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IRCT20181123041733N1 IRCT 2018-12-21 Ahvaz University of Medical Sciences The effect of Family-Centered Empowerment on Quality of Life of Children with hemophilia and the care burden of caregivers The effect of Family-Centered Empowerment on Quality of Life of Children with hemophilia and the care burden of caregivers 2018-11-03 anticipated 50 Complete https://irct.ir/trial/35444 interventional Randomization: Randomized, Blinding: Not blinded, Placebo: Not used, Assignment: Parallel, Purpose: Supportive, Randomization description: At first, qualified individuals, including their main carers and their children, are selected according to entry criteria and then divided into two groups of 25 pairs, using randomized block random method, and randomly assigned random numbers. Then the study questionnaires will be completed for both groups. . The quality of life questionnaire will be completed by the child. The Persian version of Zarit's Care Weight Questionnaire will be completed by the primary caregiver of the child and, if necessary, by the interviewer's method, will be completed by the researcher at the Hepatitis Clinic of Baqaee Hospital 2. In order to intervene, the researcher in this study will use a family-centered empowerment model based on its comprehensive approach among all types of empowerment approaches. This template was designed by Alhani et al. In 2003 (38). It should be noted that the intervention group will be divided into 2 groups of 8 pairs and 1 pairs of 9 pairs (including the main caregiver and the affected child). N/A Family-centered empowerment education on the quality of life of children with hemophilia and caring burden.. Intervention 1: Intervention group: In order to intervene, the researcher in this study will use a family-centered empowerment model based on its comprehensive approach among all types of empowerment approaches. This template was designed by Alhani et al. In 2003 (38). It should be noted that the intervention group will be divided into 2 groups of 8 pairs and 1 pairs of 9 pairs (including the main caregiver and the child). The intervention will include the implementation of a self-care behaviors training program based on a family-centered empowerment model that during 9 sessions of 90- A 60-minute sessions a week, based on four steps in understanding the threat, problem solving, educational participation and evaluation, will be carried out by a researcher at the hospital conference hall with the presence of primary carers and children with hemophilia. These face-to-face and face-to-face meetings will be conducted with group discussions and questions and answers between researcher, primary caregivers and children, with slideshows and films, and presentation of pamphlets. Intervention 2: Control group: The control group will receive the routine treatment and care program only. After the 9th week (one month after the intervention group program), the quality of life questionnaire for hemophilia children and the Zarit care burden questionnaire will be completed for the control group. Undecided - It is not yet known if there will be a plan to make this available Justification or reason for indecision in sharing IPD is Start the access period 6 months after printing the results.
public Dr. Shahnaz Rostami
Faculty of Nursing and Midwifery, Ahwaz
Ahvaz Iran (Islamic Republic of) 5154550888 +98 61 3733 8331 rostami-sh@ajums.ac.ir Ahvaz University of Medical Sciences scientific Dr. Shahnaz Rostami
Faculty of Nursing and Midwifery, Ahwaz
Ahvaz Iran (Islamic Republic of) 5154550888 +98 61 3733 8331 Rostami-sh@ajums.ac.ir Ahvaz University of Medical Sciences Iran (Islamic Republic of) The desire to participate in research. Diagnosis of a child with hemophilia by a physician and having a case at hematologic clinic of Baghaee Hospital, Ahvaz, Iran There is no other chronic disease other than hemophilia, such as diabetes, asthma, thalassemia. Age range 12-8 years 8 years 12 years Both Lack of record of participation in previous training programs D68.0 Von Willebrand's disease Lifestyle N/A Intervention group: In order to intervene, the researcher in this study will use a family-centered empowerment model based on its comprehensive approach among all types of empowerment approaches. This template was designed by Alhani et al. In 2003 (38). It should be noted that the intervention group will be divided into 2 groups of 8 pairs and 1 pairs of 9 pairs (including the main caregiver and the child). The intervention will include the implementation of a self-care behaviors training program based on a family-centered empowerment model that during 9 sessions of 90- A 60-minute sessions a week, based on four steps in understanding the threat, problem solving, educational participation and evaluation, will be carried out by a researcher at the hospital conference hall with the presence of primary carers and children with hemophilia. These face-to-face and face-to-face meetings will be conducted with group discussions and questions and answers between researcher, primary caregivers and children, with slideshows and films, and presentation of pamphlets. Control group: The control group will receive the routine treatment and care program only. After the 9th week (one month after the intervention group program), the quality of life questionnaire for hemophilia children and the Zarit care burden questionnaire will be completed for the control group. Quality of life for children with hemophilia. Timepoint: Before the intervention and 37 days after the intervention began. Method of measurement: Hemophilia quality of life questionnaire. Caregivers for carers of children with hemophilia. Timepoint: Before the intervention and 37 days after the intervention began. Method of measurement: Zarit's Care Bar Questionnaire. Improving the quality of life. Timepoint: 45 days. Method of measurement: Hemophilia Quality of Life Questionnaire, Zarit's Care Weight Inventory. Ahvaz University of Medical Sciences Approved 2018-11-05 The Ethics Committee of Ahvaz Jundishapur University of Medical Sciences Padada lands, avenue of knowledge, Complex Yazdan 5, Plot 62, Unit 2 Ahvaz Khouzestan Iran (Islamic Republic of)