The document discusses the importance of psychosocial support for individuals with hemophilia and their families, emphasizing the role of healthcare professionals in helping patients cope with the emotional, psychological, and social challenges of the disorder. It outlines the factors influencing the experience of psychosocial issues, models of care, and the emotional responses of parents, siblings, and patients through different life stages. Practical ideas for enhancing quality of life and support networks among families are also provided.

1. 26th European Haemophilia
Consortium
SUPPORT
PSYCHOSOCIAL
Bucharest, Romania
4-6 October 2013
Counsellor
Anne Duffy
Nurse
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2. What is Psychosocial Support?
• Psychosocial support is an important part of
comprehensive care for people with haemophilia
and their families
• Psychologists, social workers & counsellors can help
patients and their families adapt to and face the
challenges of living with a bleeding disorder
• Regardless of resources it is important to identify
the issues and the challenges that can affect a
person’s cognitive and emotional development
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3. Why it is needed
• To create a space to enable a PWH talk about his
thoughts, feelings and concerns
• Enables the PWH to gain a personal understanding
of haemophilia
• Develops coping strategies for physical, mental,
emotional & social challenges
• Ultimate goal is to empower the PWH to manage
his life & its challenges independently
• Quality of life is related to ability to adjust to a
chronic disorder and its challenges
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4. Influencing Factors
Factors which can determine how psychosocial
issues are experienced and addressed:
•Cultural values & socio-economic factors
•Access to Haemophilia Treatment Centres
- Factor availability
- Access to physiotherapy
- Access to corrective orthopaedic surgery
•Support from haemophilia organizations
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5. Models of Psychosocial Care
Hospital based psychosocial support:
•Specific healthcare professionals involved
- social worker and psychologist
•Providing one-to-one counselling
•Peer support group – bringing patients and their
families together in specific groups
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6. Models of Psychosocial Care
NMO based psychosocial support:
•Building a strong sense of community
•Outreach to members:
Regular Phone calls
Home visits & Hospital visits
•Peer support groups – adult pwh; young adult
pwh; mothers & fathers groups
•Meetings for members – informative & social
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7. Living with Haemophilia
Life long Challenges
– Physical
– Psychological:
Child’s/sibling’s emotional responses
- Financial
– Employment
– Impact of physical hardships and
limitations
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8. PARENTS
Range of Emotions
– Shock
– Denial
– Anger
– Fear & Worry
– Depression
– Guilt
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9. SIBLINGS
Range of Emotions
–Anger
–Denial
–Fear
–Guilt
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10. GRANDPARENTS
• Difficulty in acceptance
• Tension within extended family
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11. THE FIRST YEAR
• Anxious
• Self blame
• Need to control own fear
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12. TODDLERS & PRESCHOOL CHILDREN
• Worry
• Fear
• Frightened
• Failure to adjust
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13. STARTING SCHOOL
• Parents’ initial fears may be diffused
by playschool
• Parents need confidence to help
teachers learn about haemophilia
• Need to be assertive with teachers,
challenging for parents
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14. ADOLESCENCE
• Taking control
• Feeling different
• Relationships can be difficult
• Vulnerability of carrier girls
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15. SEXUALITY
Issues requiring sensitivity:
• Carrier girls with a low factor levelheavy blood loss during menstruation
• Young men – bleeds induced by sexual
activity
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16. RELATIONSHIPS & SELF ESTEEM
• Building self-esteem
• Telling can be stressful
• Need to understand in order to discuss
• Viruses may cause more stress
• Risk of transmission
- Soul searching
- Anxiety
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17. AGEING WITH HAEMOPHILIA
• New Challenge – Never expected to grow old
• Confronted with age-related ailments
• Involuntary dependence on care
• Involuntary unemployment – Early retirement
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18. CONSEQUENCES OF AGEING
• Loss of social contacts
• Loneliness of living alone
• Fear of unknown future
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19. PRACTICAL IDEAS
• The future for people with bleeding disorders
can be bright even with limited resources
• Parents can support and learn from each other
• Children can learn from adults with haemophilia
• Adults with haemophilia can support each other
• Weekends for all the family to learn, support and
have fun together
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22. REFERENCES
• Growing up with Hemophilia
Dr P Jones, 1994
• Raising a Child with Hemophilia
L A Kelly, 1999
• Basic Concepts of Hemophilia
R Butler, S Crudder, B Riske, S Toal,
2002
• Psychosocial Issues National Hemophilia Foundation
2006
• Aging with hemophilia
E Mauser-Bunschoten,
C Smit, A De Knecht-van Eekelen, 2007
• Psychosocial care for people with Hemophilia
F Cassis, WFH Monograph No 44, 2007
• Presentation slides
R Mohan, 200922

23. THANK YOU
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