Hearing from people with PPA

So yesterday I ran a focus group with people with Primary Progressive Aphasia and their families. Focus groups are a qualitative research method. They are a means of collecting valuable opinions on a topic or an issue (Wilkinson, 1998). The group discussion allows ideas to unfold and develop in response to the research question. The group can enable individuals to say things in the safety of a group that they might otherwise not say. The researcher acts as facilitator- trying to avoid unduly influencing the discussion but supporting and encouraging everyone to contribute.

Although this isn’t my first rodeo (group) it certainly felt a bit like that in the run up. Recruitment was slightly more tricky then anticipated- hampered by a delay in getting ethics approval due to the unforeseen complexities of this altogether tricky process (refer back to previous posts on this topic as I really don’t wish to bend your ear on this delicate subject in this post!). But really I don’t know why I was surprised. Groups are often harder to recruit to than anticipated – even clinically. Either you have too few (they all take holidays that week or they just DNA) or the next time there are just too many clients. Or the clients don’t gel or they gel too well and you can’t get the work done!

As with any good group, however, I should have trusted in the group milieu. For while I completed the travel expense reimbursements and checked all the consent paperwork was in order the group was already forming, morphing and taking shape. People introduced themselves to one another, they shared diagnosis, experiences and made connections. They shared opinions on the refreshments- what sandwiches and crisps they preferred or whether the weather was too hot for traveling distances across London or via train.They even prompted one another to repair upside down name tags!

As always I am reminded of the importance of the little things. The things I feel are not that significant can have a much bigger impact. Refreshments are a little reward and a thank you, but also a great neutral way to relax and start chatting. Name tags make things a lot easier- especially for people with PPA who may find it easier to read aloud or have difficulties with word recall. And really we are in England- whatever your age, nationality or background the weather and a cup of tea are scripted social conversations that can break down any barrier. And as the group came together to discuss the topic I had introduced the conversation seemed to flow and grow. And well, the content of that conversation is something I will share with you in future publications…..


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