Most participants reported accessing support for a range of literacy learning needs including reading, writing and numeracy. All clearly faced significant challenges with literacy activities, although their particular skills and challenges varied. For example, some people struggled to read simple material while others could read at a higher level but had been prompted to seek support with writing because new practices at work or a need to change jobs meant writing skills were needed. Some people said they were attending the learning centre to improve their existing skills, including their ‘English’ (although all were native speakers). Several revealed, either explicitly or indirectly during their interviews, that their understanding of what words and text they could read was poor.
Difficulties with written communication
Not surprisingly, participants gave various examples of difficulties they had had with written communication in healthcare contexts. The heavy reliance of the health service on written text, and the widespread use of medical terminology and jargon, had variously led people to miss or be late for appointments, to arrive unprepared for planned interventions, to struggle with leaflets or forms handed out ‘on the spot,’ to fail to follow instructions or requests, and (compounded by any of these) to feel anxious and stressed before and during any conversations with clinicians.
“I’ve been to the hospital a few times and they’ve been like ‘Oh you were meant to bring a urine sample’ and I was ‘Oh I didn’t know’......... cos I just read the date, the time and the ward” (Karen, female, 20s)
“I could read the word ‘endoscopy’ .... I actually thought an endoscopy was down here [indicating throat] but I was told by the doctor that they’re checking your stomach, see so I didn’t think they were going the other way, so it was quite ‘bloody hell,’ you know and you don’t realise what you’re gonna feel like after so it was quite an ordeal.” (Jack, male, 40s)
Our findings in relation to written communication are in line with previous research [30–35].
Difficulties with spoken communication
Our two main original findings are (1) that, over and above the well-documented difficulties that people with low literacy can have with the written information and complex explanations and instructions they encounter as they use health services, people with low literacy can have significant difficulties in their spoken consultations with health professionals and (2) that one key to understanding their difficulties in spoken conversations lies in recognising an often strong reluctance to ‘disclose’ difficulties with reading, writing or understanding in social and healthcare contexts that is rooted in the terrible stigma that can be associated with low literacy.
Participants’ accounts revealed a range of difficulties that they experienced with spoken communication in health care contexts. These difficulties impacted negatively on participants’ experiences of formal healthcare and abilities to manage their health conditions at home. Some of the difficulties were apparently perpetuated or exacerbated because participants limited their conversational engagements with health professionals and often took care to avoid revealing when they did not understand what was being discussed.
Participants frequently reported difficulties in understanding what was said during consultations and they attributed these difficulties in part to the language clinical staff (especially doctors) used. Participants’ descriptions of spoken conversations included terms such as, “gobbledygook;” “big fancy words;” and “twenty four letter words.”
Some participants thought some doctors made no effort to help them understand what was being said. For example:
“.... and he [hospital consultant] was ‘blah blah blah’ and he knew fine I didn’t have the foggiest idea what he was talking about.” (Harry, male, 40s)
Some participants clearly recognised that their own anxieties could also contribute to their difficulties with understanding what was said in consultations, both because they impaired listening and concentration, and because they deterred them from asking questions. For example, Louise described how she felt every time a healthcare professional produced a piece of paper:
“… I’m like that, ‘Oh no, they’re wanting me to write something,’ start panicking and that seems to take over you and sometimes you’re like that, ‘What was they saying there?’ because the anxiety’s took over what’s going on.” (Louise, female, 40s)
It was particularly striking that, in spite of their self-recognised difficulties in grasping potentially important information, a number of participants described feigning understanding to the health professionals they were talking with:
“…they never explain anything properly. It’s always their own big words and I just say, ‘Yeah, okay’ and I go home and I’m like, ‘I don’t know what that meant.’” (Megan, female, teens)
The recurring reason given by participants who said they were reluctant to ask questions or to make it known that they had not understood what was said was that they were concerned to avoid revealing to health professionals that they had literacy difficulties.
Engagement limited by fear of disclosure of low literacy
The concern to keep their literacy problems hidden from health professionals was explicitly shared by most participants in their interviews, and all mentioned some occasions on which they had concealed their low literacy in healthcare settings, for example, by: saying they didn’t have their reading glasses; relying on a trusted person who accompanied them to consultations; saying they would read something later; or making an excuse to leave.
Some participants seemed almost wracked with fear that health professionals might discover their low literacy, and regularly limited their conversations with health services as a result. For example, Barbara described what happened when she was asked to complete a form at a first appointment and said she had done this kind of thing many times:
“..... I couldn’t spell it. I just went, ‘You know what, I’m going to have to go. I’m not feeling very good. I’ll come back, I will come back’ and I grabbed it [the form] and ran out.” (Barbara, female, 50s)
Barbara also described what she felt like and did within consultations, especially if she saw paperwork:
“…. you’re nervous and you’re pulling back ...... then you’re just going to finish it as quick as you can, short answers, just get out. ‘I don’t know’, or ‘Yeah’, ‘No’, where you wouldn’t say, ‘Well, actually.....’ and be more explicit, you wouldn’t do that. Well, I wouldn’t. I’d want out.” (Barbara, female, 50s)
Not all participants were so strongly concerned to conceal their low literacy, and a minority of our sample told us that they would reveal their low literacy to a healthcare professional if they were asked directly and if they felt comfortable with the person who was asking. However, few were able to recount explicitly having revealed their difficulties to any healthcare staff.
When asked what they thought would happen if their literacy became apparent to healthcare staff, participants talked primarily in terms of possibly being looked down on, or being suspected of having been somehow irresponsible in respect of their own or their child’s health. For example:
“They [healthcare staff] could treat you differently, and not in a nice way. They could look upon you as if you’re stupid, you don’t understand what I’m telling you.” (Karen, female, 20s)
“… when something bad does happen or there’s an accident or something when you first go to the doctor or the hospital …you’re sitting there thinking like ‘Do I tell them do I not?’ but you’re scared to in case then they twist and they think ‘Well this could have happened because you’ve done wrong.’” (Katy, female, 20s)
Despite these fears of what might happen, none of our participants could recall any actual experience of having been treated badly in practice as a result of healthcare professionals finding out about their literacy difficulties (most had been careful to avoid healthcare professionals finding out). Some had, however, experienced poor interactions when they had sought ways around the use of written text. For example, a young mother described the response when she asked a midwife for help with bathing her newborn baby:
“… you’re saying …‘Could you show me … cos I’m not too sure’ …. and she went ‘Oh (sigh) I just gave you a leaflet.’” (Katy, female, 20s)
Some participants were aware that the behaviours that they used to conceal their low literacy (as well as any literacy-related mistakes they might make) could be misinterpreted:
“….if an appointment came…..instead of filing it or writing it down in the diary I’d just put it away and just forget … people were getting a bit like ‘What’s she playing at?’” (Dorothy, female, 50s)
Low literacy and social-psychological wellbeing
Participants’ reluctance to reveal their low literacy to health professionals was consistent with their broader reluctance to reveal these difficulties to anyone (other than select family and friends). Overall, participants identified a range of strategies that they used to cover up their literacy difficulties. We heard, for example, of people pretending to read newspapers during work breaks, leaving training sessions at times when there was a possibility of being asked to read or write, avoiding participation in a range of social activities, and even colluding with peers’ expressions of negative attitudes about people with literacy difficulties:
“I never told anybody, it was always just something that was hidden away back so nobody could see it. I don’t know why. I think that’s just no confidence, not wanting to tell anybody in case they think I’m an alien.” (Megan, female, teens)
“I think I’m doing what most people do that can’t read you step back from the crowd. Especially in a group or something because the worst thing that could ever happen is ‘oh (name) could you just read that line for me?’ Boof, your whole world just sinks, you know what I mean. There’s nothing worse and that’s why people always step back near the door just in case that happens.” (Bert, male, 40s)
“… and they were saying … ‘Oh, there was people at [a named group] and they can’t even read and write’ and I’m just sitting there going ‘oooh!’ Things like that. I wouldn’t like my own friends to know” (Louise, female, 40s)
As one focus group participant summed up, they felt they were always “having to be one step ahead in case you’re handed a form or something.” (Jason, Focus Group 1)
Some participants thought that both low literacy and its associated stigma had impacted on their health in ways not mediated by their difficulties with healthcare use or the management of health conditions at home. In particular, literacy-related stigma was seen as a negative influence on mental wellbeing. For example, Harry talked extensively about how the stigma of low literacy, the self-imposed exclusion from social activities and the perpetual concern to avoid disclosure “wears you down.” He quite clearly thought that his literacy problems had contributed to him feeling socially isolated and “weak and depressed.”
Several other participants volunteered that they had been diagnosed with stress and other mental health problems including nervous breakdown, depression, eating disorder and panic attacks. There was nothing in their accounts to suggest that the diagnosing doctors had uncovered or explored low literacy as a possible contributing factor.
Reluctance to disclose low literacy rooted in early experiences of stigma
Our early analyses of participants’ narratives suggested that early experiences of being labelled, stigmatised and discriminated against had been strongly influential in people’s behaviours in healthcare contexts and other social situations. This tentative theory was confirmed in subsequent interviews and during the two focus group discussions.
It became evident from participants’ biographical narratives that the literacy-related fears that impaired their social engagement could usually be traced back to childhood experiences. Often without any specific prompting, participants offered information about their schooldays in their interviews. They recounted struggles both with literacy and with being labelled and discriminated against because of these. They reported being humiliated by teachers and picked on and bullied by other children. For example:
“… my teacher thought making me read out to the school was one of the best things there was. It wasn’t. It was not. It was so… ..the children, they were the worst cos it was like another notch on… Oh (sighs).. ‘Well, she’s thick, stupid, now she can’t talk.’” (Margaret, female, 50s)
These kinds of experiences and subsequent avoidance and cover-up behaviours recurred throughout participants’ life stories. The challenges they faced and the sometimes dysfunctional ways they reported behaving in healthcare contexts, such as limiting conversations with healthcare staff or covering up their lack of understanding to avoid anticipated stigmatisation was explicitly recognised by some as being directly linked to their childhood experiences:
“I’m no asking questions cos at school when you ask … kids that ask questions and don’t know what they’re askin’ they get humiliated and humiliated and it goes on and on and on and then it suddenly becomes part of your make up…” (Harry, male, 40s)
Participants’ suggestions for improvement in the health service
Some participants clearly believed that healthcare staff “think that everyone can read” and suggested a need to educate them about dyslexia and literacy problems. We also heard a variety of other suggestions for service improvement.
Not surprisingly, participants advocated the simplification of written information, including signage, appointment letters and instructions for medicine-taking, as well as healthcare leaflets. They also suggested that their understanding of clinical information and advice could be much improved if healthcare professionals explained things in lay terms rather than using medical terminology and jargon.
For the minority of participants who indicated that they would reveal their low literacy to healthcare professionals they felt they could trust, attempts by health services and health professionals to make it easy for people to ask for help with literacy activities without being judged seemed potentially useful–although they still did not like the idea that they might need to tell every health professional they met. Most participants, however, strongly preferred to avoid disclosing literacy difficulties and some suggested that their resolve to conceal their low literacy would be further strengthened if they were asked to identify themselves as needing help. These people favoured what are sometimes called ‘universal’ solutions, for example, simplifying written information, jargon-free simple explanations and advice or providing recordings of key consultations–for everyone, rather than as an option for those who are seen to require it . Participants also suggested that if services sent forms out before appointments, they could avoid putting people on the spot; that departments and relevant signposts within healthcare facilities could be colour coded; and that technology could now be used to provide interactive audio and visual information and instructions.