System-level analysis of early detection of disabilities among children – strengths and constraints in the context of Tanzania

A recent Thrive qualitative study in Tanzania aimed to identify factors that enable or limit the early detection of disabilities in children and connect families with services. Priscilla Wahome, a senior consultant who formed part of the team that worked on the research, explains more about the strengths and challenges that exist and the potential way forward.

Globally, there are close to 53 million children under the age of five with disabilities – and it’s estimated that 95% of them live in low- and middle-income countries. In Tanzania, it is not known how many children under five have disabilities, but the 2022 Tanzania Demographic and Health Survey estimates that between 2.7% and 4.1% of children aged 5-19 have disabilities, with a higher prevalence among older age groups. Meanwhile, the recent census indicated a prevalence of 8.8% for children aged 7-11, 9.1% for those aged 12-16, and 7.8% for 17-21-year-olds. A 2021 UNICEF situation analysis of children and young people with disabilities in Tanzania suggests that the most common disability difficulties reported among children include difficulty in seeing, walking and basic self-care.

Early identification of disabilities and access to follow-on services can improve the health, education and equity outcomes of children with and at risk of disabilities, helping them to develop to their full potential in line with the UN Convention on the Rights of the Child and the UN Convention on the Rights of Persons with Disabilities. However, in resource-limited contexts, including Tanzania, children with disabilities and their families often face significant barriers to accessing early detection services, healthcare and support – which can deepen the challenges they experience and potentially worsen the child’s condition, making interventions more challenging. There is therefore an urgent need to strengthen early identification and referral systems to help children access the services needed and in turn thrive in all areas of their lives.

Strengthening early detection of disabilities in Tanzania

The Government of Tanzania is committed to the inclusion of people with disabilities and has developed guidelines for early detection and related activities. A range of policies guide disability issues, and there are multiple ministries and government agencies designated to monitor policy implementation at different levels.

Locally-grounded research can help to inform improvements to early detection and rehabilitation services for children under five. This Thrive study aimed to enhance the understanding of the strengths and limitations of early detection and referral systems for children with, or at risk of, disabilities in resource-limited settings in Tanzania. Conducted in collaboration with the government of Tanzania and other key stakeholders, it included interviews with national policymakers, parents of children with disabilities, community leaders, service delivery staff and local government in the regions of Tanga, Lindi and Shinyanga, which were purposively selected to ensure geographic diversity. These regions reflect areas with a high prevalence of childhood disability and varying levels of health system capacity.

Barriers to early detection

We found that the early detection of disabilities and referral services in Tanzania are hampered by several factors, majorly relating to governance, systems and processes. For example, while the Prime Minister’s Office – Labour, Youth, Employment and Persons with Disability (PMO-LYED) has made attempts to facilitate communication and cooperation across the diverse range of parties involved in disability issues (including several national ministries, private organisations and non-government organisations), the coordination and integration of systems and services is limited – as an example, integrating the work of non-government organisations into government frameworks is challenging.

Furthermore, while formal definitions of disability in Tanzania align with international standards, there is limited practical understanding and clarity around definitions across government sectors, healthcare workers and communities, creating inconsistencies in service eligibility and healthcare interventions. Health facility and community health workers also record disability inconsistently, due to a reliance on general forms that do not differentiate between impairments and verified disabilities. In addition, the limited formal disability documentation system means families rarely receive written proof of their child’s condition, making access to services harder.

There are also resource challenges. For example, funding for childhood disability services is limited; there is an insufficient number of healthcare workers in primary healthcare settings; and basic screening tools are often unavailable in local health facilities (especially in rural areas). This leaves health workers to rely on observation or improvised tools. While community health workers play a crucial role in identifying disabilities in children and connecting families to healthcare services, they are often not provided with adequate training and resources. However, efforts by the government are underway to scale up the number of community health workers and improve training, though this progress is being hindered by resource constraints.  

Additionally, financial difficulties prevent many families from seeking care early enough for their children, especially because of a lack of accessible and affordable services. Even though it is government policy for children under five (including those with disabilities) to be treated at no cost at public sector health facilities, many families still face additional costs like consultation fees and medical and transport expenses (especially as they often have to travel long distances to seek specialised care in specialised healthcare facilities).

At the community level, stigma, misinformation, fear and traditional beliefs – such as linking disability to supernatural causes, curses, witchcraft, misfortune or punishment for parents’ actions – often create barriers to early detection. Several studies suggest that negative attitudes towards disability remain one of the most pervasive barriers to inclusion in Tanzania and greater sub-Saharan Africa. While there has been some positive progress in shifting attitudes towards disability in the communities we studied, we found that some parents struggle to accept their child’s condition, and in some cases also face judgement from others, including social exclusion, insulting comments, ridicule and mockery. This social pressure often discourages parents and caregivers from seeking medical help for their child. Participants in this research indicated that some caregivers often turn to traditional healers, which could delay diagnosis, lead to missed opportunities for early intervention, and sometimes result in harmful practices. One of the most common parental reactions to the stigma surrounding disability is to ‘hide’ their children (in some cases, this has involved families relocating to new premises once the community becomes aware that their household has a child with a disability).

In addition, within communities, knowledge and information about disability remain inconsistent.Most parents reported continued lack of knowledge about specific conditions, treatments, assistive devices, and the rights of children with disabilities. A strong tendency to equate disability with visible, physical impairments (such as clubfoot, missing or extra limbs, or albinism) across various participant groups, especially at the community level, often leads to the under-recognition of non-physical or less-apparent disabilities like hearing impairments, visual impairment or learning difficulties.

A co-developed way forward

Based on the findings of our study, recommendations were co-developed together with officials from Tanzania’s different government ministries, agencies and departments. These are outlined in a report and summarised in an associated policy brief and include: strengthening coordination between different parties to ensure services are more integrated; increasing resource allocation, to support disability programmes and train and motivate community health and primary healthcare workers to screen and refer children more effectively; empowering families to recognise the early signs of disabilities and to feel confident seeking assistance; and addressing disability-related stigma and discrimination to shift perceptions and increase openness.

While the findings and recommendations are not generalisable to the whole of Tanzania, they may provide insights that are useful for other regions in the country, as well as other countries in sub-Saharan Africa – particularly with regards to informing increased and targeted resource allocation to improve the experiences and future of children with and at risk of disability.

The research forms part of this Thrive study: Understanding early detection systems for children with, or at risk of, disability.