Who cares for the carer? An ethnographic understanding of the role of carers in home dialysis

This week is National Carer’s Week, a national annual awareness campaign that celebrates and recognises the UK’s six million unpaid carers. 

Carers are fast becoming at the heart of a lot of NHS policy in moving care out of hospital and into the home. This is particularly pertinent in kidney care, where patients are starting to dialyse at home so that they have an increased quality of life and more control over their own care. However, there is an implicit assumption in this move that carers will take on part of this extra work, and there is a need to better understand the role that carers play in looking after patients. We know from previous work that there is an increased burden placed upon carers and that the impact on them is not well understood.

NHS Kidney Care have led the field in this area and began research into carers last year, culminating in a report published in September 2011 – ‘Home dialysis: who cares for the carer?’ The report intended to further explore the carer’s role, and to share with healthcare professionals and other patients the realities of life for the family members and partners of those on home dialysis. It contains a series of recommendations for healthcare teams – points to consider when patients are moving onto home dialysis, which may help to improve the experience for those around them. In doing so, it recognises the important role that carers play and offers constructive suggestions on how best to support carers in helping patients to be treated at home. Following the success of the report, Ipsos Ethnography are currently working with NHS Kidney Care to highlight the difficulties that carers face when caring for renal patients and look for potential success stories to learn from. NHS Kidney care will disseminate the results of this research through six ethnographic filmed case studies (one of which can be viewed below) to be published on the NHS website later this summer. Matthew cares for his mum, Elsie. They are in a unique situation, in that Elsie has recently moved into a care home, and although this has relieved some of the pressure that Matthew faced while looking after his mum, he still dialyses her on a daily basis in his own home. Matthew really values the support he gets from the nurses in the renal unit, and places high importance of them proactively contacting him. The takeout from this short film is that carers may need help from healthcare professionals to establish manageable routines and reasonable boundaries. This will help them cope with their roles and avoid them becoming ‘swallowed up’ in the patient’s needs. Notes: Ethnography is a 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, looking at how they fit their caring duties around 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 is filmed, providing tangible report outputs.