Severe beta-thalassemia
Conditions
Interventions
Experimental group:Implement a family management program for children with severe ß ß-thalassemia based on social ecological systems theory.
Control group:received routine care and follow-up
Sponsors
Shenzhen Second People's Hospital
Eligibility
Sex/Gender
All
Age
1 Years to 17 Years
Inclusion criteria
Inclusion criteria: 1. The child has been diagnosed with severe ß ß-thalassemia at a specialized hospital according to guideline-based diagnostic criteria, and the time since diagnosis is = = 3 months; 2. the child is < 18 years old; 3. the child’s father and/or mother has lived with the child for more than 3 months and assumes the primary caregiving responsibilities, including disease management and daily care; 4. the child and family members participate voluntarily and sign an informed consent form.
Exclusion criteria
Exclusion criteria: 1. The child has a history of psychiatric or psychological disorders; 2. the child has comorbid severe chronic diseases (e.g., bronchial asthma, malignant tumors, congenital heart disease); 3. the father and/or mother has a history of psychiatric or psychological disorders; 4. the father and/or mother has a severe illness and is unable to cooperate with questionnaire data collection.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Family management level; | — |
Secondary
| Measure | Time frame |
|---|---|
| Family Members' Disease Knowledge Score; | — |
Countries
China
Contacts
Public ContactJinghua Liang
Shenzhen Second People's Hospital
Outcome results
None listed