People with Down syndrome must be included in conversations about their healthcare
“Many people with Down syndrome are being failed by healthcare systems that were not designed around their needs, experiences, or long-term wellbeing".
People with Down syndrome value relational, respectful and person-centred healthcare.
Frequently excluded from conversations about their own healthcare.
Important to incorporate voices, lived experiences of people with Down syndrome and their families.
People with Down syndrome and their families consistently value healthcare that is relational, respectful, and person-centred, rather than focused solely on clinical efficiency. However, they continue to experience fragmented care, delayed diagnoses, inaccessible communication, and poor coordination between services.
These are some of the key findings of two related studies conducted by a team of international researchers, including researchers from Stellenbosch University (SU). The two studies, which are both review articles, were published Tuesday (26 May 2026) in The Lancet Child & Adolescent Health and The Lancet Healthy Longevity, respectively.
“Many people with Down syndrome are being failed by healthcare systems that were not designed around their needs, experiences, or long-term wellbeing. They are often left vulnerable to unmet healthcare needs and social isolation,” says lead researcher, Prof Tracey Smythe of the Division of Physiotherapy in the Faculty of Medicine and Health Sciences at SU.
“People with Down syndrome are also frequently excluded from conversations about their own healthcare, particularly during adolescence, adulthood, transition to adult care, reproductive healthcare, dementia care, and end-of-life decision-making. Families lose coordinated support almost overnight, leaving them to carry the burden of navigating healthcare systems themselves.”
Smythe notes that these problems are not only medical but also relational and systemic.
“Healthcare systems often break down during key life transitions, especially the move from paediatric to adult services. Too often, healthcare still focuses narrowly on deficits, conditions, and crises, rather than on supporting people with Down syndrome to thrive throughout their lives.
“Our studies focused on how healthcare systems can support communication, autonomy, identity, participation, healthy development, and quality of life of people with Down syndrome.
“That shift is important because it changes the conversation from ‘How do we manage Down syndrome?’ to ‘How do we build healthcare systems where people with Down syndrome can thrive?’”.
Smythe and her fellow researchers identified practical ways to support people with Down syndrome. They can be supported through multidisciplinary clinics, early intervention programmes, supported decision-making, accessible communication tools, annual health checks, rehabilitation and healthy ageing supports, and healthcare professionals trained in respectful and disability-informed care.
“Importantly, we found that small changes in healthcare interactions can have large effects. Longer appointments, visual supports, familiar routines, and clinicians who take time to build trust all improve healthcare experiences and outcomes for children, young people and adults with Down syndrome,” Smythe explains.
According to her, the two studies also highlight the importance of being listened to, being included in decisions, having healthcare explained in accessible ways, and being seen as a person first, not just a diagnosis.
By incorporating the voices and lived experiences of people with Down syndrome and their families, the two studies moved beyond traditional medical research approaches that often speak about people with Down syndrome rather than with them.
“We worked directly with people with Down syndrome, their families and caregivers, advocacy organisations, and clinicians to understand healthcare from the perspective of those living it every day.”
Smythe says that their findings challenge longstanding assumptions about Down syndrome and healthcare.
“Historically, research and healthcare have often focused on limitations, deficits, or survival. Our studies show that this approach is incomplete. People with Down syndrome are living longer, and many health inequalities they experience are avoidable.
“The evidence shows that health outcomes improve when healthcare systems support autonomy, communication, relationships, and long-term wellbeing, not just medical treatment.”
The studies also demonstrate why lived experience matters in research, Smythe adds.
“By directly engaging people with Down syndrome and families, we were able to identify barriers that traditional clinical data alone would miss, including fear, exclusion, stigma, exhaustion from navigating systems, and the emotional impact of poor communication.
“Just as importantly, people with Down syndrome also showed us what good healthcare feels like: trust, dignity, continuity, kindness, and being treated as an active participant in decisions about their own life.”
Smythe and her fellow researchers call for a fundamental shift in how healthcare systems approach Down syndrome across the lifespan.
“Healthcare systems need to move beyond fragmented, reactive models of care and instead build coordinated, inclusive systems that support people with Down syndrome from infancy through older adulthood.
“That includes integrating Down syndrome-specific training into healthcare education, strengthening transition planning into adult services, improving communication and supported decision-making, expanding preventative healthcare and rehabilitation, and designing services in partnership with people with Down syndrome and families themselves.”
The researchers also emphasise the importance of co-production and inclusion of people with Down syndrome in healthcare policy and research.
“Inclusion is not an optional extra in healthcare. It is central to improving health, quality of life, autonomy, and healthy ageing for people with Down syndrome worldwide.”
Sources: Smythe T, Moyo-Chilufya M, Wilbur J, Greenland K, Engelbrecht A, Kumar M, Hlyva O, Kuper H, Corcoran E (2026). “Advancing healthcare access to optimise health and quality of life for children and young people with Down syndrome worldwide.” The Lancet Child & Adolescent Health.
Greenland K, Nguweneza A, Wilbur J, Moyo-Chilufya M, Hlyva O, Tuffrey-Wijne I, Kuper H, Corcoran E, Smythe T (2026). “Strengthening healthcare pathways for people with Down syndrome”. The Lancet Healthy Longevity.
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