Occupational Therapy in Haemophilia Care: Perceived Role, Barriers and Expectations Among People With Haemophilia, Family Caregivers and Occupational Therapists.

INTRODUCTION

Evidence on the application of occupational therapy in people with haemophilia is limited, and its integration into routine care remains scarce.

OBJECTIVE

To explore the perceived role, barriers, and expectations related to occupational therapy in haemophilia care from the perspective of patients, caregivers, and occupational therapists.

METHODS

An exploratory qualitative study was conducted using six online focus groups between September 2025 and May 2026. By purposive sampling, 32 participants were included: 11 patients with haemophilia A or B of moderate or severe phenotype, 10 caregivers, and 11 occupational therapists. The sessions followed a semi-structured guide, were transcribed verbatim, and analysed using a deductive-inductive thematic approach.

RESULTS

Patients and caregivers described difficulties related to joint damage, pain, autonomy, activities of daily living, and participation, as well as spontaneously developed coping strategies. Knowledge of occupational therapy was generally limited. The three subgroups perceived it as a potentially useful resource to adapt activities and environments, prevent risks, promote self-care, and promote autonomy and participation. The main barriers were lack of information and visibility, absence of referral pathways, unequal access, scarcity of resources, and limited specific training in haemophilia.

CONCLUSION

Occupational therapy was perceived as a possible complement to multidisciplinary haemophilia care. Greater visibility, targeted training, clear referral pathways, and studies evaluating structured interventions are required.