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.

Participatoryresearch

  • 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
E-mail: Rachel.Waters2@southwales.ac.uk

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.

References

Durham Community Research Team (2011) Community-based participatory research: Ethical challenges.  Available at: https://www.dur.ac.uk/resources/beacon/CCDiscussionPapertemplateCBPRBanksetal7Nov2011.pdf (Accessed 2 May 2014)

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