Styles of communication
In keeping with findings of other studies [12, 13], some parents highlighted difficulties understanding the information imparted during their child’s consultations due to what were seen as ineffective styles of communication, especially amongst diabetes consultants. Indeed, while some consultants were praised for their clear delivery of information, several parents pointed to their excessive use of complex medical terminology which they could find alienating and bewildering. This included 32M who described how “when he [consultant] started going to their whole scientific element of it, I was completely lost” (32M) and 34M who reported how, “he [consultant] speaks about things and graphs and charts and things… I just feel like he’s talking to another doctor or consultant… he doesn’t really speak in my terms” (34M).
In addition to this cross-cutting finding, which is already established in the literature [12, 13, 18], analysis of the interviews revealed structural and contextual factors which could also hinder effective communication and knowledge acquisition during consultations. As we will show, these structural and contextual factors could result in parents leaving consultations confused and uncertain about the issues which had been discussed and treatment decisions made. Parents could also leave with questions unanswered and their own support needs unaddressed. Below, we report these findings in more detail together with parents’ recommendations for how the structural and contextual features of consultations and clinics could be improved to address the problems they encountered. To do this, we begin by exploring the emotional impact of attending consultations on parents and how this could affect their ability to concentrate and, hence, retain and recall information.
Anxiety and poor recall of information
Virtually all parents described the experience of attending their child’s diabetes consultations as stressful and anxiety provoking, with one mother likening this experience “to going into an exam or something… where you feel sick” (06M). As parents suggested, their anxieties going into their child’s consultations arose from their concerns that, despite their efforts to manage their child’s diabetes, their child’s blood glucose readings and/or HbA1c result would reveal a lack of improvement or even deterioration in their glycaemic control. Hence, parents described worrying about being reprimanded and judged by health professionals: “you feel like you’re instantly going to get told off” (02M); “you think you’re going to be ripped to shreds” (35M) with some describing having been rebuked in the past. Parents also described how their anxiety and upset could be heightened if their concerns were realised and their child’s blood glucose control had not improved. In such situations, parents reported experiencing both imposed and self-imposed feelings of failure and of having let their child down, wherein, “you feel like the worst mother that possibly lived” (23M), and “you feel like you’re failing and they [health professionals] sort of point that out to you, and so you do get anxious” (02M).
As a consequence of their anxieties and emotional reactions, parents highlighted how their concentration levels and, hence, ability to assimilate information during their child’s consultations could be severely compromised. This included 24F who reported poor concentration in his child’s consultations because, “of the various stress levels once they’ve given the blood results”; and, in a more extreme case, 21M, who likened her child’s most recent consultation, where an unexpectedly high HbA1c result was disclosed, to “being in a car crash I suppose… you think you remember what was discussed at the time, but you very, very quickly can’t remember.” Indeed, while parents were keen to praise the clinical advice and input from health professionals, most described struggling to recall all the information these professionals imparted to them at the time:
“The advice is normally good, yeah, normally really good. But, like I say, sometimes later on in the day I’m like that, ummpph, what did he say, what am I meant to be doing?” (05M).
Strategies for addressing poor recall of information during consultations
Due to their difficulties assimilating and recalling information, parents highlighted the benefits of receiving clinical advice and recommendations in a written form after the consultation, or indicated a need for information to be given to them in this way: “it would be quite helpful, you know, if they sort of wrote down, you know, the key points that we’re meant to be covering for the next visit” (12F). Others described attempting to overcome their difficulties by “always try[ing] to take some notes” (24M) or bringing along a friend or relative, “because if I’ve forgotten something, then she’ll [mother] remember something” (31M).
In some of the sites included in this study, letters were sent out to parents after the consultations summarising the key action points and treatment changes which had been discussed. This method of dissemination was praised by parents not only because it aided recall of information but also because, as 02F suggested, “if you have it in writing afterwards, you know, it’s typed and you can digest it in your front room” (02F). Parents also described how written summaries enabled them to cascade information to others involved in their child’s care; in 12Fs case, his ex-partner:
“they’re a confirmation of the conversation you’ve had and the settings you’ve changed, and I usually hand them to her Mum so she knows what’s happened, cos she’s not at the meetings, she can see what’s going on.” (12F)
Non-disclosure in consultations and disengagement
As well as hampering their concentration in consultations, parents’ worries about being judged and reprimanded by health professionals led some to omit or fabricate information about their child’s treatment and care. This included 01M’s practice of, on occasions, substituting high/low blood glucose results in her child’s diary with “a fake reading” after “being told off by the consultant and everybody else, the dietitian and everybody else” after a reading of 2.7 mmol/l was noted in her child’s blood glucose records. Other acts of non-disclosure were also reported by some parents, such as by 34M, to minimize the perceived risk of being chastised:
“Sometimes you don’t want to tell them that you’ve not kept the diary and things like that, you know, you’re going to get into trouble… ‘by the way I’ve never followed your advice, she’s been having her insulin after [her meal]’, I wouldn’t tell them, no.” (34M)
In extreme cases, parents described not attending appointments to avoid being reprimanded. This practice tended to occur at crisis points in parents’ own lives which compounded their difficulties managing their child’s diabetes and left them feeling more vulnerable and unable to cope with what they saw as criticisms from health professionals. Such crisis points included the death of a close relative, or, in 28M’s case, separation from her husband, which caused her to be “away in another world, it was quite a traumatic time” and which resulted in her:
“cancelling appointments cause I didn’t want to go to them, I didn’t want to face them, cause I knew his levels weren’t right and I didn’t want to go in, cause you always go into the clinic thinking you’re going to get a row.”
The child’s presence in the consultation
Parents also described how having their child present in the consultation could hinder communication and disclosure of information as well as affecting their concentration and, hence, ability to assimilate information. In the case of parents of infants and toddlers, poor concentration was described as arising because:
“you’re trying to digest some information and learn from some of the questions you have … but when you’ve got a three year old, who’s running about sticking her fingers in sockets and looking for attention, it’s just another distraction that you don’t need.” (24F)
Parents of young children also described how, as well as being distracted by their child, they often found themselves having to leave consultations early and with questions unanswered because: “you’ve got him in your lug [ear] saying ‘I want to go, want to go’ and then him getting very agitated and frustrated and it’s like ‘I have to go.’” (10M)
Limited attention spans and disruptive behaviour were also described as extending to children of older ages. In addition, parents voiced their worries that, as their child got older, they were able to understand the implications of what was being discussed in their consultations. As a consequence, parents described being reluctant to raise certain issues or ask certain questions in front of their child, such as those relating to their risk of future complications, due to their wish to protect their child from anxiety and distress:
“there are some questions that you want to ask and so you try and speak a bit in code but then you don’t know if she’s listening, you know, you want, especially at the beginning, you know, ‘oh if we keep up with this HbA1C are her eyes going to be affected’ and, you’re going, trying to do that, you know, it’s like [whispering] the side effect, ‘what about her, her fingers and toes and her…’, so it’s very difficult to ask anything.” (17M)
Parents also described feeling unable ask to health professionals for reassurance and support in front of a child who “understands a lot more than people realise” (24F; child aged 6 years) because, as 06M explained, they did not want to worry or distress their child by appearing to be worried, vulnerable and unable to cope:
“he [son, aged 6 years] needs me to be Mummy and be really strong for him and say, ‘right, it’s fine we’re going to make’, and you know, and say, ‘yes, we’ll take all this on board and we’ll make all the changes and we’ll get it down for next time’ and I can’t sit there and go, ‘aaaarrrrggghh’ to the doctor or to the nurse because that’s, you’re not going to be helpful to [son's name] at all.” (06M)
For the above reasons, some parents highlighted a need for their child to be absent from the consultation for at least part of the time or to be offered other opportunities to talk to health professionals on their own:
“they need to consider catering for parents with a, a younger child who has been diagnosed and they need to, perhaps, facilitate more of a, a one-to-one outwith the presence of the child.” (24F)
In some clinics, provisioning had been made available for children in the form of supervised play areas. Having opportunities to spend time alone with health professionals was uniformly welcomed by parents who attended these clinics as these enabled them “to get some things of your chest”, and ask questions without worrying about upsetting their child. While parents of older children also highlighted the benefits of having time alone with health professionals to ask questions and discuss their worries and concerns, such parents also suggested that excluding or removing their child from the consultation would be inappropriate because:
“They’re speaking more to her now and trying to get her to answer the questions as opposed to looking to us as parents as being the ones responsible… they’re getting her to understand that ‘it’s your condition you need to start taking baby steps towards being responsible for it.’” (21F; child aged 10 years)
Structural and organizational features of clinics
Parents’ accounts also highlighted other structural and organizational aspects of clinics which could impact on their willingness and ability to disclose information during, and make effective use of, their child’s consultation. In general, parents who attended smaller clinics and encountered the same health professionals conveyed more positive consultation experiences. In particular, these parents highlighted the benefits of receiving clinical advice from health professionals who were familiar with their family set up and personal circumstances and, hence, able to tailor advice to their child. Such parents, including 32F, also described being more likely to adhere to health professionals’ recommendations and follow their advice as a consequence of these personalised and tailored approaches:
“Dr [surname] is good, she understands and she knows the family, she’s known us since he was diagnosed and she knows all of the problems that we’ve had, and she tries to make things as easy as she can for us, she helped me when it was carb counting, it just seemed an absolute nightmare, but she encouraged us to stick with it”.
In comparison, parents who attended larger clinics often described feeling that their child was “just a number” (19M), on a “production line” who was seen by a different health professional on occasion, “who doesn’t know anything about him really” (25M). Parents also perceived the health professionals who worked in these clinics as lacking familiarity with their child and as offering generalized clinical advice as a consequence that is “not going to be about [son’s name], it’s going to be generalised about the whole population of children at his age” (32M). Parents also described disliking seeing different professionals on each occasion as they felt they had to “start right from scratch” (17M) and go right through their child’s diabetes history with each new person encountered. Some parents also pointed to occasions when their lack of familiarity with staff had resulted in them not asking for help and support. This included 25M who had felt unable to share her upset with staff after discovering her son was “one outside his target range for a [Hb]A1c” for the first time in several years:
“the care has been fantastic, so em I mean I couldn’t fault it except that when you go up to clinic it can be anyone and so it was a doctor I had never met before and a nurse I had never met before and they didn’t know him or us … and when it’s like there didn’t seem any point in saying ‘och I’m really disappointed’ you know.” (25M)
Parents also highlighted how lack of staff continuity could lead to the receipt of different and sometimes contradictory information which could cause them to feel confused and uncertain about which advice to prioritise and follow:
“they all have slightly different takes on what’s happening and what you should be doing … in the sense that you might see one guy who’s particularly interested in injection sites, but the next time we saw somebody else who was interested in blood glucose readings, so you’ll get different advice, whereas had we, had we seen the injection guy again, we’d have gone into injections… And, we were once suggested, cause pasta's slow burning, that we should inject her after her meal, if she’s having pasta… But then the next consultant said, ‘mm, no, I wouldn’t do it like that.’” (26F)
Some parents also shared their worries that clinics were over-stretched and described how this mitigated opportunities to ask questions because of their concerns about the knock on effects on other parents:
“that’s at the back of your mind, when you’re talking to doctors, you think, maybe, I hope I’m not holding up other people. So that’s, that’s the worst of it, really, 'cause you want to ask them and talk about things but then you don’t want to be making them [late], 'cause I think 'cause I’ve waited for quite a while before, so I kind of feel guilty about making other people late.” (16M)