Participatory research and wellbeing

Director’s perspective on joint decision making from Nancy Hey

The effort and investment can be very high for participatory processes and there can easily be negative impacts, especially for those with the lowest wellbeing. So it is important to: 

1. Be clear about the purpose of the engagement – know why you’re doing it and be explicit about what is up for change. If it is part of a ‘public health approach’ to an issue e.g. crime or workplace wellbeing, be clear about all the other activity to tackle it too and make sure it works together.  

2. Develop the skills. Whilst it may look straightforward, there are skills in doing participatory approaches well and this includes for research use and community ownership. I recommend that the next step is a review of the effectiveness of the various approaches on outcomes and processes – other than health.  Practice in this area has developed rapidly including online, and a review of What Works and How on Deliberative Democracy is timely, involving:

• A rapid evidence assessment of intervention evidence covering academic, policy and practice reports looking at both qualitative and quantitative reports against global evidence standards.
• A qualitative review of current practice to establish what approaches and methodologies are currently in use.  This will allow us to understand the evidence gaps.
• A review of autonomy, agency and control concepts and intervention effectiveness for both individuals and communities.

3. Remember it doesn’t replace communication and implementation. Even very big consultations that reach many people, like the 60,000 involved in the ONS Wellbeing Framework and subjective wellbeing measures, can be great for developing a robust and effective solution, but less so for ensuring strong and lasting engagement in the final project. This is because people pass through communities, age groups and jobs, so it therefore cannot be a substitute for good communication and implementation.  In many cases the workplace evidence suggests that good communications about change would be better than elaborate consultative approaches

Design approaches, user experience data and good qualitative evidence can also be successful for reaching effective solutions. We use a robust approach to synthesising qualitative research in our reviews and will shortly be publishing a guide to good quality qualitative research. 

Dr Louise Warwick-Booth writes…

One of our aims in the Centre for Health Promotion Research is to use research methods that support our many vulnerable research participants to share their experiences in a way that shifts the power balance between researcher and ‘researched’, enabling them to move beyond the role of participant. It is from this standpoint that three of us decided to write a book about Creating Participatory Research. We have (hopefully) produced a practical and useful introductory guide to support other professionals (community members), academics (researchers and lecturers) and students, all of whom may use participatory approaches in their own data collection contexts.  

In addition to the physical book, we also created a companion website  

Since developing the book, we have considered the many ways participatory research can be used to measure changes in wellbeing. Recent research by Centre for Health Promotion Research produced a theory of change , demonstrating three pathways towards better community wellbeing:

• Place (the physical characteristics of where we live)
• People (the social relationships within a community)
• Power (participation in local decision-making)

How can participatory research in these areas enable the development of the evidence base? 

People

By using participatory methods, we learn more about the experiences of everyone in the community, particularly those who are marginalised, vulnerable or disadvantaged. Traditional research methods often (unintentionally) exclude people we are trying to reach – those at risk of having the lowest wellbeing. A UCL systematic review showed that the most successful interventions are those where communities are involved in their design, delivery, and evaluation.

Participatory research can also lead to community changes such as improved social capital and enhanced social cohesion which are important for wellbeing. 

The subjective benefits attributed to using participatory approaches (for example, enhanced wellbeing and participation) cannot be fully assessed by quantitative methodologies and so benefit from a qualitative approach.

Place 

The places where we live, work and age have a huge impact on health and wellbeing, and on inequalities. There is a large body of evidence about the beneficial effects of green space and urban design on mental health, and wellbeing. Recent research  has shown that when changes are made to community places, these can have effects on wellbeing that are not always anticipated.  Community involvement in decision-making about changes to places and spaces was a facilitating factor for whether those changes did enhance wellbeing. Participatory research is a way that community members can be involved in shaping changes to the places where they live. A range of methods can be used, from CBPR and peer research at grassroots level, to Health Impact Assessment (HIA) and Wellbeing Inequalities Assessment to directly influence policies and practices to promote health and wellbeing in a way that is sensitive to local conditions and communities.

Power

The shift in power balance in participatory research can enhance wellbeing in many ways. If the research questions are chosen by the community participants, the research can lead directly to positive changes in the community, which enhances wellbeing and confidence as well as sense of autonomy and control.  Participation in research can enhance skill building and even lead to employment opportunities. Such approaches can also bring people together and improve social connections. 

Where to start

When it comes to the practicalities of doing participatory research, here are three pieces of advice from our experience: 

1. Take time to lay the foundations of any participatory work – it cannot be rushed.  Time should especially be invested in building relationships with community partners and members before beginning the research to build trust and to better understand their needs and priorities. 
2. As part of preparing to start the research – it is important to recognise differences in culture and potential biases, and to be frank about what each party wants/expects to gain from taking part. This is a good time to address power imbalances and consider how they will affect the relationship.  The project leads should communicate clearly (no jargon!) what is being asked of everyone taking part in the participatory research.
3. Be flexible and expect the unexpected! Sometimes life gets in the way and unforeseen challenges come up. The flip side of this is that unexpected benefits and positive outcomes are also frequently part of this work. Researchers need to be open to changes of plans, times, places and, often, participants.

So participatory approaches contribute to health and wellbeing research in an ethical manner, as they are based upon the idea of ‘nothing about us without us’.  Such approaches involve people ethically, ensuring that they are comfortable, whilst giving back power to the participants. 

Participatory methods are more able to respect cultural and ethnic diversity, whilst acknowledging researcher privilege. Whilst these ways of working can take longer, and need emotional management for all involved, they arguably bring wellbeing benefits for all from community members being heard, seen and respected, to researchers being connected and accepted.