Hemophilia is a complex condition that affects individuals' psychosocial development across various stages of life, leading to issues such as anxiety, depression, and social isolation. Psychologists and social workers play a crucial role in providing support and coping strategies for patients and their families, helping them manage the emotional and social challenges associated with the disease. An integrated multidisciplinary approach that includes psychosocial care is essential for optimizing the health and well-being of affected individuals.

1. PSYCHOSOCIAL INTERVENTION
IN
PEOPLE WITH HEMOPHILIA
PROBHAT BOSE
Rehabilitation Psychologist & Medical & Psychiatric S/W
Institute of Neurosciences, Kolkata

2. Concept of Hemophilia
◦ Haemophilia is a serious disease whose unpredictability
causes concern in daily life.
◦ It prevents those affected from fully integrating into
society
◦ due to frequent absences from school/ work
◦ limited ability to play sports
◦ the constant need for factors

3. Issues and stressors arise at different stages.
◦ Support for different stages of Psychosocial development,
Psychosocial functioning and well-being are often specific to
age and cognitive development.
◦ These stages can be classified as:
◦ Infant to toddler (new-born to age 5)
◦ coping with the diagnosis and
◦ balancing vigilance and overprotectiveness
◦ Early childhood (6-9 years)
◦ The early childhood years are important for the development of cognitive skills, social
competence and emotional health.

4. Issues and stressors arise at different stages.
◦ Pre-adolescence (10-13 years) & Adolescence (14-17 years)
◦ To teach children how to manage their hemophilia.
◦ During this stage, children gradually gain confidence in their treatment, their bodies
and their own ability to manage their condition.
◦ Adulthood (18 years and over)
◦ During the transition to adulthood, life often becomes more complicated and people
may face challenges on several fronts: work, interpersonal relationships and financial
stability.
◦ Cost of treatment
◦ Social isolation and Depression
◦ Risk of alcohol and drug consumption

5. Psychosocial Concern related to Hemophilia :
◦ Several psychosocial issues are potentially relevant in the clinical management of
haemophilia, including it being a chronic and incurable condition; e.g.
◦ People with haemophilia can react by denying their condition and its
manifestations and not adhering to treatment.
◦ Many of the haemophilia patients also go through the “DABDA” phases (5 stages of grief).
◦ Due to the complexity of relationships surrounding genetic diseases, parents and
relatives may have their own issues that contribute to making life easier or more
difficult for the person with haemophilia.
◦ Anxiety, sadness and depression resulting in mental health disorders are most
significantly found in patients with haemophilia.

6. Role of Psychologist & Medical Social
Worker:
◦ Psychologists, Social workers and counsellors play a key role in helping patients and their
families by providing information and support during treatment and help them to adapt and
learn to cope with their new reality.
◦ Provide psychosocial support by helping patients and their families develop strategies to cope
with physical, mental, emotional and social challenges related to having a bleeding disorder.
◦ The ultimate goal is to empower people affected by haemophilia and other bleeding disorders
to manage their circumstances and challenges autonomously.
◦ Therefore, haemophilic patients need extensive social support, both from their families,
who help them cope with the daily complications due to their disease and from experts, who
help them manage their health.

7. Management:
◦ Managing haemophilia is challenging both in terms of medical treatment and its broad impact on
many aspects of the individual's life, including self‐perception.
◦ Family and spouses provide emotional stability, help, and support during health complications
due to their illness, a sense of future through children and grandchildren, and a feeling of
satisfaction with life.
◦ Some people with haemophilia may focus on the emotional challenges, while others find ways to
better cope with their situation.
◦ Short-term psychotherapy and social services can help individuals with haemophilia cope with the
symptoms and limitations and develop a healthy sense of self.
◦ People with haemophilia must adapt to optimally interact with peers and to practice sports and
social work and also should occasionally engage in recreational activities.

8. Disability Acts, Certificates &
Benefits:

11. CONCLUSION
◦ Haemophilia and other chronic illnesses affect each person beyond
the physical problems the condition can cause.
◦ In order to optimize the efforts to facilitate the health of the
patients, it is important to provide/seek psychosocial care as part of
an integrated multidisciplinary approach.