The annual cost to families related to caring for a young child with developmental disability in Uganda is high and unaffordable according to new analysis published in PLOS Global Public Health.

The biggest cost drivers are the cost of seeking medical care and the indirect loss of a caregiver’s income due to loss of employment.

The analysis was led by the Medical Research Council/Uganda Virus Research Institute and London School of Hygiene & Tropical Medicine Uganda Research Institute with colleagues from the London School of Hygiene & Tropical Medicine (LSHTM). It was funded by the Cerebral Palsy Alliance Research Foundation and is the first study to date to report on the cost of caring for a child with developmental disability like cerebral palsy to households in Uganda.

The new estimates show that the economic burden of caring for a young child with developmental disability is higher for households with a lower level of income than those on higher incomes, and for households in urban areas of Uganda than those in rural areas. They also show a higher economic burden for those households caring for a child with severe disability and those that experience paternal abandonment.

Mr Kenneth R. Katumba, Scientist at the MRC/UVRI & LSHTM Uganda Research Unit and Research Degree Student at LSHTM, who led the study, said: “As Uganda and other governments move towards Universal Health Coverage, vulnerable populations that face potentially impoverishing catastrophic healthcare expenditure should be identified and protected.”

The analysis included data from 70 households in Uganda. It found that the annual cost of illness was USD 949, more than 100% of the national GDP per capita for all households that took part. The lowest household cost was USD 10 and the highest was USD 3,921.

Families caring for a child with a severe disability faced average costs of USD 358 more each year than those caring for children with mild or moderate impairment.

The study was conducted within the Baby Ubuntu feasibility trial which examines the feasibility, acceptability and early evidence of impact of a programme of early care and support for young children with developmental disabilities and their caregivers, led by researchers at LSHTM. Data was collected using questionnaires, conducted between July 2017 and April 2019.

Dr Cally Tann, Principal Investigator of the Baby Ubuntu trial and Associate Professor at LSHTM, said “This research clearly highlights the enormous financial impact for families caring for even very young children with developmental disabilities, and it is likely that these impacts continue to escalate over time. There is a critical and urgent need to understand how we can best support livelihoods of affected families, in addition to providing early care and support for children.”

The research team found that paternal abandonment was also common, with almost a third (31%) of families affected. Mothers of children who had been abandoned by their fathers lost an average of USD 430 in financial support annually.

Households in urban areas spent significantly more on average each year compared to those in rural areas: USD 1,132 vs USD 674, a difference of USD 452 per year.

84% of households included in the study experienced catastrophic expenditure related to caring for a child with developmental disability which led to coping strategies including reducing food consumption, selling property and borrowing money.

Direct and indirect costs were included in the estimates. Direct costs included: those incurred by seeking medical care, such as transport to facilities, medication and admission or consultation fees; reductions in household wealth to accommodate the costs of caring, such as a reduction in food consumption; plus any expenses for home modifications to improve the wellbeing of the child affected by developmental disability. Indirect costs included loss of employment and loss of income due to caring responsibilities.

Each year, nearly 30 million children are at risk of developmental difficulties and disabilities, including cerebral palsy, global developmental disability and visual and hearing loss, due to newborn health conditions, often associated with perinatal brain injury. The majority of affected children live in resource-constrained countries.

Programmes of early care and support for children with developmental disability have the potential to reduce the financial impact on families. The study suggests that households experiencing paternal abandonment experience less economic impacts when participating in such programmes. However, the scalability and sustainability of early care and support programmes depends on their cost and cost-effectiveness.

The study team call for national efforts to curb this catastrophic health expenditure.

Read the paper.