The relationship between loneliness and adverse health outcomes in young people with neurodevelopmental disorders (NDDs)

Opportunity

In Australia, rates of neurodevelopmental disorders (NDDs) such as ADHD and autism are rising [1]. People with NDDs are greatly disadvantaged because educational and relationship difficulties put them at significantly increased risk of loneliness [2,3]. Additionally, when compared with the general population they have increased risks of adverse mental and behavioural health outcomes [4]. Consequently, health care costs for people with NDDs are at least twice as high as their peers without NDDs [5].

Social isolation and loneliness are increasingly being recognised as a significant public health issue. Loneliness in adolescence is high compared with other phases of life [6], with up to 80% experiencing loneliness [7]. For 15-30% of those adolescents experiencing loneliness it can become persistent and painful [8], and in some cases chronic or pathological [9].

Loneliness increases early death by 26% [10], making it as strong a risk factor for illness and early death as smoking tobacco, obesity, sedentary lifestyles and high blood pressure. This is particularly concerning for people with NDDs due to their increased likelihood of experiencing loneliness [2,3].

While a small amount of research had previously examined the health outcomes of people with NDDs, very limited, if any, research focussed specifically on the relationship between loneliness and its adverse health effects on young people with NDDs. This study was the first that examined this contribution of loneliness to the mental and behavioural health of young people with NDDs.

Approach

Professor Houghton’s study collected data using an online survey of young people with or without NDDs.

All participants with NDDs had received a formal medical diagnosis and were recruited from existing databases including UWA Centre for Child & Adolescent Related Disorders and the Learning and Attentional Disorders Society of Western Australia database. Participants were also recruited from WA schools.

A matched sample of typically developing healthy peer participants without NDDs were recruited from government and non-government schools, various agencies and through the general community.

An online survey was developed based on internationally validated tools [11] including the Beck Depression Inventory, one of the most widely used psychometric tests for measuring the severity of depression. Importantly, the survey was designed to be completed in 30 minutes, which is in line with the timeframe of a regular appointment for those with NDDs and a school homeroom session for those without NDDs.

Statistical analyses and tests were used to analyse data collected. In addition to categorical classification (with NDDs v without NDDs), analyses according to dimensional features were undertaken, in line with the National Institute of Mental Health Research Domain Criteria (RDoC) strategy [12].

Impacts and Outcomes

The research generated unique and important knowledge about loneliness in young people with NDDs, developing a multi-dimensional model of loneliness. In addition, informed by the voices of young people [13], a brief, online multidimensional measure of loneliness for young people with NDDs was developed. This instrument can be used in educational and clinical research settings [11].

Key research findings include:

• Competing models [2] were tested with a four-factor model (Friendship, Isolation, Positive Attitude to Solitude, Negative Attitude to Solitude) providing best fit.
• Those with NDDs scored higher than those without NDDS on all four loneliness variables but no significant multivariate main effect was evident.
• Further research is warranted with larger and more diverse samples.

The research addressed a critical gap in the literature by providing valuable insights into the experience of loneliness among young people with neurodevelopmental disorders (NDDs). It highlighted the disproportionately greater impact of loneliness on this group compared to their typically developing, healthy peers without NDDs. Furthermore, the study explored the relationships between loneliness and preventable chronic health conditions within this disadvantaged population, shedding light on the broader implications for mental and behavioral health. These findings offer crucial guidance for developing future strategies aimed at preventing and reducing loneliness, as well as mitigating its adverse effects on the mental and behavioral well-being of young people with NDDs.

Research findings were communicated and disseminated widely, including via:

• Four journal publications (see Reports and Journal Publications below)
• Dissemination to practitioners, policy makers and researchers, including those working in government departments and agencies, clinical and care settings, paediatrics, psychiatry, mental and behavioural health, health promotion, developmental psychology, education, loneliness, emotions and emotion regulation, research, and statistical modelling. The instrument developed has been used in numerous studies to date.
• Newsletters and materials read by families and parent support groups in metropolitan and rural WA.
• Local, national and international media coverage, particularly radio interviews with Chief Investigator Professor Stephen Houghton.

Research findings were disseminated through a range of strategic partnerships, networks, and educational platforms to maximise their reach and impact. Key collaborators included the Learning and Attentional Disorders Society of Western Australia, the Child Development Service, and networks of primary and secondary school principals and vice principals. Dissemination efforts also extended to schools and their Education Support Centres, the Western Australian school psychologists’ network, and various community stakeholders, ensuring the insights reached a broad audience of professionals and organisations dedicated to supporting young people with neurodevelopmental disorders. Additionally, the findings were integrated into postgraduate-level training programs, including the Graduate Diploma and Masters of Mental Health and Emotional Wellbeing in Education, as well as special education and pre-service teaching units at the University of Western Australia. On an international scale, the research was presented at global forums such as the International Congress of the Association of Psychology and Psychiatry for Adults and Children in Greece (2017) and the World Congress of Children and Adolescent Psychiatry in Prague (2018), further extending its influence and application.

The project built research capacity within WA:

• Delivered methodological advances with the development of a new model and measure of loneliness.
• Delivered empirical data set of loneliness in young people with NDDs.
• Increased research capacity in an area not well understood or researched.
• Built capacity of the research and education workforce.

The research fostered international partnerships and facilitated the cross-fertilisation of ideas and methodologies, strengthening global collaboration in the field. Notable partnerships were established with Professor Simon Hunter from Glasgow Caledonian University and Professor Pamela Qualter from the University of Manchester, enabling the exchange of knowledge and advancing shared research objectives. These collaborations have contributed to a broader understanding of the issues surrounding neurodevelopmental disorders and their impacts, enhancing the study's global relevance and influence.

Additionally, the research played a significant role in building research capacity among postgraduate students. It supported the completion of two Masters dissertations and provided a foundation for three postgraduate Doctoral students who are utilising the developed model and measures in their studies. The initial exploratory research grant has also paved the way for subsequent funding and expanded research opportunities. This includes support from the Young Lives Matter Foundation, the UWA Research Impact Grant, Healthway, Telethon Trust, and two prestigious grants from the Australian Research Council Discovery Scheme, further solidifying the project's impact and reach.

Professor Stephen Houghton commented, "That initial amount of funding that Healthway gave us has gathered pace all the way, and we’ve received another five competitive grants as a result of that initial funding. It allowed us to show bigger funding bodies that we had the backing of a reputable funding body, and that they had given us that funding so we could develop a framework from which we could build. It’s been an excellent springboard.

Years later, we’ve actually gone from collecting all these data and building models, to actually developing new prevention programs, to prevent the onset of loneliness and mental health problems. It’s a great example of – over time - going from theory, to model building to saying – here is a prevention program."

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What worked

The multidisciplinary team and collaboration across partner agencies was critical to the success of this highly original research project. Partnerships were developed between the University of Western Australia, the State Child Development Centre, and The Learning and Attentional Disorders Society of WA (LADS) now known as ADHD Western Australia (ADHDWA), along with key community stakeholders including the Department of Education. These partnerships ensured a robust design, recruitment of participants, and that the findings were translated to real world settings such as Government Departments and agencies, the home and family, schools, and clinical and care settings.

Key challenges

The ethics process was very complex for undertaking this study. Paediatricians in the state system were asked to provide a flyer to families of children with neurodevelopmental conditions inviting them to participate. Understandably, the Health Department has a duty of care to its clients but in the end the process was preventing the progress of the research, and so we decided to engage with community organisations such as ADHDWA (formerly LADS) who were enthusiastic about being involved in research that would make a difference and be beneficial for its members. The WA Department of Education also supported the research.

"The research was critically important in numerous ways. It highlighted the research we were undertaking and brought us to the attention of leading loneliness researchers such as Professors Luc Goossens (Belgium) and Pamela Qualter (UK).

It also led to the development of our current research team involved in developing a 3-D animated serious game about loneliness that embeds a validated therapeutic approach. This team includes world leading WA researchers such as Professors Colin MacLeod and Andrew Page along with Professor Pamela Qualter. The research has been disseminated to numerous parent and allied health professionals.

We are now validating a brief measure of loneliness which is the first to also differentiate chronic v transient loneliness, its intensity and disparity effect (this emanated from the initial research). The University of WA has cited loneliness and social isolation as one of its major research pursuits." Professor Stephen Houghton.