Background: Immune thrombocytopenia is an autoimmune disease characterized by a low
platelet count (less than 100 u 109 /L) and pediatric patients may develop bruising or mucosal
bleeding. The concept of health-related quality of life was first proposed decades ago and has been
successfully applied in a variety of contexts. Aim: This study aimed to improve the quality of life of
mothers and their children with immune thrombocytopenia. Design: A quasi-experimental design
was utilized. Setting: The study was conducted at Benha Specialized Pediatric Hospital which
affiliated to secretariat of specialized medical centers (in outpatient clinics and hematology ward) at
Benha city. Sample: A purposive sample of children with Immune thrombocytopenia aged from 2
to less than 18 years and their mothers were recruited. Tools of data collection: Four tools were
used to conduct the study. Tool (I): Structured Interviewing Questionnaire which included 2 parts;
Part (1) Personal characteristic of studied mothers. Part (2): Mother’s knowledge regarding ITP.
Tool (II): Medical Data Sheet which included 2 parts; Part (1): Personal data of the studied
children. Part (2): Previous and current medical history. Tool (III): Mothers’ reported practice to
assess mothers' care given to their children with immune thrombocytopenia which include nose
bleeding, wound care, bathing, teeth brushing, mouth care, skin care and hair care and
administration of oral medications. Tool (IV): Scale of pediatric quality of life (Kids ITP tools) to
assess the quality of life of children with Immune thrombocytopenia. Results: Less than quarter
(22.0%) of the studied mothers had satisfactory level of reported practice in pre-guidelines phase,
while (86.0% & 80.0%) of them had satisfactory level of reported practice toward improving the
quality of life of their children with thrombocytopenia in post- guidelines and at follow-up phase.
Mean child scores of PedsQL was 48.18±14.93 pre guidelines and 60.32±11.22 post guidelines
phase. Less than half (40.0%) of the studied children had positive quality of life in pre-guidelines
phase, while (68.0% & 64%) of them had positive quality of life in post-guidelines phase and
follow-up phase. Conclusion: The designed guidelines succeed to improved mother’s knowledge
and reported practice regarding ITP and children’s quality of life. Recommendations: More
researches are required for training of mothers, about the proper care of children with immune
thrombocytopenia and raising their awareness about the nature of disease and right practices should
be done in daily different situations |
