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…..

 

My wonderful consensus group! (and by that I mean the wonderful participants)

I am writing an extra special post this week to thank all the amazing speech and language therapists (SLTs) who participated in my consensus group on Tuesday afternoon. The group was hosted by the Dementia and Mental Health Clinical Excellence Network. I was lucky enough to have 36 extremely enthusiastic and interested SLTs who attended the session.

The meeting used Nominal Group Technique- a method of gaining consensus without undue influence from one particular person or a couple of people. This involves asking people to generate ideas to a question (in silence) and writing these down. Then going round robin style to share ideas, clarifying and discussing them briefly before individuals silently choose their top 8 ideas and write them on separate cards. Participants are then asked to rank the ideas individually. 8 being most important, 1 being least important (putting the cards away as they make decision), then 7& 2, 6 & 3, 5 & 4. These are then collected and collated for analysis. The ratings can be reviewed for further rating and ranking to refine the consensus process.

Prior to the meeting I had felt anxious that the SLT participants may find it boring and tedious and generally a methodological blah! But to my surprise I had really positive feedback. Not only did people highlight that being involved in research made them feel they were being heard but also that the process itself was clinically useful. People described feeling that they had really reflected on their practice and what the key components of the intervention are that they themselves deliver. They felt they refined their motivation and rationale for this activity. A number of people also reported enjoying the process of hearing others opinions and felt this was a great way of learning.

I hadn’t necessarily anticipated the clinical sharing and learning component of this exercise –  of sharing knowledge and developing skills. The committee of the CEN suggested they may even use this type of method again for workshop tasks! What a great experience. I am so grateful to have had this opportunity to integrate a real breadth of clinical expertise into my research project. Now to analyse the data! Argh!

The next hoop- getting research off the ground.

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Big news:
Me: I have been successful – my research project has been given ethical approval!
You: Fantastic, congratulations, so when does your study start?
Me: Well…hmmm…yes… did I mention R&D approval?
You: Huh? What’s this?

So let me explain- having been awarded ethical approval by the Health Research Authority to conduct research in the NHS I am now in the process of communicating with each of the individual Research and Development departments within each NHS Trust. This should be moderately straight forward as the appropriate paperwork such as the mysterious and complex “schedule of events” has also been approved by the HRA. Having said that I am slightly dreading negotiating the details. In general the trusts I am working in have tiny weeny speech and language therapy departments that don’t necessarily sit where the research is happening – for instance in one trust (as in many) the SLT is managed by the physical health trust next door to the mental health trust where the research is happening. Not an unusual arrangement for us. I wonder if these awkward arrangements disadvantage us in research- we will see.

I am pondering the future- anticipating obstacles so I can be more prepared! I am continually liaising with stakeholders (such as the amazing SLTs who are enthusiastically preparing to host the study) and persevering. In keeping my chin up I am able to view things more broadly – I feel I am developing my skills and learning heaps and am sharing all this with anyone and everyone who will listen. I hope that sharing these experiences and unforeseen challenges can support more SLT researchers to conduct more research in the NHS itself. The NHS is a great resource and patients can directly benefit from research happening within the organisation. I heard somewhere that patients seen in a trust where (NIHR) research is happening have better outcomes. And better outcomes are the reason I am ploughing determinedly onwards!