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Psychological consequences of segregation resulting from chronic Burkholderia cepacia infection in adults with CF
  1. A J A Duff
  1. Correspondence to:
    Dr A J A Duff, Department of Clinical & Health Psychology & Regional CF Unit, St James's University Hospital, Leeds LS9 7TF, UK;
    a.j.a.duff{at}leeds.ac.uk

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Patients with CF segregated because of Burkholderia cepacia infection must be helped to assemble coherent structures for social relationships if they are to adapt successfully to such management.

In 1997 the median life expectancy for individuals with cystic fibrosis (CF) was 31.5 years in the UK1 and it has been suggested that those born today can expect to live well into their mid 40s.2 However, there is huge variability in the physical condition of adults with CF. While malabsorption, osteoporosis, diabetes, and liver failure all contribute to incapacity, lung disease is the main cause of morbidity and mortality. Some patients have near normal levels of lung function. Others, however, are debilitated by dyspnoea and dependent on oxygen.

Lung disease in CF is primarily due to the consequences of infection. In the first decade of life Staphylococcus aureus and Haemophilus influenzae are the predominant organisms in sputum, while in older children and adults Pseudomonas aeruginosa is most common.3 In the past 15 years some CF centres have had epidemics of Burkholderia cepacia infection. Although patients respond to standard antibiotic treatment,4 most become chronically infected and experience a more rapid decline in lung function. The reasons for this are still unclear, although recent microbiological findings suggest that there are different pathogenic potentials of various B cepacia genomovars.5 In the UK prevalence rates vary between centres but increase significantly if spread from patient to patient is not prevented. In this respect, B cepacia differs from other bacteria in that it is usually caught through close or frequent contact with another B cepacia positive CF patient.5,6

In most UK adult CF centres it is now accepted practice to separate patients who are infected with B cepacia from those who are not. Guidelines on cross infection effectively mean managing infected patients in isolation, away from the main CF wards, but even this may not be sufficient to prevent the spread of the organism. Contemporary advice to patients extends segregation to outside hospitals—directing them not to attend CF meetings, not to have any physical contact with B cepacia negative CF patients, and to adopt impeccable hygienic behaviour.7 Although difficult, where this has been done fewer patients with CF become infected with B cepacia for the first time8 and some clinicians now report a decrease in the overall number of cases. However, as a result of the emergence of cross infection in CF patients by a multiresistant strain of P aeruginosa, some clinicians now advocate segregating patients according to their microbiological status.9,10 Others have questioned the wisdom of adopting such practice, highlighting—in addition to clinical reasons—the potential emotional impact on patients and their families.11

PSYCHOLOGICAL CONSEQUENCES OF SEGREGATION

While it is known that adults with chronic illness are at a greater risk of developing psychological problems,12 prevalence rates of such difficulties in adult CF populations are still largely unknown. What is known is that individuals at the end stages of the condition are even more vulnerable to psychological problems resulting from increasing “loss” of, for example, mobility, autonomy, relationships, and quality of life. Furthermore, the disease becomes more “visible” and intrusive and less predictable, which can give rise to feelings of anhedonia, helplessness, fear, and anxiety.13 With this in mind, while much has been published on the physical benefits of segregating patients with CF, almost no information exists on the psychosocial consequences of such practices.

It is well recognised that being “hospitalised” has a negative effect on psychological functioning.14–17 Isolation in hospital has the potential to have even greater negative effects on emotional well being. One study reported that over 42% of patients identified negative emotions associated with isolation.18 Such patients have significantly higher rates of anxiety and depression and significantly lower levels of self-esteem and control.19 Evidence from other patient groups who have experienced segregated and isolating medical treatments (such as those with cancer, leprosy or HIV positive patients) suggests that the experience is confining, depressing, boring and lonely, leading to feelings of clinical depression, despair and abandonment.20 Indeed, loneliness, monotony and stigmatisation have been reported as frequently as potential positive aspects of segregation such as having time for reflection, which some patients find very therapeutic.21 In adult men diagnosed as HIV positive, social isolation is thought to be compounded by ruptures in relationships and the breakdown of social support networks.22 In addition, while there may be a high desire among patients to receive information and reassurance, being segregated appears to inhibit communication.18,23 Colonisation with B cepacia has resulted in exclusion from CF conferences and support groups, leading to the loss of mutual support systems typically available to adults with CF24 and, consequently, to further increases in feelings of isolation, anger, and of being a “microbial leper”.25

INTERVENTION STRATEGIES

Patients must attempt to reassemble coherent structures for social relationships if they are to adapt successfully to their new status. The most significant factors identified as being able to improve the experience for the patient are ones which enhance human interaction. While there is no doubt that the world wide web has become the greatest source of information and opened up a stream of new possibilities for facilitating communication between individuals with CF, there are inherent pitfalls if such sources and processes are left unchecked. Web sites and chat rooms can, unfortunately, also be a fountainhead of disinformation, rumour and “folklore”. As there are few resources currently available to develop such sites effectively, more immediate strategies must be found “beyond the Internet”.

There are clear implications for how staff and family members can assist in ameliorating the psychosocial effects of isolation in hospital and social segregation.20 Nursing staff and social workers, in particular, have key skills in working with patients in giving information or liaison capacities and have critical roles to play in the assessment of mood states and the provision of strategies aimed at improving the experience.21 While psychological therapists have the necessary skills to provide psychotherapy on an individual basis, such “reactive” strategies will only ever meet the needs of the few and such services tend to be under-resourced. It remains important to screen regularly for psychopathology, either by conventional or psychometric assessment, particularly when it is known that the patient has had previous psychological problems. Where indicated, psychotherapy must be sought. Psychological therapists can also adopt a more consultative role and help other team members to build on their skills—counselling or otherwise—and support them in supporting individuals who are segregated because of B cepacia infection. This would not necessarily involve spending more time with people. On the contrary, it seems that the principal aim must be to empower patients, facilitate their self-control, and to minimise boredom and rumination. Liaison with other professional groups—such as occupational therapists, who may instigate activity scheduling programmes—or agencies—such as charities and action groups who may provide, among other things, befriending—will be of great benefit to patients. Other suggestions include improving the frequency and quality of written information and staff-patient communication and establishing regular visiting programmes.18

Patients themselves could also have important roles to play. Chronic disease self-management programmes (CDSMPs)26,27 are small highly structured groups led by volunteers, all of whom have the condition, and focus on cognitive symptom management, exercise and nutrition, problem solving, and communication with medical professionals. In the UK the government is now actively supporting CDSMPs with national pilot schemes taking place over the next 3 years.28 Several CDSMPs already exist—for example, for patients with arthritis and multiple sclerosis—and outcome studies have shown significant reductions in the severity of symptoms and pain, and gains in quality of life and resourcefulness. These studies also indicate the potential for further improving communication and doctor-patient relationships.29 Although difficult, it may be possible for small groups of patients with CF who are segregated because of B cepacia and who have been genomovar typed to form CDSMPs. Where microbiological status and genomovar type are unknown, such groups could still take place using videoconferencing technology.

CONCLUSIONS

It is well recognised that being “hospitalised” has a negative effect on psychological functioning. Segregation and isolation may have even greater negative effects on emotional well being. Such patients have been shown to have significantly higher rates of anxiety and depression and significantly lower levels of self-esteem and control. They must reassemble coherent structures for social relationships if they are to adapt successfully to their new status. While the Internet offers improvements in communication and information dissemination, facilities for people with CF are generally unavailable and poorly monitored. More immediate solutions may rely on key members of CF teams, particularly nursing staff and social workers, facilitating patients' self-control and empowerment and minimising boredom and rumination. Individual psychotherapy will benefit only the few patients whose emotional distress is identified and who are able to access direct psychological support. While such services remain in relative short supply, screening remains imperative. Psychological therapists working in CF teams may have a more consultative role to play in helping establish proactive intervention schemes. Specific nurse-led strategies, improvements in communication, visiting programmes and CDSMPs should all be explored further.

With calls for segregation practices to be extended beyond patients with CF infected with B cepacia, there is an obligation to learn from the experiences of this group of patients who have already experienced radical changes to their medical management and support networks and to shape future management accordingly.

Patients with CF segregated because of Burkholderia cepacia infection must be helped to assemble coherent structures for social relationships if they are to adapt successfully to such management.

REFERENCES

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