Author: Robin Ray

Setting up the project

Knowing from clinical and personal experience that this study needed to be done and making it a reality, were two different things that took time to come together. Any existing research seemed to be cancer focused and did not sit comfortably with my conception of the research problem. I needed to find a disease context that did not involve extended years of caregiving, but required people to put their lives on hold for at least a couple of years. Several life-limiting disease contexts were considered and rejected after reviewing literature and further discussion with colleagues. The need for wider support for people living with motor neurone disease (MND) was raised in conversation at a social event and I knew the focus for the project had arrived. My enthusiasm soared as I learned more about this devastating disease and began meeting people associated with MND.

An important part of setting up a project is identifying the stakeholders and deciding on the scope of their involvement. In this project, recognising the MND Association as a stakeholder, seeking their cooperation and listening to their views and insights into working with the key informants, was vital to stepping into this new world. The initial discussions with the MND workers were like walking on egg shells. I was a newcomer in their domain and they were protective of their members. Yet, I needed their consent and their cooperation to gain access to participants. Listening and learning while trying not to seem too enthusiastic or blundering into assumptions based on a little knowledge, were the keys to gaining their acceptance and confidence. Several meetings and attending MND events paid off and the researcher /stakeholder relationship developed to the point where the MND Association endorsed the project in a letter to members.

Recruitment challenges. Advertising in the MND newsletter and at an information night for the newly diagnosed seemed the obvious thing to do. Not true, these only yielded one participant from each source. On reflection, several problems were inherent in these approaches. The advertisement in the newsletter was a column embedded amongst other information, was not eye catching and did not include the supplied photograph. Saying a few words at an information night when people were trying to make sense of this new disease was information overload and easily dismissed. Also the pamphlet that advertised the study included a picture of a person surrounded by friends (to impart the notion of support), was too confronting for some people, particularly those in the early stages of the disease. The strategy that prompted people to respond to the study was the letter of endorsement from the MND Association, underlining the importance of gatekeepers to the viability of a research project.

Ecomapping was a familiar tool to me. Knowing its clinical application, I thought it would work as a research tool to capture social support networks over time. Ecomaps are constructed in consultation with the participant and in this study it was a shared process. In discussion with the participant the process begins by drawing a central circle. Traditionally this circle contains a genogram of the immediate family or members of the household. In this study, I was interested mapping the support systems for the patient and their primary caregiver, so I only included the caregiving dyad in the central circle. Next step is to identify people with whom the occupants of the central circle interact, or their social network. Each one of these is represented by their own smaller circle that forms part of a pattern surrounding the central circle. Some examples of network members might be school or work connections, a community group, a friend, a sibling or parents, or in our project, specific health and social care workers. Each relationship now needs to be evaluated to determine the strength of that relationship. Lines are drawn between the inner circle (and in some cases particular people in the inner circle) and each smaller circle. One line represents an acquaintance or professional relationship, two lines represent a closer relationship and three represent a very close relationship. Tension in relationships is symbolised by jaggered lines. In our study, one caregiver also used dotted lines to symbolise relationships with siblings that were emotionally distant.

The use of ecomaps needed to be thought through as I wanted the caregivers to own the process and to have a visual representation of their own support networks. I had to think about how to accommodate participant ownership of ecomaps without increasing participant burden arising from the need to learn how to create ecomaps. Practice interviews using ecomapping to collect social network data were an important part of making ecomapping a useful research tool. Thinking about possible data collection environments, developing contingency plans for locating the ecomap so that it was shared between myself and the participant throughout the interview and making sure pens were available for both, were important considerations. As this study was longitudinal involving three data collection points, I also had to think about how the ecomap data was going to be collected at each time point given the time it took to construct the initial ecomap in the pilot interview. Photocopying and redating ecomaps so that they could be altered rather than completely redrawn appeared to be an effective solution. It was also helpful to use a different colour pen to draw in the changes to social networks at each interview to enable the network dynamics to be easily identified and ecomaps to be grouped according to their time frame. A conscious decision was made to avoid using red pen because of its association with correcting another's work.

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