الفهرس 
contentOnly 14 pages are availabe for public view
 |  | from | 102 |  |  |
| | | from | 102 | | |
Abstract
Hemophilia is the most common type of severe bleeding disorders in childhood that affecting mainly males. Hemophilia in most cases is benign and can be easily controlled through simple measures. It can lead to chronic complications and lifelong disabilities if it is improperly handled since early infancy. It is usually associated with varying degrees of bleeding from slight traumatic injury. Such bleeding elsewhere is a terrifying experience for most parents.
Parents, in particular, the mothers have crucial role in helping their children adapt with their conditions. In practical term, their role involving both prevention and control bleeding episodes.
The aim of the current study was to assess mothers’ care provided for their children with hemophilia. The study was conducted in the Hematology clinic at the Outpatient Department of Alexandria University Children’s Hospital at El-Shatby in Alexandria. All mothers having children suffering from hemophilia attending the previously mentioned setting within a period of 6 months were included in the study.
Mothers’ care provided for their children with hemophilia structured interview schedule was used to collect necessary data which included characteristics of mothers and their children, mothers’ knowledge about hemophilia regarding definition of hemophilia, causes, signs and symptoms, and mothers’ care provided for their children with hemophilia regarding preventing child’s traumatic injury and controlling acute external bleeding. Every mother was individually interviewed to collect the necessary data.
The main results of the present study were as follows:
Forty three of the studied mothers were at the age of 25 to less than 30 years old.
Almost one half (46.0 %) of the studied mothers were either illiterate or read and write. Whereas, the minority of them (8.0%) had university education.
All mothers were housewives.
Mothers were equally distributed among rural and urban areas (50.0% for each).
Slightly more than half (52.0%) of the studied mothers were from extended family.
Approximately three quarters (72.0%) of children were 10 years old and more with amean age of 2.88±0.913 years.
All children were males.
One third of children had family history of hemophilia and the majority (79.9%) of the studied mothers mentioned that the uncle (mother’s brother) as a family member who had history of hemophilia.
Three quarters of the studied children had hemophilia type (A).
The vast majority (96.0%) of the children had no medical history of other diseases.
All studied children had previous hospitalization because they had traumatic injury and bleeding (100.0%).
The majority (83.0%) of the studied children received blood transfusion since the onset of hemophilia disease.
Seventy two percent of children had hemophilia since 10 years and more.
Mothers’ knowledge about hemophilia:
Around two thirds (66.0%) of the studied mothers gave correct complete answer regarding definition of hemophilia.
Slightly more than two thirds (67.0%) of the studied mothers reported that genetic factor as the main cause of hemophilia.
The vast majority (92.0%) of the studied mothers mentioned the types of hemophilia correctly.
All the studied mothers reported that bleeding after surgical procedure as circumcision process, large hematoma at any part in the body, prolonged bleeding with minor trauma and brain hemorrhage were the main signs and symptoms of hemophilia.
Regarding predisposing factors for the occurrence of hemophilia induced complications, 61.0% of the studied mothers mentioned that giving medications without doctor consultation, such, as acetyl salicylic acid was the main factor.
Sixty percent of the studied mothers stated that chronic inflammation of joint is the main complication of hemophilia.
More than three quarters (76.0%) of the studied mothers stated that the periodic follow up prevents complications.
The majority (80.0%) of the studied mothers did not know that exercises keep fitness and healthy body weight.
Slightly more than two thirds (67.0%) of the studied mothers had good score regarding knowledge about hemophilia disease.
All mothers knew that either plasma transfusion or the deficient clotting factor (VIII or IX) are the standard treatment of hemophilia.
Almost all (97.0%) of mothers were oriented about the importance of clotting factor (VIII or IX) in the prevention of bleeding.
The vast majority (96.0%) of the studied mothers mentioned that Paracetamol was the main allowed analgesic.
Seventy percent of the studied mothers reported that Tranexamic Acid ( Kapron) as the main medication used to stop bleeding.
The vast majority (92.0%) of the studied mothers had fair knowledge score about medication administration for their children with hemophilia.
Nearly two thirds (65.0%) of the studied mothers reported that cotton socked with acoagulant solution should be inserted into each nostril to stop bleeding in case of epistaxis.
The vast majority of the studied mothers reported that ice/cold packs should be applied around the affected joint for 15-20 minutes and anti-inflammatory agent as Hemoclar –Extrauma should be applied and going to hospital immediately if possible (92.0% and 98.0% respectively) to control bleeding into joints and muscles of the affected arm and/or the leg.
The majority (84.0%) of the studied mothers reported that mouth rinsing with acoagulant solution to control mouth and tooth bleeding.
Three fifths of the studied mothers had fair knowledge score regarding measures to control bleeding.
Three quarters of mothers’ attained fair total knowledge score about hemophilia.
Mothers’ practices for their children with hemophilia:-
All studied mothers informed school about their children’s disease, medicine and first aid needed in case of bleeding. In addition, never involve them in violent sports as karate and that children should carry the health identification cards and avoid the presence of child in high places alone regarding safety measures in school.
All the studied mothers did not allow their children to ride a bike alone.
All mothers used a soft sponge bath as safety measures when bathing their children.
All mothers bought play material that is free from sharp edges, pointed ends or batteries, which were made from rubber materials.
All mothers did not give acetyl salicylic acid to their children.
Almost all mothers (98.0%) applied anti-inflammatory agent as Hemoclar or Extrauma and went to hospital immediately if possible to stop bleeding into joint and muscle of the affected arm and/or the leg.
Almost two thirds of the studied mothers applied gauze socked with cold water or ice to the bridge of the nose and inserting cotton socked with a coagulant solution into each nostril (65.0% and 62.0% respectively).
The majority (84.0%) of the studied mothers rinsed the mouth with a coagulant solution to stop mouth and tooth bleeding.
All the studied mothers had poor practice score in relation to practice in case of bleeding into joints and muscles or soft tissue bleeding.
All mothers offered their children diet that is soft, easy to chew, low fat, and rich in protein, fruits and vegetables.
The majority (91.0%) of the studied mothers had good practice score concerning suitable diet for their children with hemophilia.
All mothers had poor practice score in relation to follow up for their children with hemophilia (100.0%).
Almost three quarters (72.0%) of the studied mothers never allow for their children to join in any sports.
The majority (87.0%) of the studied mothers had fair practice score concerning exercises for their children with hemophilia.
All the studied mothers avoided hot food, washed children’s mouth with warm salty water at the next day after tooth extraction and never gave acetyl salicylic acid as an analgesic and paracetamol was given instead regarding dental care after tooth extraction.
All the studied mothers had fair practice score regarding dental care.
All mothers referred their children immediately to hospital in case of the following: persistent bleeding after doing first aid, ophthalmic hemorrhage, head trauma, gastrointestinal hemorrhage and joint bleeding.
All mothers had good practice score concerning urgent referral to hospital.
Ninety five percent of the studied mothers had fair total practice score about care provided for their children with hemophilia.
There was a statically significant difference between mothers’ total knowledge score about hemophilia and their education (P<0.001).
There a statically significant difference was evident between mothers’ total practices score about hemophilia and their education (P=0.005).
Significant positive correlation was found between mothers’ total score of knowledge and their total score of practices (r = 0.554, P < 0.001).