Based on familiarisation with the data and prior engagement with the literature on health literacy eight overarching themes were identified (see Table ).
These themes, sub themes and categories were used as a framework to analyse the data and define new concepts, create typologies, find associations, provide explanations and develop strategies for potentially defining and measuring health literacy.
The development and practice of health literacy
Participants talked about their understanding of their condition, how they managed it and how they engaged with health information and health services. We used our thematic framework to help interpret their health literacy skills based on their accounts. We also identified areas where participants put their health literacy into practice. Participants sometimes progressed from developing their health knowledge to becoming active communicators and decision makers in their health care. Below are some of the abilities they demonstrated:
• Knowledgeable about their condition, health services and their rights as a patient;
• Skilled and organised in self-managing it;
• Actively involved in information seeking and use;
• Communicative with health professionals in an assertive manner;
• Able to seek and negotiate treatment options.
We suggest that health literacy was generative and as participants built on these abilities they became more health literate in managing their condition, in accessing and engaging with information and services, in discussions with health professionals and in negotiating and accessing treatments. However, there was variation in these abilities across our group participants, some had good knowledge and self management skills but were less involved in information seeking and less communicative in consultations.
Participants had developed some knowledge about their condition and continued to develop more knowledge over the time of the study. Most participants had a basic knowledge about health. However, two participants (5EP, 4CR) had worked in health settings and had a good knowledge of patients' rights and responsibilities and understood the role of health professionals. Some (4EP, 5EP, 5CR) had knowledge of science and biological processes associated with their condition and could understand their symptoms and how medications worked in their body.
Below is an example of the knowledge that one participant demonstrated about her recently diagnosed condition:
"I fell ill in July 17th last year with flu like symptoms and it developed into what they call um part of the encephalitis group but it's called ADEM (Acute Disseminated Encephalomyelitis). Initially it was called IDEM, it's called acute dissemination, it's to do with acute deterioration of your myelin sheath basically and with all this being attached to your nervous system is all being attacked." (Participant 5EP, interview one)
Below participant 5EP demonstrates her knowledge of her rights as a patient and how the health service must provide access to her information.
"I know that because of the Freedom of Information Act you are entitled to see your notes and they charge you quite a lot of money if you want photocopies of them £50 um I know you are entitled to that and you are entitled to change your... and you are entitled to have a second opinion and without having prejudice about making that decision um and you are entitled to see your... well you should be entitled to see your patient care plan as well which is very important I think, so you know what's happening, um and that I kind of know from working in the hospital really."
Self- management skills
Participants were better able to understand how to manage their condition if they had good knowledge about their condition and good understanding of how medications worked in their body. Patients with diabetes particularly talked about managing their diet and medications to try to control their blood sugar. Participant 2XP had had diabetes for a long time but was gaining further information in the X-Pert Diabetes Programme. She had gained a better understanding of how her medication worked and how to manage her diet. Below she talks about her diabetes self management skills (managing medication):
"I have an injection in the morning and it contains fast acting for your breakfast and then the slow acting will work on your lunch and then fast acting in the evening meal and then the slow acting for the rest. Then through the night again and I felt sometimes my biggest meal was lunchtime rather than dinner time. The time when I didn't have the injection and the slow was working. The slow was working lunchtime and I wanted the fast working so I felt that would bring my blood sugars down much lower and the only way you can do that is have an injection with every meal. That way I thought right I control what I'm eating, what I'm injecting and my activity what I'm doing, and work it all out accordingly, and that's basically what I'm doing". (Participant 2XP, interview two)
Some participants used self monitoring devices to monitor their blood and manage their condition. For example, participant 4CR had a good knowledge of how to manage her blood coagulation and was able to change from having her INR monitored in a clinic to self-monitoring at home. Both participant 1XP and 2XP also monitored their blood sugar several times daily.
Information seeking and use
In the first set of interviews participants talked about how they sought and critically engaged with various forms of health information, thus, using 'functional' and 'interactive' health literacy skills [4
] to develop health knowledge and improve health literacy skills needed to manage their condition.
Participants engaged with written materials:
"I've got a really good medical dictionary and I also find some of the sites, they underline something they kind of explain. I think it's... I'm not sure if it's patient... Or is it net doctor maybe that's quite good. I've come across quite a few of them that were explained or I just get my dictionary out and have a look". (Participant 5EP, interview 1)
Some accessed online health information:
"I got more from going on to the MS society website because they seem to have a lot of information and it's quite good information and even though I went onto the Encephalitis website there still wasn't very much because MDEM was more common in children after inoculations, for some reason it can be a bacterial or viral disease so I just found I actually got more information by going onto the internet and going on to the MS site than I did from the hospital and going to the consultant." (Participant 4EP, interview 2)
Some critically evaluated information sources:
"If it's the companies themselves I'm slightly more sceptical than if it's sort of research done by universities about... you know a study of it and some of the findings and things, I feel a bit more reassured by that. Whether that's right or wrong I don't know but it seems a bit more objective so hopefully it's a bit more reliable but I do take the pharmaceutical trials and studies with a bit more um scepticism." (Participant 4C, interview 1)
Some used social media (web chat and video sharing):
"Having the GUCH online and being able to say... honestly being able to just put a question out there and say "when I breathe in why does it sound like my chest is popping"? I watched a few surgeries on You Tube as well in kind of... not in a morbid sense but I needed to see what happened." (Participant 4CR, interview 1)
Some engaged with research and assessed relevance to them:
"Yes, there's a really exciting one (drug trial) at the moment. I don't know if I'm meant to know, but I do know that my cardiologist is running it, so next time I see him I'm going to tackle him about it. It's a very exciting new drug that replaces Warfarin. So at the moment I'm doing 6.5 mg, the next day I've got to take 7 depending on what I eat. At the moment it tends to be quite steady but my INR still fluctuates, my level, whereas on this drug I would take one pill a day and it does the same as long as my INR is fine." (Participant 4CR, interview 1)
Communication with health professionals
Participants talked about how they communicated with health professionals and discussed topics based on their understanding and more recently acquired knowledge of their condition. Some participants were motivated and able to seek and engage with new information, reflect on the information and then incorporate it into their consultations with health professionals. In some cases participants have had to communicate with multiple health professionals, sometimes having to assimilate information from various different specialist and sometimes conveying information between health professionals.
Some participants brought information to be discussed in a consultation:
"I actually got the information off the internet and took it into him that kind of thing. He then went onto the website and got more information for himself". (Participant 5CR, interview 1)
Some participants expressed concerns about medications:
"I approached the diabetes nurse and said I don't like the way things are going I feel like I'm injecting water because it doesn't seem to be doing anything." (Participant 2XP, interview 1)
Some participants prepared questions (leading to negotiation of treatment):
"I always prepare questions before I go. I have a notebook I use for medical consultations and I prepare information for him about my mental health and about my physical health and to discuss with him the medication that I'm on and whether it can be reduced." (Participant 4EP, interview 2)
Some participants conveyed information between health professionals:
"There is not always that communication straight away between my consultant and the GP they take a month for the letter to get to the GP and to say what needs to be done whereas if I see him and I tell him what's coming he kind of knows, and if he's disagreeing then he's got a chance in the meantime to actually post a phone call and say... which has happened in the past when there's been a disagreement over monitoring my certain drugs, um and I've gone back and told him and straight away... He's dealt with it where if he had waited for a letter it would have delayed things even more so there has been a lot of bouncing of information." (Participant 5EP, interview 2)
Some participants managed information from multiple health professionals:
"I'm managing 5 different consultants between Cardiff and London. I'm the only one that gets information from all of them I mean they all talk to each other but they don't retain the information because they have got so many patients so I find it easy to manage myself and just ask a GP when I need something but my rheumatology team are really good and they are the ones I go to for advice." (Participant 4CR, interview 3)
Active involvement in consultations
Participants who were informed, motivated and confident through developing their knowledge and health literacy skills became more actively involved in their care and were motivated to communicate their needs and concerns to health professionals. Thus they were able to make informed decisions about their treatment preferences.
One participant was able to draw on her knowledge of her diabetes treatment to negotiate a new treatment regime with her diabetes nurse:
"I said "I'm not happy with the way things are going and I want to try something else" and I said "I want to try four injections a day I said instead of having two mixed in the morning have a mixed insulin and two at night I want three fast acting and slow for the night and try a completely different."" (Participant 2XP, interview 2)
Some were able to seek out (sometimes with the help of others) alternative treatments or new treatment and negotiate them with their health professionals:
"I did some research and I found a liquid aspartame that I can buy from Boots and she went OK. She had a look at it and discovered it only gives you a normal dose of iron and I need like loads so she said well there is another liquid form, it's like a juice, and I'm still taking that about three months later and that's had no side effects". (Participant 4CR, interview 2)
"I did think about going on a recent drug um called Byetta, it's quite new and I said could you have a look on the internet to see what they say about it and um I could perhaps ask my doctor then whether it would be suitable for me which is what we did yesterday". (Participant 2XP, interview 2)
"Yes there's this new therapy called DBT which means dialectical behaviour therapy, it's quite new and it's supposed to have good results and I have spoken to my doctor about it and she feels that it's a good way to go and she's trying to arrange that for me." (Participant 2 C, interview 2)
Where the opportunity arose, some participants were able to take part in shared decision making:
"We discussed the use of statins because my cholesterol was a little bit high um and um we talked about it jointly really and he said he wasn't... he said he could put me put me on statins but he asked me what I felt about it basically and at that stage I said no um but only after discussing it not just a straight no". (Participant 5CR, interview 2)
"When I first went on to beta-blockers for high blood pressure I kind of discussed it with the doctor and you know we decided... I took his advice basically but I was aware that there was a variety of different medications". (Participant 5CR, interview 2)
Influences on the development of knowledge and health literacy skills
There were three broad factors that influenced whether participants had the motivation and opportunity to become knowledgeable and health literate, and whether they could become actively involved in consultations. These were personal motivations, emotional factors and access to facilitators.
Some were motivated to seek and engage with information to help explain the way they were feeling and to understand symptoms and effects of medication. For example, some participants sought information from internet sources to understand why they might be experiencing symptoms such as problems with vision (4CR), dizziness (5EP) and skin rashes (5CR).
A range of emotional factors motivated participants' engagement with information and their potential to develop their knowledge and health literacy skills. Participant 5EP developed her health literacy by seeking information about her condition and potential difficulties that may arise in the future; partly limiting her emotional reaction to the effects should they occur.
I'm doing a lot of research at the moment into um what my condition is and what to look out for... I think it's very important to at least know or have an idea of what could possibly happen otherwise if you don't you are just sitting in a... your oblivious world and then when it does happen it can hit you twice as hard. (Participant 5EP, interview 1)
After surgery to replace a heart valve, participant 4CR became anxious about some of the potential effects of surgery. She engaged with media to view television documentaries and You Tube clips of the same surgical procedures that had been performed on her. The understanding she had gained through her information seeking helped her make sense of some of the effects of by-pass surgery that she was experiencing, and reduce her anxieties about potential effects. However, it took some time for her to feel comfortable to engage with such information. The data extract below was from interview two (6 months after surgery).
I had to see everything that had happened so I can understand. All of these silly little things go through your mind and then until you actually see how they stitch the valves in place, and they just caught, and it goes into place, and how they tug it around to make sure it's secure, and how they test it afterwards. Only then I was like ok I'll chill out now I know that it's safe and it's secure and I'm not going to leak blood everywhere. (Participant 4CR, interview 2)
Friends and family
Friends and family acted as health literacy mediators, sharing their knowledge and health literacy skills to access information, interpret and analyse that information, communicate with health professionals on behalf of, and in collaboration with participants. They supported participants in their health literacy actions by seeking and using information to consider treatment options and influenced their decision making.
Some received support from family or friends when communicating with health professionals, helping participants to build their knowledge and understanding and become more active in consultations. The nature, complexity, amount or timing of the information was sometimes difficult to engage with, when participants felt stressed or anxious about their diagnosis. Participant 5EP took a friend with a health service background, to draw on her knowledge and critical skills, to more actively participate in her consultations.
"I always have someone with me, even from working in the health profession I was always taught if you are going to see a doctor, have someone with you because you don't always process what's been said. I've got a friend who has an NHS background who sits there with me because there are certain things she's questioning as well..." (Participant 5EP, interview 1)
Health professionals as facilitators
Some health professionals were supportive to the development of health literacy, although others created barriers that prevented or discouraged participants from developing and practising their health literacy skills. Supportive health professionals facilitated the development of health literacy by encouraging participants to engage with information before making a treatment choice. For example, participant 2XP was informed of the use of patches for pain relief by her GP, and asked if she would consider them as a convenient treatment option. He then suggested she look at the information about patches that was available on the internet, which she did before deciding.
He said well go home and have a think about it, have a look on the internet. He said you will be able to find all the information you want have a read about it. He said, and you come back in a month and then you know if you want to try it. (Participant 2XP, interview 2)
Participant 5EP perceived her GP to be very interested in learning more about her condition and assisted her in seeking information. Participant 4 C had a similar experience with her GP in managing her asthma and allergy condition. Their GPs helped facilitate the development of health literacy through encouraging an exchange of information, support in seeking information and guidance on what to do with that information in terms of self-management decisions.
Pharmacists also provided participants with information about their medications and supported them in managing their medication regimes. Consultations and discussions with pharmacists facilitated the development of health knowledge and health literacy skills and provided participants with information they could then discuss further with their GP.
I had the pharmacist at the hospital phone me to double check I was having blood tests regularly and ask if everything had been explained to me and they double checked. (Participant 5EP, interview 1)
Nurses acted as health literacy facilitators by assisting information seeking, supporting transitions to new medication regimes and facilitating access to further information and services. Overall, nurses helped facilitate development of health literacy by helping participants increase their medication knowledge, teaching self-management skills, facilitating access to other services and communication between participants and doctors, and introducing treatment options.
She visits me every week to make sure I'm ok, to make sure I'm taking my meds. You know keep me up to date, and then sort of be the go-between between me and my um consultant as well. (Participant 2 C, interview 1)
Barriers to the development of health literacy and using health literacy skills
Several barriers inhibited the development and use of health literacy skills and limited opportunities for participants to become actively involved in healthcare consultations. These barriers are broadly categorised as personal barriers, emotional barriers and professional barriers.
Personal barriers such as a lack of personal motivation, not accepting a diagnosis and a tendency to be compliant to medical advice prevented participants from carrying out health actions such as accessing health care services, and limited active involvement in healthcare consultations. Personal barriers tended to be based on attitudes towards health and help seeking behaviour.
Participant 4XP had a problem accepting her diabetes; this affected her development of health literacy in a number of ways: she did not want to disclose her diabetes to other people, even to friends and work colleagues who were diabetic themselves. This prevented her extending her knowledge of diabetes and self-management skills through learning from others.
Some participants relied on health professionals as their only source of health information, engaging with little or no other health information. Although some were happy to comply with medical instructions, it limited their understanding of their medication and limited progression towards active involvement in healthcare consultations.
"I'm afraid I'm one of these people, I'm told to take tablets and I take them and that's it but I notice with other people they were asking questions and they really must read those leaflets that are inside the tablets inside the box that are very detailed... I don't. I'm given the tablet and I take them". (Participant 1CR, interview 1)
Unpleasant emotional reactions (e.g. shock, fear and anxiety) prevented some participants from engaging with or processing information. For example, participant 1CR was temporarily shocked about needing by-pass surgery and her anxiety prevented her from processing the initial information that her consultant gave her about her condition. Participant 4XP had unpleasant memories of family members' experiences of diabetes and found it difficult to accept her diagnosis of diabetes. Her embarrassment along with her fears and anxieties associated with diabetes deterred her from accessing support from her GP.
"I don't really want to go to the doctors. I've got to go I know, but I'm afraid of what they are going to say like you know. That it's gone worse or have this or... I'm sort of putting it off all the time like you know." (Participant 4XP, interview 3)
Emotional reactions to information were changeable over time and some participants were ready to engage with more information as they became better able to cope with it. Participant 4CR exemplified this: at first the seriousness of her condition and anxiety about the possible prognosis made her stop seeking and engaging with information, but over time she had overcome her anxiety, and was able to seek and engage with information to develop an understanding of her condition, manage it, effectively communicate with a number of health professionals and make self-management and treatment decisions in collaboration with health professionals involved in her care.
Health professional barriers
Health professionals' poor communication skills undermined the opportunity for participants to make use of their health literacy skills in consultations and created a barrier to exchanging information. Some referred to 'not being given enough information' and 'not being listened to'. Others felt that information that they brought with them or their ideas about treatment were dismissed by their health professional. Information was sometimes withheld based on incorrect assumptions concerning participants' information needs and their ability to understand health information. For example, participant 3XP wanted to see her blood test results but her GP would not let her have them.
"I've had terrible trouble getting out of him what my results are from the consultant at the hospital and um you know my blood results. His attitude was well you don't know what they mean. And I say yes, but I do know what they mean and if I don't I will find out." (Participant 3XP, interview 2)
There were also instances of conflicting information from different health professionals which can be confusing for patients who must try to evaluate which advice to accept. For example, participant 4CR had received different instructions about managing her Warfarin dosage from her primary and secondary care team. Although her trust in the medical profession led her initially to comply with the advice, she also then fully developed her own understanding of how her INR should be managed.
Synthesis: the health literacy pathway model
Our longitudinal qualitative analysis of how participants' developed and used their health literacy skills to become more active and empowered patients enabled us to map a set of stages that participants progressed through as they increased their knowledge and understanding of their condition, learned how to manage it, actively participate in discussions with health professionals, and make informed self-management and treatment decisions. Progression through these stages is presented in a theoretical model mapping a health literacy pathway from health knowledge towards decision-making (see Figure ). The model includes five stages along a pathway; each stage requires a more complex set of health literacy abilities. As participants progress through each stage, they develop their health literacy further and gain the opportunity to feel more empowered. Health literacy processes are represented in the five stages of the Pathway Model and health literacy outcomes are represented as running parallel to those stages.
The Health Literacy Pathway Model.
Stage one: building health knowledge
This stage represents a person's basic knowledge about health in general and knowledge about their own health concerns. This knowledge is formed through reading about health, interactions with health professionals and/or health educators, discussions with friends and family and interactions with media health information. Some participants had a basic general knowledge of health issues but little knowledge of a newly diagnosed condition; others had been living with a condition for some time and had built up a substantial amount of knowledge.
Stage two: developing health literacy skills and practices
The health literacy skills stage represents competencies in listening, speaking, arithmetic, problem solving, and decision making that are used in information seeking and use of information, (e.g. using computer to seek information, skills in information seeking, critical analysis of information), and self-management skills such as understanding medication (e.g. anticoagulant dosages) and blood sugar measurements. Health literacy practices are the tasks that participants carried out with these skills (e.g. searching for health information, balancing diet with medication, self-monitoring blood sugar). Health literacy skills at this stage can increase the development of health knowledge, thus there is a feedback relationship between these stages. One example of this feedback relationship is the ability to successfully access and use information in order to further one's knowledge of a condition.
Stage three: displaying health literacy actions
Health literacy actions represent active involvement in one's health and relates to communication with health professionals where someone is asking for a treatment or service, expressing concerns and desires for information and services, requesting and negotiating medications and contributing to consultations in terms of information exchange.
Stage four: the production of informed options
Potential treatment options were sometimes presented in healthcare consultations by health professionals. However, some participants were able to produce their own list of potential treatment options after engaging with health information sources and informal discussions with friends and family. Skills used at stage three of the pathway model are helpful to producing options (stage 4) and making a more independent informed decision (stage 5).
Stage five: making an informed decision
At this stage options have been produced, deliberated and firm decisions are made about treatments or self-management tasks. Participants who reached this stage have moved along the Pathway Model from stage one to stage five. However, their transition may not have been linear; with some movement between the stages in both directions.
Transition along the health literacy pathway towards decision making
Participants became more knowledgeable about their condition through self-learning or through the patient education programmes in which they were participating, and used their knowledge and skills to become active in consultations and make decisions about their health. For example, after learning about the existence of self-monitoring devices for INR (stage 1) participant 4 CR carried out research (stage 2) and thought about ways to obtain a device (stage 3), considered her options (stage 4) to acquire funding for a device to help her manage her warfarin medication, she then entered discussions with health care providers and charities to negotiate funding for the device and the strips to use with it (stage 3). After some negotiation with her primary care service she made a decision (stage 5) to buy the device herself and obtained funding for the strips from her GP surgery (stage 3). Thus, her decision is a result of acquired knowledge, skills in accessing and acting on information, consideration of available funding options and negotiations with health professional and charity organisations.
I went in to ask for funding for my self-tester and they didn't have the funding, they referred me to a charity that could help and I got in touch with the charity and the charity were going to fund me but they didn't have money either. So they were trying to be helpful but at the end of the day I bought my own tester but the doctor has said that she can prescribe the test strips on prescription so that's taken away the burden of £150 every six months or so. (Participant 4CR)
Participant 4CR continued to self-monitor her INR level and self-manage her warfarin medication throughout the time of the study.