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Decider

In document Health Literacy: (Page 184-195)

Chapter 4 Research Methodology and Method

5.2 Baby Boomers’ health literacy categories of description

5.2.2 Decider

In the decider category the distinctive efforts, activities, and skills are those whereby individuals exercise their choices and are the deciders in their own health decisions (refer Table 5.3). Therefore, this construction of health literacy is categorised as being high on the self-horizon. The decider role is characteristic of the baby boomer participants’ emphasis on individualism, individual discretion over health literacy behaviours, active decision-making, and taking responsibility in their health. Their construction of health literacy includes proactive behaviours and personal judgment combined with an acceptance of individual responsibility for health. Proactive choosing and preventive ‘deciding’ and their translation into acting are fundamental in this category of description for the phenomenon of health literacy.

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Table 5.3Summary of Decider category of description

Key meanings Description Illustrative Quotes

Choosing

Exercises choice Uses discretion Understands opportunities

And so, if I have some really bad effects like real dizziness, I'll just stop taking them and think this isn't working; I don’t want to go through this. MiFL#36

So I went to our GP and said, “Look, I want this [done] because I thought it’s my body and this is what I want”. EFL#10

So no we didn’t go back to him, no we haven’t been back to him. MiFT#19

You get the choice in the end don’t you? I mean I feel you get the choice. As long as you’re well-informed, you get to choose. MiFT#19

Acting Proactive &

preventive

So based on that kind of information and background, as a family, we’ve decided that we’ll apply a conscious approach to our decision making about what we eat, encouraging ourselves to be engaged in exercise. PPMT#14

There was a time where I was not very happy with stuff. So I went for an ECG and got a heart check-up just to make sure that everything was okay because I had a scare. AMT#2

No I don’t get a reminder [for a 12 monthly check-up]; if I’ve got a spare day I just either ring up or book a week ahead EML#29.

Decider

Taking responsibility

Demonstrates self-determination

I’m the person responsible for my health and using them [healthcare professionals] as advice really.

PPFT#24

I mean, it’s my body and so it’s up to me to know what treatment’s happening and what I do accept. EFL#11 I had four times the maximum recommended by the World Health Organisation So yeah, things weren’t looking good. I really had to do that myself; come to that conclusion myself and follow up [myself] from that. EFL#8

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Participants’ understand health literacy as a predominantly individual capability, lending support to Ruger’s (2010) health capability framework that positions the individual as the unit of analysis. While relationships and contexts are apparent, the individual’s health capabilities and exercise of choice differentiate this category from others. The patient-as-decider emphasises that health literacy is about the individual realising healthcare choices through their capabilities.

Therefore, the three key actions in the decider category of description - choosing, acting, and taking responsibility - all assert the individual identity and presence in health literacy,

I have annual medical check-ups as a preventive because I see our healthcare system as the ambulance at the bottom of the cliff and I'm trying to be at the top of the cliff before I get to the bottom. So I'm very conscious of my health. I go to my GP, obviously to get tests done.

EML#43

Yeah I go with my own information. I went to my doctors and I asked them; you know I checked on the website; checked out where the clinics are and I found out what I needed to do; went to the doctor and said, “I want [xx] operation.” And they were ooghing and aghing, I said, “No, no, no, no, this is what I want you to do.” This is what I want you to do because I'm going for it.” So they did. …And I just said to the [GP], “If you don’t give it to me I'm going somewhere else.

Wherever I'm going I'm gonna get it done.” So I got it done. MiFT#27 The patient-as-decider role embodied the perspective that the patient did not want merely to be the recipient of the PHCPs’ decisions, rejecting the professional as expert and the patient as passive and compliant; instead theirs is a central health literacy role, “Yeah, I’m calling the shots and it’s not somebody else” (EFL#10).

The healthcare meeting is a professional service encounter where the individual can choose to discuss options, care and treatment,

I remember going to a GP and he said, “Oh this medicine is not working, I think it should be stronger.” And I said, “No, I don’t believe that’s the case. I didn’t realise that his Ventolin was out of date.” I said, “Just give me an up-to-date one; I’ll see if it works first.

So I said, “I want you to prescribe me some Ventolin and…” I said,

“And [emphasis] I want you to prescribe me that and if the Ventolin doesn’t work then I’ll use that.” I actually suggested that, they didn’t suggest. AFT#12

I’ve been fortunate; maybe all the ones I’ve dealt with have basically given me real options and choice and basically it’s been up to me. I’ve

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never felt as though I’ve had the wool pulled over my eyes over a treatment whether it be through my doctor or through any other health provider. EML#13

In consumerist terms, this patient-as-decider category could be characterised by

‘choice’ (compared with the Manager category emphasising ‘voice’, Section 5.2.5). Choice, at times, may be the patient following the healthcare professional’s advice albeit explicitly acknowledging their presence in the decision,

I'll either stop taking them or continue depending on the effect; if it’s a really bad effect I'll stop taking them and I'll ring my osteopath and talk to her about it. Like when I had the middle ear one she says to me,

“Well I think you need to continue taking them because of the nature of the infection that you've got.” Take probiotics, increase your fluid intake” and all those things. Yeah, so I just do that. MiFL#36

The participants clearly articulate their desire and experience in being active in their healthcare, characteristically expressed by one participant as follows,

You know he just plonked me with a box full of aspirins to thin my blood. A box full of pills to lower my cholesterol! And I looked at this box and I just said no I’m not going to do it. And everyone says you’re mad, you shouldn’t do that, you should do what the doctor says. And I said “Nah, I want to just try and do it through diet”. EML#5

and exercising discretion over health literacy behaviours, even if the resulting choices contradict established practice or their PHCP’s advice,

I should have [had the blood test] cause it was cholesterol but that’s one example of me sticking my head in the sand. I thought, well, when there’s an obvious problem I’ll go back and deal with it. I don’t want to know if I’ve got blood pressure ‘cause I feel great. EFL#11

I know about my mental health and I manage that first and foremost so things that I’ve got…that I don’t really wanna know about because I suspect they’re not a lot, but they might be something really big, as soon as I go to the doctor and give them [i.e. the participants’ mental health ‘things’] some value it’s gonna take over my life and I’m gonna be really obsessive, so I don’t do that. MiFT#17

So [I’ve] been on the waiting list, but timing’s not right [for me], so I’ve just left it and it’s still like that today. MiMT#42

…Because when you taking pills to lower your high blood pressure you have to keep going; you have to keep going to take that tablet.

Otherwise if you stop the blood pressure will be high again. So I

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control myself with foods; with exercise; with medication and then it go down. Not take tablet. AML#33

The self-horizon (refer Section 5.3) is the predominant focus for the decider category. However, in circumstances where the self-horizon recedes, for example where the decider’s actions, skills, and efforts focus on family and network members, this practice of discretion is moderated according to duties and responsibilities of those other roles. For example, one participant expresses how she exercises her discretion for “fear of finding something out”, accepting that within her strong focus on patient-as-decider there are seemingly contradictory behaviours according to whether they apply to self or others in her networks,

There’s a little bit of head in the sand, only in regard to me, not my children or my mother. MiFT#17

The patient-as-decider rationalises their discretion when they are the object of the discretion, “I ignored my leg ‘cause I’d hit my hip and fell sideways. It was only the next day that I realised I’d actually hurt it and I ignored it” (MiFT#19), but typically when others are the object of their discretion and decision-making, the decider asserts individual responsibility and decisiveness; for example, the same participant who exercised her discretion above also asserted,

…I’m now re-educated about that. I tell S when she has to have her blood tests, I tell S she should be checking this, we check the levels. I tell the doctors, have you checked the levels? That sort of thing. That’s because I think the GPs, in my view, they have a ten minute session, so they’re there to treat us as quickly as possible and then get us out of there. That’s fine, I mean they have to make a living but in terms of health it’s a bit more than that eh? MiFT#19

Selecting or rejecting a healthcare professional was a fundamental aspect of this health literacy category of description,

…I decided to change my GP because I figure that a GP who’s not into biochemistry is not somebody I want to spend a lot of time with.

EFL#8

That person [healthcare professional] will always be tested as well, just like lawyers. The interview first, before you appoint them to do anything, same deal. So there’s got to be an affinity. MiFT#17

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Although, the patient-as-decider can exercise their choice to return to a healthcare professional, in many cases, voicing dissatisfaction was not considered useful or productive. Therefore, typically “exit won the argument” across all ethnicities, being a frequent behaviour described by non-European participants (Simmons, Powell, & Greener, 2009, p. 5, citing Hirschmann, 1970, who differentiated between exit, loyalty, and voice). Most participants did not confront or challenge their PHCP face-to-face but instead decided to “just walk away, change to another doctor, and never come back to see the first doctor” (Chiu, 2011, p. 1659).

Generally, these participants said how they “…go somewhere else…they go sideways” (MiFT#19) to get to a PHCP where they are accepted and where they can satisfactorily engage in their decider role, “That’s when I Googled it and found that guy. So no we didn’t go back to him, no we haven’t been back to him”

(MiFT#19).

Nevertheless, the ability to exit a healthcare service and the interchangeability of healthcare professionals is interwoven with other health literacy roles requiring

‘resources and nouse’ (similar to the phrase used earlier for patient-as-seeker) as expressed by one participant,

…and for me being middle class, middle aged pakeha, well-educated and I’ve got the resources to make some choices. Not got the biggest resources in the world, but if I'm not happy here I can go there, I don’t have to stay at XXX ‘cause they’re cheap…. And I’ve got the nouse, you know, I can move. EFT#1

Not only does the patient-as-decider require resources (see Bourdieu, 1986, on social, cultural, and economic capital), but the ability to exercise healthcare choice is often constrained, or even absent, in remote areas. Institutional processes and systems may also constrain the patient-as-decider, for example,

…GPs are like a farmer drafting the sheep really. And I don’t think that’s good enough anymore. I think people really would like action. I think that the doctor’s become the middle man and we don’t need them.

Yeah there’s too much waiting around and having a guess.

Speculating about it [what might be wrong]… EFL#3

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…they didn’t take the time to listen and he [GP] just brushed it off,

“Oh we’ll deal with that later, we’ll have a look at that later on” the menopause thing. PPFT#24

One participant (EFL#3) tells a compelling story of the challenges and frustrations inherent in her construction of health literacy as patient-as-decider, her vulnerability, and the healthcare system,

Yeah it’s me, it’s my day, every day that’s annoyed and upset by these headaches or whatever the issue is.

You sit there and you say [to the GP], “Oh I’ve had a few headaches and I don’t ever normally get headaches.” And he’ll go, “Oh well I think you’ve probably got a nose infection I’ll give you some antibiotics for a month.” And I'm thinking… “Okay I'm prepared to go for a month but then I want some action.”…I'm thinking, “Why don’t you just give me a scan and then we can put it aside.”

I think it’s all about instead of giving us information that says, “You are well yippee”, they go, “Oh it could be this, it could be that.” I think there’s too many delays in giving people information to let them know you are well. There’s like, “Well we’ll try this and if that doesn’t work we might try this.” And then next thing you know you’re either dying or the problem’s worse.

I think it…becomes fear or scariness about where it might lead. And you want to be quickly informed that that is not it. And so to me putting someone on pills for a month to see if it’ll go away is not okay anymore. Yeah because we do have equipment out there…

Despite variable health contexts, opportunities, and resources, the participants clearly experienced their health literacy in terms of ‘options’ and choosing, along with their sense of entitlement and abilities to explore and act on their options,

So I understood what they were saying but I also believed that we’ve got control over what we want to do and what we don’t want to do and ultimately it’s our decision. If he [GP] wouldn’t do it, well, you had to go somewhere else and find what you want. EFL#10

…if there’s anything serious that requires doing I’ll take a flight and go to India and get it done there. If it’s a knee operation or a hip operation or a heart transplant or something I’ll get it done there. I’ve got that option why do I have to sit over here and wait. They’re the same doctors; the same Indian doctors here or the same Indian doctors there. And the facilities there are equally good so there’s no big deal. So we’ve always got that option there. AMT#2

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If I find the GP here is not suitable for me, is not reliable, then I maybe change GP but until now is work good I think. AML#41

…so I got the next guy in the practice. Then when I gleaned that he wasn’t really on the same wavelength at all and that view was solidified by the vitamin D experience, then I made the decision to go.

EFL#8

And the cholesterol, he keeps going on about that and I said, “Well look, I don’t really want to start taking cholesterol tablets. What else can I do?” I said to her [a locum], “No, I’m not taking pills.” And she said, “Oh, why not?” And I said, “Well, I don’t really wanna start another lot of pills. I would rather not take pills. I’d rather do it myself.” So that’s what we’re doing. EFT#6

The participants may sometimes demonstrate less knowledge than PHCPs and at others considered themselves to have more knowledge. These baby boomers expected to be the active decision-maker; and depending on individual priorities, values, health context, or information [a]symmetry, they simultaneously expect the health literacy role of the PHCP to shift from “knower to facilitator” (Aujoulat, d’Hoore, & Deccache, 2007, p. 18). As illustrated in the following excerpts,

But the hospital said, “You should really be taking aspirin forever more.” I’d already done my homework on that and there are lots more effective ways of thinning your blood than aspirin and they don’t mess up your stomach for the rest of your life too. So we’ve got that one covered so that was all right. He just knows that we will [use alternatives] anyway. They can’t force you…that’s what he said, “If I prescribe this stuff for you, you won’t take it so there’s no point me prescribing it.” EFL#8

I’ll go there with some pointed questions and say, “What am I missing here? This is how I understand it, what am I missing?”

INT: So how do they react when you do that?

Well it depends what it is. Quite often there’s a little bit of that smirking thing like “here we go, another bloody home-learned doctor”.

But generally they’ll fill the gaps.

INT: They’ll fill the gaps and not be opposed to your proposition?

No, because I’ve left the room if they’re not going to be open to that before we ever get to deciding what I’m gonna do about it. And I have, many times, saying “I don’t think we should pursue this conversation it’s finished about now”. MiFT#17

INT: Let’s just talk about the cholesterol thing. You did your own research and at that time did you go back to your doctor with that research to have a discussion with him or her?

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It was, I guess, a process of trying to get my mind around accepting I was gonna have to get on medication so I had a number of years to work through that. So when I had done the reading and decided that,

“Yeah, we do need to get it down.” That’s a decision I made and we actually agreed and started me on medication. MiMT#30

This active choice is not without interpretive processes, information, or support from resources (health networks and healthcare professionals), but the self-horizon is more in focus as these ‘others’ recede,

The thing that I liked - he [PHCP] was basically there to provide me support around a decision that I was wanting to make and that was it.

EML#13

…went through lots of websites; talked to lots of nurses and it’s really a personal opinion. So in the end I was given that information and I had to make my own decision, which I did. MiFT#27

…So I just took the initiative myself. PPFT#24

These patient-as-decider roles were intentional, focussed efforts to resolve certain health demands,

If I feel unwell I will try to do something by myself. Take some

medicine. I have a drawer, old drawer full of different type of medicine and ointment. I took it here from my country because I know that kind of medicine is good for me. AFT#23

…very often I’ll say to him [GP], “What do I need to do in order [to be healthy] because”, I said, “I want a full evaluation, whatever that means.” …He’ll say, “Well, that’s your blood pressure, diabetes, we’re looking at your cholesterol” and he’ll give me the list…and also with regards to prostate testing I said everything. I said, “Whatever it is men at my age need to have done just do it. That’s it. End of story.

Regardless of whether you think I’m healthy or not, just as part of preventive so that I know.” MiMT#45

Understandably, the participants’ understanding of health literacy around being the patient-as-decider implicated the relationship, role behaviours, and perspectives of the PHCPs. Sometimes these aspects were barriers to the decider role of health literacy; one participant illustrates this when she sought diagnosis and treatment for a stomach complaint, she had a blood test and then,

…I said, “What’s happening?” and he [GP] got on the phone and said,

“No, doesn’t show anything. Nothing. If you had an infection or you

In document Health Literacy: (Page 184-195)