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The distress experienced by people with type 2 diabetes

Article  in  British journal of community nursing · January 2003

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 RESEARCH STUDY

The distress
experienced by people
with type 2 diabetes
Christina West, Joan McDowell
iabetes mellitus is a chronic condition disorders and disease aetiologies. The prevalence of

D
Christina West is
Diabetes Liaison Nurse, affecting the metabolism of glucose as a diabetes in the UK has traditionally been estimated
Lomond and Argyll
Primary Care NHS
result of under production of or resistance at 2% or more of the population, with undiagnosed
Trust, Mid-Argyll to insulin. It is recognized as a major worldwide diabetes accounting for a further 2% (Mackinnon,
Hospital, Lochgilphead public health problem. At present about 100 million 1995). There is a higher incidence among ethnic
and Joan McDowell is
Senior Lecturer, Nursing
people worldwide have diabetes and it is estimated groups who have migrated to the UK, e.g. South
& Midwifery School, that by the year 2010 this will have increased to Asians, as a result of a combination of genetic pre-
University of Glasgow, over 220 million (Amos et al, 1997). disposition to diabetes and changes in diet and
Scotland
There are several types of diabetes. Type 1 dia- lifestyle. Ageing is associated with a deterioration
betes is characterized by a lack of production of in blood glucose tolerance, and therefore an
insulin and is seen predominantly in people under increased risk of developing diabetes: the preva-
the age of 40. Type 2 diabetes (which constitutes lence of the disease rises to 5% or greater in those
approximately 80% of people with diabetes) is over the age of 65 (Peters and Davidson, 1992).
characterized by resistance to insulin production, Type 2 diabetes is reaching epidemic proportions.
usually due to obesity. Though previously seen in First line management of people with type 2 dia-
people over the age of 40, it is now increasingly betes is by dietary measures, although medication
being seen in teenagers and young adults. Other or insulin may be indicated at a later date.
types of diabetes are related to pregnancy, genetic Encouraging people with diabetes to stick to a
healthy eating programme is generally believed to
have a positive impact on overall diabetic control, so
ABSTRACT influencing the development of complications
With diabetes an ever-increasing problem across the developed world, a (Diabetes Control and Complications Trial, 1993).
great deal of research has been carried out into the effects of the disease The United Kingdom Prospective Diabetes Study
on the patient. Yet despite the fact that type 1 diabetes accounts for only a (UKPDS) confirmed the importance of intensive
relatively small proportion of worldwide cases, it has been the focus of nutrition therapy for people with type 2 diabetes
research attention. This study aimed to investigate the distress associated (Franz et al, 2000).
with type 2 diabetes, whether gender differences existed in the impact of Treatment of people with type 2 diabetes and its
type 2 diabetes and how men and women viewed dietary management. A complications has been estimated to take up 5–10%
multi-method, two-stage research approach was taken. Quantitative data of NHS resources (Alberti, 1997), predominantly
were obtained using the Problem Areas in Diabetes (PAID) questionnaire, for inpatient care. With the escalating incidence of
and no statistically significant gender difference was identified. Worrying diabetes, this is likely to increase. The current phi-
about the future, the possibility of complications and feelings of guilt or losophy of care is to prevent the early onset of dia-
anxiety when ‘off-track’ with diabetes management were sourcces of signif- betic complications, which can be effectively
icant distress. Treatment mode, length of time diagnosed with diabetes screened for and managed in a primary care setting.
and age were significant factors which impacted on the emotional distress Hence, it is anticipated that there will be increasing
experienced by the individual. A subsample of respondents took part in demands on health-care professionals to help peo-
gender-specific focus group interviews which explored issues identified in ple adjust to the impact of diabetes. In view of this,
the survey. Behavioural impact, emotional impact and fear of complica- it was felt that it would be useful to carry out a study
tions were major themes identified in the interviews. Views of the dietary to investigate the impact of type 2 diabetes.
management of diabetes were also explored within the focus groups and
three broad categories identified: dietary restrictions, value judgments and Literature review
the influence of others. Awareness by health-care professionals of factors Clinical opinion on what constitutes appropriate psy-
influencing adaptation to diabetes is recommended. chological adjustment to diabetes is conflicting and
the equation ‘good adjustment equals good diabetic

606 British Journal of Community Nursing, 2002, Vol 7, No 12

control’ is overly simplistic. Emotional adjustment, Paterson et al (1998) carried out an ethnograph- ‘The literature
by definition, is dynamic and fluctuating. It is an ic meta-analysis, in which the results of qualita-
ongoing process that is shaped by the ups and downs tive studies were synthesized to provide informa- available identifies
of the disease and the events of everyday life. tion and insights into how people with diabetes that diabetes and
A qualitative, descriptive study carried out by adapt to and manage their illness. A literature its management
Handron and Leggett-Frazier (1994) investigated search identified 43 research reports, which
stressors that impact on a person’s ability to cope addressed 38 discrete studies and fulfilled explic- can have a
with type 2 diabetes. Data were accumulated from a it inclusion criteria. A single researcher carried considerable
series of in-depth counselling sessions with six par- out the initial analysis. Trustworthiness was impact on people’s
ticipants with type 2 diabetes and their families. achieved through the use of multiple researchers
Factors impacting on diabetes management that to review this analysis, identify negative or non- lives. In some
emerged included: a sense of isolation from the confirming cases and test rival hypotheses cases this may
family; co-dependency; experience of loss; overuse (Paterson et al, 1998). even result in
of defence mechanisms; low self-esteem; irritabili- These findings demonstrated ‘balance’ as the
ty; depression; and secondary stressors not related predominant metaphor of living with diabetes. distress.’
to diabetes, e.g. financial concerns, marital prob- Balancing requires an individual to assume an
lems. A significant loss of freedom was identified active self-care role and is achieved through expe-
in relation to food and the ability to eat what, where rience (Paterson et al, 1998). It involves knowing
or when individuals chose. the body, learning how to manage diabetes and
Limitations were identified by the authors. fostering supportive, collaborative relationships
Although the sample consisted of men and women, (Paterson et al, 1998). Learning to balance is a
the study did not examine differences in their experi- developmental process in which one learns to
ences. Using counselling sessions for data collection assume control of diabetes management.
could have presented some difficulties due to the The strength of the study lay in its methodology.
subjective nature of the relationship formed between The limitations, which were acknowledged by the
counsellor and client. Bias during data analysis was authors, are that most of the participants were well
avoided through the use of a second investigator educated, white women with type 1 diabetes
to support the validity of the coding, although the (Paterson et al, 1998). The findings therefore
small sample size means the findings cannot be may only be applied with caution to others. The
generalized to all individuals with type 2 diabetes. findings reflect the lack of research investigating
In an attempt to identify the factors influencing the experience of people, particularly men, living
the attitudes of women with type 2 diabetes and its with type 2 diabetes.
treatment, Dietrich (1996) used a previously tested The literature available identifies that diabetes
interview guide. This allowed comprehensive and and its management can have a considerable impact
systematic data gathering. However, only seven par- on people’s lives. In some cases this may even
ticipants could be recruited, resulting in several lim- result in distress. Gender has been highlighted as
itations to the study, which are acknowledged by the a variable that may influence this experience,
author. Nevertheless, the analytic methods used but individuals with type 2 diabetes have not been
resulted in categories for investigation being deter- studied to any great depth. After reviewing the lit-
mined by the research participants, so minimizing erature, therefore, our investigation into the impact
researcher bias (Polit and Hungler, 1999). of type 2 diabetes was refined to include the
The subcategory of food, cooking and exercise secondary questions:
accumulated the most responses (Dietrich, 1996). ● What is the diabetes-related distress of type 2
Giving up certain foods and incorporating national diabetes on men and women?
guidelines for healthy eating were seen as challenges ● How do women and men view the dietary man-
to self-care. These findings support the work of Koch agement of type 2 diabetes?
et al (1999) who found that the women in their study
felt restricted by dietary guidelines. Dietary restric- Methodology
tions and meal schedules also caused difficulties A multi-method research design (Polit and Hungler,
within the family, with some women having to bal- 1999) was employed to answer the research ques-
ance personal needs with family preferences tions. A two-stage approach allowed for the collec-
(Maclean, 1991; Handron and Leggett-Frazier, 1994; tion and analysis of quantitative data, which formed
Dietrich, 1996). However, some women may view the basis of questions for deeper exploration in
increased flexibility within an otherwise unhealthy focus group interviews. Clinical experience seemed
family diet as a positive outcome. to indicate that there were gender differences in

British Journal of Community Nursing, 2002, Vol 7, No 12 607

 RESEARCH STUDY

relation to the impact of diabetes and that this hypothesis could only be fully
tested in a multi-method design.
A questionnaire was used to gather quantitative data and focus group inter-
views provided qualitative information. The questionnaire used was the
Problem Areas in Diabetes survey (PAID) (Polonsky et al, 1995), which had
been previously tested for validity and reliability in other studies (Polonsky et
al, 1995; Welch et al, 1997; Snoek et al, 2000), although none of the studies was
without its limitations. The questionnaire is a 20-item measure of emotional
adjustment to life with diabetes, covering topics including – among others –
goals of treatment, family support, worry about complications and eating and
drinking. Each item is rated on a 5-point Likert scale, reflecting the degree to
which the item is perceived as a problem. The scale ranges from 0 (not a prob-
lem) to 4 (serious problem). It is scored 0–100, with higher scores indicating
greater emotional distress.
The open questions developed for the focus group interviews were derived
from the literature and initial analysis of the PAID questionnaire. A panel of
people with diabetes who were excluded from the study reviewed the focus
group questions.

Acquiring the study participants

The sample population was taken from one rural primary care trust. Data pro-
tection legislation (HMSO, 1998) meant that the researchers were unable to
access the diabetes registers for the whole trust. Three general practices were
approached and informed about the study, and were unanimous in their support.
Permission was given by the GPs to access the diabetes registers at their gener-
al practices. Patient population parameters indicated that sufficient numbers
of people with type 2 diabetes were obtainable from these three practices.
People with type 2 diabetes registered with the practices were selected using
stratified random sampling (Polit and Hungler, 1999) which guaranteed the
appropriate representation of men and women. Exclusion criteria were people
who were blind or partially sighted as they would have had difficulty complet-
ing a questionnaire. A sample of 50 men and 50 women were identified. Ethics
approval was obtained from the health board’s ethics committee.
A letter was sent out from the GPs to individuals in the identified sample
describing the study and inviting them to participate. People could participate in
two ways: they could return the enclosed anonymous questionnaire and/or offer
to take part in a focus group interview.

500 British Journal of Community Nursing, 2002, Vol 7, No 10

Data collection a greater number of women had PAID scores
Sixty people (36 women and 24 men) returned the of 1–25.
completed questionnaire. This gives a response
rate of 60% which is acceptable within this Gender differences
methodological design (Burns, 2000). A total of No significant difference between the PAID scores
51 people (32 women and 19 men) returned the for men and women was found in this sample (two-
form offering to take part in the focus group inter- tailed p = 0.80). This result is similar to Sanden-
views. Sampling was undertaken by selecting Eriksson (2000) who found an absence of gender
names at random from those who volunteered until difference to the impact of diabetes. However, sever-
eight men and eight women were identified. Five al other studies (Bradley and Lewis, 1990; Fitzgerald
women and five men actually participated in two et al, 1995; Snoek et al, 2000) did identify gender
gender-specific groups. The focus group interviews differences in PAID scores.
were held in a central location that was readily
accessible for all participants. Treatment modes
Table 2 shows the number of participants using dif-
Results from the questionnaires ferent modes of treatment. A significant difference
The questionnaires were analysed using the was found between these groups (two-tailed
Statistical Package for the Social Sciences (SPSS). p = 0.002). The group of respondents managing their
Non-parametric statistics (Diamantopoulus and diabetes with diet and insulin demonstrated signifi-
Schlegelmilch, 2000) were used to examine the cantly higher total PAID scores when compared
scores from the different groups of participants – with the other treatment modes (Table 2). This is in
the Mann-Whitney U test (Diamantopoulus and keeping with the results of Via and Salyer (1999)
Schlegelmilch, 2000) for gender and the Kruskal- who noted that people using oral medication had a
Wallis one-way analysis of variance (ANOVA) greater ability to cope with feelings and to motivate
(Diamantopoulus and Schlegel-milch, 2000) for themselves compared with those using insulin.
other variables. A significance level of 5% was
used to conduct the hypothesis testing, i.e. a p- Length of time diagnosed
value of 0.05 or less would indicate statistical Length of time diagnosed also had a significant
significance. It was possible to calculate PAID relationship to the levels of stress of the participants
scores for only 57 of the returned questionnaires (two-tailed p = 0.001). Respondents who had been
since the others were incomplete. diagnosed for up to 5 years had significantly lower
Eleven respondents (19%) had a PAID score of 0, total PAID scores compared with respondents diag-
illustrating an absence of diabetes-related distress. nosed for longer periods of time (Table 3). This
The remaining 46 respondents (81%) therefore did may be due to the fact that these individuals are
experience some degree of distress attributable to still accessing information about diabetes and may
diabetes. Total PAID scores for men and women not yet have grasped the long-term implications
were compared (Table 1) and showed that of the illness. Those diagnosed for 6–10 years

British Journal of Community Nursing, 2002, Vol 7, No 10 501

 RESEARCH STUDY

demonstrated significantly higher PAID scores

Table 1. Total PAID scores for men and women than any other group which may imply that the
reality of diabetes has impacted on them, but, with
PAID PAID PAID PAID duration and survival through time, distress related
score of score of score of score of to diabetes decreases. Another explanation may be
Gender 0 1–25 26–50 51–75 Total that increasing levels of knowledge about diabetes
Female Count 7 24 2 2 35 decrease diabetes-related distress, as previously
% 20% 68.6% 5.7% 5.7% 100% reported (Via and Salyer, 1999).

Male Count 4 14 2 2 22
% 18.2% 63.6% 9.1% 9.1% 100% Relevance of age
Age was another significant factor in diabetes-relat-
Total Count 11 38 4 4 57 ed stress levels, with older respondents, aged 80
% 19.3% 66.7% 7.0% 7.0% 100%
years and over, demonstrating significantly lower
PAID scores compared with younger respondents
(two-tailed p = 0.003) (Table 4). A possible explana-
Table 2. Mean rank of total PAID scores by treatment tion is that the older adult may have an expectation
mode of ill health and so take a more pragmatic approach
to diabetes, as age is a factor that influences emo-
tional distress attributable to type 2 diabetes
Number of Mean Rank of
Treatment mode respondents PAID score (Polonsky et al, 1995).
There were other insights gained from the ques-
Diet only 10 16.45
tionnaire. Twenty respondents identified feelings of
Diet and tablets 35 27.99 deprivation regarding food and meals as a minor
Diet and insulin 11 41.09 problem. The questions pertaining to worrying
about the future and the possibility of complica-
Missing 1
tions, feelings of guilt or anxiety when one gets ‘off
Total 57 track’ with one’s diabetes management accrued the
largest number of respondents with 33 and 31
respondents, respectively. Initial analysis of the
questionnaires demonstrated large numbers of
Table 3. Mean rank of total PAID scores by length of
time diagnosed responses for six questions and these were used in
the focus groups as a set of open questions (Box 1).

Length of time Number of Mean rank of Results of the focus

diagnosed respondents PAID score
group interviews
Up to 5 yrs 32 20.92 The analysis of the qualitative findings used the
6-10 yrs 13 39.46 processes identified by Morse (1991): compre-
hending, synthesizing, theorizing and recontextual-
11-20 yrs 7 27.93
izing. The transcripts were read and meaningless or
Missing 5 unrelated material was discarded. If there was any
Total 57 doubt about a portion of text, it remained.
Remaining text was reread and sorted into mean-
ingful segments or units that dealt with a theme or
idea. These meaningful units were repeatedly
Table 4. Mean rank of total PAID scores by age (n=57) reviewed to ensure appropriateness and were then
coded. The codes were used to sort and organize
Age Number of respondents Mean rank of PAID score the text so that patterns and structures connecting
the thematic categories could then be identified.
<40-59 yrs 13 39.42
The focus group interviews identified three main
60-69 yrs 22 25.20 themes in relation to diabetes-related distress:
70-79 yrs 14 31.64 behavioural impact, emotional impact and fear of
complications (Figure 1). These broad categories
>80 yrs 7 12.29
were identified in relation to the aim of the study
Missing 1 and the secondary research questions. Three further
themes were identified in relation to the secondary

610 British Journal of Community Nursing, 2002, Vol 7, No 12

research question on views regarding dietary man-
agement: dietary restrictions, value judgements, Box 1. Topics for focus group interviews
influence of others. Feelings of deprivation regarding food and meals
Not knowing if your mood or feelings are related to your diabetes
Behavioural impact Worrying about low blood sugar
Within the category of behavioural impact, four
Feeling constantly concerned about food and eating
subcategories were identified (Figure 1). The sub-
category of being ‘ever vigilant’ was identified by Worrying about the future and the possibility of serious complications
both women and men. Women applied this to their Feelings of guilt or anxiety when you get off track with your diabetes
dietary management and it had a major impact on management.
their lives. In comparison the men felt the need to be
ever vigilant in relation to their blood monitoring: of associated complications and the unpredictabili-
‘You’ve got to watch what you are eating all ty of diabetes.
the time.’ (Woman 3) ‘Once you get it there is nothing you can do
‘I’m at work – I don’t want to stop to test.’ about it.’ (Man 1)
(Man 3) The men identified a need for consistency by
Women rationalized ‘bad’ behaviour such as health-care professionals in relation to management
binge eating, thereby eliminating the feelings of targets to reduce ambiguity and uncertainty. This
guilt: may explain why the men described feelings of
helplessness regarding their diabetes outcomes and
‘Stress is probably what causes you to
their perceived failure to meet management targets.
binge.’ (Woman 2)
‘It depends on who you speak to … the levels
Men did not demonstrate similar rationalization.
alter.’ (Man 3)
A typical comment was:
There were gender differences in the use of denial
‘I think about eating sweets as looking for
as a coping mechanism. The men frequently denied
energy from sugar.’ (Man 4)
diabetes had any impact on their lives, in contrast to
Both women and men identified that due to their the women:
diabetes their behaviour had been altered in positive
‘I don’t notice it. I don’t really think of
and negative ways. Examples of altered behaviour
are buying alternative foods and increasing exer- myself as being diabetic at all.’ (Man 5)
cise.
‘I go to the pub every day and I drink diet The women relayed fears in relation to their blood
Coke.’ (Man 4) glucose levels that included both hypoglycaemia
and hyperglycaemia. The men did not identify fear Figure 1. Themes from focus
‘I’ve bought an exercise bike.’ (Woman 5) as an independent emotion but rather linked fear to group interviews regarding
For the man, the local pub had taken to buying in the fear of complications. diabetes-related distress.
his favourite diet drink to encourage his attendance
at the pub.
Ever vigilant
For women the influence of family members was
most relevant. In contrast, the men denied any influ- Rationalizing behaviour
ence by others in the management of their diabetes.
Behavioural impact Altered behaviour
Emotional impact
Within the category of emotional impact of dia- Influence of others
betes, three subcategories were identified (Figure
1). Women in particular felt a loss of control in rela- Loss of control
tion to being diagnosed with diabetes and the fact
that, for them, diabetes became all-consuming. Impact of diabetes Emotional impact Denial
‘It takes over your life. It does really, to a Fear
certain extent … it shouldn’t but it does.’
(Woman 2)
Fear of complications
In contrast, the men emphasized the inevitability

British Journal of Community Nursing, 2002, Vol 7, No 12 611

 RESEARCH STUDY

‘Educators need Fear of complications Limitations of the study

While women also expressed this fear it tended The study was limited by time as one of the authors
to ask individuals to be triggered by the knowledge of another person was undertaking this study as part of a higher
about their experiencing difficulties with their diabetes and degree programme. It is also limited due to the
concerns and how therefore overlaps with the theme of influence small sample size. In addition, the sample com-
of others. prised several participants who were known by one
management of of the researchers in her capacity as a diabetes nurse
‘Just what sort of long-term damage is it
their diabetes doing?’ (Woman 3)
specialist and this may have influenced responses.
impacts on their life
Dietary management Conclusions
so that gender The women identified dietary restrictions as an area This study identified the presence and absence of
differences can of their management that caused them concern. diabetes-related distress in people with type 2 dia-
be identified These restrictions resulted in feelings of deprivation betes in a rural community. Quantitative data did
and resentment. not identify any statistically significant results in
and appropriate relation to gender.
‘I am sitting looking to see what someone
education provided.’ else is eating. It annoys me.’ (Woman 1)
Statistically significant results were found in rela-
tion to the age of the person with diabetes, treatment
The men similarly identified dietary restrictions modality and length of time since diagnosis. People
as having an impact but did not tend to view the aged over 80 years had less diabetes-related distress
changes as restrictively as the women. than younger people. Respondents who had been
diagnosed for up to 5 years demonstrated signifi-
‘What you actually eat has changed but I
cantly lower total PAID scores when compared with
still very much enjoy my food.’ (Man 2)
respondents who had been diagnosed for longer.
The reason for any gender difference may be People whose diabetes was managed with both diet
related to food preparation in the home. Women and insulin had higher PAID scores than those on
with diabetes appeared to prepare separate meals diet/or oral hypoglycaemic agents alone.
for the family and themselves or simply did not Although it cannot be generalized, the data show
participate in certain courses if deemed unaccept- that people who have had diabetes for more than
able. The female participant who lived alone did 5 years, were treated with diet and insulin and who
not appear to experience dietary restrictions to the were younger than 80 years demonstrated the high-
same extent as others in the group, perhaps illus- est PAID scores. This has implications for the uti-
trating the importance of family meal preparation lization of resources and support mechanisms
to this category. required by people with type 2 diabetes.
The women, as opposed to the men, specifically Qualitative findings identified some gender dif-
illustrated the subcategory of value judgments in ferences in behaviour and emotional impact, fear
relation to dietary management: and views of dietary management. These findings
too cannot be generalized, but demonstrate that gen-
‘Then again, it depends if you have been
der differences should be explored by qualitative
good or bad.’ (Woman 1)
research as opposed to quantitative design.
This may have been as a result of food behaviour
being linked to the women’s self-esteem, as reported Recommendations
by Maclean (1991). Further research with a larger sample would produce
The women identified the influence of others as more statistically significant results. Studies that
problematic due to their concerns about fulfilling explore rural/urban differences and whether the
family requirements and their own dietary needs. availability of food choices impacts on views in rela-
Similar findings by Koch et al (1999) and Handron tion to dietary management would be useful. Focus
and Leggett-Frazier (1994) support these findings. group interviews could further explore some of the
One woman expressed feelings of guilt in relation identified gender differences. This would involve
to admissions about dietary indiscretions. The men further refinement of the interview schedule.
identified dietary-related situations that might The findings highlight several important issues
impact on their experience of diabetes. The situa- for practice. Educators need to ask individuals about
tions mentioned were related to eating in someone their concerns and how management of their dia-
else’s house and therefore afforded the men little or betes impacts on their life so that gender differences
no control over what they ate, so identifying a link can be identified and appropriate education provid-
with the loss of control category identified earlier. ed. There is a need for health-care professionals to

612 British Journal of Community Nursing, 2002, Vol 7, No 12

recognize that quality-of-life issues may impact on by women with type II diabetes: a qualitative study.
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The authors acknowledge Dr G Welch and wish to thank

him for permission to use the PAID questionnaire. KEY POINTS
Alberti KG (1997) The costs of non-insulin dependent ● Treatment mode, length of time diagnosed with diabetes and age were
diabetes mellitus. Diabet Med 14(1): 7–9 all statistically significant factors, which impacted on the diabetes-
Amos AF, McCarty DJ, Zimmet P (1997) The rising
global burden of diabetes and its complications: esti- related emotional distress experienced by the individual with Type 2
mates and projections to the year 2010. Diabet Med diabetes.
14(suppl 5): S7–85
Bradley C, Lewis KS (1990) Measures of psychological ● Gender-specific focus groups identified a behavioural impact, an
well-being and treatment satisfaction developed from
the responses of people with tablet-treated diabetes. emotional impact and a fear of complications in relation to Type 2
Diabet Med 7: 445–51 diabetes.
Burns RB (2000) Introduction to Research Methods. 4th
edn. Sage Publications, London
HMSO (1998) Data Protection Act. www.hmso.gov.uk/ ● Views of the dietary management of diabetes explored within the
acts/acts1998/80029--a.htm (accessed 20 November focus groups identified three broad categories: dietary restrictions,
2002)
Diabetes Control and Complications Trial Research value judgments and the influence of others.
Group (1993) The effect of intensive treatment on the
development and progression of long-term complica- ● Educators need to ask individuals about their concerns and how
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