Psychosocial Support for People With Haemophilia by Anne Duffy - Ireland Presentation at EHC annual Conference - October 2013 - Bucharest

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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