Thalassemia interferes with the normal developmental tasks of

patients by adding a psychosocial burden to the recurrent blood

transfusions and daily parenteral iron chelating therapy that they
must attend to.

The psychosocial burden on children and adolescents with thalas-

semia affected many aspects of life such as education, time off
school, sport, difference from friends/siblings, social interactions, family
adjustment, anxiety and isolation

Education
 Education was one of the greatest difficulties that affect
children with thalassemia, as a result of frequent admissions to
hospital for blood transfusions and medical treatment, which will
cause absence from school for several times.
 mainly due to having to attend hospital for investigation and blood
Transfusions or hospitalization
 Medical treatment follow up had a clear impact on thalassemic
children compared with the patients currently at school.Moreover
thalassemic patients who have higher levels of difficulty in their
education are seeking for work opportunities and are not currently
at school. This may be attributed to a low family monthly income.
 low intelligence quotient appears to be correlated with poor school
performances and physical or social restrictions

Sports
 Practicing sport was one of the burdens that affect children with
thalassemia, as thalassemia leads to low hemoglobin levels,fatigue,
and general weakness.
 sporting activities of thalassemic children were affected by
symptoms such as weakness, difficulty breathing

Family and friends relationship problems

 thalassemic patient feel different from their peers and elaborate
negative thoughts about their life, guilt senses, increased anxiety and
low self-esteem, shyness
 thalassemic patients have difficulty in relationships with their
sibling and peers in terms of establishing a comprehensive
relationship with their siblings and peers.
 thalassemia is extremely stressful, and patients face a variety of
physical, psychological and social problems.
 children with thalassemia have a moderate to severe level of anxiety
because they have a lower self-image and increased hopelessness
and higher anxiety scores than their healthy peers, as well as
increased psychiatric morbidity.
 severe level of isolation, which might be related to thalassemia
symptoms and complications like a yellow face, short stature,
delayed growth, inability to establish a family, and the possibility
that their friends at school do not want to play with a sick child
 Schoolchildren may experience teasing or bullying, can be
traumatic and difficult for a child to deal with. Eventually they
become quiet and withdrawn . This can actually affect the
self-confidence of both adults and children

Impact on parents
 affects parental financial state very badly, most of the families were
poor and unable to afford the costly treatments
 When the symptoms of the disease are treated, the social activities
of the affected family members are restricted due to regular
transfusion
 parents withdraw from social situations and family and friends. They
may feel that no one understands what they are going through, and
therefore prefer to spend time alone with just the immediate family.
 before the screening , parents face the difficulties to arrange the
blood supply and expensive medicines for the affected patients
 Affects the quality of life of mothers of beta thalassaemic children in
terms of physical health (concerning energy and fatigue, pain and
discomfort, sleep and rest subscales), psychological health (bodily
image and appearance, feelings)
 Mothers often conceal their emotional distress, and their attitude is
generally overprotective towards the thalassemic children.
 Some parents may feel guilty that they “gave this” to their child
and subconsciously may detach from the child.