ARTICLE IN PRESS

0277-9536/$ - se

doi:10.1016/j.so

�Correspond0131-6506902.

E-mail addr

Social Science & Medicine 60 (2005) 1423–1435

www.elsevier.com/locate/socscimed

Lay perceptions of type 2 diabetes in Scotland: bringing healthservices back in

Julia Lawtona,�, Elizabeth Peelb, Odette Parryc, Gonzalo Araoza,Margaret Douglasd

aResearch Unit in Health, Behaviour and Change, School of Clinical Sciences and Community Health, University of Edinburgh,

Medical School, Teviot Place, Edinburgh EH8 9AG, UKbLife and Health Sciences, Aston University, Birmingham B4 7ET, UK

cSocial Inclusion Research Unit, University of Wales NEWI, Plas Coch Campus, Wrexham LL11 2AW, UKdLothian NHS Board, Deaconess House, 148 Pleasance, Edinburgh EH8 9RS, UK

Abstract

The growing prevalence of type 2 diabetes is placing Scottish health services under considerable strain. Consequently,

diabetes services are undergoing a major process of reorganisation, including the devolvement of routine diabetes care/

diabetic review from secondary to primary healthcare settings. This qualitative study was devised to explore newly

diagnosed type 2 diabetes patients’ perceptions of their disease and the health services they receive at a time when this

restructuring of services is taking place. The sample comprised 40 patients resident in Lothian, Scotland, who had

diverse experiences of services, some receiving GP-based care only, others having varying contact with hospital diabetes

clinics. In-depth interviews were undertaken with patients, three times at six monthly intervals over 1 year, enabling

their experiences to be tracked at critical junctures during the post-diagnostic period. Disease perceptions and health

service delivery were found to be mutually informing and effecting. Not only did (different types of) health service

delivery influence the ways in which patients thought about and self-managed their disease, over time patients’ disease

perceptions also informed their expectations of, and preferences for, diabetes services. We thus argue that there is a need

for a reconceptualisation within the medical social sciences to take into account the context of healthcare and the

economic/policy factors that inform health service delivery when looking at patients’ disease perceptions. We also

discuss the logistical and ethical challenges of drawing upon patients’ perspectives, preferences and views in the design

and delivery of future health services.

r 2004 Elsevier Ltd. All rights reserved.

Keywords: Diabetes; Lay understandings; Health service delivery; Self-management; Scotland; UK

Introduction

In recent years, the medical social sciences have

shifted from treating patients’ disease perceptions as a

e front matter r 2004 Elsevier Ltd. All rights reserve

cscimed.2004.08.013

ing author. Tel.: +44-0131-6506197; fax: +44-

ess: j.lawton@ed.ac.uk (J. Lawton).

product of micro-encounters in the medical context (e.g.,

consultations with health professionals) to an approach

which embraces the notion that disease understandings

are ‘‘grounded in the context of day-to-day living

situations and experiences’’ (Hunt, Jordan, & Irwin,

1989), as well as being a product of people’s social

histories (Blaxter, 1983). Arguably, this shift is partly a

response to the perceived limitations of Parsons’ (1951)

d.

ARTICLE IN PRESSJ. Lawton et al. / Social Science & Medicine 60 (2005) 1423–14351424

early work on the ‘sick role’. In this, central and

fundamental importance was given to the medical

encounter in the naming, framing and legitimisation of

disease. According to Parsons, doctors’ knowledge and

authority are paramount, patients simply being passive

recipients of healthcare, with a responsibility to comply

with their doctors’ instructions and to get better.

Parson’s work has been critiqued on many fronts, most

notably because his concept of the ‘sick role’ is more

applicable to acute (i.e. temporary) than chronic ill-

nesses, the latter now forming the burden of ill-health in

the UK and elsewhere (Bury, 1991; Conrad, 1990).

Relatedly, as Crossley (1998) has pointed out, the

assumptions of dependency implicit within his concept

of the ‘sick role’ are being increasingly contested by

ideologies of ‘patient empowerment’, which present a

vision of the ‘sick’ individual as ‘independent’ and

‘proactive’, especially in the management of chronic and

long-term illnesses. Finally, as Hunt and colleagues have

observed, encounters with medical systems tend only to

constitute a small part of most patients’ lives. Thus, the

medical contribution to patients’ ‘sense-making’ tends,

in reality, to be overwhelmed by the circumstances and

experiences encountered in the extra-medical social

environment (Hunt et al., 1989). Hence, whilst Parsons’

ideas have not been abandoned altogether (e.g., Rier,

2000), the medical social sciences have increasingly

moved away from what Conrad (1990) has termed an

‘outsider perspective’ (epitomised in the concept of the

‘sick role’) to an ‘insider perspective’ concerned with

patients’ subjective experiences in the contexts of their

everyday lives.

By and large this conceptual shift has been welcomed,

as it has contributed greatly to our understandings of

patients’ everyday illness experiences outside the medical

setting (Lawton, 2003). For example, a great deal is now

known about the challenges and complexities of living

with, and managing, chronic and other diseases in the

face of competing factors such as: work and family

commitments (e.g. Pinder, 1995; Radley, 1989); econom-

ic constraints (e.g. Anderton, Elfert, & Lai, 1989;

Drummond and Mason, 1990); and/or the desire to feel

‘normal’ and be seen as ‘normal’ by others (e.g. Atkin

and Ahmad, 2000; Scambler and Hopkins, 1987).

Similarly, an expanding corpus of work has drawn

attention to the ways in which lay perceptions of

diseases and disease causation may differ and sometimes

conflict with medical models (e.g. Blaxter, 1983;

Davison, Smith, & Frankel (1991); Emslie, Hunt, &

Watt, 2001). As various studies have demonstrated,

people may draw upon a variety of factors other than, or

in addition to, medical information/knowledge to

account for why they have become unwell (e.g. Linn,

Linn, & Stein, 1982; Thompson & Gifford, 2000).

Furthermore, the particular accounts they present may

partly serve as a rhetorical device for locating themselves

as ‘moral agents’ within the wider socio-political order

(Williams, 1984). Other work suggests that contextual

factors, such as people’s position in the lifecourse and/or

their socio-economic backgrounds, may mediate and

inform their disease perceptions (e.g. Pound, Gompertz,

& Ebrahim, 1998), including whether they consider their

condition to be ameliorable to treatment or cure (e.g.

Cunningham-Burley, Allbutt, Garraway, Lee, & Rus-

sell, 1996).

But in our enthusiasm to understand and situate

patients’ disease perceptions, experiences and under-

standings in the settings of their everyday lives, have we

pushed the medical context too far to the sidelines? This

question was brought to light in Hart’s (2001) study of

stroke survivors, in which she found that patients’

experiences were as much dictated by the health and

social care services put in place in the aftermath of the

stroke, as they were by other factors. Hart observed, for

example, that a lack of support and/or inappropriate

referrals/discharges could engender unnecessary frustra-

tion, vulnerability and despair in patients. Hence, she

calls for an approach to illness experiences that

recognises a dynamic interplay between ‘survivor’ and

the healthcare ‘system’, whereby one impacts on the

other (2001, p. 120).

The idea that patients’ illness experiences/understand-

ings are entwined with the healthcare ‘system’ became

very pertinent in a recent qualitative study we undertook

with newly diagnosed type 2 diabetes patients resident in

Lothian, Scotland (UK). This study drew our attention

to ways in which different types of health service

delivery could influence patients’ disease perceptions,

at the same times as patients’ disease perceptions could

inform their expectations of, and preferences for, their

future diabetes care. This paper focuses on the meanings

and understandings patients attach to the kinds of

services they receive and to the types of healthcare

professionals they encounter as part of their diabetes

care. We also use the findings to illuminate the logistical

and ethical challenges of incorporating a ‘user perspec-

tive’ into the design and delivery of future health

services.

Background to the study

Type 2 diabetes is a chronic condition, with a multi-

factorial aetiology. Hence, considerable onus is placed

upon individuals to self-manage their disease (van den

Arend, Stolk, Krans, Grobbee, & Schrijvers, 2000). Self-

management is achieved through attention to lifestyle

(e.g. adopting a healthy diet and/or taking more

exercise) as well as, in some cases, by taking tablets

and/or insulin to improve blood glucose control.

Patients who do not adhere to recommended diabetic

regimens are at increased risk of premature death and/or

ARTICLE IN PRESSJ. Lawton et al. / Social Science & Medicine 60 (2005) 1423–1435 1425

of developing complications such as heart disease,

stroke, renal failure, amputation and blindness (UKPDS

(UK Prospective Diabetes Study Group), 1998). Thus,

considerable concern has been expressed about the

generally poor adherence that has been observed

amongst patients with type 2 diabetes. Not only do

many patients struggle to follow disease risk-manage-

ment advice (Sullivan & Joseph, 1998), commitment to

disease self-management may also decrease over time

(Lawrence & Cheely, 1980), even when patients receive

extensive information and advice (Snoek, 2002).

Given the chronic and progressive nature of the

disease, many professionals promulgate the view that

there is no such a thing as a ‘mild’ diabetes (Diabetes

UK (2004), see also Cohen, Tripp-Reimer, Smith,

Sorofman, & Lively, 1994). However, this view is often

not shared by patients, many of whom, despite receiving

education, do not consider type 2 diabetes to be a

potentially serious condition that can lead to complica-

tions such as heart disease (Cohen et al., 1994).

Furthermore, even if patients do recognise that type 2

diabetes is a potentially serious condition, they may

perceive themselves as being personally immune to its

complications (Murphy & Kinmonth, 1995). Poor

adherence amongst patients with diabetes has been

attributed to many factors, such as a desire to socialise

with others (Kelleher, 1988), and the need to fulfill

gendered obligations of care (Hepworth, 1999). How-

ever, particular salience has been given to patients’

‘misperceptions’ regarding the potential seriousness of

the disease (Anderson, Fitzgerald, & Oh, 1993; Snoek,

2002), as well as to differences between their under-

standings of the disease and those of medical profes-

sionals (Schoenberg, Amey, & Coward, 1998).

Type 2 diabetes is reaching epidemic proportions in

the United Kingdom (UK) and elsewhere (Bagust,

Hopkinson, Maslove, & Currie, 2002), a situation partly

attributable to rising levels of obesity within the general

population and the adoption of more sedentary life-

styles. The growing numbers of people affected by the

disease is putting diabetes services under considerable

strain, prompting a major reorganisation of services in

Scotland, as elsewhere in the UK. Until recently,

hospital clinics have been the main province for the

provision of routine diabetes care and diabetic review;

however, increasingly, this care is being devolved to

general practice, where it is provided by general

practitioners and nurses who have undergone special

training in the care of people with diabetes, supported

by community-based chiropodists and opticians/opto-

metrists (Goyder, McNally, Drucquer, Spiers, & Botha,

1998). Various initiatives are also being implemented

under the National Diabetes Frameworks to ensure that

patients receive more integrated services and regular

(normally annual) reviews, such as the introduction of

diabetes registers (Department of Health, 2003).

To date, the redesign of diabetes services has occurred

without much account being taken of patients’ own

perspectives. This study was thus devised to examine

patients’ experiences and views of Scottish diabetes

services, in order to inform future service delivery for

these patients. In particular, we aimed to explore

whether the changes in diabetes services provision

currently taking place in Scotland had any implications

for ways in which patients thought about and self-

managed their condition. The study focused on newly

diagnosed patients as these patients face particular

challenges adjusting to their disease. As various studies

have demonstrated, the post diagnostic period is a time

when patients are likely to be referred to a variety of

services and professionals, encouraged to assimilate a

wide body of information about diabetes and its

management, and will normally begin to make emo-

tional, psychological and practical adjustments to their

disease (Campbell et al., 2003; Maclean & Goldman,

2000).

Study design

Given the exploratory nature of the study, a

qualitative approach was deemed appropriate, as this

would allow themes and hypotheses to be identified and

tested during the data collection period, rather than

simply assessing those formulated at the study’s outset

(Britten, Jones, Murphy, & Stacy, 1995). As the period

following diagnosis is likely to be an eventful time for

patients (see above), we adopted a repeat rather than

single interview design. As Conrad (1990) suggests,

repeat interviews are particularly appropriate for studies

of chronic illness experiences as they allow process and

change to be captured and examined in-depth. Repeat

interviews are also less likely to be biased by retro-

spective (re-)interpretations of participants, and create

opportunities for trust and rapport to develop between

interviewer and participants, which may improve the

quality of the data (Mathieson, 1999). In all, three in-

depth interviews were conducted with each patient over

1 year (at baseline, 6 and 12 months later), enabling their

perspectives to be captured at critical junctures during

the post-diagnostic period. Additional data were col-

lected by means of fieldnotes in which the research

fellow (EP) documented information and insights that

patients communicated before/after the tape recorder

was switched on/off.

Subjects and settings

Forty patients with type 2 diabetes living in Lothian

(Scotland) were recruited to the study within 6 months

of being clinically diagnosed. Following approval from

ARTICLE IN PRESS

Table 1

Demographic characteristics of sample

Sex Age at first interview (years)a Socio-economic groupb

F M 21–40 41–50 51–60 61–70 71+ I–II IIIN IIIM IV–V

18 22 7 12 9 10 2 10 12 13 5

aMean age=53.5, median age=50 (range 21–77).bSocial class was assessed using the Registrar General’s classification.

J. Lawton et al. / Social Science & Medicine 60 (2005) 1423–14351426

the Lothian Research Ethics Committee, patients were

recruited from three hospitals and 17 GP practices in

four Local Healthcare Co-operatives (LHCCs) in

Lothian, which were at different stages of devolving

diabetes care to general practice. (LHCCs in Scotland

are voluntary groupings of GPs and other local

healthcare providers and are intended to strengthen

and support the primary healthcare team in delivering

local care.) This multi-sited recruitment strategy was

used to maximise the chances of obtaining a sample that

had different experiences of diabetes services, thereby

making it possible to explore the implications of the

broader shifts in diabetes service delivery from patients’

perspectives. Purposive selection was used to achieve a

sample that was broadly representative of all newly

diagnosed patients in Scotland in terms of age, social

class and gender (Morris et al., 1997)—see Table 1 for

details of the sample. Only one patient, a Pakistani

woman, came from an ethnic minority background.

Data collection

Round 1 interviews were conducted between April

2002 and July 2002, Round 2 between October 2002 and

January 2003 and Round 3 between April 2003 and July

2003. Most interviews took place in patients’ own

homes, averaged 1 h, were tape-recorded with patients’

consent, and transcribed in full.

A variety of topics were explored in the interviews and

included: (1) experiences of diagnosis; (2) impact of

diagnosis on self and others; (3) perceptions of the

causes of one’s diabetes; (4) contact with health services

since diagnosis/last interview; (5) perceptions of the

disease and current/future health; (6) changes to

prescribed diabetic regimens since diagnosis/last inter-

view; (7) intention/commitment to adhere to diabetic

regimens and other disease risk-management advice;

and, (8) views about current service provision and

preferences for future diabetes care.

For each patient, earlier interviews were read and

reviewed before later interviews were conducted. When

appropriate, additional questions were added to the

interview schedules, permitting the follow-up of parti-

cular issues raised by individual patients.

Analysis

In line with the principles of grounded theory (Glaser

and Strauss, 1967), data collection and analysis took

place concurrently, with the issues, themes and hypoth-

eses identified in the early rounds of interviews being

used to inform the areas of investigation in the later

rounds. Three members of the team (JL, EP and OP)

repeatedly read through and cross-compared the tran-

scripts, each undertaking her own thematic analysis.

This analysis also included a temporal component, in

which individual patients’ experiences were tracked over

the year of the study, with particular attention being

paid to any changes that took place. Regular team

meetings were held both during and after data collection

to explore patients’ underlying reasoning, to discuss

deviant cases and to reach agreement on recurrent

themes. Once consensus regarding themes had been

achieved, data were organised into initial and higher

codes. NUD*IST, a qualitative data-indexing package,

was used to facilitate data coding and retrieval

(Boyatzis, 1998).

Findings

Service contact

By employing a multi-sited recruitment strategy we

were successful in recruiting patients who had diverse

and changing experiences of diabetes services during the

year of the study. Five patients received all of their

diabetes care in general practice. The remainder ðn ¼ 35Þ

had varying contact with hospital personnel and

services. Virtually all patients who were referred to

hospital reported receiving an initial package of care

which included structured education classes with other

patients, a variety of clinical tests, and, finally, a

consultation with a diabetes consultant.

In most cases, the type and amount of contact with

services were determined as much by the LHCC or

general practice to which patients belonged as by their

clinical condition (it should be noted here that virtually

all patients reported remaining free of diabetes-related

complications during the study). All patients who

ARTICLE IN PRESSJ. Lawton et al. / Social Science & Medicine 60 (2005) 1423–1435 1427

received GP-based care only were registered at a practice

that had its own diabetes clinic and/or GP and nurse

who had received training in the care of diabetes.

Likewise, patients who were discharged from hospital

following their meeting with a consultant tended to be

those who belonged to a general practice which had the

necessary resources and expertise to provide on-going

diabetes care and diabetic review.

Patients, however, generally seemed to be unaware of

the broader structural influences, and drew upon a

different set of meanings and understandings when they

reflected upon the nature and settings of their diabetes

care. By way of an illustration, we begin with a case

study involving a patient called Mary (all names used

are pseudonyms). In some ways this constitutes an

extreme example, as Mary was one of few patients who

took part who received GP-based care only and she also

appeared to be more reluctant to contemplate her future

than most of her fellow patients. Her case study has been

chosen because it encompasses and highlights a number

of underlying and interconnected issues, which we will

show to be salient, either entirely or in part, to the other

patients who took part.

Case study—Mary

Mary, 47, originally presented to her GP with what

she thought were symptoms of the menopause. She

claimed to be relieved when she found out she had

diabetes as, ‘‘in the last 6 months of last year, I kept

thinking, ‘oh god what’s wrong? Is this what middle age

is all about? I’m always tired.’’’ Mary’s GP immediately

prescribed tablets (Metformin) for blood glucose con-

trol. During her round 1 interview, conducted a few

weeks after she had received her diagnosis, Mary

expressed a lack of confidence in her GP. She said her

GP was ‘‘not an expert’’ and described how she had to

refer to a book on diabetes at several points during the

consultation, an experience that was ‘‘not all that

comforting’’.

Apart from seeing her GP twice, Mary had also

received and attended an appointment with a dietician

based at her general practice who, she claimed, ‘‘didn’t

tell me anything I didn’t know already, she was just

talking about food, well, if you watch one night of

television, aye’’. She had been instructed by her GP to

have her eyes tested by a community-based optician,

which she said she had done, and also to see a podiatrist

which, as she pointed out, she had to do anyway because

she had a recurrent problem with in-growing toe nails

and had been seeing a chiropodist regularly for many

years. Mary also said she had been ‘‘surprised’’ that she

had not received a referral to a hospital diabetes clinic.

She concluded that this had not occurred because ‘‘you

had to be, I don’t know, maybe 20 times worse than I

amy before you got referred. I just assumed that. That

it must be if you are really bad you know.’’

Mary went on to suggest that having diabetes had had

no impact on her life. Changing her diet, for example,

had remained ‘‘very much at the back of my mind’’,

despite being told by her GP and the dietician that she

needed to lose weight. With regards to becoming more

physically active, Mary said: ‘‘I would like to say yes,

but I keep, every week I say right ok this is the week

you’re going to do something [but] it hasn’t happened.’’

Mary concluded the first interview by expressing a wish

to speak to ‘‘somebody who is an expert and has more

time than just a general practitioner who knows a wee

bit about everythingy somebody who could maybe tell

me things that I hadn’t thought to ask.’’ Her comments,

however, were also tinged with ambivalence. For

example, when asked if she had actively sought out

additional sources of information and support, she

responded: ‘‘I’m a bit burying my head in the sand, you

know, don’t tell me the worst case scenario, thank you

very much.’’

Mary attended her general practice only once between

her round 1 and round 2 interviews to have a blood

sample taken. She said that she was meant to have gone

for a further blood test shortly before her round 2

interview, but had not done so because ‘‘I couldn’t be

bothered’’. She also confessed to being ‘‘a bit erratic’’

about taking her tablets: ‘‘I’m very bad for the one

during the day, I forget that’’, and said that she was

‘‘really struggling’’ with her diet. When she talked about

her eating habits, she made repeated references to ‘‘being

naughty’’ and to ‘‘doing wrong’’. She described how her

weight was ‘‘creeping up’’, probably ‘‘because I’ve got a

bit complacent, I must admit.’’ During this second

interview, Mary made repeated references to her

diabetes ‘‘not being serious at all’’ and as being ‘‘very

insignificant in the big scheme of things.’’ In fact, she

claimed not to have given her diabetes ‘‘an awful deal of

thought’’, in large part because, ‘‘mine’s not in any way

impairing my life. It’s just not. I can still work, I can still

go out, I can still do my garden, I can, you know, my life

hasn’t changed any.’’ She went as far as to suggest that

she did not even see her diabetes as ‘‘an illness’’ and to

speculate that her disease might not be permanent.

However, some of her comments also indicated a more

complex picture. For example, when asked whether she

was aware of any complications patients with type 2

diabetes can develop, she responded, ‘‘we’ll not worry

about them going wrong in the future’’ and promptly

changed subject.

In her third interview, Mary reported that she still had

not lost any weight, despite the original exhortations

from her GP to do so. As in her second interview, she

continued to maintain that she did not consider herself

to have an illness because her diabetes ‘‘never affected

me one way or the other’’, and ‘‘the doctors and that

ARTICLE IN PRESSJ. Lawton et al. / Social Science & Medicine 60 (2005) 1423–14351428

don’t seem that worried about me’’. In contrast to her

first interview, however, Mary now expressed very low

expectations of diabetes services. She gave no indication

that she still wanted to consult a diabetes expert; indeed,

she suggested that the only thing she wanted and

expected healthcare professionals to do was to prescribe

her medication. She did make it clear, however, that she

preferred receiving care in general practice to hospital:

Oh no, I couldn’t be bothered trailing away up

therey Because to me, a hospital is a bit-it’s a bigger

step towards you’re really ill than just, well, ‘‘Come

back in three months and we’ll see,’’ that’s OK. But if

somebody turns round and says ‘‘Now you’ll be

attending the hospital’’, you’re thinking, ‘‘Oh really,

it’s only ill people that go to hospital’’ y’know.

She concluded her third interview by expressing the

hope that her contact with services would ‘‘get less and

less’’ in the future.

Disease perceptions and health service delivery

Mary’s case study will be referred to at various points

because of the rich and complex themes it brings to the

fore; most notably, the dynamic interplay it suggests

between disease perceptions on the one hand and health

service delivery on the other. Indeed, whilst other factors

are also at play (see below), Mary, in common with

other patients, appears to have made a number of

inferences and assumptions about the nature and

progression of her diabetes on the basis of the services

she received—an issue that will be teased out in detail

below. As will also be demonstrated, the relationship

between disease perceptions and service delivery is

neither singular nor uni-directional, for not only can

health service delivery inform the ways in which

patients, such as Mary, think about their disease, but,

over time, patients’ perceptions and understandings of

their disease may also inform their expectations of, and

preferences for, diabetes services. We begin, however, by

highlighting an (embodied) experience, which many

patients shared, as, in many cases, this forms a necessary

backdrop against which to situate their experiences and

views of services.

(Dis-)embodied states

Mary, as we have seen, originally went to see her GP

because she was suffering from extreme tiredness, a

common symptom of diabetes that was subsequently

controlled through the tablets she was prescribed. What

is salient to note here is that, at the point at which she

began to feel better, Mary ceased to see herself as having

an illness; indeed, she went as far as to speculate that her

diabetes might go away, if it had not done so already.

Mary was not alone in this regard. Many other patients

were also symptom and complication free when they

took part in the interviews, and they, likewise, struggled

to conceptualise or accept that they had an illness, since,

from an embodied, experiential perspective, they felt

well. This experience was especially marked amongst

asymptomatic patients whose diabetes had been detected

through screening procedures, such as a routine urine

test given after a patient had registered at a new general

practice (see Peel, Parry, Douglas, & Lawton, 2004a).

For these patients, the onset and detection of their

diabetes was not experienced as a wholly ‘biographically

disruptive’ event (Bury, 1982), as the disease, which was

invisible from their perspectives, did not bring about a

heightened awareness of the body and its contingent

nature (see also Leder, 1990), nor did it undermine their

physical ability to enact their daily tasks. Indeed, some

of these patients went as far as to challenge their

diagnosis by suggesting that healthcare professionals

were creating a problem where one did not exist, or that

they were simply buying into temporary fads:

I didn’t have any symptoms whatsoever that eh I felt

like saying to him [GP] ‘‘Are you sure?’’ n’ he says

‘‘Look, you just think we’re mischief making’’, and I

thought, ‘‘oh hell, there’s a lot of truth in that.’’

(Lindsay)

I just wonder how many other people are like me cos

they seem to go through five year- I call it the five

year cycle. It was the cholesterol for five years, then it

was the high blood pressure for five years and now

it’s the diabetes, y’ know. So what’s going to be the

next thing, y’know? (Mark)

Service influences

In the absence of embodied/internal symptoms and

complications, patients often looked to external factors

in order to establish and monitor the nature and

progression of their disease. As Mary’s case study

demonstrates, patients could make intuitive and see-

mingly commonsensical assumptions about their disease

and the threat it posed to their health on the basis of the

services to which they were or were not referred. Mary,

for example, gave the very strong impression in all of her

interviews that there was little, if anything, about the

health services with which she had had contact that had

indicated to her that she had a potentially serious

disease. For example, she did not regard her referrals to

the community-based podiatrist and dietician as being

remarkable, as she already received regular foot care for

in-growing toenails (a condition most people would

consider benign), and, according to her, the dietician did

not proffer any advice which differed from the healthy

eating messages she had encountered before she found

out she had diabetes (hence her comment that the

ARTICLE IN PRESSJ. Lawton et al. / Social Science & Medicine 60 (2005) 1423–1435 1429

dietician did not tell her anything she did not know

already). Particularly striking in her interviews, how-

ever, is the assumptions she had made about why all of

her care had remained in general practice. Mary, like

most other patients who took part in the study,

perceived hospitals as places where ‘‘you really get

looked after’’ (Ellen) because they are frequented by

diabetes consultants (i.e. specialists) who provide ‘‘the

ultimate knowledge’’ (Andy). Accordingly, not receiving

a hospital referral and/or having to wait for what was

perceived as a long time for an appointment to come

through were commonly interpreted by patients as

indicating that they could not have a potentially serious

disease:

My own doctor wasn’t too concerned about it I don’t

think. She certainly didn’t say she was going to send

me into a diabetes clinic and things like that. (Fraser)

I thought, ‘‘well that must be good’’ as I say because

I feel they’ve [GP] done all these tests and if it was

really bad they would have said ‘‘Oh we’ve got to get

her in quicker than the 18th of July sort of thing’’.

(Pauline – waited three months for a hospital

appointment).

As patients often saw hospital consultants as the

‘experts’ and GPs as ‘non-specialists’, some attached

considerable importance to having their diagnosis

confirmed in the hospital setting and perceived them-

selves as being in a state of liminality (Van Gennep,

1972), neither healthy nor sick, until this confirmation

had taken place:

At the moment I feel that I’m still sort of on

probation, you know, whether I’ve got it or not

[laugh]. Well, I mean they’ve [GP] said I have and

that’s alright but erm – I’m not being snooty about

this – but I’d like to hear it from the top man

[consultant diabetiologist]. (Eric)

For some of these patients, the visit(s) to the hospital

and attention received in this setting also brought about

what O’Connor, Crabtree, and Yanoshik (1997) have

termed a ‘‘conversion experience’’. Conversion experi-

ences typically involved a sudden change in perspective,

in which patients reported being ‘shocked’ into a

realisation that their diabetes posed a serious threat to

their health. These experiences tended to be most

pronounced at the point at which patients received a

comprehensive battery of clinical tests, which included

foot and eye examinations. Being on the receiving end of

several different tests at the same time, as some patients

described, heightened their awareness that their diabetes

could damage many facets of their health:

I’ll tell you how it really hit me, when I went for my

kinda like – when she checked my feet and for all the

pulses. I thought ‘‘oh my god I’ve got this for the rest

of my life.’’ That’s when it hit me y ‘‘-if I don’t

control this, this is going get worse and worse’’.

(Ellen)

I said to her [nurse] ‘‘Och I’ll be fine’’ [Laugh] and

then when she said: ‘‘Right we’ll do your blood

pressure, we’ll do your weight and we’ll do this’’ –

and I said, ‘‘wait a minute this sounds as if it’s a bit

more serious than I was taking it.’’ And she says,

‘‘Yeah a lot of people are like that just think that if

it’s diet [-controlled only] you’re finey but there is a

lot more you’ve got to look after.’’ (Iris)

Discharge from hospital, however, could have the

reverse effect. As indicated above, patients’ care was

normally returned to general practice following their

appointment with the consultant, provided that their

practice had the necessary resources to provide annual

diabetic reviews. Patients, however, rarely understood

that their discharge had occurred because of the broad

restructuring of services taking place in Lothian. On the

contrary, they tended to assume that their care was to be

general practice-based because their diabetes was not a

serious enough condition to warrant the ‘disciplinary

gaze’ (Foucault 1991) of diabetes ‘experts’ in hospital:

Well they said ‘‘you don’t have to go back to

hospital,’’ which is a good thing ‘cos if you’ve got to

keep going back there then there’s something wrong

with you eh. At the end of the day you just go to your

GP. So that’s one thing that’s not as, not as serious as

well. (Martin)

I thought, ‘‘well maybe I am just a borderline case’’

(Walter).

Perceptions of, and preferences for, services

Virtually all the patients held pragmatic views about

health service delivery in Scotland. There was a general

consensus that, within the ‘cash struck’ National Health

Service, long waiting times were sometimes inevitable,

and short appointments, whilst not desirable, were

something that had to be tolerated.

It’s just in the year 2001 or whatever you want to call

it, it’s just nobody’s got time. I’m talking right across

the board -I don’t mean just doctors, I mean virtually

everybody when it comes to work, there’s just not

enough hours in the day. (Douglas)

Against this backdrop, however, patients differed

notably in the extent to which they had strongly held

and carefully considered views about the particular

services they had received, and their preferences for

future diabetes service delivery.

Some patients, like Ryan for example, reported very

high expectations of services throughout the study.

Ryan claimed that he took his disease ‘‘very seriously’’

ARTICLE IN PRESSJ. Lawton et al. / Social Science & Medicine 60 (2005) 1423–14351430

from the outset, partly because he had read widely about

diabetes and its complications after his son had been

diagnosed a few years previously. Indeed, he talked in all

three of his interviews about wanting to ‘‘be able to play

golf in retirement and not on tin legs’’. He was an

extremely motivated patient who claimed to have made

active efforts to lose weight. He had also stopped

smoking and drinking. Ryan’s perception of his disease

appeared to fuel his expectations of services. Like

O’Connor et al.’s (1997) diabetic patients who had

undergone a ‘conversion experience’, Ryan wanted his

healthcare professionals to take his diabetes as seriously

as he did. Indeed, he described the initial care he

received in general practice as ‘‘the complete antitheses’’

to that received in the hospital diabetes clinic to which

he was referred. In hospital, ‘‘they’ve been extremely

attentivey very thorough, very professional y pleased

to answer questions and give advice’’. Furthermore,

‘‘they’re [diabetes consultants] geared up for it, they

understand it, they’ve experienced or they’ve come

across probably any scenario you could imagine with a

diabetic whereas a GP probably hasn’t.’’ Ryan’s

diabetes care remained hospital-based for the remainder

of the study. When he was invited to reflect on the

services he had received in his last interview, he made it

very clear that he wanted his diabetes care to remain

hospital-based in the future. As he suggested:

I think there needs to be a realisation and acceptance

that the GP, I don’t think, has a very major role to

play in this y for something as potentially as

significant as diabetes it’s a specialist you want to see,

not a GP, you know y my thought always was the

GPs are, you know, the sort of first line of contact.

And if it’s something a GP can treat, then fine, and if

it’s not then pass you on to a specialist and I don’t

think diabetes should be any different to that.

Whilst patients, such as Ryan, had well formulated

views about health service delivery, equal numbers of

patients failed to engage with questions that sought their

opinions of, and preferences for, their current and future

diabetes care. In the vast majority of cases, this lack of

engagement appeared to be because these patients did

not consider themselves to have a health problem, and

thus did not regard themselves as needing comprehen-

sive medical attention:

I: What would you say that you want from diabetes

services? What would you like to see them provide for

people in your position?

Iris: [Pause] I really havenae given that a thought to

be quite honest. As I say well I think I’m getting

adequate service from my doctor [GP]. She is looking

after me and I don’t think there’s much more y’know

unless-unless cos I think well I’m not too bad.

Jennifer: I feel that I’m not that bad y’know that

there’s anything I would need.

Bob: Well I don’t need nothing from them. If you’re

feeling fine you don’t need anything. But then you

know that they’re there if you need them.

Patients’ expectations of diabetes services were not

just symptomatic of their perceived health status. As

Mary’s case study highlights, patients’ preferences for

services often appeared to stem partly, albeit indirectly,

from the types of services they had already received.

Mary, as we have seen, originally wanted to consult an

‘expert’ about her diabetes and to receive more

information and support. However, by the time of her

last interview, she seemed to hold a very indifferent

attitude to her diabetes care, her expectations not

extending beyond having healthcare professionals avail-

able to write out her prescriptions. It would appear,

then, that May’s case study highlights a ‘catch 22’

situation. Whilst the low expectations of diabetes

services Mary expressed in her final interview stemmed

partly from her perception that she did not have a health

problem (and thus did not require health services), a

central reason why she did not consider herself to have a

health problem is because of the inferences and

conclusions she had drawn from the health services she

had actually received.

That disease perceptions and health service delivery

can be mutually informing is also evident in other cases.

Returning to Ryan’s case study (described above), it

could be argued that his continuing expectations of

receiving ‘expert’ attention in hospital were at least

partly fuelled by the disease perceptions nurtured by

having already received care in a hospital diabetes clinic.

Contextual knowing

Mary’s case study reveals one further, interweaving

layer of complexity salient to understanding patients’

perceptions and views. At several points during her

interviews, she alluded to the possibility that she neither

wanted to know about her future disease risks, nor did

she wish to discuss these risks openly with another

person. As one may recall, in both her round 1 and 2

interviews Mary made implicit reference to wanting to

remain ignorant of the complications patients with type

2 diabetes can develop. As such, she may have been

exhibiting what Gordon (1990) has termed ‘contextual

knowing’, a social and psychological strategy whereby

patients (and other people) cultivate and manipulate

uncertainty. Indeed, several patients, such as Mary,

proffered comments which indicated that they were

attempting to downplay the significance of future,

potentially threatening events (i.e. their risks of devel-

oping complications), and/or to dissociate themselves

ARTICLE IN PRESSJ. Lawton et al. / Social Science & Medicine 60 (2005) 1423–1435 1431

from a diabetic (i.e. sick) identity, as a way of generating

and sustaining a viable sense of self in the present.

I: Have you sought out any additional information

about diabetes from anywhere?

Eric.: Erm I think I know enough erm but erm I don’t

feel that y’know at the moment I-I don’t need, er,

don’t want others to talk to me about diabetes. I

think that might suggest that I’m becoming obses-

sional about the damned thing and I-I don’t know if I

want to y if you’re sort of searching out people or-

or organisations that are talking about diabetes all

the time, you sort of become a diabetic person and

erm well you’re somebody else then.

Jennifer: No, I read quite a bit about it y’know on the

leaflets and that. And sometimes I often think there’s

a book that they advertise in all the newspapers and I

think ‘‘I’m going to send away for that’’ but

sometimes I think you can know too much. So I’ve

never done it.

(I: What do you mean like in terms of knowing too

much? Like because it might worry you more?)

Jennifer: Yeah, yes. That’s exactly what I mean.

Arguably, this desire to downplay one’s identity as a

diabetic patient, and one’s risk of diabetic complications

may have fed into some patients’ stated preference for

their care to remain in general practice. In much the

same way as Tod, Read, Lacey, and Abbot (2001) found

that fear-motivated denial acted as a barrier to the

uptake of services for coronary heart disease, some

patients may have been resistant to the idea of hospital-

based diabetes care because, for them, a hospital referral

connoted full entry to being what Mary described as

‘‘really ill’’.

Discussion

In this paper, we have shown that newly diagnosed

type 2 diabetes patients’ disease perceptions are in-

formed by a number of interweaving factors, key

amongst these being the types of health professionals

they encounter (e.g. GPs vs. hospital consultants) and

the settings in which these encounters take place (e.g.

primary vs. secondary healthcare settings).1 In so doing,

we have underlined the importance of a contextually

sensitive approach, one that does not just take account

1As we describe elsewhere (Lawton, Peel, Douglas, & Parry

(2004a); Peel, Parry, Douglas, & Lawton, 2004b), patients’

disease perceptions were also informed by the different types of

glucose self-monitoring equipment they were allocated, and

equipment allocation was largely dictated by the (different)

settings in which patients received their diabetes care.

of broader contours and features of patients’ everyday

lives (including the contexts of patients’ own bodies),

but also situates patients’ experiences and views in the

settings and locations in which they receive their

diabetes care. Thus, like Hart (2001), this paper calls

for reconceptualisation within the medical social

sciences in order to bring health and medical services

back into the picture. However, in making this proposal,

we are not simply suggesting a return to the focus on

doctor–patient interactions beloved in British and

American medical sociology’s early years. On the

contrary, we are calling for a much wider perspective,

one which also takes account of the locations and

settings in which patients receive their health care,

together with the broader economic and policy factors

which inform the nature and content of health service

delivery. By demonstrating the salience of these wider

factors and influences, this paper helps to explain why

patients’ perceptions and understandings of their disease

are not simply a product of the diabetes education they

do or do not receive from healthcare professionals

(Cohen et al., 1994; Snoek, 2002). To put matters

simply, there are many other factors, apart from

education, at play.

Before discussing the implications of the findings, let

us begin with a caveat. This study focused on newly

diagnosed patients, virtually all of whom reported

remaining free of complications throughout the time

they took part. Hence, it has not been possible to look at

the effects of long-term or permanent changes in

patients’ (embodied) disease states on their perceptions

and understandings of their disease. However, other

studies have focused on ‘veteran’ patients and these

suggest that the experience of diabetic complications,

that is, continual bodily reminders of disease presence

(e.g. loss of sight, amputations, etc.), may heighten

patients’ awareness that their diabetes is serious in their

particular case (Murphy & Kinmonth, 1995; Maclean &

Oram, 1988). Thus, these studies can be used to support

our argument that the ‘absent’ diabetic body (Leder,

1990) creates particular challenges to healthcare profes-

sionals, insofar as it may obstruct their efforts to convey

to patients that their disease and its management is

something they need to take very seriously. The findings

also highlight other challenges for those involved in

health service delivery and health service research, and it

is to these that we shall now turn.

Challenges for those involved in health service delivery

Within the UK, general practice-based initiatives are

being launched to screen for type 2 diabetes in ‘high risk’

groups, thereby increasing the identification of those

who have the disease in its sub-clinical phase (Depart-

ment of Health, 2004). Arguably, the introduction of

screening constitutes part of a broader trend within

ARTICLE IN PRESSJ. Lawton et al. / Social Science & Medicine 60 (2005) 1423–14351432

contemporary ‘risk society’ (Beck, 1992) in which

increasing onus is being placed on individuals to take

responsibility for their future health, and the boundaries

between health and illness are becoming evermore

blurred (Armstrong, 1995). Indeed, screening pro-

grammes have been commended for their potential to

improve long-term health outcomes, by giving patients

the opportunity to implement disease risk-management

strategies at an early stage (Department of Health,

2004). However, as our findings suggest, professionals

need to be aware of the challenges of convincing

asymptomatic diabetic patients (these being the patients

most likely to be identified through general practice-

based screening) that they have a potentially life-

threatening disease for which rigorous self-management

is necessary. As has been argued elsewhere (Lawton,

2002), for some people at least, the embodied experience

of ill-health may be a necessary pre-cursor for seeing

oneself as ‘at risk’ for future disease complications.

Screening is not the only issue which raises challenges

for those involved in the delivery of diabetes services. As

described earlier, there is a widely accepted view

amongst healthcare professionals and others that

patients need to be aware that (their) type 2 diabetes is

a potentially serious disease, as this awareness may

facilitate motivation and commitment to adhere to

diabetic regimens (Snoek, 2002). Thus, our finding that

patients may interpret non-referral to hospital as mean-

ing their diabetes cannot be serious requires considera-

tion, given the nationwide restructuring of services

currently taking place in the UK (see above). Whilst

patients may view primary care-based diabetes services

favourably for reasons of convenience and accessibility,

and because they may perceive GPs and practice nurses

as easier to communicate with than hospital consultants

(see Murphy, Kinmonth, & Marteau, 1992), care needs

to be taken to ensure that these benefits are not offset by

patients drawing inappropriate conclusions about their

condition (for recommendations as to how practitioners,

healthcare policy makers and managers could meet the

challenge raised by the relocation of diabetes services to

primary care settings, see Lawton, Parry, Peel, &

Douglas, in press).

Implications for health service research

By demonstrating the overlapping and interweaving

nature of health service delivery and disease perceptions,

our study also draws attention to some of the potential

challenges of using a ‘user perspective’ to inform future

health service delivery. In particular, it can used be

stimulate discussion and debate about whether services

can simply be designed on the basis of what patients say

they want, or if greater heed should be paid to the

factors and influences that may underlie their stated

preferences and views.

In a questionnaire study undertaken with English

patients, Kinmonth, Murphy, and Marteau (1989) found

considerable consumer support for the future develop-

ment of general-practice based review of patients with

type 2 diabetes, an observation echoed by Murphy et al.

(1992) in a follow-up study undertaken after pilot

primary care review had been introduced. Both studies

have been used to provide an endorsement for the

broader restructuring of diabetes services now taking

place in the UK, an endorsement supposedly based on

patients’ own preferences and views. But what does this

consumer support actually mean? And if patients say that

they are satisfied with general practice-based services as

both Kinmonth et al. (1989) and Murphy et al. (1992)

found, can such statements simply be taken at face value?

By employing a different methodology to Kinmonth

and colleagues, our study has revealed an altogether

more complex picture. Returning to Mary’s case study

as an illustration, arguably, albeit hypothetically, had

she simply been administered a questionnaire about her

service preferences at one snapshot in time—say on the

anniversary of her diagnosis—all that it would have

been possible to ascertain is that she was satisfied with

the GP-based services she was currently receiving, she

wanted her care to remain in general practice in the long

term, and ideally for her contact with diabetes services

to be as minimal as possible. Yet, as her case study has

demonstrated, her seeming satisfaction with the services

she was receiving 1 year post-diagnosis was partly a

product of the disease perceptions fuelled by those

services hitherto received. Indeed, as one may recall,

Mary’s initial preference was for ‘expert’ (i.e. hospital)

diabetes care, but this preference shifted after her

original expectations were not met. Mary’s case study

thus adds complexity to the now popular (albeit largely

untested) notion held by policy makers and profes-

sionals that patients’ compliance improves when services

are delivered in ways tailored to their preferences and

views (Towle & Godolphin, 1999). Indeed, if one buys

into the view held by some professionals that patients

may benefit from recognising/accepting that they have a

potentially serious disease as this may improve their

compliance to diabetic regimens (see above), it could be

suggested that their interests may, on occasion, be best

served by providing services that are not necessarily

congruent with what they say they want (for example, by

providing patients, such as Mary, with diabetes care in a

hospital setting or, at the very least, by rethinking the

types of health services and support the she receives in

general practice). However, such a position, whilst

clearly important to contemplate, is somewhat proble-

matic to endorse in practice. This is not only because a

paternalistic stance stands contrary to the contemporary

ethos of empowering patients (Crossley, 1998), but also

because there may be valid and understandable reasons

why patients may have a preference for GP-based

ARTICLE IN PRESSJ. Lawton et al. / Social Science & Medicine 60 (2005) 1423–1435 1433

services. As we have seen, some patients found the

prospect/possibility of developing diabetic complica-

tions extremely upsetting and frightening, and they saw

referral to a hospital clinic as being synonymous with

their health deteriorating. Thus, their preferences for

general practice care were at least partly rooted in an

understandable desire to generate and maintain a sense

of well-being in the present.

Conclusion

As this paper has demonstrated, there are many

challenges involved in undertaking health service and

other policy relevant research, the latter now being a

requirement of most funding bodies in the UK.

Engaging patients in research and taking their views

into account in the planning and delivery of services may

bring a number of logistical and ethical issues to the

fore. Not only may imaginative and innovative meth-

odologies be required to capture adequately a ‘user

perspective’ (Lawton, 2003), we also need to be sensitive

to the complex ways in which patients’ disease percep-

tions and their ensuing preferences for services may be a

product of those services they have already received, as

well as a desire to retain a viable self in the present. In

putting findings such as these into practice, it could be

argued that the greatest challenge with which health

professionals have to contend is to tread successfully the

delicate line between offering patients comfort and

reassurance and conveying to them—through the inter-

ventions and information they provide—that they have

a potentially serious disease.

Acknowledgements

This study was funded by the Chief Scientist Office,

Scottish Executive Health Department. The research

was undertaken in the Research Unit in Health,

Behaviour and Change, which is jointly funded by the

Scottish Executive Health Department and NHS Health

Scotland. The opinions expressed in this paper are those

of the authors, not necessarily those of the funding

bodies. The authors would like to thank the healthcare

professionals who assisted with recruitment and the

patients who took part. Additional thanks goes to

Margaret MacPhee for excellent secretarial support and

to Nina Hallowell and Steve Plat for their constructive

and helpful comments on a draft of this paper.

References

Anderton, J. M., Elfert, J., & Lai, M. (1989). Ideology in the

clinical context: chronic illness, ethnicity and the discourse

on normalization. Sociology of Health and Illness, 11(3),

253–278.

Anderson, R. M., Fitzgerald, J. T., & Oh, M. S. (1993). The

relationship between diabetes-related attitudes and patients

self-reported adherence. Diabetes Education, 19, 287–292.

Armstrong, D. (1995). The rise of surveillance medicine.

Sociology of Health and Illness, 17, 393–404.

Atkin, K., & Ahmad, W. I. U. (2000). Pumping iron:

compliance with chelation therapy among young people

who have thalassaemia major. Sociology of Health and

Illness, 22, 500–524.

Bagust, A., Hopkinson, P. K., Maslove, L., & Currie, C. J.

(2002). The projected healthcare burden of Type 2 diabetes

in the UK from 2000 to 2060. Diabetic Medicine, 19(Suppl.

4), 1–5.

Beck, U. (1992). Risk society: towards a new modernity.

London: Sage.

Blaxter, M. (1983). The cause of disease: women talking. Social

Science and Medicine, 17(2), 59–69.

Boyatzis, R. E. (1998). Transforming qualitative information:

thematic analysis and code development. Thousand Oaks,

CA: Sage.

Britten, N., Jones, R., Murphy, E., & Stacy, R. (1995).

Qualitative research methods in general practice. Family

Practice, 12(1), 104–114.

Bury, M. (1982). Chronic illness as biographical disruption.

Sociology of Health and Illness, 4, 167–182.

Bury, M. (1991). The sociology of chronic illness: a review of

research and prospects. Sociology of Health and Illness, 13,

451–468.

Campbell, R., Pound, P., Pope, C., Britten, N., Pill, R.,

Morgan, M., & Donovan, J. (2003). Evaluating meta-

ethnography: a synthesis of qualitative research in lay

experiences of diabetes and diabetes care. Social Science and

Medicine, 56, 671–684.

Conrad, P. (1990). Qualitative research on chronic illness: a

commentary on method and conceptual development.

Social Science and Medicine, 11, 1257–1263.

Cohen, M. Z., Tripp-Reimer, Smith, C., Sorofman, B., &

Lively, S. (1994). Explanatory models of diabetes: patient-

practitioner variation. Social Science and Medicine, 38(1),

59–66.

Crossley, M. (1998). ‘Sick role’ or ‘empowerment’? The

ambiguities of life with an HIV positive diagnosis. Sociology

of Health and Illness, 20(4), 507–531.

Cunningham-Burley, S., Allbutt, H., Garraway, W. M., Lee, A.

J., & Russell, E. B. (1996). Perceptions of urinary symptoms

and health-care-seeking behaviour amongst men aged 40–79

years. British Journal of General Practice, 46(407), 349–352.

Davison, C., Smith, G. D., & Frankel, S. (1991). Lay

epidemiology and the prevention paradox: the implications

of coronary candidacy for health education. Sociology of

Health and Illness, 13(1), 1–19.

Department of Health (2003). National service framework for

diabetes: delivery strategy. London: HMSO.

Department of Health (2004). Diabetes, Heart Disease and

Stroke (DHDS) Prevention Project, http://www.nelh.nh-

s.uk/screening/diabetesproject/home.htm.

Diabetes UK (2004). www.diabetes.org.uk.

Drummond, N., & Mason, C. (1990). Diabetes in a social

context: just a different way of life in the age of reason. In

ARTICLE IN PRESSJ. Lawton et al. / Social Science & Medicine 60 (2005) 1423–14351434

Cunningham-Burley, S., & McKeganey, N. P. (Eds.),

Readings in medical sociology. London: Tavistock/Routle-

dge.

Emslie, C., Hunt, K., & Watt, G. (2001). Invisible women? The

importance of gender is lay beliefs about heart problems.

Sociology of Health and Illness, 23(20), 203–233.

Foucault, M. (1991). Discipline and punish: the birth of the

prison. London: Penguin Books.

Glaser, B., & Strauss, A. (1967). The discovery of grounded

theory. Chicago: Aldine Pub. Co.

Gordon, D. (1990). Embodying illness, embodying cancer.

Culture, Medicine and Psychiatry, 14, 275–297.

Goyder, E. C., McNally, P. G., Drucquer, M., Spiers, N., &

Botha, J. L. (1998). Shifting of care for diabetes from

secondary to primary care, 1990-5: review of general

practices. British Medical Journal, 316, 1505–1506.

Hart, E. (2001). System induced setbacks in stroke recovery.

Sociology of Health and Illness, 23, 101–123.

Hepworth, J. (1999). Gender and the capacity of women with

NIDDM to implement medical advice. Scandinavian Journal

of Public Health, 27, 260–266.

Hunt, L. M., Jordan, B., & Irwin, S. (1989). View of what’s

wrong: diagnosis and patients’ concepts of illness. Social

Science and Medicine, 28(9), 945–956.

Kelleher, D. (1988). Coming to terms with diabetes: coping

strategies and non-compliance. In Anderson, R., & Bury,

M. (Eds.), Living with chronic illness: the experiences of

patients and their families. London: Unwin Hyman.

Kinmonth, A. L., Murphy, E., & Marteau, T. (1989). Diabetes

and its care—what do patients expect? Journal of the Royal

College of General Practitioners, 39, 324–327.

Lawrence, A., & Cheely, J. (1980). Deterioration in diabetes

patients’ knowledge and management skills as determined

during outpatient visits. Diabetes Care, 3, 214–218.

Lawton, J. (2002). Colonising the future: temporal perceptions

and health-relevant behaviours across the adult lifecourse.

Sociology of Health and Illness, 24, 714–733.

Lawton, J. (2003). Lay experiences of health and illness: past

research and future agendas. Sociology of Health and Illness,

25(Special Issue SI 2003), 23–40.

Lawton, J., Peel, E., Douglas, M., & Parry, O. (2004a). ‘Urine

testing is a waste of time’: newly diagnosed type 2 diabetes

patients’ perceptions of self-monitoring. Diabetic Medicine,

21, 1045–1048.

Lawton, J., Parry O., Peel, E., & Douglas, M. (in press).

Diabetes service provision: a qualitative study of newly

diagnosed Type 2 diabetes patients’ preferences and views.

Diabetic Medicine.

Leder, D. (1990). The absent body. Chicago: Aldine.

Linn, M. W., Linn, B. S., & Stein, S. R. (1982). Beliefs about

the causes of cancer in cancer patients. Social Science and

Medicine, 16, 835–839.

Maclean, H. M., & Goldman, J. B. (2000). A decade of

qualitative research in diabetes: a review and synthesis.

Canadian Journal of Diabetes Care, 24(2), 54–63.

Maclean, H., & Oram, B. (1988). Living with diabetes. Toronto,

Ont.: University of Toronto Press.

Mathieson, C. M. (1999). Interviewing the ill and the healthy:

paradigm or process? In Murray, M., & Chamberlain, K.

(Eds.), Qualitative health psychology: theories & methods

(pp. 117–132). London: Sage.

Morris, A. D., Boyle, D. I., MacAlpine, R., Emslie-Smith, A.,

Jung, R. T., Newton, R. W., et al. (1997). The diabetes audit

and research in Tayside Scotland (DARTS) study: electro-

nic record linkage to create a diabetes register. DARTS/

MEMO Collaboration. British Medical Journal, 315,

524–528.

Murphy, E., & Kinmonth, A. L. (1995). No symptoms, no

problem? Patients’ understandings of non-insulin dependent

diabetes. Family Practice, 12, 184–192.

Murphy, E., Kinmonth, A. L., & Marteau, T. (1992). General

practice based diabetes surveillance: the views of patients.

British Journal of General Practice, 43, 279–283.

O’Connor, P. J., Crabtree, B. F., & Yanoshik, K. (1997).

Differences between diabetic patients who do and no not

respond to a diabetes care intervention: a qualitative

analysis. Family Medicine, 29, 424–428.

Parsons, T. (1951). The social system. Chicago: Free Press.

Peel, E., Parry, O., Douglas, M., & Lawton, J. (2004a).

Diagnosis of type 2 diabetes: a qualitative analysis of

patients’ emotional reactions about information provision.

Patient Education and Counseling, 53, 269–275.

Peel, E., Parry, O., Douglas, M., & Lawton, J. (2004b). Blood

glucose monitoring in non-insulin treated type 2 diabetes:

qualitative study of patients’ perspectives. British Journal of

General Practice, 54, 183–188.

Pinder, R. (1995). Bringing back the body without blame.

Sociology of Health and Illness, 17, 605–631.

Pound, P., Gompertz, P., & Ebrahim, S. (1998). Illness in the

context of older age: the case of stroke. Sociology of Health

and Illness, 20, 489–506.

Radley, A. (1989). Style, discourse and constraint in adjustment

to chronic illness. Sociology of Health and Illness, 3,

230–252.

Rier, D. A. (2000). The missing voice of the critically ill: a

medical sociologist’s first-person account. Sociology of

Health and Illness, 22, 68–93.

Scambler, G., & Hopkins, A. (1987). Being epileptic: coming to

terms with stigma. Sociology of Health and Illness, 8,

26–43.

Schoenberg, N. E., Amey, C. H., & Coward, R. T. (1998).

Stories of meaning: lay perspectives on the origin and

management of noninsulin dependent diabetes mellitus

among older women in the United States. Social Science

and Medicine, 47, 2113–2125.

Snoek, F. J. (2002). Breaking the barriers to optimal glyceamic

control—what physicians needs to know from patients’

perspectives. International Journal of Clinical Practice,

129(Suppl.), 80–84.

Sullivan, E. S., & Joseph, D. H. (1998). Struggling with

behaviour changes: a special case for clients with diabetes.

Diabetes Education, 21, 533–540.

Thompson, S. J., & Gifford, S. M. (2000). Trying to keep a

balance: the meaning of health and diabetes in an urban

aboriginal community. Social Science and Medicine, 51,

1457–1472.

Tod, A. M., Read, C., Lacey, A., & Abbot, J. (2001). Barriers

to uptake of services for coronary heart disease: qualitative

study. British Medical Journal, 323, 1–6.

Towle, A., & Godolphin, W. (1999). Framework for teaching

and learning informed shared decision making. British

Medical Journal, 319, 766–771.

ARTICLE IN PRESSJ. Lawton et al. / Social Science & Medicine 60 (2005) 1423–1435 1435

UKPDS (UK Prospective Diabetes Study Group) (1998).

Intensive blood-glucose control with sulphonylureas or

insulin compared with conventional treatment and risk of

complications in patients with type 2 diabetes (UKPDS 33).

The Lancet, 352, 837–853.

van den Arend, I. J. M., Stolk, R. P., Krans, H. M. J., Grobbee,

D. E., & Schrijvers, A. J. P. (2000). Management of type 2

diabetes: a challenge for patient and physician. Patient

Education and Counseling, 40, 187–194.

Van Gennep, A. (1972). The rites of passage. Chicago:

University of Chicago Press.

Williams, G. (1984). The genesis of chronic illness: narrative

reconstruction. Sociology of Health and Illness, 6,

175–200.