Mental and Behavioural Disorders
Conditions
Interventions
The World Health Organzations Caregiver Skills Training Programme
Sponsors
Kings College London
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: Child: - Age between 2 and 9 years. This is the target age the WHO CST programme was developed for. The CST is unsuitable for children under 2 years as it presumes a higher level of developmental maturation, and is unsuitable after age 9 years because puberty and sexual maturation then become important issues. - DSM-5 diagnosis of specific neurodevelopmental disorders associated with impairments in social and social communication domains, including 1. Autism Spectrum Disorder 2. Intellectual Disabilities (intellectual disability; global developmental delay; unspecified intellectual disability). In addition, also we will include children with conditions with a known cause with intellectual disability as a consequence, e.g. Down’s syndrome, Prader Willi Syndrome and Foetal Alcohol Syndrome. 3. Communication disorders: Language disorder and Social Communication Disorder only (not including speech sound disorder, childhood onset fluency disorder or unspecified communication disorder) Caregiver: - Having the long-term caring responsibility for a child aged 2-9 years with a DD, preferably as the primary caregiver - Resident in the same household as the child and having sufficient contact time during the week with the child with DD (seeing the child at least 5 days a week on average) to carry out homework exercises - Able to attend three individual home-based sessions and nine group sessions - Intending to stay within the study area for the next 12 months - Ability to speak Amharic/ Kiswahili/Kigiriama/English (as appropriate for the site) - Caregiver is 18 years of age or older, or caregiver is younger than 18 years and the biological parent of the child with DD (and therefore considered emancipated youth)
Exclusion criteria
Exclusion criteria: Child: - Other neurodevelopmental disorders in the DSM-5 (ADHD, motor disorders, specific learning disorder) without the presence of autism, communication disorder, intellectual disability or global developmental delay will be excluded. The CST focuses on addressing delays and impairments in the social and communication domain; children with diagnoses in these other categories of neurodevelopmental disorders have needs that are not well aligned with the strategies offered in the programme. - Children with epilepsy only without co-occurring neurodevelopmental disorder. - Child with DD is in need of urgent medical attention (for condition other than DD); - Severe malnutrition: assessed using Mid Upper Arm Circumference, with 5 years) with a clinical specialist confirming malnutrition is so severe the child is unlikely to directly benefit from CST; - Child has co-occurring physical or sensory disabilities or health problems that mean the strategies taught in the CST are unsuitable, including: o Severe to profound hearing loss, severe visual impairment or totally blind (mild/moderate impairments are permitted); o Severe motor impairment: inability to sit independently; inability to move upper extremities independently. Caregiver: - Lives outside the delineated study cluster - Family took part in the CST programme previously - Caregiver is in need of urgent medical attention. - Caregiver has sensory disabilities or intellectual disabilities that severely limit the caregiver’s ability to participate in the CST and/or to implement CST strategies with their child, including: o Severe to profound hearing loss, severe visual impairment or totally blind; o Having a difficulty to communicate because of impaired speech; o Moderate, severe or profound intellectual disability
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The primary outcome variables are the PedsQL measuring caregiver’s quality of life and the CBCL assessing the child’s behavioural problems. The CBCL (Achenbach & Rescorla, 2000 2001) is a 99 (pre-school age) or 113 (school age) item caregiver-report questionnaire assessing the frequency of the child’s externalising and internalising problem behaviours, including anxiety and depression. It has been translated and validated in a large number of languages around the world, including Amharic and Swahili (Kariuki et al., 2016; Magai et al., 2018). Analyses will be done using the raw CBCL Total scores. The PedsQL Family Impact module (Varni et al., 2004) is a 36-item scale that assesses the impact of the child’s condition on family functioning, including the caregiver’s physical, emotional, social and cognitive functioning, communication and worry, as well as on the family’s daily activities and family relationships. The scale has previously been translated and validated in many languages, and we translated and validated the measure to Amharic (Borissov et al., 2021) and Swahili. The PedsQL urgent version will be used, asking about the family’s quality of life across the past 7 days. Analyses will be conducted on PedsQL Total scores, including all 36 items. | — |
Secondary
| Measure | Time frame |
|---|---|
| The main secondary outcomes will be the intervention effect on PedsQL and CBCL at T2. Ten additional secondary outcomes are specified, all focusing on T1. These include: 1. The Adapted Family Interview Schedule FIS stigma scale 2. The Patient Health Questionnaire PHQ-9 3. Household Food Insecurity Acess Scale-HFIAS 4. The discipline section UNICEF’s Multiple Indicator Cluster Survey-MICS 5. WHO caregiver knowledge skill test 6. EQ5D-5L 7. EQ5D-Y 8. Oslo Social Support scale 9. The Adapted Affiliate Stigma scale 10. The Communication Profile Adapted | — |
Countries
Ethiopia, Kenya
Contacts
Public ContactMelissa Washington Nortey
Project manager
Outcome results
None listed