Table 4 Detailed summary of Target behaviour 3: Offering RGCS to patients.
Providing pre- and post- test counselling | |||
|---|---|---|---|
Barrier | Exemplar quotes | Enabler | Exemplar quotes |
i Low consumer awareness or understanding of RGCS TDF: Environmental Context and Resources | Most people have no idea what [RGCS] is when I bring it up. They always go, ‘isn’t that the Down syndrome testing or the harmony [NIPS]?’ GP07 | HCP building consumer awareness TDF: Social Professional Role and Identity | Most patients don’t know anything or much about it, so it’s a good opportunity to talk about that it’s something available now if they are interested in doing that. GP29 People are very receptive to the message from us [GPs] and I think the same with this sort of genetic screening, I mean people know about it, but I think we are very trusted to encourage people to go through and get the testing done. GP01 |
Raising public awareness (campaigns, programmes like MM) TDF: Environmental Context and Resources | It comes down to that poor time allocation we get given with our client face-to-face and therefore it needs to be raised at that social media level, whether it be radio, flyers, Facebook whatever format you can think of. SHNurse20 Raising the profile [through MM] has been helpful, I think it has made having the conversations easier. Among my colleagues as well as consumers and among midwifery staff. GP25 | ||
Word of mouth TDF: Social Influences | It’s awareness and whether they have got friends that have done the same test before. I think a lot of people now rely of social media and their friends to tell them…or convince them rather than us health professionals. GP24 | ||
ii HCP concern about pre- test counselling ability TDF: Beliefs about Capabilities | Because you don’t know what sort of questions or queries are going to come up from the patient’s end…So when you might have two patients every couple of weeks who comes in for family planning it can be difficult to remember all the details. GP11 | Resources for HCPs (GC support and referral pathways to genetic services) TDF: Environmental Context and Resources & Social Professional Role and Identity | I took notes while she [the GC] was talking. And I still refer to those little dot points that I made when I’m educating patients themselves. I obviously want to make sure that I’m giving them the right information and making it easily it’s easily digestible for them. GP27 Sometimes certain questions that they ask is beyond our knowledge skill, and then that’s when we have to call upon the genetic counsellor to come in and give their advice. GP06 |
Seek assistance from peers TDF: Social Influences | If I know one of the doctors in the practice is seeing younger people and doing something I would probably ask them just because they are very accessible and easy. Or otherwise, a trusted senior colleague, one of the obstetricians of something like that. GP21 | ||
Confidence through practice TDF: Skill | The more you do it, the easier it gets. GP11 I’ve been able to develop my own very simplistic way of getting the information across. MW08 | ||
iii HCP concern about post-test counselling ability TDF: Beliefs about Capabilities | I think the main thing would be concerns from the GPs about having to possibly counsel someone if they had a high-risk result. GP02 | Access to GC support TDF: Environmental Context and Resources & Social Professional Role and Identity | As long as it’s made very clear that if someone does have a high-risk result, they are automatically referred to genetic counselling, I think that would take a lot of the GP concern away. GP02 Having good genetic counselling back-up, is the really important thing because as I said I can’t do that. Because it is actually really difficult work and really time-consuming work to do and it is very hard to fit it in when you are not an expert. GP15 |
iv Time constraints in consults (antenatal and general visits, and for CALD patients) TDF: Environmental Context and Resources | With the antenatal appointments that’s a massive appointment and it’s hard to get through all the stuff…There are a lot of different things that are available and it’s not much time to discuss what each of them provide and if they wanted to do those tests or not. GP29 | High consumer health literacy TDF: Environmental Context and Resources | When I start screening I say, ‘do either of you work in health fields? or have you done grade 12 biology?’, and if someone pipes up and says ‘yes’, I’m like excellent, (laughs), because I know they’re going to get it straight away. GP13 |
I would say time because you’ve got to do a mini genetics lesson in the middle of your consult…I can’t actually practice a good standard of medicine in six minutes, so, clearly time is a limiting factor in a lot of general practitioners’ lives. GP13 | Financial incentives or reimbursements TDF: Environmental Context and Resources | if we could find any way to increase GP antenatal care [billing] that would be really good, because we do get it hard there. GP18 | |
I do know that for some families when they do go onto the website, they do find it difficult to navigate because of the language barrier, then I try to spend more time explaining the project, sometimes because of time limitations it is not possible. CG16 | Having RGCS offered pre-conception TDF: Environmental Context and Resources | I find the first antenatal visit is a very long consult in itself, so having had the Mackenzie’s Mission or the carrier screening discussion done or declined, either way, it’s sort of that one less thing you have to do at the first antenatal visit. GP07 | |
There’s certainly things about the Mackenzie’s Mission website - I don’t know whether it’s available in other languages - and yeah so I think that would be a barrier. But I would still tell them to come and see me and sit down at the computer and translate it for them with the translator. MW08 | Simple and supported process for HCPs TDF: Environmental Context and Resources | It’s time consuming to have the discussion, and the nice thing about Mackenzie’s Mission is I can talk about it as an option…but if they’re interested I can send them to your website and they can get a lot more information from that. GP15 | |
The other thing that I really like is the way it’s all done online, you don’t actually have to spend a lot of time talking about potential outcomes of carrier screening… And that will be really attractive to non-genetics professionals, there’s no way a GP can do carrier testing in 15 min GC09 | |||
In terms of ease, it is just trying to fit it in with whoever comes in and sometimes when you are time pressured it can be difficult, but I found that not to be the challenge because I am there just to provide them that link and the information and ask them to go away and think about it. I give them a number [for a GC] if they want to ask any questions about it. GP19 | |||
Staging the offer process TDF: Behaviour Regulation | I tell them about it, get them to go and have a look at the website, and then get them to book an appointment and we talk about it as a separate consult. I always wanted to make sure that their partner was on board as well before going ahead. GP01 | ||
Resources that help explain RGCS (website, diagrams, videos, auto fill request forms) TDF: Environmental Context and Resources | I’ve got the 30 min time allocation with the client and I’m trying to fit in MM so I actually handed them my phone and showed them the little video, and they could consume that information while I would be setting up for an examination. I felt that was a better recruitment process than me trying to repeat myself with every potential client. SHNurse20 I find the time is one big factor and I have developed some diagrams which I keep with me. I find diagrammatic representation much easier than talking through these things. Especially for the population who are coming from an English-speaking diverse background. CG16 It’s always nice to have a form that works with whatever software the GP’s using, [the form] is auto-filled and then that record is still in that patient’s notes when we’ve sent it. I think if this was going to roll out, that needs to happen. GP05 | ||
Well-informed about RGCS TDF: Knowledge | You want to be fully informed on the concept in the first place, so that it makes the consult effective, quick, the information is there, questions can be answered easily without trying to look things up. GP07 | ||
Concerns around regional accessibility TDF: Environmental Context and Resources | My big thing being rural is, I grew-up in Melbourne where you have great access to services but coming to [a regional town] I realised there is a lack of access to opportunities. SHNurse20 | Self-collect samples and telehealth TDF: Environmental Context and Resources | I do telehealth sometimes with countrywomen…so I’m going to try and incorporate more into the country women there, and it’s something that I would have to post out to them. I don’t know whether that would have any issues, it shouldn’t do because the packs are sent out and it’s self-doing. In theory it shouldn’t, I just have to post the paperwork out to them. MW04 |
Dedicated outreach services TDF: Environmental Context and Resources | I think we are going to have to develop strong community programmes, whether that is at school…or we have breast screen vans rolling into community and whether we do this with genetic carrier screening to create awareness. CG17 | ||
Perceptions of patient receptivity towards RGCS | |||
|---|---|---|---|
i Financial barriers TDF: Environmental Context and Resources | The barrier in the past has always just been cost because it was so expensive. GP01 Cost is probably a big thing. I have been surprised by peoples probably lack of interest in it, and then if they have to pay $600 on top of that, I think it would be quite limited. GP30 | Funding for RGCS TDF: Environmental Context and Resources | It’s probably unreasonable for it to be this great, like free and testing so many things but I think there would be really wide uptake if it was. I think people have to pay for it even a little bit it won’t be as popular. GP28 …part of the cost should include the genetic counselling, I don’t think it should be an extra. So, everyone pays X amount for it but that includes the genetic counselling for those who need it. GP15 |
ii Patient beliefs TDF: Environmental Context and Resources | Sometimes religious beliefs come into play. I see populations and certain ethnicities who would not want to go ahead with these sorts of things. CG16 It’s [culture] so ingrained, especially the first-generation migrants, sometimes that trumps medicine, so we can go blue in our face explaining over and over again … ultimately, it’s just respecting their beliefs and trying to make the best out of it and ensuring a positive outcome. GP06 | Framing conversations around the benefits of knowing carrier status TDF: Skill | Sometimes there are people like them who are worried because in Islam we don’t do a termination very easily…but I said ‘look even if you don’t go for a termination, it sets you up so that you are aware of what happens afterwards’. GP18 I might mention that so it’s not necessarily that you would terminate the pregnancy but you might choose to learn a bit about the condition, to talk to specialists, to join a support group, peer information and that sort of thing. GP25 |
Patients taking up the offer TDF: Reinforcement | All but two people I’ve discussed it with have ended up taking up the opportunity, which is really good. GP26 | ||
The reason people chose not to was they either came from a faith tradition where that was not something they wish to enquire about or even if they didn’t have a faith background tradition, it was just they didn’t know what they would do with that information and they were aware it was going to create angst and issues for them. GP25 | Sense of reward for offering RGCS TDF: Reinforcement | It’s fantastic, everyone’s been excited about do it, in fact one of my couple’s is already pregnant, have just come in today because they’re pregnant, so that’s very exciting. GP01 | |
iii Not knowing when patient’s take-up testing TDF: Reinforcement | I don’t know who actually decides to do it until I get their result, however long later. GP02 | Altered when patient supplies a sample TDF: Reinforcement | We know how many forms we’ve given out and slowly the results trickle in but getting an idea of how many of your patients have taken up the screening is nice to know. GP07 |