Personal stories, rather than bald medical statistics, can give healthcare providers deeper insights into ways to improve patient care.
Belinda, a 35-year-old solicitor, describes her physical symptoms of depression as an absence of warmth, as if she were standing under black clouds. “People talk about a black crow or something over their head, and I fully understand what that feels like. It feels like there’s no sun coming down.”
For Jack, a 71-year-old retiree, depression led to “this feeling where you, you just start to quiver inside … You’re not shaking outside, but you’re [shaking] inside.”
Meanwhile, John, a 40-year-old father of three, says his most powerful physical symptoms arrived as vivid dreams. “I’d wake up … drenched in sweat; I’d just wake up totally wet and I’d have to … pull the covers back and then I’d sort of go for a walk around the house, get a drink and wait till I’d dried off.”
Each of these three interview participants is talking about depression, which the World Health Organization estimates affects 350 million people globally.
Tapping more directly into personal experiences of health and illness can yield important insights into ways to improve social and health services, says Associate Professor Renata Kokanovic, a health sociologist at Monash University, Melbourne.
She and research collaborators interviewed Belinda, Jack and John as part of a project called Experiences of Depression and Recovery in Australia, which gathered the stories of 42 people in interviews between two and four hours long.
“Depression is a very broad umbrella, capturing lots of different degrees and expressions of emotional or psychological distress,” Associate Professor Kokanovic says.
The research gives an understanding of how the broader context of the world we live in – and the influences of society, family and other groups – contributes to the way people experience emotional distress.
As well as providing material for qualitative analysis, 39 of the participants agreed to the transcripts of their interviews being used on a project website, many also accompanied by audio and video clips. The website can be accessed by health professionals, policy makers, researchers and – most importantly – the general public, including people with experiences of depression.
The project is one of several similar websites being developed by a network of researchers across 14 countries. The collaboration, known as DIPEx International, is led by the University of Oxford and applies a methodology developed by Professor Sue Ziebland of the Oxford Health Experiences Research Group.
Professor Ziebland collaborated with Associate Professor Kokanovic on the Australia depression project, along with Professor Jane Gunn from the University of Melbourne and Dr Nicole Highet of Australian national depression initiative beyondblue.
The websites put the spotlight on specific health conditions and experiences, including cancer, depression, ageing and type 2 diabetes. As with the depression work, each project involves between 40 and 50 interviewees, capturing a diversity of experiences.
“There are a lot of existing health websites, but the strength of this research approach and methodology is that this website is underpinned by serious qualitative research and rigorous analysis,” Associate Professor Kokanovic says. Each project is also overseen by an advisory panel of health professionals, researchers and patients, and families.
Material from the international projects will eventually allow cross-cultural comparisons of health experiences in different cultural contexts.
“We are developing strategies for these comparisons to develop a better picture of what is going on internationally,” Associate Professor Kokanovic says.
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