Interview process

Open-ended interviews were conducted in this study which provided the participant with the opportunity to fully explain their experience of the phenomenon. These interviews also allowed me to ask open-ended questions such as: Can you tell me about a time when you took a risk? which are broad in nature and allowed the participant to move freely in their description of their experiences, providing greater latitude in the answers provided. Over time they became one long story which continued with each visit. This is a benefit of a longitudinal research design which allows data collection to amass over weeks, months, or years.

The interviews took place at a time and place of the participant and their family, and were conducted in a personal and congenial manner. They were all held in private homes until several participants moved into care facilities where the subsequent interviews were conducted. In the case of married participants, their spouses were present, two participants had their children accompany them and three people who lived on their own conducted their conversations independently. Morning and early afternoon were the preferred times for meeting. Six people in total completed all four interviews, one daughter withdrew her mother after one session, another lady

declined to continue after two interviews and two people died during the progression of the study.

Before interviews began I reflected on van Manen’s (1990) advice to researchers which was:

 stay close to the experience as lived

 when asking what an experience is like, it may be helpful to be very concrete  ask the person to think of a particular instance, situation, person or event

The questions are broad, open-ended and invite a response:  Can you tell me of a time when you took a risk?  What was that like for you?

 How did it make you feel?

This unstructured method opened up an intimate dialogue between two people, and its flexibility accommodates any new aspects that may emerge or be introduced by the participant. This was important because the communication abilities of people with dementia may be impaired, and I determined that to provide time and support for the person provided the best opportunity for stories of risk to emerge. In their published interviews with people living with dementia, Killick and Allan affirm this, stating that time is needed when engaging in discussion (2001). This time allows rapport to develop, and will enable the person diagnosed to feel comfortable to share some of their most personal moments, and some deeply held, rarely shared

memories. People with dementia are traditionally positioned through their own and other’s talk in ways that can disempower and this highlights the importance of relationship and trust within dementia care (Killick & Allan, 2001; Purves, 2010; Sabat & Harré, 1992).

Being prepared emotionally for the conversations was important for me, as dementia is associated with a variety of impairments of language and communication, some of which may be unexpected and possibly confronting. I approached each conversation with an open mind, vigilant not to miss anything, alongside a determination not to talk too much in order to fill in the gaps. Flick (2000) emphasised the importance of preparation for each meeting and in order to capture the best possible data, I have developed a pro-forma of the questions from the first conversation to the fourth. Building on what had been said before situated both the participant and me in the same place and ready to begin again. Kvale (1996, pp. 1-2) calls this “data

capturing” and literally it is an interview or an exchange of mutual interest.

Interview General Questions Personal Questions

1. Setting up the story

Can you tell me a story about a risk that you have taken in your life?

What was that like for you?

How did it make you feel?

2.Situate in the here and now Use other words such as manage/ challenge/cope Learn their language as people do not consider themselves to be risk-takers

How are you going? (indirect reference to dementia)

Build on what has gone before, and engage with the present needs and wishes surrounding risk

Pick out ‘risk ’parts of interview one and revisit Look at present risk and look for a transition in comparing to the past

Ask to retell a story and develop it- how does it impact on decisions today? What does it teach you today?

Will you do anything today that you consider is risky?

Can you tell me the story about coming to Australia again? What was that like for you and your family? How did you manage that? And what happened next? I suppose you use those skills now?

3. Looking for transitions Close the door on general topics- be very specific

How has risk taking changed for you? What could occur today that would be risky? Why is that risky? What would you do? What leads you to that decision? (never ask why)

Are there any other possibilities? Who would you consult, and why? Ask about the contrary case here:

Tell me about a time when you wanted to take a risk, but didn’t. Why didn’t you?

Do you feel that you would do that again?

4 Review life story for critical events. Ask the part. To recall those events. Revisit the ‘risk’ questions

Can we talk about risk again today for the last time? Pick key events which were ‘risky’ Can we talk about the time that you took risk in your life?

What was that like for you? Looking back, would you do that again?

Why would you take risk today?

Why do you not take risk today?

Is there anyone, or anything preventing you from doing so?

Interview General Questions Personal Questions

Focus on the future

Will you continue to do that, do you think? Do you take risk today? Explore- how, when? Would you like to take a risk today?

What about the future? Do you see yourself taking a risk in the future now? Or ever?

How does that make you feel?

At the end of each conversation, I referred back to van Manen in order to ensure that the participants’ purposes and mine were mutual. For van Manen the conversations serve two specific purposes: firstly, as a means of exploring experiential narrative material in order to develop a richer and deeper understanding of a human

phenomenon. On a more personal level, the conversation becomes a vehicle to develop a relation with a partner about the meaning of an experience (1990, p. 66).