Effective treatment for hemophilia exists. This allows, potentially, complete social integration and a good quality of life. But if the children suffering from hemophilia are not educated to compete, by stimulating their resources and a positive view of themselves, it will be very difficult for them to assert their place in the world.
In this section, let's look at the various factors that either have a positiveinfluence (Protection factors) or negative influence (Risk Factors) on the lifeof hemophilic children. And let's look at how we can reinforce the positive protectionfactors.
Risk Factors
Risks are all those circumstances and conditions making the patient with hemophilia susceptible to accidents and / or reduced well-being. There are three main psycho social risk groups:
Personal risks - related to behaviour and personality of the person with hemophilia
Family risks - related to family educational patterns
Educational and Social risks - related to certain social scenarios that threaten the well-being of children with hemophilia
| These risks are tabulated as follows |
| Personal | Family | Social and Educational |
|
Passivity/Dependence (due to fear of accidents) No acceptance of limits (Low self-esteem can facilitate lack of skills/lack of strength to face peer pressure when tempted to partici
|
No acceptance of the disease Blaming or punishing the child or showing excessive anxiety in response to an injury can cause the child to not to inform the parents immediately when he has had an accident or suffered an injury |
Social models of risk (the pressure that peers can exert them onto take risks like say, “he doesn't do that because his mom will nag him if she knows”. This can be very effective if the child receives group acceptance in return for risky behaviour) |
Protection Factors
These are all those conditions that will help the child with hemophilia to be stronger and more resistant when coping on a daily basis with the risks linked to his disease. The protection factors are, among others:
Personal factors - related to the patient's behaviour and personality
Family factors - related to the educational environment and of family education where the child with hemophilia lives that facilitates stronger resistance and greater ability to cope.
Social and educational factors - linked to the social environment of peers, to the scholastic and social environments in general that influences the child with hemophilia A
| Personal | Family | Social and Educational |
|
High self-esteem and a good opinion of himself makes the child resistant to feelings of inadequacy in the eyes of his peers, lowers the probability of getting depressed and improves acceptance of self-limitations of the disease involvement in a wide variety of areas of interest flexibility in keeping or changing specific goals so that they develop acceptance of the limits imposed by the disease, will be more resistant and will tolerate not being able to participate in certain risky games. Autonomy/Self-Care places the children with hemophilia in a stronger position regarding the people they live with and on whom they necessarily depend to some extent. Open communication when injuries/accidents occur because by doing so prompt treatment is possible Effective confronting skillssuch as perception of control, social competence, communication skills, emotional expression and the assertive capacity of “saying no” to temptations and dangerous invitations, will make hemophilia patients less vulnerable to environmental risks Emotional expression is linked to better adjustment in chronic patients |
A stable climate with clear limits and rules induces a predictable environment and, as a consequence, a situation under control – an appropriate context in which to develop the child’s confidence and safety Emotional support – the capacity of the parents, grandparents and siblings to encourage in social contexts the patients’ self-esteem and autonomy. Good family support allows them to build self-esteem and express themselves through confidence in their own abilities Psychological acceptance of hemophilia – a factor that will lead to normalization of the inherent problems in the family environment caused by the disease. For instance, a calm but effective response to injuries. Self-care promotion – the child should participate in his own decision making. Ask his opinions, listen to him and reach agreements instead of just telling him what to do. Open and clear communication Knowledge |
Team mates – the existence of friends will serve as a social and emotional support and will facilitate the feeling of belonging to a group of equals. Social support – A social and pedagogic environment will facilitate regular and pleasant scholastic activity enjoyable school activities A social and scholastic environment that doesn’t establish social and treatment differences, except in those essential to safety, between a child with hemophilia and his friends and classmates |
General Intervention Guidelines
To achieve the objectives listed under Protection Factors the following counseling/intervention guidelines are suggested:
Personal resistance development
To protect and develop children's self-esteem
Focus on the positive aspects of the patient's personality and behavior, and empower their capabilities. E.g. " Not every child is able to do what you are doing"
Stimulate the child's total development including mental activity, social skills' scholastic integration, and psycho motor ability, (intellectual, emotional and creative development). E.g." your parents told me a few days ago you were able to do……"
To make children understand, and accept the limits imposed by the disease
Show understanding with the difficulties expressed by the children.
Make the child think (through questions) to help him to reassess a specific situation to avoid the perception of limits as a tragedy and to learn to deal with them. E.g. "What do you think is more positive for you: to complain about those things you cannot do or to think about what you can positively do, to do it and enjoy it?" Is there another way that you can enjoy yourself without getting hurt?" "You are right, it is dangerous to play football, but you could enjoy doing…"
Using examples refer to the numerous limitations that appear in life:that some things are not feasible although greatly desired and there is no choice but to give up wanting them. Explain how to cope with a problem, pointing out the advantages of starting a new project, and of doing somethingdifferent.
Use the example of certain handicapped people as relevant and meaningful role-models to the child.
It is important for the child to achieve a balance between the development towards independence and the knowledge that hemophilia imposes some limits.
To promote the feeling of being challenged by the disease
Inculcate in the patients the responsibility for their own care and the shared responsibility of therapy
Discuss with them the uselessness of complaining, while making allowance for the discomfort and suffering they are experiencing
Drive the conversation to towards objective concepts in order for them to see what they can do to do or feel better
Clarify misleading thoughts on hemophilia, neutralizing fatality linked to the disease. E.g. " The fact of a child having hemophilia doesn't mean psychological problems will certainly appear"; You are 12 years old, you are kind, you are bright and you have a disease called hemophilia. You are very good playing chess, you have very good friends, your sister is very cool, you are outstanding in drawing, you have to use reading glasses because you got a headache when you read.." (..) " Do you want to keep on finding your limitations or the wonderful things you know how to do …? "In fact, we are all different but we are all worth the same"
The disease and its symptoms can produce feelings of self-defeatism and hopelessness and become symbols of disgrace and fatality or on the other hand, can raise feelings of defiance and the will to meet a challenge. The resistance and the strength of the patients against their disease will be greater depending on how capable we are of developing in them and their families these latter feelings.
To promote autonomy and self care
Follow the rule. If a patient is able to do something by himself, donot do it for him.
Regarding self-care, try to have the children themselves make their own decisions; E.g. "What do you think you should do if you fall and get injured?"; "Do you think it is important to do..?" "You are right, it is! And are you ready to do?" "Are you sure?"….. 'Do you want to learn how to self-inject?"
Give credit to specific behavior that defines autonomy and self-care. E.g. " I am really surprised, you have been learning just for a few days how to self-inject and you are already able to do it……". Or "Your mother told me you fell yesterday, you got injured and you told her right away, that is very good!" It is also useful to relate stories based on real life models or symbolic tales that develop self-care and self-determination behavior, stories that are attractive to children.
Assign jobs and responsibilities to children's capacity and development.
Promote in children a growing responsibility for therapy and self-care, and gradually reduce parent supervision while the therapy process progresses.
To promote confidence and assertive capacity to say "No" to group's pressure to take risks
Show understanding when a child manifests discomfort because they aremade to feel different from other children.
Reinforce the value of the child being brave enough to accept the challenge of being different and of making his own decisions. "I am amazed to see how, although you were under so much pressure from your school mates and how terrible you felt, you were able to stick to your decision….You are daring to be different". "Congratulations! I know they suggested you play soccer with them and you were able to say "no", you suggested you could be the referee and you were satisfied with that option".
Help to differentiate between when to accept what the majority does or wants and when to defend your own decisions.
Help children to perceive that it is possible to keep to their own decision without damaging the relationship with their peer group (if possiblethrough a role-playing model)
Family protection encouragement
To help parents become an exemplary model to their children
Identify adequate confronting behaviors regarding their child's disease and communicate them to the parents
Discuss with them the importance of their role and help them to distinguish an appropriate response to risks from a non-appropriate response. Unconsciously, they could become stress inducers or, on the other hand they could stimulate appropriate responses in their children. For instance, if the child falls, parents could react with an exclamation as; "That's terrible son! I told you", or with a calm comment such as; "That was quite a fall! Are you okay?"
Ask parents to bear in mind that "children learn faster from what they see rather than from what they are told to do".
Promote a climate in which parents learn to tolerate mistakes and failure, to discriminate between what is good and less effective example and to avoid trying to be "the perfect parents".
To help parents discriminate between effective and ineffective help
Give some examples of "over protective" and "hyper permissive" parents and discuss their effects and risks.
Help parents find a balance between permanent attention to situations potentially dangerous to health and the development of normal activities.
To promote the emotional support of the family
Discuss the principle; "If there is anything children can do by themselves allow them to do it" and its practical consequences.
Inform parents about the many ways of listening to their children. Wehave to listen to them as to what they say and what they feel.
Generate time for talking, for playing and for sharing.
Promote within family values regarding respect for diversity among human beings. For instance, in conversation with your children express the value you give to diversity: "Some body could be very good at sports, such as basket ball, some body else can be very good in other areas such as computers." Discuss with parents the different criteria needed to achieve a clearly structured family environment, consistent and predictable rules.
To promote a stable and predictable environment
Have the children take part in the decision-making when setting up these rules and criteria.
Make sure that bedtime, playtime, and meal times are not erratic buton the contrary, are regulated by the above mentioned criteria.
Search for coherence and agreement between both parents regarding thelimits that have to be set for certain behavior, which sanctions will exist and which awards or which privileges will be given for which behavior.
If necessary, suggest that parents go for special consultation shouldthey face particularly difficult behavior problems.
Remind parents that their other children without hemophilia need their love and attention too. Siblings could feel less loved because theyreceive less attention than their brothers with hemophilia.
As far as possible, parents should keep the same rules for the all the children.
To support parents
how empathy for emotional reactions that often affect parents-feelings such as distress, depression, anger, feelings of guilt, hopelessness,fear, uncertainty, helplessness, sadness and loneliness.
Help parents how to understand and manage their emotions.
Provide them with the specialized help such as consultation with Psychologists attached to the Hemophilia Society.
Improving care in the social and scholastic environments
To ensure social and educational integration
Parents need to maintain a good relationship with the school and theteachers.
Education strategy should be shared between parents and the child's teachers.
Teachers must be educated about hemophilia as a disease, its risks, its myths and the impact it might have on children's lives
Certain activities with a low risk level such as swimming, playing guitar, carom board, chess, scrabble etc. should be encouraged.
Achievement both academic and social and signs that indicate recognition of the limits hemophilia may impose are to be acknowledged.
Participation in social networks and altruistic groups to be encouraged.