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Seeker

In document Health Literacy: (Page 173-184)

Chapter 4 Research Methodology and Method

5.2 Baby Boomers’ health literacy categories of description

5.2.1 Seeker

The health literacy behaviours, efforts, and intentions within this category share a common focus on health information and health information-seeking. The baby boomer healthcare consumer as a ‘seeker’ is characterised using the concepts of: a research predisposition, information gathering, constructive questioning to uncover health-related knowledge, and information verification. For example, this may be in the context of prevention or a chronic condition,

…I'm always enquiring about and always looking and reading about general health issues anyway, in terms of general maintaining of good health. Especially as I get older. EML#43

I use Google a lot now. I’m not on it all the time but I’ve got rheumatoid arthritis and I know that there’s big changes in the treatment of that going on, so I want to be aware if anything changes.

There are changes all the time. EMT#4

The key meanings interpreted for this category are: searching, organising, and evaluating (summarised in Table 5.2). These meanings are weaved through the participants’ conceptualisation of health literacy discussed below. There were no discernible gender or ethnicity differences in the seeking role.

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Table 5.2 Summary of Seeker category of description

Key meanings Description Illustrative Quotes

Searching Research disposition

…in terms of getting advice and information and so on, in my mind, there’s nothing that can stop me from getting that. So I search for information. PPMT#14

I’m a researcher by nature…so I bloody go looking and find stuff. MiFT#17

Organising

Sorting information Developing and choosing sources

Being very persistent…Kind of getting a feel of what [information] connections to follow up, where the best sort of information is likely to lie, because there’s so much dross on the internet as well as the good stuff of course. And so I guess it’s getting a sense of how to weed it out and how to assess it. EFL#8

…All sorts [of information sources]. I just take all sorts of information because I’m thinking okay these people here have a lot of wealth of information…because I find very often, I don’t know why

[in relation to health information]. MiMT#45 Seeker

Evaluating

Constructive questioning Seeks justification & evidence

I’ve got medical people in the family and I’d talk to them, “Do you know about this?” or, “What’s your opinion of this?” Or I would ask my GP if I really wanted to discuss it or the physio. EFL#11 I asked all sorts of questions. I always asked why, why do we have to do it? I even asked for my daughters, like what time do they need to do it? So that’s always how curious we are when we have to do something we always make use of the opportunity to ask as much as we can. PPFT#21 Yeah it’s finding information about how this thing works. I mean if there was quite a few people that said “oh yes, this did this and this for me”. If I found quite a few that said the same thing, maybe there might be something in it. But unless that happened I just say “oh well, good on them”.

MiML#4

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Today’s information-intensive context of health includes multiple information sources with variable reliability and understandability. These contextual factors underscore the importance these patient-consumers place on behaviours and intentions to “identify likely information sources and use them to retrieve relevant information, assess the quality of the information and its applicability to a specific situation, and analyze, understand, and use the information to make good health decisions” (Shipman, Kurtz-Rossi, & Funk, 2009, p. 295). Sources of health information and verification include healthcare providers and other people, as expressed by this participant,

All the health professionals say you can’t rely on what’s on the internet to be accurate. In those sorts of instances I always check with those that have had the training and talk to them. I mean, I might do some reading and say, “What do you think of this? Is that right or wrong?”. AFT#12

The patient-as-seeker positions their behaviours in this category according to his/her health event, lifestyle, health belief, or treatment preferences; for example,

…we had a family doctor who was overly into natural remedies- You’d have colds and sore throats he’d prescribe onion juice or lemon and honey, sometimes we wanted stronger. So it’s a balance…we do talk to them [healthcare professionals] about things that we’re doing and they tell us that yeah this works; that doesn’t work; this is dangerous;

that is not; you shouldn’t be doing this, but matched to how we want to look after our health. AMT#2

and for some participants their seeker behaviours reflect particular health risks they may be predisposed towards; for example, a Pacific Peoples participant stated,

I do my own checks on the computer on things like what is my number on Heart Foundation thing. I do that, or even go and do what’s your mental state. PPFT#15

Participants repeatedly expressed a strong sense of individual responsibility in their conceptualisation of health literacy as seeking, researching, and becoming knowledgeable. For example,

if I have a problem then I will go to the internet or go to the library, so I could find the information from there. Because the doctor, you can see them but you cannot talk too much with them, you want to find out

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what happens and don’t have time to discuss like a friend, impossible.

I realise that. AML#41

I don’t suppose you’re prescribed a tablet and told, “This is an opiate and it can be very addictive.” That’s why I think when we’re prescribed something we should actually find out what the effects are.

EFL#11

I think everybody should do some research before you go to see your GP, then you might have a big picture, more idea. And then when the GP tell you something you can understand. You can even give him some mention; I mean remind him about this part or that part And the GP might say, “Oh I didn’t think about that part either”. AFT#23

I thought, okay this is what I need to do, and so I started finding out where they pushed and where the pressure points were. Once I understood what had to be done, very often when it came back I was able to fix it. Basically within about two hours I was right. So I’ve learnt from that that you should never ever take anything for granted.

Whatever comes your way regards to information soak it in and just keep taking it in and just keep learning from it. MiMT#45

For many participants health information-seeking also implied greater agency in their healthcare contexts. This was described by one participant as ‘having nouse’, in relation to identifying information sources, verifying information, and then leveraging these resources for their benefit in a healthcare encounter. This participant describes a typical seeking process,

I mean, there’s an awful lot of information online. Probably, it’s trying to find something that was relatively objective and I guess I’ve got enough nouse that I can work out what is objective and what is basically promotional material. It’s sort of looking for facts I may not have, it may not give me all the answers but there’s perhaps, looking at options and then once I’ve established that then going to my doctor INT: So you did some of that searching before you went to the doctor?

Yeah.

INT: And so you went with the information and then you talked about it?

No, well, I don’t tend to go along and say, “Well, I’ve looked this up and this is…” But basically that’s just stored in the back of my head.

Basically I go in there to have a discussion with the doctor and probably it’s a bit like a lot of other things, you know, whether it be purchasing any other item, you’ve got that information that you need that’s gonna help you. Perhaps, determine whether the information you’re gonna get from this case, your doctor, is going to be helpful or trustworthy. EML#13

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Interpreting the participants’ perspective of health literacy as a seeker revealed their integration of health information with action - their health literacy behaviours were purposeful and focussed. For example,

So I was very conscious about making sure that I live longer than my father and the way to do that was lifestyle, diet and finding out what’s going on inside my body. And go to the doctor and they do all these blood tests, they aren’t gonna give them to you unless you ask. So, I was, “Give me all the blood tests you have”. MiMT#30

Behaviours and experiences in this category of description (common with others) reflect participants’ lay views of health (their belief systems and motivations regarding health, Hughner & Kleine, 2008); in this case, health is a moral responsibility that can be met (at least in part) through being informed, in turn enabling the individual to proactively achieve good health outcomes,

I just kind of see it as I’ve got that choice - either get on and do it myself and try and nut it out or just keep being sick. I guess that’s what motivates me to find out for myself what I can do. EFL#8

I found every information then I try to study. I think everybody need [to do] this because this is our health, our self. AML#41

In addition, a consumerist orientation to health is echoed in the participants’

perspectives, pointing to a sense of entitlement to information,

You need information, yeah. You know, it doesn’t matter what it is; a doctor shouldn’t hide information from you. Your healthcare person should give you all the information that he’s got about it, whether it’s good or bad. You should be given [participant emphasis] all that information. And of course then you can start asking questions like I asked Dr XX. EML#5

…if I have to fight to get someone to tell me what I need to know to understand then that just winds me up. MiFT#17

Participants considered that investing time and effort in these seeking activities was evidence that they wanted to be engaged in their health discussions, equal to their healthcare professional; information adding authenticity to their ability (health literacy) and their health issue. Therefore, participants’ health information-seeking influenced the nature of their healthcare relationship since there were

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implicit expectations of respect, trust, and reciprocity from the healthcare professional;

I suppose I just research so I know what I'm talking about when I go in, so no one can fool me. Or I’ll ask questions about, “What the hell does that mean? Don’t be using big words because I'm not a doctor!

Say it in a way that I understand.” MiFT#27

Sometimes before I see them I have already do some research about my problem and I print a lot and then when I talk to them I show them.

Sometimes I argue with them so I'm not a very popular patient because they say, “Oh are you a doctor?” AFT#23

The challenges and contradictions of the patient-as-seeker role are illustrated in three instances where ‘seeker’ behaviours have patient-imposed boundaries, emphasising that health literacy is a negotiated practice. Frequently, participants had an innate sense of how much information they wanted or when they wanted the PHCP to be the expert, demonstrating the paradox of expertise,

I don’t want to do a medical degree while I’m sitting in the interview. MiFT#17

I'll start talking to those professionals that I hope will give me some balance, but of course there is some vested interest in the medical health profession to promote where they're heading as well. So that’s another issue. I’d like them to actually look outside the pharmaceutical aspect of it…if enough health professionals made those enquiries, perhaps they could debunk [what I’m doing]…but until they can prove otherwise, I’m going to keep doing my own research. EML#43

But any other thing I expect to go the doctor, check me out, either give me medication to tell me this is your problem, you need surgery or whatever and then end of story. AFT#26

Nevertheless, participants expect the PHCP to respect their knowing and to be equally knowledgeable or if not, to be motivated to research and verify information. Many participants are practised seekers of information and need their level of knowing to be taken seriously; for example,

…I find masses of research on arginine and citralline and I think most doctors probably don’t even know what they are for. EFL#8

I’m constantly looking to see how it’s changing. So there’s a whole lot of new research at the moment looking at nitrous oxide…looking at

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amino acids and peptides - looking to see how they impact upon disease and well-being and health. So I’m taking two amino acids. I take them twice a day. MiFT#19

Often the participant’s seeking was dismissed and discredited, as below, He [GP] looked at the list of supplements that I’d spent about a thousand hours working out the programme for Ian [the participant’s partner], which was all based on extensive research, and he looked very briefly at that and said, “Oh no, I think that’s far too much to put all those together. It’s better to just have lots of baby spinach and lots of green vegetables and lots of bone broths and good diet. That’s what I would do.” EFL#8

An informed patient-as-seeker expects the health professional to be at least as well-informed and research-capable as they are. Although, as one participant expressed below, this was sometimes not fulfilled,

I’ve changed my GP. The one we’re with now is very different from the previous one but I’ll give you an example from the previous one because I think it’s quite relevant. I went along with all the background scientific information on this [testing for Vitamin D], on one sheet, so it wasn’t too stressful for him, and I presented this to him and it turned out that in New Zealand of course they only did the useless one [of the tests]. But aside from that he looked at my sheet… I said, “You might be interested to read this,” and he looked at it and he said, “Oh, I’m not into biochemistry.” EFL#8

and many participants shared the following participant’s opinion that they had to develop and continue their own searching and evaluating behaviours because,

…don’t start me on that; because the pharmaceutical aspect, I mean how often have they misguided us, because they're a money-driven organisation. For some of those more common things, if you look back;

it’s not so prevalent now, but you will find that over time certain doctors would be prescribing certain things for certain conditions, based on the fact that they were all looked after for doing so…people go, “Oh yeah; nah, a health professional - they’ll just prescribe medicine.” EML#43

Essentially, the patient-as-seeker expected the PHCP to be a co-seeker, He [the healthcare professional] said, “You continue what you're doing. I think that’s great.” I said “But have you ever looked into this?”

and he said, “No.” And I said, “See, that’s the problem, I have. Maybe if you looked into it there could be a balance here.” It’s like my blood

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pressure pills; they up my blood pressure pills and I said, “What I find interesting is; can anyone tell me why I have this issue?”

[PHCP response]: “Well Dave, you're getting older and that’s what happens.”

I said, “But there must be something causing this.”

[PHCP response]:“No, we don’t really know.” EML#43

The seeker role enhances lay expertise through being a distributed practice across multiple information sources, including PHCPs,

So I will generally either go and contact a friend who’s a doctor and say, “hey do you know?” Or I will contact the doctor’s services down at the [clinic]. They are pretty up-to-date. MiFT#19

Being competent at verifying health information is part of this role, aptly described by an Asian participant as “when you touch many then you will know what is correct, what is not” (AML#41). Critical and evaluative checking was commonly accepted as an integral part of researching and health information-seeking; until verified, information was only data, rather than a ‘resource’ for their health literacy. For example,

Yeah, I always check, I always do check with somebody that’s a professional and it would probably be my family first rather than the healthcare provider, depending on what it is. AFT#12

I don’t trust a lot of things on Google. What I do is I just don’t read one article, I read a few and then I see what the views are. But I wouldn’t trust it explicitly as in 100%, it’s just more information.

Sometimes from the information I might just speak to family members who are in the medical field… they would be able to say, hey this is junk. AFT#26

Importantly, this information seeking was inseparable from individual judgment on validity, relevance, and ultimately, risk. One participant talked about the research he had done on statins,

Generally I like to look for both sides of the story because you will find lots of people going, “Yes,” and then I look at all the ones that go,

“No.” Then you're trying to evaluate where they're coming from…

Then you have to start weighing up where the risk factor is for you and what you're willing to accept and what risks you're willing to take.

EML#43

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Most participants desired a PHCP to be co-seeker, verifier or assurer of information. However, this often led to frustration with limited collaboration or a perceived sense of bias which diminished the efficacy of the patient’s own efficacy as seeker,

I did ask the food health people, you know that sell the health products.

And I did ask the doctor but they said there’s no harm done to you, but doctors will never recommend you take things like that you know.

They’d rather give you the hormone tablet and all that, which I don’t want. AFT#16

Ultimately, though if I start getting confused then I'll start talking to those professionals that I hope will give me some balance, but then if you want to go down that path, of course there is some vested interest in the medical health profession to promote where they're heading as well. So that’s another issue. EML#43

These participants did not subscribe to the view that e-health and technology-based information promoted a compliant and passive patient role. Online information was viewed as one of multiple sources of health information, and if they did not consider themselves competent to understand or validate that information, then their seeking health literacy role extended to others in their social and family networks. The seeker, while not distinguished by their connectedness, nevertheless used informal and infrequent contacts with network members to research healthcare recognising the value of both lay expertise and healthcare professionals.

If it’s something that I am strongly suspicious that a doctor isn’t going to be able to throw much light on, I would first of all start doing a bit of research myself to get an idea of what’s going on, on the internet and books, and talking to people who I think are knowledgeable. And then if it’s something that I want a diagnosis on to know that I’m right about what I’m dealing with… then I will head to a doctor to check it out. EFL#8

…a lot of it’s just reading about it, you see it on TV and you read about it. My wife will do some research on it herself and she did some reading on the kiwifruit phloem tablets and so with her vote, I know it’s pretty good. MiMT#30

I go with it in my head and then just see what he comes up with and question it, and suggest things that I’ve learnt to see if it’s relevant or not, and just sort of try and gather as much information as I can.

EML#5

In document Health Literacy: (Page 173-184)