Too stressed for words? Involving those experiencing stress in research

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

On this National stress awareness day, we wanted to take the opportunity to reflect on the ethics of involving those experiencing stress in research.

Fuse researchers are currently undertaking a realist evaluation to understand how, when and for whom, Citizens Advice Bureau (CAB) interventions improve people's health. CAB provide independent, impartial, confidential, and free advice to everyone on their rights and responsibilities. This includes advice on debt, benefits, employment, housing and discrimination.

Changes to physical health take a long time to show, and are therefore difficult to capture in the evaluation timescale. The impact of CAB on stress therefore forms a core focus of the study. As we know already that stress is linked to many mental and physical health outcomes, determining if and how CAB services reduce stress should enable us to project the potential health impact of CAB.

At the point when people approach CAB, they are often under considerable strain. Two in three people accessing CAB services report feeling stressed, depressed or anxious as a result of the problem or problems that they are experiencing, more than one in five people have had to move home or are worried about losing their home, and almost one in five are experiencing difficulties in relationships with other people.

We have had much discussion as a research team, together with CAB staff, around how to design the research in a way that generates sufficient data to assess the impact of the service, but which remains sensitive to what clients are experiencing. Imagine a scenario for example, whereby you approach a service for help already under significant stress, you are anxious to resolve a financial problem, yet before you can start to address the issue you're asked to fill in a lengthy questionnaire about your health. Furthermore, CAB have projects specifically designed to support those diagnosed with cancer. In the case of CAB clients who are currently undergoing treatment for, or supporting a family member with cancer, stress is likely to remain in spite of addressing financial concerns, and to ask if their health has improved would be inappropriate.

These are just some of the issues we've been grappling with and which have informed our decisions about which client groups we invite to participate, when we contact potential participants, and what they can reasonably be asked to take part in. A decision was made for instance, not to include a project for patients and families with cancer among those being evaluated. Baseline questionnaires will not be delivered before, but rather during or just after clients’ initial appointments. The number of questionnaires clients will be asked to complete has been carefully considered and where possible, shorter versions of questionnaires have been used in order to avoid over-burdening participants.

That said, we're also conscious of the risk of excluding people from taking part by making too many presumptions about participant preferences. We have often reflected during involvement with previous research on how generously people have shared their time and experiences even when undergoing difficult circumstances. We therefore continue to consider the balance between participant protection and autonomy when recruiting potentially stressed participants. In research with people experiencing difficult circumstances, involving potential participants and organisations working with them in designing data collection strategies is key to ensuring their appropriateness.

Photo attribution: Photograph ‘Anxious 1’ (File ID #1431663) by Joana Croft via freeimages.com, copyright © 2007: http://www.freeimages.com/photo/anxious-1-1431663

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