Following a number of high-profile reports of healthcare failures (Francis, 2013; Gosport Independent Panel, 2018), there has been considerable interest in humanising nursing care and the nurse education to support this (Scammell et al, 2017). This requires all practitioners and students to reflect on the way we see the world and to try to step into the shoes of those we care for, looking at care experiences through their eyes as fellow human beings. This does not sound difficult and is undoubtedly the aim of those who decide to take up nursing.
However, even with the best of intentions, in today's high-pressured, resource-stretched care environments (NHS England, NHS Improvement, 2019), it is easy to slip into seeing care as a set of tasks and downplaying things that make us feel human (Galvin and Todres, 2013), such as feeling valued, secure and dignified. Rightly, the movement to place the person centre stage, as opposed to treating them, unintentionally perhaps, as an object of care, has permeated all aspects of the care system including research. What should nurses look out for to enable them to judge whether health research is humanised?
There has been a huge shift in the past decades in the way health care is managed. One move has been the drive for the more humanised approach. Care used to be profession focused and organised; for example, 30 years ago those living with dementia were viewed as incurable and housed in large institutions where fundamental needs were addressed, but largely on a production-line basis (Kitwood, 1997), which was highly dehumanising. Over time, a social movement emerged pressuring for the humanisation of care (Morse, 2012) and the general public began to demand that their relative was treated like a person as opposed to an incurable disease. This led to the closure of such institutions and a growth in care approaches that respected the person, regardless of prognosis (Kitwood, 1997).
This social movement also led to more humanised approaches to the way research is carried out (Morse, 2012). In the past, patients were treated as objects of research with non-user friendly information about the study, its benefits and risks, how it was done, and the results. Most research was quantitative and designed by scientists without consulting participants. While the findings were useful, they often minimised accounts of patients' experiences.
For example, researchers might count how many patients reported less pain (quantitative research) after treatment but ignore how it made them feel (qualitative). The growth of qualitative research approaches, or collecting information from the patient perspective, has helped address some of the shortcomings of solely quantitative studies. Another example is what it is like to have chemotherapy (qualitative research) versus how many patients survive 1 year post-treatment (quantitative). Clearly, both sets of findings are beneficial. Both research approaches are now more common and the results are more meaningful.
The outcome of the drive to humanise health research is the recognition that patients and the public must be involved in all aspects of the process. Nowadays, to gain public funding for health research scientists must demonstrate how service users have been involved at all stages, from initial design to how the findings are shared in an easily understood way. There is evidence that patient and public involvement (PPI) has benefitted the research process. Brett et al (2012) conducted a systematic literature review highlighting that PPI resulted in more user-focused research objectives, development of user-relevant research questions and user-friendly information for participants and interpretation of results for lay audiences. Challenges remain to accommodate the needs of scientists as well as service users, but the principle is now embedded in health research.
Nurses and nursing students are increasingly involved with health research. At the very least they read it in their quest to ensure they are providing evidence-based care. It is our responsibility in judging the quality of research to consider the extent to which service users have been involved in its planning and how it is carried out. Make a point of looking for this; PPI should be made explicit in the information provided to the study participants and in any subsequent publication of findings. Gone are the days when patients could be used without question by researchers, even if the aim seemed highly beneficial. Humanised health research means genuine PPI involvement, where service users are at the heart of the process.