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DOI: 10.1111/dme.12105
Review Article
Barriers to self-management of diabetes
Abstract
People with diabetes hold major responsibility for the day-to-day management of their chronic condition. The management
that, amongst others, includes blood glucose monitoring, medication taking, diet and physical activity, aims at normalizing
blood glucose levels. In many individuals, the level of glycaemia, however, frequently exceeds the recommendations.
This observation, together with patients’ and practitioners’ reports, suggests that active self-management is suboptimal.
Various reasons, both individual and environment related, contribute to the suboptimal concordance with treatment
regimen. The aim of this review is to discuss some of the barriers to optimal diabetes self-management.
Diabet. Med. 30, 413–420 (2013)
Table 1 Potential issues associated with good management of diabetes Although knowledge does not thus guarantee good glycaemic
control, it can help some people feel empowered to actively
Individual related participate in decision making regarding their self-care.
Knowledge
Empowerment Importantly, those with lower levels of knowledge may be
Health literacy overwhelmed by the information overload, currently avail-
Motivation able from various sources, and be paralysed to make any
Health beliefs
Self-efficacy treatment decisions oneself. Knowledge, together with suffi-
Coping and problem-solving skills cient resources such as skills, contributes to empowerment; it
Locus of control gives the individuals freedom to make choices between
Depression
Anxiety different treatment options. Empowerment was indeed
Forgetting another factor identified by the DAFNE participants to
Excess use of alcohol influence their ability to keep in control with their diabetes
Other diseases that may interfere with diabetes management
Environment related [14]. The shift from a rigid adherence to provided instruc-
Social support tions to making informed choices that better suit individual
Provider factors life circumstances was liberating for many of the partici-
Socio-economic factors
Distance to the site of health care pants. Feeling empowered to self-manage one’s diabetes is
Other competing interests and duties associated not only with better concordance with self-care
Factors related to the availability of good quality health care, behaviours, but also with increased quality of life and better
nutritious foods, exercise opportunities, etc.
treatment satisfaction [16].
Health literacy, a term closely related to knowledge, refers
to the individual’s capacity to read, understand and make use
Various interventions, with variable levels of success, have of healthcare-related information for decision making and
been undertaken to either increase the diabetes knowledge or self-care. In diabetes, health literacy is required for tasks such
provide skills to improve self-management. A meta-analysis as understanding the rationale behind the self-management
of such studies showed that, at least in the short term, the regimen, reading and interpreting food labels, carbohydrate
knowledge levels, self-monitoring practices and dietary counting and appropriate insulin administration. While low
habits tend to improve [13]. However, increased knowledge levels of health literacy may not prevent blood glucose
is not consistently related to glycaemic control. In particular, monitoring, to interpret and correctly act upon the obtained
didactic interventions without interaction between partici- results may be compromised in low health literacy. Subopti-
pant and instructor proved less efficient in improving mal health literacy is also related to reduced ability to recall
glycaemia compared with interventions more collaborative oral medical instructions and the consequences of worse
in nature [13]. The Dose Adjustment for Normal Eating glycaemic control [17,18]. Interestingly, various services,
(DAFNE) is an example of a comprehensive educational education programmes and interactive diabetes management
programme aimed at improving diabetes management in sites have recently become available via the Internet. Thus,
Type 1 diabetes. The programme emphasizes the importance health literacy is increasingly being linked to computer
of insulin dosing in relation to the carbohydrate content of literacy, which may disadvantage certain patient groups, such
the meal. Importantly, individuals completing the pro- as elderly individuals. Despite these observations, conclusions
gramme have shown reduced levels of glycaemia. According made in a recent review paper do not support the intuitive
to the programme participants, increased knowledge was one expectation that low health literacy would automatically be
of the factors affecting their ability to better control diabetes associated with inadequate diabetes self-management [19].
after training [14]. For people with Type 2 diabetes, a similar Instead, health literacy might influence self-management via
group education programme called DESMOND (Diabetes sociocognitive variables such as motivation.
Education and Self-Management for Ongoing and Newly
Diagnosed) has been designed [15]. Most of the curriculum
Motivating self-management—health
of the programme is focused on lifestyle factors, such as
beliefs
dietary choices, physical activity and cardiovascular risk
factors. Importantly, there is currently a lack of structured
education for minority groups. Despite a sufficient amount of knowledge and a fairly good
While knowledge is unquestionably important in self-care, perception of one’s abilities to make changes, adopting and
it alone is unlikely to be sufficient to improve diabetes maintaining self-management practices may not always be
control. It can be speculated that, while the less knowledge- easy. Indeed, motivation is a major factor in self-manage-
able individuals may be prone to passively follow the ment. The importance of motivation was also identified by
instructions and consequently achieve good glycaemic con- the DAFNE participants as a factor influencing their self-
trol, those with more knowledge may be more flexible in management [14]. Motivation may be extrinsic, such as
their self-care behaviours and fail to reach the HbA1c goals. the type of motivation provided by the healthcare team.
such a diet makes them feel healthy and less likely to Those assuming that occurrences are a result of their own
anticipate that the diet requires use of unfamiliar ingredients. behaviours are thought to have an internal locus of control,
However, those not adhering to the diet more frequently as opposed to the ones with external locus of control for
expressed a view that their important referents (families, whom the causes lay within the environment, luck or chance.
friends and peers) would not approve of such a diet. The perception of control over one’s life events is undoubt-
edly also important in diabetes management, and it has also
been acknowledged by the people with diabetes themselves.
Coping and problem-solving skills
In one study, the majority of insulin-treated individuals
Coping refers to an individual’s responses to encountered perceived internal control as the culprit for their diabetes
challenges and their ability to solve problems in order to control, while the external factors were appointed to a much
manage stress [32]. Coping involves all spheres of human lesser extent [21]. In addition, a group of people with Type 2
existence, i.e. cognitions, affects and behaviours. Depending diabetes generally acknowledged that their diabetes control
on areas emphasized, division into appraisal-, emotion- and was something they could personally influence, but also
task-focused coping strategies may be carried out. In stressed the strong impact health professionals and family
appraisal-focused coping, individual aims at changing one’s members had on their control [37]. Belief in one’s ability to
cognitions related to the problem. This may be accom- have control over life events and higher perceptions of
plished, for example, by distancing oneself from the problem longevity have been associated with more prudent diabetes
or denying its existence or significance. The use of emotion- self-care practices and better self-assessed diabetes control
focused coping aims at managing the emotions aroused when [38].
facing the problem. Finally, when employing task-focused In their study, Peyrot and Rubin separated internal
coping, the individual, via selected actions, aims at eliminat- diabetes locus of control into ‘autonomy’ and ‘self-blame’
ing or reducing the effect of the problem. components [39]. Autonomy was found to be associated with
Denial, as a coping mechanism, is a key factor inhibiting higher diabetes self-efficacy and emotional well-being, while
adherence to a healthy lifestyle [12]. In insulin-treated less frequent blood glucose monitoring and insulin dose
individuals, denial is associated with worse glycaemic control adjustment, and more frequent binge eating were associated
[33], while task-oriented coping is likely to improve it. with self-blame. These results highlight the importance of
Individuals using wish-fulfilment coping, however, have been distinguishing between the two factors within the single
shown to be less healthy than those using problem-solving concept of internal locus of control. Although internal locus
coping strategies [34]. Coping strategies should be discussed of control is generally regarded as an empowering charac-
collaboratively to facilitate potential barriers and ensure teristic, enabling an individual to act in order to influence
appropriate goal setting. their health, a person who perceives that his or her actions
Prior to successfully tackling a given problem, it has first to determine health is probably also more likely to blame his- or
be acknowledged. Indeed, only after having identified the herself in the case of negative outcomes. Importantly, as seen
problem, one may specify the desired goals and any potential in the above study, such a self-blame may negatively affect
barriers related to the required behaviour. This is followed self-care behaviours.
by selection and implementation of appropriate actions and, Potentially because of the dichotomized nature of the
subsequently, evaluation of the outcome. The chain of events concept of internal locus of control, inconsistent results have
taking place after having acknowledged the problem is called been obtained from studies investigating its association with
problem solving. As the responsibility of the diabetes glycaemic control. In one study, internal locus of control was
management rests heavily on the person with diabetes, its associated with better glucose control in insulin-treated
success depends on the individuals’ ability to adequately diabetes [33]. Yet, no association was found in a population
solve various problems on a day-to-day basis. of 1034 individuals with diabetes [38].
The importance of problem solving has been shown in
various studies. King et al., for example, reported that
Depression
problem-solving ability was associated with healthier eating
patterns [25]. In another study, better executive functions, Depression, commonly observed in people with diabetes,
referring to planning and problem-solving abilities, indepen- may negatively affect how individuals take care of them-
dently predicted better diabetes self-management [35]. Those selves. Importantly, depressed individuals do not differ in
with better problem-solving skills also monitor their blood diabetes-related knowledge from their non-depressed coun-
glucose levels more frequently [36]. terparts, but it is rather the depression-related symptoms,
such as loss of interest, reduced decision-making ability and
fatigue that likely contribute to the poor self-management
Locus of control
[40]. Even low levels of depressive symptoms, and not only
Individuals possess different views regarding how much they clinical depression, have a negative impact on self-care
have personal control over the events occurring in their lives. adherence [41]. Amongst others, depressive symptom
severity in diabetes has been associated with a less prudent diabetes generally try to avoid hypoglycaemia. In practice,
diet and a reduced adherence to medication regimen [42]. total avoidance may be difficult, however, as seen in one
Additionally, depression has been shown to negatively study where 36% of the individuals with Type 1 diabetes
impact blood glucose monitoring [6]. In people with Type 2 reported having experienced hypoglycaemic coma during
diabetes, depression, via reduced social motivation, impedes their lifetime [49]. Severity and frequency of the episodes
treatment-seeking behaviour and the adoption of effective contribute to the fear of hypoglycaemia. Pramming et al.
self-management behaviour, including physical activity, reported that individuals with Type 1 diabetes fear severe
healthy diet and blood glucose monitoring [43]. hypoglycaemia to the same extent as they fear diabetic
Despite the established association between depression and complications [49]. Moreover, fear of hypoglycaemia is also
diabetes self-care, the relationship between depression and observed among persons with Type 2 diabetes [50]. Impor-
glycaemic control is more controversial. A meta-analysis of tantly, fear of hypoglycaemia may be an important barrier
24 studies including 2817 individuals with Type 1 or Type 2 for the good self-management of diabetes. In some individ-
diabetes concluded that depression was associated with poor uals, fear of hypoglycaemia may lead to the tendency to
glycaemic control [44]. However, another meta-analysis of maintain hyperglycaemia, which, again, has other long-term
1540 participants failed to show such an association [45]. consequences, such as higher rates of microvascular compli-
Moreover, some studies have shown an association between cations and increased risk of death [51].
depression and glycaemia only in individuals with Type 1 Among adolescent boys with Type 1 diabetes, fear of
diabetes [46]. Complexity of the treatment regimen may hypoglycaemia was independently associated with lower
offer an explanation for this observation. Indeed, Surwit adherence to the insulin regimen [52]. In addition, among
et al. reported that, among individuals whose diabetes was people with Type 1 diabetes, fear of hypoglycaemia can be a
managed with three or more daily insulin injections, depres- major barrier to physical activity. Importantly, factors such
sive symptomatology was associated with HbA1c [47]. as knowledge of insulin action and a post-exercise evening
However, with a less intense diabetes management regimen, snack to reduce the possibility of nocturnal hypoglycaemia
depressive symptoms were not related to glycaemic control. are associated with reduced fear of hypoglycaemia, and may
The authors concluded that the complexity of the treatment thus increase the probability of being physically active. Of
regimen offers more opportunities for the negative mood to interventions to alleviate fear of hypoglycaemia, cognitive
impact self-care. Importantly, potential association between behaviour therapy and blood glucose awareness training
depression and glycaemia does not automatically denote have been shown to be efficient [53]. While cognitive
causality. After all, depression may deteriorate glycaemic behaviour training helps individuals handle their emotions
control via impaired self-care practices, but poor glycaemic when confronting the fearful aspects of hypoglycaemia, the
control may also aggravate depressive mood. blood glucose awareness training may both reduce the fear of
hypoglycaemia but also the actual frequencies of the
episodes.
Fear of hypoglycaemia
Hypoglycaemia, a condition where plasma glucose level falls
Social support
below 4.0 mmol/l, is a common side effect of intensive
diabetes management. The risk of hypoglycaemia is Social support refers to the individual’s perception that
increased in insulin-treated diabetes, but is also evident assistance is readily available should one need it. Provided
when diabetes is managed with oral agents, particularly support may be emotional (e.g. empathy, acceptance, affec-
sulphonylureas. Subsequently, iatrogenic hypoglycaemia is tion), tangible (e.g. financial support, modifying environ-
not only common in Type 1 diabetes, but is also observed in ment), informational (e.g. education, advice) and appraisal
advanced Type 2 diabetes, especially following defective (e.g. feedback, affirmation). Support may be obtained from a
glucose counter-regulation [48]. Besides glucose-lowering number of sources including friends, family members and
drug therapy, factors such as strenuous physical activity, physicians. In a study among individuals with Type 2
liberal alcohol consumption and omission of carbohydrate- diabetes, the attending physician was most frequently (43%
containing meals contribute to hypoglycaemia. If untreated, of the respondents) identified as the primary source of
hypoglycaemia leads to unconsciousness, convulsions and support, followed by the spouse (20%) or another family
even death. In the case of severe hypoglycaemia, external member (19%) [28]. In the same study, however, a total of
assistance in the form of a glucagon injection or glucose 8% of the respondents reported receiving no support at all.
infusion is needed to treat an unconscious individual. As the Social support is not only positively associated with the
seriousness of severe episodes calls for a certain degree of individuals’ perceived self-efficacy in conducting diabetes-
healthy concern, the possibility of hypoglycaemia sets limits related tasks [54], but also with the actual self-management
to the glycaemic management of diabetes [48]. behaviours. Specifically, positive social support is predictive
Because of the unpleasant symptoms, associated health of adhering to diet, exercise, medication and blood glucose-
risks and its socially aversive nature, individuals with monitoring regimen [28]. Lack of support from one’s family
is an important barrier for the active self-management of to restate the given information or instructions in their own
chronic conditions. This is true especially for activities, such words. This enables the practitioner to clarify any misappre-
as eating and physical activity, which are frequently con- hensions at the time of the visit. Such an interactive
ducted within social encounters. Family support is also an communication does not seem to be a norm, however [59].
extremely important factor in childhood and adolescence, Importantly, individuals whose physicians had ensured that
when the individual is still learning the issues related to good the message was properly conveyed were more likely to have
self-management. In the case of Type 1 diabetes, adolescents lower HbA1c levels compared with those whose physicians
who perceived greater caregiver responsibility engaged in did not.
more frequent blood glucose monitoring [55]. Furthermore, healthcare personnel should be aware of the
Although family support is frequently recognized as an primacy effect. That is, individuals tend to remember the first
important factor in lifestyle changes, only 13% of the things they are told. The use of straightforward language and
respondents with diabetes reported that their families had simple sentences should also be favoured. Active self-man-
made any adjustments to their lifestyles that would benefit agement may further be promoted by explaining why certain
them [4]. Moreover, while marital satisfaction has been self-care behaviours are important. Additionally, complex
associated with better adaptation to insulin-treated diabetes instructions should be broken down into smaller segments
[56], not all support is beneficial. Female participants who and important messages repeated to ensure they are not
perceived their partner as overprotective benefited the least missed. Also to increase adherence specific advice, instead of
from an intensive education programme [57]. The investiga- general statements, should be provided. Finally, active self-
tors speculated that overprotection communicates low trust management may additionally be promoted by providing the
in ones’ abilities and thus negatively affects one’s diabetes individual with written instructions to be used as a memory
self-management. aid.
Physicians’ knowledge, beliefs and attitudes may also
influence patients’ self-care practices. Peyrot et al. observed
Provider factors
that providers’ beliefs about insulin efficacy were associated
The quality of provided health care may also influence how with their inclination to delay insulin therapy in people with
people with diabetes take care of themselves. Poor commu- Type 2 diabetes [60]. Hesitation to initiate insulin therapy
nication with the physician, for example, may impede active may also stem from a view that Type 2 diabetes is not a
diabetes self-management. Patient-identified factors promot- serious condition or if the provider perceives that lifestyle
ing a good patient–provider relationship include openness to changes should be sufficient to treat the individual.
dialogue, ability to listen attentively, providing sufficient Moreover, some providers may find diabetes management
amount of time for a patient, providing information and labour-intensive because of the continuous monitoring and
giving rationale for the treatment recommendations [8]. The adjustment required [61]. Providers may also be worried
relationship with the healthcare provider is considered about the fine line between good glycaemic control and
important to the extent that individuals are willing to change hypoglycaemia. Alternatively, some providers have reported
their healthcare providers in order to find a practitioner who being frustrated because of the unpredictable prognosis of
listens to their concerns and gives concise and simple diabetes as, after all, complications may occur despite their
instructions [7]. best efforts. Finally, providers are aware that the manage-
In one study, the majority of the 1092 individuals with ment of diabetes depends mainly on the affected individual
Type 2 diabetes described their patient–provider relationship and, while providers acknowledge that making lifestyle
as unilateral; that is, one in which physicians make decisions changes is sometimes a great struggle, they may also be
and patients are expected to comply [4]. However, being frustrated for not having sufficient training to promote such
engaged in an active partnership, as opposed to a unilateral behavioural changes. The vast number of observed negative
relationship, was associated with a less sedentary lifestyle attitudes among physicians is unfortunate as physicians may
and favourable changes in dietary habits. Importantly, also convey their attitudes to their patients.
patients’ and healthcare professionals’ reports of the issues
discussed during the consultations may differ significantly. In
Conclusion
one study, of the 308 topics the professionals reported having
been discussed, patients recalled only 180 [58]. Moreover, of Successful diabetes self-management requires that individuals
the 168 professional-reported decisions made at the consul- with diabetes frequently monitor their blood glucose levels
tations, patients reported 94. These results indicate a clear and take required actions in order to keep it within a
need for improving practitioners’ communications skills in physiological level. Beyond glycaemic control, other benefits
order to improve patients’ understanding of the instructions of healthy nutrition and physical activity are also stressed.
and subsequently their self-management. Good self-management aims at reducing the risks of diabetic
One way of ensuring that a patient has understood the complications and improving the individual’s quality of life.
items discussed is to ask, after the consultation, an individual Self-management is a continuous process and comprehensive
concordance with the treatment plan is unlikely a norm. 13 Norris SL, Engelgau MM, Narayan KM. Effectiveness of self-
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Funding sources programme for people with newly diagnosed type 2 diabetes:
cluster randomised controlled trial. Br Med J 2008; 336: 491–495.
This study was supported by grants from the Signe and Ane 16 Anderson RM, Funnell MM, Aikens JE, Krein SL, Fitzgerald JT,
Gyllenberg Foundation, Folkh€alsan Research Foundation Nwankwo R et al. Evaluating the efficacy of an empowerment-
based self-management consultant intervention: results of a two-
and Wilhelm and Else Stockmann Foundation.
year randomized controlled trial. Ther Patient Educ 2009; 1: 3–11.
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MS. What did the doctor say? Health literacy and recall of medical
Competing interests
instructions. Med Care 2012; 4: 277–282.
None declared. 18 Schillinger D, Grumbach K, Piette J, Wang F, Osmond D, Daher C
et al. Association of health literacy with diabetes outcomes. J Am
Med Assoc 2002; 4: 475–482.
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