None listed
Conditions
Interventions
Intervention1: Palliative Care Guidelines for Parents of Children with LLND: In the first phase of the study, evidence-based recommendations will be developed based on the needs of parents of children
Sponsors
Ambili Venugopal
Eligibility
Inclusion criteria
Inclusion criteria: 1 Parents of children affected with Muscular dystrophy Post-sequelae of meningitis and encephalitis Cerebral palsy Down syndrome Autism Hypotonia or flaccid paralysis global developmental delay and non provocative seizures. 2 Primary care giver accompanying the child. 3 Parents should be able understand either Telugu or English 4 Parents who all are willing and provide informed consent for participation in the study. 5 Child should be aged between 2 to 18 years of age 6 Child should be diagnosed with the condition minimum 6months duration.
Exclusion criteria
Exclusion criteria: 1 Parents who refuse to participate or do not provide informed consent for the study.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 1 Effect of palliative care guideline on the QoL of children with selected LLND and their parents. 2. Effect of the palliative care guidelines on parental attitudes towards the care of their children with selected LLND.Timepoint: base line four weeks twelfth week | — |
Secondary
| Measure | Time frame |
|---|---|
| 1 To find out the association between QoL of children with selected LLND and various socio demographic variables. 2 To find out the association between QoL of parents of children with selected LLND and various socio demographic variables. 3 To find out the association between parental attitudes towards the care of their children with selected LLND and various socio demographic variables. Timepoint: base line four weeks twelfth week | — |
Countries
India
Contacts
Public ContactDr Arun Babu T
AIIMS Mangalagiri
Outcome results
None listed