Psychosocial Support

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Psychosocial Support for People With Haemophilia

by Anne Duffy - Ireland

Presentation at EHC annual Conference - October 2013 - Bucharest

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Psychosocial Support

  1. 1. 26th European Haemophilia Consortium SUPPORT PSYCHOSOCIAL Bucharest, Romania 4-6 October 2013 Counsellor Anne Duffy Nurse 1
  2. 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 2
  3. 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 3
  4. 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 4
  5. 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 5
  6. 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 6
  7. 7. Living with Haemophilia Life long Challenges – Physical – Psychological: Child’s/sibling’s emotional responses - Financial – Employment – Impact of physical hardships and limitations 7
  8. 8. PARENTS Range of Emotions – Shock – Denial – Anger – Fear & Worry – Depression – Guilt 8
  9. 9. SIBLINGS Range of Emotions –Anger –Denial –Fear –Guilt 9
  10. 10. GRANDPARENTS • Difficulty in acceptance • Tension within extended family 10
  11. 11. THE FIRST YEAR • Anxious • Self blame • Need to control own fear 11
  12. 12. TODDLERS & PRESCHOOL CHILDREN • Worry • Fear • Frightened • Failure to adjust 12
  13. 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 13
  14. 14. ADOLESCENCE • Taking control • Feeling different • Relationships can be difficult • Vulnerability of carrier girls 14
  15. 15. SEXUALITY Issues requiring sensitivity: • Carrier girls with a low factor levelheavy blood loss during menstruation • Young men – bleeds induced by sexual activity 15
  16. 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 16
  17. 17. AGEING WITH HAEMOPHILIA • New Challenge – Never expected to grow old • Confronted with age-related ailments • Involuntary dependence on care • Involuntary unemployment – Early retirement 17
  18. 18. CONSEQUENCES OF AGEING • Loss of social contacts • Loneliness of living alone • Fear of unknown future 18
  19. 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 19
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  22. 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. 23. THANK YOU 23

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