'Loss of self': a psychosocial study of the quality of life of adults with diabetic ulceration

Keywords: diabetic foot ulceration; psychosocial; quality of life; sense of self; promotion of health.

Abstract

At present, recognition of the importance of psychological factors in the care of individuals with diabetes is still in its infancy. Understanding of the specific psychological factors relating diabetic foot ulceration is embryonic. The study reported in this paper begins to raise awareness of psychosocial quality of life issues for patients living with diabetic foot ulceration, as narrated by the patients themselves. Findings revealed a range of restrictions on daily life that profoundly affected the individual's sense of self. These findings have implications for patients' adherence to treatment. Implications of these findings for health promotion are also reported.

Introduction

A growing awareness of the importance of psychological and social influences on health and illness has led to the development of a biopsychosocial framework [1] for research and intervention. This integrative mode [1] has served as a basic framework for academic and clinical research in many areas, including assessment of patients' health-related quality of life (HRQoL), as the inseparable nature of physical, psychological and social factors are taken into account [2]. Despite the recent burgeoning of methods for assessing HRQoL [3], [4] most studies still represent a largely clinical perspective, although many originate from patients' concerns. Self-reported perceptions of health and HRQoL have frequently been viewed as poor data compared to the 'hard' evidence provided by biochemical, physiological and psychological tests [5].

It has further been argued [6], [7] that the data collected have led to a confusion of two distinct forms of information - objective and subjective data - with all data becoming subsumed within a common measure. This in turn has led to the negation of the importance of the patients' subjective experiences and appraisal of their own wellbeing. This factor is of particular concern since health professionals have been shown to rate patients' HRQoL very differently from the patients themselves [8].

One of the consequences of health professionals' dominance in patient care and issues relating to patients' HRQoL has been that interpretation of patients' needs has been within a climate of professionalisation within medical discourse. As a consequence, the emphasis has been on addressing largely physiological issues. Research has demonstrated that doctors who are still largely trained in the medical model [9] are often unwilling and unable to adopt a biopsychosocial approach to patient care [10]. Perhaps if greater voice were given to patients' own perspectives then more attention would be given to psychological and social issues alongside the biological factors.

Research in individuals with diabetes has suggested that HRQoL is affected by a range of factors including effective metabolic control and positive mental health [11], [12]. However, given the confusion concerning collection and interpretation of data within studies [6], [7] it can be argued that these findings are limited. The research is further limited because application of the biopsychosocial framework to the care of individuals with diabetes, including factors related to HRQoL, has mainly emphasised the management of physical symptoms. This negation of psychological and social factors is despite the increasing recognition by those involved in the health care of people with diabetes that many patients experience major, long-term psychological and social difficulties. Currently in the UK, psychological care following referral is available only for those with 'severe problems' [13].

It has been argued [3] that this is a serious omission in care, having also major implications for health promotion for these individuals. Holistic patient care requires attention to physical, psychological and social areas of life, a premise which formed the foundations of the biopsychosocial model [1]. In this way the difficulties and traumas of living with diabetes - at all levels - are addressed. If these interrelated issues are not taken into account, this limits not only immediate intervention, but also the effectiveness of health-promoting practices and long-term care, since biological, psychological and social areas of an individual's life are interconnected and reciprocally influential. Indeed, while biological elements of care are clearly important, research has suggested that psychological and social factors are highly influential in determining patients' health-related behaviour [14].

Foot ulceration in diabetes

Foot ulcers are defined as major erosions of the epithelium that extend into the dermis and deeper tissues and are associated with reduced healing capacity [15]. In the UK, there are over 1.4 million people with diabetes [16], [17] and the prevalence of foot ulceration among people with diabetes is high. A study by Young et al showed 10.2% of the patients developed foot ulceration over a 4-year follow-up period [18]. Symmetrical distal polyneuropathy that encompasses motor, sensory and autonomic involvement is important in the pathogenesis of foot ulceration. In turn, foot ulceration is probably the most common complication of diabetes, affecting approximately 30% of patients [19]. Foot infections are the most common reason for admission to hospital among people with diabetes [15], [20], [21]. Additionally, many people with diabetes who proceed to amputation have previously experienced foot ulceration.

It is clear that foot ulceration is a major complication of diabetes for many patients and from an economic perspective the impact of foot ulceration on this patient group is well recognised [15], [22], [23]. However, there is a paucity of research into the specific effects of foot ulceration on the psychosocial HRQoL of patients. Further, although studies have reported psychosocial concerns experienced by patients with diabetes [24], [25] and the complications of lower extremity ulcers [26], there is little qualitative research which outlines patients' perspectives of living with foot ulceration. Given that foot ulceration is a common complication of a chronic condition, this void in research is important, particularly in the context of the studies presented above. Additionally, work with patients with chronic illnesses [27] suggests that many patients experience major psychological and social difficulties specific to their condition, which impact upon their HRQoL. Qualitative research which emphasises meaning and understanding [28] is the appropriate methodology for exploring these issues.

Aim of the study

This study aimed to address the lack of research relating to both psychosocial HRQoL issues for patients living with diabetic foot ulceration and also the limited number of studies that reflect patients' perspectives.

Method

A phenomenological approach using semi-structured, conversational interviews was used to enable participants to record their own experiences within this aim.

Each interview was tape-recorded, transcribed in full and given a code to preserve the anonymity of the participants. Every transcript was read line by line and summarised by the researchers in order to obtain a complete view of the interview and identify all the topics discussed. A process of interpretative phenomenological analysis refined the raw data [29]. The different professional and academic backgrounds of the researchers (podiatry, nursing and psychology) facilitated a multidisciplinary approach to analysis. The use of multiple raters is relevant to phenomenological study [30] since it facilitates indication and eradication of any inconsistencies between the raw data and the researchers' interpretations. Ethical approval was obtained for the interviews from the research ethics committee in the NHS trust concerned and from the consultant and nursing staff in the foot clinic.

Sample

A total of 47 people who met the criteria for inclusion (aged 18 years or over, diagnosed with diabetes and foot ulceration) and who attended a clinic for diabetics with foot problems were invited to participate in the study. Of these, 28 individuals (68%) agreed to participate, but four later changed their minds and a further three interviews were not completed because the participants had to leave the clinic to be transported home. None of the participants who declined to participate or who agreed initially but subsequently changed their minds wished to give the reason why. Twenty one interviews were recorded fully. The majority of participants (71%) were male (n=15) with a mean age of 58.4 years. The mean age of the female participants was 59.4 years. The length of time since diagnosis of their diabetes ranged from 6 months to 27 years (mean = 12.9 years). Eight participants (4 male and 4 female) had been diagnosed as having non-insulin-dependent diabetes mellitus (NIDDM) and the remaining participants (11 male and 2 female) had been diagnosed as having insulin-dependent diabetes mellitus (IDDM). Two men were South Asian but were fluent in English and did not require an interpreter. One man was African-Caribbean. The remaining participants were Caucasian and did not volunteer any information pertaining to ethnicity.

For the majority of patients (70%), foot ulcers developed after the diagnosis of diabetes had been made, but five participants reported that foot ulceration preceded a diagnosis of diabetes and for one patient the two events were simultaneous. In addition to their foot ulcers, 15 participants were suffering from consequences of diabetes other than foot ulceration, including failing eyesight, heart disease and kidney disease. The presence of these complications raised concerns for the researchers about the extent to which the views and experiences of the participants were attributable to foot ulcers and how far they reflected the difficulties of living with diabetes as a condition. For this reason all participants were prompted to talk specifically about the psychosocial effects of their foot ulceration on HRQoL. The researcher commenced each interview with a statement concerning the aim of the study (to explore HRQoL issues relating to foot ulceration). Throughout each interview, prompts were repeatedly framed within a context of this aim such that the emphasis of the interview was consistently on how foot ulceration as a complication of diabetes was affecting HRQoL.

Findings

Analysis of interviews revealed a number of themes which can be discussed within a context of 'loss'. Participants' narratives recorded a sense of loss of the life they had experienced before the foot ulceration and also an associated loss of 'sense of self'. As a consequence, the data are discussed here within the Charmaz [31] framework of 'loss of self'. Charmaz argued that individuals with chronic conditions become highly aware of previously assumed aspects of 'self' that are now lost. She proposed that this loss of self is exacerbated by four psychological conditions: living a restricted life; existing in social isolation; experiencing discredited definitions of self (as the sense of self becomes both altered and diminished); and becoming a burden. All four conditions were seen in the narratives of the participants. Findings in relation to each of these are discussed below.

Living a restricted life

Many participants reported that diabetic foot ulceration had had a major impact on their freedom to live life as they did before. Restrictions resulting from reduced mobility, the need to attend clinic and ensuring that effective care is taken of the feet were reported by the majority of participants, as in the extract below:

'It's affected me in many ways.When you stop to think about it you could just get up and go and now you can't; you're restricted; you have to take care not to knock your leg; you have to be careful that you don't tread on anything that you know is on the ground.'

Additionally, the psychological effect of restrictions to individuals' lives was noted. For example, one female participant commented on the restrictions to her life as a grandparent, as she was unable to undertake activities associated with the role:

'You know you miss the things you do with your grandchildren. I mean his other nan took him to feed the ducks and things. And it choked me because I thought, well, I should be doing that as well.'

Similarly, three men noted that they were unable to play football with their children and grandchildren. Other dysfunction was also reported, including psychological effects of restricted choice in all aspects of life and particular issues of lack of self-efficacy [32]. For example, one man who had been encouraged by professionals to rest his ulcerated foot, and thus remain immobile, reported that after 3.5 years the ensuing depression was too much to bear. He had begged, without success, for amputation and seriously considered doing the job himself because...

'You see after three and a half years of sitting - then I wanted it off. And I was determined one way or another to get it off. In fact I contemplated going to the railway station which isn't very far from me and leaving it on the railway line, because I was getting desperate.'

Finally, in an attempt to regain some sense of self efficacy [32]and limit the restrictions to his life at all levels, this man decided to ignore professional advice and become mobile, regardless of the risks to his physical health.

Another man who was blind reported that although he was aware of the necessity for effective foot care, continuous and consistent attention restricted his life. As a consequence, he determined to ignore the restrictions and wear the shoes he wished. Unfortunately the results of his action were severe:

'I forced my feet [into shoes] and then I went outside for 5 hours. Next day she [his wife] looked at my feet and said there were blisters, very big blisters. So it's my own mistake.'

This man deliberately chose to rebel against what he perceived as restrictions to his life enforced upon him by the foot ulceration and engage in behaviour that he knew to be potentially dangerous and detrimental to his wellbeing. He realised that such behaviour brought possible consequences, but felt that the risk taken was compensated for by the sense of freedom and release from the vigilance and restrictions of his life which were necessary to control his diabetic foot ulceration [33]. This decision and resultant behaviour is reflected in the research that suggests that many patients will actively ignore clinical advice which demands a reduction in QoL in return for reduced risk of long-term illness complications [34].

These findings have many important implications for health professionals, not only in terms of compliance with treatment, but also in the context of health promotion. They support the view that focussing on the physical realities of the condition to the detriment of the psychosocial features of HRQoL has important, limiting effects on patient care and strategies for intervention.

Existing in social isolation

Most of the participants reported negative effects of foot ulceration on social roles and activities. Restricted mobility, pain and lack of employment all contributed to a growing sense of social isolation. Only seven participants (33%) were of retirement age, but of the remaining 14 participants, only three (14%) were in paid employment and all three commented that they required lengthy periods of sick leave. Enforced unemployment impacts on the individual not only in financial terms, but also psychosocially. Social networks developed purposefully through shared work experience cease to have meaning or value and become increasingly problematic to maintain. Relationships with former work colleagues were gradually eroded as the once shared experiences of the work environment were no longer relevant.

Additionally, physical isolation caused by reduced mobility was reported by four male participants. For example, one man had experienced difficulties in accessing suitable toilet facilities as a wheelchair user and consequently found going out of the house stressful. Another man spoke of being unable to leave his flat, even to go into the garden, unless two people were available to lift his chair up and down the steps either at the back or front of his house. This did not happen often and he therefore felt a deep sense of social isolation and psychological distress.

Experiencing discredited definitions of self

Most of the participants in the study reported experiencing discredited definitions of their sense of self as a direct result of foot ulceration. Different reasons for this response were narrated, but a major if simple issue reported was the inability to bathe or shower. Six participants reported being unable to take a shower or bath because of the need to ensure that they had a dry dressing on their ulcer at all times. This had a major impact on their sense of self, as they felt unable to maintain good personal hygiene. One woman commented on her inability to dance since developing foot ulcers, when dancing had been a major feature of her pre-ulcer lifestyle. Two women complained about the shoes they had to wear as undermining their femininity. For example:

'I went to a wedding on Sunday and I had to wear trainers. I don't feel confident when I go out [because] I'm so used to dressing up in skirts and tights and high-heeled shoes. I can't wear them at all now. I mean my daughter keeps telling me I'm trendy because all the youngsters are wearing these trainers and I'm saying "look I'm fifty five, you know. I don't want to be trendy".'

One man who had been made unemployed as a result of his foot ulceration stated that the loss of his Heavy Goods Vehicle licence resulted in him feeling...

'I would lose my life as well. In fact I think I did.'

The lack of employment signified far more than financial hardship, it also resulted in significant change in his sense of self, accompanied by a deep sense of loss.

Becoming a burden

This theme was reported in the narratives of all the participants. For example, living a restricted life in terms of lack of mobility and the inability to work, together with loss of social confidence, contributed to several of the participants reporting dependence on others as a major feature of living with diabetic foot ulceration. Simple daily activities such as cooking and driving were carried out by others, leading some participants to report feelings of being a burden. For example, one South Asian man, who was also blind, detailed the negative effect his dependence was having on his family:

'These two disabilities [blindness and ulcer] is making a mess in my family. They are trying to help me all the time. They can't work properly. My children are helping me all the time. My wife cannot sleep. In the night-time I call her two or three times. I've got a two-bedroom house. I've got four children and upstairs is my bedroom and toilet. The bathroom is upstairs so we're in hell you know, but I can't explain it to anybody. My whole family is suffering.'

Another man who had also suffered a stroke talked of the burden of his physical dependence upon his wife; a problem exacerbated by the advice given by professionals who discouraged him from moving around in any way, but offered advice only on 'lifting' techniques to his wife. Such advice, although useful, was experienced by the man as wholly inadequate as it failed to address holistically, the HRQoL issues around foot ulceration and his inability to move around. Further, it appeared simply to pass responsibility for care completely to his wife, which the man felt placed an unbearable burden on her:

'You know, she's bearing the brunt of all this more than I am. I don't like having to [depend on her for help] because it means she has to do things which if I could do them, she wouldn't have to...I said, "well the wife can't possibly do it on her own" so they are having her in to see how she'll manage to move me about as best she can without me doing anything.'

Another man, aged 53 years, who was forced to live with his mother because of his inability to care for himself, talked of the burden he felt himself to be at a time of life when he felt he should have been caring for her:

'She was supposed to go and live with my sister in October, but because of my illness and the swelling of my feet, she hasn't gone. I know deep down that my illness has held her back. Really she would be better off with my sister.'

Implications for professional practice

Living with a foot ulcer had a detrimental effect on the participants' daily lives. Practical issues such as reduced mobility and problems with performing basic tasks such as taking a shower or doing the shopping or cooking increased their dependence on others. This is seen in the participants' psychosocial responses of being a burden and leading a restricted life. Relationships were adversely affected, leading to a sense of isolation and discredited experiences of self and identity. The findings of this project raise a number of issues about professional practice.

First, a holistic approach is needed to assess an individual's total experience of living with diabetes as opposed to focussing solely on physical care. Current power relationships between professionals and clients may militate against this [35]. For example, a British study of 175 observed interactions between nurses and older adult patients demonstrated that professionals use language as a means of subtly exerting control over their clients [36]. In an inpatient setting individuals may have no option but to comply with the wishes of their carers but, when at home, away from that influence, they may choose to behave very differently and engage in what they regard as reasonable risk taking. One interpretation of this situation is that the individual presents one 'face' to the professionals and another to family and friends. A move towards a more open and collaborative style of communication between client and professional could enable practitioners to gain a more accurate insight into the difficulties of living with diabetes [35].

A second issue for professional practice is that of education. Professionals may label individuals as 'noncompliant' without appreciating the difficulties of coping, on a daily basis, with the sort of problems outlined in the report by Richmond [35]. An accurate understanding of the experiences of each individual would help to inform both teaching strategies and the nature of education provided by professionals. Foster [37]argues that individuals may be afraid of developing the complications and so attend the clinic less often. Alternatively they may feel intense anger, even to the point of denying that they have diabetes altogether. Others may be overcome by the experience of mixing with other individuals with diabetes who have more advanced stages of the disease. In such circumstances educating individuals requires far more skill than simply transmitting information if people with diabetic foot ulceration are to be helped to cope effectively with their condition. In the study reported here, education about foot care was clearly an important issue. Of further importance are factors such as individuals' financial circumstances, their personal tastes and situations; factors which might have helped some of the participants in this study feel more positive about their approaches to managing their condition.

Effective psychosocial care requires recognition of the individual needs of each patient in exactly the same way as physical care programmes are specific to the individual. In this way, as physical care programmes are designed to prevent physical complications, so too the aim of psychosocial support should be to prevent or lessen psychosocial complications. In order to achieve this, health professionals need to be educated and informed so that the narrow perspective adopted by some, reported by Mitchell [33], might be avoided. Perhaps one strategy for broadening strategies is to embrace the notion of a multidisciplinary team for patient care. Indeed, the contribution of a multidisciplinary approach to diabetic foot problems has previously been shown to be effective in managing ulcers [38].

A final issue for professional practice is that of encouraging those with diabetes to attend foot clinics, preferably before they develop ulcers. A study of 59 adolescents with diabetes, which focused on their perceptions of the social and psychological aspects of living with the condition, demonstrated that attendance at diabetic clinics tended to decline as the young people moved into adult services. It also showed that they became less diligent in monitoring blood sugar levels, sometimes fabricating results [39]. While it is accepted that adolescents may have some special needs it is also appropriate to critically compare paediatric and adult provision for people with diabetes. Such comparison could help to determine ways in which adult services might become more client centred and thus better able to support individuals of all ages, with diabetes.

Conclusion

Although small, this qualitative study has highlighted individuals with diabetes' experiences of their psychosocial HRQoL as they live with diabetic foot ulceration. The study aimed to fill a void in research, as at present recognition of patients' perspectives and of the importance of psychosocial factors in the care of individuals with diabetic foot ulceration is limited. The research adopted a phenomenological approach which enabled in-depth study of the participants' HRQoL. Building on the findings of this study, further quantitative research needs to be undertaken with other individuals living with diabetic foot ulceration in order that a measure of HRQoL might be developed for use. In this way, the individuals living with foot ulceration might be given greater input in issues of care.

The paper has argued that psychosocial factors have major implications for the quality of life of individuals living with diabetic foot ulceration. As a consequence, effective intervention and care strategies need to take account of these factors. In this way, a complete biopsychosocial programme of care can be introduced at the point of diagnosis and then monitored and developed according to individual needs. Such a programme might arguably be beneficial not simply in terms of patient satisfaction, but may also lead directly to greater levels of compliance with treatment and also may prove to be cost-effective in terms of the prevention of long-term biological, psychological and social complications.

The issues raised by participants in the study were reported to the clinicians at the hospital by the research team and some minor changes in care were instigated immediately. For example, one participant who reported that her foot ulceration prevented her from showering or bathing was provided with a waterproof 'shoe' to enable her to shower and bathe without getting her feet wet. Concerns relating to psychosocial issues were tabled to be discussed with staff of the clinic.

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