How would I be able to understand their daily lives when they were only willing to show me their kitchen and carefully drew boundaries around what they liked to talk about? I only had six months to do fieldwork; would I be able to establish a level of rapport to be considered an ‘insider’?

My research looked at the daily life experiences of couples living in northern England, of whom one has dementia and comorbidities and the other is the informal caregiver. ‘Entering the field’ involved gaining permission to visit local community centres, dementia activity groups, and well-being cafes where I could talk to possible participants about my project. Once people showed interest in participating in the project I had to build rapport with them in order to negotiate access to their experiences, lives, and homes. But even after the couples had given their consent to take part in the project and I had been visiting them at their homes for a couple of weeks, I still felt like I was negotiating access.

I had been taught that gaining access is a time-consuming process. The rule of thumb seems to be: the longer you spend in the field the better the quality of your data will be (DeWalt and DeWalt 2010). Anthropologists have identified turning points in their research process, events that allowed them to move from the outside to the inside (Pitts and Miller-Day 2007). Kathleen M. DeWalt and Billie R. DeWalt (2010) point to Clifford Geertz’s (1973) description of his attendance of a Balinese cockfight as a classic example of this. But perhaps, instead of seeking out such turning points, we should look at the back and forth of negotiating access as a valuable and informative process in itself.

Getting to know Hamid and Aaisha

When I arrived, Aaisha and Hamid greeted me, and Aaisha invited me to sit down on the couch.[note 1] When I explain the project to them, Aaisha said: ‘I think it is strange you like to know all these things about people. You like to know these things so you can help people, right?’ I explained that I would also like to share the outcomes of this project with service providers so they could consider how to improve their services.

After our first visit, Hamid and Aaisha decided to take part in the project, and signed the consent forms. For our subsequent weekly visits, Aaisha asked me to call them before every visit so she could confirm the appointment. She also repeatedly asked me questions about my family, personal beliefs, and lifestyle: ‘Are you married? Does all your family live abroad? Are you religious? Do you go to church? Do you cook meals? What type of meals do you cook?’ The answers never seemed to satisfy her, as after one question another always followed.

I wondered whether she was testing me by always asking me these questions and requesting that I call her before every visit. Was she checking if I was trustworthy and whether I would keep my word? I learned that in the past she had had a difficult time contacting service providers. They would sometimes promise to visit or ring her back without doing so. She also elaborated in one of our interviews that she had been trained to be a good housewife and housekeeper; these comments told me that the home was an important space for her, one that she saw it as her domain. It was a place that she cared for and for which she felt responsible. This feeling may have grown even stronger now that she was the main caregiver for her husband and their life revolved around their home.

I felt like I was stuck being an outsider: I had to keep negotiating access to their home and life, which depended on Aaisha’s approval. But I also began to understand what the home meant to her and how she decided whether I was a trustworthy interlocutor based on her past experiences and the values that were important to her.

The feeling of being in the space between inside and outside continued, even when I was allowed into the home. In particular, the way that Aaisha set clear boundaries regarding which part of the home they would allow me into showed me that I was not yet fully trusted. Our visits only took place in the kitchen or outside of the home. Hamid once offered to show me more of the house but Aaisha stopped him. The boundaries Aaisha kept regarding their home also became visible in the photos they took as part of their photo diary. I asked all of the participating couples to take pictures of subjects or objects that were part of their daily routine. Hamid and Aaisha’s diary only contained pictures taken in the kitchen except for one picture of their TV in the living room. Furthermore, they chose not to give me permission to publish the pictures.

Home is closely related to who we are. It plays a role in our experiences and is a bearer of our identity as it stores objects and memories that symbolize part of our identity (Chaudhury and Rowles 2005). We only provide people access to our home when we feel comfortable sharing with them who we are. How people set boundaries for health care in their home is a pertinent example of this, as they will decide which rooms health care professionals can enter and which interventions and treatments can take place in those rooms (Twigg 2006).

In my research, Aaisha’s boundaries told me that she considered me to be an outsider, and this was possibly influenced by her past experience with support workers. In health studies research this is a known phenomenon and James McKillop and Heather Wilkinson (2004) advise researchers to take into consideration past experiences participants might have had with service workers entering their home. Hamid did not have an active role in the process of negotiating these boundaries; Aaisha was the decision maker, and perhaps she took up this role because of Hamid’s dementia. In such couples, decision making usually shifts to or stays with the caring spouse (Samsi and Manthorpe 2013). It is also possible that Aaisha was always the decision maker on who had access to the house, in connection with her role as homemaker.

At first, I felt frustrated, insecure, and a bit worried about the ongoing negotiation. But eventually I realized that this ongoing process over access to the home and their lives provided me with a rich source of data. It gave me insight into their values, past experiences with services, the importance of their home, and the dynamic between the couple (Bjørnholt and Farstad 2014). Reflecting on the process of gaining access and the status in the outsider/insider dichotomy has provided me with useful information about how my interlocutors manage social relationships and draw boundaries. As anthropologists, we can learn a great deal if we approach negotiating access as an important source of data instead of a challenge to be overcome.

About the author

Denise de Waal is a final year PhD student in dementia care at the University of Bradford. In her current project she looks at the daily life experience of couples of whom one has dementia and comorbidities and the partner is the primary carer. She uses interpretivist ethnography and spent six months paying weekly visits to five couples in a community in northern England to do fieldwork.

References

Bjørnholt, Margunn, and Gunhild R. Farstad. 2014. "'Am I Rambling?" On the Advantages of Interviewing Couples Together'. Qualitative Research 14 (1): 3–19.

Chaudhury, Habib, and Graham D. Rowles. 2005. 'Between the Shores of Recollection and Imagination: Self, Aging and Home'. In Home and Identity in Late Life: International Perspectives, edited by Graham D. Rowles and Habib Chaudhury, 3–18. New York: Springer Publishing Company.

DeWalt, Kathleen M., and Billie R. DeWalt. 2010. Participant Observation: A Guide for Fieldworkers. Lanham, MD: Rowman Altamira.

Geertz, Clifford. 1973. The Interpretation of Culture: Selected Essays. New York: Basic Books.

McKillop, James, and Heather Wilkinson. 2004. "Make It Easy on Yourself! Advice to Researchers from Someone with Dementia on Being Interviewed'. Dementia 3 (2): 117–25.

Pitts, Margaret Jane, and Michelle Miller-Day. 2007. 'Upward Turning Points and Positive Rapport-Development across Time in Researcher–Participant Relationships'. Qualitative Research 7 (2): 177–201.

Samsi, Kritika, and Jill Manthorpe. 2013. "Everyday Decision-Making in Dementia: Findings from a Longitudinal Interview Study of People with Dementia and Family Carers'.  International Psychogeriatrics/IPA 25 (6): 949–61.

Twigg, Julia. 2006. The Body in Health and Social Care. Basingstoke: Palgrave Macmillan.