NEWS & EVENTS

Psychosocial Issues for People with Hemophilia

Dec 14 2011, Wed

Psychosocial Issues for People with Hemophilia

an excerpt from from Guidelines for the Management of Hemophilia (World Federation of Hemophilia, 2005)

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A person with hemophilia and his family need psychological and social support in coping with an illness that is chronic, often painful, and sometimes life-threatening.

It is a financial burden and places restrictions on several aspects of normal living.

 

The following are guidelines for helping persons with hemophilia and their families to deal with the psychosocial aspects of this illness. :

  •          When delivering the news about the diagnosis, prepare the patient for bad news, discuss it with them in simple terms, and allow them to express their feelings about the news. What they need is reassurance that help as well as treatment is available.
  •          When there are setbacks, acknowledge them, and assist the patient to work through his emotions. Provide care and support patiently.
  •          When a patient has to undergo a procedure of any kind, explain the procedure carefully and in terms he can understand. Be open about the amount of pain involved and possible complications. Answer questions that the patient may have.

  •          Coping with a chronic illness can result in burnout. Be aware of the signs and assist the patient in working through this period in his life. Provide suggestions and support for coping mechanisms.
  •          In the case of children, talk to them, not just their parents. Many children can understand a good deal about their illness and can work with the physician if properly informed and educated.
  •          Do not neglect the siblings that are healthy.
  •          The social worker should provide support for the patient and the family. Where social workers are unavailable, enlist the assistance of local groups and organizations to provide much-needed support.
  •          The physician should serve as a resource person for these important support networks. 

Daily living

  •          Persons with hemophilia can perform usual tasks and, therefore, should be encouraged to engage in productive and leisure activities at home, in the workplace, and in recreation areas.
  •          Persons with hemophilia must be reassured that they have the care and moral support of others so they do not become isolated and experience depression.


The following are basic guidelines for the various persons/groups concerned.

 

For the person with hemophilia

 The person with hemophilia should be encouraged to:

  •       Accept himself as a person with hemophilia who can successfully function in society despite this chronic condition.
  •    Accept his own strengths and limitations and not blame himself or others for having hemophilia.
  •     Think and act positively. Continue with his usual tasks, choosing activities that have lower risk of injury.
  •             Feel confident sharing with a family member or a friend his feelings and experiences of his health condition.
  •              Always have contact numbers or addresses of people, clinics, and health centres that can provide immediate information and necessary medical attention when needed. 

For the family

  • The patient and all family members must recognize and acknowledge the presence of hemophilia within the family.
  • Every member of the family must be provided with at least basic information on the physical,  sychological, and economic dimensions of hemophilia.
  • Family members with no hemophilia must be available to provide emotional, physical, and spiritual support, if needed, to the member with hemophilia.
  •   Family members must become aware of emotional or attitudinal changes of the person with hemophilia as this may indicate stress that may be related to bleeding occurrences, physical pain, or emotional difficulty that may need immediate intervention.
  • Family members, as caregivers, must try to be calm when bleeding, pain, and other hemophilia signs and symptoms occur in the patient in order to demonstrate that this condition can be calmly managed at home or anywhere.
  • When the need for medical attention or hospitalization is necessary, family members must be able to recognize this need and be available to assist immediately and in whatever way possible to avoid further complication.
  • The person with hemophilia should always be encouraged to socialize with other members of the family and within the community.
  •  Indoor as well as outdoor activities with lesser risks of injury or harm to the person with hemophilia must be encouraged.
  •  A young, active child with hemophilia commonly has numerous bruises. Parents may be wrongfully accused of child abuse.

 

For the community

  •       Basic information and education should be given to the community where there is an identified member with hemophilia, provided the patient/family consents. By doing so community members will be more willing and available to respond to the person with hemophilias needs. Community members must be fully informed that hemophilia is not a communicable disease and, therefore, a person with hemophilia should be encouraged to participate in any community activity.