Lifestyle changes – a continuous, inner struggle for women with type 2 diabetes: A qualitative study

Abstract

Objective. The objective of this study was to describe how women handle necessary lifestyle changes due to a chronic disease using diabetes as a model. Design. Interview study. Setting. Ten women living in western Sweden were interviewed. Method. In-depth interviews and analysis were performed using the phenomenological ideas of Giorgi. Subjects. Ten women diagnosed with type 2 diabetes, mean age 65. All were either on disability pension or retired with varying complications ranging from none to stroke. Results. The findings revealed five themes: the ambiguous feeling of others’ involvement, becoming a victim of pressurizing demands, experiencing knowledge deficits, experiencing an urge, and finding reasons to justify not changing. The invariant meaning of a continuous inner struggle illuminates the experience of making lifestyle changes for women with type 2 diabetes. Conclusion. The findings of the present study show that it is vital for health care professionals to treat women diagnosed with type 2 diabetes with great respect and understanding regarding the struggle that they are going through. By being aware of the everyday burden for these women, acknowledging the fact that they want their lives to go on as before, may serve as a “key” to assist women in changing attitudes towards living in accordance with the disease and appreciating the lifestyle changes as a challenge as they become healthier and improve their quality of life.

Key Words::

• Experience
• lifestyle change
• struggle
• type 2 diabetes
• women

The experience of making lifestyle changes using diabetes as a model was the focus of this study. The findings reveal perceptions of a continuous struggle with the demands of making lifestyle changes. Five themes emerged: the ambiguous feeling of others’ involvement, becoming a victim of pressurizing demands, experiencing knowledge deficits, experiencing an urge, and finding reasons to justify not changing. Awareness of deterrents to lifestyle change can benefit health care professionals in their effort to facilitate women's struggle to improve quality of life and health.

Introduction

Diabetes is a common and chronic disease, affecting at least 2–4% of the total Swedish population [1]. People with diabetes have an increased risk of cardiovascular disease, renal disease, infections, blindness, and depression [2,3]. Health care costs of diabetes have been estimated at 8% of the total health care budget of Sweden, making it a major policy concern [1]. Lifestyle changes such as regular exercise and healthy food concern all patients with diabetes. Often, personnel within primary health care serve as educators informing women about the necessity of making lifestyle changes.

Earlier research

Several studies have shown that lifestyle changes are worthwhile in the treatment and prevention of diabetes. Lifestyle changes in individuals with decreased glucose tolerance may prevent diabetes type 2. Physical activity minimizes insulin resistance [4].

Well-conducted, prospective cohort studies have shown that people with type 2 diabetes who are more physically active, or have a better physical capacity, are also to a lesser degree diagnosed with cardiovascular disease [5] and have a lower risk of premature death [6].

Many type 2 diabetes patients struggle to comply with risk management advice even when they receive substantial information [7–9] and commitment to self-management often decreases over time [10]. However, Parry examined the women's views of the disease cause, treatment, and management and concluded that comprehensible messages from health professionals could influence these differences [11]. In contrast, Johansson et al. [12] show that people diagnosed with diabetes want everything to remain as usual.

Whilst a great deal of research efforts have been made in the medical management of people with diabetes, very little work has been directed towards understanding how individuals with diabetes experience making the necessary lifestyle changes. In addition, women rate lifestyle changes as more as more overwhelming and difficult to handle, and receive less social support than men do, placing women in a more vulnerable position [3,13–15]. To our knowledge, no one has asked how women diagnosed with diabetes experience lifestyle changes. The objective of the current study was therefore to describe how women handle the necessary lifestyle changes due to a chronic disease, using diabetes as a model.

Material and methods

Description of informants

A purposeful sampling technique was used to select 10 women diagnosed with type 2 diabetes, and recommended lifestyle changes such as regular moderate intensive physical activity, healthy diet, and weight reduction, if the woman was overweight. Women registered in a diabetes database were selected to achieve variation in age (37–87 years, mean 65 years), mean time from diagnosis (10 years), and severity of disease. Incidence of complications ranged from none to a history of myocardial infarction, peripheral neuropathy, angina pectoris, stroke, and hypoglycemic attacks. Eight of the women were retired and two were on disability pension.

Data collection

Informants were interviewed at a primary care facility in western Sweden after being informed about the study and signing informed consent. Interviews were conducted in a private room with only the participant and interviewer present. The interviewer, KA, adopted the theoretical framework of medical anthropology, meaning a multidimensional perspective, with the aim to bracket past knowledge of the phenomena. Being a general practitioner with past experience with the patient group, KA noted her presupposition before starting the study in order to strive for utmost openness. The second author did not have any previous experience with the patient group. The audio-recorded interviews lasted from 40 to 60 minutes starting with the question, “What is your experience of making lifestyle changes?”. The researcher then asked follow-up questions such as “Can you tell me more?” or “How did you feel?” in order to deepen the understanding of the experience of the informant. To reduce risk of bias, the interviewer had not been responsible for the patient's regular health care.

On completion, each interview was transcribed by a secretary, read and listened to simultaneously by the first author to ensure accuracy. The study was approved by the Regional Research Ethical Committee.

Data analysis

Giorgi's phenomenological research method contains 5 steps (Table I) [16]. To strengthen the credibility of the analysis, another member of the research team also coded the text, confirming that codes appeared logical and consistent with the contents. Minor discrepancies were discussed until consensus was achieved.

Table I. The phenomenological research method described by Giorgi and examples from the study.

Step	Content	Example
1	Collecting of verbal data	Ten interviews were made with the objective to describe how individuals handle necessary lifestyle changes due to a chronic disease, using diabetes as a model
2	Read all transcripts several times. Gain a global sense of the phenomenon	All interviews were read until the researcher gained a holistic view of the data
3	Divide data into parts. Identify meaning units sensitive to the discipline of the researcher. Elaborate and redefine into themes until all text is analyzed	“I think about it all the time; if it continues like this, the children soon won't have a mother, the way I am leading my life” Other people close to the person are involved in the experience of making lifestyle changes
4	Transformation of everyday language of the informants into the perspective of the researcher with emphasis on the phenomenon being investigated. Use free imaginative variation	Social processes and cultural traditions get others involved The ambiguous feeling of others’ involvement
5	Synthesis of themes into an essence or general structure. general structure.general structure.	A continuous inner struggle

Results

The essence of the phenomenon of making lifestyle changes when faced with diabetes type 2 can be described as a continuous inner struggle. The women see themselves as victims of the disease and unfairly treated by life, resulting in a continuous struggle, both internal and external, with the demands for lifestyle changes.

I have this enforcement that I have to think about what I eat and that I have to exercise and others who do not “have sugar” can of course do whatever they want. I think it's boring, I think it's unfair. It is terribly hard. (IP6, age 59)

And she continues:

Wherever you are, if you're at a party or in all other situations, people sit and eat and I cannot. It's tough. (IP6, age 59)

Findings revealed five themes: the ambiguous feeling of others’ involvement, becoming a victim of pressurizing demands, experiencing knowledge deficits, experiencing an urge, and finding reasons to justify not changing.

The ambiguous feeling of others’ involvement

Close relationships where sharing meals was a daily activity could be a struggle when the partner preferred food not suitable for people diagnosed with diabetes. The women describe using people they live with and their actions as an excuse for themselves to continue with their unhealthy habits. This situation came about both at home and when eating out on a restaurant.

Now I have told my husband that the next time we go out and get coffee, you eat what you want but do not force me into having a sandwich. Often, he says “What will you have?”. No, I do not think I'll have anything, only a cup of coffee. Should you not have a sandwich, then I won't either, he says … then I take a sandwich and then I get anxious and become angry at him simultaneously. (IP6, age 59)

Others’ involvement also became obvious at weekends, on holidays, and on special occasions such as birthday parties. Either there was nothing suitable to eat or the host had really tried to buy something low in sugar. That was also perceived as troublesome, creating an ambiguous feeling as the women wanted to fit in and conform. Eating regularly was also hard when having to consider the needs of family members.

A woman struggled because she put her children and the rest of the family first:

I have had no time for myself … I think about it all the time; if it continues like this, the children soon won't have a mother, the way I am leading my life. (IP 5, age 35)

This woman struggled with the combination of being a mother, a wife, and taking care of her own health. In reality, her own needs came last, giving her thoughts of despair.

Becoming a victim of pressurizing demands

The women described a feeling of injustice and how they thereby became victims of demands. Internal as well as external demands were experienced as depressing, as pressure never let up. The threshold to initiate physical activity or other healthy measures was unattainable and psychological mechanisms such as displacement were common.

… all I can feel is that pressure; now you have to do this and now you have to do that. That ‘have to’ makes me so tired. Everything gets so hard and then I find something else to do. (IP8, age 49)

This woman was so overwhelmed by demands that she found no motivation whatsoever to make lifestyle changes. Instead, she folded under pressure reasoning that she need not do anything boring and demanding. Others reasoned that it did not matter if they ate healthily or not. Nothing happened either way.

Experiencing knowledge deficits

The gap between knowledge and behavior was in many women wide. The raising of knowledge could in some cases lead to denial and be used to construct excuses and evasions.

It doesn't matter if it is “light” and full of fibers, it doesn't help. I don't know what to do. (IP 6, age 59)

So, despite the necessary knowledge, life was still a struggle and knowledge a burden.

Yes, one knows exactly how to do it, what one should do, but (IP 5, age 35).

Experiencing an urge

Wanting to do the right thing while having an urge not to created struggle.

I think one has an urge that takes over. Now, I feel like eating this. It's like a drug; I believe drug addicts have the same discussions. It can be like, “Well, now that I have already started (down the wrong path), I can start tomorrow instead (down the right one)”. Then everything is about getting what I have an urge for. (IP 8, age 49)

Not being able to let go of the struggle and incorporate healthy habits put an enormous amount of pressure on women. The comparison to drug addicts illuminated the feeling they experienced when the urge set in. It was then hard to stick to the recommended diet. Moments of cheating gave the women enormous anxiety. They then tried to reason “When everybody else is eating, I should also be able to”.

Finding reasons to justify not changing

When trying to stick to the recommended diet and physical activities, a wide variety of reasons not to do so appeared. The women, in their struggle to find a new balance, rephrased arguments for keeping their ways of being.

Nobody wants to change, I am sure. (IP 1, age 62)

They worked out ways of thinking so that they could continue the same way as before but were not able to stay content with their choices and actions, and instead felt bad getting stuck in the struggle.

I look forward to trying to go a few times to this gym, but it is a matter of cost, too. I have skis, but it's a hassle; you can't really ski here and my husband stops me, saying, “Will you ski and break your legs?”, but I feel that I can do it. I would like to do things like that. But now I've had this cold, but would like to go skiing once while the snow is still here, or if more comes. There are those “walking sticks”, but it looks so silly. (IP 3, age 68)

This woman found one reason after another for not changing. The result was a continuous inner struggle and argument to avoid physical activity.

Discussion

Ten women with type 2 diabetes who were recommended lifestyle changes by their general practitioner were interviewed with a focus on their experience of making these lifestyle changes. The findings reveal that the essence of making lifestyle changes when faced with diabetes type 2 was experienced as a continuous inner struggle. Five themes were revealed: the ambiguous feeling of others’ involvement, becoming a victim of pressurizing demands, experiencing knowledge deficits, experiencing an urge, and finding reasons to justify not changing.

Comments on study method

It is of the outmost importance in a qualitative study to ensure that all stages of the research process are validated.

The researchers have attempted to consistently adhere to guidelines of the phenomenological research method. Not bracketing past knowledge could possibly affect outcome, along with lack of an open mind during interviews. The researcher conducted both the interviews and text analyses bearing this in mind. There is, however, always the possibility of a deficit in bracketing affecting results.

The sample was selected from one geographical area and included only women, obviously restricting generalization to other areas and men. The rationale for including only women was that earlier studies have shown gender differences in barriers to lifestyle change indicating that women rate barriers to lifestyle change as more overwhelming and difficult to handle than men do and receive less social support in making lifestyle changes [3,13–15]. The fact that all of them were either retired due to age or on disability pension also limits generalizability. It is possible that currently employed women would express other views and thoughts. The aim states that the study describes how women handle necessary lifestyle changes due to a chronic disease, using diabetes as a model. The transferability of these results to any other chronic disease could be questionable.

Comments on results

The women in this study live in constant conflict with their disease instead of living in accordance with it. This conflict results in a continuous struggle. Most of those interviewed feel that they have lost their joy in life, that they must change eating habits, and feel as if they are being robbed of something important. The continuous struggle is illuminated in another study including nine women with type 2 diabetes, showing that integration of diabetes into daily life is a multifaceted and complex process involving various steps from diagnosis to achieving health in their illness [17].

The ambiguous feeling of others’ involvement

Our study concluded that interaction with others could cause a struggle in women with diabetes. The disease competed with other interests or the needs of others.

A study by Ellison & Rayman [18] reported that an illness such as diabetes type 2 involves both the individual and relatives and has obvious influences on social life. It is clear that the results from that study confirm the results of this study where women clearly expressed being affected by their relatives’ wishes and routines.

Becoming a victim of pressurizing demands

Many women described a feeling of emptiness, a feeling of life as meaningless if unable to be lived as usual. They wanted to enjoy life and the demands for lifestyle change created great conflict in their lives. Anderson et al. showed in a study that participation in an empowerment-based training program resulted in improved psychosocial outcomes, changed attitudes to diabetes and its effect on quality of life, and lower blood sugar levels [19].

Experiencing knowledge deficits

The women in our study described a lack of knowledge of possible causes of a specific blood glucose level or weight gain. The women also described how, despite knowledge, other interests took priority.

Arborelius has described that knowledge affects human behavior but this is not the case for lifestyle issues. Human behavior is instead greatly influenced by emotional factors [7].

Nagelkerk et al. reported that perceived barriers to diabetes self-management were lack of knowledge of a specific care plan, helplessness and frustration from lack of glycaemic control, and continued disease progression despite perceived adherence to the care plan [20].

Perhaps Pichert [21] is the most accurate in describing this area of diabetes education when stating that research on diabetes patient education programs yields mixed results.

Experiencing an urge

Experiencing an urge for something outside your intended diet plan can create conflict. The women used to live with a constant sugar high, and a new diet plan created an urge for something sweet and “unhealthy”. They then struggled to maintain their way of life as it was before.

Abnormalities of eating attitudes and behavior are associated with an impairment of metabolic control [22]. Short-term overeating has been shown to induce insulin resistance in fat cells [23], therefore overeating can also be part of the onset of diabetes. Crow et al. showed that rates of binge-eating disorders (BED) in subjects with Type II diabetes were substantial. They concluded that eating disorders deserve attention so as to be detected and treated in order to permit a decrease in morbidity and better outcomes in body weight loss and quality of life [24].

Interestingly, acupuncture has been shown to help diabetic patients by lowering the blood glucose content, lowering the release of pancreatic glucagons, and attenuating symptoms of polyphagia (the urge to eat too much) [25].

Finding justifying reasons not to change

The women in the present study had many arguments not to change such as economic reasons and temporary illness. This is in accordance with another study which concluded that main barriers to adherence to exercise were lack of time (39.0%), coexisting diseases (35.6%), and adverse weather conditions (27.8%) [26]. They rephrase arguments for keeping their ways of being and fight to live in the illusion that they do not have diabetes or do not have to make lifestyle changes. Hence, patients get caught in the struggle not to change instead of integrating lifestyle changes in their lives. The wish to carry on life as it was before is confirmed in a study by Johansson et al. They show that people diagnosed with diabetes want their lives to carry on as usual. Change is not something that is seen as positive [27].

Conclusion

As lifestyle changes are vital to some women with diabetes, it is important to identify barriers and possible mechanisms to facilitate the sometimes difficult process. This study concludes that women with a chronic disease, using diabetes type 2 as a model, handle lifestyle changes with an inner struggle. They struggle with others’ (e.g. relatives) involvement, and pressure from demands such as physical activity. They also struggle with the burden of having knowledge deficits, having urges and even trying to find reasons not to have to change.

Future research

Based on data from this study, future research should focus on evaluating interventions that can minimize the struggle experienced by these women. Studies could evaluate provider-coached, problem-solving interventions that facilitate integration of diabetes into everyday living. Furthermore, studies could focus on comparing the approach “the lifestyle changes are a burden” with the approach “the lifestyle changes are a challenge”, evaluating the variables’ impact on quality of life and glycaemic control.

Acknowledgements

The authors extend their appreciation to participants who, by sharing their stories, made this research possible.

Source of funding

This work was supported by the Research and Development Council of the county Södra Älvsborg, located in western Sweden.

Ethical permit

The study was ethically approved by the Regional ethical review board in Sweden, no 546 - 06.

Declaration of interest

The authors report no conflict of interest. The authors alone are responsible for the content and writing of the paper.