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Participant well-being was always prioritised over research outcomes and agenda. Ethical concerns regarding increased susceptibility to stress by people with dementia were considered, and all possible precautions were taken to minimise discomfort and create a conversational situation. No distress was detected during conversations. On several occasions, there were signs of fatigue or loss of focus, and the research conversations gently and immediately ceased.

In the eventuality that a participant became emotionally distressed, protective mechanisms had been developed. An RN monitoring the resident participant while the research conversations were occurring, and interceding should any signs of distress occur to minimise any potential long-term harm arising.

The same sensitivity was extended to all participants to ensure minimal negative impact. Previous studies identified staff concern that complaints or adverse reporting may affect employment conditions or relationships with other staff (Haesler et al. 2006). Organisations can be uneasy about potential adverse reporting on the public image of the RACF (Munn et al. 2008). Both staff and the

organisation were assured that this study would not assess or report on organisational procedures, staff performance, or quality of care provided.

Families expressed nervousness in other studies that potential complaints or negative reporting may unfavourably influence the care of their relative (McCarty 2011; Sandberg et al. 2002). All

participants were assured of confidentiality and advised that they were free to withdraw from the study without the need for an explanation at any time should they have concerns.

Participants had the opportunity to choose a pseudonym to protect their identity. Most participants independently chose a pseudonym, while others preferred the use of their real name as they saw no need for anonymity when they had freely opted to participate. Several residents identified with their preferred name rather than their formal name in everyday use and chose this as their pseudonym. With regard to overall anonymity, it was possible that participants or the organisation may be identifiable in researcher photographs. The Care Manager of the facility and participants were shown all photographs with the opportunity to screen or refuse individual photographs for

publication or presentation purposes. The right to veto the use of photographs without explanation was honoured, and all external street views were excluded at the request of the Care Manager. Careful consideration was given to the potential issue of elder abuse expressed to or suspected by the researcher during the research. While my responsibilities and mechanisms available to report elder abuse were established as part of the research design and ethics process, no abuse was suspected while I was in the setting.

The research was carried out within the parameters of the ethics approval, with some minor changes to the research design and plan. Sourcing the architectural drawings and brief were challenging and delaying. Eventually, the planning approval and working drawings were obtained directly from the Local Council.

My original intention was to include the Chief Executive Officer (CEO) and the architect of the RACF in the study to discuss their perceptions of the design intentions and the resulting building in regard to enhancing lived experiences of residents living and dying with dementia, their family, and care staff. While the CEO approved the study and access to the briefing documents and drawings, he declined to be directly involved in the research.

Further, once I obtained the drawings, I found that the architectural firm no longer existed, and the architect was uncontactable. The architects’ and the CEO’s involvement were not a significant aspect of the study, but it may have been useful to understand the rationale for the layout, in particular, the large, central dining room and double-loaded corridors described further in Chapter 5.

I had also intended to analyse the architectural brief, but there was no formal briefing document. Instead, there was a series of briefing emails between the architect and CEO of Aged Care Inc. In my professional experience, I found that this is a relatively common occurrence in the design of RACFs especially when the architect has designed RACFs for the organisation previously. Copies of the briefing emails were provided to me by the Aged Care Inc. Property Manager, providing sufficient information for my analysis.

Other minor changes to the research design include an initial intention to use photographs of residents interacting with staff and family as prompts in conversations, but during my interactions with residents, I identified that this was potentially confusing and beyond their cognitive capacity.

Fieldwork became extended through part-time enrolment allowing more time for reflection, to observe change over time and to build rapport slowly, but it also increased the risk of participant attrition in a frail population.

My research plan was designed for flexibility as had been advised by several researchers in a similar context (Chin 2010; Goodman et al. 2011; Hubbard et al. 2003). Both recruitment and prompted conversations took longer than expected. Several potential resident participants became unwell or died during recruitment. Families visits were, at times, irregular and staff shifts were variable. Building initial rapport was a lengthier process than expected.

During the research process, several prompted conversations with staff were postponed multiple times when the wing was short-staffed, or an emergency had arisen. Some staff conversations took place in two or three instalments when the participant was called away during a prompted

conversation.

Family conversations were frequently re-scheduled, and two family members who expressed interest in participating did not return the consent forms. In addition to poor health, there were several occasions when I arrived for scheduled conversations with residents to find they were in the hospital, on an outing, had visitors, or were showering. There were many weekends when three or four scheduled prompted conversations were postponed. Further delays were caused by several ‘shutdowns’ due to gastroenteritis or other infectious outbreaks in the subject RACF.

4.4 Introducing the world-of-being-in-aged-care