From shared experience to sustained leadership: a community of practice study of haemophilia society stakeholders in India

Diksha D Shroff; G Sreejith; B Sulochana; Dinesh M Nayak

doi:10.2478/jhp-2025-0017

Abstract

Abstract Background

Stakeholder-led organisations play a critical role in bridging gaps in care and advocacy. Understanding the lived experiences and contributions of core facilitators within these communities is essential to strengthen their impact.

Aim

This study explores how core facilitators collaboratively sustain a haemophilia society (HS), using the Community of Practice framework (CoP) to interpret patterns of shared purpose, collective learning, and evolving leadership in a rare disease support setting.

Methods

An exploratory qualitative study, using in-depth, semi-guided interviews with people with haemophilia (PwH), caregivers and healthcare professionals working in voluntary, titled roles in the various HS centres of the Hemophilia Federation India, was conducted between February 2024 and January 2025. Data were analysed using a framework analysis approach, ensuring validity through member checking, reflexive journals.

Results

A total of 22 office bearers (9 PwH, 6 caregivers, 7 healthcare professionals) participated in the study. Four overarching themes emerged: (1) Shared interest and commitment, driven by stakeholders’ personal and professional ties to haemophilia; (2) Building relationships and collective identity, marked by trust, peer support, and belonging; (3) Multifaceted roles and holistic support, involving medical, psychosocial, and administrative contributions; and (4) Sustaining engagement and fostering future leadership, reflecting concerns over disengagement among PwH and leadership gaps. Applying the CoP framework post-analysis highlighted how shared learning and identity shaped the HS’s evolution, underscoring the need for stakeholder-led initiatives in preventive care and community sustainability.

Conclusion

While stakeholders shared their journey in establishing the support organisation and were optimistic about the future, this study underscores the need for emphasis on the engagement of PwH by integrating a holistic, truly sustainable approach to this progress; there must be greater inclusion of PwH in leadership, advocacy, and day-to-day activities of the HS.

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Authors

Diksha D Shroff

Manipal Academy of Higher Education, Manipal, Karnataka, India
G Sreejith

Manipal Academy of Higher Education, Manipal, Karnataka, India
B Sulochana

Manipal Academy of Higher Education, Manipal, Karnataka, India
Dinesh M Nayak

dinesh.nayak@manipal.edu

Manipal Academy of Higher Education, Manipal, Karnataka, India .