TALKS | Health and healthy society

Healthcare System for Infants : System Intervention Model for Early Detection and Treatment of Developmental Delays in Infants

Manushi Kaushik, National Institute of Design India

+Small group breakout session with the author follows this Talk

Introduction

There is nothing in this world to match the child development for the depth and complexity of challenges it poses for those directly involved and to the society to which the child and the caretakers belong to. The world today faces a lot of challenges in this regard. The first five years of a child’s life are fundamentally important. They are the foundation that shapes children’s future. Child development is the change that occurs as a child grows and develops in relation to being physically healthy and mentally alert.

The estimated prevalence of neurodevelopmental disorders is nearly 1 in 8 among children in India. WHO states that about 1 in 6 children in industrialised nations may have behavioural intellectual disorders such as cerebral palsy, autism and developmental delays. Early detection and intervention are very crucial in improving prognosis in children with such disorders. One most important factor that is often neglected while designing a healthcare system for infants is the role of a household engagement or primary caregiver. No matter how strong the diagnosis facilities are, in the end, the child belongs to a caregiver and s/he needs to be held accountable for a major chunk of this system.

This project aims to understand the on-ground public healthcare system available for infants and after locating the gap, adding value into children’s healthcare system, through a systemic intervention.

The research study for the project was carried out in rural Gujarat, India. The public healthcare system of the Indian Government was referred and studied.

Process

The complete healthcare system was studied by juggling between field visits and digging data from internet resources. The ethnographic study model was used to conduct the on-field research study and daily visits for over few months helped in building the close connection and understanding the deep intricacies of this socio-cultural environment. To cover every aspect of the hierarchical system, all stakeholders were interviewed until the administration level.

1. Child Specialists
2. Public Health Doctors
3. Aanganwadi and ASHA Workers (Local Healthcare workers)

The insights were:

Rural parents –

1. Understand a lot of things about the child by ‘comparing’ with other relatives/neighbours
2. Talking about developmental delay considered as taboo
3. Takes suggestion from the older generation – No trust in doctor (Medical).
4. Not aware of all govt. scheme

Doctors –

1. One nodal officer for three hundred children, not possible to look at monthly data of each child.
2. No follow-up with cases detected as parents refuse to take action.
3. Regional politics lead to a lack of reporting the actual cases.
4. Huge dependence on Aanganwadi for data collection
5. Most of the data collection is manual so no cross-checking is possible.

The biggest gap in terms of the system that was discovered was the lack of trust of parents on the govt. healthcare system and at times on medical sciences. Further, the reason for this gap was embedded deeply in a low literacy rate fuelling the generation-old customs still followed.

The general healthcare system involves the healthcare worker to diagnose, report and monitor each patient. But the most important part here that is most important is the household engagement in child development. Unlike the regular health system, for which patient-doctor relationship is kept as the backbone on which the whole system is built, here on a basic level the role of caregiver is not included.

Design Intervention –

Understanding these complex socio-cultural intricacies, it was clear that one solution would not be enough for addressing a system such as this. All stakeholders at different levels need to be kept in mind while proposing solutions for this problem and also different solutions need to be designed to cater to each level individually.

1. First, the bottom-most part that needs to addressed to kick off the system and is parents. Using a simple to understand wall chart for parents at Anganwadi, which will help them to make sense about their child’s growth. Using a ladder as the metaphor for growth and ladder steps as different levels of growth.

2. For parents to trust this data, it needs to be collected from them. So, making a data collection method through USSD or IVRS service can be used to collect the data and making parents involved and accountable for their child’s development data.

3. For one doctor to cater three hundred and more children, there needs to be some sorting done for them by analysing the data. This would give them a prioritization order to start with.

4. For policymakers to build future strategies and taking them to the right places this collected data can be used. And since parents themselves have entered the data so it would make the system more transparent and authentic.

These simple interventions will be directly adding value to someone’s life. Shifting accountability from workers onto parents will lead to a more sustainable and authentic system.