The findings reveal key barriers, including the lack of specialized training, the absence of standardized protocols, and administrative complexity, as well as the need to address intersectional factors that exacerbate socioeconomic vulnerability. Despite these challenges, social work intervention contributes to enhancing family autonomy, improving caregiver well-being, and promoting social, educational, and occupational inclusion. The study highlights the importance of strengthening such interventions through interinstitutional coordination, the development of structured protocols, and the central role of community social services. In conclusion, advancing specialized training and consolidating coordination structures may significantly improve the quality of care and the well-being of affected individuals and their families.

1. Introduction

1.1. Background

Rare diseases, such as Epidermolysis Bullosa (EB), represent a significant challenge for welfare systems due to their low prevalence, high clinical complexity, and profound impact on the family environment (Posada et al. 2008). Affected individuals and their families require coordinated interventions tailored to needs that extend beyond strictly healthcare concerns (Prodinger et al. 2019). In this context, social work emerges as a key discipline, given its capacity to provide comprehensive responses in situations of high complexity and socioeconomic vulnerability (Butterworth et al. 2019).

EB constitutes a heterogeneous group of rare genodermatoses characterized by extreme mucocutaneous fragility (Bardhan et al. 2020), with clinical manifestations ranging from localized blisters to severe extracutaneous complications (Maseda et al. 2021). Among the latter, squamous cell carcinoma remains the leading cause of mortality (Fine and Hintner 2009). According to the most recent epidemiological data, the estimated prevalence is 11.1 per million inhabitants, with an incidence of 19.6 per million live births (Bardhan et al. 2020). Its classification has undergone recurrent revisions, with the most current identifying four types: Dystrophic EB, Junctional EB, EB Simplex and Kindler EB (Has et al. 2020). In the absence of a cure, health and social care primarily focus on wound management, pain relief, and the prevention of complications (Has et al. 2021). However, EB extends far beyond the boundaries of a strictly dermatological condition, constituting a chronic, multidimensional, and high-impact disorder that affects the entire family unit. The continuous demands associated with care directly impact the quality of life of individuals with EB and their families (Hübl et al. 2026; Linertová et al. 2026; Pilo et al. 2026; Salamon et al. 2025), frequently exceeding families’ coping capacities. The impact on the family environment becomes evident from birth onwards and is often profoundly detrimental, affecting daily routines and social and marital relationships, and generating emotional distress that contributes to physical and psychosocial deterioration in both parents (Martínez-Ripoll et al. 2024).

1.2. Literature Review

Given the complexity and multidimensional impact of EB, recent research has emphasized the importance of assessing and addressing, from an integrated and coordinated perspective, the health and social care needs of individuals with EB and their families (Martínez-Ripoll et al. 2026). In line with this, international consensus guidelines recommend an interdisciplinary approach that incorporates dermatology, pediatrics, nursing, psychology, and social work throughout all stages of care (Laimer et al. 2017; Martin et al. 2019; Popenhagen et al. 2023).

While some disciplines benefit from well-defined protocols (Chan et al. 2019; Marchili et al. 2022; Weisman et al. 2021), there remains a notable gap regarding the specific role of social work and its contribution in the context of EB. Although previous scientific evidence has documented the significant social and emotional impacts associated with the condition, as well as the value of social work intervention (Butterworth et al. 2019; Martínez-Ripoll et al. 2026), there is a scarcity of studies examining how these professionals identify and address such needs, which strategies they implement, and the obstacles they encounter in daily practice (Dures et al. 2010; Linertová et al. 2026).

Nevertheless, despite the fact that previous research has documented both the social and emotional consequences associated with EB and the value of social work intervention (Butterworth et al. 2019; Martínez-Ripoll et al. 2026), studies examining how social work professionals identify and address these needs in everyday practice remain scarce (Pilo et al. 2026). In particular, limited attention has been paid to the specific strategies they implement and the structural barriers they encounter in their professional activity (Dures et al. 2011). Unlike other healthcare disciplines involved in EB care, social work currently lacks standardized intervention protocols to guide professional practice, hindering the development of structured, coherent, and needs-centered interventions for individuals with EB and their families (Martínez-Ripoll et al. 2026).

1.3. Study Objective and Research Question

Accordingly, this study aims to analyze professional social work practice in the care of individuals with EB and their families in Spain across multiple service settings. Specifically, the study seeks to generate knowledge that may inform the development of structured intervention protocols, assessment and diagnostic tools, and person-centered care plans capable of strengthening social work practice, enhancing interprofessional coordination, and ensuring a comprehensive, coherent, and needs-centered response for individuals with EB and their families.

The study was guided by the following research question: How do social work professionals working with individuals with EB and their families in Spain identify and address existing needs, what barriers and intervention strategies characterize their professional practice, and what role do Community Social Services play within the broader network of health and social care coordination?

By addressing these questions, this study provides insight into social work intervention in the context of EB across diverse care settings in Spain, contributing to the advancement of coordinated, needs-centered, and evidence-informed models of professional practice.

2. Materials and Methods

2.1. Research Design

A qualitative descriptive design was employed, grounded in an interpretative and constructivist approach, as this framework is particularly suitable for understanding how social work interventions are carried out with individuals with EB and their families. The study aimed to identify structural gaps, challenges, needs, and barriers within professional practice. Such insights are essential for identifying best practices, evaluating areas for improvement, informing the development of future intervention strategies, and supporting proposals aimed at strengthening interdisciplinary and interinstitutional coordination, ultimately enhancing the effectiveness of social work interventions and the quality of life of affected individuals.

This approach is consistent with previous EB research that has employed qualitative methodologies to capture the experiential complexity of a low-prevalence condition with a profound psychosocial impact, in which quantitative data alone are insufficient to fully understand the lived experiences of professionals and families (Hübl et al. 2026; Pilo et al. 2026).

Given the territorial dispersion of individuals with EB and the heterogeneity of care settings across Spain, online open-ended surveys were selected as the method of data collection.

2.2. Participants, Procedure and Instrument

Participants were recruited through purposive sampling in collaboration with DEBRA Spain, a national patient association dedicated to improving the quality of life of individuals with EB and their families. Purposive sampling was considered the most appropriate strategy, given the low prevalence of EB and the limited number of social work professionals with direct experience in this field. Only social work professionals from different areas of practice who were currently providing direct care to individuals with EB and their families were included in the study. Most participants attended cases of Recessive Dystrophic EB (RDEB, n = 12), followed by Junctional EB (JEB, n = 6) and EB Simplex (EBS, n = 2).

The final sample consisted of twenty social work professionals from diverse intervention settings: seven from Community Social Services (CSS), five from Primary Health Care (PHC), four from third-sector social action organizations (TSO), two from Early Intervention Programs (EIP), and two from Hospital Care (HC). This diversity provided a broad and representative perspective on professional practice in the context of EB, contributing to the credibility and transferability of the findings by incorporating experiences from multiple institutional and territorial care settings, as shown in

Table 1. Sociodemographic characteristics of the sample (N = 20 participants.

Sample Size	N = 20	%
Age (mean, range)	43.8 years (range: 33–53 years)
Male	4	20
Female	16	80
Professional setting
Community Social Services	7	35
Early Intervention	2	10
Primary Health Care	5	25
Third Sector Organizations	4	20
Hospital	2	10
Type of Epidermolysis Bullosa
Recessive Dystrophic EB (RDEB)	12	60
Junctional EB (JEB)	6	30
EB Simplex (EBS)	2	10
Province
Barcelona	8	40
Madrid	4	20
Almería	1	5
Granada	1	5
Cáceres	1	5
Huesca	1	5
Málaga	3	15
Jaén	1	5

.

Invitations to participate were sent via institutional email to thirty-five social work professionals from diverse care settings and regions of Spain who provided direct care to individuals with EB. Ultimately, twenty professionals responded, representing a participation rate of 57%. All participants provided informed consent, and confidentiality and anonymity were maintained throughout the data collection process. The study was approved by the Human Research Ethics Committee (CEIH) of the University of Jaén (code DIC.22/2.TES), and data confidentiality was ensured through anonymization and coding of responses.

The development of the online open-ended surveys was guided by the questionnaire produced by the Spanish Federation of Rare Diseases (FEDER), “Annex III: Definition of the Roles of the Social Worker in the Field of Rare or Infrequent Diseases” (Carrión and Mayoral 2017), and the ProQOL scale (Stamm 2010), in order to conceptually orient the content and ensure consistency with previously validated frameworks. The questionnaire comprised eighteen open-ended questions organized into four thematic areas: challenges and difficulties in the care of individuals with EB and their families; intervention strategies and interinstitutional collaboration; perceptions of the impact of social work on the quality of life of individuals and families; and personal effects arising from professional practice. One example of an item included in the questionnaire was: “What are the main challenges you encounter in providing care to individuals with EB within your professional scope?”

2.3. Data Analysis

The collected data underwent a rigorous six-phase reflexive thematic analysis (Braun and Clarke 2021). Information from the online open-ended surveys was examined in depth, with thorough reviews conducted to ensure accuracy and completeness. Additionally, the research team incorporated personal reflections through a research diary (memo), documenting observations, decisions, and protocol modifications to enhance process reliability (Johnson et al. 2020; Tong et al. 2007).

Data saturation was considered achieved with the participation of twenty professionals, as no substantially new themes or perspectives emerged during the final stages of analysis.

From this review, common patterns were identified and codes assigned for data categorization, organizing the findings into three main thematic areas:

• Challenges in social work practice with individuals with EB and their families.
• Impacts of social work intervention on families and professional practice.
• Intervention strategies and interinstitutional coordination: the role of Community Social Services.

Data transcription and content analysis were conducted using the qualitative analysis software ATLAS.ti (version 25.0.1). To ensure quality and rigor, the study adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ). All information was anonymized and coded in accordance with informed consent. Each record included two elements:

• Professional scope of the participant (CSS, PHC, TSO, EIP, HC).
• Type of EB treated (RDEB, JEB, EBS).

Both elements were separated by a forward slash and followed by a number in parentheses corresponding to the identification code assigned to each participant.

3. Results

3.1. Challenges in Social Work Practice with Individuals with Epidermolysis Bullosa and Their Families

Social work professionals described multiple challenges that affect the quality of intervention.

Table 2. Challenges in social work practice with individuals with Epidermolysis Bullosa and their families.

Challenge	Description	Consequences
Lack of training and protocols	Absence of specialized training EB; lack of standardized intervention guidelines	Professional insecurity; limited decision-making; risk of inconsistent interventions; lack of coordination with other services
Administrative barriers and lack of resources	Complex and lengthy bureaucratic procedures; shortage of human and material resources; additional difficulties in migrant families or those with language barriers	Delays in care; prioritization of administrative tasks over direct interventions; reduced quality of support
Family socioeconomic vulnerability	Poverty and social exclusion; instability and limitations in housing access	Emergency interventions; increased complexity in planning support; need for multidisciplinary coordination
Emotional overload and family dynamics	Overprotection of the person with EB; difficulty integrating the disease into family life	Management of emotional aspects; establishment of user-professional attachment bonds

provides a structured summary of these difficulties.

A lack of specialized training in EB, coupled with the absence of standardized procedures or clear protocols, generates uncertainty and hesitation in decision-making, delaying the planning and execution of professional actions. This knowledge gap may lead to the transmission of contradictory information to families, hindering their understanding of the disease, the necessary care, and the resources available.

“Most professionals are unfamiliar with the disease, which creates insecurity in practice and delays decision-making.” HC/RDEB (2)

Administrative and bureaucratic barriers constitute another critical level of difficulty. Several participants noted that procedures related to dependency, disability, or financial assistance are lengthy, unclear, and emotionally exhausting for already overburdened families.

“Many families prefer not to request any resources due to waiting times and the complexity of the procedures.” CSS/EBS (19)

“For families from abroad, additional documents and language barriers generate even greater delays, adding to socioeconomic vulnerability that is often significant in these contexts.” CSS/RDEB (5)

Challenges also emerge from the family context. Limited availability of resources in many households severely affects the planning and continuity of care, restricting the type of support that can be offered. This vulnerability is heightened in contexts of social exclusion or migration, where economic instability, housing difficulties, and lack of support networks are evident. Consequently, families must constantly adapt to changing circumstances, while social work professionals must provide flexible support to compensate for these institutional barriers.

“The families we support often live in situations of structural poverty, requiring more intensive and urgent interventions. The problem is institutional, as we do not have adequate resources.” PHC/JEB (13)

“We work with many families who, in addition to coping with the disease, face economic precarity and difficulty accessing basic services. Care often focuses on addressing urgent needs.” CSS/JEB (14)

Additionally, caregiver overprotection, initial difficulty accepting the diagnosis, and the complexity of integrating the disease into family routines are frequent barriers that can influence the implementation of intervention strategies.

“Some parents limit their children’s participation out of fear of harm, negatively impacting their social and emotional development.” TSO/RDEB (12)

These challenges reflect institutional, social, and contextual barriers that influence the planning and execution of social work interventions. Accordingly, professional intervention must be flexible and tailored to the specific needs of each individual with EB, while simultaneously facilitating effective social work practice.

3.2. Impacts of Social Work Intervention on Families and Professional Practice

The impact of social work interventions with individuals with EB can and should be analyzed from a dual perspective. On one hand, it is necessary to consider the effects of such interventions on the individuals with EB and their families, as shown in

Table 3. Impact of social work interventions on individuals with EB and their families.

Impact	Description
Family autonomy	Enhances families’ ability to manage the disease independently, make informed decisions, and cope with complex situations.
Caregiver emotional well-being	Reduces isolation, overload, and vulnerability by providing support, containment, and emotional security.
Social, educational, and occupational inclusion	Promotes full participation in community, educational, and work-related activities, fostering holistic development and social integration.

.

On the other hand, it is also important to examine the impact of this process on the professionals themselves, as shown in

Table 4. Personal impact on social work professionals.

Professionals	Impact
Emotional impact	Initially, interventions may generate frustration, anxiety, or feelings of inadequacy, especially in contexts with limited resources or institutional barriers.
Professional growth and development	Over time, interventions foster the acquisition of new competencies, strengthen coordination and networking skills, and enhance mediation and decision-making abilities.

.

Analyzing both dimensions allows for a more comprehensive understanding of the outcomes and dynamics of social work interventions, as well as the identification of factors that enhance the effectiveness of professional actions and the sustainability of professional practice.

One of the most frequently reported and positive outcomes of social work intervention with individuals with EB and their families is the enhancement of family autonomy in disease management.

“Families who were initially overwhelmed were able to manage the condition independently thanks to therapeutic education and effective coordination.” HC/RDEB (9)

This effect reflects not only the transfer of knowledge and skills but also the strengthening of families’ coping capacity, perceived competence, and self-determination to make informed decisions and manage complex situations independently.

Additionally, professionals highlighted significant improvements in caregiver emotional well-being as a result of social work intervention. The intervention helps reduce feelings of isolation, overload, and vulnerability, providing a supportive and containing space, and demonstrating the key role of social work as a mediator and facilitator between families and care systems.

“When I first engaged with the family, there was considerable distrust toward services. Gradually, by accompanying them, explaining processes, and facilitating communication with different professionals, we helped them feel heard and understood.” CSS/JEB (16)

Another relevant impact is observed in the social, educational, and occupational inclusion of individuals with EB. Coordination with various institutions enables full participation in community and educational activities, fostering holistic development and ensuring that interventions extend beyond healthcare provision.

“Seeing the child engage in recreational activities and participate like any other child has been a very significant step for her and her family.” CSS/RDEB (7)

Social work intervention should contribute to social inclusion and the development of autonomy and life skills, consolidating the role of social work as an integrative and coordinating axis of support in complex contexts.

At the professional level, working with individuals with EB and their families also carries significant emotional implications. Early stages of intervention may provoke frustration, anxiety, or feelings of inadequacy, especially in contexts with limited resources or where institutional barriers hinder effective interventions. This highlights the need for ongoing supervision, mentoring, and professional training to allow practitioners to manage complex cases with confidence and efficacy.

“The early moments were emotionally challenging, but with adequate information and training, everything becomes more manageable.” EIP/RDEB (8)

Despite these initial challenges, most professionals reported experiences of growth and professional development arising from engagement with highly complex situations. Collaboration with specialized entities such as DEBRA Spain, participation in interdisciplinary teams, and management of cases with multiple needs foster the acquisition of new skills, enhance decision-making capacity, and strengthen coordination and mediation competencies.

“When you see the child’s progress and the family’s peace of mind, you understand the real value of your intervention.” PHC/RDEB (1)

3.3. Intervention Strategies and Interinstitutional Coordination: The Role of Community Social Services

Despite the previously identified challenges, professionals agreed that effective intervention largely depends on proper interprofessional and interinstitutional coordination. Collaboration among healthcare teams, social services, educational institutions, and patient associations, such as DEBRA Spain, is a key element to ensure comprehensive, coherent, and individually tailored care. This collaborative work facilitates efficient information sharing, the establishment of common objectives, and coordinated decision-making, promoting continuity of care, avoiding duplication, and ensuring that interventions address all dimensions of patient well-being holistically.

“Coordination with dermatology, pediatrics, nursing, and psychology is essential to address all dimensions of the case.” PHC/JEB (15)

“When communication between DEBRA Spain, social services, and hospital care flows smoothly, cases progress more effectively and families feel better supported.” PHC/RDEB (4)

Participants emphasized a dual approach in their interventions, combining emotional support with practical guidance and accompaniment. The latter may include household organization, time management, or coordination with educational and recreational settings. These strategies demonstrate that social work practice extends beyond resource management to address psychosocial, educational, and inclusion dimensions, contributing to a community-centered, needs-focused approach for individuals with EB and their families.

“We do not just provide assistance; we also help organize routines and provide emotional support to the family. That makes a difference in their daily lives.” CSS/RDEB (6)

In this regard, participants’ perceptions indicated that professionals from Community Social Services occupy a strategic position in the care of individuals with EB and their families (see Figure 1).

Their proximity to the community, comprehensive understanding of family circumstances, and ability to simultaneously address social, economic, educational, and health dimensions position Community Social Services as a central coordination point among the various systems involved.

“Social services have the best understanding of the family’s overall reality and are able to coordinate referrals coherently.” PHC/RDEB (11)

“Having a clear point of reference improves continuity of care and reduces confusion for families.” TSO/RDEB (3)

Strengthening and promoting coordination through Community Social Services could optimize the coherence, continuity, and effectiveness of social work interventions for individuals with EB and their families, while simultaneously facilitating professional practice and intervention in this context.

4. Discussion

Social work interventions for individuals with EB and their families constitute a highly complex field of practice, shaped by multiple institutional, educational, and intrafamilial barriers that directly affect the quality and continuity of care. The findings of this study suggest that the limited availability of specialized training in EB among social work professionals represents a key factor constraining the quality of intervention and generating insecurity and uncertainty in professional decision-making. In contrast to other disciplines involved in EB care, such as occupational therapy, pain management, and physiotherapy, where well-established clinical guidelines and intervention frameworks are available (Chan et al. 2019; Goldschneider et al. 2014; Weisman et al. 2021), social work professionals continue to lack standardized protocols capable of guiding practice in a structured and coordinated manner (Dures et al. 2011). This gap in professional training and procedural guidance highlights the need to strengthen specialized education and develop specific intervention protocols that support integrated, coherent, and needs-centered responses for individuals with EB and their families (Hübl et al. 2026; Linertová et al. 2026; Martínez-Ripoll et al. 2026).

Although no previous studies have specifically examined the impact of social work intervention protocols in the context of EB, evidence derived from interdisciplinary care guidelines and reference-center models provides a relevant basis for supporting this argument. International consensus guidelines for EB care, including those focused on psychosocial support (Martin et al. 2019), palliative and end-of-life care (Popenhagen et al. 2023), and the interdisciplinary framework developed by EB House Austria (Laimer et al. 2017; Prodinger et al. 2019), consistently emphasize that structured and protocol-based coordination among professionals significantly improves continuity, coherence, and quality of care. These models demonstrate that when intervention pathways are clearly defined and shared across disciplines, families experience fewer gaps in support, professionals act with greater clarity and confidence, and available resources are allocated more efficiently. Such approaches promote more equitable and continuous care by addressing the complexity of family contexts and facilitating coordination among the multiple services involved in care provision (Martin et al. 2019).

The findings also indicate that social work interventions generate substantial benefits for individuals with EB and their families. Improved autonomy in disease management, enhanced emotional well-being among caregivers, and greater social and educational inclusion emerged as significant outcomes, reflecting the contribution of social work beyond the mere management of resources. In this regard, interventions were perceived as contributing to the reduction in social isolation and caregiver burden, strengthening family coping capacities, and promoting the overall well-being and development of affected individuals and their families (Salamon et al. 2025; Bardhan et al. 2020).

At the same time, professionals reported that working with individuals with EB and their families also entails important personal and professional implications, including emotional challenges, ethical complexity, and opportunities for professional growth (Chateau et al. 2023). The complexity of cases, the need for continuous interaction with multiple services, and the mediation required between institutions and families appear to foster the development of professional competencies related to coordination, decision-making, and the management of complex social situations (Dures et al. 2011). Furthermore, professionals identified the perception of positive impacts on families as a significant source of professional motivation and meaning.

Regarding intervention strategies, the findings highlight the importance of fluid coordination among healthcare services, social services, educational institutions, and third-sector organizations in facilitating more efficient resource management and ensuring continuity of support for families. These results reinforce the role of social work as a mediating and coordinating discipline, essential for promoting communication between services, facilitating access to resources, and ensuring continuity of care across different institutional settings (Dures et al. 2011; Prodinger et al. 2019).

An especially relevant finding concerns the structural role that Community Social Services may assume as a central axis of coordination within the broader network of care. Due to their proximity to the community, comprehensive understanding of family realities, and capacity to integrate social, educational, healthcare, and economic dimensions, Community Social Services appear particularly well positioned to act as a key reference point for the planning and implementation of interventions. This finding emerged consistently across participants’ accounts and constitutes an empirical result of the study rather than an interpretation developed by the research team. It was scarcely addressed in the previous literature and suggests that strengthening the coordinating role of Community Social Services could improve the coherence, continuity, and effectiveness of care, while also facilitating a more efficient integration of the various resources and services involved.

From a practical perspective, the findings underscore the need to develop policies and intervention protocols that formally recognize and strengthen the role of social work in EB care. Such measures should include specialized professional training, simplification of administrative procedures, the establishment of structured interprofessional collaboration networks, and the reinforcement of Community Social Services as territorial coordinators of care. In this regard, Community Social Services could assume a leadership role in intervention coordination and case management by establishing clear and effective pathways that facilitate resource integration and interinstitutional collaboration. Furthermore, these protocols should extend to other domains associated with social work intervention, including educational, occupational, and recreational settings, thereby ensuring a comprehensive, coherent, and needs-centered approach for individuals with EB and their families.

Several limitations should be considered when interpreting the findings of this study. First, the sample was limited to twenty professionals, which may restrict the transferability of the results. Nevertheless, the low prevalence of EB inherently limits the number of professionals with direct experience in this field. In addition, professionals working in complementary areas of social intervention. such as educational, occupational, or recreational services, were not included, which may have limited the breadth of perspectives regarding interinstitutional coordination and comprehensive care.

Despite these limitations, this study presents important strengths. To our knowledge, it constitutes the first research specifically focused on the role of social work in the care of individuals with EB and their families, providing original evidence regarding the challenges, intervention strategies, coordination processes, and perceived effects of professional practice within this highly specialized field.

5. Conclusions

In conclusion, this study provides original evidence on the role of social work in the care of individuals with EB and their families in Spain, an area that remains underexplored in the scientific literature. The findings show that social work interventions are conditioned by institutional, administrative, and socioeconomic barriers, as well as by the lack of specialized training and standardized intervention protocols.

The study highlights the need to strengthen the role of social work through specialized training, the development of structured intervention protocols, and improved interinstitutional coordination pathways to ensure more coherent, equitable, and needs-centered care. In this context, Community Social Services emerge as a key coordinating axis due to their proximity to the community and their capacity to integrate healthcare, social, educational, and economic resources.

Future research should further explore the effectiveness of structured social work protocols, coordination models, and the experiences of individuals with EB and their families across different care settings.