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‘You need to go to people; don’t expect them to come to you’. So advised Ceinwen Giles, a consultant in patient experience and a member of The King's Fund's general advisory board, when she spoke to staff at the Fund last year.
This advice took on a particular resonance for our research into patient, carer and staff experiences of district nursing care for older people. This type of care takes place in one-to-one interactions, in private spaces, for people who may well be socially isolated, so it is particularly difficult to learn about the quality of care, but particularly important that we try.
First, we needed to identify patients to interview, which was no easy task: because many people in this group are housebound, we had to rely on district nursing teams and third sector services that support people at home to share information about our project with the people they care for. But district nursing teams are under intense pressure, and in some areas third sector services are shrinking because of significant funding cuts. The recruitment process required plenty of persistence and flexibility on our part, and was itself an education about the state of support services for older people.
We were keen not to exclude people with cognitive impairments, for example, people living with dementia or with communication difficulties. So, to be sure that individuals gave informed consent to participate, that they understood what the interview would involve and how we would use the information that they gave us, we talked to them face-to-face.
Face-to-face meetings come with pros and cons. On the positive side, non-verbal communication – such as body language and facial expressions – helped us and the participants to understand one another better, especially in interviews with those who were living with hearing loss, a speech impediment following stroke, or who spoke quietly because of reduced energy levels.
Face-to-face interactions also helped us to build rapport and trust with participants. This helped them to feel they could be candid, which was particularly important as older people are generally more likely to rate services highly – ‘I can’t complain’ was a familiar refrain. We worked hard to support participants to identify possible improvements without necessarily having to criticise their existing care.
Visiting people in their homes meant we also got a better sense of their lives – the conditions created by the coming and going of various care staff, for example, and the extent to which they were socially connected. It also gave us an understanding of the working conditions of district nurses.
We found that carers often had particularly valuable insights as a result of knowing the patient and their needs, observing (often first-hand) the care they received from district nursing teams and having a sense of how that care did or didn’t join up with other health and care services as well as with the person’s wider support network.
Carers were often more ready to critique aspects of a service, giving us more idea of what could be improved. They were also very helpful in practical ways, supporting us to gauge patients’ capacity to participate in the research, and often enabling individuals to participate more fully by helping to translate between our questions and their responses.
However, face-to-face interviewing meant visiting people in their own homes for interview sessions of 90 minutes and more. Travel time in both rural and busy urban areas meant that a full day’s work for two researchers could yield just three interview sessions. We spent many hours and days chasing recruitment leads that resulted in dead-ends, navigating country roads, sitting in traffic jams and enduring attacks from cats. This is undoubtedly a resource-intense approach.
We have learnt a huge amount from the people we spoke to, and have been rewarded with a rich set of data. This is helping us to understand not just what is important to older people about the care they receive and how it is given, but why those things are important.
This should make it possible to get beyond some apparently intractable tensions in district nursing care to support fresh thinking on how services could be improved for patients in a way that is also realistic for staff and providers. We hope that our reflections will be helpful for those attending our event tomorrow on how to use patient feedback more effectively to improve services, and for others to explore ways of using data from patients’ experience to improve services.
We will be reporting on our findings in the summer.