It is particularly pertinent to support young adults with kidney disease while they are transitioning from paediatrics to adult clinical care. This period in a young person’s life is challenging at best, and the added complication of their disease can exacerbate the situation. Typically in the UK, around a third of kidney transplant recipients who transfer from paediatric to adult services lose their kidney within three years.
In order to help improve outcomes for young people with long term conditions, NHS Kidney Care
commissioned six project groups
to develop innovative new approaches to supporting young adults who have kidney disease. These approaches have centred on the role of a key worker to operate across adult and paediatric kidney services, as well as primary care, social care and other settings. The groups in phase one will complete this 18-month project during 2012.
During the completion of this phase, Ipsos MORI Ethnography
have been working with NHS Kidney Care to understand the world surrounding a young person with kidney disease outside of a clinical setting; to learn about and see the types of challenges that are faced in everyday life, in order to identify where young people are lacking in support and whether they would like help with regard to this.
Ipsos MORI presented the initial results to the kidney care community at the Supporting Young Adults Evaluation Launch Event in May, and are currently working alongside NHS Kidney Care to determine what could be done to improve these young people’s care, and thus the quality of their lives.
You can preview a case study of one of our participants below:
David is 22, lives in Plymouth and is back on dialysis after his transplant failed. Chronic kidney disease defines so much of David’s identity, yet he struggles to define what the disease actually is. In patient work, we often see a heavy dependence on parents and carers to understand their condition, with young people often negating responsibility. Sometimes, having ‘lost their childhood’ to the disease, there is a push-pull relationship between young people and parents over levels of independence and control.
All young people in our study speak of the importance of close friends in helping them through ‘tough times’. While healthcare professionals can be seen as ‘speaking a different language’, it is interesting to note the ‘connectors’ or ‘translators’ that young people do feel comfortable speaking with: nurses and parents. Of particular note, and as you saw with David, the support gained during trips away with other chronic kidney disease patients who have ‘walked in their shoes’ is invaluable.
Fieldwork took place between 5th April and 4th July 2012. Six participants took part in the study and have a variety of modalities and stages of disease. Participants are aged 20-26 and come from a spread of socio-economic groups and ethnicity. The project has been designed longitudinally, so we can revisit these young people in the future.
Ethnography is a research method based on participant observation, meaning that the researcher is in the subject’s environment, observing actual behaviour for an extended length of time, capturing all of the interactions and activities involved in daily life. Ethnography allows deep insight into the emotional nature of much of human behaviour. This project looked at how young people cope with kidney disease in their everyday lives, getting to the heart of the types of challenges they face, how they are accessing their support networks, and what information, if any is missing. The power of ethnography comes from in-context observation, which means we are there with participants when they are doing things throughout the day. Ethnographic research at Ipsos MORI is filmed, providing more visually engaging report outputs.
For more information, please contact the Ipsos MORI ethnography team