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Dietary Pattern of Self-Care Among Asian and Caucasian Diabetic Patients

Posted on: Saturday, 30 October 2004, 03:00 CDT

Abstract

Diabetes mellitus is a growing pandemic and its self-care management rests primarily with the individual. This qualitative case study investigated the self-care dietary pattern among a group of 25 Asians and 24 Caucasians diagnosed with type 1 or type 2 diabetes. Data collected from a semistructured interview and a 7- day health diary explored the self-care activities undertaken by the participants to establish metabolic control. From an analytical perspective, the collective responses were placed on a continuum ranging from strict adherence, moderately flexible adherence to very flexible adherence. The findings suggest that most of the participants were located in the latter two categories of diet related to self-care. Implications for healthcare professionals in promoting self-care will be discussed.

Key words: Diabetes * Nutrition and diet * Self-care * Self-help groups

Self-care practices in relation to illness symptoms have recently generated interest among social scientists and healthcare practitioners. The role of self-care in earlier history in prolonging life cannot be denied, often providing the basis for medical discoveries (Haugh et al, 1989). Currently, self-care behaviour is being rediscovered as a potential means for people to take control of their health and, some claim, to reduce healthcare cost (Dean, 1981; Shuval et al, 1989).

Defining self-care

Although there has been some research into self-care behaviour, it is still an under-explored area of health research (Dean, 1986; Rakowski et al, 1987; Haugh et al, 1989). Definitions of self-care are fraught with problems. They are imprecise and variable, and generally appear to be discipline specific, suggesting that the analytical focus may differ from study to study. For example, Haugh et al (1991) define self-care in terms of response behaviour to a perceived symptom without the involvement of the doctor. These responses include deciding to do nothing, resting, taking over-the- counter medicine and resorting to various forms of self-treatment and care provided by family members without concurrent medical advice.

A contrasting often implicit definition is that self-care is non- professional care (Bentzen et al, 1989). In this context self-care refers to care activities carried out by the individual with aspects omitted. Dean's (1989) definition, however, represents self-care as 'the range of behaviour undertaken by the individuals to promote or restore health'. This broad definition encompasses self-care actions in either the presence or absence of medical supervision and further recognizes its significance in both health and illness.

Coinciding with Etzwiler (1994) and Funnell et al (1991), Dean (1989) assumes that the daily management of chronic conditions, such as diabetes, is a routine regularly undertaken by the patient and supported by his/her family and the healthcare team. However, this is not always the case. It is important that self-care actions are understood in terms of the meanings attached to them and the context in which they take place, the norms they are subject to and the resources available to the individuals (Kickbusch, 1989). In this article self-care has been defined using Dean's (1989) broad definition but without assuming that chronic conditions are managed in any particular way or that they have the same significance or meaning to everyone.

In the UK, patients are to be given more control over managing their own illness. For example, the recent government initiative 'The expert patient' (Department of Health, 2001a) recommends that patients' expertise about the management of their chronic conditions should be viewed as a central component in the delivery of self- care. The current National Service Framework for Diabetes: Standards (Department of Health, 2001b) emphasizes the importance of developing a partnership in care between the provider and consumer of care. This requires the involvement of diabetic patients to take an active role in the decision-making process relating to their self- care mangement.

Dietary self-care in diabetes

Chronic conditions are a major health problem in today's society and their management depends largely on the efficacy of self-care (MacClean, 1989). Diabetes mellitus is a lifelong chronic disorder of multiple aetiology (World Health Organization, 1999) with a well- understood pathophysiology (Glasgow, 1995). A person diagnosed with type 1 diabetes is totally dependent on injected insulin to survive, while type 2 diabetes is caused by either a shortage of insulin or a fault in the way the body responds to insulin being produced by the pancreas (Diabetes UK, 2001). Its prevalence is such that it has been labelled as 'epidemic' (Broom and Whittaker, 2004). The consequences of poor glycaemic control can be potentially life- threatening, both in the short term (e.g. hypoglycaemic reactions, recurrent ketoacidosis) and long term (micro-vascular and macrovascular complications) (Vallis, 1998; Meetoo, 2004).

Contemporary management of diabetes places heavy emphasis on individual responsibility for diabetes control of blood sugars and of food consumption. The notion of self-care with regard to a recommended diet is considered important in order to maintain nornioglycaemia, thereby minimizing diabetes-related complications (Rubin and Peyrot, 1992; Rubin et al, 1997). This requires the diabetic patient a lifetime of monitoring carbohydrate metabolism, energy expenditure and insulin or tablet, which inevitably demands a level of understanding about diabetes and successful social and psychological adjustment (Dunn et al, 1990). Thus, the physical and social challenges of diabetes affect substantial and increasing numbers of the adult population, and because it is a chronic condition, the challenges must be faced on a daily basis for life.

It would therefore be reasonable to assume that the motivation for the person with diabetes to follow a healthy diet would be high. However, for many individuals, adhering to an agreed regimen of self- care is extremely difficult. Studies relating to dietary adherence suggest that the majority do not rigorously follow the recommended diet (Ary et al, 1986; Lockwood et al, 1986; Vallis, 1998). Many of these studies seek causal linkages to explain 'non-compliance'. Consequently, they ignore the range of meanings associated with living with diabetes and the relationship of these meanings to a social and cultural context (MacClean, 1989). It is this context and depth that this study aimed to examine.

Table 1. Sample composition

The study

The aim of this qualitative case study was to examine the dietary patterns of self-care for a group of Asian and Caucasian diabetic patients.

Methodological strategy

A qualitative multi-method case study approach was selected as it strives towards a holistic understanding of cultural system of action (Feagin et al, 1991), yielding not only a process but also a product of enquiry relating to the case (Stake, 1995). In achieving this objective, the author sought to grasp the multiple realities and negotiated flux of participants by allowing their voices to be heard via the selected methodologies rather than simply judging them as true or false. Consequently, the author needed to be what Blumer (1969) calls 'getting close' to the naturally occurring reality which he metaphorically referred to as 'lifting the veils' and 'digging deeper'. In contrast, a quantitative case study knowledge becomes objective, measurable and reality is often described by measurable properties, which are independent of the observer or his/ her instrument.

Study population

A non-probability purposive sample (Merriam, 1998) of 25 Asians and 24 Caucasians (n = 49) (Table 1) with either type 1 or type 2 diabetes were recruited from the local diabetic clinic. Asian was defined as those with an Indian subcontinent background while Caucasian referred to anyone who was white European. One of the factors considered to be important in sampling was the influence of ethnicity on adherence to diet since the incidence of diabetes has shown a dramatic rise among the Asian population. This pattern is reflected in other ethnic communities. For example, in South Asian and Afro-Caribbean communities, the rate of diagnosed diabetes is at least three to five times higher than those from a white European background (Joint Health Survey Unit, 1999). Gender was also considered a factor in relation to diabetes. Further, each participant needed to meet certain criteria before being included in the study (Table 2).

Data-collection tools

The two data-collection tools adopted were a semistructured interview and a health diary. The main source of data, the interview, lasted 45-90 minutes and was conducted in the privacy and comfort of the participants' homes (inclusion criteria: aged between 18 and 80 years with a home-base). Given that retinal/vascular problems associated with diabetes mellitus are not uncommon, the incluson of blind people in the study may have been useful. However, in this study there was no-one with this disability.

Table 2. Inclusion and exclusion criteria

Following the interview, each participant was given a 7-day health diary to complete, preferably at the end of each evening. The aim was to explore how people presented their self-care dietary behaviour in the interviews when compared withthe diaries. It was explained that the diary should contain all self-care activities (undertaken to maintain metabolic control) considered important in maintaining a normal blood sugar of 4-7mmol/litre. The data- collection tools were piloted with three Asian and three Caucasian patients. Although generally successful, two of the questions were revised and prompts were included to each question.

Interpreters

Total or partial linguistic competency is central to cross- cultural studies (Mead, 1939; Becker, 1991; Davies, 1999). Problems arise when the researcher and participants do not share the same language, and in this study, the author's linguistic shortcomings among the Urdu-speaking participants meant that three paid interpreters were employed. In providing verbatim translation, interpreters can either act as a conduit between the interviewer and the interviewee or they can take a more active role by conducting the interview independently (Baker, 1981). Futher, shared culture between the interpreter and the participants can be reassuring to the interviewees (Freed, 1988).

Enlisting interpreters, however, is not without drawbacks. For example, an interpreter may censor responses during translation in order to protect or modify the participants' healthcare behaviour, thereby threatening the validity of the study (Kapborg and Bertero, 2002). The interpreters' role as co-researchers was only agreed after undergoing a short training in data collection as well as fieldwork observation.

Ethical consideration

After a strenuous defence of the qualitative paradigm, the local research ethics committee approved the undertaking of this study. Following explanation, each participant was requested to sign a consent form. In cases of identified illiteracy, the information contained in the form was read by the interpreter before obtaining a signature from the participant. All volunteers were assured of anonymity, confidentiality and the right to withdraw their participation from the study at any time without prejudice. Pseudonyms have been used in the data analysis.

Data analysis

The principle of analysing data from a case study has yet to be established and is one of the least developed aspects of the case study methodology (Tellis, 1997). However, analysis often depends on the investigator's style of rigorous thinking along with sufficient presentation of evidence (Yin, 1989, 1994). In order to become familiar with the data, the interview transcripts and the health diaries were read on several occasions. It is only through such an intimate link with the data that themes emerged and dietary patterns compared.

Following a detailed analysis of their comments in the interviews about their eating patterns, the types of food they consumed, their perceptions of conformity to the recommended dietary regimen and their general philosophy of diabetes management, a decision was then made to place individuals on a continuum, ranging from strict adherence to very flexible adherence.

Strict adherence

The first group of people comprised four female and three male Asians, and six female and three male Caucasians (n = 16). They believed that following dietary advice was essential for good health. This was a form of insurance against complications. Analysis also indicated that these participants preferred an orderly and methodical life which was compatible with their diabetes self-care. Several of them stated that they did not have a 'sweet tooth' and therefore did not find the dietary restrictions onerous. For example, one Asian woman aged 55 years expressed reasons as to why she followed the strict dietary advice she had been given:

'In have always complied with my treatment. I try my very best to keep my sugar level under control because if I don't my sugar goes high and I start getting pains, etc...even at parties and weddings I avoid all foods which are a risk to my health. If they are serving fizzy drinks, I will always ask for water.'

A male Asian participant aged 35 years asserted:

'I have to watch what I eat to avoid problems. Being overweight is not good for you. It can create many problems and cause heart attacks. I care for my skin, especially the nails and feet as well as if you hurt yourself, take time for healing, especially if you are a diabetic. I do exercise every morning for about 20 minutes on a rowing machine and walking as well and pray five times a day, which is also an exercise. I also go to the clinic and I feel in control of my diabetes.'

When asked about responsibilities related to controlling diabetes, one Caucasian woman aged 62 years explained:

'Well, you've got to, not to miss your injections, of course. You've got to eat at regular intervals, erm, and generally look after yourself and watch out for warning signs of something going wrong.

[Prompt: was there a time when you didn't comply with any aspect of your self-care.] No because I make it a thing to comply with that treatment. The only time even when I've been ill, you know, when I've been in bed ill, I've still tested [blood glucose] and had my injections the same and I've rung the doctor to make sure whether I had to reduce the insulin or what to do, you know, but erm, it's a way of life for me I'm afraid. I look at it that way. I've got it and I've got to keep going, there's only me will suffer.'

Moderately flexible adherence

A second group on the continuum comprising six female and two male Asians, and six female and three male Caucasians (n = 17) included those who took a moderately flexible approach to diet. To live a 'balanced life' was the guiding principle. They spoke of allowing for indulgences (labelled as cheating) when they gave themselves permission to eat without spoiling such pleasure with guilt. They also described a more liberal pattern of eating and adjusted their insulin dosage according to their consumption of restricted foods. Although they did not wish to compromise their health unduly, they refused to allow the diet to dominate them. One Asian man commented:

'What I believe, everybody got his opinions and the people who follow the instructions, they will be getting better in their diabetes. But people like me who have been to clinics for years and years, I believe they [doctors] are doing same routines, taking blood and the urine but there is no cure for diabetes...Yes I mean normally in weddings, rice, but if you too much rice you have to be careful...Well sometimes I care about it but sometimes I have to eat it... That's right, yes. Like I eat so much food at weddings or parties, that's what I do [adjusts dose of insulin].'

Very flexible adherence

The third category of people on the continuum comprised eight female and two male Asians, and four female and two male Caucasians (n = 16). They reported eating restricted food more frequently than the moderately flexible group. They argued that their behaviour was not overly risky because they monitored their blood glucose and adjusted their insulin accordingly. They spoke of a desire for foods in certain instances and of a lack of understanding and preparation by the diabetic healthcare team. The tendency to adopt a very flexible style of adherence was noted, e.g. by two Asian women aged 38 years who remarked:

'I never comply with my treatment at weddings or parties. If other diabetics eats sweets and desserts at parties, why should I not enjoy myself? Parties are about food. After eating the wrong foods, I do go ill but I also recover in a couple of days.'

'When I attend parties, etc. I always eat and drink what's there. I can't ask for diet drinks. I like to enjoy myself.'

A Caucasian woman aged 49 years stated:

'What annoys me they [professionals] expect everybody to be little tin soldiers, we all follow the same, whereas we don't, I mean I've a friend who can sit and eat cream cakes yet she is diabetic. I couldn't sit and even look at a cream cake, it'd send it straight up. To me they expect so much of you yet they never ever, nobody's ever told me the actual problems of diabetes...you just get on with it and that's it, that's the attitude I got first. Finding out about it I think, because people don't understand it...the first consultant I saw I could have thumped him literally. He sat there and my husband was there and he was saying "you must sit and eat this, you must do this and all your weight's this" and I said no it's not because I don't eat a quarter of what my husband eats...so I've said no, sod off, I'm doing it my way and it's working now. I've lost a stone in the last month.'

There are many examples of dietary excerpts from the interview transcripts corresponding with the participants' statements entered in their health diary. Here three examples are focused on where the entries in the diary differ from views expressed in the interviews. The first two people were classified as belonging to the first group of responses, i.e. they believed following dietary advice was essential for their good health. Mr Alexander (Caucasian) was 58 years old and during the interview he stated:

'You have to live a well-ordered life. You've to accept that there's a much stricter regime to life than there ever was before. Gone are the days when you could go out after breakfast and not bother having anything to eat until you came home at tea time. I've responsibilities to make sure that I eat the right foods at the right time in order that I can control the diabetes. I'm controlling my diet, erm, my food is all grilled and not fried.'

This is in contrast to the dietary routine he described in the diary. He noted that he had eaten a sausage muffin, a packet of crisps, various types of red meat, meat and potato and pork pies, chicken curry and rice. His blood glucose had been abnormal during this 7-day period.

In a similar -way, Mrs Smith (Caucasian), aged 32 years, said in the interview:

'Well, I've got to be sensible about my diet, erm, you know, I've \cut down on the fatty foods and the sweet sugary foods and plenty of protein and stuff. I've got to do that, erm, I've got to eat, erm, eat more or less at the same time everyday and try and take my insulin at the same time everyday. I think it's all about routine.'

This compares to the diary in which she wrote:

'Had a full English breakfast: eggs, mushrooms, bacon, tomatoes, toast, etc. [Another entry read] Went to restaurant. For starter had stuffed mushrooms, main course, chicken, chips, vegs, dessert chocolate cake and cream and about five lagers... Came back and had a couple more lagers. Watched a video and went to bed. Soon as my head hit the pillow I fell asleep.'

The third person, Mr Peters (Caucasian), aged 60 years, differed from the first two discussed so far in that he was classified as in group two, as he had a moderately flexible approach to diet. In his interview, he said:

'Erm...food...I do lapse especially when I am out. For example we went away last weekend, we went to Blackpool for a weekend, we just had a good time because it was Jackie's husband's birthday, 40th birthday...but funnily enough, having said that I broke what I would count quite a few rules by the fact that I had a few drinks and wine at the night, don't ask how much, and I had sweets, sweets with my meal. So you think now, were that wrong or were that right?'

In the diary he wrote:

'It's dinner [lunch] time and I have to eat healthy to keep blood glucose down. For dinner I cooked small slice of grilled ham without any fat on it, boiled potatoes, steamed cauliflower, new carrots and a mug of tea. I washed up and went in the garden for a walk and in the greenhouse to watch the plants.'

The results from the interviews and diaries provided many points of overlap. However, comparing the main messages from the interviews and diaries there is evidence that using different methods produced some different data. The methods, the author believes, complement each other in that they form the basis for a discussion of the way people saw self-care and how this varied according to the context.

Discussion

Self-care is concerned with facilitating and promoting changes in individuals' perception about themselves as well as their role and responsibility in healthcare decision making. Such a conscious level of involvement leads to restoring and maintaining positive levels of health and therefore a sense of wellbeing.

From the data analysis, it was evident that the first category of participants were happy with a more controlled approach to the diet in order to avoid diabetic complications. Among the second category of the participants, the central concept that governed their response appeared to be balance to a lifestyle that did not unduly compromise their health. This balance was satisfying to the participants. The last group took an impulsive approach to dietary management. They consumed the restricted food and yet felt angry and guilty when they gave in to their cravings. The influences identified in this study concur with many of those found in existing models of health behaviour. These include beliefs about the severity of the condition, one's susceptibility to it, and the perceived benefits of changing behaviour and attitude towards the condition (Decker, 1974; Rosenstock, 1974; Fishbein and Ajzen, 1975).

This article has also demonstrated a link between a sense of control, satisfaction with the participants' approach to diabetes and their acceptance of diabetes. Those who expressed satisfaction about how they managed their diabetes (strict adherence) suggest that they had control over their diabetes and related care.The overall approach to their dietary pattern seemed to have resulted from a conscious deliberation, which took into account the need to accept diabetes as a way of life and the consequences of non- adherence.

The responses from the first category of participants are in sharp contrast to the views adopted by the second (moderately flexible adherence) and third (very flexible adherence) categories of participants who appeared to have lost their control over diabetes. On the whole, dietary flexibility seemed to have been their strategy in enhancing a sense of wellbeing. This was achieved by a variety of means ranging from planned 'cheating', a perceived approach to a balanced food selection process to adjustment of insulin doses.

It appeared that avoiding diabetes complications was synonymous with maintaining normal blood glucose parameters brought about through regular appraisal of their self-administration of insulin doses only. While the attainment of recommended physiological health is very important in minimizing complications (Meetoo, 2004), it is nevertheless imperative that diabetic patients are made aware of the importance of not focusing solely on their blood glucose, which could otherwise compromise their wellbeing.

The findings have therefore important implications for promoting self-care, health education and health promotion as well as disease prevention. Self-care actions may result in behaviour that healthcare professionals consider detrimental to health (very flexible adherence). However, when such actions emerge from deliberate autonomous choices then the decision must be respected. Self-care acknowledges the individual's right to make his/her own decision, including the decision to do nothing. When actions emerge from a sense of powerlessness which are ultimately demoralizing then intervention to facilitate self-care becomes critical (Bentzen et al, 1989).

However, the objectives of interventions by health carers to promote self-care should be considered carefully to take into account personal interpretations of living with diabetes and related self-care management. This means that ongoing organized meetings are necessary to understand the diabetic person's experience of living with diabetes over a period of months and even years. This process of reflection and learning from experience is the essence of self- care.

The diabetes study described in this article also attempted to operationalize the use of mulumethods in a way that foregrounds a multidimensional view of reality. From a positivist frame of reference, it is easy to move the two respondents, along with several others, who gave contradictory accounts of their behaviour to an alternative category of response. This would involve adjudicating between the account in the diary and that in the interview. The researcher would have to make a judgment that the respondent had either misled the researcher in the interview or that the diary period was unusual in some way. However, employing a wider view of validity and the purpose of using multiple methods, the two accounts were treated as different data produced under different circumstances and as equally valid.

Elliott (1997), in a review of the research literature on diaries, has argued that diaries are written for a particular reader, i.e. the researcher in mind rather than a general audience. It is interesting, therefore, that even though Mr Alexander and Mrs Smith knew the study was about diet, they felt able to articulate in writing that they were not keeping to their diets, while in the interviews they presented a different picture.

The concept of self-care constructed in Mrs Smith's and Mr Alexander's interviews appeared to be one based on the medical model of strict adherence to a dietary regimen. The interviewer, a nurse, was an important part of the picture here in that, it could be argued, it may have been difficult to express an alternative 'non- adherence' view of self-care in front of a medical audience.

Writing in a diary may not, however, involve the same threat of possible confrontation over variation in adhering to a dietary regimen. It is also important here that writing in a diary can be seen as a much more deliberate act in which there is time to decide what to put in writing. Therefore, entries in a diary are less likely to be questioned than accounts made by the participants during an interview as there is more deliberation involved in filling in the diary. However, there may still be an issue about leaving a permanent written record that for some people is an issue.

Mr Peters provides an example of someone who felt able to articulate his variation from dietary recommendations at the interview but not on paper. Writing a diary or making comments during an interview are at the same time both private and public acts. People may be more comfortable in expressing particular views on one or other occasion. That is one of the advantages of using more than one method.

The above point about the importance of the circumstances in which people are prepared to make particular points mirrors everyday life. People are always making seemingly contradictory statements. These are tied to the circumstances, including the audience, at the time. The model of self-care presented in interviews and in diaries can therefore also vary according to circumstances. On some occasions people may feel it more appropriate to define self-care in terms of compliance to medical advice. In others, self-care may be seen as behaviour that does not involve professional advice.

Many qualitative researchers (Stanley and Wise, 1993; Hertz, 1997) point out that there are many possible perspectives on social reality. If this is the case, contradictory findings could be used to reflect on the reasons for these differences. Questions of power and control in health and social care in England are raised in issues such as the extent of involvement of service users in service development and research. These debates pose questions such as what is health and disease, who decides what are important research questions and whose 'truth' is the 'real truth'? Some of the issues around medical power may be played out around the temptation to define the validity of the account according to medical criteria\. In this study the contradictions between findings were not ironed out. They were treated as valuable data in their own right and as indications of how people present accounts of self-help in different circumstances.

Limitation of the study

Without focusing in minutiae, it is suggested that the fieldwork was limited by the author's lack of linguistic competence with the Urduspeaking participants. Despite the short training, data collected and translated by the interpreters were shorter in length when compared with the author's own interview. Key issues raised by participants were either not fully explored or ignored. Financial constraints prevented the transcripts being verified by a professional 'independent' translator. As a nascent stranger to the diabetic clinic, the author's involvement in selecting a matching sample was limited to what was offered by the staff.

Critical care planning is an understanding of patients' interpretations of his/her illness and the health beliefs which underpin those interpretations. Research studies exploring the explanatory models of people with diabetes compared with healthcare professionals may well identify areas which may require strengthening in order to enhance partnership in care and adherence to self-care.

Conclusion

Self-care actions occur within a social context. They are part of a pattern of overall behaviour and the meaning attached to the behaviour (Kickbusch, 1989). The findings demonstrate how responses to the diabetes diet are not independent actions. Instead, it reflects the participant's overall reaction to diabetes and to the life context in which he/she lives. Diet-related health actions are influenced by a host of interrelated factors, which include individual differences, social and cultural influences and the nature and experience of diabetes itself. Efforts to promote self- care must take into account the breadth of these factors and encompass both individual and sociocultural initiatives.

The author is aware of controversy surrounding use of the term 'diabetic patient'. Some people are opposed to the implicit reduction of the person to their disease as potentially discrediting in itself, while others regard it as an accurate and candid description. For verbal economy, the author has occasionally used the words 'diabetic patient' respecting that it carries undesirable connotations to some people.

KEY POINTS

* Central to government initiatives, such as the 'expert patient' and the National Service Framework for Diabetes, is the promotion of self-care.

* Dietary self-care is important in maintaining metabolic control.

* Self-care actions need to be understood in terms of the meaning attached to them and the context in which they take place.

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Dr Danny Meetoo is Lecturer in Adult Nursing, School of Nursing, The University of Salford, Manchester

Accepted for publication: September 2004

Copyright Mark Allen Publishing Ltd. Oct 14-Oct 27, 2004

Source: British Journal of Nursing

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