The Agency projects also share what good practice looks like when mental health practitioners support young people.
For the last five years we’ve been part of a multi-disciplinary team of researchers looking at two consecutive, UKRI-funded research projects – Agency and Agency-in-practice – examining and discussing young people’s experiences of seeking help for mental health issues.
The team, made up of young people with lived experience of mental health issues, psychologists, psychiatrists, and philosophers, focused on the theme of young people needing ‘agency’ around their mental health treatment and journey.
Giving young people agency in mental health
This involved understanding how mental health professionals can act to support or prevent young people from feeling and being understood when they seek help.
They also looked at how young people’s sense of agency may be encouraged or obstructed during a clinical encounter, and how these communicative actions might subsequently affect young people’s engagement with mental health services.
What is epistemic injustice in this context?
We explored the notion of epistemic injustice in the context of clinical encounters, where it’s entwined with other aspects of inequality and power.
In all interactions where one party has more authority or power than the other party, there’s a risk the contribution of the ‘less authoritative’ party is not sought or is undervalued.
What epistemic injustice did we see?
We noticed important differences between young people’s experiences of being seen for a generic, risk-focused, ‘gateway’ assessment (in the A&E data) and their experiences of being seen by a specialist, recovery-focused, outreach service (in the Early Intervention Program data).
In the former, professionals’ interactions with young people were more often characterised by communications which introduced or perpetuated epistemic injustices, as a means of steering the young people away from professional support.
We saw examples where professionals lacked curiosity about young people’s distress, and failed to invite them to elaborate on how they felt.
We also saw examples where young people were denied further support, or discouraged from pursuing it, because professionals blamed them for the current dip in their mental health; for example, when they hadn’t complied with a previous treatment plan, had self-medicated with drugs or alcohol, or had been unable to make use of other sources of support.
The blame placed on young people often failed to acknowledge important information which the young people had tried to share about why they had been struggling with these issues, such as bereavement, abuse, or fear for their safety.
We saw examples where practitioners minimised difficulties that a young person shared, rather than pointing out the severity of their challenges.
Young people were told that they actually seemed to be ‘fine’, since they were able to attend university a few days after seriously considering a suicide attempt, or because they had plans to attend a party, or had a supportive partner at home.
Sometimes this minimisation was underscored by inappropriate uses of humour (‘I bet you wish you hadn’t come here now’), or by speaking to young people in condescending tones.
We also saw examples of practitioners not giving young people enough explanation of potential treatments, or to explore their concerns around it, and where professionals dismissed young people’s emotions, whether by tone of voice, body language or their words.
In all of the above cases, knowledge and insight brought to the consultation by the young person was excluded from it, and to their detriment.
See more examples that were found in the paper, which is now on the World Health Organisation website.
Why is agency important?
Knowledge – about oneself, and about mental health – is key to good mental health, especially when someone becomes unwell and needs to seek help.
When young people respond to these initiatives by acting on their mental health knowledge, to seek help, and share their worries, it is obviously important that they receive an appropriate response.
When they treated as if their experiences do not matter and their perspectives do not count, this undermines mutual trust and knowledge exchange, and reduces the likelihood they will seek help again in the future.
Everyone is an expert in their own experiences but the studies found that young people are not being recognised as such. Feeling that their views do not count may discourage them from sharing information, and from opening up about what has been troubling them.
Mutual understanding and trust are important for joint action. Mental healthcare is most likely to be experienced as helpful (and humane) when it is provided collaboratively, rather than coercively.
The importance of positive, supportive communication
The Agency studies concluded that fair and successful interactions with mental healthcare professionals seek to understand young people’s distress, and its context, and to incorporate young people’s knowledge into a form of care which supports their agency, without blaming them.
It came up with the ‘Agential Stance’, five key steps to help promote and protect the young person’s sense of agency during the interaction: Validation; legitimisation; not objectifying; affirming the ability to create change; involving in decisions.
The stance can be imagined as a ladder, with each of the five points building on the previous ones.
This was seen in more successful interactions across the project where, for example, we saw empathy in the professionals. Good practice validated the young person’s emotions and recognised that their mental health issues were ‘worth’ being taken seriously.
Practitioners listened actively and demonstrated an understanding of the severity of the issues faced by young people through small comments, such as “I’m so sorry you experienced that”.
Supportive and empathetic practice extended to body language and other appropriate ways to show that they were listening and paying attention, such as with open body language and not speaking over the young people.
Professionals who needed to communicate with each other during the interaction did so explicitly, and also communicated to the young person beforehand what was happening and why. This created a space where the young person felt they were being listened to, and that they could talk about their experiences without judgement.
Consistent care is key
Young people also shared examples of good practice which included providing consistent care, where professionals kept showing up, demonstrating their trustworthiness, and being patient, sometimes repeating the offer of support to give young people time to process.
Being curious about was important to the young person, and then acting on it to help the young person to meet those needs, was also important.
In these instances, good practice was supportive and guiding, but it consistently encouraged the young person to exercise greater agency as their recovery progressed, with the aim of leaving them confident to continue without the support in the longer term.
McPin Public Involvement in Research Manager (Youth Involvement Lead) Rachel Temple said:
“The work we have done on young people’s agency and epistemic justice has shown that, unsurprisingly, some mental health services for young people are simply not up to scratch.
“There are small changes that can be made which can go a long way to improving the young person’s support experience.
“By adopting the ‘agential stance’ in their practice, mental health professionals can greatly improve their interactions with young people.
“We’ve worked with our YPAG every step of the way on this, who have drawn on their (both positive and negative) experiences of accessing mental health support to refine our approach.”
Throughout the study we have co-authored two research papers, and two book chapters; we have hosted webinars for researchers, school-aged children and mental health professionals; we have run in-person workshops; and we have given talks to academic conferences.
Read more about the Agency project here:
