Conceptual Paper on Lived Experiences and Coping Strategies of Patients with Hemophilia and their Families

Divya Varghese¹, Rajee Reghunath²

¹Ph.D. Scholar, 17^th Batch, National Consortium for PhD in Nursing by Indian Nursing Council, New Delhi. Associate Professor, St. John’s College of Nursing, St. John’ s National Academy of Health Sciences, Bangalore.

²Ph.D Guide, National Consortium for PhD in Nursing by Indian Nursing Council, New Delhi.

Principal, Amala College of Nursing, Thrissur, Kerala, India.

*Corresponding Author Email: dvarghese4@gmail.com

ABSTRACT:

Hemophilia is a rare, chronic genetic bleeding disorder that significantly affects the physical, psychological, and social well-being of individuals and their families. Beyond the biological complications of recurrent bleeding and joint damage, patients and caregivers must also adapt to uncertainty, pain, and stigma. This concept paper explores hemophilia through a nursing perspective, focusing on the lived experiences of patients and families and the coping strategies they adopt. Drawing from existing literature and patient narratives, the paper highlights emotional, physical, and social challenges, while identifying adaptive coping mechanisms such as problem-focused strategies, family-centered care, and community-based support. A conceptual framework is proposed for nursing practice that emphasizes holistic care, psychosocial support, and empowerment of patients and caregivers. The paper argues for the integration of coping strategies into nursing education and practice to improve quality of life and health outcomes in hemophilia care.¹^-⁵

KEYWORDS: Hemophilia, Nursing, Lived Experiences, Coping Strategies, Conceptual Framework, Family Care.

INTRODUCTION:

Hemophilia is a rare inherited disorder that impairs clotting and leads to prolonged bleeding episodes. While advances in medical management have improved survival, hemophilia continues to impose a heavy burden on patients and families¹^,².

Chronic pain, hemophilic arthropathy, physical disability, psychosocial stress, and uncertainty about treatment access shape their lived experiences. Nurses, being central to patient education, care, and advocacy, play a crucial role in addressing not only the biomedical but also the psychosocial dimensions of hemophilia. This paper presents a conceptual analysis of hemophilia through a nursing lens, focusing on the lived experiences and coping strategies of patients and families.

Rationale and significance:

Lived experiences reveal how hemophilia affects identity, relationships, and social participation. Coping strategies shape how patients adapt to limitations and chronic uncertainty. Families bear substantial emotional and financial burdens, often acting as caregivers and advocates. Nursing education and practice must integrate an understanding of these psychosocial dynamics to provide holistic care. A conceptual model of coping and adaptation in hemophilia can guide future nursing research and interventions.

Conceptual Framework:

This paper draws upon Callista Roy’s Adaptation Model and the Common-Sense Model of Self-Regulation to conceptualize coping in hemophilia.⁶^,⁷

Physiological Mode:

Managing recurrent bleeding, pain, disability.

Self-Concept Mode:

Coping with uncertainty, body image issues, identity as a person with hemophilia.

Role Function Mode:

Adjusting to limitations in education, work, and family roles.

Interdependence Mode:

Reliance on family, peer groups, associations, and healthcare professionals.

The framework positions nursing care as a mediator that strengthens adaptive coping (problem-focused strategies, social support, self-care skills) and reduces maladaptive responses (fear, withdrawal, emotional distress).

Application in Nursing Practice:

· Patient and Family Education: Empowering patients to self-infuse, manage emergencies, and plan safe activities.

· Psychosocial Support: Providing counseling, support groups, and coping skills training.

· Holistic Assessment: Nurses should assess both medical and psychosocial dimensions, including anxiety, stigma, and caregiver stress.

· Community-Based Care: Strengthening hemophilia treatment centers (HTCs) and associations for advocacy, awareness, and multidisciplinary care.

· Policy Implications: Integrating genetic counseling, preventive strategies, and equitable treatment access into national programs.

Advantages and Challenges:

Advantages:

· Promotes holistic care beyond physical management.

· Encourages family-centered nursing practice.

· Provides a framework for education and research in nursing.

Challenges:

· Limited resources in developing countries.

· Variability in access to factor concentrates and psychosocial support.

· Stigma and lack of awareness in communities.

CONCLUSION:

Hemophilia is more than a bleeding disorder; it is a life-altering condition that reshapes daily living for patients and their families. Through a nursing lens, lived experiences and coping strategies provide insight into the psychosocial burden of the disease and the resilience of affected individuals³^,⁴. Integrating coping frameworks into nursing practice can empower patients and families, enhance adaptation, and improve quality of life. This conceptual paper calls for nursing education, practice, and policy to recognize and respond to the multifaceted needs of hemophilia care.

REFERENCES:

1. WFH Guidelines for the Management of Hemophilia, 3rd edition. World Federation of Hemophilia; 2020.

2. Cuesta-Barriuso R, Torres-Ortuño A, Nieto-Munuera J, López-Pina JA. Quality of Life, Perception of Disease and Coping Strategies in Patients with Hemophilia. Patient Prefer Adherence. 2021; 15: 1817–1825.

3. Ramos-Petersen L, Rodríguez-Sánchez JA, Cortés-Martín J, et al. Lived experiences of patients with hemophilia regarding health-related well-being. J Clin Med. 2023; 12(5417).

4. Torres-Ortuño A, Cuesta-Barriuso R, Nieto-Munuera J, et al. Coping strategies in young and adult haemophilia patients. Haemophilia. 2019; 25(3): 392-397.

5. Rambod M, Sharif F, Molazem Z, Khair K. Pain experience in hemophilia patients: A phenomenological study. Int J Community Based Nurs Midwifery. 2016; 4(4): 309–319.

6. Roy C. The Roy Adaptation Model. 3rd ed. Pearson; 2009.

7. Leventhal H, Brissette I, Leventhal EA. The common-sense model of self-regulation of health and illness. In: The Self-Regulation of Health and Illness Behaviour. Routledge; 2003.

Received on 19.12.2025         Revised on 15.01.2026

Accepted on 09.02.2026      Published on 30.04.2026

Available online from May 02, 2026

Asian J. Nursing Education and Research. 2026;16(2):143-144.

DOI: 10.52711/2349-2996.2026.00030

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