• ABAIMAR (Balearic Association of Families of Children with Rare Diseases)
• participating families living across different areas of Mallorca
• professionals collaborating with the association, including physiotherapists, a social worker and a psychologist

The project emerged from a community-identified need and was co-designed with ABAIMAR from the outset. Through continuous dialogue, the association identified priorities related to understanding families’ experiences, documenting needs and improving support strategies. The project was progressively refined through feedback gathered from families, students and the association itself.

Students contributed through family accompaniment, documentation of needs, administration of assessment instruments, production of reports and development of an audiovisual awareness piece. ABAIMAR and participating families provided opportunities for authentic learning, experiential knowledge and critical reflection. The relationship was conceived as a mutually beneficial process aimed at generating socially useful knowledge, increasing the visibility of rare diseases and supporting students’ ethical and professional development. 

ABAIMAR actively contributed to identifying priorities, facilitating access to families, shaping the interactions between students and participants and evaluating the relevance and usefulness of project outputs. Families were not positioned as passive recipients but as knowledge holders whose lived experiences challenged and expanded students’ understandings of health, care and uncertainty.

The project was fully embedded within the compulsory course Ethics in Health Sciences and implemented as a credit-bearing service-learning experience. Positioned at an advanced stage of the curriculum, the course aims to move students beyond technical competence towards ethical reasoning, professional responsibility and critical engagement with the social dimensions of healthcare.

• To expose students to the lived experience of rare diseases beyond clinical settings. 
• To facilitate sustained interaction with families in their everyday environments. 
• To develop ethical reasoning and professional judgement in contexts characterised by complexity and ambiguity. 
• To foster students’ capacity to navigate uncertainty, diversity, inequality and asymmetrical relationships. 
• To develop students’ capacity to work collaboratively and communicate effectively with families and organisations. 
• To engage students with real-life situations involving issues of equity, participation and social inclusion. 
• To participate in collaborative decision-making processes involving negotiation and shared responsibility. 

Service activities

• Family accompaniment through structured encounters and home visits. 
• Administration of the enSERIO questionnaire developed by the Spanish Federation for Rare Diseases (FEDER). 
• Documentation of families’ experiences, needs and expectations. 
• Development of individual family reports and a joint analytical report. 
• Production of an audiovisual awareness piece entitled It is Rare Not to Be Rare. 
• Dissemination and awareness-raising activities regarding rare diseases and their social implications. 

Learning activities

• Direct engagement with families in their everyday environments. 
• Exploration of ethical dilemmas emerging from real situations. 
• Collaborative analysis and interpretation of families’ experiences. 
• Group organisation, negotiation and shared decision-making processes. 
• Production of reports and audiovisual materials. 
• Reflection on vulnerability, inequality, participation and social justice. 
• Critical examination of uncertainty and professional responsibility. 

Students were not positioned as passive recipients of knowledge but as active participants in processes of inquiry, interpretation and knowledge production. They participated directly in family encounters, contributed to decisions regarding interview strategies and collectively determined how to organise the work and distribute responsibilities. Students had to organise themselves to decide how to allocate responsibilities across three possible outputs: individual family reports, a joint analytical report and the development of an audiovisual awareness piece. This process required deliberation, negotiation and shared decision-making and demanded that students balance individual preferences with collective needs and project goals. 

The geographical dispersion of participating families across different areas of the island added a further layer of complexity. Students had to coordinate visits, travel, schedules and responsibilities collectively, taking contextual differences and unequal access conditions into account. This organisational dimension required active participation, collaboration and collective accountability. They were in charge of ensuring the legal requirements to be involved with children in educational and family settings.  

Reflection was integrated throughout the project through structured reflective narratives, focus groups and guided discussions. Students critically examined their assumptions, expectations and experiences and reflected on ethical tensions, uncertainty and the implications of their role as future professionals. Reflection was conceived as a structured, continuous and guided process integrated before, during and after the service activities, following principles derived from the DEAL model (Describe, Examine and Articulate Learning) and other critical reflection approaches in service-learning, enabling students to critically examine experiences of vulnerability, uncertainty and inequality, articulate how these experiences informed their ethical reasoning, professional judgement and civic responsibility, and transform challenges encountered during the project—such as difficulties in arranging meetings with families, sudden health crises affecting children or emerging requests from ABAIMAR—into opportunities for learning, adaptation and collaborative problem-solving.

Reflection enabled students to move beyond descriptive accounts and engage in deeper forms of ethical and critical analysis. Students reflected on how their expectations aligned or conflicted with reality, how they interpreted uncertainty and incomplete information, and how their future professional actions might influence patients’ and families’ experiences. Reflection also encouraged students to critically examine issues related to inequality, participation, social recognition and access to services and to understand ambiguity as an inherent feature of contemporary healthcare practice rather than as a limitation.

Assessment was continuous and addressed both learning processes and service outcomes. Written outputs, including family reports and group products, were evaluated through rubrics incorporating both academic criteria and community relevance. ABAIMAR actively participated in assessing the usefulness, clarity and applicability of the products developed by students. This was included in the final student evaluation.  

Reflective learning was evaluated through structured reflective narratives focused on students’ ethical reasoning, engagement with complexity and awareness of their professional role. Evaluation also included focus groups with students and the association and a follow-up evaluation conducted three years later with former participants. An ad hoc rubric and a questionnaire were developed to evaluate students knowledge and perceptions regarding rare diseases before and after the SL project. 

Values

• valuing human dignity and human rights;
• valuing democracy, justice, fairness and equality

Attitudes

• civic-mindedness
• responsibility
• tolerance of ambiguity

Skills

• analytical and critical thinking skills
• co-operation skills
• empathy
• skills of listening and observing; and co-operation skills

Knowledge and critical understanding

• knowledge and critical understanding of the self
• knowledge and critical understanding of the world

Competences for democratic culture are developed through students’ direct engagement with families living with rare diseases and with situations characterised by vulnerability, uncertainty and unequal access to services. The project requires students to listen to diverse experiences, communicate respectfully, recognise different perspectives and participate in collaborative decision-making processes. Through family accompaniment, collective reflection and the production of reports and awareness materials, students assume responsibility, negotiate meanings and work in contexts where clear answers are not always available. In doing so, they experience healthcare as a relational, ethical and democratic practice grounded in participation, recognition and social justice. 

• Development of ethical reasoning in contexts characterised by uncertainty and ambiguity.
• Increased awareness of social inequalities and structural determinants of health.
• Greater understanding of rare diseases and their implications for the everyday lives of children and their families.
• Familiarity with the enSERIO questionnaire and its use as a tool for understanding families’ experiences and needs.
• Development of skills in conducting ethnographic interviews, active listening and relational communication.
• Acquisition of competencies in preparing structured reports and synthesising information derived from real-world situations.
• Increased understanding of the role of patient associations and community organisations as sources of support, advocacy and social participation.
• Strengthened communication, relational and interpersonal skills.
• Enhanced capacity for critical reflection and professional judgement.
• Greater awareness of issues related to rights, participation and equitable access to services.
• Increased capacity to communicate appropriately, manage uncertainty and act responsibly in situations where clear answers are not available.
• Greater understanding of territorial inequalities and access-related challenges affecting health and care.
• Increased confidence and self-efficacy when responding to complex and uncertain situations. 

The project had a direct impact on participating families, who were accompanied throughout the process and reported feeling listened to, recognised and valued. Through their interactions with students, families raised concerns, explored questions about their situations and received information and guidance under the supervision of the academic tutor and the association’s professional team. This process supported families in making sense of their experiences and reinforced dimensions of recognition, participation, access to information and social justice. 

The project also contributed to the work of the Spanish Federation for Rare Diseases (FEDER) through the administration of the enSERIO questionnaire, generating information on families’ experiences and needs that could inform broader understanding, advocacy initiatives and future support strategies related to rare diseases. The project generated relevant information regarding families’ experiences and needs and contributed to adapting services and programmes developed by ABAIMAR. The association also used the findings to strengthen advocacy efforts, identify gaps in public support systems and increase the visibility of rare diseases and of its own work. 

Finally, the project reached the wider university community through the production and dissemination of the audiovisual piece It is Rare Not to Be Rare, which contributed to raising awareness, challenging misconceptions and promoting greater recognition and understanding of rare diseases and the lived experiences of affected children and their families.

One of the principal challenges concerned working in contexts characterised by uncertainty, emotional complexity and incomplete information. Students frequently encountered situations where standard responses were insufficient and where ethical judgement and relational sensitivity were required. A second challenge involved aligning expectations between academic learning stages and community expectations. Feedback from the association highlighted the importance of clarifying students’ roles and levels of competence and informed subsequent adjustments to the project design. The geographical dispersion of participating families also required significant organisational efforts, collective coordination and adaptation to contextual differences across settings.

Replication requires sustained collaboration with community organisations and the active participation of people with lived experience as co-educators. It also requires curricular flexibility, institutional support and sufficient time to prepare students for emotionally and ethically demanding situations. 

Structured reflection processes and continuous alignment of expectations between academic and community partners are essential. Adaptation is facilitated when institutions recognise service-learning as an approach that enables students to engage with uncertainty, complexity and diversity while developing democratic competences and socially responsive forms of professional practice.