Conducting ethical engagements means understanding, accepting, and respecting participants' experiences. It prioritises participants' welfare by finding ways to reduce anxiety, harm, or trauma.

Through ethical engagement, Healthcare Improvement Scotland aims to improve how health and care services work and provide person-centred care (Healthcare Improvement Scotland, n.d.). In practice, this means:

• Listening to people
• Valuing people's views
• Involving people in developing services

Why is ethical engagement important?

Different methods of design, research, and engagement can impact people's wellbeing. They can cause anxiety, harm or trauma unintentionally.

When engagements are meaningfully designed considering various backgrounds and experiences, participants feel safe and able to contribute. They are given a sense of agency and have an active role in the development of services that consider people's different needs.

Ethical engagement is so important as it:

• reduces the risk of causing harm and trauma to participants
• reduces the risk of having biased information and unverified assumptions
• reduces the risk of participants feeling unsafe

What are different ways of engaging people?

Trauma-informed engagement

Being trauma informed is an essential part of ensuring user research is ethical. In conducting user research in a health and social services context, there can be a high likelihood of service users (and sometimes staff) having experienced trauma related to your research questions. It's therefore important to understand what trauma is and plan how to respond appropriately to mitigate the risk of further trauma to the individual through their participation.

What is trauma?

Individual trauma results from an event, series of events, or set or circumstances that is experienced by an individual as physically or emotionally harmful or life threatening and that has lasting adverse effects on the individual’s functioning and mental, physical, social, emotional or spiritual well-being. (The Scottish Government, 2021).

What does it mean to be trauma-informed?

Being 'trauma-informed and responsive' means being able to recognise when someone may be affected by trauma and adjusting how we work to take this into account and responding in a way that supports recovery, does no harm, and recognises and supports people's resilience. (NHS Education for Scotland, 2022)

Why do we need trauma-informed practices?

There are 5.4 million people in Scotland. We want to create services that are appropriate for all of them, solving the needs of citizens and improving their lives.

Sadly, traumatic experiences are far more common than we previously believed. Recent scientific research tells us that (‌NHS Education for Scotland, 2019):

• 31% of under 18s have been exposed to traumatic experiences
• 29% of women across their life span experience domestic abuse

Key principles of trauma-informed practice

Trauma-informed practices offer hope, empowerment, and non-retraumatising support for individuals who have experienced trauma (The Scottish Government, 2021). When engagements are meaningfully designed with consideration of traumatic experiences, they can greatly enhance the inclusivity and quality of the experiences for the people who come across them.

• Safety

Organisations should ensure the physical and emotional safety of staff and participants. This includes respecting people's privacy, confidentiality, and anonymity whilst reducing the risk of causing further harm and trauma.

• Trustworthiness

Organisations can build trust by communicating clearly and effectively. Being clear about expectations and outcomes helps minimise the “unknown” and the anxiety it might induce in participants.

• Choice

Making participation voluntary and ensuring participants understand their rights, their power to withdraw and they have a voice in the decision-making process of the organisation and its services.

• Collaboration

The organisation recognises the value of staff and clients’ experience in overcoming challenges and improving the system as a whole. This is often achieved through peer support and mutual self-help.

• Empowerment

Efforts are made by the organisation to share power and give clients and staff a strong voice in decision-making, at both individual and organisational levels.

Hints and tips:

It's important to consider ethics throughout the project. Service design projects are iterative. This can be a challenge if you are faced with ethical approval processes which expect that you have every aspect of your research planned in advance. You will need to continually update your approach, plans and potentially your documentation.

Reflect

• What process do you need to follow in your organisation (and/or your partner organisations) to gain ethical approval?
• Have you developed an ethical statement and plan? How have you communicated this to your stakeholders?
• How are you ensuring the safety (including psychological safety) of participants/colleagues, the validity of research and the transparency of activity?

Resources

References

Healthcare Improvement Scotland (n.d.). Meaningful Engagement Matters by Community Engagement. https://www.hisengage.scot

NHS Education for Scotland. (2022). National trauma training programme | Turas | Learn. https://learn.nes.nhs.scot/37896/national-trauma-training-programme

‌NHS Education for Scotland (2019, December 03) Sandra Ferguson - Leading the National Trauma Training Programme. [Video] https://vimeo.com/377019393

The Scottish Government (2021). Trauma-Informed Practice: A Toolkit for Scotland. Scotland. https://www.gov.scot/publications/trauma-informed-practice-toolkit-scotland/ (Report No. PPDAS814746 (01/21)

Examples from practice