The Other Patient in the Room
"If every child deserves the opportunity to thrive, why do we so often forget the person carrying them?"
There is a saying that "it takes a village to raise a child." But after spending time in the Cato Manor community, I have found myself asking a different question: what happens when the village is exhausted?
As students, we are taught to assess movement, development, play, sensory processing and participation. We learn how to identify delays, analyse occupations and develop evidence-based interventions. When I first arrived at my community placement, I believed one of my roles was to help children with CP, ASD, GDD and DS reach their developmental milestones.
"Every therapy journey begins long before the clinic it begins with the caregiver who never stops showing up."
It began with a mother. Although every child had a different diagnosis and every caregiver had a different story, one thing remained painfully constant.
They were tired. Not the kind of tired that disappears after a good night's sleep, but the kind that settles into your bones after years of lifting your child, travelling long distances for appointments, waiting in overcrowded clinics, worrying about finances and still finding enough energy to smile when your child smiles.
This blog explores why maternal and child health matters to South African society and what this means for occupational therapists working at a community level like Cato Manor.
One morning at the clinic in Cato Manor, I was assessing a child with CP and like every student eager to apply what I had learnt in class, I immediately focused on what I had been trained to see, muscle tone, posture, trunk control, sitting balance and upper limb function. My attention was completely on the child. But while discussing the child's progress with my classmates, I glanced across at the mother sitting quietly beside us. She had not said much throughout the session, but it was the way she held her child that caught my attention. Every movement seemed practised, almost automatic, as though she had repeated the same lifting, positioning and comforting routine thousands of times before. She looked physically present, but emotionally and physically exhausted.
As we spoke with her, she quietly shared that most nights she barely slept because her child struggled to settle comfortably. She explained that everything revolved around clinic appointments, carrying her child, managing the household and caring for the rest of her family. She smiled while telling us this, but it was the kind of smile that seemed to hide years of fatigue rather than joy.
In that moment, something shifted within me. I realised I had spent almost thirty minutes assessing the child's abilities, yet I had not once considered the occupations of the person sitting beside them. I had analysed the child's participation without recognising that the caregiver's own occupations, sleeping, resting, working, socialising and caring for herself had slowly disappeared. That experience fundamentally changed how I see OT. I no longer believe that the child is the only client in the room. Every child arrives with someone whose life has also been transformed by disability. If we overlook the caregiver's wellbeing, we risk overlooking one of the greatest influences on the child's participation and development.
Since that day, one of the first questions I silently ask myself before every paediatric session is no longer, "What does this child need?" but rather, "How is the person caring for this child coping?" I have learnt that the answer to that question often shapes the success of every intervention that follows. Before this placement, maternal and child health meant antenatal care, immunisations and reducing mortality rates. Those are undeniably important, but I have come to understand that maternal and child health extends far beyond keeping mothers and babies alive. It is about creating the conditions in which families can participate in everyday life with dignity, hope and opportunity.
Research consistently demonstrates that the earliest years of life shape future health, education and occupational participation. Black et al. (2021) explain that the first 1,000 days of life are a critical period for brain development, where maternal nutrition, physical health, emotional wellbeing and responsive caregiving influence children's lifelong outcomes. Likewise, the Nurturing Care Framework highlights that children flourish when they experience good health, adequate nutrition, safety, opportunities for learning and nurturing, responsive relationships (Britto et al., 2022).
Working in Cato Manor gave those words faces. Every child we worked with came with a diagnosis, but every diagnosis also came with a caregiver carrying an invisible load.
Some mothers travelled for hours using multiple taxis to attend therapy. Others balanced caring for children with disabilities while raising siblings, searching for employment or managing their own health conditions. Others quietly admitted they no longer knew whether they were "doing enough." I realised something uncomfortable.
We often describe caregiver involvement as important for therapy outcomes, but rarely do we ask whether caregivers themselves are being cared for. OT has taught me to look beyond impairments and understand people within the occupations and environments that shape their lives. Community practice has challenged me to take that one step further.
The child is never the only client in the room. As students, we notice how caregivers position their children during feeding, whether they encourage play, how they respond when frustration arises, whether they feel confident implementing home programmes and whether exhaustion has begun replacing hope. Initially, I thought educating caregivers was simply another intervention. Now I believe it is the intervention.
Instead of asking,
"What is the ideal intervention?"
I began asking, "What intervention is realistic within this family's everyday occupations?"
Those are not the same question. One reflects textbook practice. The other reflects community practice. This placement has also changed the way I view health inequalities.
Before entering the community, I understood concepts such as occupational justice and social determinants of health academically. Now I have seen them lived out daily. Hall et al. (2023) remind us that South African children's opportunities are deeply influenced by poverty, unemployment, access to healthcare, education and safe living environments. In Cato Manor, these realities are impossible to ignore.
Children with disabilities are not only navigating disability, but they are also navigating disability within communities affected by poverty, overcrowding, unemployment and limited resources. Sometimes I wonder whether we celebrate resilience too easily. We praise mothers for their strength. Yet should resilience be something society depends upon?
Should caregivers sacrifice their own physical and mental health because respite services are scarce? Should love to compensate for systems that continue to underserve families?
These questions have made me realise that OT is not only about rehabilitation. It is also about advocacy. As future occupational therapists, we cannot only advocate for children to participate in meaningful occupations. We must also advocate for caregivers to have opportunities to rest, work, socialise, care for themselves and receive the support they deserve.
Ignoring caregiver wellbeing is not neutral. It quietly limits the child's opportunities for participation too. Maternal and child health is therefore not simply a healthcare issue. It is an issue of occupational justice, human dignity and social responsibility.
Because when we invest in mothers, we invest in children.
When we invest in children, we strengthen families.
And when families are supported, communities begin to thrive.
So perhaps the most important question I will carry into my future practice is no longer,
"What does this child need?"
Instead, it is,
"Who is caring for the caregiver
I have identified four resources for maternal and child health in this context:
Helpful Resources
Perinatal Mental Health Project (PMHP) Supporting maternal mental health through counselling, education and referrals. https://pmhp.za.org
Down Syndrome South Africa (DSSA) Information, advocacy and family support services. https://www.downsyndrome.org.za
Action in Autism (KwaZulu-Natal) Support, education and intervention services for children with Autism Spectrum Disorder and their families. https://actioninautism.org.za
South African Depression and Anxiety Group (SADAG) Mental health support for caregivers experiencing stress, burnout and depression. Helpline: 0800 21 22 23 https://www.sadag.org
MomConnect: A national digital platform registering pregnancies and sending health information via SMS or WhatsApp (Centre for Public Service Innovation, 2026). Dial *134*550*2# or register at any clinic.
References
Black, M. M., Walker, S. P., Fernald, L. C. H., Andersen, C. T., DiGirolamo, A. M., Lu, C., McCoy, D. C., Fink, G., Shawar, Y. R., Shiffman, J., Devercelli, A. E., Wodon, Q., Vargas-Barón, E., & Grantham-McGregor, S. (2021). Early childhood development coming of age: Science through the life course. The Lancet.
Britto, P. R., Lye, S. J., Proulx, K., Yousafzai, A. K., Matthews, S. G., Vaivada, T., Perez-Escamilla, R., Rao, N., Ip, P., Fernald, L., MacMillan, H., Hanson, M., Wachs, T. D., Yao, H., Yoshikawa, H., Cerezo, A., Leckman, J. F., & Bhutta, Z. A. (2022). Nurturing care: Promoting early childhood development. The BMJ.
Hall, K., Sambu, W., Berry, L., Giese, S., & Almeleh, C. (2023). South African Child Gauge 2023. Children's Institute, University of Cape Town.
Mannan, H., McVeigh, J., Amin, M., et al. (2019). Caregiver burden among families of children with disabilities in low-resource settings. Disability and Rehabilitation.