Monthly Archives: June 2014

Participatory Research with Carers

This guest blog post was written by Rachel Waters from Newport Community Counselling Service.

University of South Wales logoNewport Community Counselling Service (NCCS) is based at The University of South Wales. The service offers free counselling to local people at venues across Newport and Caerleon.

NCCS also carries out research into counselling and in this blog I will focus on our participatory research with carers.  I’ve reflected on some challenging aspects of the work and included a few tips to help others involved in participatory research.

What is Participatory Research (PR)?

Participatory research involves people in research as co-researchers not just participants; knowledge is co-produced through collaboration between community research partners, and research should lead to action to benefit the community under study.

Participatory approaches have a distinct value position ‘involving … sharing power with those usually the objects of research, and to working for progressive social change’ (Durham Community Research Team, 2011, pg.4)

Finding our Co-researchers

Our first step was to engage carers’ organisations in the Newport area.

This was initially difficult – many organisations were supportive and wanted to be ‘kept informed’, but did not have capacity to get involved.  Explaining the nature of participatory research was tricky– often I was asked about the research questions and the time commitment needed.  I explained that co-researchers would decide on research questions and that commitment was flexible depending on organisational interests and capacity. The uncertainty inherent in participatory research approaches makes it difficult to predict in any detail what the project will involve, and this makes it harder for organisations to be able to commit to involvement.

Despite these challenges we eventually gained the interest and commitment of a number of key local organisations and individuals, who agreed to become co-researchers.

Our co-researchers

Our co-researchers are: Newport Carers’ Forum, Hafal (Newport), Newport City Council Carer’s Development officer and Newport Council Adult Review Team.


  • Tip…Existing positive relationships with organisations and individuals can make this first step much easier.
  • Tip…   Prepare a succinct and accessible explanation of participatory research but be prepared for questions about the details of the project.

The next task was to work together to decide on our research question.

Deciding what to research

Ideally in participatory research, community co-researchers choose the research topic and questions, however, our particular context as a University based counselling service required that we focus on counselling.  We made our co-researchers aware of this from the start. 

A review of the NCCS counselling service revealed that not many carers were using our service and those who were often didn’t stay for long.  This was worrying as we know from our co-researchers and from research that there are lots of carers in this area, that caring can lead to stress, depression and anxiety, and that counselling can be helpful to carers.  We shared this information with our co-researchers and the group decided to explore this discrepancy with the aim of improving the service NCCS offers to carers and sharing what we find with other counselling and carers organisations.

Discussion with our co-researchers revealed that carers tend to focus on the cared for person whilst neglecting their own needs.  This was supported in the research literature.  The group wondered if carers view counselling as a way of helping them to maintain caring and underestimate how helpful it might be for addressing their own needs.

The group came up with the following objectives:

  • To identify carers expectations of the process and potential outcomes of counselling
  • To identify whether and how carers think that counselling could be helpful to them, particularly in relation to the impact of caring on their emotional well-being
  • To identify barriers to carers accessing counselling services
  • To work collaboratively and as far as practicable, equitably with local community member

Although reading this summary, it might appear that our research objectives fell quickly and seamlessly into place, in reality the process of integrating academic and community based knowledge was time consuming and awkward.  We reviewed the literature and listened to our community partners at the same time – in hindsight, listening first and then reviewing literature on the topics raised may have facilitated the process.

  • Tip…    Consider in advance whether and how you will integrate academic knowledge of the topic into the development of research objectives or questions.

Developing our study materials

We decided as a group to use semi structured interviews to gain information from carers, and set about producing our study materials – publicity for recruiting participants, interview schedule, etc.

Ideally in participatory research all materials would be produced as a group from scratch, however, pragmatic concerns meant that we decided the academic partners would develop the materials which would then be reviewed and edited by the group using their experiential and local knowledge.

The review process resulted in several changes to our materials such as clarifying the term ‘carer’ – which our co-researchers informed us was used locally to refer to paid as well as unpaid carers.  We also adjusted the interview schedule to suit those caring for more than one person – a situation which our co-researchers demonstrated was far more common than we had anticipated.

Research Outcomes

One of the important aspects of participatory research is that it should lead to positive action to benefit the community being researched – in our case, carers in Gwent.   What action we take depends on the results of our research however, we have various ideas in mind which include developing specialist training for counsellors working with carers and /or producing accessible information for carers about counselling.

We are currently recruiting carers to be interviewed for our research.  If you know of any unpaid carer, over 18 in Gwent who might be interested please forward my contact details:

Rachel Waters (Research Assistant)
Newport Community Counselling Service
Tel: 01633 435282

Any views or opinions presented in this blog are solely those of the author and do not necessarily represent those of the University of South Wales or community co-researchers.


Durham Community Research Team (2011) Community-based participatory research: Ethical challenges.  Available at: (Accessed 2 May 2014)


Co-Production in Action

Co-production, the idea of organisations seeing communities and service users as an asset in providing services, appears to have achieved a philosophical consensus as being a nice idea. However few organisations are really willing to move beyond fluffy rhetoric into making this ideology a practised reality. Perhaps one of the biggest barriers is that individuals within organisations forget that they too are members of the public and not something so separate from the people their organisation exists to serve. It may be a case of organisations not realising or recognising that the service user is a valuable asset with something to contribute, to ‘give back’ to the organisation that serves them. Or maybe it is as simple as this: co-production asks that those at the top of organisations who currently have all the power share this power with people and communities. This is impossible without trust. Those who currently hold power have to trust communities enough to consult with them, to be ready to talk and to listen and to do so honestly.

If you have never met anybody who is openly in recovery from or has recovered from a drug or alcohol addiction, it is possible that you do not consider this demographic particularly trustworthy. When I started volunteering for Recovery Cymru (a recovery community where people recover from drug and alcohol problems) in August 2012, I saw that the entire organisation (especially back then, before it received lottery funding) would fall apart without the hard work of not only the two paid members of staff but also the other volunteers, many of whom are recovering or recovered alcoholics and drug addicts. The ethos of Recovery Cymru is that we are a community, whether you are a member, a volunteer or a paid member of staff and whether or not you personally have ever had an addiction problem, and that every member of our community has something to give as well as something to gain from being part of it. I consider myself extremely privileged to have met some wonderful, strong and inspirational people through my involvement with Recovery Cymru.

Recovery CymruIf you were to walk into the Recovery Cymru building or indeed to any of our group sessions or events, it would not be immediately obvious who was a ‘service user’ (a word that is not used within Recovery Cymru, but the importance of language is something I will save for a later blog!) and who was not. Many of our members who join to get help with addiction are also volunteers, so the line between the service user taking from the organisation and the staff and volunteers giving to them is immediately blurred.

The level of responsibility volunteers (many of whom are also ‘service users’) choose to accept varies from helping with administrative tasks and keeping the building tidy to facilitating groups such as the weekly cookery social and arranging one-off events to representing Recovery Cymru at conferences such as AWSUM. Everyone who ‘uses’ the Recover Cymru services are also giving something back and the Recovery Cymru community thrives because of this.

Crucially, this ethos of co-production not only gives a sense of worth and value to individuals who have often been rejected in other areas of their lives, but is also massively beneficial to the running of Recovery Cymru. It seems obvious but in so many organisations it is overlooked that the service user is in fact the expert and that their views are the most important of all. At Recovery Cymru the experts are those people who are in recovery from drug or alcohol addiction and the organisation depends upon their knowledge not only of the recovery process and the various paths to recovery but of the many issues that often (but not always) accompany a history of addiction such as housing issues, mental or physical health problems and in some cases trying to find employment after being in prison. The people experiencing these issues, and those who have overcome them, are best placed within Recovery Cymru to shape the organisation because, after all, Recovery Cymru exists (like many organisations) to support the service user.

At Recovery Cymru, every member is invited to input into an open meeting which is held bi-weekly. Here members discuss things such as which new groups they would like to see run – how better to make sure that the groups meet the needs of those using them then to ask those people what they want? Many of the groups are facilitated by volunteers – some of whom are in the recovery process. Members also get a say on the procedural elements, including being able to review the code of conduct. In fact, when Recovery Cymru received Lottery Funding that meant they could take on new members of staff, current volunteer members of Recovery Cymru sat on the interview panel and questioned candidates.

It could only be a good thing if more organisations recognised their service users as the asset that they are and took advantage of their expertise to improve the service through mutual trust and co-operation.

–          Non