https://doi.org/10.17037/DATA.00003311
This dataset contains information on costs to families relating to caring for a young child with developmental disability in Uganda, alongside developmental disability measures and socio-demographic characteristics. The data were collected as part of a feasibility trial of an early care and support programme for young children with development disabilities and their families. Data are included for the 70 participants and their families who were included in the analyses described in the corresponding paper "The economic burden incurred by families caring for a young child with developmental disability in Uganda".
Researchers wishing to access the dataset are invited to complete a data application form, outlining the variables/measurements requested and proposed use of data.
Applications will be evaluated on the basis of their compatibility with the study's research objectives and the ability to provide de‐identified data sufficient to meet the intended purpose, without breaching participant confidentiality or the study's ethical and legal commitments. Applications will be reviewed by the PI in consultation with the UVRI research ethics committee.
Successful applicants will be asked to sign a Data Transfer Agreement prior to being provided with the data.
The dataset contains 70 rows (1 for each participant) and 65 variables (listed below).
Please note:
| Variable name | Variable description | Answer code | Answer label | Variable type |
| resp_no | Respondent/caregiver study number | Numeric | ||
| site | Living context: rural vs urban location | Text | ||
| Rural | Urban | |||
| Urban | Rural | |||
| group | Trial arm allocation | Text | ||
| Control | ||||
| Intervention | ||||
| agemm | child's age in months | Numeric | ||
| sex | Child's sex | Text | ||
| Female | Female | |||
| Male | Male | |||
| condtn_delay | does the child have neurodevelopmental delay | Text | ||
| No | No | |||
| Yes | Yes | |||
| condtn_disability | does the child have neurodevelopmental disability | Text | ||
| No | No | |||
| Yes | Yes | |||
| visits_total_3mnths | Total number of all visits made to all facilities in 3 months | Numeric | ||
| visits_cp_3mnths | Total number of visits made to all facilities for cerebral palsy related reasons | Numeric | ||
| borrow_amnt | Amount of money borrowed to take care of the child | Numeric | ||
| borrow_returnd | Amount of money returned on borrowed amount | Numeric | ||
| otherexp | Other expenditure on special home modifications since the child's diagnosis | Numeric | ||
| income1_mama_AA | Mother's Annual Income from source 1 | Numeric | ||
| income2_mama_AA | Mother's Annual Income from source 2 | Numeric | ||
| p_loss_op_AA | Annual Caregiver productivity loss while caring for child as outpatient | Numeric | ||
| p_loss_ip_AA | Annual Caregiver productivity loss while caring for child as inpatient | Numeric | ||
| p_loss_op_self_AA | Annual Mother's productivity loss while caring for child as outpatient | Numeric | ||
| p_loss_ip_self_AA | Annual Mother's productivity loss while caring for child as inpatient | Numeric | ||
| transportcost_op_AA | Annual Transport cost while caring for child as outpatient | Numeric | ||
| transportcost_ip_AA | Annual Transport cost while caring for child as inpatient | Numeric | ||
| admissioncost_ip_AA | Annual Admission cost while caring for child as inpatient | Numeric | ||
| feedingcost_ip_AA | Annual Feeding cost while caring for child as inpatient | Numeric | ||
| drugscost_ip_AA | Annual Cost of drugs prescribed and bought in the facility while caring for child as inpatient | Numeric | ||
| drugsoutcost_ip_AA | Annual Cost of drugs prescribed but bought outside the facility while caring for child as inpatient | Numeric | ||
| labcost_ip_AA | Annual Cost of laboratory tests ordered and got in the facility while caring for child as inpatient | Numeric | ||
| laboutcost_ip_AA | Annual Cost of laboratory tests ordered but got outside the facility while caring for child as inpatient | Numeric | ||
| consultncost_ip_AA | Annual Consultation cost while caring for child as inpatient | Numeric | ||
| feescost_ip_AA | Annual Cost of fees while caring for child as inpatient | Numeric | ||
| labcost_op_AA | Annual Cost of laboratory tests ordered and got in the facility while caring for child as outpatient | Numeric | ||
| laboutcost_op_AA | Annual Cost of laboratory tests ordered but got outside the facility while caring for child as outpatient | Numeric | ||
| medscost_op_AA | Annual Cost of medication bought in-facilty while caring for child as outpatient | Numeric | ||
| medsoutcost_op_AA | Annual Cost of medication prescribed but bought outside the facility while caring for child as outpatient | Numeric | ||
| consltncost_op_AA | Annual Cost of consultation while caring for child as outpatient | Numeric | ||
| feescost_op_AA | Annual Cost of fees while caring for child as outpatient | Numeric | ||
| direct_inpatient_costs_AA | Total annual direct inpatient costs | Numeric | ||
| direct_outpatient_costs_AA | Total annual direct outpatient costs | Numeric | ||
| incomesum_mama_AA | Total annual mother's income | Numeric | ||
| Income loss_loss of employment | Annual Income lost due to loss of employment | Numeric | ||
| Income loss_time off work | Annual Income lost due to taking days off to care for child | Numeric | ||
| Cover cost | Annual Cost of someone else covering the mother to care for the child | Numeric | ||
| cost_abandon | Annual Value of income lost in support from partner since child's diagnosis | Numeric | ||
| seeking_care_op | Total annual cost of seeking outpatient care | Numeric | ||
| seeking_care_ip | Total annual cost of seeking inpatient care | Numeric | ||
| seeking_care | Total annual cost of seeking both inpatient and outpatient care | Numeric | ||
| foodreducedcost | Value of food foregone to take care of child | Numeric | ||
| wealth_reduction | Value of assets sold to take care of child | Numeric | ||
| food_X | Household anual expenditure on food | Numeric | ||
| wood_X | Household annual expediture on firewood+B18 | Numeric | ||
| transport_X | Household annual expediture on transport | Numeric | ||
| comm_X | Household annual expediture on communication | Numeric | ||
| toilet_X | Household annual expediture on toiletries | Numeric | ||
| electricity_X | Household annual expediture on electricity | Numeric | ||
| gas_X | Household annual expediture on gas | Numeric | ||
| water_X | Household annual expediture on water | Numeric | ||
| leisure_X | Household annual expediture on leisure | Numeric | ||
| hhd_spending_AA | Total annual household expediture | Numeric | ||
| spnd_qnt | 3 groups of annual household expenditure | Numeric | ||
| 1 | Low expenditure group | |||
| 2 | Middle expenditure group | |||
| 3 | High expenditure group | |||
| cost_abandon_gain | Increase in partner support since child's diagnosis | Numeric | ||
| cost_abandon_loss | Loss is partner support since child's diagnosis | Numeric | ||
| dq_final | DQ Score | Numeric | ||
| hine_final | HINE score | Numeric | ||
| dq_final_gp | 3 groups of DQ score | Text | ||
| mild | mild | |||
| moderate | moderate | |||
| severe | severe | |||
| hine_final_gp | 3 groups of HINE score | Text | ||
| mild | mild | |||
| moderate | moderate | |||
| severe | severe | |||
| dq_combined | DQ score with mild and moderate groups combined | Text | ||
| Mild/Moderate | Mild/Moderate | |||
| severe | severe | |||
| hine_combined | HINE score with mild and moderate groups combined | Text | ||
| Mild/Moderate | Mild/Moderate | |||
| severe | severe |