Views & Opinion ‘Nothing about us, without us’ - developing
inclusive trauma informed practice Comment by Dr LEANNE JOHNSON, Consultant Clinical Psychologist and Head of Trauma Informed Practice (TIP), Outcomes First Group
The World Health Organisation Declaration of Alma-Alta (1978) states that ‘
..people have a right and duty to participate individually and collectively in the planning and implementation of their health care.’ I strongly believe that the voices of those with lived experience of trauma, should have a pivotal role in developing effective inclusive trauma informed practice to support young people in neurodiverse and social, emotional and mental health (SEMH) settings. We need to empower participation from those with lived experience to increase our understanding, knowledge and cultural approach. No strategy should be created without the full and direct participation of members of the group that will be impacted by it. With the help of the Outcomes First Group, Lived Experience Expert Group (LEE Group) - incorporating individuals of all ages with direct lived experience of trauma, as well as their families -we develop core, clinically informed strategies.
The LEE Group help shape and inform the development of inclusive trauma informed practice within our services. It meets quarterly for 2 hours, with an agenda to support individuals to achieve their very best outcomes, through contributing towards the development of policy, procedure and practice within OFG’s specialist schools and residential services. Inclusive involvement is suited to each member. Some attend meetings, others meet on a 1:1 basis to contribute to the wider group, or offer thoughts and opinions on draft documentation.
‘Nothing about us, without us’
The creation of the LEE Group benefited the development of our education and care provision by: • increasing transparency in the services we are developing and delivering
• acknowledging people’s capacity for self-determination and placing them in a position of power in the planning of their own or loved ones’ care
• bringing fresh and different perspectives to those professionals working with them
• increasing the divergence of knowledge, potentially leading to more accessible, creative and innovative developments.
As part of our qualitative research, we asked the members of the LEE Group, ‘What made, or what could have made, a difference during your lived experience of trauma?’ Together we have created top TIP tips to help further embed our TIP strategy.
Observing and interpreting behaviour
Behaviour is communication, but when you are witnessing behaviour, what is it saying? • Am I safe? • Am I loved? • Do I matter? • I feel sad / scared / hungry / tired / overwhelmed. • I can’t communicate any other way. • I feel overstimulated. • I need understanding or help!
Always ask the question ‘why’ about a behaviour so you can delve deeper. Understanding the ways children have learned to manage and survive early trauma, gives us cues to their underlying needs.
Consider what you see and hear in a wider context Language has the power to place blame on a person and further reinforce a negative self-concept – ‘I’m bad and unlovable’. Think about the wider context to find solutions: • ‘She’s trying to manipulate everyone’… she wasn’t helped to
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soothe her feelings when she was young, so she doesn’t know how to do this now
• ‘She’s so lazy’… she’s having a hard time at home and needs time and extra support.
• ‘He’s attention seeking’… his brain is in fight/flight/freeze mode - he is distressed, overwhelmed and doesn’t know how to manage.
Language use Use person-first language
A child’s experience of trauma is only one part of their identity and does not define them. Place the individual before their trauma - ‘a person who has experienced trauma’ rather than ‘a trauma survivor’. Avoid blaming language
This can be triggering. Focus on empathy and support. Rather than saying, ‘What’s wrong with you?’ ask, ‘How can I help you?’ This validates their feelings and experiences, while emphasizing your willingness to support them. Separate the problem from the child
It is important the problem is not perceived as the child - ‘I’m bad’ – so use descriptors to externalise it - ‘the bad feeling’. This reduces shame and encourages reflection and exploration of new perspectives: ‘When do you notice the bad feeling?’ ‘Tell me more about the bad feeling.’ Provide choice
Trauma experiences can feel very unpredictable and out of control – providing choice empowers the child and promotes a sense of agency, by allowing them to choose what feels most comfortable. Non-verbal Communication
Research suggests that as much as 70-93% of the impact of communication can be attributed to non-verbal cues. Those with lived experience of trauma are even more astute to possible signs of danger, so it’s crucial to be attuned to non-verbal cues - body language, facial expressions and gesture. To help create a sense of safety, maintain an open and non-threatening body posture, be aware of physical distance and boundaries, and adopt a kind facial expression. The use of ‘pACE - playfulness, acceptance, curiosity and empathy’ (Dan Hughes) and ensuring individual’s feel heard is key. Using the ‘right’ words and language is not straightforward. Even if we mean well, we can say words that might be experienced as insensitive, or at worse offensive. Language and terminology are always evolving in response to experience, culture and society. Below are some suggestions for important strengths-based language changes from previous ‘labels’ that have negative connotations:
Attention seeking: needing comfort/attachment; connection seeking; need to feel seen. Defiant/oppositional: finding it hard to trust others; needing to be in control.
Challenging behaviour/dysregulation/negative behaviour: behaviour as communication; behaviour adults find challenging to support; or describe the specific behaviour exhibited. Manipulative/controlling others: needing to be in control to feel safe; fearful of relationships. It is important to remember this is also a trauma response. Liar/lying: protecting themselves from shame; fearful of telling the truth.
And remember, working with trauma also impacts us on numerous levels, it’s important to reflect and talk about your experiences with other professionals.
www.outcomesfirstgroup.co.uk/trauma-informed-practice December 2023
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