Magazine 2016
International Peer-Reviewed Journal
RESEARCH HORIZONS, VOL. 6 JULY 2016
PSYCHOLOGY
FACTORS INFLUENCING SELF-CARE ACTIVITIES IN
DIABETES MELLITUS : A REVIEW
*
Sravanti Ghosh
*
*Debdulal Dutta Roy
ABSTRACT
As per WHO estimates and regional studies, diabetes mellitus is a chronic illness, which is on the rise
in the Indian sub-continent. The patient plays an important role in the management of the disease as it
is a largely self-managed illness. A number of factors affect the self-care activities of the patient. The
current paper is a narrative review which presents some of the factors that affect self-care activities of
diabetic patients. These factors can be classified as demographic factors such as age, gender,
educational level, income level, and temporal factors which include co-existing psychiatric conditions
such as depression, anxiety, or psychological issues such as diabetes distress. How do they help?
These factors can help in designing intervention strategies for improving self-care of patients and in
diabetes education.
Key Words : Diabetes mellitus, self-care, demographic factors, psycho-social factors.
Introduction
A chronic disease is defined as one that lasts for three months or more as stated by the U.S. National
Center for Health Statistics. Generally, chronic diseases cannot be prevented by vaccines or cured by
medication, nor do they just disappear. In this regard, the role of health psychology can be summed
up as that of a mediator, in the relationship between patient and health care system. Social and
psychological factors influence health behavior such as how and when a patient is likely to seek help,
communicate openly and freely with the physician and follow medical recommendations. And in this
sense, behavioral and social sciences play a crucial role in the medical setting. The challenges involved
in dealing with any chronic illness mostly arise from the sustained efforts to maintain self-care behaviors
on a daily basis. Coping with any illness is a challenge in itself. And the complex nature of self -care for
certain chronic conditions such as diabetes makes for difficult adjustment to the disease.
Adherence and Compliance in Diabetes Mellitus
One line of research in health psychology concerning chronic illnesses, deals with the question of
whether some patients are more likely to hold on and follow treatment recommendations? “Adherence”
and Compliance” represent two different concepts with very different implications. WHO defines
adherence to long-term therapy as “the extent to which a person’s behaviour—taking medication,
following a diet, and/or executing lifestyle changes—corresponds with agreed recommendations from
a healthcare provider”. Going by this definition, adherence typically signifies concepts of choice,
mutuality in goal setting, treatment planning and implementation of the regimen. It suggests an attitude,
a willingness to see through health advisory and in the behavioral context. It involves the actual
performance of the specific recommendations. Compliance, on the other hand, refers to the extent to
which a person’s behavior coincides with medical advice (Haynes, Taylor, Sackett, 1979; as cited in
Delamater, 2006). It usually implies patient’s behaviors of performing health recommendations i.e.
taking medication, following diets, or executing lifestyle changes. It coincides with healthcare providers’
recommendations for health and medical advice. Any physician or primary care provider can cite
numerous experiences of dealing with patients, who seek help but fail to or choose to ignore medical
care recommendations. These experiences could range from a patient who “misses” medicine intake,
cheats on the diet or fails to follow the exercise regimen, continues to smoke or consume alcohol in
spite of contrary recommendations.
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As a chronic illness, diabetes is largely self-managed and dependent on performing several key self-
care behaviors. Both self-care and management focus on the individual’s ability to engage in behaviors
that protect, promote, monitor and manage the symptoms of the illness while at the same time promoting
the well-being of the patient. The general definition of self-care is “intentional actions one takes for
physical, mental and emotional health”. According to the American Association of Diabetes Educators
(
AADE), there are seven essential self-care behaviors listed for successful and effective diabetes
management. These include healthy eating, being active, monitoring, taking medications, problem -
solving, healthy coping, reducing risks (AADE, 2014). Enlisting very specific, narrow self-care behaviors
allow developing and practicing a knowledge base for Diabetes Self-Management Education (DSME)
on a global level.
As a progressive, metabolic disorder, diabetes affects nearly every organ and system in the body. The
long-term effects of unmanaged diabetes include damage, dysfunction, and failure of various organs
(
WHO, 1999). The effects of fluctuating and unmanaged blood glucose levels may be visibly experienced
and can be tackled immediately. It is the associated complications that endanger the patient in the
long run. Associated macro- vascular complications (such as coronary artery disease, peripheral arterial
disease, and stroke) and microvascular complications (which include diabetic nephropathy, neuropathy,
and retinopathy) are the two broad categories of diabetes-related complications. These complications
produce a negative impact on the quality of life of the patients. The cost associated with non - adherence
in diabetes regimen is thus, huge and can lead to debilitating conditions for the patients and ultimately
for their family. Besides the possibility of serious physical health - related complications, dealing with
diabetes on a daily basis can lead to heavy emotional, psychological and economic costs for the
concerned patient and their family. All of these factors can be assumed to play their part in the consequent
non – adherence observed in patients.
Diabetes Scenario in Indian
Wild et al., (2004) projected an estimate of 32 million people with diabetes in India for the year 2000.
And this increase is set to nearly double between the years 2000 and 2030. India is estimated to
possess the maximum number of people with diabetes in the world. In a population-based study –
National Urban Diabetes Study (NUDS), conducted in six large cities from different regions of India,
2
011, indicated that the prevalence of Type -2 diabetes was highest in Hyderabad (16.65%), and
followed by Chennai (13.5%), Bengaluru (12.4%), Kolkata (11.7%), New Delhi (11.6%) and Mumbai
9.3%) (Ramachandran et al, 2001). Further, there is empirical speculation of this disease gaining
(
epidemics like proportions and the burden shifting to children and young adult populations (Mohan et
al., 2007). This has serious implications for the health of the country in general.
While we strive towards greater economic progress, it has also resulted in drastic lifestyle changes for
Indians, irrespective of their geographical location i.e urban or rural area. The practice of urban-like
sedentary lifestyle, greater dependency on fast food, improved transportation facilities, multiple sources
of occupational and personal stress and decreased physical activity create a perfect stage for the
growth of diabetes among Indians. Further, genetic susceptibility, lower BMI as compared to other
ethnic groups, abdominal adiposity (the tendency to store fat in the abdomen region), greater body-fat
percentage and increased insulin resistance all combine to put Indians at a greater risk of developing
diabetes mellitus(Ramachandran & Snehalatha, 2009).
Self-care activities
Presently, “cure” and “diabetes” is a paradox. The single best method of keeping the disease in check
is through the consistent and sustained performance of self-care activities on the part of the patient.
And to that end, diabetes self-care activities are of paramount importance. The behavioral
recommendations of AADE, not only facilitate better glucose control but also prevent or delay the
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onset of complications. However, the recommendations help to ensure lifestyle changes which would
be beneficial for any individual – diabetes or not. Furthermore, it provides scope for skill training and
learning the nuances of better management of the disease thus, allowing the patient to feel in “control”
of the disease and not vice-versa.
The profile of Indian patients with respect to diabetes self-care activities is as varied as the cultural
differences as observed across the nation. Indian studies have mostly considered type-2 diabetes
patients in their sample in exploration of self-care activities (Rajasekharan et al., 2015; Suguna et al.,
2
2
015; Shyamsundar, Singh & Kumar, 2014; Arulmozhi & Mahalakshmy, 2014; Gopichandran et al.,
012 ; Padma, Bele, Bodhare, Valsangkar, 2012; Priya, Hiwarkar, Kakse, Wahab, 2012; Mukhopadhyay
et al., 2010). While, adherence to medication is one of the most commonly reported and followed self-
care activity (Gopichandran et al., 2012; Suguna, Magal, Stany, Sulekha, Prethesh, 2015; Padma,
Bele, Bodhare, Valsangkar, 2012; Arulmozhi & Mahalakshmy, 2014; Shyamsundar, Singh & Kumar,
2
014; Mukhopadhyay et al., 2010), poor adherence has been cited for diet and exercise regimen
(
Rajasekharan, Kulkarni Kumar, Unnikrishnan, Holla & Thapar, 2015; Mumu et al., 2014; Gopichandran
et al, 2012).
Factors influencing self-care activities in Diabetes Mellitus
Some of the critical factors that may influence health behavior and consequent management of the
disease are patients’ lack of knowledge about the disease and its complications, economic constraints
and inadequate support mechanism (Bele, 2013). Diabetes education is pertinent for patient involvement
and creating awareness about the disease. However, it is important to translate into action for the
benefit of the patient (Shrivastava, Shrivastava, Ramasamy, 2013). Besides knowledge and education,
assessing patients’ attitudes towards diabetes and related self-care activities could also be indicative
of patient’s adherence to self-care activities (Mukhopadhyay et al., 2010).
Demographic Factors
An appraisal of the relationship between demographic factors and self-care activities can help illuminate
the variables that may serve as possible hurdles in the successful practice of recommendations. For
example, age (TVD, S.S et al., 2013), gender (Suguna et al., 2015; Shyamsundar, Singh, Kumar, 2014;
Viji, Singh, 2014; TVD, S.S et al., 2013), education level (Mumu, Saleh, Ara, Afnan, Ali, 2014; TVD, S.S
et al., 2013; Mukhopadhyay et al., 2010), income status (Shrivastava, Shrivastava, Ramasamy, 2013)etc,
have all been found to significantly impact the adherence to different self-care activities.
Existing empirical evidence points to certain demographic factors in which poor adherence to different
diabetes self-care activities has been observed consistently. Being illiterate or with the low educational
background, below the poverty line, housewives and males with sedentary lifestyles are more likely to
report poor default on physicians recommendations. Besides socio-demographic and cultural barriers,
other factors such as limited access to drugs, high economic costs, poor patient-doctor relationship
and unequal distribution of health providers all tend to restrict appropriate health care in developing
countries such as India (as cited in Shrivastava et al, 2013). Hence, knowing which of these factors
may serve as a deterrent to successful adherence behaviors can help improve overall patient care.
Temporal Factors
With longer duration of diabetes such as greater than 10 years, patients were found to possess better
self-care activities. These practices included following of prescribed eating plan and foot - care
(
Rajasekharan et al., 2015). It could be speculated that accumulated years of experience in dealing
with the different aspects of self-care lead to a possibly better adjustment to the demands of the
disease. Also, frequent exposure to self-care education measures leads to better self-care as compared
to patients with lesser duration.
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Psychiatric co-morbidities
RESEARCH HORIZONS, VOL. 6 JULY 2016
Co-existing conditions may hinder the patient’s ability to perform requisite self-care activities. Depression
and anxiety have been found to have negative implications in diabetes. The presence of co- morbid
depression is doubled in case of diabetes mellitus (Anderson, Freedland, Clouse, Lustman, 2001).
Although the exact nature of the relationship between diabetes, depression, glycemic control and
development of complications is debatable (Roy and Lloyd, 2012), existing literature mostly points to
a possible bi-directional relationship between depression and diabetes. It can only be speculated
whether diabetes precedes depression or the psychological stress generated while dealing with a
chronic illness such as diabetes, leads to the development of depression (Anderson, Freedland, Clouse
Lustman, 2001; Renn, 2011). Talbot and Nouwen (2000) explored a probable hypothesis whether an
increased risk of depression in diabetes is a result of the direct psychosocial demands imposed by the
illness. They concluded that burden of the illness was dependent on factors such as perceived illness
intrusiveness, social support, and patient coping style. These factors could possibly be the mediating
variables between diabetes and depressive symptomatology. Lin et al., (2004) found that in type -2
diabetic patients, major depression was more likely in women than in men.
Lin et al., (2004) found those diagnosed with major depression, were less likely to demonstrate self-
care activity than those without depression. Infrequent vegetable and fruit intake, more fat intake,
sedentary lifestyle, prevalence of smoking , lack of physical activity or exercise in any form (Lin et al.,
2
004), unemployment , lower educational status ( Ganasegeran, Renganathan, Manaf, 2014) are some
of the characteristics that have been associated with prevalence of depression in type-2 diabetic patients.
A key finding from Lin et al., (2004) study was that while patients with depression were more likely to
show lack in patient-initiated activities (such as physical -activity, non-adherence to oral hypoglycemic
medicines and inadequate clinical monitoring of glycemic control), there was no difference in physician-
initiated activities (such as blood sugar monitoring, testing and monitoring for nephropathy and
retinopathy) with non-depressed patients. Here, depression seemed to affect patient-initiated activities
more than physician-initiated activities. So activities that call for features such as motivation, confidence
and sustained an effort to make behavioral changes (such as increased level of exercise, healthy
nutrition, a decrease in smoking behavior ) may be in deficit in diabetic patients.
Dealing with chronic nature of diabetes is a challenging activity and affliction of depression may make
it more difficult for the patients. Such patients may need support for self-management activities such
as lifestyle modification and medication adherence. These findings suggest the need for integrating
depression screening with ongoing medical treatment for diabetic patients. Gonzalez, Fisher, Polonsky
(
2011) raised a concern about the conceptual model and the method of measurement of emotional
distress in diabetes. The predominant model employed in attempting to understand emotional distress
in diabetes is the diagnostic criteria for major depressive disorder (MDD). An over dependence and
over emphasis on the psychiatric classification of emotional distress experienced in diabetes may lead
to faulty pathologization of diabetes-related distress to depressive symptomatology. So, when a patient
reports some classical features of a depressive episode, it could be misconstrued as general depression
rather than characteristics of emotional distress specific to diabetes. Further certain symptoms of
diabetes mimic that of depression such as fatigue, excessive or reduced appetite, emotionality arising
from a hypoglycemic episode etc. could be mistaken as arising from a general depressive condition
rather than an illness-specific episode. Hence, utmost care has to be ensured in the diagnosis of
depression for diabetes patients.
Diabetes Distress
In diabetes, while there is an increased probability of depression, there would be some confirmed
amount of diabetes-related distress. Fisher et al., (2010) suggest the idea that depression and diabetes
-
related distress may be two separate entities. Hence, it is impertinent that health care providers are
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aware of the two related conditions to better appreciate their possible role in diabetes management.
Aikens (2012) suggests that diabetes - related distress may disrupt self - activities related to diabetes
and its treatment. It may interfere with self-care activities that are linked to the disease, while, depression
may disrupt more lifestyle oriented behaviors. Strandberg et al., (2014) found that regimen related
distress was the only distress domain associated with glycosylated hemoglobin levels (HbA1C). Diabetes
distress therefore, has the potential to negatively influence self-care activities of the treatment regimen
and the physiological indicator of blood glucose control. Fisher et al., (2013) report that diabetes -
related distress is emotionally manageable and highly responsive to intervention programs. Diabetes
distress may often be effectively reduced with health care professionals listening to, understanding,
and acknowledging the presence of diabetes distress in patients. By mere acknowledgment and tolerant
hearing, it is possible to help strengthen patient’s internal resources that can help them free from
internal distress related concerns (Gonzalez, Fisher, Polonsky 2011; Hessler et al., 2014). In any case,
better diagnosis and treatment of depression and distress is desirable in their own sense, as working
on these factors also assure improved medical outcomes for both the diabetic patient and physician.
Conclusion
This paper is a narrative review that attempts to highlight some of the factors that have an influence on
the self-care activities of diabetics. From this particular review, the authors attempt to highlight some of
the factors that influence self-care activities in diabetic patients. There exists a need to increase and
generate awareness about diabetes. A constant dialogue between caregivers and patients might be a
key to a better adaptation to the disease for the patient. Further, there is enough empirical evidence
that points to the significant role of mental health in the patient’s management of the illness. Previous
research point to specific socio-economic and demographic factors wherein poor adherence behaviors
have been observed.
Within the Indian context, the findings are somewhat inconsistent about the degree of adherence to
different self-care activities recommended to diabetic patients. So, one finds it difficult to conclude with
conviction which of the self-care activity is performed better than the other. It may be assumed, that for
patients performing certain self-care activities, it would be easier than others. It would translate to
better adherence and compliance for some activities than most. Therefore, there exists a scope for the
planning of educational and intervention programs for self-care activities in general. Information and
feedback about the necessity to perform behaviors that, in general patients may find difficult to perform
could help translate to better self-care. Intervention programs, diabetes information dissemination
sessions, skill- based training programs for appropriate insulin administration, basic foot-care and
simple physical exercises for patients may help improve patient involvement.
Existing depression could mean a double blow to the patient having to deal with the daily hassles of
diabetes self-care regimen as well as deal with the lows associated with depressive episodes. A diagnosis
of diabetes will bring with it a multitude of lifestyle changes. It is the associated challenges of living with
such a chronic illness on a daily basis that has the capacity to impact the patient adversely thereby
impacting medical outcomes. Depression and diabetes-related distress have been found to be distinct,
but comprises related constructs that produce a mostly negative influence on the patient in their handling
of the illness. Care has to be accorded in the diagnosis of these illnesses as they call for independent
treatment in themselves. Alleviation of depression or depressive symptoms in patients may help improve
patient adherence behavior. Attentiveness and response on the part of the physician have a role in this
case. Improving patient –physician communication is an area that can help tackle these issues better.
To conclude, the ultimate goal of diabetes management is optimal blood glucose control and prevention
and delay of associated complications. Hence, it is always desirable to be aware of factors that influence
the self-care regimen of diabetic patients as these factors ultimately impact efforts to maintain and
regulate glucose control of the patient. After all, hidden knowledge differs little from ignorance.
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*
Senior Research Scholar, **Assistant Professor,
Psychology Research Unit, Indian Statistical Institute, Barrackpore Trunk Road, Kolkata – 700108
Email : [email protected]
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