VOL: 102, ISSUE: 30, PAGE NO: 51
Christine Moffatt, MA, DN, RN, PhD, is professor and director for research, Centre for Research and Implementation of Clinical Practice, Thames Valley University, London; Patricia Price, CHPsychol, PhD, is director of the Wound Healing Research Unit, Cardiff University; Philip Morgan, RGN, PhD, is director of the Lymphoedema Framework Project, Thames Valley University.
Christine Moffatt and colleagues call for greater awareness among health professionals of the psychological impact on patients of chronic wounds.
Over the past two decades, many advances have been made in the treatment of chronic wounds such as leg ulcers. Care has followed a traditional medical model, with the emphasis being on clinical diagnosis and treatment, and nurses have taken little time to understand the psychological issues that patients face living with a chronic wound.
Most qualitative research into the health-related quality of life (HRQoL) of patients with venous ulcers has been undertaken by nurses. A number of themes emerge from the studies, including pain, a restricted lifestyle, loss of mobility, powerlessness and major life changes. Hyland et al (1994) developed a disease-specific quality-of-life tool and found that pain, quality of life, sleep disturbance and impairment of mobility, were major contributors to the restriction of activities that were reported. These restrictions influenced patients’ mood, with sadness, depression, loss of willpower and feelings of helplessness commonly described.
Quality of life was also affected by patients’ preoccupation with their ulcer and its treatment as well as by avoidance strategies that they adopted to protect the integrity of their skin and prevent recurrence of their ulcer.
A descriptive study by Walshe (1995) using phenomenological analysis explored the lived experiences of 13 elderly patients with leg ulcers. Pain emerged as the most profound and unremitting experience of this patient group. Ulcer leakage, smell, impaired mobility and a pessimistic view of the potential of their ulcer to heal affected the quality of life of these patients and their ability to cope with everyday activities. This study identified a lack of appropriate help that would enable the patients to cope with their chronic illness, and recommended a more holistic approach to assessment and care.
A phenomenological study of 37 patients by Chase et al (1997) focused on the lengthy healing time associated with venous ulcers. An important finding was that whereas healing usually has positive connotations, for the patient with venous ulcers this is not always the case: the chronicity of the healing process changes the nature of the healing experience, for which pain is a dominant feature. Again, venous ulcers appeared to limit mobility and normal activities, including work, because of pain, treatment, and changes to body image.
The patients in this study also described experiencing a lack of information and understanding about their venous ulcers, which not only had a negative affect on their ‘ownership’ of the ulcer but also on their ability to take control and contribute to their care.
The conclusions of other phenomenological studies echo the negative effects on HRQoL caused by pain, restricted lifestyle, lack of sleep and social isolation. The studies described below found physical, psychological and social consequences that may not be immediately obvious to healthcare professionals. For example, Charles (1995) found that feelings of hopelessness were the most significant theme, while Bland (1996) reported how venous ulcers had an impact on virtually every aspect of life. Patients in her study worked hard to minimise these effects and desperately wanted their ulcers to heal.
Krasner (1998) identified eight key themes, four of which were concerned with pain, and listed 20 descriptors of pain used by patients that indicated the diversity of the individual pain experience. The remaining four themes were: feeling frustrated, disruption to work, having to make significant life changes, and satisfaction with new activities.
Ebbeskog and Ekman (2001) conducted semi-structured interviews with 15 elderly patients with chronic venous leg ulcers. They concluded that elderly people are greatly influenced by the illness experience. Their comments indicated that they feel it is an ongoing process between two opposite poles: on the one hand there is a sense of altered body image and of being imprisoned in a disrupted body, the consequences of which are major life changes; on the other hand, there is hope of a positive outcome through healing and, indeed, an end to the ulcers. In this context hope has its basis in a desire for freedom from a burdensome body, from having to cope with a painful wound, and from the restrictions to everyday life that a venous ulcer imposes.
Three of the studies reviewed used grounded theory to explore patients’ feelings and experiences of living with venous ulcers. Hyde et al (1999) in Australia used gender-specific data collection methods (allowing women respondents to express their views in their own way) so as to ‘give voice’ to women suffering from venous leg ulcers. The findings confirm that pain, leakage, smell and social isolation are major determinants of HRQoL. Equally important, however, was the finding that while the community nurse addressed everyday wound-related problems, other, more subtle, aspects were often overlooked. These included patients’ concerns about ongoing use of analgesics, having to make changes to preferred modes of dress, and the frustration felt at the failure by professionals to acknowledge patients’ knowledge about their venous ulcer and their ability to recognise the early stages of infection. Equally significant were the personal qualities developed by the women to cope with the practical, physical, social and emotional consequences of venous ulceration. These qualities included willpower, determination, perseverance and a realistic sense of hope.
Douglas (2001) interviewed eight patients with venous leg ulcers aged 65-94 years who were under the care of district nurses. Five major categories were developed: the physical experience; vision of the future; healthcare professional and patient relationships; loss of control, and the carer’s perspective. Particularly interesting is that the category ‘healthcare professional and patient relationships’ was identified as the core category, because all the others were heavily influenced by their relationship to it.
Central to this core category were issues around conflicting advice, lack of information, patient loss of control, inconsistency of treatment and care, and non-adherence to treatment. The author concluded that a greater awareness of the consequences of venous ulceration by the professional, and a more collaborative relationship with patients, would enhance their perceptions of control over their lives, boost self-esteem and improve coping strategies.
Phillips et al (1994) published the results of a semi-structured interview of 62 patients with chronic leg ulceration. Of these, 81 per cent believed that the ulceration had a direct affect on their mobility, which was associated with leg swelling. Ulceration was related to time lost from work, and attributed to loss of employment and to having adverse effects on finances. In addition, 58 per cent believed the ulcer to be burdensome, while 68 per cent believed it had a negative emotional impact. In all, 65 per cent stated that the pain from their ulcer was severe.
The first attempt to use generic health-related quality of life tools to assess the impact of chronic leg ulceration on patients was undertaken by Lindholm et al (1993) using the Nottingham health profile. Since then, other studies have used this and similar tools in evaluations of chronic leg ulceration (Franks and Moffatt, 1998). A full discussion of these findings is beyond the scope of this article, but some general themes have emerged, one of them being that body pain and physical mobility are consistently poorer in patients with ulceration compared with normative controls (Franks et al, 2003; Franks et al, 1999; Franks and Moffatt, 1998; Lindholm et al, 1993). Furthermore, it appears that while, overall, HRQoL is poorest in elderly women, it is younger men who feel the impact of ulceration more in relation to, particularly, body pain, mobility and sleep quality (Franks and Moffatt, 1998; Lindholm et al, 1993).
Evaluations of HRQoL in patients with chronic leg ulceration have come largely from the nursing profession. Such studies provide the patient’s perspective of ‘being in the world’ with an ulcer. Even though many of the conclusions of the qualitative studies cannot be generalised with confidence, and although many of those reviewed here are small, they should not be ignored. It is the patients’ perspective of their condition, rather than simply the outcome of treatment, that is bringing to the fore differences in priorities that can affect the HRQoL of patients.
The evidence is that chronic leg ulceration can be excruciatingly painful irrespective of the ulcer aetiology, with relatively few patients achieving complete pain relief. Mobility appears to be directly affected by the ulceration, which is also manifested as a reluctance to socialise. This is further compounded by patients avoiding situations with a high risk of further ulceration, and embarrassment about the odour associated with many ulcers. Psychological disturbance is another factor that affects HRQol, and this may manifest as depression, anxiety, and a negative body image.
Many of the issues that have an impact on the psychological health of patients with leg ulceration could be helped by improved care of the ulcer and better symptom control.
There is considerable evidence from the literature on HRQoL that patients experience problems with professional care (Charles, 1995), and there are many reasons why this may be so. Nurses have a professional duty to ensure that they have the requisite knowledge and skills to deliver evidence-based care. Many of the issues raised in the literature on leg ulcers suggest that problems arise because of poor communication and a failure to appreciate the difficulties patients face in living with their condition.
The emphasis on complete healing of leg ulceration as being the most important outcome of care may lead to feelings of professional impotence when this does not happen. In some patients, feelings of failure and helplessness may lead to their developing social defences such as withdrawal, the blunting of emotional response, and denial of the severity of symptoms.
These reactions may be further exacerbated if patients are considered by professionals as being emotionally or physically demanding or if they are labelled as being ‘difficult’.
There is considerable literature on the complexity of dealing with these situations and on the need to provide psychological support to both patients and professionals. Successful resolution will require a more realistic approach to patients’ problems. For example, there may need to be a shift in emphasis towards control of symptoms and modification of treatment. This will be achieved only through the development of an effective therapeutic relationship.
It is essential that healthcare professionals recognise that patients with chronic wounds have psychological problems and ensure that research is undertaken to identify the most effective strategies to improve the psychological health of these patients.
Nurses should take these issues into consideration with every patient they care for, and the profession must strive to ensure a more balanced approach is taken to making recommendations on the care of patients with chronic wounds.
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