Research Reading Literature

O R I G I N A L R E S E A R C H

Lived experience of diabetes among older, rural people

Sharon R. George & Sandra P. Thomas

Accepted for publication 16 January 2010

Correspondence to S.R. George:

e-mail: [email protected]

Sharon R. George PhD RN CNL

Assistant Professor, Graduate Faculty

College of Nursing, The University of

Alabama in Huntsville, USA

Sandra P. Thomas PhD RN FAAN

Coordinator for Doctoral Program,

and Co-Director

Cooperating Site, International Institute for

Qualitative Methodology, The University of

Tennessee, USA

G E O R G E S . R . & T H O M A S S . P . ( 2 0 1 0 )G E O R G E S . R . & T H O M A S S . P . ( 2 0 1 0 ) Lived experience of diabetes among older,

rural people. Journal of Advanced Nursing 66(5), 1092–1100.

doi: 10.1111/j.1365-2648.2010.05278.x

Abstract Title. Lived experience of diabetes among older, rural people.

Aim. This paper is a report of a study conducted to elucidate experiences and

perceptions of self-management of diabetes as narrated by older people diagnosed

with insulin-dependent diabetes living in a rural area.

Background. Older people worldwide are disproportionately affected by diabetes

and are more likely to have co-morbidities and disabilities. Guidelines for

management, developed by the American Diabetes Association, are not targeted for

this population. A plethora of quantitative research has investigated self-manage-

ment issues, with little change to outcomes. This pleads for consideration of a new

diabetes education model, which includes consideration of experiences within

clients’ worldviews.

Method. Unstructured interviews starting with an open question were conducted

from a purposive sample in 2005. Interviews were transcribed and analysed

according to the tenets of existential phenomenology, a process which began with

bracketing the researcher’s biases.

Findings. Living with poorly controlled diabetes led participants to introspection

and existential questioning. Four connected themes were identified: ‘Your Body Will

Let You Know’; ‘I Thought I Was Fine, But I Wasn’t’; ‘The Only Way Out is to Die’;

and ‘You Just Go On’.

Conclusion. Currently designed from a medical perspective, diabetes education

should be based on a nursing model incorporating the client’s insights and experi-

ences. When managing diabetes is viewed from a client’s perspective, the focus

becomes solving problems that arise in self-regulation of one’s own regimen rather

than in complying with doctor’s orders. Nurses need to reframe the problem by

excluding the compliance/noncompliance model and developing a conceptual

perspective on self-management that is grounded in world and body.

Keywords: diabetes, gerontology, nursing, older people, phenomenology, rural

health, self-management

1092 ! 2010 The Authors. Journal compilation ! 2010 Blackwell Publishing Ltd

J A N JOURNAL OF ADVANCED NURSING

Introduction

Every 10 seconds, two people develop diabetes and someone

dies from diabetes-related causes. It is the fourth leading

cause of death globally (International Diabetes Federation,

2007). The world is in the midst of an epidemic of diabetes,

which if unchecked will produce an unbearable burden on

quality of life and the worldwide healthcare system over the

next generation. The World Health Organization (WHO)

estimates that more than 180 million people worldwide

currently have diabetes and this number may double by 2030.

India, China and the United States of America (USA) are the

top three countries with the most people with diabetes (WHO

2008). In the USA, over 23 million people are currently

diagnosed with diabetes (American Diabetes Association

2009a, 2009b), and it is the sixth leading cause of death in

the USA, being responsible for 225,000 deaths annually

(Gambert & Pinkstaff 2006). Over 90% of older adults with

type 2 diabetes are diagnosed with either insulin resistance or

insulin deficiency, which is a conundrum for optimal treat-

ment options (DeFronzo 2004). In a meta-analysis conducted

by researchers from Sweden, Zimbabwe and Uganda, under-

lying causes for the pandemic of diabetes were attributed to

genetic and environmental factors, longevity, changes from

active to sedentary lifestyles, and over-eating. The researchers

stated that this illness is a growing public health problem

(Hjelm et al. 2003). The prevalence of diabetes is somewhat

higher in rural than in urban areas, but racial/ethnic,

socioeconomic and lifestyle factors also appear to be strong

risk factors. Rural people with diabetes tend to be diagnosed

later and receive substandard health care compared to their

urban counterparts (Dabney & Gosschalk 2009).

Background

Guidelines for diabetes management developed by the

American Diabetes Association are not specific for the older

diabetic population, only the general adult population. There

are no diabetes treatment differences targeted for patients

who are 65 years of age and older. The American Diabetes

Association in its 2009 revisions addressed new standards.

Explicit in the revisions were inclusion of children, teenagers

and younger adults. Specific recommendations were also

made for people over 40 years of age (ADA 2009a, 2009b),

but unique physiological changes in people aged 65 years and

older were not taken into account. For example, the number

of insulin receptors on cell membranes decreases with age;

accordingly, glucose intolerance increases. There is age-

related change to tissue sensitivity to insulin, and alteration

of insulin receptor sites by the ageing process is thought to

render insulin less effective. Secretion of insulin may be

depressed and the target tissue may have an increased

resistance to insulin. Non-ketotic hyperosmolar coma is a

condition exclusive to older people with diabetes and is

characterized by extreme hyperglycaemia and hyperosmolar-

ity. People with these symptoms exhibit mental status

changes, dehydration and hypotension. This is often viewed

as a neurological event rather than a complication of

diabetes. These changes reflect a disturbing picture of self-

management burdens for older adults and the need for

individualized goal setting as opposed to a prescribed

protocol to fit everyone. According to the study by Selvin

et al. (2006), the higher rate of poor glycemic control in the

older population as compared to middle aged people with

diabetes represents differing burdens of the disease and need

for diverse treatments in each group.

Recently, the American Association of Diabetes Educa-

tors and American Geriatric Society formulated guidelines

for self-management education in older people; however,

the guidelines were based on expert consensus and await

empirical evaluation (Suhl & Bonsignore 2006). The

American Diabetes Association, American Association of

Diabetes Educators and American Association of Clinical

Endocrinologists acknowledge that no long-term studies

have been conducted among older adults with diabetes

(Hainer 2006). Older people with diabetes have not been

included in many studies, which may explain why a specific

protocol for management has not been developed. It is

crucial for our global, older population to be integrated

into studies of diabetes. This will permit development of

specific guidelines for self-management to ameliorate con-

ditions such as co-morbidities and disabilities that can be

prevented by early intervention rather than episodic man-

agement. Advanced healthcare planning may delay onset of

complications, decrease hospitalizations and improve out-

comes.

Individuals with diabetes carry out about 95% of their

own care (Anderson et al. 1995, Funnell et al. 2008), and

diabetes education is used as a tool for the development of

effective self-management practices. Diabetes self-manage-

ment is defined by the American Diabetes Association as the

ongoing process of facilitating the knowledge, skill and

ability for diabetes self-care (Anderson & Funnell 2000,

Funnell et al. 2008). People with diabetes make many choices

every day that affect their disease. The focus of diabetic

education has been to provide information that will improve

patient choices, promote better health and reduce complica-

tions. Educating the patient is essential in diabetes self-

management, and it is considered a crucial factor in achieving

optimal blood glucose levels (Gorawara-Bhat et al. 2008).

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! 2010 The Authors. Journal compilation ! 2010 Blackwell Publishing Ltd 1093

Diabetes education is usually carried out using a pedagog-

ical approach which includes lecture content, knowledge

tested for accuracy and demonstration-return demonstration

of the necessary skills for self-management (Brown 1992,

Bradley 1995). This strategy does not necessarily lead to

long-term adherence to diabetes regimens. It is presumed by

healthcare providers that if people are given adequate

education, they will self-manage their disease.

An older individual, however, has accrued years of

established patterns and behaviours, making adherence to,

or change in, a diabetic protocol very difficult and challenging.

There are several unique problems in the management of

65-year and older persons with diabetes. Visual disturbances

occur as a result of the normal ageing process, which in this

group are further exacerbated by poor glucose control. A

decrease in activities of daily living results in decreased food

intake, which may in turn contribute to a hypoglycemic state.

If older people are physically inactive, they are more disposed

to obesity. Adding to this conundrum, it is expected that

many will become cognitively impaired, which may further

decrease adherence to diabetes self-management. Although

effective medications, methods of delivery and methods for

self-monitoring have improved diabetic clients’ ability to

control hyperglycaemia, normal metabolic control remains

difficult to achieve.

Jack et al. (1999) determined that diabetic education has

not taken account of the impact of patients’ social circum-

stances and environmental contexts. The isolation inherent in

rural environments of older people with diabetes may be

particularly challenging. A few researchers have studied rural

and homebound populations but were not exclusively

concerned with older diabetic participants. Adults living in

rural areas often find it difficult to obtain adequate health

care due to such factors as inability to drive, financial

constraints, mistrust, illiteracy, or communication problems

(IOM 2004). Rural women are known to have a greater risk

of death from diabetes (U.S. Rural Assistance Center 2005).

African Americans living in rural areas with high rates of

poverty may not even be able to afford to purchase the

prescribed medications. Studies indicate that this information

is rarely discussed with their physicians (Saver et al. 2004).

The study

Aim

The aim of the study was to elucidate experiences and

perceptions of self-management of their diabetes as narrated

by older people with insulin-dependent diabetes living in a

rural area.

Methodology

The study methodology was influenced by the phenomenol-

ogy of French philosopher Maurice Merleau-Ponty which

‘tries to give direct description of our experience as it is,

without taking account of its psychological origin and the

causal explanations which the scientist, this historian, or the

sociologist may be able to provide’ (Merleau-Ponty 1945/

1962, p. vii). According to Thomas and Pollio (2002, p. 13),

‘The aim of Merleau-Ponty’s phenomenology is to describe

the human experience on its own terms’. Based on these

assumptions, phenomenology was the method of choice for

capturing the experience of older people with diabetes.

Merleau-Ponty, heavily influenced by the work of Husserl

and Heidegger, focused his work on perceptions of lived

experience. In order to describe a lived experience, it must

first be disclosed. Bracketing and phenomenological reduc-

tion are essential components of the methodology (Merleau-

Ponty1945/1962). Bracketing presumes that researchers are

capable of separating their knowledge from personal expe-

rience, at least temporarily, while collecting and analysing

data. The procedure, as defined by Thomas and Pollio (2002),

requires a bracketing interview of the principal investigator.

This is designed to heighten awareness of any preconceptions

or biases arising from personal experiences and minimizes the

potential for distortion of during data collection and analysis.

The principal investigator (SG) reflected upon, and thema-

tized the transcript of her bracketing interview prior to

commencing participant interviews.

Participants

A purposive sample was drawn from local agencies on ageing

between January and May 2005, and consisted of English-

speaking people aged 65–85 years who were able and willing

to talk at length about their diabetes, and to allow a researcher

to visit them in their homes. Among the group were eight

African American and two White women, all confined to their

homes and living in a rural area. Everyone received Social

Security as their only source of income. Length of time with

diabetes ranged from 7 to 39 years. Five participants had been

diagnosed over 25 years previously, and five were diagnosed

less than 12 years previously. All had visible evidence of

diabetes-related complications, and all had more than one

chronic condition in addition to diabetes. All but one was a widow.

Data collection

All interviews were conducted face-to-face in the partici-

pants’ homes, at a date and time of their choosing. No

S.R. George and S.P. Thomas

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specific directions were supplied to participants. They were

free to discuss any life experience they perceived as repre-

senting their diabetes, and their experiences with diabetes

self-management issues. Each participant was told that they

could take as long as they needed to talk about their diabetes.

Interviews lasted from 1 to 2 hours and began with the

prompt: ‘Please tell me what it is like for you living with

diabetes’. From this point, participants could discuss the topic

in any way they chose, and all started with an account of how

terrible diabetes is to them. Comments and questions were

followed-up with prompts such as ‘Tell me more about that’

and ‘Tell me what that is like’. Following the interviews, a

short survey was used to assess issues of self-management,

such as frequency of testing blood glucose levels.

Ethical considerations

This study was approved by the appropriate research ethics

committee. Initial contact with the participants was accom-

plished through a visit from the agency’s home health nurse.

The nurse gave potential participants the following informa-

tion: purpose of the study, nature of the data to be collected,

approximate time required, benefits and risks related to

participation in the study. Informed consent was obtained

from each participant at the time of the interview.

Data analysis

All interviews were audiotaped and transcribed verbatim.

All transcripts were read and re-read while listening to the

audiotape. This was done to ensure accuracy of the

transcription. The transcripts were then read and re-read

again to gain insight and a sense of the lived experience as

described by the participants. To determine emerging

themes, the data from selected transcripts was reviewed

and read aloud by members of an interpretive, interdisci-

plinary, phenomenology research group. Group members

have extensive experience using the Thomas and Pollio

(2002) method of analysing phenomenological research

data, and many have participated in the group for more

than a decade. The group comprises phenomenological

research students from a doctoral programme and doctor-

ally prepared university staff member. Thomas and Pollio’s

(2002) interpretation procedures were used for data anal-

ysis. Existential-phenomenological interpretation is a

process of relating parts (known as meaning units) to the

whole narrative. Analysis is a constant process of seeking to

grasp the meaning of the whole while also scrutinizing

words and phrases line by line. Meaning units and themes

(patterns observed across interviews) were identified and

related to one another until a final thematic structure was

delineated and presented to the research group.

Rigour

The analysis procedure provided an analysis of the data that

was systematic, disciplined, and reflective, and afforded the

opportunity for meaningful comparisons across all the data.

In addition to presenting the formalized thematic structure to

the research group, Thomas and Pollio (2002) recommend

that it be presented to participants for their response to its

validity. The principal investigator revisited two participants

and asked them if the thematic structure was accurate. Both

were able to recognize their own experiences in the findings.

One participant added, ‘This is really good’. The second

participant expressed being amazed at the themes and stated,

‘You really knew what I meant’.

Findings

Survey results

The short survey, administered following the interviews,

revealed erratic diabetes self-management. When asked how

often they self-tested for blood glucose, participants indicated

haphazard testing. One did not check because the glucometer

was broken. Another admitted that she did not check at all.

Four participants reported checking from 3 to 5 times a week,

and four reported checking from 1 to 2 times a day. When

asked if they knew whether they had ever had an HgbA1C

(glycosylated haemoglobin), everyone responded, ‘Don’t

know’.

When questioned about eating habits, such as eating

differently since their diagnosis of diabetes, nine responded

that they had made changes; one said ‘No’. All participants

reported eating at least once per day, but no one ate

according to their healthcare provider’s recommendations

or recommendations of the American Diabetes Association.

When asked if they had received any special teaching about

diabetes, responses varied. For example, one participant had

learned from her doctor and from the television. Other

responses included family and friends, self-teaching, and

obtaining diabetes knowledge through experience and obser-

vation with other diabetic family members.

Interview findings

All participants described what their life was like with

diabetes and how they managed in their own way. Each

spoke in a quiet tone and discussed experiences with sombre

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affect. There was little laughter during the interviews, and

descriptions of specific events seemed to bring back to

immediate consciousness the reality that they had a serious

and intrusive disease, for which there is no known cure. Each

person seemed pleased to have the opportunity to talk about

diabetes without any restrictions on scope or time. Voices

would often trail off at the end of describing an experience, as

though this had left them with lingering thoughts or questions

about their long experience with diabetes. Past experiences

were recounted as though still fresh in the memory. Expres-

sions would change as painful experiences such first using a

needle were described. Pain was reflected in facial grimaces,

and from time to time a melancholy appearance and sadness

permeated the discussion.

Figural themes

In existential phenomenology, predominant aspects of

participant perceptions (termed ‘figural’) must be under-

stood within their environmental context (termed ‘ground’).

Using participants’ own words, specific themes emerging

from this research will be discussed. Four figural themes

were identified across the interviews and were contextuali-

zed by the existential grounds of World and Body. The

world of an older, homebound diabetic in a rural south-

eastern environment is greatly restricted. Few people

populate this small world. Most participants had few

visitors and left their homes infrequently, perhaps to go

church or a family gathering when someone provided

transport.

Theme 1. ‘Your body will let you know: If you miss it you’ll

wind up in a coma’

This poignant comment described how diabetes was experi-

enced as a bodily phenomenon, most notably when the body

signalled that they that must take action. Participants’ nar-

ratives were dominated by frightening episodes of hypo-

glycaemia. ‘Awful’ changes in their body mandated action,

lest adverse consequences ensued. Participants vividly

described feelings in their bodies as an antecedent to hypo-

glycaemia. The bodily cues included ‘started floating’,

‘swimmy headed’, ‘knees like jelly’ and ‘slipping away’. One

person said, ‘You feel like you’re gonna die’. This was

participants’ biggest fear.

Frantic attempts to find something to eat occurred. One

participant said that it was important to be physically close to

the refrigerator so that she did not have far to go when she

became hypoglycemic. Her descriptions of experiences with

hypoglycaemia indicated how she coped. Gesturing, she

declared, ‘There is my bed and there is the refrigerator. I

know when it [blood sugar] has got low, I have to make it to

the freezer, and back in the bed before I black out’.

Experiences of hypoglycaemia generated fear of sleep. Not

responding to bodily cues about hypoglycaemia could cause a

coma. One participant stated, ‘I’m afraid I would have just

slept, slept, slept, if they hadn’t found me’. What stood out

most for people was dread of falling asleep and not being

found. They worried they would not be able to wake up;

being alone intensified this apprehension: ‘I’m afraid I won’t

wake up’. Driven by fear of falling asleep at night, creative

ways were adopted to stay awake as much as possible during

the night. One participant said she consumed ‘coffee all day

and evening to stay awake’.

Participants asserted that conventional diabetes manage-

ment techniques did not work for them. They perceived

healthcare providers as being unwilling to listen, and as

directing them to adopt a regimen they could not follow. This

created frustration and mistrust. Descriptors of provider

responses included ‘Didn’t believe me’, ‘Wouldn’t listen’,

‘Tried to tell them’. Their self-prescribing diabetes manage-

ment ultimately led to accelerating progression of the disease,

leaving them to wonder what went wrong: ‘I did everything I

was supposed to’.

Theme 2: ‘I thought I was fine, but I wasn’t’

The disconnection between participants and providers is

captured in Theme 2. Participants had unwittingly chosen

high-risk behaviours that had worked for many years.

However, as the disease progressed they developed irrevers-

ible, disabling, diabetic complications. They thought that

they would be fine with diabetes if they took their insulin and

ate ‘right’. They believed ‘doing the right thing’ would keep

their diabetes under control. For most, their sense of ‘fine’

was demonstrated by self-management behaviours and

strategies that gave them the greatest degree of freedom

without causing adverse consequences. One person

explained, ‘Sometimes I cut my shot in half’. She made this

decision because taking the entire amount of insulin would

require eating more food, which she mistakenly believed

would have an undesirable outcome: ‘Too much eating, I’d

gain weight’. Participants struggled between what the doctor

advised and their personal knowledge and experience. Most

felt compelled to devise their own diabetes regimen without

the advice of a healthcare provider.

Theme 3: ‘Only way out is to die’

Participants knew that diabetes is a lifelong process and a

disease for which there is no known cure. They perceived that

diabetes had taken over and dictated how they were to live

each day for the remainder of their lives. Neither traditional

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medicine nor their own experience gave them any hope for

significant improvement in their condition; in fact, quite the

contrary, most were faced with escalating degradation in the

quality of their lives and the condition of their diabetes. They

believed that ‘The only way out is to die out’. They are aware

and realistic about the prognosis and were sombre in their

acceptance of their condition. Illustrative quotes included

‘They say they don’t have no cure for it’, and ‘You never will

get well’.

Theme 4: ‘You just go on’

‘You just go on’ reflected the stoic endurance exhibited by

these older diabetic participants, resigned to management of

a disease which they perceived would ultimately claim their

lives. One person, a diabetic for 35 years and facing another

amputation, stated, ‘You just go and do what you got to do’.

Participants had spent a lifetime managing diabetes to the

best of their ability. In essence, they believed that they were

doing everything they knew to keep their lives going with

diabetes. They did not expect to get better and reconciled

themselves to the limitations produced by the disease. This

was reflected in expressions such as ‘I’ve been a diabetic for

so long, you gets used to it. In other words, you have to do it

so long, and you just do, I says, doing what come naturally’.

Part of ‘Just going on’ was sometimes to defy what people

told them because, after all, they already knew that the ‘only

way out is to die’. For example, one participant stated, ‘I love

chocolate and they don’t know where chocolate goes in my

sugar. It doesn’t run my sugar up. I can eat all I want’.

Another confessed, ‘I love sweets; I’d make a cake every

weekend and eat it up all through the week. My sugar’d be

over 600’.

Thematic structure

The thematic structure is illustrated in Figure 1. The structure

represents the interrelationship between all four themes as

never ending. It shows ‘You just go on’ at the top of the

structure because that is where participants can begin or end

their diabetes experiences. Going on represents the resigna-

tion described as a result of living with frightening hypo-

glycaemia episodes, expressed in ‘Your body will let you

know, if you miss it, you’ll wind up in a coma’. Across from

this theme are participants’ perceptions of ‘I thought I was

fine, but I wasn’t’. From the sequence of life events, they

arrived at the conclusion, the ‘Only way out is to die’, which

is illustrated as linked to the first two. If their only way out is

to die, then ‘You just go on’, which is inextricably connected

to the other three themes.

Discussion

Study limitations

Although the small sample size may be viewed as a limitation,

in a phenomenological study it is common for samples to be

small: ‘An appropriate sample size for phenomenological

research can range from 6 to 12 persons’ (Morse 1994, p. 220).

The goal is depth of understanding of the phenomenon;

saturation or redundancy is achieved when no new thematic

material is heard in the interviews. Generalizability of the

study is limited by the environmental location (rural, southern

USA), absence of men and absence of other minority groups

such as Hispanic Americans, Asian Americans and Native

Americans, who have a high prevalence of diabetes. However,

the descriptions provided by this predominantly African

American rural sample are a valuable contribution to litera-

ture: their voices have not been heard. Moreover, transfer-

ability of phenomenological findings largely depends upon the

reader of the research report; a clinician can apply findings of a

phenomenological study when they are judged applicable to

patients expressing similar concerns (e.g. isolation, chronic

illness, fear of dying alone). Fear of dying alone, for example,

is undoubtedly a universal theme among human beings.

Self-management by older people with diabetes

What is new in this study is the first-person perspective of

self-management provided by the narratives of older persons

with diabetes. This allows nurses to step into the world of

rural older individuals with diabetes and understand the

fright of hypoglycaemia, bewilderment when well-inten-

tioned self-care did not have the intended results, frustration

with healthcare providers who do not listen, and stoic

endurance while waiting for death. Tragically, many of the

You just go on

Only way out is to die

Your body will let you know, if you miss it, you’ll wind up in a coma

I thought I was fine, but I wasn’t

Figure 1 Themes of the experience of older rural adults living with diabetes.

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participants had misunderstandings that had never been

dispelled (e.g. eating chocolate will not affect blood sugar).

They believed that they were doing their best to coexist with

the debilitating disease that had caused their bodies to

decline. Similarly, ‘Doing My Best’ was thematic in a recent

study of another vulnerable group: patients having both

schizophrenia and diabetes (El-Mallakh 2007). As in the

present study, limited education, income, and other barriers

constrained participants’ ability to care for themselves. These

barriers affect millions of people with diabetes.

The sombre effect of the women in our study matches that

of diabetics in a study by Moskowitz et al. (2008). They

assessed affect as a risk predictor for diabetes mortality in

715 participants with diabetes and 2,673 participants with-

out chronic illness. Those with diabetes reported lower

Positive Affect subscale scores and higher Negative Affect.

Those with diabetes had a statistically significant higher risk

of mortality.

Research by Brody et al. (2008) has shown that self-

management is compromised when individuals live alone in a

rural setting with lack of family, friends, community, and

neighbours who could provide emotional or physical support.

In this structural equation modelling study of older African

American adults with type 2 diabetes, better social support

was positively related to improved self-management of the

disease. The rural women in the present study did not have

access to social support. They were seemingly doomed, based

on location, fearing that they would die alone in the night.

The self-reliance and stoicism shown by these older women

was typical of rural women interviewed about health

information seeking by Wathen and Harris (2007). Regard-

less of age, the mantra of these women was ‘I try to take care

of it myself’. Self-reliance is perhaps the only available option

for people with diabetes when the disease management

regimens prescribed by healthcare providers fail to prevent

the recurrence of terrifying hypoglycemic episodes. Only their

own bodies seemed to be reliable indicators of needed self-

care actions. Dissatisfying relationships with healthcare

providers were also prominent in a grounded theory study

with insulin-dependent diabetics conducted by Zoffman and

Kirkevold (2007); many people in that study expressed

frustration when providers did not listen to them, and they

engaged in resistance to the ‘orders’ they received. Similar

resistance, traditionally labelled ‘noncompliance’, was

displayed by the older participants in our study.

Findings from this study suggest that healthcare profes-

sionals need to listen more carefully to the voices of clients.

Misunderstandings of the disease and the desired treatment

regimen abounded. Experiences related by participants in

this study did not reflect ‘noncompliance’ in their own

views. Each described how they managed diabetes, knowing

that their self-management regimen was not considered

appropriate according the instructions of their healthcare

providers. It was self-management within their own world-

views.

Conclusion

The international community of nurses has been educating

people about diabetes using guidelines designed from a

medical perspective. Diabetes self-management education

should be based on a nursing model incorporating cli-

What is already known about this topic

• Older people diagnosed with diabetes have more co-morbidities and complications, but guidelines for

self-management are not targeted for clients who are

65 years and older and have concomitant ageing

impairments such as visual changes and decreased

mobility.

• The majority of people with diabetes manage their own care based on what they were taught from a pedagog-

ical approach, based on a presumption by healthcare

providers that if people are provided adequate educa-

tion, they will successfully self-manage their disease.

• An older individual has accrued years of established patterns and behaviours, making adherence to or

change in a diabetic protocol very difficult and chal-

lenging.

What this paper adds

• Living with poorly controlled diabetes led participants to introspection and existential questioning.

• Four connected themes were identified: ‘Your Body Will Let You Know’; ‘I Thought I Was Fine, But I Wasn’t’;

‘The Only Way Out is to Die’; and ‘You Just Go On’.

Implications for practice and/or policy

• Improved education is needed, based on the Interna- tional Diabetes Federation model adapted to the older

population and specifically individualized to clients’

experiences and patterns.

• Nursing care should be provided with understanding and sensitivity toward cultural values.

• An approach to diabetes is needed that is grounded in understanding of clients’ contextual world and experi-

ence of their own body.

S.R. George and S.P. Thomas

1098 ! 2010 The Authors. Journal compilation ! 2010 Blackwell Publishing Ltd

ents’ insights and experiences. Nurses should consider a

client’s pattern if any adaptations or modifications are

required, rather than continuing to force diabetes care

into an intellectual, financial and psychological system that

will continue to frustrate clients and providers and may

not improve blood glucose levels, complications, or escalat-

ing costs associated with diabetes. When managing diabetes

is viewed from a participant perspective, the focus becomes

solving the problems that arise in self-regulation of the

person’s own regimen rather than complying with (or not

complying with) a doctor’s orders. Noone had worked

collaboratively with the participants in this study to reduce

the frequency of the hypoglycaemia that was the figural

problem in their day-to-day existence. Perhaps participants

did not realize that hypoglycemic episodes could be reduced

with better control of their disease.

Our findings challenge the traditional compliance paradigm

in which current diabetes education is grounded. Healthcare

providers need to develop a new approach to diabetes

education for older adults that is grounded in understanding

of clients’ contextual World and experience of their own Body.

Homebound clients need to be heard in order for healthcare

providers to become creative with addressing their diabetes

concerns. Reframing the problem of noncompliance may offer

a new view for developing nursing interventions that could

make a difference by improving the quality of life for this

population. What is needed, based on this study, is an

innovative approach to self-management with potential for

global applications. The International Diabetes Federation,

Section on Diabetes Education, has developed an International

Curriculum for Diabetes Health Professionals (International

Diabetes Federation 2009). The document was developed to

assist healthcare providers in preparing a high quality diabetes

education programme that can be used throughout the world.

It includes planning timely nursing care, with evaluation of

clients’ environments and experiences; furthermore, it empha-

sizes that diabetes education should be individualized and

negotiated in partnership between nurse and client. If client

views and beliefs are not taken into account, only short-lived

changes in self-management may result. Adoption of the

International Diabetes Federation model, with consideration

of unique client experiences with self-management such as

those described in this study, will promote a collaborative

relationship. The voices of our participants call us to act, so

that they do not spend their older years merely waiting to die.

Funding

This research was partially funded by grants from Sigma

Theta Tau International Honor Society of Nursing, Beta Phi,

and Gamma Chi Chapters. This research received no specific

grant from any funding agency in the public, commercial, or

not-for-profit sectors.

Conflict of interest

No conflict of interest has been declared by the authors.

Author contributions

SG was responsible for the study conception and design. SG

performed the data collection. SG performed the data

analysis. SG and ST were responsible for the drafting of the

manuscript. SG and ST made critical revisions to the paper

for important intellectual content. SG obtained funding. SG

provided administrative, technical or material support. ST

supervised the study.

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