Up until quite recently I have basically avoided having to include parents in my research, or, at the very least, I’ve dismissed their relevance. I put this down to a combination of factors:
- At it’s core, my research involves developing a health screening app for young people and GPs i.e. young people fill it out and GPs review a summary, so parents didn’t seem to be a stakeholder at all.
- Having worked primarily with young people for almost all my working life, my default lens is very ‘youth-centric’, recognising and respecting their independence and expertise in their own health.
- I’m not a parent and perhaps less aware of the critical role and perspective parents have in the health and wellbeing (I freely admit, this is naieve and rather stupid!)
- I was scared that adding another stakeholder group (along with young people, GPs, and practice staff) would create a lot more work (e.g. from literature search to data collection, analysis and write-up (more work!?!).
- Concern about getting conflicting needs and requirements to that of young people and GPs.
Thankfully my supervisors gently, but firmly, suggested that I include this group. Parents are, in fact, a significant stakeholder, in particular for the under 18, where parents still book their appointments, take them to the appointment and often still go into the consultation with them and, for some, are literally their voice with receptionists and GPs. Thus even though parents will not be using the app themselves, they act as gatekeepers and making the app acceptable to them is critical (ie otherwise they won’t allow their child to use it).
Thankfully, I had included parents in my original ethics submission (‘just in case’) and I was able to organise and run a brief workshop with a group of 8 parents of young people aged 14 to 25 last Thursday.
Some key insights from the evening:
- Perhaps not surprisingly, the extent to which parents were comfortable with their child talking about psychosocial issues alone with their GP varied between parents and depending on the topic. Influences on this seemed to be their own childhood experience, existing medical conditions (e.g. Aspergers’) and the perceived maturity of their child.
- Most parents were not comfortable with their GP talking with their child about drugs, mental health and self-harm – even though they recognised these were issues facing young people.
- Central to how comfortable parents were with their child speaking to the GP alone about psychosocial issues was the extent to which they trusted their GP. This certainly reflects other research.
- Understandably, there seemed to be a tension between wanting to be entirely informed about the results and with the need to respect confidentiality. While most understood the survey responses would be confidential, they liked the idea of getting an indication from the GP if there were any areas of concern (e.g. on a scale of 1-5), even though this might simply result in anxiety of not knowing exactly what the issue was. Reassurance that any issues were being appropriately followed up on seemed important.
- Identified the app as a way to bring parents and child together. While this isn’t the central purpose of my research (if anything it’s about bringing GPs and young people together), it is interesting that this came up (and perhaps also reflects technology’s broader potential of bringing all sorts of people together).
Overall, there was a sense that if parents were reassured about the content, purpose, follow up and privacy/security of the app they would allow there child to use it, even though there was some discomfort about the topics.
Last week I finished my interviews with general practice staff (practice managers and receptionists). I interviewed 11 people in total. The interviews took me across Melbourne into a range of practice types and sizes – from a small (3 GP) practice in the generally more disadvantaged (lower socio-economic) western suburbs to huge (16GPs) corporate, multi-site practices in the north and east.The aim of these interviews was to understand how the administration staff work, how technology is currently used and to investigate how they would see a pre-consultation screening app working in their setting most effectively.
I’ve spent the last week listening back to the audio and here are some reflections:
- Firstly, I now have much more respect for this workforce: These are highly competent and professional people who have to juggle multiple demands, from (the wide range of) patients to owners to GPs.They are also generally highly committed and engaged in their work – quite a few having worked at their practice for 10 or even 20+ years.
- Practice managers have the potential to be the conduit and gatekeepers of if and how innovations or changes are introduced and implemented into the practice. So it’s important to be able to articulate and argue the benefits of the new practice to them, their GPs and their patients.
- Apart from the clinical and booking software (and the automatic importing of electronically received medical test results), technology uptake and integration is slow (the amount of scanning that is done was a surprise). Perhaps because there is so little time and little incentive to test and implement new technology. All practices still use paper forms for new patients, though there is a recognition that this needs to change in the future with a few introducing online bookings and facebook pages.
- SMS seems to be widely used for appointment reminders and, in some, to notify normal results – integrated into the clinical software and viewed as making their job easier.
- Patient satisfaction and care is important, but so is ensuring staff are happy and any new innovation does not impact too negatively on their capacity to see patients (and earn money).
- Some GPs will not want to be part of the pilot. These are ‘wait and see-ers’ – they don’t want to commit to new practices without first seeing benefits and that processes have been worked out.
- Parents are generally the main point of contact for young people under 18; often parents will attend reception when they come in and reception don’t even really talk to them (or have their contact details) – this has implications for my final study, not least including consent [more of this in future posts].
- All practices work in slightly different ways, and have varying willingness and flexibility to incorporate new ways of working. This seems entirely justifiable! In a sense this is the most challenging (albeit realistic) finding – as it means it presents a real dilemma on how I design my final study…[more of that in future posts too]
mdxdt @flickr, creative commons
At the moment it feels a little as if I’m in a transit lounge of my PhD – not necessarily in a bad way. I’m not sure if this is the most apt analogy, as it implies waiting and inactivity, when actually it’s much more active that that; I’m going back to the literature, reviewing my data, reflecting if my original design for the final study is the best way to go – basically working out which is the best plane to catch (or maybe the best plane to fly!). It’s easy to feel a sort of inertia, or the creeping alarmist thoughts that ‘I am going backwards’, ‘I have achieved nothing!’ etc. but part of me also realises this is actually really important and productive time.
I was (incredibly) fortunate to work for many years at a progressive non-profit organisation that used evidence, technology – and participatory design – as core tenants of service development and delivery. This was something that had been ingrained as part of the organisation’s culture and business plans.
I now work at an organisation that has come late to the online space and have no understanding of the benefits and necessity of the involvement of their clients. I find myself having to convince colleagues – and the organisation – why we should be growing and improving our online presence and service, and doing so with users meaningfully involved. I’m surprised at how difficult I’m finding this – and how frustrating.
Perhaps participatory design isn’t as wide-spread as I assumed – and is still mostly confined to web and marketing companies. For me, it’s about going back to basics, and explaining the benefits of this strategy on budget and outcomes (erm, once they are identified, but that’s another post!). Given that my PhD will be using participatory methodology, I guess this a great opportunity for me to get a more detailed understanding of the evidence (is there any??! – is it more of a intuitive kinda of idea at the moment).