Parental stress and traumatic life events in families with children with neurodevelopmental disorders (NDDs)

You are a psychologist and now a PhD student, what made you want to become a researcher?

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- After graduating in psychology, I worked as intern psychologist, a year-long position that is divided between clinical activities and research. Prior to this, research had felt very distant to me, I had it in mind to only work clinically. I was quite surprised at how much fun it was to carry out research, and since then it has felt natural to continue! The combination of research and clinical work suits me perfectly, it helps me find relevant issues and also makes it easier to implement results from research in clinical everyday life. 

What is your thesis about and how did you end up studying this issue specifically?

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- My doctoral project is entitled "Parental stress and traumatic life events in families with children with neurodevelopmental disorders (NDDs)". In previous research, parents of children with NDDs have been shown to experience high levels of parental stress and parental stress has in turn been shown to affect both parenthood and the interaction between parent and child. Previous studies have also demonstrated that behavioural problems, which are often seen in NDDs, mean increased stress on the family. At group level, several studies also describe an increased incidence of traumatic life events in children with NDDs, which increases the risk of mental and physical illness in both the short- and long-term. What I am trying to answer in my project is whether there is a connection between parental stress, parenting methods and traumatic life events in families with children with NDDs.

- When one works in child psychiatry, it becomes clear that a a high level of parental stress exists in parents of children with NDDs, but it also becomes apparent that there is a lack of knowledge regarding how we can support the families who are suffering. Early detection and early intervention likely make a difference, but we need to know more about the connection between different types of difficulties and we need to become better at reaching out to the families who need support.

You have published your first paper in the Nordic Journal of Psychiatry. Can you give us a brief summary of what it was about and your findings?

- My first article, “Anxiety and depression in adolescents with ADHD and autism spectrum disorder; correlation between parent- and self-reports and with attention and adaptive functioning,"  was published in 2017. The study included young people with an ADHD and / or autism diagnosis who answered questions about anxiety and depression, and performed a computerized attention test. The parents of the adolescents also participated by answering questions about the adolescents’ mental state, as well as about adaptive abilities. We found that about a third of adolescents reported high levels of anxiety and depression, which was not always reflected in the parents' report.

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- The study showed that clinicians need to be aware of the high prevalence of anxiety and depression in children and adolescents with ADHD or autism. We also found a need to use several sources to assess the mood and function of young people, as each informant can provide different but valuable information. However, anxiety or depression does not seem to affect the results of computerized attention tests, which indicates that investigation of ADHD is possible despite symptoms of anxiety or depression.

What are you studying at the moment?

- Just now I am finishing my data collection and hope that I can soon start writing the first part of the dissertation, which will focus on whether there is a connection between parental stress and the child's function, and if parental stress differs across different diagnostic groups.

What’s been the highlight of your research career so far?

- It's hard to choose just one! It was great when my first article was published, there is so much work and toil behind it. I still have the biggest highlights in front of me, the biggest is of course the dissertation itself. I am looking forward to it!

Have you experienced any challenging moments during your PhD studies? If so, what have they been?

- One thing that has surprised me with my doctoral studies is that I notice that I get quite affected even when smaller things go wrong - the research has come very close to me emotionally. I have learned that many things in research take much, much longer than I thought. Sometimes it has felt like I never get ahead, because the schedule has had to be changed time and time again. At the same time, I understand that this is how research is. A while ago, a colleague said that she tries to shrug her shoulders and think "it's a part of doing research" every time something goes wrong, and I try to follow that.

What have you enjoyed the most about being a PhD student?

- There are so many things that are enjoyable about being a doctoral student! I think it's fantastic to have the opportunity to focus on my project and it feels incredibly meaningful to meet all the families who share their experiences. I also think that we have a wonderful community at the Gillberg Neuropsychiatry Centre and I am very grateful that I got to take part in so many interesting discussions with my research colleagues. 

Looking far ahead into the future, what would be the next research topic for you?

- I would think it would be highly interesting to continue researching factors that affect family functioning in families with children with NDDs and perhaps focus more on treatment interventions. The data we have collected so far has provided us with many thoughts and reflections on how support measures could be developed. We'll see what the future has in store for me!