It takes a village to raise a child. This saying has been around for long enough that even the brightest, most resource-rich scholars have trouble pinpointing its origins. But the reason why it has stood the test of time is not for poetic eloquence; that saying is still alive and well in the 20th century because it is, quite simply, true. New parents will quickly learn the merit of its truth, and seasoned parents will have already formed a solid village of their own. But what about the parents and caregivers of children who need more than what a conventional village offers?

Children with developmental disabilities have always been front and centre of policy-making and programme-designing in Singapore's early childhood healthcare system. Understandably so. However, this leaves one crucial actor very neglected: the caregiver. These parents (or parental authorities) are a cornerstone of the health system, but the invisible burden of caregiving usually stays just that: invisible. And this is an urgent and pressing problem that, if not addressed, can have devastating consequences.

Together with the Lien Foundation, KK Women's and Children's Hospital (KKH), National University Hospital (NUH), and SG Enable; AGENCY set out to understand the needs of caregivers of extraordinary children aged 0-8 during key transition points of their journey, and how the different partners in the ecosystem can work together to better support and serve them.

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Support can be built on the most noble of intentions, and still fall short

We conducted internal workshops and generative white-boarding sessions with the key stakeholders – Lien Foundation, KKH, NUH, and SG Enable – to download the current processes, touch points, and interactions with caregivers from the moment when parents start to suspect there is a developmental delay to official diagnosis. From this, we were able to identify gaps in the system, understand system constraints, and provide the input needed to create a service map across the major organisations, which had never been done before. We quickly discovered that a system of silos is not effective in breaking the cycles of trauma experienced by parents.

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"Autism is worse than cancer. With cancer there is treatment. With autism there is uncertainty because there is no cure."
_{Caregiver, research participant}

Losing identity while also facing uncertainty

Discovering that your child has a developmental disability is a life-shattering event in any parent's life. But being reminded of this heartbreaking fact time and time again throughout a care journey became cycles of trauma for the caregivers we spoke to.
We interviewed 12 caregivers through 10 'Looking Out' workshops. And this was where the research became tangled and complex, as would be expected when listening to and trying to synthesize human stories laced with emotion, differing circumstances and demographics, and ultimately, diverse experiences.
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"My parents brought me to the astrologist and said that my child will be okay at age 10. This is not possible! Once you have an education, you can't go back to superstition.”
‍_{Caregiver, research participant}

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Gleaning a deeper understanding of the readers and consumers

First, we created a map of the care ecosystem, which was mainly informed by institutional forms of care delivery, such as official diagnosis and schooling. We also mapped out the caregiver journey, not just within the existing system of care, but throughout the entire end-to-end experience – from discovering the first signs of disability and dealing with the dark woods of uncertainty through to preparing for the "right" education, and planning for future adulthood. This enabled us to pinpoint specific problems and gaps in the system.

Parenting is challenging enough – from losing one’s identity to logistical issues like time management – how would we address the layers of tension and trauma experienced by these caregivers throughout their journey?

"My pregnancy did not come at the right time. Everyone wanted me to abort, but to me it is a life. But, my perspective changed when I got the diagnosis. This never came to my mind. I didn't think about the suffering of the child.”
_{Caregiver, research participant}

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Transforming qualitative insights into a tangible way forward

When entangled in the complexities of human experience, applying an overlay of structure through analogous narrative usually helps. We employed the use of sac-cons (sacrificial concepts) to probe deeper into the inner workings of the issue, and consequently, to glean a solid analogy that could be translated into a system. Or rather, an interconnected ecosystem. This was Parentwood; an ethos, or a set of principles that would guide all players in the ecosystem through a unified language.

"Neurotypical children have a lot of resources to refer to like milestones checklists that they can use to anticipate what they expect through other parent references. But for caregivers there’s a lot of uncertainty. Nobody can say for sure that they need to do this and they can do that. There is no reference point.”
_{Early Interventionist}

Parentwood: Putting a name to the face

During our workshops, when caregivers were asked to express their experiences and feelings through pencil-and-paper illustrations, a resounding theme kept popping up in the sketches: a forest. A deep, dark wood overflowing with snarling roots under a canopy that did nothing more than block out the rays of optimism.
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This was the inspiration for Parentwood's name, and the foundation for our prototype's narrative – being thrust into the wild, our protagonists needed a backpack (tools), a bridge (institutional support through transition processes), a guide (people who can advise them through the journey), and a basecamp (a like-minded community in which they could find pockets of solace during their wilderness trek).

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Moving forward

Parentwood's long-term objective is to eventually nurture a care culture in which a parent is not being juggled between services. Instead, all parties operate all their functions under a single banner and ethos that is parent-focused, and flows between organisations; to such an extent of seamlessness that the multiple institutions are felt as one connected organisation. Or, rather, as one organism – after all, the village that raises the child is forever a living, breathing thing. One that nurtures as it grows.

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"The tangible impact of Parentwood in the long-term is about applying the principles and new ecosystem approach across the entire ecosystem of hospitals and schooling systems. We do this through Tools (both digital and physical), Spaces (both digital and physical), Roles (existing and new), and Process (refreshing the old and creating new ones); to create a cohesive experience that supports the parents of children with disabilities end-to-end,"
_{explained Parentwood's project lead, Alistair Norris.}