We grappled with three big subjects, deafness, dementia and communication, for our project Knowing What to Say And How To Say It.
Project planning against the backdrop of Covid
When we set about planning our project, we had quite a challenge on our hands. We knew we wanted to get input from lots of people with different experiences and there were all sorts of ways we could do this. After thought and discussion, we created a project plan involving a questionnaire, focus groups, and one-to-one interviews. This combined approach, we believed, would allow us to gather insights from a range of people with differing experiences and perspectives.
However, as it happened, the start of the project coincided with the onset of the Covid pandemic. This quickly disrupted our plans as it became apparent that it would be more difficult to set up meetings with prospective informants and to conduct face to face interviews.
Consequently, we decided that our study should become more restricted in its scope than we would have preferred. It also meant that our questionnaire would have to work extra hard as it was possible it would be done without the benefit of in-person focus groups and face-to-face interviews to help us explore specific issues more deeply.
Adding to the challenges, as our discussions took shape, we became increasingly aware that the subject of our inquiry would involve getting people to talk about quite sensitive issues. Medical conditions that have serious implications for your life can be hard to come to terms with and we wanted to tread with care. We also recognised that people can take time to adjust and accept the onset of health conditions and consequently can be a reluctant or reticent about talking too deeply or too openly about difficulties and challenges.
However, at the same time, we felt our inquiry was a worthy one. It could help to identify the best way to find the right words and the right occasion to talk honestly and openly to a partner or friend. It could identify the kind of settings best suited to the broaching of concern. And it might help with how to go about finding relevant information from agencies or organisations that have hitherto not been on someone’s radar.
Given the pandemic, we focused our energy on the questionnaire. We worked to create questions that would draw out insights while tackling sensitive issues with care. We also had to be mindful not to overwhelm questionnaire respondents with complexity of subject matter or volume of questions.
We knew that we wanted to share the questionnaire with local people in the Stirling area, so at this early stage we also began identifying groups of people who we judged would be prepared to support the activity.
Avoiding bias and discrimination
Our focus was on how hearing loss and memory loss are spoken about. But the other issue we wanted to address had to do with the words people use to describe their condition.
People understandably can have significant concerns about any condition they develop. Alongside this, over the years, the careless use of language when speaking about particular conditions has been both stigmatising and discriminating. We recognised that this was particularly apparent with conditions relating to hearing and memory. We also knew it could extend beyond the individual to family and friends.
Our efforts to employ non-discriminatory language, meant we sometimes faced difficulties in framing questions so as to avoid implicitly stereotyping individuals with hearing or memory issues. We were also aware that the very attempt to use inclusive and non-discriminatory language might lead to the use of words and phrases that to some respondents were overly euphemistic.
Striving for the right words
The words or descriptors that presented us with the greatest challenge were ‘dementia’ and ‘deafness’. Such are the connotations and associations of these word that we were cautious in the way we included them in questions.
With ‘dementia’, memory issues are only one of a number of symptoms that can present. With ‘deafness’, there are a multitude of understandings for what it signifies, including one of the strongest, that it describes a person with very little or no hearing. While that is true for some, it is not true of the big majority.
To avoid introducing distorting elements into the questionnaire, we avoided these words. Instead, instead we referred to ‘memory loss’ and ‘hearing loss’ and in some instances, made it more general still by simply talking about ‘memory’ and ‘hearing’. This left respondents free to make their own connections with dementia and deafness. Which they did.
In many instances, respondents simply swapped in the words ‘deaf’ or ‘dementia’ when using their own words to offer comments. Others reflected on the meaning of the terms. For instance, several respondents drew attention to the fact that an important distinction needed to be drawn between memory loss which could have a variety of causes, and dementia, which could manifest a range of symptoms as well as presenting differently in different people.
Another responded commented: “If deafness is stigmatised, how much more so is memory loss! My memory is fine at the moment, but I think it could be difficult owning up to memory loss at work for fear that it could put my job at risk.”.
Read a full account of the project
Richard Kilborn of Our Connected Neighbourhoods has written a full account of the project, how it unfolded and what we found.