We talk about mental health more than ever, but the language we should use remains a vexed issue.

Should we call people who seek help patients, clients or consumers? Should we use “person-first” expressions such as person with autism or “identity-first” expressions like autistic person? Should we apply or avoid diagnostic labels?

These questions often stir up strong feelings. Some people feel that patient implies being passive and subordinate. Others think consumer is too transactional, as if seeking help is like buying a new refrigerator.

Advocates of person-first language argue people shouldn’t be defined by their conditions. Proponents of identity-first language counter that these conditions can be sources of meaning and belonging.

Avid users of diagnostic terms see them as useful descriptors. Critics worry that diagnostic labels can box people in and misrepresent their problems as pathologies.

Underlying many of these disagreements are concerns about stigma and the medicalisation of suffering. Ideally the language we use should not cast people who experience distress as defective or shameful, or frame everyday problems of living in psychiatric terms.

Our new research, published in the journal PLOS Mental Health, examines how the language of distress has evolved over nearly 80 years. Here’s what we found.

Generic terms for the class of conditions

Generic terms – such as mental illness, psychiatric disorder or psychological problem – have largely escaped attention in debates about the language of mental ill health. These terms refer to mental health conditions as a class.

Many terms are currently in circulation, each an adjective followed by a noun. Popular adjectives include mental, mental health, psychiatric and psychological, and common nouns include condition, disease, disorder, disturbance, illness, and problem. Readers can encounter every combination.

These terms and their components differ in their connotations. Disease and illness sound the most medical, whereas condition, disturbance and problem need not relate to health. Mental implies a direct contrast with physical, whereas psychiatric implicates a medical specialty.

Mental health problem, a recently emerging term, is arguably the least pathologising. It implies that something is to be solved rather than treated, makes no direct reference to medicine, and carries the positive connotations of health rather than the negative connotation of illness or disease.

Arguably, this development points to what cognitive scientist Steven Pinker calls the “euphemism treadmill”, the tendency for language to evolve new terms to escape (at least temporarily) the offensive connotations of those they replace.

English linguist Hazel Price argues that mental health has increasingly come to replace mental illness to avoid the stigma associated with that term.

How has usage changed over time?

In the PLOS Mental Health paper, we examine historical changes in the popularity of 24 generic terms: every combination of the nouns and adjectives listed above.

We explore the frequency with which each term appears from 1940 to 2019 in two massive text data sets representing books in English and diverse American English sources, respectively. The findings are very similar in both data sets.

The figure presents the relative popularity of the top ten terms in the larger data set (Google Books). The 14 least popular terms are combined into the remainder.

Several trends appear. Mental has consistently been the most popular adjective component of the generic terms. Mental health has become more popular in recent years but is still rarely used.

Among nouns, disease has become less widely used while illness has become dominant. Although disorder is the official term in psychiatric classifications, it has not been broadly adopted in public discourse.

Since 1940, mental illness has clearly become the preferred generic term. Although an assortment of alternatives have emerged, it has steadily risen in popularity.

Does it matter?

Our study documents striking shifts in the popularity of generic terms, but do these changes matter? The answer may be: not much.

One study found people think mental disorder, mental illness and mental health problem refer to essentially identical phenomena.

Other studies indicate that labelling a person as having a mental disease, mental disorder, mental health problem, mental illness or psychological disorder makes no difference to people’s attitudes toward them.

We don’t yet know if there are other implications of using different generic terms, but the evidence to date suggests they are minimal.

Is ‘distress’ any better?

Recently, some writers have promoted distress as an alternative to traditional generic terms. It lacks medical connotations and emphasises the person’s subjective experience rather than whether they fit an official diagnosis.

Distress appears 65 times in the 2022 Victorian Mental Health and Wellbeing Act, usually in the expression “mental illness or psychological distress”. By implication, distress is a broad concept akin to but not synonymous with mental ill health.

But is distress destigmatising, as it was intended to be? Apparently not. According to one study, it was more stigmatising than its alternatives. The term may turn us away from other people’s suffering by amplifying it.

So what should we call it?

Mental illness is easily the most popular generic term and its popularity has been rising. Research indicates different terms have little or no effect on stigma and some terms intended to destigmatise may backfire.

We suggest that mental illness should be embraced and the proliferation of alternative terms such as mental health problem, which breed confusion, should end.

Critics might argue mental illness imposes a medical frame. Philosopher Zsuzsanna Chappell disagrees. Illness, she argues, refers to subjective first-person experience, not to an objective, third-person pathology, like disease.

Properly understood, the concept of illness centres the individual and their connections. “When I identify my suffering as illness-like,” Chappell writes, “I wish to lay claim to a caring interpersonal relationship.”

As generic terms go, mental illness is a healthy option.

Nick Haslam, Professor of Psychology, The University of Melbourne and Naomi Baes, Researcher – Social Psychology/ Natural Language Processing, The University of Melbourne

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Neurodevelopmental conditions such as attention deficit hyperactivity disorder (ADHD) and autism affect about one in ten children. These conditions impact development, behaviour and wellbeing.

But children with these conditions and their caregivers often can’t get the support they need. Families report difficulties accessing health-care providers and experience long wait lists to receive care.

Digital tools, such as apps and websites, are often viewed as a solution to these gaps. With a single click or a download, families might be able to access information to support their child.

There are lots of digital tools available, but it’s hard to know what is and isn’t useful. Our new study evaluated freely available digital resources for child neurodevelopment and mental health to understand their quality and evidence base.

We found many resources were functional and engaging. However, resources often lacked evidence for the information provided and the claimed positive impact on children and families.

This is a common problem in the digital resource field, where the high expectations and claims of impact from digital tools to change health care have not yet been realised.

What type of resources?

Our study identified 3,435 separate resources, of which 112 (43 apps and 69 websites) met our criteria for review. These resources all claimed to provide information or supports for child neurodevelopment, mental health or wellbeing.

Resources had to be freely available, in English and have actionable information for children and families.

The most common focus was on autism, representing 17% of all resources. Resources suggested they provided strategies to promote speech, language and social development, and to support challenging behaviours.

Other common areas included language and communication (14%), and ADHD (10%).

Resources had various purposes, including journalling and providing advice, scheduling support, and delivering activities and strategies for parents. Resources delivered information interactively, with some apps organising content into structured modules.

Resources also provided options for alternative and assistive communication for people with language or communication challenges.

Most apps were functional and accessible

Our first question was about how engaging and accessible the information was. Resources that are hard to use aren’t used frequently, regardless of the information quality.

We evaluated aesthetics, including whether digital tools were easy to use and navigate, stylistically consistent, with clean and appealing graphics for users.

Most resources were rated as highly engaging, with strong accessibility and functionality.

But many lacked quality information

We ranked resources on various features from 1 (inadequate) to 5 (excellent), with a ranking of 3 considered acceptable. These ratings looked at how credible the resource was and whether there was evidence supporting it.

Despite their functionality, 37% of reviewed apps did not meet the minimum acceptable standards for information quality. This means many apps could not be recommended. Most websites fared better than apps.

There also wasn’t a lot of scientific evidence to suggest using either apps or digital resources actually helped families. Studies show long-term engagement with digital tools is rare, and downloads don’t correspond to frequent usage or benefits.

Digital tools are often viewed as a panacea to health-care gaps, but the evidence is yet to show they fill such gaps. Digital health is a fast-moving field and resources are often made available before they have been properly evaluated.

What should you look for in digital resources?

We found the highest quality resources were developed in collaboration with institutions, such as health, university or government groups.

One highly rated resource was the Raising Children’s Network and the associated app, Raising Healthy Minds. These are co-developed with a university and hospital, and by people with appropriate qualifications.

This resource provides information to support children’s overall health, development and wellbeing, with dedicated sections addressing neurodevelopmental needs and concerns.

Our research shows parents can assess whether digital resources are high quality by checking they are:

• factually correct. Look for where the app or resource is getting its information. Does the author have the qualifications and training to provide the information? Are they a registered health expert who is accountable to a regulatory body (such as AHPRA, the Australian Health Practitioners Regulation Agency) for providing information that does not cause harm?
• consistent across multiple credible sources, such as health institutions.
• linked to supporting information. Look for reliable links to reputable institutions. Links to peer-reviewed scientific journals are often helpful as those articles will also usually describe the limitations of the research presented.
• up-to-date. Apps should be frequently updated. For websites, dates of update are usually found on the homepage or at the bottom of individual pages.

Beware of red flags

Some things to watch out for are:

• testimonials and anecdotes without evidence and scientific links to back the anecdotes up. If it sounds too good to be true, it probably is.
• no information provided about conflicts of interest. Organisations gain when you click on their links or take their advice (financial, reputation and brand development). Think about what they gain when you use their information to help keep a balanced perspective.

Remember, the app’s star rating doesn’t mean it will contain factual information from a reliable source or be helpful for you and your child.

The role of digital tools

Digital tools won’t usually replace a health professional, but they can support care in many different ways. They may be used to help to educate and prepare for meetings, and to collaborate with health providers.

They may also be used to collect information about daily needs. Studies show reporting on sleep in children can be notoriously difficult, for example. But tracking sleep behaviour with actigraphy, where movement and activity patterns are measured using a wearable device, can provide information to support clinical care. With the promise of artificial intelligence, there will also be new opportunities to support daily living.

Our findings reflect a broader problem for digital health, however. Much investment is often made in developing products to drive use, with spurious claims of health benefits.

What’s needed is a system that prioritises the funding, implementation and evaluation of tools to demonstrate benefits for families. Only then may we realise the potential of digital tools to benefit those who use them.

Kelsie Boulton, Senior Research Fellow in Child Neurodevelopment, Brain and Mind Centre, University of Sydney and Adam Guastella, Professor and Clinical Psychologist, Michael Crouch Chair in Child and Youth Mental Health, University of Sydney

This article is republished from The Conversation under a Creative Commons license. Read the original article.