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.

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Publication Details

Journal
Haemophilia
Published
2026-09-08
DOI
https://doi.org/10.1111/hae.70398
Primary Topic
Hemophilia Treatment and Research
Type
article
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article

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

Rubén Cuesta‐Barriuso, María del Carmen Rodríguez-Martínez, Marta Elisa Seoane‐Martín
Haemophilia
Hemophilia Treatment and Research
article

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

Rubén Cuesta‐Barriuso, María del Carmen Rodríguez-Martínez, Marta Elisa Seoane‐Martín
article en

Abstract

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.

Haemophilia
Universidad de Oviedo (ES), Instituto de Investigación Biomédica de Málaga (ES), Instituto de Investigación Sanitaria del Principado de Asturias (ES), Universidad de Málaga (ES)
Openalex Percentile: Top 10%
Hemophilia Treatment and Research
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