Social Science & Medicine 69 (2009) 18051812

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Social Science & Medicine

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Exploring patient involvement in healthcare decision making across different

education and functional health literacy groupsq
Sian K. Smith a, *, Ann Dixon a, Lyndal Trevena a, Don Nutbeam b, Kirsten J. McCaffery a
a
b

Screening and Test Evaluation Program, School of Public Health, Edward Ford Building (A27), University of Sydney, NSW, Australia
Ofce of the Vice Chancellor, University of Southampton, Southampton UK

a r t i c l e i n f o

a b s t r a c t

Article history:
Available online 19 October 2009

Education and health literacy potentially limit a persons ability to be involved in decisions about their
health. Few studies, however, have explored understandings and experiences of involvement in decision
making among patients varying in education and health literacy. This paper reports on a qualitative
interview study of 73 men and women living in Sydney, Australia, with varying education and functional
health literacy levels. Participants were recruited from a community sample with lower educational
attainment, plus an educated sample of University of Sydney alumni. The transcripts were analysed using
the Framework approach, a matrix-based method of thematic analysis. We found that participants with
different education conceptualised their involvement in decision making in diverse ways. Participants
with higher education appeared to conceive their involvement as sharing the responsibility with the
doctor throughout the decision-making process. This entailed verifying the credibility of the information
and exploring options beyond those presented in the consultation. They also viewed themselves as
helping others in their health decisions and acting as information resources. In contrast, participants
with lower education appeared to conceive their involvement in terms of consenting to an option recommended by the doctor, and having responsibility for the ultimate decision, to agree or disagree with
the recommendation. They also described how relatives and friends sought information on their behalf
and played a key role in their decisions. Both education groups described how aspects of the patient
practitioner relationship (e.g. continuity, negotiation, trust) and the practitioners interpersonal
communication skills inuenced their involvement. Health information served a variety of needs for all
groups (e.g. supporting psychosocial, practical and decision support needs). These ndings have practical
implications for how to involve patients with different education and literacy levels in decision making,
and highlight the important role of the patientpractitioner relationship in the process of decision
making.
2009 Elsevier Ltd. All rights reserved.

Keywords:
Patient involvement
Decision making
Socio-economic position
Health literacy
Health information
Patientpractitioner relationship
Patientpracitioner communication
Australia

Introduction
Involving patients in healthcare decision making has become
a priority for health practitioners and policy makers, and is now
endorsed by leading health organisations (Institute of Medicine,
2001; UK Department of Health, 2009; World Health Organization,
2000). The shift toward greater patient involvement in healthcare
q We are very grateful to the participants who gave their time to take part in the
interviews and share their health care experiences. The authors would like to thank
the Hunter Valley Research Foundation for recruiting participants, and Dr Rowena
Forsyth for her assistance with interviewing participants. This study was funded by
the University of Sydney Cancer Research Fund and supported, in part, by
a program grant no. 211205 awarded to the Screening and Test Evaluation Program
from the Australian National Health and Medical Research Council (NHMRC).
* Corresponding author. Tel.: 61 29351 7186; fax: 61 29351 5049.
E-mail address: sians@health.usyd.edu.au (S.K. Smith).
0277-9536/$ see front matter 2009 Elsevier Ltd. All rights reserved.
doi:10.1016/j.socscimed.2009.09.056

has been driven by a number of socio-political changes. During the

1960s, the womens and civil rights movement actively challenged
medical paternalism, as contributing to the disempowerment of
patients (Charles, Gafni, & Whelan, 1997). In a similar vein, movements in bioethics and medical law have advocated greater respect
for patient autonomy since the 1970s (Beauchamp & Childress,
2001). More recently, increased participation reects the enormous
advance in information technology, with greater public access of
health information made possible via the internet (Eaton, 2002).
Greater involvement has also been shown to lead to better decisionmaking outcomes for patients (OConnor et al., 2003).
The shift towards increased involvement has inevitably led to
changes in the roles, expectations and relationships that doctors
and patients have during the consultation. In traditional paternalistic approaches, the doctor took a dominant role and made
decisions on behalf of the patient, a passive recipient in the

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S.K. Smith et al. / Social Science & Medicine 69 (2009) 18051812

process (Emanuel & Emanuel, 1992). Newer approaches reect the

notion that patients may adopt a more active role. One of the most
commonly cited models of involvement is the shared decisionmaking approach (Charles, Gafni, & Whelan, 1999), whereby
patients and doctors work in partnership, exchanging information,
both detailing their preferences and then deciding on options
together.
Although the shared model is referred to as an approach which
patients and doctors strive for, its tendency to focus narrowly on
patients choosing between treatment options, fails to acknowledge
the more nuanced aspects of involvement (Entwistle & Watt,
2006, p. 269). Furthermore, previous research looking at involvement has tended to rely on quantitative self-report methods, to
identify the role the patient wishes to play (Degner, Sloan, & Venkatesh, 1997). However, asking people to choose from a list of role
description statements may not fully capture broader aspects of
involvement such as, how a patient feels about their role in the
process. This has led some researchers to adopt qualitative
approaches, to explore how patients experience involvement
(Davey, Lim, Butow, Barratt, & Redman, 2004; Entwistle, Prior, Skea,
& Francis, 2008).
Greater involvement in decision making, however, places
increased demands on a patients literacy skills, in order to understand complex health information and articulate their preferences.
There is growing concern that some patients, particularly those with
lower education and literacy may have difculties participating in
the process. Low literacy is prevalent in most developed nations,
with up to half of the population possessing below basic (inadequate), or basic (marginal) literacy skills and experiencing difculties reading basic written information encountered in day-to-day
life. Furthermore, lower literacy is most common among populations already disadvantaged, due to their relative social position,
lack of educational qualications and limited employment opportunities (Australian Bureau of Statistics, 2006; Department for
Education and Skills, 2003; Kutner, Greenberg, & Baer, 2006).
Interest in the relationship between literacy and health has
resulted in the development of the construct of health literacy
(Nutbeam, 2008). Health literacy is dened as the degree to which
individuals have the capacity to obtain, process, and understand
basic health information and services needed to make appropriate
health decisions (Institute of Medicine, 2004). However, some
experts argue that health literacy means more than the ability to
read information; it extends to the ability to interact with a health
professional and exert greater control over everyday situations
(Nutbeam, 2000). It can also relate to having an awareness of public
health issues, scientic processes and cultural differences (Zarcadoolas, Pleasant, & Greer, 2005).
The way that health literacy is dened has important implications for how it is measured. Current health literacy assessments
only measure skills in the functional sense (i.e. reading ability and
numeracy), and do not capture the multifaceted nature of this
construct (Baker, 2006; Nutbeam, 2008). For example, if health
literacy is conceptualised more broadly as social skills, that enable
patients to negotiate with health professionals, then existing
instruments are not appropriate.
Health literacy research is a rapidly expanding eld of inquiry,
with many studies (predominately from the US) documenting the
association between functional health literacy and health outcomes.
Patients with lower functional health literacy have been shown to
engage less in preventive health activities (Miller, Brownlee, McCoy,
& Pignone, 2007), and have poorer knowledge about their condition(s) and how to manage them (Gazmararian, Williams, Peel, &
Baker, 2003). They also appear less condent in expressing their
concerns, and participating in the decision-making process (DeWalt, Boone, & Pignone, 2007; McKinstry, 2000).

To date, however, there has been little qualitative work

exploring the impact of education and functional health literacy
skills on patients understandings of involvement in decision
making. Lupton (1997) found that adults from lower socioeconomic groups appeared to more readily accept the doctors
advice due to greater levels of respect, whereas those from higher
socio-economic groups appeared more comfortable questioning
the doctor. In addition, patients with lower literacy report difculties asking questions and feel that doctors do not listen, or
communicate to them clearly (Baker et al., 1996). Relatedly,
consultations that contain more technical language and fast paced
monologue may be particularly problematic and dissatisfying for
lower literacy groups. However, this work was not conducted with
real patients so its implications are limited (Roter, Erby, Larson, &
Ellington, 2007).
A number of social and linguistic theories have been put forward
to explain doctorpatient interaction. Some social scientists and
health researchers (Rapley et al., 2006; Strong, 1979) have drawn on
interactionist social theory (Goffman, 1967), proposing that normative, ceremonial rules are often so entrenched within the medical
encounter that they are unquestioned, and subsequently serve to
reinforce the status quo and power relations between the doctor and
patient. In contrast, Pierre Bourdieu (Bourdieu, 1999), a social theorist, posits that in order to understand the actions of individuals and
social groups, it is important to consider how broader structures of
society including cultures, education and social position, shape social
and communication practices. Consistent with Bourdieus theory,
doctors have been shown to act differently when conversing with
patients from lower socio-economic groups, exhibiting less positive
socio-emotional behaviour such as listening, reassurance, and
empathy, and underestimating the amount of information they
desire (Willems, De Maesschalck, Deveugele, Derese, & De Maeseneer, 2005).
Bourdieu states that a persons perceived social position may
shape how they view their interactions with others within social
structures and institutions of authority (e.g. the healthcare system).
There is an important distinction, however, between a persons
social position and their literacy. Socio-economic position (as
generally measured by education, occupation and income) denotes
a persons position within the socio-economic structure. Evidence
shows that social disadvantage is associated with poorer health, and
structural factors such as housing and unemployment, as well as
psychosocial variables (e.g. perceived control over life, stress and
depression) mediate this relationship (Wilkinson, 1999). Literacy on
the other hand, reects a persons actual skill, rather than their
perceived social position, across a range of abilities including
reading, numeracy, oral communication, as well as social skills
which enable them to interact with others, and participate in society
(Appleby & Hamilton, 2006).
This paper reports on a qualitative study to explore experiences
of involvement among patients varying in education (as a marker of
socio-economic position) and functional health literacy; and to
explore whether shifts towards greater involvement, choice and
shared decision making had differentially impacted on patients
understandings of healthcare decision making.
Methodology
This qualitative study drew on phenomenology as a theoretical
orientation and research methodology (Smith, 2007). Phenomenology is concerned with understanding human experience in
terms of individual consciousness (Reeves, Albert, Kuper, &
Hodges, 2008, p. 632). This means that the empirical focus is on the
individual experience, appropriate for our interest in patients
perceptions of involvement in health decision making.

S.K. Smith et al. / Social Science & Medicine 69 (2009) 18051812

Participants
We recruited participants with higher and lower education as part
of a larger project evaluating a bowel cancer screening decision aid
for lower literacy groups. Participants were eligible for bowel cancer
screening and aged between 55 and 64 years. The study was
approved by the University of Sydney Human Research Ethics
Committee and conducted in Sydney, Australia, from October 2006 to
February 2007. We used different recruitment methods for each
education sample.
Lower education sample recruitment
The sample was recruited via the Australian Electoral Commission from 10 electoral divisions with lower Socio-Economic Indexes
for Areas scores, indicating relative socio-economic disadvantage. A
total of 540 electors were randomly selected and contacted by
telephone to determine eligibility. People with lower educational
attainment (no formal educational qualications, intermediate or
high school certicate, or a trade certicate) were invited to
participate. We excluded adults who did not speak English as
a main language at home as well as those who reported that they
had considerable difculties reading written health information, as
a marker of below basic (inadequate) literacy (Chew, Bradley & Boyko,
2004). This was because our focus was on adults with basic (marginal)
literacy for whom written materials would be appropriate.
Higher education sample recruitment
A total of 250 members of the University of Sydney Alumni
Network were randomly selected and invited by letter to opt into
the study. Those who consented were contacted by telephone to
determine eligibility and arrange an interview.
Interviews
After obtaining informed consent, all participants were interviewed individually at home or at the university. Interviews were
in-depth and semi-structured. The interviews lasted around 1 h,
and were centred around a topic guide, developed by SS and KM.
The topic guide covered, participants recent or past experiences of
involvement, views on the advantages and disadvantages of being
involved, health information seeking habits, and strategies for
understanding information. The topic guide directed the interview
process, but was used exibly to ensure that participants experiences shaped the specic content and direction. All interviews
were audio recorded and transcribed verbatim.
After the qualitative interview, we measured participants
health literacy. Since there are currently no instruments that
measure health literacy skills beyond the functional level, we chose
to use the following two functional health literacy measures.
1. The Test of Functional Health Literacy in Adults (TOFHLA),
adapted for Australian populations, to assess literacy and
numeracy skills in various healthcare scenarios (Barber et al.,
2009; Parker, Baker, Williams, & Nurss, 1995).
2. The Newest Vital Sign (NVS), a 6-item measure which involves
interpreting written and numeric information on a nutrition
label (Weiss et al., 2005).
Given the potential stigma and anxiety associated with literacy
testing, care was taken to carry out the assessment in a sensitively
(Parikh, Parker, Nurse, Baker, & Williams,1996). Participants answers
were marked after the interview and results were not given. If

1807

Table 1
Education and functional health literacy groups.
Group

Education

Literacy level
(performance on the
Newest Vital Sign)

(1) Higher
education and
higher health
literacy
(2) Lower education
and higher
health literacy
(3) Lower education
and lower health
literacy

University degree

4 or greater

No formal educational
qualications, intermediate, high
school or trade certicate
No formal educational
qualications, intermediate, high
school or trade certicate

4 or greater

Less than 4

participants wanted feedback, the interviewer went through the

specic questions after the interview.
Data analysis
Analysis was informed by Framework, a matrix-based method
of thematic analysis (Ritchie, Spencer, & OConnor, 2003). Analysis
begins deductively using a priori questions drawn from the primary
research aims, but identies themes inductively by maintaining
close links with the raw data (Pope, Ziebland, & Mays, 2000). In
relation to the prevalence of themes and patterns occurring within
and across the data set, we drew on guidance offered by Braun and
Clarke (2006). Specically, they advise that it is up to the
researcher(s) to decide what counts as a theme, and that this should
be done in a exible manner without applying rigid rules (p. 84).
The stages of Framework analysis are described below.
(i) Familiarisation with the data: three researchers (SS, KM and
AD) read a sample of transcripts to familiarise themselves with
the data and facilitate discussion about the themes.
(ii) Creating a thematic framework: the rst author (SS) then
developed a provisional thematic coding framework to chart
the data, based on the research question and recurrent issues
identied from participants accounts.
(iii) Indexing: SS and AD independently coded a selection of transcripts and met regularly to rene the framework.
(iv) Charting: SS and AD synthesised the remaining data within the
thematic chart using the nal coding index.
(v) Mapping and interpretation: SS, AD and KM then met to interpret
the charted data, and identify negative cases (Meyrick, 2006).
Findings
Functional health literacy and sample characteristics
Participants were divided into three groups based upon their
education and performance on the NVS (Table 1). All participants
had adequate health literacy as assessed by the TOFHLA. However,
the lower education group had signicantly lower scores and took
longer to complete the literacy component than the higher
education group. All participants in the higher education group
demonstrated higher health literacy, according to the NVS criteria,
but those in the lower education group varied. We, therefore, sub
divided the lower education group into two sub groups based on
their NVS scores. Demographic characteristics for each education
and literacy group are presented in Table 2.
Three overarching themes and related sub-themes were identied during the analysis: (1) understanding and experiences of
involvement in healthcare decision making; (2) inuence of the
patientpractitioner relationship, and (3) the perceived function of

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S.K. Smith et al. / Social Science & Medicine 69 (2009) 18051812

health information. These themes are not mutually exclusive and

there may be some degree of overlap between them. For example, the
way patients conceive their involvement is likely to affect how they
feel about the quality of their patientpractitioner relationship. The
analysis does not intend to imply any absolute differences between
the groups. The following notation indicates the educational and
literacy levels of respondents: HEd HL: higher education and higher

functional health literacy; LEd HL: lower education and higher

functional health literacy; LEd LL: lower education and lower functional health literacy (.) indicates omission of word repetitions and
hesitations of speech (i.e. um).
Understanding and experiences of involvement in healthcare
decision making
Roles and responsibilities associated with involvement

Table 2
Demographic characteristics by education and functional health literacy group.
Demographic

Education and health literacy group

Gender
Male
Female

Higher
education

Lower education

(1) Higher
health literacy
(n 32)

(2) Higher
health literacy
(n 24)

(3) Lower
health literacy
(n 17)

17
15

14
10

10
7

0
0

12
8

12
2

0
32

4
0

3
0

Current or former occupationa

Professional-managerial 26
Para professional
5
Skilled tradesperson
1
Semi-skilled
0
Unskilled
0
No former or current
0
occupation

0
0
12
10
2
0

0
0
2
4
6
5

Working status
Full time
Part time
Retired
Unemployed/looking
after family

18
7
7
0

11
5
6
2

4
2
8
3

32
0

24
0

14
3

20

13

Educational qualications
No formal qualications
Intermediate or higher
school certicate
Trade certicate
University degree

Main language spoken

English
Bilingual

Current health statusb

Chronic health condition
3
(e.g. diabetes, arthritis)
Minor/acute health
9
problem (e.g. food
intolerance)
Mental health condition
1
(e.g. depression,
schizophrenia)
None reported
19
NVS, mean (SD)c
6-item measure
TOFHLA score, mean (SD)
Literacy
Numeracy
Total
TOFHLA time, mean (SD)
Literacy
Numeracy
a

5 (0.9)

5 (0.9)

1 (1.0)

50 (1.0)
48 (1.7)
98 (2.0)

49 (3.3)
48 (3.3)
96 (6.2)

40 (9.3)
45 (4.7)
83 (14.3)

6 (1.5)
5 (1.1)

8 (2.8)
5 (1.6)

13 (5.0)
6 (1.5)

Australian standard classication of occupations.

Note: some participants had more than one health problem.
c
NVS Newest vital sign. Maximum score 6; <4 lower health literacy;
4 higher health literacy.
d
TOFHLA Test of functional health literacy in adults (scores 059 inadequate
health literacy; 6074 marginal functional health literacy; 75100 adequate
functional health literacy).
b

It was evident that all groups wanted information when a health

decision was being made, and were aware of the legal implications
for the doctor of not informing patients adequately.
If the patients involved with the decision making and theyve
been fully informed on the risks, then I suppose that helps
protect the doctor a bit in this age when blame is the culture of
the west (participant 206, age 55, male, HEd HL).
Nowadays, I think theyve [the doctors] got to explain it or if they
make a mistake they can get sued! (participant 133, age 62,
female, LEd HL).
Many higher education participants described their involvement as participating in the decision and sharing the responsibility with the doctor, with some suggesting this was to ensure
that they had ownership of the outcome. It was also seen to
potentially lead to less regret about a decision and avoid unnecessary treatment. Several higher education respondents felt that it
was important not to absolve, or pass over responsibility to
someone else. Responsibility was an important construct used to
explain having and feeling in control of decisions. Sharing
responsibility also meant having a good understanding of the
possible risks and not just signing forms that indemnied the
doctor. However, there were some who preferred more directed
consultations in which the doctor took the lead and offered
a denitive opinion.
Im not interested in understanding all the mechanics or you
know the pros and cons. I dont really want to make it a round
table a hug and kiss conference, where we all think about it
(participant 206, age 55, male, HEd HL).
For some higher education respondents, their role outside of the
consultation was equally important. Although they respected their
doctors expertise, they also described independently seeking
knowledge via the internet or another medical professional, to
conrm the practitioners information. Some described themselves
as proactive and informed patients, and felt that it was their
responsibility to read information. Again, this gave them a sense of
control and ownership of the process.
I guess an informed discussion, I mean I dont take it carte blanche.
Also I have to recognise that shes [referring to GP] got knowledge
that I dont have. So Id certainly test what she recommends and
what I know (participant 201, age 57, male, HEd HL).
The need to verify the doctors advice was partly due to the
belief that practitioners were fallible. Patients should, therefore, not
readily accept what they suggest or blindly follow their instruction,
because they are not gods. They also appeared involved in
negotiations about what options were available, rather than simply
consenting to recommendations. Accompanying the belief that
doctors were fallible, some also recognised that some patients had
unrealistic expectations of doctors.
We have this theory that doctors are better than human beings,
they have to produce the goods the whole time, they always have
to be on top of everything (participant 217, age 62, male, HEd HL).

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Conversely, lower education participants appeared to put more

weight on their practitioners recommendations, and relied on
them as a main source of information. In addition, they did not
explicitly describe that it was necessary to verify the practitioners
information or investigate alternative options, as higher education
participants had done. Some participants described having utter
faith in their doctors expertise, with one male participant likening
them to [religious] ministers.
Well look, Im a builder. If a doctor were to ask me why are we
building it?, he should take my advice because Im a builder. He
dont know nothing about it. Same as I dont know about
healthcare. Hes the one who should be listened to (participant
126, age 62, male, LEd LL).

1809

Some higher education participants also reported accessing

practitioners, recommended through their social position and circles.
Ive got doctor friends or people who I can go to. Again its a class
thing. Youve got people who are in the medical profession or
you know someone in the medical profession you can ask
(participant 222, age 56, female, HEd HL).
In contrast, lower education interviewees described the role
played by signicant others in their decision making, and valued
conferring with their partners and close friends.
Q: How did you make up your mind (about treatment)?
My husband would come with me to the appointments and he
would be there and we would just talk it over, while the doctor
was there and decide between us (participant 112, age 63,
female, LEd LL).

Respondents with lower education seemed to describe their

involvement in terms of having the last say, or giving consent to
the doctors recommendations. This entailed the practitioner presenting information, and then recommending the right decision,
but the patient having responsibility for the ultimate decision to
agree or disagree with the recommendation.

Others described how family members and friends acquired

health information on their behalf. Participants with lower functional health literacy in particular, reported obtaining information
from the internet via family and friends.

Hell [the practitioner] guide me to the right decision, what I

should do and what I shouldnt do. But then, the end decision is
mine (participant 129, age 62, female, LEd LL).

I go and see her [his daughter] if we want to nd out something

[about health], she gets on it [the internet] and nds it. Im
useless with a computer (participant 116, age 59, male, LEd LL).

Within the lower education group, some respondents with

higher functional health literacy described the relationship on more
equal terms, working in conjunction with practitioners, exchanging
information and expressing their views to reach a consensus.
I think its more a consultant [referring to the medical consultation], he [the doctor] doesnt tell me what to do and I dont tell
him what I want to do. Its more, we sit down and say to him
Look Ive got so on and so forth. Ive got a bad pain in the
shoulder. Hell tell me what it is and Ill say Ok.can I do it
myself? (participant 130, age 61, male, LEd HL).
Similarly, other accounts suggested that participants positively
valued practitioners discussing their health options in a noninstructive manner, and respecting that they could manage their
conditions with adequate information provision. But again, there
was no discussion of checking the doctors advice.
The role of the patient and signicant others in healthcare decisions
Some of the higher education participants viewed themselves as
resources for family and friends in their health decisions. This
entailed obtaining and interpreting medical information, encouraging them to seek professional advice, and advising on how to
converse with practitioners. Some participants also described
acting as surrogate decision makers, accompanying family
members to consultations, and negotiating on their behalf.
Again, with my father I used to go with him to the doctor. so
its not from my own experience but from my fathers point of
view. I found that we had to actually push for things to be done
(participant 203, age 57, female, HEd HL).
By contrast, lower education participants rarely talked about being
involved in others decision making. However, one opposing example
was found where a participant with lower education described the
involvement she played as her fathers primary caregiver.
I havent got a higher education unfortunately, but I still havent
let it stop me from reading and asking questions on what I dont
understand. I had my father with heart problems, and I used to
take him to the doctors and specialists, but Id always ask
questions (participant 105, age 57, female, LEd LL).

Inuence of the patientpractitioner relationship

Quality of interactions and relationships with healthcare
practitioners
Participants from all groups identied the quality of the patient
practitioner relationship as affecting their involvement. Many said
that they valued continuity, and having an ongoing relationship in
order to establish trust. Those with well-established relationships
reported feeling at ease with participating in decisions.
Mines a really great [relationship]. she helps you arrive at
decisions, or gives you several choices as to what to do
(participant 213, age 55, female, HEd HL).
Its a good relationship between the two of us. We can talk quite
comfortably with each other without worrying about making
those big decisions. I respect his knowledge and I know that he
wont say do this and thats it (participant 123, age 55, male,
LEd HL).
Regardless of education and functional health literacy, participants explained how they seek out doctors whose approach suits
their involvement.
I wouldnt have gone back [to the doctor] if they had tended to
be authoritarian (participant 212, age 64, female, HEd HL).
If I cant ask them questions I [the internet] dont go back again. I
probably went to four different doctors before I found one that
I liked (participant 133, age 62, female, LEd LL).
Participants also avoided practices that were thought to be
machines to make money and churn out patients, with little
opportunity to develop a personal relationship.
I dont like to go to medical centres where you never get the
same person twice, or you only see them once in a blue moon
and theyve gone through hundreds and hundreds of people and
they dont remember who you are at all. Id prefer to go to
a small private practice.to make sure the doctor knows me
(participant 141, age 58, female, LEd HL).
Practitioners interpersonal communication skills were regarded as particularly important for involvement. Participants with

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S.K. Smith et al. / Social Science & Medicine 69 (2009) 18051812

higher education positively valued being treated as an intelligent

human being who did not come from a position of ignorance.
I suppose being an educated person and realising that information is available, and I can understand it as much as they [the
doctors] can (participant 232, female, age 57, HEd HL).
Higher education respondents felt that their social position
affected how the doctor interacted with them. One male participant
believed that the doctor was more willing to engage with him
because he had a university education. Some participants also felt
that being a professional in another area inuenced their expectations of the consultation.
A desire for professional respect was not, however, described by
lower education participants. Instead, they placed a greater emphasis
on being treated as a person and not just a number. They valued
practitioners expressing a genuine interest in them, and understanding what kind of impact a disease could have on an individual.
They were also conscious of how a doctors communicative style could
hinder their involvement. Two participants described how practitioners with zero communication skills and abrupt manners had
made them feel legless and numbed in their responses.
Q: Whats good about your doctor?
He makes you feel at ease and thats a good thing. You dont want to
sit there dumb struck and that hes looking into the pad and not
talking to your face but looking you in the eye. I like him to sit up
and talk to you as a person (participant 121, age 56, female, LEd LL).
Although most participants described the importance of establishing a long-term relationship with a practitioner, a few lower
education participants felt that continuity did not necessarily
enhance involvement. One male participant felt that his long-term
relationship with his practitioner had deteriorated because they
had taken each other for granted, and his concerns were not taken
seriously, he pushed me to the side, and I didnt become important
to him as the next fellow. Similarly, after 30 years with the same
doctor, one female participant decided it was time to go to someone
else, who would be able to monitor her chronic health problems.
She felt that her former doctor appeared disinterested and they had
become too familiar with each other.
Negotiating with healthcare practitioners
In general, higher education interviewees described times when
they had queried the doctors judgment. One participant recounted
feeling fobbed off (deceived into accepting excuses or something
inferior), when she was told to stop complaining.its a bit of
arthritis. She subsequently challenged her doctor, and was offered
alternative options. Similarly, others described negotiating with their
doctors when they were dissatised with their prescribed medication.
I was getting side effects so I got back to the doctor and said
Look I have to get off this [medication] straight away, and she
agreed (participant 203, age 57, female, HEd HL).
In contrast, lower education participants described occasions
with practitioners where they could not reach an agreement. In the
example below, there were conicting viewpoints about surgery.
This resulted in the participant seeking another doctor.
He [the specialist] said You really need to rebuild the left [knee]
completely, and I said [participant in response] I dont, we are
not going to do that, I want it cleaned out rst and then we will
see what happens. And he [the specialist] said No I wont do it,
if I cant do it my way. I said [participant talking] Ok, ne, and
I went and got another specialist (participant 130, age 61, male,
LEd HL).

Some participants with lower functional health literacy

described times when they had followed their doctors recommendations without challenging their opinion.
I said [talking to the doctor] Ive been on that same tablet for
who knows how many years, probably about twenty years. Cant
I just get off it? He [the doctor] says No! Because its keeping
you normal. Get off it you might drop dead! He said keep taking
it (participant 116, age 59, male, LEd LL).
In the case above, the doctors emotive statements appeared as
though they were designed to encourage compliance in the patient.
Earlier in the interview, the participant had explained that he had
wanted to discuss alternative forms of medication. However, he did
not further question the doctor because he thought the doctor
knew best. There was also no report of discussion between the
doctor and patient as to why the patient wanted to stop his
medication, or whether there were other medications. The absence
of any reported further discussion between the patient and doctor
is important.
The perceived function of health information written
and oral
Psychosocial
Irrespective of education and functional health literacy,
participants described information as dispelling fears and giving
them the courage to ask informed questions and raise
problems that the doctor may not have considered. Being more
informed meant that they were not left in the dark or in
limbo. Information also helped them to come to terms with, and
take control of their health problems. Some higher education
participants also believed that information gave them a sense of
equality.
Educational and practical
All groups described how health information raised awareness
of issues, but those with higher education described searching for
information out of curiosity.
I go onto the net all the time, whenever I hear anything about,
say that a friend has, Im interested in it (participant 232, age 57,
female, HEd HL).
In contrast, lower education participants felt that information
enabled them to explain to their families what they were going
through, and often described being stimulated to acquire information when they had been diagnosed with a condition, such as to
learn about self-care management, or a medical procedure.
Unless youre involved in it, you dont worry about it, when you
have trouble, thats when you look [for information] (participant
107, age 61, male, LEd LL).
They also described written materials as backing up the oral
information they received, and vice versa.
Q: What are the benets of having information?
Its good reading it, but when you go to the specialists and they
are going over it with you. They refresh your mind. Because
sometimes you think that youve understood everything that
you read, but you miss out on a few things (participant 129, age
62, female, LEd LL).
However, they did describe feeling, at times, overdosed and
ooded with information.

S.K. Smith et al. / Social Science & Medicine 69 (2009) 18051812

They [health professionals] give you pamphlets and books. But

then you get a ood of them and you get sick of them (participant 101, age 58, male, LEd LL).
Decisional support
Participants from all groups viewed information as helping
them to consider their options and look at all angles or both
sides of the story.
The belief that information allowed the patient to make an
informed or rational decision was widely described by higher
education participants. They also recognised that information could
be dangerous, especially in circumstances where the patient makes
an inappropriate self-diagnosis. Critically, judging the authenticity
of the source was considered important, particularly information
online which could be inaccurate.
When people start looking for information [online] there is no
guarantee that they are getting good information. Im a little bit
wary of information thats out there, when its not under any
degree of control or peer review (participant 217, age 62, male,
HEd HL).
In comparison, although people with lower education valued
information they did not describe appraising the quality of it in any way.
Discussion
Our study suggests that people with different levels of education
and functional health literacy may conceputalise their involvement
in healthcare decisions in different ways. Higher education participants seemed to conceive their involvement as sharing the responsibility with their practitioner throughout the decision-making
process. Importantly, they recognised that doctors were fallible, and
did not regard them as their rst port-of-call. As such, they wanted to
verify the credibility of information and explore options beyond
those presented within the boundaries of the consultation. They
appeared more condent in challenging the doctor, and positioned
themselves as resources, actively searching for information and
making decisions on behalf of family and friends.
In contrast, the lower education sample appeared to conceive
their involvement as consenting to an option recommended by the
doctor, but having responsibility for the nal decision, to agree or
disagree with their suggestion. Unlike higher education participants, they did not describe conrming the practitioners advice,
nor seeking information about alternatives. This meant that they
were more constrained by the options presented within the
boundaries of the consultation. Although some challenged their
practitioner, they often avoided discordance by either accepting
their doctors opinion, or seeking medical advice from another
doctor. They also described how friends and family supported
them in their decision making, both within and outside the
encounter.
Participants with different levels of education and functional
health literacy wanted respect for who they were. Although, this
may not be surprising, it has important implications for the power
balance between the patient and practitioner. Higher education
participants described wanting respect for their professional status,
implying that they wanted consultations to be conducted in a nonhierarchical fashion, with the doctor treating them as equals
(Lupton, 1997). By contrast, those with lower education did not
explicitly describe that they wanted to be treated as equals. Instead,
they seemed to value doctors conveying empathy, and a genuine
interest in their personal circumstances.
Although our lower education sample varied in terms of their
functional health literacy skills, their accounts of involvement were

1811

very similar. Across the main themes, greater differences appeared

to exist between higher and lower education participants. This
suggests that a patients education (and all that this represents with
regards to a persons social position), as opposed to their functional
health literacy skill, may have more inuence on how they experience involvement and negotiate with practitioners.
Participants subjective sense of involvement including, whether
they felt listened to, understood, and supported, plays an important
part in their experiences (Entwistle et al., 2008, p. 11). This supports
recent lines of thinking to incorporate relational and affective
components such as, how patients and practitioners feel about the
nature and quality of their relationship within the conceptualisation
of patient involvement. This expands beyond whether patients are
provided with information about options and their preferences are
elicited (Entwistle & Watt, 2006; Montori, Gafni, & Charles, 2006).
Regardless of their education and functional health literacy,
participants described features of the patientpractitioner relationship integral to involvement. In particular, continuity was considered
important for establishing and maintaining mutual trust and respect.
This was achieved by purposefully seeking a practitioner compatible
with their desired level of engagement and choosing a practice
setting conducive to developing a relationship (McKinstry, 2000). In
Australia, it is possible for patients to doctor shop (seek care from
several different practitioners), until a preferred one is found. While
this strategy was acknowledged by all groups, participants with
lower education described using this strategy when they did not
want to challenge their current practitioner.
The potential differences between patients from different education and literacy groups may be seen within Bourdieus framework of
social interaction, and its four key concepts: habitus, eld, capital and
practice (Bourdieu,1999). The notion of habitus (unspoken rules about
how to behave in everyday situations, inuenced by cultural and
educational background) was particularly prominent in participants
accounts of conversing with practitioners in the eld (social space) of
healthcare. For instance, they appeared conscious of the educational
and social distance between themselves and the doctor, and the
implications this has for the hierarchy within the doctorpatient
relationship. The concept of capital (resources a person can draw upon
during social encounters) was also prominent. Medical discourse, for
example, can be described as a form of symbolic capital and is the
dominant language used within the healthcare context. Mastery of
this legitimate language may be inuenced by a persons education
and familial background (Bourdieu, 1991). Patients from lower socioeconomic groups may have limited access to forms of capital, and be
less familiar with strategies or game-playing (Dixon-Woods et al.,
2006, p. 2744) used to negotiate with medical professionals, limiting
their power to control the interaction: knowledge and access to those
practices put some people in more potentially powerful positions
than others (Thornborrow, 2002, p. 6).
This study has a number of strengths and limitations. Strengths
include the use of a qualitative approach to capture the complexity
and diversity of accounts of involvement from different education
and literacy perspectives. This has not been previously done. It is
also one of the rst studies to differentiate between education and
functional literacy skill to see how they affect understandings of
involvement. However, focusing specically on education and
literacy meant that we did not analyse the data by gender or
ethnicity, but we recognise the potential importance of such socio
demographics on involvement. Furthermore, our sample did not
include adults with very basic literacy skills. Exploring how
patients with very basic literacy skills experience involvement is an
important focus for future research.
The ndings lend support to the broader notion of health
literacy. In their accounts, participants reected on the strategies
and skills they use when involved in health decisions. This included

1812

S.K. Smith et al. / Social Science & Medicine 69 (2009) 18051812

(to some degree or other); how they obtained information, interacted with health professionals, and advocated for others. They also
thought carefully about what health information enabled them to
do. The skills required to carry out these activities require more
than just the application of functional health literacy skills; they
require the application of interpersonal and negotiation skills
(Nutbeam, 2000). This nding has implications for the measurement of health literacy, and highlights how current tools do not
capture competencies reected in broader denitions. Further
work is needed to develop comprehensive instruments that assess
a wider range of skills (Baker, 2006; Nutbeam, 2008).

Implications for practice

If healthcare practitioners aim to foster involvement in decision
making across the broad spectrum of the community, they need to
be aware that some patients may not feel able to ask questions and
negotiate with doctor. Communication strategies such as empathy
and reassurance and respecting patients as individuals (as reected
in the patient centred approach to healthcare) may be particularly
benecial to facilitate involvement for patients with lower education and literacy (Mead & Bower, 2000; Roter, 2005).

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