A longitudinal study of children with autism spectrum disorder from across Canada has shown that “doing well” is possible — even in the context of continuing to meet diagnostic criteria for the disorder. The Pathways study has been following children since they were first diagnosed — known as an inception cohort — and now is tracking children into their teens.
“These results support a strengths-based approach to treatment planning that should include robust support for children and youth and families to increase the likelihood of doing well,” the study concluded.
The paper was published March 29/21 in the Journal of the American Medical Association Open. Peter Szatmari from the University of Toronto is lead author. Charlotte Waddell, director of the Children’s Health Policy Centre, is also an author. She is a longstanding co-investigator with the team.
The paper can be viewed here.
Recently invited to deliver an international seminar about the British Columbia Healthy Connections Project, scientific director Dr. Nicole Catherine spoke to a group of researchers, policymakers and practitioners from around the world. Catherine began by describing the sustained research-policy-practitioner collaborations that support the 10-year Canadian scientific study of the Nurse Family Partnership (NFP) that is being conducted in BC in four Regional Health Authorities.
NFP was developed nearly 40 years ago by Dr. David Olds and colleagues in the United States, to help girls and young women and their children who are facing disadvantages such as low income. The program starts early — in pregnancy, before children are even born — and involves intensive home visits by public health nurses, continuing until children reach their second birthday.
The study is what Catherine described as a “robust” size, with 739 participants and their 727 children, with 200 of these mothers identifying as Indigenous. An analysis of participant characteristics at study entry, in early pregnancy, was published in 2019 showing that the trial reached pregnant girls and young women experiencing socioeconomic disadvantage (i.e., young age, preparing to parent while single, having limited income, having limited education).
Many (47–56%) had associated health and social adversities including unstable housing, a history of childhood maltreatment, or severe anxiety or depression. In fact, 90% were experiencing three or more adversities. “Our data show unacceptable rates of socioeconomic disadvantage for some BC girls and young women who are preparing to parent for the first time,” Catherine told the group. “NFP was designed to support these children and these young mothers.”
While the research interviews were completed in November 2019, analysis is continuing. Main outcome results showing how well NFP works in BC are expected to be announced in 2021/2022. In the meantime, two findings have already been identified.
- Prenatal findings published in the academic journal, Canadian Medical Association Journal Open suggest that NFP reduced the number of cigarettes smoked, for pregnant smokers — which is important, given that even low-level cigarette smoking is harmful to a fetus. NFP also reduced prenatal cannabis use, an emerging public health problem.
- The BC Healthy Connections Project achieved an outstanding participant retention rate (83%–91%) for the six research interviews conducted with each family starting in pregnancy and through until children reached aged two years. The study team successfully completed 4,000 in-person and telephone interviews over six years. This was especially encouraging, Catherine said, because girls and young women experiencing considerable disadvantage are often considered “hard-to-reach” by researchers and practitioners. The study team’s development and use of a standardized retention protocol helped them engage and retain this underserved population. “The onus is on us,” says Catherine. “It’s not that these families are ‘hard-to-reach’— it’s that we ‘need-to-reach’ them.”
The seminar was followed by a conversation with researchers, policymakers and practitioners in various countries around the globe currently considering, evaluating or implementing NFP. This list included Australia, Bulgaria, England, Northern Ireland, United States, Norway and Scotland. Videos from all presenters may be viewed here; Catherine’s presentation is third on the list.
Recently invited to deliver a Lager Lecture at McMaster University, Children’s Health Policy Director Charlotte Waddell spoke on Children’s Mental Health and COVID-19.
Speaking via Zoom on Feb. 24, Waddell began by describing the high level of children’s mental health needs prior to the pandemic.
Following the pandemic, she said, it’s expected that prolonged disruptions and diverted public resources will lead to additional hardships. Worldwide, somewhere between 42 and 46 million more children are expected to fall into extreme poverty with reduced access to basic healthcare, food and vaccines.
As well, she noted, school closures imposed by nearly 200 countries have affected 85 per cent — or 1.4 billion children — worldwide.
Citing a 2020 conclusion from the United Nations Waddell said, “Children are not the face of this pandemic but they risk being among its biggest victims.” It will be most damaging for those who are already experiencing the most disadvantage, she added.
Addressing the issue of cost, Waddell pointed out that 94 percent of provincial health budgets in Canada go to hospitals, drugs and physicians while only six percent goes to public health, including prevention.
“That low figure towards public health gives us a couple of clues about why we’ve had to scramble to respond to COVID,” she said — arguing that where government is prepared to spend more money on public health, it can realize great savings. In the US, for example, preventing just one case of a severe childhood problem such as conduct disorder can yield savings of more than $8 million CAD over a lifetime.
Waddell was invited to give the speech as a recent inductee to McMaster University’s Alumni Gallery. Waddell earned her MD from McMaster where she completed residencies in Family Medicine and Psychiatry. In 2006, she was recruited by SFU to take up the Canada Research Chair in Children’s Health Policy, Tier 2, and to become director of the Children’s Health Policy Centre.
The roughly 30-minute speech was followed by a lively question and answer session. The whole video may be viewed here.
Children are not the immediate face of COVID-19, but they are the face of its future.
That is the key message of a recent article in the Globe and Mail newspaper, co-authored by Children’s Health Policy director Charlotte Waddell.
Written with senior academics from McMaster University, the Toronto Hospital for Sick Children and the University of Ottawa, the piece argues that unlike other countries, Canada does not have a national long-term study of children and youth. The need for such evidence on childhood health and well-being was urgent before COVID-19 and is even more urgent now.
But there is also some coincidental good news. Statistics Canada conducted a survey on children and youth in 2019, which means there are pre-pandemic data about how children were doing before COVID-19. (This survey involved a nationally, representative sample of more than 42,000 children aged 1 to 17 years across the country.)
The article argues that, “investing in a comprehensive follow-up survey represents our best opportunity to obtain accurate information about how the pandemic is affecting all Canadian children, and how some are being disproportionately affected.”
Such a follow up survey would also create a unique opportunity to assess how COVID-19′s impact may have differed across provinces and territories. As a result, it could also assess the impact of various public health and policy responses.