Gaining access to unspoken narratives of people living with dementia on a hospital ward—A new methodology

This is a methodological paper that aims to advance the conceptualisation of participatory research by focusing on the value of capturing and understanding movement as a vital means of communication for older people with dementia in a general hospital ward. Qualitative research involving people with dementia tends to be word‐based and reliant upon verbal fluency. This article considers a method for capturing and understanding movement as a vital means of communication.


| INTRODUCTION
This is a methodological paper that aims to advance the conceptualisation of participatory research by focusing on the value of capturing and understanding movement as a vital means of communication for older people with dementia in a general hospital. Qualitative research involving people with dementia tends to be word-based and reliant upon verbal fluency. Although observational methods have been used, 1 interviewing is the main method of data collection for researchers, even though dementia is a condition that affects a person' language skills 2 and capacity to respond to direct questions. 3 Participatory research is posited as more inclusive, in that it seeks to engage people with dementia on their own terms, using a range of creative methods. For example, researchers have used photo-voice and video to enable the participation of people with dementia in community-based research projects. In this article, the conceptualisation of participatory Studies that have considered the narratives of people with dementia, or which have attempted to understand their experiences, have taken place in long term care or at home where people are comfortable, supported, or at least in familiar surroundings. 6 When a person with dementia is in an acute hospital they are in an unfamiliar environment, unwell and often without familiar faces around them.
Communication with people who have dementia has rarely been studied in this challenging environment. 7 Intergral to the method reported on here is that the narratives were shared in the contextual environment of their happeining -an acute medical ward -and thus did not rely on recall of past events.
This narrative study aimed to explore and develop a method that forefronts movements, both big, small and micro, to bring an understanding to what a person is communicating when they cannot rely solely on words. This video method captured people's movements as well as their words, and showed that these movements can be utilised as a lens (a mobilities lens) through which to access layers of meaning within a person's narrative. The narratives were considered as multi layered and textured performances wherein movements were analysed alongside verbal utterances to interpret the narratives and construct an understanding of the person in that moment. This narrative approach not only aimed to challenge the biomedical narrative of the acute hospital, but also to keep the person in focus and value the uniqueness of each individual's experiences at a specific moment in time.

| PHILOSOPHICAL ASSUMPTIONS AND THEORETICAL UNDERPINNINGS
Central to this method was inclusion of people with dementia on their own terms, rather than on the terms of the researcher. The study was framed within Bartlett  research with people who have dementia; using a critical lens that considers power dynamics; and finally translating research into practice in a meaningful way.
For those living with dementia the difficulties encountered with expressive language, loss of memory for recent events and disorientation to place and time may limit the possibility of engaging narratively with the world and with others. 9 Healthcare professionals and researchers expect a different narrative than the one that is often provided. This is especially true in the context of acute healthcare which relies heavily on the biomedical interpretation of a patient's story and the search for the medical "truth".
The biomedical approach to illness works to colonise the narrative of the patient. The ill person not only agrees to follow the treatment that is prescribed, but to also tell their story in medical terms that are expected by the healthcare professional, and to which the professional will listen. 10 Narrative colonisation by medicine is increasingly questioned in a world with a growing number of people living with long term health conditions. The "post-colonial" ill person demands to speak rather than being spoken for, to represent oneself rather than being represented, and rejects the reduction of their experiences to a mere set of symptoms. 10 People want the human, personal aspect of their condition to be understood from their perspective; to be given the space to tell their own story. Where verbal communication is deemed to be difficult, the problem is situated with the person living with dementia, a viewpoint that does not lend itself to the exploration of other methods of expression. 11 The method described here involves focusing on the narratives of the moment in the context in which they occurred, and not looking for coherency, authenticity and consistency. 12,13 The attributes and value of shorter, fragmented narratives 14 were acknowledged, as were the body movements that accompanied them. Expecting to understand the narratives of someone with dementia only through their use of words is to "overlook how bodily sources of agency, grounded in pre-reflective level of experience, are fundamental to the constitution and manifestation of selfhood". 15  Existing methods, such as Dementia Care Mapping (DCM™) 1 recognise that people with dementia do not always communicate verbally but can be understood through observations of their behaviours. DCM™ is a practice development intervention that has been successfully used within health and social care settings to support the embedding of person-centred care. DCM™ recognises behaviour, mood and engagement by structured observation of people with dementia in care settings. However, facial and body movements are still envisioned as behaviours with the person placed as a passive recipient awaiting the bestowal of person centred care, rather than as an active agent with rights and abilities. 8 Focusing on the physicality of communication is novel to a healthcare environment. Within acute hospital wards non-verbal, or embodied communication were not recognised as such, but rather were understood and viewed as acts of resistance, disruption or transgressive behaviour to be managed and limited. 16 Viewing narratives through a mobilities lens places the spoken words in secondary importance to the movements of the participants.
Movements are thus no longer viewed as behaviours, but as communicative strategies that require interpretation.

| METHOD
This visual narrative enquiry aimed to utilise a participatory approach to data collection in order to gain some insight into the experiences of people living with dementia whilst on a busy and noisy hospital ward.

| Video and recruitment
The use of video to record the narratives engendered a focus on what the participants could share in terms of narrative, rather than what they could not, as a wider range of response possibilities were captured that extended beyond the narrow range of verbal responses. 17 Video based research that is well designed can yield significant benefits by improving the understanding of healthcare and enhancing communication, 18 yet this method is rarely used within hospitals.
Unlike previous studies where small digital cameras have been used, 19 or video equipment, 20 this study utilised a Samsung Galaxy S3 tablet which has a large 9.7 inch screen and good picture resolution.
Due to the larger screen size and high resolution picture, the tablet  tablet on which was a video of the researcher interviewing her older parents. If a relative was present their consent to being involved was also sought. The conversation with participants was opened with a request to "have a chat". The ensuing conversations were conceptually understood as being the participant's narrative of that moment and time.
Interview schedules and questions were not used to elicit the narratives as these rely on remembering, recounting and relaying accurate experiences, something that people with moderate to severe dementia often find difficult. Instead, each narrative took place as a conversation that was directed by the participant in context on the ward; was unconditionally accepted, and analysed on an individual basis utilising a lens of mobility.
Study participants appeared to find using the tablet and having Following each recording feedback about their videos was elicited from participants. Three participants did not wish to review their video. In common with Hung et al's 21 findings from their go-along interviews, when videos were played back to patient participants, those participants who did comment, made comments about their appearance in the film, rather than the content of the data. Comments were made such as "Oh I look old, I'm 94"; "I look anxious" and "there's a bruise on my face". Videos taken in the context of an acute health crisis are potentially upsetting; people do not look their best when they are in hospital due to an acute illness or social crisis, and viewing oneself in this situation, especially if you have visual signs such as facial bruising, can potentially be upsetting.

| Participants
The participants were aged between 76 and 101 (Table 1) and thus included some of the oldest old.
People were identified as having a dementia diagnosis from their medical notes and were first approached by a member of the ward staff to establish if they would like to hear about the study. If they wished to hear more, the main author approached the potential participant and showed them the tablet and talked about the study.
This study aimed to be inclusionary rather than exclusionary; therefore a formal cognitive assessment was not used because these have been used in other research to exclude people with dementia. 22,23 Formal cognitive assessments can also be stressful and feel humiliating to a person who may well know that the questions are simple, and yet find themselves unable to answer. They also add to the burden of questioning that is experienced by patients in the initial days of admission.
People were excluded from the study if they were critically unwell or receiving end of life care which was established by reviewing the notes; or if they were unable to make known and communicate their choices and preferences either verbally or non-verbally.
The ethos of qualitative research is to value individual perspectives, so sample size is considered less important than the depth, richness and diversity of data. Twelve people were recruited to the study but not everyone was comfortable with being video recorded and chose instead to be audio-recorded (n = 1) or agreed for the researcher to take field notes as an alternative (n = 2). One video recording was deleted as the participant did not understand the use of the video for research or education and the personal consultee could not be contacted. The eight videoed narratives are shown in Table 1.

| Consent and ethical issues
There is increasing unease amongst qualitative researchers that the ethics process in research is exclusionary rather than inclusionary 8,24,25 and based around the ethics and consent processes that are designed for clinical trials. This has caused ethics review boards to be tied to the experimental, hypothesis-testing positivist paradigm. 26 People who are assessed by a researcher as being unable to negotiate the complex consent process for themselves are often excluded from participating as a result of misguided paternalism. 22,27 Obstacles to participating in research include determining mental capacity to provide informed consent and the complexity of the consent process. 24,[28][29][30] This "exclusionary ethics" prioritises the duties and action of others (the researcher, ethics committees) and further disempowers an already stigmatised group of people by preventing them from participating in research. Alongside Boyle 31 it is argued here that a more expansive concept of agency is needed in social science theory that is informed by the experiences of cognitively disabled people, rather than the researcher.
The ethos of using inclusionary methods becomes problematic when research processes, such as recruitment and consent to participate, rely on a person being able to understand complex written and verbal information in a relatively short time frame and to be able and willing to sign forms.
It could be argued that this complex process of consent has been designed to protect the researcher rather than the participant, and that it leaves a person affected by dementia in a position in which it is almost impossible to consent for themselves, and therefore dependent on the decisions of a consultee. The person is "outpaced" because the information provided is too complex and in a form that is difficult to understand. 32 For this study the main author argued at the Research Ethics Committee (REC) meeting against using the participant information sheet and consent form that had been produced for the purpose of gaining ethical permission to undertake the study. The main author argued that a one-off consent process that was very complex did not enable the participant to properly consent; and that if the process was simplified then more people would be able to consent for themselves. She also proposed to divide the consent process into two parts: firstly to take part in a conversation that would be videoed, and secondly to use the resultant video or audio recordings as data for research and for showing in educational settings such as teaching or conferences.
The resulting REC decision required the researcher to use the participant information sheet and consent form as a check list rather than giving them directly to participants. The committee agreed that process consent 25 was more effective than the use of a consent form on a single occasion. It noted however that clear records of ongoing explanation and consent should be kept; this was achieved through a reflective diary. The committee noted that there was no doubt that the research was connected to the impairing condition and it was a rare example of research which targets this group with an aim of understanding them better. The committee agreed that there was an ethical imperative to conduct research of this nature as it should also yield some useful training materials and might lead to positive changes in practice.
Where the participant was assessed by the main author as not having the capacity to consent to inclusion for themselves, then a personal proxy was consulted and the participant information sheet and proxy forms were used.
Making the consent process more accessible, using the tablet as a contextual indicator of what the research entailed and dividing the consent process into two parts resulted in more people with dementia being enabled to consent for themselves because the information provided to them was accessible. Every participant or potential participant was clearly able to indicate whether or not they wanted to take part in a videoed conversation with the researcher.
People were as happy to say or indicate no (for instance by withdrawing from the interaction and closing their eyes), as they were to say or indicate yes. During the course of each conversation it was established if the participant understood that this video was for use in research and/or education and a proxy opinion sought accordingly (Table 1).
Making the consent process a two-stage process also enabled people to take part in what can be an enjoyable activity-namely talking with a person who is not hurried and can give undivided attention. For people that were approached and did not want to take part in the research they often enjoyed a conversation and the opportunity to use the tablet together.
To conform with the regulations of the hospital each participant (or proxy where appropriate) did sign a simple hospital consent form that confirmed that they were happy for the video recording to be used in either research, education or both.
Ethical approval for the study was received from the University of Southampton and the NHS Health Research Authority, South Central-Berkshire REC, reference 17/SC/0625.

| Analysis
This research method necessitated developing a new way of data analysis that could bring out the nuances of movement that each participant made whilst narrating their story. Schwartz 33 argues that in a world where we are surrounded by ever increasing numbers of visual images, there is an assumption that we have all become visually literate-that we know how to "read" a picture. Schwartz contends that viewing images is not intuitive but is a skill-based activity which does not lend itself to context-free semiotic analysis. As no clear analytic method for this type of data was found analysis was iterative.
The main author watched each video soon after completion initially with the sound on. It was quickly recognised that each participant T A B L E 1 Videoed participants, diagnosis and consent.

Age
Acute condition  The main author undertook the primary analysis and then the initial interpretations were shared with JB and RB who discussed and tested preliminary thoughts, developing and sharing insights as the data collection and analysis progressed.

| FINDINGS AND DISCUSSION
As this is a methodological paper only three short video narratives have been selected that best represent the layers of meanings that were found within the narratives. These layers of meaning bring attention to other forms of knowledge gathering, alongside words, by acknowledging that the body is a reliable indicator of the workings of the mind and that through our bodies we perceive our environment and instantly interpret it. 34 The power of the following short narra-

| The first narrative layer-Spoken words (Roger)
Roger illustrates the first and most obvious layer of narrative-the words. Roger is the only participant who overtly speaks of their dementia diagnosis. He succinctly explains that it is not the dementia diagnosis that is a problem for him, but the way that he is then treated by those around him.
Roger had been labelled as aggressive, and during our time together it became clear that he felt that people were avoiding him.
Roger chose to lie in bed and not sit in a chair. He was unshaven. He tried throughout our interaction to do up the poppers on his pyjama top. Eventually I offered to help and he told me there was no point as they didn't work. We agreed that nothing seemed to work for him at the moment and laughed a little to relieve the sadness.  Whereas mobility defines the hospital it is immobility of the patient that shapes the processes of the medical care they receive.
The patient is rendered a passive, immobile recipient of care provided by a moving, connected professional working in a hospital that relies on the movement of patients through and out of the physical building. 36 The hypermobility of the professional is interpretable as a sign of power.

| The second narrative layer-Macro movements/expressions (Jane)
The second layer of the narrative was the larger, more obvious body movements that people made. Jane's is a story of chaotic movement.
The chaos narrative imagines life never getting better, and stories are chaotic in their absence of narrative order. 10 Jane was admitted to the acute medical ward because she had fallen over, and as she had been unable to get up, had remained on  Jane's conversation as it leaps from topic to topic.
The chaos of the acute ward appears to have become embodied in Jane's movements and words. Jane is constantly distracted by movements of people and equipment, and the conversation is dominated by background noise. Jane needs an activity frame 37 that could scaffold her, somewhere quiet with people who had time to converse with her-to "build relationships, connect with me". 38 Instead, she is in an environment of noise and movement.
Recognition of this story of Jane's verbal and physical hypermobility can start to explain why people become adversely affected by an admission to an acute hospital. If people cannot stop moving, exhaustion must soon follow. Yet Jane is not physically moving from her chair beside her bed, and the intensity of her movements in the chair are not recognised as a form of communication by the staff around her.

| The third narrative layer-Micro movements (Rose)
The third layer of narrative was identified when the sound was turned off. It was only then that it was recognised that each participant was making not only the obvious larger body movements and hand gestures, but also very small body and facial movements -"micro movements".
Rose's dementia is quite severe which will have affected her cognitive functions such as planning, remembering and language skills. She is in a new and noisy environment and in the last 2 days has transitioned from her care home to the ambulance, to emergency department and then to the acute ward where she is now. The ward soundscape is of voices, footsteps, equipment clattering, and a phone COLLINS ET AL. Entering Rose's story necessitates slowing down to her speed, a speed that the main author automatically assumed must be very frustrating. However, Rose did not appear to be frustrated at experiencing the world at her pace. Reconceptualising narrative through a consideration of movement has the ability to unsettle some of our basic ideas of how we come to know the world; Rose's story illustrates that human beings trying to understand other human beings is not a clear cut business. 35 Slowing down to Rose's pace can lead to an understanding-a quest for a cup of tea that she cannot find on her cluttered table. The inability to acknowledge the juxta positioning of hypermobility and slowness may well be part of the challenge to providing quality healthcare for people living with dementia. The narratives showed that conversational storytelling is a multimodal event and this needs to be reflected in the methodology. 14 The use of videos in this study revealed layers of meaning that could be established when both words and movements were analysed simultaneously-it enabled the visual consideration of embodied selfhood and how this can be displayed; yet it is important to recognise that these videos portrayed only a tiny fragment of a person's inpatient stay. They illustrated only one specific lived moment in time.

| CONCLUSION
There is a corpus of theoretical work that considers bodies and embodiment, 15,40 however less work has taken place on the task of grappling with how we translate these theoretical insights into concrete methodological tools and approaches. 41 This research has gone some way to translate the theoretical into the practical.