Hidden populations and the Sustainable Development Goals

During July this year, South Africa reported to the United Nations (UN) on the country’s progress to meet the Sustainable Development Goals (SDG). The SDGs commit to “leave no one behind”. This principle includes disabled people, which is a welcome first: the SDGs are the first international call to action that include disabled people since the primary healthcare Alma Ata conference 50 years ago. Disabled people are neither mentioned in the Global Strategy for Health for All by the Year 2000 nor in the Millennium Development Goals.

The SDGs are, therefore, inclusivity in practice. But in practice, it is challenging.

To monitor and measure progress, the SDGs require “high-quality, timely and reliable data that is also disaggregated by ‘disability’”. But data and statistics compiled and analysed in a December 2018 SDG report indicate that persons with disabilities are not yet sufficiently included in the implementation, monitoring and evaluation of the SDGs. Many national statistical systems across the globe face serious challenges in this regard.

As a result, accurate and timely information about certain aspects of people’s lives are unknown, numerous groups and individuals remain “invisible”, and many development challenges remain poorly understood.

Deaf (and other disabled) women – as a hidden and hard-to-reach population – pose challenges for monitoring and evaluation.

Recent work of the University of Cape Town (UCT) Health and Human Rights Programme in the Public Health Medicine division of the School of Public Health and Family Medicine has been focusing on the maternal health of Deaf women of child-bearing age. “Deaf” capitalised refers to permanently sensorially and legally disabled women with congenital or early onset of audiological deafness and whose first language is South African Sign Language.

Filling the information gap

According to the World Health Organization, low- and middle-income countries account for 94% of all maternal deaths and are also where 80% of persons with disabilities reside. Yet these countries still have no credible quantitative data on pregnancy histories and outcomes of disabled women.

Our interest is to establish a monitoring and evaluation mechanism to track the implementation of policies and programmes on access to sexual and reproductive health for persons with disabilities. We want to improve research and data to monitor, evaluate and strengthen sexual and reproductive health and services for persons with disabilities.

Deaf (and other disabled) women – as a hidden and hard-to-reach population – pose challenges for monitoring and evaluation. They are not easy to access for research and health care. As a population, Deaf people do not have a defined geographical base and healthcare attendance is dispersed across a range of services and sites.

It is near impossible to identify Deaf women through medical records as few developing countries, including South Africa, have electronic medical records implemented in public sector health facilities, and the disability status of patients remains largely unrecorded. A challenge is the absence of a method that provides a representative or probability sample that allows extrapolation to the wider population.

When asked how to improve maternity services, the women resoundingly suggested increased access to interpretation services.

Methods have been developed to address the challenges of sampling hidden populations – but these methods tend to be costly and time consuming. We are working to develop a protocol that is easy to implement, cost-effective and rigorous, and that can be evaluated by comparing what Deaf women report about their pregnancy histories to data in the Provincial Health Data Centre.

Reaching the hard-to-reach

We began with an urban-based study in Cape Town in 2016, with the support of Waru Gichane and Maraya Fontes – interns from the New York-based Mount Sinai International Exchange Program for Minority Students. Forty-two signing Deaf women of child-bearing age were interviewed using a structured questionnaire conducted in South African Sign Language.

We found that rates of successful pregnancies, miscarriages and terminated pregnancies in this population closely resembled rates among women in the general population of the Western Cape. Most Deaf women, however, reported experiencing communication issues due to limited interpretation services. When asked how to improve maternity services, the women resoundingly suggested increased access to interpretation services.

The study concluded that for this sample of signing Deaf women recall of pregnancy history and service use is reliable and valid. However, extending this approach to other similar populations will require further research. 

We are developing a protocol that will be piloted in a targeted multi-site, provincial-level study with non-governmental organisations providing points to access Deaf people. By extending the work to rural areas, we seek to reduce the marginalisation of rural Deaf women.

If we are to make progress towards the SDGs – and particularly, if we are to leave no-one behind – we need research that can reach hard-to-reach populations, such as Deaf women, wherever they are.