Too stressed for words? Involving those experiencing stress in research (part 2)

Posted by Fuse members Sonia Dalkin, Lecturer in Public Health and Wellbeing, and Natalie Forster, Senior Research Assistant, Northumbria University

Following on from our post last year on National Stress Awareness Day, and in light of the current media attention paid to welfare benefits, we wanted to take the opportunity to reflect on the difficulties of involving those experiencing stress in research. This is in relation to our recent recruitment efforts for a realist evaluation of the impact of Citizens Advice (CA) on health.

"Stress" by Bernard Goldbach

CA provide independent, impartial, confidential, and free advice to everyone on their rights and responsibilities. This includes advice on debt, benefits, employment, housing and discrimination. Throughout the study, a recurrent theme of stress has been evident. The links between stress and health are abundant. This stress lens therefore formed the health focus of the study, overcoming the difficulties of recording the variety of outcomes leading to health improvements and capturing changes to health which would only be evident beyond the study timescale. Determining if and how CA services reduce stress should enable us to project the potential health impact of CA.

We carried out a mixed methods evaluation, detailed here. This required CA clients to complete a questionnaire when they first accessed CA and six weeks later. CA staff collected the questionnaire data for the research. Twenty-seven clients were also invited to participate in interviews. CA staff were initially apprehensive about data collection, due to clients often being in crisis and therefore having extremely high levels of stress.

Initially, recruitment was very slow. This was due to a variety of factors, some of which could be related to stress:

• Some clients were too stressed to engage in completing the questionnaire at Time 1 (initial contact with CA).
• CA staff found it extremely difficult at times to get in contact with clients at Time 2 (six weeks later). This was often due to their own heavy workload but also due to client reluctance to answer calls from unknown numbers (CA has a withheld number) and client wishes to move on with their lives once issues had been resolved.
• Clients were reluctant to participate in interviews because they were too stressed and had often been let down by other organisations when disclosing personal information. 
• Some clients also suffered from severe mental health issues which meant they found the prospect of an interview very stressful. 

To overcome these barriers, several strategies were employed. These were developed collaboratively with CA, and through engagement with the project steering group.

• We worked with CA staff to develop a bespoke questionnaire, meaning that CA staff felt confident that it was not over burdensome for clients. This included shortened versions of questionnaires where possible. Questionnaires were also carried out by a client’s named CA contact who they trusted and would be more comfortable disclosing information to.
• We ensured that CA staff had a detailed understanding of the research aims in order to explain the research clearly to participants and gain their trust in the research. They could therefore highlight the importance of completing the Time 2 questionnaire to participants. When participants understood that the research aim was to show the ‘good work’ CA do, as opposed to focusing on their issues, they were more likely to engage. 
• Offering interviews at a client’s home or via skype, in addition to the original offer of interviews at CA Gateshead allowed for participants to be in a location where they felt most relaxed.
• Offering clients the option of having their named and trusted CA staff member attend the interview for the first 10 minutes allowed this trusting relationship to be transported to the interviewer.
• Offering clients the option of having a relative or friend attend the interview also helped to put the client at ease. In one case, the client gave permission for their partner to do the interview on their behalf as they had been highly involved in the process of interacting with CA.

These improved strategies led to the collection of 261 Time 1 questionnaires with a 92 per cent follow up rate, and 23 clients participating in interviews.

Although CA staff were initially apprehensive about data collection, working in partnership and being flexible with recruitment strategies overcame this. It is important to provide all clients with the option of participating in research; presumptions of non-participation remove client autonomy which is unethical. In this research project and all research with people experiencing difficult circumstances it is essential to involve - where possible - any potential participants, the organisations working with clients, and experts, to find the most fruitful recruitment strategies.


The CA research team also consists of Monique Lhussier (Reader in Public Health and Wellbeing); Philip Hodgson (Senior Research Assistant) and Sue Carr (Professor of Public Health Research), who have all read and contributed to this blog post.

The study ‘Exposing the impact of advice services on health and inequalities’ is funded by the NIHR School for Public Health Research (SPHR), via the Public Health Practice Evaluation Scheme (PHPES). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

Links:

• More information about this research is available on the NIHR SPHR project pages on the Fuse website.
• Fuse research brief: How do Citizens Advice Bureau services improve people’s health?

Photo attribution: “Stress” by Bernard Goldbach via Flickr.com, copyright © 2011: https://www.flickr.com/photos/topgold/6273248505