Reflections
Profile
Cristina Slate
For more on COVID-19 and
orphanhood see Articles
Lancet 2021; 398: 391–402
For the INSPIRE package see
https://www.who.int/teams/
social-determinants-of-health/
violence-prevention/inspire-
technical-package
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Susan Hillis: inspiring hope for children
In May, 2020, Susan Hillis received an unsettling call from
the director of a faith-based organisation in Zambia. He
told her he was very worried about the grandmothers
who care for the country’s AIDS orphans dying from
COVID-19. “I was rather speechless and agreed with him
it would be a horrible problem and that I certainly hoped
it didn’t happen”, Hillis recalls. Afterwards, she struggled
to sleep because she knew mortality associated with
COVID-19 was primarily in adults and the impact on
parents and grandparents was unknown but probably
large. But she also realised that with the right team, she
could adapt existing AIDS orphanhood models to “at
least generate minimum estimates of children affected by
COVID-associated orphanhood”. The result was Hillis and
colleagues’ seminal 2021 paper in The Lancet showing that
1∙5 million children could be affected by parent orphanhood
or caregiver death from COVID-19. The findings, and the
group’s subsequent papers, have led to policy responses
in multiple countries “which is exactly what we want, and
we’re hoping that continues to expand”, she says.
Hillis is Senior Technical Advisor at the President’s
Emergency Plan for AIDS Relief (PEPFAR), and Senior
Research Fellow and co-chair of the Global Reference
Group on Children Affected by COVID-19 at the University
of Oxford, Oxford, UK. Prior to these roles, she had an
illustrious 30-year career at the US Centers for Disease
Control and Prevention (CDC). Her research focuses on
the population-level impact of violence against children,
adverse childhood experiences, and orphanhood,
particularly in relation to HIV, Ebola, COVID-19, and
adolescent pregnancy risk.
Born in the US state of South Carolina, Hillis grew up
with a father and a mother who worked in the US Army.
Although her parents were strong and positive, Hillis
witnessed conflict between the two, which influenced
her research interest in adverse childhood experiences.
Later in life, a tragic accident deeply affected her and
her family. Hillis’ oldest son was killed on a family bike
ride the day before his tenth birthday. “That was just so
traumatic and heart-wrenching”, she recalls. But through
the grief, Hillis and her husband came to realise that
as parents bereaved of a child, they were able to have
empathy for children bereaved of their parents. So, they
began adopting older children. Although it was never their
original intention to adopt many children, they ended
up adopting eight children from institutions in Russia.
Along with their two remaining biological children, Hillis
and her husband are parents to ten children and now
grandparents to 20. “My husband and I both have deep
faith, and we did feel that it was part of the purpose for our
lives”, she reflects. When adopting her first two children,
she was struck by seeing many “children’s hands hanging
on a chain-link fence and their faces peering through…I
realised in a very shocking way then that the long-term
consequences of children who grew up outside of family
care are extreme”. It became “part of my internal fabric and
something I really cared about because not only had I seen
the consequences professionally, I had seen it personally.
I’ve also seen the difference it makes if children have safe,
stable, and nurturing relationships and environments to
help ameliorate some of those difficulties and adversities to
build resilience and hope”, she says.
Hillis has an undergraduate degree in nursing and a
masters in public health and has taught these subjects
to undergraduates in Colombia for several years. But
she came back to the USA with her family after a heart
condition was detected in one of her children. Workwise,
“I had no idea what I was going to do…but my passion for
a long time had been epidemiology”, she says. She got
support to do a PhD in epidemiology from the University
of North Carolina at Chapel Hill, NC, USA, after which she
started her CDC career in 1991. Now, at the University of
Oxford, she works on the effect of poly-crises on children.
“The impact of COVID-19 contagion, conflict, and climate
disasters on children have many similar pathways”, she
explains. She is investigating emergency hybrid responses
that integrate evidence-based parenting interventions
with economic and school support. With colleagues, she is
also increasingly working on methodologies to generate
estimates for cause-specific orphanhood. “For the child,
it doesn’t really matter whether their parent died from
COVID-19, it matters whether their parent died.” At
PEPFAR, she provides technical assistance to countries on
evidence-based HIV/AIDS programmes that they could
sustainably invest in, adapt, and implement.
In 2016, data analysed by Hillis and colleagues revealed
that each year more than one billion children experience
serious violence or physical, sexual, or emotional abuse
each year. Hillis is proud of that work. “It was linked
immediately to evidence-based approaches launched at
the same time on how to prevent that violence against
children.” Hillis co-authored with WHO colleagues the
evidence-based package called INSPIRE, which has been
translated into 13 languages and is widely used. “It’s not
really my interest to just publish a problem”, Hillis notes.
“My intent is always to publish on a problem so that you
link it to a solution that begins to be implemented broadly
around the world.”
Udani Samarasekera
www.thelancet.com/child-adolescent Vol 7 September 2023