The study, published in the Journal of the American Academy of Child and Adolescent Psychiatry, followed-up parents of autistic children during the 2020 COVID-19 lockdown to investigate the longer-term effects of the intervention that was first delivered pre-pandemic .

Predictive Parenting provides parents with information about autism and combines it with hands-on, active skills training to help them better understand and manage common co-occurring difficult emotions and behaviour.

Researchers conducted follow-up questionnaires and interviews with 49 parents of autistic children who participated in the Autism Spectrum Treatment and Resilience (ASTAR) pilot trial in 2017-18. Parents were randomly assigned to receive either the Predictive Parenting intervention or Psychoeducation (information about autism and signposting to resources without specific guidance on managing emotions or behaviour).

Parents who received Predictive Parenting reported a significant reduction in child irritability and parenting stress during the COVID-19 pandemic, two years after the intervention. In contrast, child irritability and parenting stress reported by those who received Psychoeducation had returned to pre-intervention levels two years later. The findings show that Predictive Parenting may be a viable intervention to support children with autism and their families.

Dr Melanie Palmer, Research Associate at King’s and the study’s joint first author with Leno, said,

“Our study shows that Predictive Parenting provided families with useful tools that were effective two years later during the unprecedented circumstances of the pandemic.”

In the follow-up questionnaires and interviews, parents shared positive feedback on both interventions and reported utilising strategies from Predictive Parenting during the COVID-19 lockdowns.

The findings suggest that Predictive Parenting may have a positive impact on child behaviour and parenting stress in the longer-term. The strategies taught in Predictive Parenting may be particularly beneficial during periods of uncertainty and stress such as the COVID-19 pandemic, as it aimed to help parents promote predictability. It is also noted that during the COVID-19 lockdowns, parents and children spent more time together so using strategies during this time may have had greater impact.

Professor Emily Simonoff, Interim Director of the King’s Maudsley Partnership for Children and Young People’s Mental Health and senior author on the paper, said: “Our initial pilot trial, which was completed two years before the pandemic began, showed favourable but not statistically significant outcomes for those parents in Predictive Parenting in comparison to Psychoeducation immediately after the intervention was completed. The findings of this follow-up study are welcome as any beneficial effects of many interventions tend to erode over time. Here we found increasing benefits at follow-up which suggests that some families need time to embed new strategies into their home routine for this to translate to improvements in child behaviour. This is a promising intervention for some of the most common co-occurring problems experienced by parents of autistic children. Now, we want to confirm our findings in a large-scale clinical trial.”

A parent who participated in the study said: “Trying to break down why they’re doing something has been really helpful. Before I would be stressed out because I don’t understand [his behaviour]. Now I take a step back and think ‘OK, why is he doing this?’. Then from there I can react a bit better. I have more patience and can figure out, ‘OK is it attention?’, then I need to spend some time with him. It has helped a lot.”

Another parent said: “There was just a single route that she wanted to take [to school]. One of the specific successes for me was I started introducing slight differences in route and that worked. When we were home during the lockdown and even subsequently, we used to go for walks and it was good to see that she continued saying ‘let’s explore a new route’. So that has been a very positive thing.”

The study was led by researchers at the IoPPN and involved clinicians from South London and Maudsley NHS Foundation Trust and the Newcomen Centre at the Evelina Children’s Hospital. It was funded by the National Institute for Health and Care Research (NIHR) with additional support from the Maudsley Charity. Professor Emily Simonoff and Professor Andrew Pickles (another co-author) are supported by the NIHR Maudsley Biomedical Research Centre and are NIHR Senior Investigators.

‘Effects of a parenting intervention for emotional and behavioral problems in young autistic children under conditions of enhanced uncertainty: Two-year follow-up of a pilot randomized controlled trial cohort (ASTAR) during the UK COVID-19 pandemic’ (Melanie Palmer, Virginia Carter Leno, Victoria Hallett, Joanne Mueller, Lauren Breese, Andrew Pickles, Vicky Slonims, Stephen Scott, Tony Charman, Emily Simonoff) was published in the Journal of the American Academy of Child and Adolescent Psychiatry (DOI:10.1016/j.jaac.2022.09.436).

For more information, please contact Patrick O’Brien (Senior Media Officer).

The paper, published today in Frontiers in Psychiatry, lays out four core elements to facilitate regulated, confidential access for researchers to social media data in order to make long-term progress toward improved public mental health.

Social media data offers unique insights into the details of a user’s online activities. Currently, ‘enhancing user experience’ is the main factor that social media platforms apply in determining if access to data is granted. However, accredited researchers’ use of social media platform data does not usually improve user experience in the commercial sense, rather it has the potential for wider public health benefits. As a result, researchers rely either on self-reported social media use (which is not accurate) or on study participants requesting a copy of their own social media data and providing this to researchers in a non-user-friendly way.

Access to social media data will help researchers understand the interactions and perceptions of users and provide insight into mental health and wellbeing. The new framework, developed in collaboration with a lived experience advisor, psychiatrists and researchers, proposes four core elements to facilitate secure and regulated researcher access to data:

1. 1. Determining research need: Qualified researchers at accredited universities intending to use social media data to understand and improve young people’s mental health should co-produce their research with patients, carers and members of the public to justify the rationale for data access.
   2. Ethical approval and informed consent: Participants should always be empowered to understand why and how their data will be used for research. This should be in accessible formats which service user groups co-produce with researchers.
   3. Data access and analysis: Robust data management guidelines and well-defined accountability of individual institutions should be established. Having a trained service user group with lived experience involved in data analysis can realign researchers’ misinterpretations and challenge the ways in which findings are reported.
   4. Open dissemination: It is recommended for peer review to be conducted before data collection and public dissemination, emphasising the importance of the research question and the quality of methodology. Lived experience advisers or service user researchers should be included in the creation of any documents, briefings and research papers arising from the research to promote accessibility, transparency and collaboration for the public and academic community.

Co-production with user and stakeholder groups is the cross-cutting theme incorporated into each of the four elements. Researchers should work collaboratively with those with lived experience, carers and members of the public to first identify the research priorities and then co-produce research protocols and methods.

Proposed framework to facilitate regulated, confidential access for researchers to social media data to investigate young people’s mental health.

This work was supported by UK Research and Innovation (UKRI), Medical Research Foundation, Medical Research Council and the National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre.

‘Maximizing the positive and minimizing the negative: Social media data to study youth mental health with informed consent‘ (Daniel Leightley, Amanda Bye, Ben Carter, Kylee Trevillion, Stella Branthonne-Foster, Maria Liakata, Anthony Wood, Dennis Ougrin, Amy Orben, Tasmin Ford, Rina Dutta) was published in Frontiers in Psychiatry (DOI: 10.3389/fpsyt.2022.1096253)

For more information, please contact Franca Davenport, Communications and Engagement Manager (part-time), NIHR Maudsley Biomedical Research Centre, [email protected] Tel: +44(0) 7976 918968.